PARENTS AND ASSOCIATES OF THE NORTHERN VIRGINIA TRAINING CENTER

Considerations and Options for Authorized Representatives

September 2013

This pamphlet was developed by the Parents and Associates of NVTC to assist you in deciding whether to transition the resident you represent into a community placement.

Parents and Associates of the Northern Virginia Training Center

September 2013

CONSIDERATIONS AND OPTIONS FOR AUTHORIZED REPRESENTATIVES Table of Contents

Introduction ............................................................................................................................................... 2 Your placement options.................................................................................................................... 2 Training Centers ............................................................................................................................ 2 Community waiver funded placements .................................................................................. 3 Community ICFs/ID ...................................................................................................................... 3 Guide to Community-Based Supports ......................................................................................... 4 Essential background........................................................................................................................ 4 Settlement Agreement Requirements .................................................................................... 4 What is the likelihood that the closure date will be extended? ..................................... 5 Prospects for NVTC remaining open indefinitely............................................................... 6 Your Options: Pros and Cons of Community Placements.......................................................... 7 Would your family member benefit from community placement? .................................. 7 How vulnerable is your family member? ................................................................................... 7 Can you be present for the placement process and follow up long-term? .................... 7 Are you unable to be present or follow up? .............................................................................. 8 Who to Trust ............................................................................................................................................. 8 Who are the players in the transition? ........................................................................................ 8 NVTC health professional and direct care staff .................................................................. 8 Discharge planners and social workers ................................................................................ 9 Support Coordinators from CSBs ............................................................................................ 9 Providers of supports in the community ............................................................................... 9 Other players who can help ............................................................................................................ 9 Health professionals taking Medicaid ................................................................................. 10 RCSC for dental and other services....................................................................................... 10 START .............................................................................................................................................. 10 The Arc of Northern Virginia ................................................................................................. 10 Adult protective services.......................................................................................................... 10 Privately hired case managers............................................................................................... 10 More Detailed Aids to Your Decision Making ............................................................................. 11 ATTACHMENTS begin on page 12

Parents and Associates of the Northern Virginia Training Center

September 2013

Considerations and Options for Authorized Representatives

This pamphlet was developed by the Parents and Associates of NVTC to assist you in deciding whether to transition the resident you represent into a community placement.

Introduction
In December of 2012 and May of 2013, your family member, or you as his or her Authorized Representative (AR), received letters from the Department of Behavioral Health and Developmental Services (DBHDS) declaring that Northern Virginia Training Center (NVTC) was to close on June 30, 2015, and stating that all residents must vacate by March of 2015. If NVTC closes, as the current DBHDS administration plans, you will have to decide where your family member resident will go next. This pamphlet identifies your choices and points to consider in deciding among your placement options. It also explains your legal rights, discusses the prospects for NVTC remaining open, and who to trust for what kind of information. We are parents, siblings, family members, that is, ARs just like you. As such, we can raise issues and offer suggestions that government employees cannot. We also speak from the vantage point of our intense involvement in advocacy for NVTC since the Settlement Agreement was made public and the DBHDS presented its closure plan in January of 2012. Subsequently, we have been tracking and advocating for our loved ones and yours in many forums, including the courts and the General Assembly. However, we are not professionals in the care of those with Intellectual Disabilities or Developmental Disabilities (ID/DD) and, of course, each one of you must decide the future care for your family member. We hope this pamphlet can assist you in making that decision.

Your placement options

The Settlement Agreement affords you a choice of three options. We introduce them here and, after explaining essential background, discuss the pros and cons of each option. Training Centers Virginias Training Centers are, technically speaking, state-run Intermediate Care Facilities for Individuals with Intellectual Disabilities, abbreviated ICFs/ID.1 ICFs/ID use a medical model in which doctors and staff develop a program of active treatment for each resident and Medicaid funds those prescribed treatments.
1

The federal government uses ICF/IID while the Commonwealth uses ICF/ID. 2

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While the Settlement Agreement affords you the right to choose a Training Center placement, it also permits the Commonwealth of Virginia to close NVTC and provide that placement in a different center. Both of the letters you have received indicate that Virginia intends to close NVTC and move those who wish to remain in a Training Center to another Center. However, we believe there are still uncertainties about when or whether NVTC will actually close. Community waiver funded placements Home and Community Based Services waivers offer a means of funding supports for individuals to live in the community, in a group home, in their own home, or in their familys home. Waivers are also funded by Medicaid, but each state negotiates with the federal agency managing Medicaid to agree upon a menu of supports. The waiver agreement designates what those supports will cover as well as the rates to be cost-shared with the Commonwealth. The Commonwealth can supplement both the coverage and the rates beyond these cost-shared provisions. Individuals applying for waivers must first qualify for ICF/ID placements and then waive their right to such placement in favor of an individually negotiated package of supports in the community taken from the overall waiver menu. Waivers typically cover direct care supports, most nursing, and, in some cases, day supports. But currently other supports, such as medical care and therapeutic treatments, can only be obtained separately from professionals who will accept Medicaid payments. While room and board is covered by the residents Social Security disability payments, some other supports are covered neither by waiver nor by Medicaid, for example, dental services. These supports have to be covered by other negotiated arrangements with DBHDS or your waiver provider. The second DBHDS letter describes a process for transitioning from NVTC placement into a community waiver placement. Some NVTC residents could benefit from the additional freedoms offered by community waiver placements, but current limits on staff funding and the types of supports present severe challenges in being able to adequately support those with complex medical or behavioral conditions. Before you waive your right to a Training Center placement, make sure the waiver supports will meet the needs of your resident. The person you represent is legally entitled to care comparable to what he or she is receiving at NVTC. The most recent report on implementation of the Agreement by the Independent Reviewer articulates the standard of care the DBHDS has agreed to: DBHDS has assured ARs that they will have choices of community programs that are equal to, or better than, current services. This pamphlet and the accompanying The Arc of Northern Virginia transition guide entitled Community-Based Supports, address that determination in detail. Community ICFs/ID Virginia also has community ICFs/ID run by either local Community Services Boards (CSBs) or private providers but also funded by Medicaid, just as the Training Centers are. Operators of community ICFs/ID, however, can place restrictions on who 3

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qualifies for their services. For example, some may require that each resident must be mobile rather than wheelchair bound. Community ICFs/ID are typically much smaller than NVTC and situated in more of a neighborhood setting. At present, there are very few community ICFs/ID in NVTCs region, and no more are likely to be built by March of 2015.

Guide to Community-Based Supports

Parents and Associates of NVTC thank the The Arc of Northern Virginia for preparing an extensive guide, Community-Based Supports, for those of you who choose to transition your family member into a community waiver slot. Their 67page guide, entitled Community-Based Supports, is Attachment IV to this pamphlet. Although we have not always agreed with The Arc of Northern Virginia on many issues, The Arc of Northern Virginias staff and membership have a great deal of experience and knowledge about community placements, which they are graciously sharing with us. The guide should be of great help if you are looking to see if there are adequate community supports and considering transitioning your family member to a community waiver placement. The authors of this pamphlet worked closely with The Arc of Northern Virginia for several months to refine their guide, which now addresses most of the concerns that we brought up. The guide, however, is not intended to, and does not address all of your options or the issues associated with choosing among them. That is another reason that we have written this companion pamphlet, to introduce those options and raise issues that lie outside the scope of The Arc of Northern Virginias guide.

Essential background
These are important facts to help you understand the options available to you. Settlement Agreement Requirements The Settlement Agreement between the Department of Justice (DOJ) and the Commonwealth of Virginia includes the following important provisions for Training Center residents: Offers a waiver slot in the community and a process for transitioning to the community for those who want to accept that waiver slot. Requires upgrades to behavioral stabilization services and quality management for everyone in a community placement. Assures ARs the right to choose a Training Center placement, but reserves to DBHDS the right to decide which Center will provide that placement.

The Settlement Agreement does not require closure of any of Virginia's Training Centers. The decision to close NVTC and three other Centers was a decision by the executive branch of the Commonwealth. As the judge in the case indicated, the 4

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ultimate decision whether to fund the Training Centers lies with the General Assembly. The one-page Attachment III entitled The Rights of Training Center Residents Under the Settlement Agreement, Federal Law and State Law offers more details. What is the likelihood that the closure date will be extended? As stated in its letter, DBHDS set March of 2015 as the date for emptying NVTC in preparation for closure at the end of June of 2015. This date is a purely administrative choice and could be extended or rescinded by a vote of the General Assembly, a future DBHDS administration, or as a result of a court challenge. What are the prospects that this closure date for NVTC will be extended a few years or indefinitely? While no one can answer this question with certainty, it appears as if there is a good chance the date will be extended, but it is less likely that NVTC will remain open indefinitely. Why do we say this? The community is not ready to receive all NVTC residents The NoVA CSBs and 18 major providers have said that the community cannot support all NVTC residents by the closure date, especially those with complex conditions. They say the community is not ready because: The wage rates for staff are insufficient to provide necessary supports for those with complex conditions. There are insufficient residences in the community with the accommodations, such as wheelchair accessibility, that are necessary to support most NVTC residents. Providers are unwilling to build new community residences unless there are higher payment rates and expanded waiver provisions. There are inadequate health care professional rates and coverage to support those with complex conditions. There is insufficient time to get the permits and build community ICFs/ID for those who will require this level of support.

A Joint Subcommittee of the Virginia finance committees is reviewing the viability of the DBHDS-planned closure schedule. Coming improvements to the community options Over the next 2 years, several major improvements to community options should greatly enhance the ability to support NVTC residents who have complex needs: A new waiver is being developed and negotiated with the federal government. While new waivers might be agreed upon by summer 2014, full implementation might have to wait until the General Assembly acts to 5

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increase funding. Thus, a significant extension of funded coverage and rates would not be in place until summer of 2015. Only after an improved waiver is agreed to will group home providers be willing to expand substantially capacity and offer appropriate placements for those with complex conditions. With two more years to plan, the CSBs and private providers might well build new community ICFs/ID in NoVA. Other important community enhancements will have time to be fully implemented and proven able to support those with complex needs. The needs of those in NVTC are a prime motivation for Virginia to make these enhancements to community supports. We who represent NVTC residents should be aware of these potential enhancements and ensure that the supports our family member needs are in place before we accept a community waiver placement. Prospects for NVTC remaining open indefinitely There are good reasons to keep a smaller NVTC open indefinitely as part of a local system of supports. Although there is some hope that the current situation will reverse itself, DBHDS, DOJ, the NoVA CSBs, The Arc of Virginia and those who want NVTCs land for other purposes remain committed to seeing it close. Overall, the situation is very uncertain. The best hope for keeping NVTC open would be for the state to accept its own numbers that show that far more ARs wish that their family members remain in a Training Center than the number of beds that DBHDS has put aside to accommodate that choice. DBHDSs current plan is to keep only the 75-bed Southeastern Virginia Training Center. However, by its own survey, statewide, 439 of the 788 ARs answered no or absolutely no to moving their residents into the community. At NVTC, the ARs for 55 of 135 residents are in these two categories, and another 39 only expressed a willingness to tour or receive education about a waiver placement. Given these numbers, DBHDS almost certainly will have to revise its plan, and we are working to sustain a smaller, right-sized NVTC as part of that revised plan. Another scenario for keeping NVTC open, in a smaller footprint, would be if the next governor and General Assembly were to conduct an objective and complete economic analysis to guide the deliberations. In a comparison of NVTC versus community costs for people with comparable disabilities, we believe that NVTCs economies of scale, flexibility of services, and the quality of life benefits from its many volunteers would demonstrate NVTCs superior value to the state. Such an analysis would provide an objective basis for planning integrated supports for those with ID/DD.

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September 2013

Your Options: Pros and Cons of Community Placements

The DBHDS is pushing very hard to get you to consider a community placement. We recommend that you look, as you may find a place that works well for your family member and because NVTC may no longer be an option in the future. In this changing environment, you should begin considering your options now so that you will be prepared to act if you have to do so on a short schedule later. When considering whether or not to transition your family member from NVTC into the community, we suggest you start by asking yourself the questions addressed in the remainder of this pamphlet and its Attachments, especially Attachment I, Comparison of NVTC and Community Supports.

Would your family member benefit from community placement?

A community placement should offer your family member greater freedoms of personal choice. But this also depends upon the degree to which your family member can communicate his or her needs and make decisions necessary to exercise greater freedom. A community placement might be closer by and offer more frequent contact with other family members and others who care. But this depends upon finding nearby placement or whether family and friends might move. Overall, there are people at all levels of disability who have benefited from community placement and some who have not.

How vulnerable is your family member?

NVTC offers much more robust coverage of the medical and behavioral needs of residents and provides many more protections against the risks of treatment errors, physical or mental abuse, or neglect. For example, NVTC has more professional supervision from nurses and physicians, more experienced direct care staff, and many layers of oversight to identify and remove any staff member who poses a risk of abuse or neglect. By contrast, oversight in the community depends primarily on providers willingness to report themselves for incidents and to create a staff culture to prevent incidents. There are several ways to enhance community protections; for instance, by picking a provider with a proven track record of stable employment and a culture of doing things right, involving your family member in day programs and activities enabling others to detect problems, and ensuring that staff have extensive experience and training in their positions. So, before accepting a community placement, you should seek assurance that the community will provide the supports and protections the person you represent needs. Nonetheless, the family or guardian, or other agent working on your family members behalf, needs to be quite involved in oversight by visits and other monitoring.

Can you be present for the placement process and follow up long-term?
Community placements depend upon your active participation to find and sustain adequate supports. In the transition process, ARs work with others to identify and

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then find providers for every necessary support, typically a residential waiver provider, a day support waiver provider, and health care professionals willing to accept Medicaid. This is where the The Arc of Northern Virginias guide and this pamphlets comparison of Training Center and community supports will help. Unanticipated needs or situations arising in the community will require more active participation by family, guardians, or agents than for an NVTC resident.

Are you unable to be present or follow up?

Training Center placements offer stability, even if NVTC were to close. If you or other family members are unable to be present, this most likely means that placement in another Training Center would not affect the frequency of visits to your family member. This might be important in deciding whether to transition or not. If you believe that your family member would benefit from a community placement, there are options for establishing proxy forms of help in placing and supporting your family member. Because guardians of those already in community placements also face this challenge, they have developed two different options for enduring oversight and management of your family members needs. Microboards consist of volunteers that you recruit, and they would agree to manage a corporation set up to serve your family member. Alternatively, you could retain a privately hired case manager to act as your family members advocate. Both of these options are described in The Arc of Northern Virginias guide.

Who to Trust
This is an important and difficult question to answer. It must be qualified by asking, Who should I trust for what information? since each person has different experiences, expertise, and professional or organizational constraints. Members of the board of Parents and Associates of NVTC are the least compromised by professional and organizational constraints, and we face many of the issues that you face. But we are also just learning about the community and, with a few exceptions, are not health care professionals. In general, we are concerned that the level of community supports will be considerably lower than were enjoyed at NVTC. We will look for ways to share what we learn as we learn more.

Who are the players in the transition?

Other than yourself, there are four principal players in the discharge planning process. When exploring community placement options, these players will be the primary sources of information. NVTC health professional and direct care staff We strongly encourage you to make sure these NVTC staff, who are most responsible for your family member and have the most intimate knowledge of their needs, participate in any evaluation of the condition of your family member. Having the staff 8

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present would be consistent with one element of the Olmstead decisions three prong test for determining what constitutes unjustified institutionalization, that the states treatment professionals have determined that community placement is appropriate. (The other prong that is relevant to your decision is that the transfer from institutional care to a less restrictive setting is not opposed by the affected individual) Discharge planners and social workers These planners can be very helpful in orchestrating the many aspects of the discharge process, but remember that they were hired by DBHDS to encourage ARs to accept waiver placements. Support Coordinators from CSBs Previously known as case managers, many of these professionals know the community options well. As county employees, they are less constrained by DBHDS policy and more independent than discharge planners. They will work to find a good match between your family member and providers of needed supports by helping with assessments, tours, and planning. Please note, however, that they are bound by professional ethics not to show any preference for one community provider over another. However, if asked, they could recommend which providers on the long list of alternatives you might look at first in your search for the best fit with a quality provider for supports and living arrangements. Providers of supports in the community If a provider indicates they have the ability to support your family member in a community placement, that provider will most likely present their offerings in a favorable light. Almost always providers do not accept someone they suspect they cannot support. Yet misunderstandings of the challenges have happened, and it is your responsibility, with the aid of the NVTC staff and Support Coordinator, to ask the necessary questions to assure that the provider understands and is able to give all the necessary supports. Visiting several providers gives a comparative understanding of different providers' strengths and weaknesses. If a day support provider as well as a residential provider will be part of the total support package, each might give insights into the others services. Note that Attachments I and II to this pamphlet, as well as the The Arc of Northern Virginia guide, raise issues and offer questions to explore with prospective providers.

Other players who can help

In searching for a community placement and during or after transition for those who choose the community, there are several others who can provide valuable information and support. By collecting and comparing information from all these sources, we all become more knowledgeable. You should especially identify those who would provide these supports or other forms of help once in the community and contact them for an appraisal of the proposed transition plans.

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Health professionals taking Medicaid Ask your CSB Support Coordinator who would be providing health and behavioral services, any necessary therapies, and dental care once your family member is in the community. You might consider talking with these health professionals about the types of services your family member would require and whether direct Medicaid funding would be sufficient. Since some family members might qualify under private insurance, CSB supports, or other sources, explore these as well. RCSC for dental and other services If NVTC closes, the DBHDS is planning to preserve the RCSC cadre of health professionals to serve those now in the community. You might talk with some of these professionals, who might well be current NVTC employees, to explore their confidence that they will be available to provide ongoing support. START If your family member is at all at risk for having behavioral problems that would require stabilization or special skills on the part of the direct care staff, the START program staff and respite facility were set up to provide temporary stabilization services and training to direct care staff. A conversation with START staff might be helpful. If there is any risk of prolonged acute behavioral issues or need for special living arrangements, ask how these would be provided. The Arc of Northern Virginia The Arc of Northern Virginia is very knowledgeable about the supports available in this region as well as the challenges of getting those supports. In addition to their guide, you might contact their offices at 703-532-3214. Adult protective services Adult Protective Services will investigate any suspicion of abuse or neglect. They do this confidentially. Privately hired case managers Another possibility would be to engage a private case manager to follow up in overseeing the system of supports once your family member is in a community placement. We have heard about this type of service, but do not know how effective these private agents are for continuity when other family members cannot participate locally. Page 57 of The Arc of Northern Virginias guide has contact information for Elder Care Consultants, who may be able to help directly or else refer you to other services.

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More Detailed Aids to Your Decision Making

This pamphlet has four important attachments: 1. Attachment I: Comparison of NVTC and Community Supports. 2. Attachment II: The PROOF survey guide entitled Family & Consumer Evaluation of Providers and Programs for Persons with ID/DD, from the VOR website, www.vor.net. 3. Attachment III: The Rights of Training Center Residents Under the Settlement Agreement, Federal Law and State Law, prepared by the Parents and Associates of NVTC. 4. Attachment IV: The Arc of Northern Virginias transition guide, CommunityBased Supports, contains a wealth of reference information and useful advice.

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ATTACHMENTS

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ATTACHMENT I
Comparison of NVTC and Community Supports

This attachment highlights those supports offered at NVTC that are offered in a different manner or not at all in the community. You should be aware of these differences.

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Attachment I: Comparison of NVTC and Community Supports

Parents and Associates of NVTC compared those supports available to NVTC residents with corresponding supports in the community. We found that the two systems of supports are quite different and there are a few gaps in the community system. That does not mean that community placements would not have great benefits for some NVTC residents. We suggest you consider the cautionary aspects presented here as things to examine in exploring community options rather than a condemnation of community placements. We will comment on community ICF/ID placement options as well, and where we do not mention community ICF/ID coverage, we assume it as comparable to NVTC coverage. Note that a community ICF/ID provider might apply special restrictions on the services they offer, so be certain to ask about any restrictions. For the greatest detail on the community we refer you to the The Arc of Northern Virginia guide, Community-Based Supports.

Emergencies and stabilization

Major medical or behavioral episodes require hospitalization for both NVTC and community ICF/ID residents. Yet there are important differences between ICF/ID and community utilization of hospitalization and behavioral stabilization services. Hospitalization for major medical and behavioral needs There is evidence that NVTC preventative services and the option for Observation Care Unit monitoring with more nursing attention prevents many hospitalizations. Ask about the risk of acute or chronic medical conditions developing for your family member without preventative care, frequent nursing visits to living areas, or periodic intense observation. Does the waiver provider have a direct care staff person familiar with your family members needs accompany the member to the hospital, as NVTC does? Todays waiver does not compensate providers for this cost, yet some do it anyway. The DBHDS also is concerned about this issue and is developing a plan. When it is in place, evaluate it, and plan to obtain these supports whenever necessary or through any private insurance the family member might have. START for behavioral stabilization Ask about the risk of needing behavioral stabilization and whether there is a high risk of needing START services. Remember, the START program is new and might not be fully mature for some time. The Arc of Northern Virginia guide includes an overview of START.

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Access to professional health care services

Doctors, therapy treatments, and some nursing services are not covered or are limited by the current waiver. Instead, community waiver residents must rely on professionals who accept direct Medicaid payments or any private insurance the family member might have. Community ICF/ID facilities with typically 8 to 12 beds have coverage just as NVTC has, but most health professionals would not be on campus. While the current waiver covers a consultation with therapists, it does not cover treatments by them. This applies to all therapists, including physical, occupational, and speech therapists.

RCSC
Community residents rely heavily on the Regional Community Support Center (RCSC) at NVTC for dental services. Those with very low mental development or with some types of behavioral issues require full anesthesia just for a simple tooth cleaning. This requires a dentist with subspecialty training. Other RCSC services might be crucial to individuals in the community, and these should be reviewed for accessibility, payment, and importance to wellbeing. We suggest you monitor the DBHDS plans to replicate the RCSC in the community.

Skilled nursing
The waiver pays for a level of skilled nursing care, but this might be inadequate for some with very intense needs. Ask about any restrictions or caps on skilled nursing services. For those requiring frequent treatments, observation, or staff supervision from a skilled nurse, community placements might not be able to afford such care under the current waiver. Other provisions and sources of funding might be required.

Transportation
Under the current waiver, there are many issues related to obtaining adequate transportation in the community. If your family member needs any of the following, ask if the community providers offer it. Does your family member need an attendant in addition to the driver, and will an experienced staff member accompany your family member to the hospital, to medical or therapy appointments, and/or to a day program, on all trips? Does the provider have its own van equipped to transport your family member? Does your waiver cover recreational activities or outings, and if not, will the provider arrange this transportation by some other means? Does the community provider rely on any specific company for transportation services? If so, what has been the providers experience with this company?

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Residential supports
Different providers are equipped and trained to serve different resident needs, so you need to find a good client-provider match. If the placement is a group home, your family member must be compatible with all those living in that home. Providers can discharge individuals in accordance with their policies and procedures if the provider can no longer support that individual, so you and your Support Coordinator would then need to find an alternative placement. Ask any potential provider about their discharge procedures and what will happen if there are serious incompatibilities or unanticipated deficiencies with the placement. Management history When considering a community provider, its proven record of quality service is critical. The provider questionnaires ask about the providers reputation, how long they have been operating, the depth of their financial resources to cope with issues that might arise, and especially their established culture of providing quality care. The DBHDS License Provider Search System is supposed to provide summary information at, http://lpss.dbhds.virginia.gov, but this web service is not currently functional. Moreover, the site notes that only reports after January 1, 2012, would be summarized. You might ask your Support Coordinator whether there are other ways of getting this information from an objective source. Staff Direct care staff will provide most of the supports and social environment for your family member. Staff retention allows them to gain experience to handle unusual situations and training in a variety of procedures, and to become familiar with your family members needs and means of communicating. A sufficient number of staff is important to avoid problems and handle crises if they should arise. Housing A well-kept house in a decent neighborhood maintains morale and indicates where management puts its resources. Also, does the house provide for aging in place by having, for example, wheelchair accessibility throughout the living space?

Day supports
Currently in NoVA, the CSBs have been subsidizing day programs for those in the community while NVTC has been paying the full rate. Those transitioning from NVTC into, for example, the Fairfax-Falls Church CSB area will lose their day program because the county will not pick up the 25 percent differential for all new discharges from NVTC. The DBHDS is aware of this problem and looking for a solution.

Assistive technology
There are limitations on budgets for assistive technology, that is, specialized equipment or modifications to equipment specifically for your family member. Therefore, if your family member needs such equipment, you must make prior

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arrangements to get it. Also, the custom equipment shop at NVTC may no longer be available in the community for future repairs or modifications.

Health and safety supervision

There are several health and safety provisions at NVTC that are unlikely to be replicated in most community placements. Consider how important these are to your family member. The many formal levels of oversight at NVTC will be replaced by occasional inspection visits. Most incidents in community provider facilities are reported by the providers staff themselves, an arrangement that seems to invite avoidance and under reporting. You should ask the provider for a copy of their policies on reporting incidents. Two awake staff on all shifts helps in many ways: evacuation during a fire for those who are wheelchair bound, someone to ask if a staff person has a question, reduction of errors in treatment, and monitoring of each other to deter abuse and neglect. You should ask the provider about financing to sustain at least two awake staff on all shifts. Can the provider assure you of two awake staff at all times, or do funding limits preclude this? Longevity on the job works to purge those who are unfit and enables staff to accumulate training and experience, reducing frustration and poor judgment in crisis situations. You should ask prospective providers to tell you what their staff turnover rate is, as well as how long the most experienced staff member on site has been there. Provider management should encourage all staff to identify and fix problems rather than ignore or cover them up. In conversations with provider staff, you should try to understand their culture with regard to being proactive in finding and engaging problems rather than becoming defensive and offering excuses.

ATTACHMENT II
The PROOF Survey Guide, Family & Consumer Evaluation of Providers and Programs for Persons with ID/DD
This survey guide was developed to aid guardians and ARs of the ParentRelative Organization for Oakwood Facilities, Inc., a VOR affiliate in Kentucky. It is posted on the VOR Web site at http://www.vor.net/get-help/community-resources/192-community-serviceschecklist.

PROOF Parent-Relative Organization for Oakwood Facilities, Inc.

Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD What should I be looking for in a community based provider and residential program? November 30, 2007 Introduction In early October PROOF sent a letter to all Oakwood families, parents and guardians about the increased effort by Bluegrass Oakwood to educate us about community based options. Shown below are two paragraphs from that letter (underlines added for emphasis).
The purpose of these educational events is 1) to make us more aware, more informed parents, relatives and guardians, 2) to help insure that Oakwood remains in operation and, 3) to satisfy the U.S. Department of Justice. Strictly speaking, the goal is education, not to transition our loved ones to a community-based service. Any transition should occur only with the approval of the parent or guardian after a lengthy period of intense scrutiny of available community options. Some events are designed to educate us about community options. Please be assured that PROOF is committed to the on-going support and advocacy of Bluegrass Oakwood ICF/MR. We see the absolute necessity of the Commonwealth providing Oakwood as a choice for some portion of Kentucky citizens with developmental disabilities. However, as advocates, we should become informed about all available choices.

Sometime in early 2008 the Kentucky Money Follows the Person (MFP) program, Kentucky Transitions, will most likely be approved by CMS. When this occurs, the emphasis on transitioning to community based services will only increase. Families, parents and guardians have many things to consider when evaluating competing choices. Every person viewing a program sees different areas of importance and priority that determine whether that program and provider are acceptable or unacceptable. It is a very personal choice. We continue to suggest a lengthy period of intense scrutiny. To aid in that process you may want to use these questions as part of your evaluation. PROOF thanks Polly Spare, Past President of VOR, for her early work in creating these questions [and Anne Montgomery, PROOF, for her administrative help]. Thanks to the Council on Mental Retardation, Louisville, KY, for providing help with Section 6. Disclaimer PROOF, Inc, its members, and its directors do not warrant or guarantee that the use of this document will result in a satisfactory placement for your loved one. The questions are an incomplete list of questions. Please modify, delete and add questions to meet your specific needs.
____________________________________________________________________________________ P.R.O.O.F President, The Communities at Oakwood, 2441 S. Hwy. 27, Somerset, KY 42501 Phone: (606) 677-4068, Fax: (606) 677-4148

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD General Suggestions 1. Visit the home or facility in pairs, one to question and take notes, and one to observe. 2. Schedule one or more visits for times when the current clients are there. 3. Request another visit if you dont get to see everything. 4. When you leave, compare notes and impressions with your partner. 5. Keep in mind that what you see is usually the best of the program. 6. DO NOT SIGN ANY AGREEMENT TO MOVE YOUR FAMILY MEMBER until 1) you have allowed yourself ample time to investigate the new placement and, 2) all your questions have been answered to your satisfaction and, 3) you have in writing and fully understand the transition process including any right you may have to change your mind. 7. PRIOR TO SIGNING ANY AGREEMENT TO MOVE YOUR FAMILY MEMBER, you may wish to consult with a lawyer concerning the legal rights of your loved one. 8. See Section 13 Words of Caution for Parents & Guardians. Section 1 The Provider 1-1 Provider Corporate Headquarters Name, Address & Phone # ? 1-2 Provider Local Headquarters - Name, Address, Phone #, Contact Person Name & Title? 1-3 What is the type of provider organization for-profit corporation, not-forprofit organization, partnership, sole proprietorship, etc. 1-4 How long has the provider been in business in Kentucky? 1-5 In which cities does the provider have homes and how many homes does it have in each city? 1-6 How many provider homes are in the same neighborhood or subdivision as the home you are considering? 1-7 Does the provider have a current license? If yes, for how many homes and clients? Has it ever been revoked or suspended? 1-8 What is the length of the current certification in months? 1-9 Please provide the dates and the number of discrepancies for the past three CHFS inspections. 1-10 Who (besides the provider) inspects individual homes? How often? Personal Notes & Observations

November 30, 2007

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 2 The Home Personal Notes & Observations 2-1 What is the address (street, city, state & Zip) and phone # at the home? 2-2 What is the name, title and phone # for the primary parent contact(s) at the home? 2-3 What is the distance from this home to my home? 2-4 How easy is it to get to the home? 2-5 Is the home rented, leased or owned by the provider? If leased for what period of time? 2-6 What happens when the lease is up? 2-7 If rented or leased are there plans to purchase? 2-8 How does a monthly rent/lease increase affect the client charges? 2-9 Is the home all on one floor level? If not explain. 2-10 How many clients and bedrooms? 2-11 Does the provider ever place two or more clients in a bedroom? 2-12 How many bathrooms? 2-13 Are there safety rails in the bathroom? 2-14 Is the hot water temperature controlled at a safe level? What is the hot water temperature? 2-15 Is the home well constructed? 2-16 What year was it built? 2-17 Does it have smoke alarms? If yes, where? 2-18 Does it have a fenced yard front and back? 2-19 Is it centrally air conditioned and heated? 2-20 What types of door locks are used? Can they be unlocked without a key? 2-21 Are there screens in the windows? 2-22 Are there two or more outside exits? 2-23 Is the home comparable to other homes in the area? 2-24 Is the outside of the home attractive and in good repair?

November 30, 2007

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 2 The Home (continued) 2-25 When you enter the home how does it smell? 2-26 How would you describe the appearance of the home on the inside clean, fresh paint, good furniture, etc.? 2-27 As you observed the home, in your opinion, would the home meet state and local standards for health and safety? 2-28 Who is responsible for home repairs? 2-29 Are any ramps in place? 2-30 Is there a clothes washer and dryer in the home? 2-31 Is it coin operated? If yes, who pays? 2-32 Who does the laundry for the client if they cant do it? 2-33 If staff does the laundry have they been trained to properly care for clothing? 2-34 Who is responsible for cleaning the home? 2-35 How often and by whom is the home inspected for cleanliness? 2-36 What other home inspections and oversight does the provider regularly use to insure the proper operation of the home? 2-37 Are all medications kept locked? Please describe. 2-38 Are all cleaning supplies and bleaches kept locked? Please describe. 2-39 How far does the client travel to his/her day program central point? 2-40 On average how many miles does the client generally travel during the week for outings, recreation, work, activities, etc. 2-41 How far does the client travel to see a doctor? Please indicate for each specialist normally seen by the prospective client. 2-42 How far is it from the home to the hospital or hospitals used by the provider? 2-43 How far does the client travel to his/her church? 2-44 How is the residential program funded? Please describe. Personal Notes & Observations

November 30, 2007

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 2 The Home (continued) Personal Notes & Observations 2-45 What is the per diem charge? Is any of this charge currently subsidized by the provider? If yes, please explain. 2-46 Who monitors the residential program? 2-47 How often do they monitor? 2-48 Are written reports filed by the monitors? 2-49 Who receives these reports? 2-50 Are all reports such as monitoring, accidents, evaluations, available to parents and legal guardians? Section 3 The Staff 3-1 What are the educational and other qualifications necessary to be hired as a Direct Support Professional (DSP)? 3-2 How is the DSP trained initially upon hiring? Describe the type and length of all training. 3-3 What areas/topics are covered in training? 3-4 Is there a structured plan for continued training? 3-5 Please describe the typical advancement path for the DSP. 3-6 Please describe the employment benefit package for the home DSP. 3-7 How many staff members are present in the home for each shift (1-3)? 3-8 Is a Supervisor onsite? Whether onsite or not, how many homes is the Supervisor in charge of? 3-9 How many hours per day and hours per week does the staff work usually? In special situations? 3-10 Is the home staff ever allowed to sleep while on duty? 3-11 Is the staff allowed to smoke or use other tobacco products in the home? Personal Notes & Observations

November 30, 2007

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 3 The Staff (continued) Personal Notes & Observations 3-12 Is the staff allowed to take clients from their home on outings without prior approval from the provider and/or guardian? 3-13 What is the client/staff ratio for each shift (1-3)? 3-14 What is the staffing plan for each shift during the weekends? 3-15 What is the staffing plan for each shift during the holidays? 3-16 Does this overall staffing arrangement agree with the prospective clients preplacement plan? [Note: Be sure you have a written plan that describes staffing prior to any transition placement.] 3-17 What is the length of service for each DSP now working full time or part time in the home where my family member will live? 3-18 Does the provider staffing policies allow for the use in the home of temporary staff from a pool? 3-19 What is the length of time each DSP has worked in the home where my family member will live? Continuity is a concern. 3-20 What percent of the provider DSP staff has a length of service of 12 months or more, 18 months or more? 3-21 What is the average tenure of DSP staff for this provider? 3-22 Is the home staff made aware of special diets? 3-23 What type of training are they given in preparing special diets? 3-24 How is the home staff trained to handle seizures? What procedures are used? 3-25 How is the home staff trained to handle behavior problems? What procedures are used? 3-26 How is the home staff trained in the administration of medication? What procedures are used? 3-27 If only one person is on duty when a client becomes ill or acts out, how are the other clients supervised until help arrives?

November 30, 2007

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 4 Other Clients 4-1 What ages are the clients? 4-2 Is the age range compatible? 4-3 Are the other clients all male or all female? 4-4 Are there any clients with special needs present blind, deaf, non-ambulatory, etc? 4-5 What special provisions were made for these special needs? 4-6 When you observed the clients, how did they interact with each other? Section 5 Medical Services 5-1 Who administers medication? 5-2 What qualifications are required to do this? 5-3 How is this monitored? 5-4 Who does the monitoring? How frequently? 5-5 Is the staff trained in C.P.R.? 5-6 Is the staff trained in First Aid? 5-7 Is the staff trained in special therapies? 5-8 What experience do the provider selected hospitals have with persons with ID/DD as admitted inpatients? 5-9 Which doctors, specialists (neurologists, podiatrists, orthopedic, surgeons) and dentists are used to provide care? 5-10 Who pays for services rendered that are not covered by Medicaid? 5-11 How often are clients given medical, dental, and vision checkups? 5-12 In case of an illness, is staff available at the home to care for the client? 5-13 Who provides convalescent services after surgery or illness? 5-14 If a client is hospitalized do you provide staff to stay in the room 24/7? 5-15 How do you handle medical emergencies? Personal Notes & Observations

Personal Notes & Observations

November 30, 2007

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 5 Medical Services (continued) 5-16 After sedation for medical procedure/treatment as an out-patient, are the clients taken home or to the day program? If to the day program, are beds available for clients to recuperate? 5-17 Is staff encouraged to call 911 in the case of an emergency? Is a written policy regarding calling 911? Ask for a copy. Section 6 The Program 6-1 What are the relevant resources close to the program and are those resources utilized by clients? 6-2 Does the program/service fit well into the neighborhood or is it out of place? 6-3 Do staff members in the program represent a positive image to the community and treat clients respectfully? 6-4 Do clients have an opportunity to interact with non-disabled people in the community? 6-5 Is the program facility age appropriate for the client? 6-6 Are the clients personal appearances appropriate? 6-7 Are daily activities and routines appropriate for the age of the client? 6-8 Are clients addressed in age appropriate language? 6-9 Do clients have age appropriate possessions? 6-10 Does the program staff appear to be well trained? Is the training consistent across all program staff? 6-11 Does the program content appear to be appropriate for the students level of understanding? 6-12 How intense is the program being offered? Is it relevant to the clients need, and how much time is spent in the activity? Personal Notes & Observations

Personal Notes & Observations

November 30, 2007

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 6 The Program (continued) 6-13 Is the program space pleasant and appealing to spend time, is it safe for clients and is it comfortable? 6-14 Are the unique needs of clients recognized and are programs/services individually directed? 6-15 What is the quality of interactions between clients and staff, staff and staff, clients and clients, and does staff encourage and develop adaptive and appropriate interactions? 6-16 Does the program use services that are utilized typically by the general population (doctors, recreation programs, outpatient centers, adult education programs, transportation services, churches, etc.)? 6-17 Are consumers (clients and their families) and the public involved in the organization serving the client? For example, parents and/or consumers on the board or committees, advisory roles, etc. 6-18 Is the program or service innovative? 6-19 Does the program have any working relationships with local or regional colleges and universities? 6-20 Does the program make an effort to education the public about ID/DD issues and/or the needs of children and adults with ID/DD? 6-21 How is the program licensed? Is it an ICF/MR, waiver program, or solely state funded? 6-22 If the home is licensed as an ICF/MR does the provider have a history of converting ICF/MR homes to waiver homes? 6-23 What are the funding sources for the program? 6-24 Is there more than one source of funding? 6-25 What happens to the client, if funding is cut back? Personal Notes & Observations

November 30, 2007

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 6 The Program (continued) 6-26 What indoor and outdoor recreational activities are available? Are clients offered choices? 6-27 Does the program have adequate transportation available for all program activities? 6-28 If one client is restricted due to illness or behavioral issues will the other clients be denied the opportunity to participate in programs or recreational activities? 6-29 If one client is restricted due to illness or behavioral issues, or just doesnt want to go, will the other clients be denied the opportunity to attend church? 6-30 How often are special activities planned? Who pays for the activities? 6-31 How are clients transported? 6-32 How much supervision is provided? Personal Notes & Observations

Section 7 Money & Allowances 7-1 How are client funds handled? 7-2 What financial reporting do parents receive? How often are reports provided? 7-3 Who is the payee for government funds paid on behalf of the client? 7-4 Please describe the financial reporting required of parents or guardians in your system of care? 7-5 Who buys clothing for the client? 7-6 Who buys personal care items for the client? 7-7 What is the amount of the allowance for incidentals provided for the client? 7-8 Who decides what this amount should be? 7-9 Who pays the allowance? (Suggestion you negotiate a proper allowance amount?)

Personal Notes & Observations

November 30, 2007

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PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 8 Client Training & Employment 8-1 Will the day program involve job/skill training and/or employment? 8-2 What percentage of clients is employed in the community? 8-3 Do all clients who are capable of employment in the community have jobs? If not, why not? 8-4 What options are available for the client in the area of job/skill training? 8-5 Is the client or the legal guardian involved in the choice of training and employment? 8-6 Did you visit both the day and residential program? 8-7 Is the work compatible with what my family member has been doing? 8-8 Is it compatible with my family members abilities and skill level? 8-9 How long is the work day? 8-10 What breaks are planned? 8-11 What are the pay goals? How is pay calculated? 8-12 What is the workplace ratio of staff to clients? 8-13 What is the overall goal for the work effort supported work, independence, etc? 8-14 Do you agree with the goals? 8-15 How often are these goals reviewed? 8-16 Did the provider conduct any testing prior to accepting your family member? 8-17 What were the results? Did you get a copy? Personal Notes & Observations

November 30, 2007

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PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 9 - Education 9-1 If your family member is under 21 years of age he/she has a right to education under federal law. 9-2 What school would he/she attend? 9-3 How many students would be in the classroom? 9-4 Is a separate special education option provided? 9-5 Are special education students mainstreamed with regular classes? 9-6 Is the teacher certified is special education? 9-7 How many teachers and aides are in the classroom daily? Provide a count of each please. 9-8 Does the teacher coordinate planning and training with the residential program? 9-9 Are related services offered such as P.T., O.T., and speech therapy? 9-10 Who provides transportation to and from school? 9-11 Who provides meals? Are special diets observed? 9-12 Is this a 9 or 12 month education program? 9-13 If 9 months, what happens the other 3 months? Section 10 Menu & Food Preparation 10-1 How much money is allocated for each individuals meals per week? 10-2 What is purchased with the food budget? Is it food only, or are cleaning supplies, laundry detergent, toilet paper, paper towels, etc. purchased with that money in addition to the food? 10-3 How are meals for staff paid for? 10-4 Who prepares the menu? For what period of timesuch as weekly or monthly? Personal Notes & Observations

Personal Notes & Observations

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12

PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 10 Menu & Food Preparation Personal Notes & Observations (continued) 10-5 What types of special diets are available? 10-6 Who monitors this process? 10-7 Does the provider have a dietician or food consultant? 10-8 Who cooks the food? If staff, have they been trained in cooking/handling food properly. 10-9 Have they been provided recipes for preparing meals that are indicated on menus? 10-10 May I see the menu for the past two weeks? 10-11 How often are frozen meals served? 10-12 How often is food from fast food restaurants served at meal time? 10-13 Did you observe that the food served in the home was nutritious and well balanced (fresh vegetables, fruit, etc.)? 10-14 Is the kitchen equipment adequate? 10-15 Is there a dishwasher installed? 10-16 Is the food area clean? 10-17 Is the menu posted? 10-18 Does the food served match the posted menu? (It is wise to visit at mealtime.) 10-19 Are the refrigerator, freezer and pantry adequately stocked? Section 11 Admission & Discharge Personal Notes & Observations Policies 11-1 For what reason would a client be discharged from the home (behavior, medical, elopement, reclassification?) 11-2 Who makes the decision on discharges? 11-3 Will the parent or guardian have a voice in the decision?

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PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD Section 11 Admission & Discharge Policies (continued) 11-4 If community living proves to be wrong for my relative, will he/she be allowed to return to his/her prior placement? Please provide a written statement to that effect, and name the state authority or reference that backs up your position. 11-5 If a client is reclassified, and there is no bed space available, what happens to the client? 11-6 How long can a client be on furlough from the home? How often? 11-7 May I have a copy of your written Due Process policy? Personal Notes & Observations

Section 12 Questions for Parents & Personal Notes & Observations Guardians 12-1 After placement, will we be allowed to visit without prior notice? If not, why not? 12-2 Prior to placement, will we be allowed to visit without prior notice? If not, why not? 12-3 Will I be notified immediately if my family member becomes ill, or is injured, or needs hospitalization, or runs away? 12-4 Is there a family association that meets regularly? Will the provider help facilitate the organization of a family association? 12-5 Will all services, programs, and funds be in place and secure before my family member is moved? 12-6 Have you been appointed by the court as legal guardian? Can you prove it?

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PROOF Family & Consumer Evaluation of Providers & Programs For Persons with ID/DD

Section 13 - Words of Caution for Parents & Guardians 13-1 Get all pertinent information in writing including a pre-placement transition plan. 13-2 Ask for copies of all state regulations regarding client rights, parental rights, and due process rights or due procedure rights. 13-3 If you are told that something will happen or will be provided, get it in writing prior to accepting placement. Once enrolled in a program, use annual and semi-annual reviews to document promises kept and not kept. 13-4 After placement, visit on an irregular schedule, unannounced. BE OBSERVANT! 13-5 Be cooperative, listen to what is said, but do not agree to anything that seems irregular or may endanger the clients rights to health, safety, and program. 13-6 Dont sign ANYTHING, particularly room and board contracts, if you are not totally satisfied. The one exception is the form for emergency medical care. BE SURE that it is a separate form, not part of any overall release. 13-7 You are not responsible for damage to property or liability insurance that protects the provider. 13-8 Be sure you understand how funding is obtained for the program. Is it ICF/MR? Supports for Community Living? 2175 Waiver? Pure state dollars? Today, almost all states share costs with the Federal Government to maintain community placements. The cost to the resident will vary according to the type of program. BE SURE you know how much of his/her monthly benefits is assessed for room and board. 13-9 If you are considering placement with the provider with whom you conducted this interview, take this completed form to the administrator or owner of the program and asked for his/her signature. Keep this signed document with your records. 13-10 Ask to see the current SCL Policy Manual. Spend time reviewing the manual. 13-11 Do not be intimidated. Do not allow anyone pressure you into making a decision quickly.

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ATTACHMENT III
The Rights of Training Center Residents Under the Settlement Agreement, Federal Law and State Law
This attachment was prepared by the Parents and Associates of NVTC for all of the Training Center family groups in Virginia.

The Rights of Training Center Residents Under the Settlement Agreement, Federal Law and State law
(1) The right of resident choice under the Settlement Agreement. The Agreement provides the residents, and their Authorized Representatives acting on their behalf, the right to either move into a community placement or remain in a Training Center:
Nothing in this Agreement shall prevent the Commonwealth from closing its Training Centers or transferring residents from one Training Center to another, provided that, in accordance with Virginia Code 37.2-837(A)(3), for as long as it remains effective, no resident of a Training Center shall be discharged from a Training Center to a setting other than a Training Center if he or his Authorized Representative chooses to continue receiving services in a Training Center.

(2) The right of choice is protected by federal law. The Americans with Disabilities Act (ADA) specifically states that no one can be forced to take a placement they do not desire: Nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit provided under the ADA or this part which such individual chooses not to accept. 28 CFR 35.130(e)(1) In interpreting the ADA, the Supreme Court in Olmstead v. L.C. established a 3-part test for when institutionalization is unjustified for individuals with disabilities: (a) The States treatment professionals have determined that community placement is appropriate; (b) The transfer from institutional care to a less restrictive setting is not opposed by the affected individual; and (c) The placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities. (emphasis added) Olmstead v. L.C., 119 S. Ct. 2176, 2181 (1999). Virginia, in implementing the Agreement, must also comply with Medicaid law that requires the provision of certain specialized services, including but not limited to health care and active treatment, which is individualized skill-training to allow each individual to function as independently as possible and not regress in abilities. (3) The right of choice under Virginia law. Judge Gibney also cited the rights of residents to refuse discharge under Virginia Code 37.2-837(A)(3), for as long as it remains effective. The Code section, which cites federal law as the reason for its existence, remains in effect. Virginia Administrative Code also affords authorized representatives the right to make their placement decisions free from pressure by the DBHDS or other state employees. It defines consent as: the voluntary agreement of an individual or that individual's authorized representative to specific services. Consent must be given freely and without undue inducement, any element of force, fraud, deceit, or duress, or any form of constraint or coercion. 12 VAC 35-105-115 (emphasis added)
Provided by Training Center Families: Jane Powell for CVTC, pashabean@verizon.net; Jane Anthony for NVTC, janthonyjane@comcast.net; Wanda Robinson for SWTC, theredhead@embarqmail.com; Judy Scott for SVTC, judith.scott@yahoo.com

ATTACHMENT IV
The Arc of NoVA Transition Guide, Community-Based Supports
This guide was prepared for us by the Arc of Northern Virginia. It is an extensive 67 page reference document containing a wealth of information and useful advice.

Community-Based Supports
Transition planning information and options to assist all individuals in living safe, healthy and independent lives in their communities

Presented by The Arc of Northern Virginia in collaboration with the Virginia Ability Alliance Printed Summer 2013

Table of Contents The Purpose of this Guide .................................................................................................................................. 4 EXECUTIVE SUMMARY ....................................................................................................................................... 5 INTRODUCTION ..................................................................................................................................................... 7 What is Community Transition?................................................................................................................. 7 Why Look at Transition? ............................................................................................................................... 7 Tough Questions .............................................................................................................................................10 Transition Stories...........................................................................................................................................12 Tim Finds a Home......................................................................................................................................12 Peters Smile ................................................................................................................................................16 RJ Moves Back to the Community .......................................................................................................17 What is the DOJ Settlement? ......................................................................................................................19 What Does the DOJ Settlement Mean? ...................................................................................................19 Appropriate Supports ...............................................................................................................................20 HOW TO PREPARE FOR TRANSITION ........................................................................................................22 Who Will Help with Transition? ...............................................................................................................22 Regional Support Teams .............................................................................................................................23 How Do We Make Plans? .............................................................................................................................24 Transition Timeline .......................................................................................................................................25 Person Centered Plans .................................................................................................................................26 Supports Intensity Scale (SIS) ...................................................................................................................26 Guardianship, Conservatorship, and Authorized Representatives.............................................28 Is a Court Appointed Guardian (CAG) the same as an Authorized Representative (AR)? .31 Is Guardianship the same as a Will?........................................................................................................32 Guardianship Across State Lines ..............................................................................................................32 WAIVERS ................................................................................................................................................................33 What is an Intellectual Disability (ID) Waiver? ..................................................................................33 ID Waiver Services .........................................................................................................................................34 Money Follows the Person (MFP)............................................................................................................38 Types of Residential Supports ..................................................................................................................39 Medicaid and Waivers ..................................................................................................................................42 Medicaid and Special Needs Trusts .........................................................................................................42 PROVIDERS AND THEIR SERVICES .............................................................................................................44 Northern Virginia Service Providers ......................................................................................................45 Pre-Tour and Post-Move Processes ........................................................................................................47 Provider Checklist ..........................................................................................................................................49 MICROBOARDS ....................................................................................................................................................51

What is a Microboard? .................................................................................................................................51 Why Use a Microboard? ...............................................................................................................................51 How Do I Learn More about Microboards? ..........................................................................................52 Glossary ..................................................................................................................................................................53 APPENDIX A- CONTACTS .................................................................................................................................56 APPENDIX B- START ..........................................................................................................................................61 APPENDIX C- POST-MOVE MONITORING SCHEDULE..........................................................................63 APPENDIX D- LIMITED GUARDIANSHIP/CONSERVATORSHIP AND ALTERNATIVES ...........64 APPENDIX E- DIFFERENCES BETWEEN AUTHORIZED REPRESENTATIVES AND GUARDIANS ...........................................................................................................................................................65 APPENDIX F- COMMUNITY RESOURCE CONSULTANTS .....................................................................66

The Purpose of this Guide

The purpose of this guide is to provide information on the process of transitioning from a public Intermediate Care Facility (ICF), like Northern Virginia Training Center, to the community. It is certainly not going to answer every question you may have, but our hope is to help families obtain basic information as they start planning for their loved ones. If you are a parent or family member who lives out of state or out of the area, pay attention to the text highlighted in green to read about how your planning process may be slightly different. Also, look for this puzzle piece logo throughout the guide. It will discuss how planning may go awry at each stage and what you can do to get things back on track.

We have made every effort to ensure that the information is correct, but we welcome any corrections or additions you may have. This guide is designed to be helpful, so we would like your ideas on what else you would like to know. Please email corrections or ideas to Lucy Beadnell, Director of Advocacy at The Arc of Northern Virginia, at Lucy.Beadnell@TheArcofNoVa.org.

TIP: These blue boxes are used throughout the guide to help provide extra information and tips.

EXECUTIVE SUMMARY Transitioning from a training center environment into community-based supports is a big change not only for the individuals who move, but also for their families and loved ones. Services in the community involve working with a large number of partners and agencies. Your loved ones entire support team will no longer work for the same agency or work on the same campus. This guide is meant to help you start figuring out what your loved one will need, how you can be involved in the transition process, and who else will be involved in making sure your loved one is safe, happy, and healthy. No guide can answer every question you have. Each person, each family, each situation is a little different. However, this guide should help get you started in the right direction. The guide begins with stories of some individuals who have transitioned so you can start to learn a little from the experiences of others. We hope to grow this section and would like you to share your story with us once your loved one is settled into their new home. The guide provides an overview of the Department of Justice Settlement with Virginia. It is important to understand this settlements intention and provisions since this is what will govern a lot of the changes Virginia is making to ensure your loved ones transition is successful. From there, explore the How to Prepare for Transition section to learn more about the individuals who will help plan for your loved ones transition and those who will be involved in long term supports. While working with this team, youll get to know the Person Centered Planning process used in Virginia to plan for support services. As a team, you will conduct comprehensive assessments of the needs for health, safety, and quality of life of the individual moving to find the best new home for them. Before transition is complete, you also need to understand the roles of guardians and how legal authority changes in a community setting. This section explains guardianship and authorized representatives. Your loved ones support team will likely be using a Medicaid Waiver to fund their community-based services. The Waivers section summarizes the purpose of waivers and the services offered through waivers. It also discusses the role of Medicaid, financial limits, and a Special Needs Trust to protect benefits and services. Once you have an understanding of the services offered under the Waiver, look to the Providers section to explore who may be able to provide the services your loved one will need. Explore the checklist to begin thinking about the questions youll ask these providers to make sure they are the right fit. If you feel that you would like a bigger support team or you arent able to be the lead advocate for your loved one, consider a Microboard. The Microboard section explains how you can build a circle of support around your loved one to share duties and information. Finally, the guide offers helpful contacts and more detailed information about guardianship and crisis services.

It is our hope that your story and the lessons you learn during transition will be shared with us and become a part of this guide in the future. Look for updated editions often in the coming years.

INTRODUCTION What is Community Transition? Transitioning to community-based supports is the process in which a person with a disability moves from a training center (sometimes called an institution or an Intermediate Care Facility, ICF/ID) or a nursing home into an integrated community setting to receive supports. To receive services in a community setting, an individual waives the right to receive supports in a training center or other ICF/ID, and chooses instead to have services funded through a Medicaid Waiver (see page 33 for more on Waivers). The use of Waivers has grown greatly over the last 40 years, thus allowing the increasingly common process of transitioning to community based supports. More and more individuals have found that though community supports may not have been a viable option for them in the past, the use of Waivers and the growth of the support options available in the community have made it possible for them to transition. Why Look at Transition? Many families had imagined that their loved ones would continue to receive supports in a training center setting for the rest of their lives. The focus in Virginia on transition may leave you wondering, Why transition? Here are some of the reasons for transitioning and the benefits of doing so. The individuals who leave the training centers during the term of the Department of Justice settlement with Virginia (a ten year settlement that started in 2012) will be able to take advantage of a system designed specifically to help them transition successfully. This system began development immediately after the settlement was designed and will continue to evolve over the coming decade (See page 19 for more details on the settlement.).

Michael loves his home and his housemates. . . He has become more social and fed himself for the first time! All his friends applauded and he was so proud. -Cindy Taylor, a mom speaking about her sons transition to the community after leaving a Virginia training center

Virginias Department of Behavioral Health and Developmental Services has released a plan to close four out of five of Virginias Training Centers and to reduce the size of the fifth to seventyfive beds. The Northern Virginia Training Center is scheduled to close on June 30, 2015. Both anecdotal evidence and academic studies have shown that people who successfully move to high quality, well-planned community-based care experience benefits. We invite you to go to the link below and watch the video made by the Department of Behavioral Health and Developmental Services (DBHDS) in late 2011. It tells the stories of several people who moved to community living after leaving Virginias state training centers. Some people became more social, had decreases in behaviors, and developed new friendships.

They all experienced an increase in community involvement and were happy with their move. http://www.youtube.com/watch?v=ubHxrwmtVtI&feature=plcp In 1999, researchers evaluated 38 published studies that examined outcomes associated with moving from institutional to community based living. The review found that adaptive behavior almost always improved in community-care settings.1 Another review of 11 studies indicated that personal care skills, communication skills, social skills, and physical development improved significantly in some cases.2 An additional benefit of moving to a community-based system of care is less measurable, but no less important. Individuals moving to private homes in the community often have their own rooms, greater freedom to have walls painted and rooms decorated to meet their interests, and have a sense of belonging in a small and homey setting. For individuals who have never lived in a home setting or have not done so for many years, this can be a wonderful opportunity. For those people who have their own private rooms now, the feeling of a smaller setting can also be beneficial. Virginia is becoming one of many states to focus on community-based living. Seven states, including the District of Columbia, have no public or private facilities larger than 16 beds for people with developmental disabilities.3 Five other states have no public institutions, and have between 1-11 private facilities with 16 beds or more.4 Many other states have closed at least one large state institution and have also focused on downsizing institutions in favor of community-based supports to provide opportunities for greater independence for individuals receiving supports and to realize possible cost savings. This is worth noting since it shows that in several states, every single person, no matter the significance of their disability, is being served in the community. In Virginia alone, the population of training centers has declined from its peak of about 6,000 residents to 885 residents as of January 2013.5 By moving to a community supports model, Virginia is working towards a future where all people with disabilities are living as independently as possible in home settings and are contributing members of their communities. Community-based supports also tend to be more cost-effective than care in state facilities. At a January 2013 hearing at the General Assembly, Commissioner Stewart noted that more community services will need to be increased and that any cost savings from closing training centers will be put towards additional safeguards and supports in the community
Kim, S., Larson, S. A., and Larkin K.C. (1999) Behavioral outcomes of deinstitutionalization for people with intellectual disabilities: A review of studies conducted between 1980 and 1999. Policy Research Brief (University of Minnesota: Minneapolis, Institute on Community Integration), page 1. 2 Kim, Larson, and Larkin, page 1-2. 3 Larkin, Larson, Salmi, and Webster (2010). Residential Services for People with Developmental Disabilities: Status and Trends Through 2009 (p. 34-35) 4 Larkin, Larson, Salmi, and Webster, p. 34-35. 5 Commissioner Stewart, TACIDD meeting, 6/15/12. Available at www.dbhds.virginia.gov/ODS-TACIDD.htm
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mandated by the DOJ Settlement.6 This is an exciting move as community-based supports were historically underfunded, a problem that had led to some individuals seeking out training center placements in the past. It is important to understand that Virginia is legally obligated to fund all of the supports in the settlement, regardless of any cost savings realized from closing state training centers. Lastly, Title II of the Americans with Disabilities Act (ADA) 42 U.S.C. 12132 and the Supreme Courts Olmstead v. L.C. decision, 527 U.S. 581 (1999) require that individuals receive services in the most integrated setting appropriate to their needs. That means that everyone has the right to integrated, TIP: community-based supports, no matter how If you do not use a complex their needs may be. It should be noted computer at home, that these decisions do not allow individuals to consider going to your be moved without their consent or the consent local librarys reference of their legal representatives. These doctrines focus on working with individuals to help them desk for help visiting the identify the right home in the community for websites in this guide and supporting their needs. locating other online In February of 2011, the United States libraries even offer free Department of Justice submitted a findings printing. letter to the state of Virginia that noted the Commonwealth had failed to provide integrated services and that the system of transitioning people to community-based care must be improved.7 The result of that letter was a year long negotiation and a legal settlement that will improve community supports and assist individuals in transitioning from training centers to their communities.

information. Some

Commissioner Stewart, Sub Committee Hearing presentation Virginias Implementation of The Settlement Agreement with the U.S. Department of Justice, 1/11/13. 7 DOJ Findings letter, page 1. Available at www.dbhds.virginia.gov/settlement.htm
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Tough Questions You may have started reading this guide and thought Well, Im glad that transition worked for someone else, but our situation is different. It is true that the stories in this guide or the examples we give may not apply to your situation. Everyone is different and you will likely experience different hurdles and different benefits during your transition. These stories and this guide are here to remind you than transition can be done, it can be done well, and it has been done well many times before. Your path will be unique, but you are not alone. Everyone who has ever transitioned was once in a state facility because they had needs that could not be met well by their community. The thousands of people who have left have done so because the right community placement was available. Even though people tend to find the right home in the long-term, it is not a simple or quick process. Many families have expressed concerns about their new responsibilities under a community-based care system. It is fair to say that many families who have loved ones in the community work very hard to make sure the supports that are in place are the best possible. It is also true that some people have no living family or only family members who are involved on a very limited basis. These people can also have safe and fulfilling lives. You are a very important member of your loved ones team, but you are not expected to know and do everything. Be as involved as you are able to be, and then work with the rest of the team to put all of the right pieces together. Recognizing that there may be a time when no relatives live near a loved one, some families have established a Microboard to oversee the other parts of the planning and long-term supports (see Microboards section for more information). Now you may be thinking But what if something goes wrong after we choose a community placement? The honest answer is that it may. In any setting at any time, something could happen to any one of us. That likelihood increases when the person involved is someone vulnerable. Unfortunately, these tragedies can happen with novice and experienced staff, in training centers and in community placements. There is no 100% preventative, but there are many ways to make sure your loved one is as safe as possible. This guide goes into these topics into more detail. The Department of Justice Settlement mandates increased training for staff and support coordinators (also called a case manager), increased oversight in all settings, increased reporting and monitoring, and rapid crisis responses. When youre selecting providers, use the checklist in this guide to make sure the person supporting your loved one already has the knowledge, skills, and abilities they will need. Visit often or have friends, relatives, Microboard members, and your support coordinator do the same. If you suspect anything may be wrong or have any concerns, never hesitate to use the yellow highlighted numbers in the contact section of this guide to get immediate intervention. For information on what to do if a provider or home is not a good fit after a move, look to the puzzle piece logos in the sections on Types of Residential

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Supports and Providers. For tips on finding providers of non-waiver services, see the puzzle piece logo on page 37. Knowing that big changes are coming, how can you build trust in those who will care for your loved one? Real trust never comes instantly, but is built over time with proven relationships and fulfilled promises. You can start building that trust now with each new provider and each person involved with supporting your loved one. Here are some of the actions you should consider: Ask them all the questions you have and share your fears. Ask them to share their experiences with similar concerns. Make sure the answers to your questions are thorough, clear, and are supported by facts. Ask providers for a list of references from other people they serve. Make sure you know who to call if you have concerns. Ask about options for unannounced visits. Ask your support team, as including the Regional Support Team) to assess barriers to placement, keeping in mind that these teams are designed to assist you in discharge planning. Most importantly, trust your instincts and if something does not look or sound right, take a step back and gather more information before proceeding. Lastly, rely on your support team. Ask for expert advice. Consider options like privately hired case manager advocates or Microboards that are addressed in this guide to offer additional assistance and oversight. For any concerns about abuse, neglect, or exploitation, you should contact Adult Protective Services (see Contacts). Some tips on that process are below. You do not need to be certain of abuse nor of who may have been the perpetrator. APSs job is to investigate any and all concerns. You can ask that they keep your name or identifying information out of the investigation if you would like. You may often find that service providers have already called APS and licensing offices to report any concerns even before you do. Providers risk their license to operate by not reporting any concerns immediately. Good providers never hesitate to make that call, want to know if there is a problem, and are thankful for families who help them identify and resolve problems. For tips on finding good providers, visit the Providers and Their Services section. You can also look online to see past investigations and findings at http://lpss.dbhds.virginia.gov/.

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Transition Stories

The following stories were generously shared with The Arc of Northern Virginia to include in this guide. If you would like to include your transition story and advice, please submit it to Lucy Beadnell at Lucy.Beadnell@TheArcofNoVA.org. Updated stories will appear in future editions of this guide. If youre wondering where to turn if your transition is hitting some roadblocks, look to the puzzle piece logos in the sections on Types of Residential Supports and Providers and Their Services. Tim Finds a Home Shared by Tims father So, youre expecting a success story right? After all, its unlikely The Arc of Northern Virginia would be publishing an article about a failure. Well, youre right; it is a success story. But nothing is ever that simple. We didnt make this move on faith alone. Lets start this story eighteen years ago, when our son Tim moved a mere four miles from the Northern Virginia Training Center (NVTC), where he had lived for 15 years, to a brand new group home in Mantua, a community just outside the City of Fairfax. The ride was shorter than ten minutes, but it was a major life-changing event for Tim. It was an equally momentous event for his mother and me. Perhaps only other parents of children with disabilities can fully understand the depth of the emotional upheaval prompted by each transition in their childs life. For us, the journey began in 1964, when a doctor at the Paris American Hospital explained to my wife Linda and me that our first child, Tim, was not simply developing more slowly than other one-year-olds but had a profound disability. Later, we would learn that the specific diagnosis was Cri-du-chat (cats cry) Syndrome, a condition that results when a piece of chromosome 5 is missing. Our understanding of what this meant evolved over years. At first we were focused on what do we do now? Later, we began to realize that a more difficult question was what would happen to him when he inevitably left home. We were young. We had no relevant experience. We were overseas with the army with no one to turn to. The doctors recommendation was that Tim should be institutionalized as soon as possible. In those days, at least in our minds, doctors and priests were to us the ultimate authorities and fonts of all wisdom. Tim visiting relatives in Arkansas

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But this is not about our entire experience. It is about his move from NVTC to a group home. I am not a foe of NVTC or the concept of Training Centers. In fact, Im a pastpresident of the NVTC Parents & Associates, as well as past-president of PAIR Virginia, an organization which stands for an array of residential options, including keeping the Training Centers available for those with greater needs for support. Each individuals needs are different. In fact, they can be immensely different. It disturbs me when a blanket statement is made that life in the community is categorically better for all individuals than life at the Training Center - a position that has been frequently backed up by studies that (like all studies) may reflect preconceived notions of the sponsoring organizations rather than being based on hard data. That said, I am no longer convinced that group homes are categorically unable to provide the level of care required by even the most profoundly disabled residents of the Training Center. Further, as a result of the Department of Justice actions, the decision has been made. As parents, we were quite happy with conditions at NVTC. It had an amazingly professional and caring staff who were doing an excellent job of meeting the needs of the residents. But we were also quite aware that sharing a bedroom off of a large activity room did not represent all the comforts of home to which we are accustomed. I recall vividly one evening after a Parents & Associates meeting when I sat on Tims small bed in Building 4. I became very emotional as I realized that I could not imagine the idea of this being my own home. But we did not know of any better options, and saw the arrangement as a necessity in view of the need to provide the supports required by the population served. Then, in late 1979, we were faced with a big decision as staff nominated our son as a candidate for moving out into the community. For us, there were a lot of unknowns about his moving into a group home. We had heard horror stories about such places from Voice of the Retarded8. We wondered if Tim might end up, for example, in a home on a street corner in a dangerous part of some city. That may make us sound paranoid, but we were well aware of the fate of people with mental illness who in the 1960s were discharged from institutions as a result of well-meaning but underfunded programs, only to find themselves homeless on the streets of towns and cities across the nation. We were also concerned about the potential for abuse in a small setting with limited staff. But Linda had worked for Adult Protective Services, and we were aware that no setting is immune to possible abuse. In fact, Tim had been the victim of physical abuse at NVTC on at least one occasion. Still, we had first-hand knowledge and confidence when it came to NVTC, but no such familiarity with group homes. Fortuitously, NVTC staff put us in touch with Chimes, a Baltimore-based organization providing a wide variety of services for people with disabilities. Im sure there are many excellent providers throughout our area, but as luck would have it, I had personal knowledge of Chimes track record. I worked at NISH, a national organization that helps non-profit agencies throughout the U.S. obtain federal contracts providing employment opportunities for people with disabilities. I knew that Chimes had an exemplary record of
8

Note: Voice of the Retarded has since changed their name to VOR, dropping the use of the term retarded.

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performance in this program, and had come to know some of the senior Chimes management personnel. Chimes was founded by a group of parents who originally provided services in a church basement. Over the years, the professional staff has worked hard to maintain that original level of devotion and commitment in providing a high quality of life for the population they serve. Chimes was in the process of opening their first group home in Virginia. Linda and I were invited to tour their existing homes in Maryland and Delaware, and returned home thoroughly convinced that our son would be better served by moving to the new home. I should point out that Tim did not require any special medical support then or now, but residents of many other Chimes homes do require - and receive - very specialized care.

Tim visits the Grand Ole Opry

So we made the move, fully expecting Tim to experience some emotional turmoil as he adjusted to his new digs. Instead, thanks to an excellent transition procedure jointly established by NVTC and Chimes staff, he adjusted immediately. Some of his friends from NVTC moved in at the same time, so he saw familiar faces. For the first time in many years, he was no longer sharing a bedroom. He was eating in the dining room that looks like any other dining room in the neighborhood. He was relaxing in the glider on the back deck. In short, all of our hopes were met and none of our fears were realized. He eagerly boards a van five days a week to go to his job at ServiceSource (formerly Central Fairfax Services) in Alexandria. On weekends he usually visits his mom and me at our home in Annandale or he participates in activities organized by the group home. He loves coming to our place to visit with family, but also loves returning to his home on Sunday afternoon to get ready for work the next day. Ive had the opportunity to serve on the Chimes, Virginia Board of Directors for several years. This has given me a terrific insight into the organizations values and practices. It has also allowed me to see first-hand the planning and attention being given to providing the necessary supports for an aging and increasingly medically fragile population. Like all parents, Linda and I do not look forward to the day when we are no longer available or able to play an active role in Tims life. But we have confidence that the dedicated professional staff will continue to provide him with a good quality of life. To me, that staff - along with
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the long-standing value system consistently observed by Chimes - represent the bricks and mortar that will be there for him. Chimes is certainly not the only provider of quality services. But my strong recommendation to families and guardians of individuals moving from the Training Centers is to actively engage with providers you are considering. Get to know the leadership, ask about their long-range plans, their staff turn-over, and their philosophy. Speak with families of individuals already being served by the provider. Where specialized medical care is required, ensure they have the means and training to meet your loved ones needs. For Linda and me, the most difficult stage in Tims move to a group home was not knowing what to expect. Once we saw first-hand group residences that were serving individuals with needs similar to our sons, we felt much more confident. Based on 18 years of our experience so far, that confidence was not misplaced.

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Peters Smile Shared by Peters sister I'd like to share a story about my older brother, Peter. He was born in 1948 and he suffered brain damage from forceps used at delivery, leaving him functioning at a 3 year old level. He is non verbal, so he uses leading gestures to communicate. Back then, there were no services available for Peter. My parents had no help and our family went into crisis after Peter became aggressive at home. My parents placed him in Lynchburg Training Center in 1965. After my fathers passing, I encouraged my mother to transfer Peter to Northern Virginia Training Center so he could be close to home. In 1981 he was accepted, and regular home visits started. I volunteered at the center doing whatever I could, from Co-President of Parents and Associates, to Ambience Coordinator, to Human Rights Representative, to even mending of clients clothing. In 2010, after living in state training centers for 45 years, we were offered a placement in a Chimes group home. My siblings and I were scared. I spent many sleepless nights trying to figure out what to do. My siblings asked why I would even consider this. In the long run, I decided to give Peter a voice. So, Peter moved into a Chimes home. Now, for the first time, when I put Peter to bed at his home, he rolls over and gives me a smile; I'm sure he is saying thank you for my new life.

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RJ Moves Back to the Community Shared by RJs sister My brother, RJ, has had success in transitioning to a congregate care facility from NVTC. Our mother, Amelia, was quite involved in his life and knew a lot of the people and processes in Northern Virginia. I came to know the same when RJ had a broken jaw in August 2008, followed by acute renal failure in January 2009. Mother had been RJ's guardian, with me as standby, until he moved to NVTC. We then became co-guardians, and I ended up as RJ's guardian as mother's decision making skills had declined as was evidenced by the broken jaw and acute renal failure. She would voice her opinion to me, but not take action. In the midst of the broken jaw and renal failure, I drove up from Atlanta on the phone with Adult Protective Services and Deb Lochart from Human Rights. I engaged a moving company and requested that a representative of the group home where RJ had been living be available. When I got to the hospital that evening, I had the NG tube and restraints removed and prepared my mother to move RJ to hospice. He was either going to feed himself or perish. Fortunately, NVTC could take RJ as neither our mother nor I was in a position to take him. RJ stayed at NVTC, progressively improving, until he moved to the Chimes Pebble Lane home in June of 2011. I had toured various group homes that January when Deborah Bumbaugh and Mark Diorio of NVTC explained that this would be best for RJ. Of all the group homes I toured with Jennifer McKinney from the Arlington CSB, Chimes was our best option. They understood the incidents and accidents that occurred at the previous group home and were prepared to provide RJ with the supports he would need. It was a small home, starting out with just four people. This size home allowed RJ to access the Money Follows the Person funding for extra supports, including furniture, as he moved. It also meant that RJ would not be near our mother in Arlington. She had been taking taxis to NVTC, but her health was declining. Neither our mother nor I were present when RJ moved. It was probably best for RJ that mother was not present since it allowed him the chance for a fresh start. On February 28, 2011 one of mother's neighbors called to say that she was on the floor of her home and had been there for at least two days, possibly close to three. I drove up that weekend and made arrangements for rehab, assisted living, and a nursing home for her. In July, I took her to see RJ at the Chimes Pebble Lane house for what would be their last visit. Our mother died of congestive heart failure that November. I told RJ of this the Sunday after it occurred. He hugged me four times during our visit and I understand was in need of extra staff attention for some time afterward. It was one of the few times in his life he did not ask to go to McDonald's for Diet Coke during that visit. I am happy to say that RJ has blossomed since mother's death. She would worry him about his fingernails and insist on cutting them on every visit. This activity upset RJ. She would then become upset because he would push her away.
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RJ is still doing beautifully in his new home. He likes that it is really his home and he has some independence there. RJ is happiest in front of the TV with his TV guide. He did have a hiccupping and constipation incident late last year because he was sucking air from the straw of his drink cup after he'd finished his drink, but the home has figured out how to handle the issue. RJ's wants are to go to RJ, enjoying a Diet Coke at McDonalds, with his sister McDonald's for a Diet Coke and bowling. It's how he greets me when I first visit him. "McDonald's. Diet Coke." I took him bowling over the holidays. He lit up when I suggested it. I take him to the Bonefish Grill when I visit him. We sit in the bar so that he can watch TV. He also likes to go to the movies, but make sure you show him where the bathroom is as he will suck down his drink in short order! My concern about RJ is a community job placement. He is still in the Skills Training Center at NVTC in their envelope stuffing/meeting notebook preparation facility. RJ is their top performer. I want him to have a job in his community, near his home. RJ has a care manager, Jill Thurber, since I do not live in Northern Virginia. Jill has been helping us find a community job placement for RJ. He is on the waiting list at ECHO. Jill and I toured the day programs in the area following the May 2011 fair at NVTC. Jill visits with RJ frequently and takes care of needs that I cannot, such as shopping for clothing. I visit RJ once a quarter. I am waiting to hear about the appointment of our cousin as RJ's standby guardian just in case something happens to me. Having a good relationship and open communication with the care manager, the proposed standby guardian, and the group home has made it possible for me to be very involved in RJs life and care, even from a great distance. There is no substitute for being there in person to tour and select the right home, but so much else can be done from anywhere with the right team. RJs success is proof of that.

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What is the DOJ Settlement? In 2008, the Department of Justice began an investigation into the failure of Virginia to provide adequate avenues for people with disabilities in training centers to find and receive supports in the community. The DOJ expanded the scope of their Olmstead vs. LC investigation through 2010. On February 10, 2011 the In 1999, the Supreme Department of Justice filed a findings letter that Court ruled that states detailed the violations of the Americans with must place people with Disabilities Act and the Supreme Courts Olmstead v. intellectual and L.C. decision.9 At that time, Virginia and the developmental disabilities Department of Justice entered into a closed door negotiation on how to settle the complaint without in the most integrated and having the matter settled in court. On January 26, least restrictive setting that 2012, the state of Virginia and the DOJ released their can meet their needs. settlement proposal, herein known as the DOJ Settlement. The judge overseeing the settlement signed it provisionally on March 6, 2012 and signed it permanently, with modifications, on August 23, 2012, thereby making all of the settlements provisions court enforceable. You can review updates related to the settlement as well as other settlement documents at www.dbhds.virginia.gov/settlement.htm What Does the DOJ Settlement Mean? The DOJ settlement includes provisions for people currently living in training centers, nursing homes, and people already living in the community who may or may not be utilizing a Waiver to fund supports. It is a ten year agreement that focuses on ensuring Virginia is no longer in violation of disability rights law. As a person involved in the transition planning process for someone leaving a training center, the following parts of the agreement may be most relevant to you. 1. The settlement provides 800 Intellectual Disability Waivers that allow people currently in the training centers to move to community-based care. A waiver is a different way of funding services than the training center uses. (See Page 33 for more information on ID Waivers) 2. A crisis support system (called START) is included in the settlement. Any adult individual with an intellectual or developmental disability in the community who is having a mental health or behavioral crisis can utilize these services 24 hours a day, seven days a week. A mobile crisis team will be expected to reach an individual in an urban area within 1 hour and to reach individuals in rural areas within 2 hours. These crisis teams are already being built. (See APPENDIX B for a list of these teams. Note that Northern Virginia is Region 2.) With each crisis event, the response team can stay on site with the person in crisis for up to 72 hours. If more supports are needed beyond
9

U.S. DOJ letter February 10, 2011. Available at www.dbhds.virginia.gov/settlement.htm

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that time, individuals can then go to respite beds in their region of the state for stabilization. 3. There is a focus on moving anyone, regardless of level of need, to community-based living in small settings. However, no one can be moved until appropriate supports are in place to ensure their safety and success. (See below for more details) 4. Individuals leaving training centers will receive increased case management and monitoring. Their support coordinator will visit more often and be dedicated to ensuring that appropriate supports are in place. Individuals transitioning will also have increased visits from licensing officials, their training center staff, and other team members. (See APPENDIX C for the schedule of these visits.) 5. The settlement agreement moves Virginia towards a model of integrated employment, meaning that anyone should be able to receive employment supports in an integrated setting (meaning working with people with and without disabilities) if they choose. 6. The settlement requires extensive oversight of quality and safety including monitoring, risk management, data collection and review, and sustained follow up for people transitioning. 7. To read the full settlement, please visit www.dbhds.virginia.gov/settlement.htm

Appropriate Supports The Department of Justice settlement and the Governors plan to close four of the five training centers are focused on supporting all people in the community, in integrated settings. The DOJ has made clear the dedication to safety for the people involved in the transition process. When the settlement says that no one moves out until the appropriate supports are in place, that means that no one may be discharged from the training center until the services they need (e.g. total care for bathing and meals, podiatry care, medication monitoring, etc.) are reviewed with the providers who will support the individual and the providers are ready, willing, and able to provide that care. If you feel that a needed service is not in the plan, you must bring it up with your support team. Do bear in mind that you and the personal support team (PST) may choose to change some of the supports the individual with a disability currently receives. The transition process is a time to fully evaluate someone to see what is working, what isnt, and what needs to be in place in the new home and job site. You may decide as a team that one service is no longer helpful but that another is needed. For example, you may determine that after years of a certain therapy, the individual is no longer making progress, so it would make sense to try discontinuing that therapy in favor of other support plans. An individual who has been working but is elderly may decide they want to retire and look into a different job, a parttime job, or volunteer opportunities.

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If youre working on plans with your team and still feel uneasy or feel like your concerns are not being addressed, consider contacting state-level staff working on the transition process (see APPENDIX A for these contact names, numbers, websites, and email addresses). Let them know about your concerns and the hurdles you are facing. They are meant to be a resource for making transition successful. If you have identified barriers to community placement, the settlement agreement establishes a Regional Support Team (RST) to help resolve these barriers. You and the RST might find a mutually satisfactory resolution of the barrier.

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HOW TO PREPARE FOR TRANSITION Who Will Help with Transition? An entire team of professionals (underlined below) will be working with you to plan for transition, and to follow through and ensure the transition is safe and successful. As a team, youll work to ensure that all of the supports someone needs are in place before the move and the service providers youve chosen are well equipped to deliver those supports. You will already know many of the people on this team. It will include the person with a disability, staff members who have worked with your loved one at the training center, the social worker and discharge planner at the training center (called the Community Integration Manager), specialists who help support your loved one (e.g. therapists and doctors), and friends and/or family. Training Center staff are state employees through the Department of Behavioral Health and Developmental Services. You should ask that any staff members who worked with your loved one on a routine basis and know them well also be included in Your Team Will Include: the team so they can provide input and advice. There will also be team members who you may not have worked closely with in the past. This includes your Community Services Board Support Coordinator (Case Manager), a county employee. In Northern Virginia, your county will dictate which Community Services Board (CSB) you use. For example, if you live in Fairfax County, youll use the Fairfax-Falls Church CSB. The CSB involved is based upon where the individual with a disability was living when he or she moved into the training center. You may have already met with this Support Coordinator, but if not, as soon as you start planning for transition the Support Coordinator will be a part of the process. The Support Coordinator will help you understand waiver and other community-based living options. The Support Coordinator will also work with the team to line up supports to ensure that the person has everything needed when moving to their new home. If the person with a disability and the support team decide they want to move to a new part of the state, you will begin working with a Support Coordinator at your destination CSB or its equivalent, too.

The person with a disability Parents/guardians Other interested family members Training Center staff Your CSB Support Coordinator Providers you select in the community Other people you think may be helpful

Other team members will include residential providers, job support providers, and any other service providers the person moving to the community will use after transitioning. Your team and Support Coordinator will help you identify, tour, and select these service providers (For a list of Northern Virginia providers and tips on how to find the appropriate provider for your loved one, see pages 45-50). Your team will receive additional support from the state Department of Behavioral Health and Developmental Services staff including Community Resource Consultants. These Community Resource Consultants (CRCs)

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provide training and technical assistance to CSBs, private providers, family members and individuals to ensure the best possible decisions are made regarding individuals supports in the community. Your entire team will ensure that the planned move fully supports the person, keeps them safe, and meets the strict oversight requirements of the settlement. Keep in mind that each team member has a different area of expertise, so youll want to take all opinions into account when youre planning for a transition. If you live out of the area or out of the state, you are still an important part of the planning team. Participate in conference calls and emails as much as possible. Ask to be updated after all meetings you are not able to attend. When it comes to selecting a home or a job, it is a very important time for you to be present, if at all possible. Walking into a home or job placement will immediately start to give you a feeling about whether or not this option would be a good fit. Youll want to be able to imagine the home and/or job once your loved one is there regularly and a visit is an important part of that plan. If you plan to have the individual leaving NVTC come to live near you, make sure you and the team plan for that move. Services and supports vary from state to state, so youll need to ensure the new state of residence has the services available that the person with a disability will need. Engage the waiver and service administrators in the destination state in the planning process. Support Coordinators, Training Center staff, and service providers should all be willing and able to give you clear information on what they know, what services are available, and what they think may be a good fit for your loved one. However, they cannot make decisions for you. If you are not able to participate in the transition planning process fully or at all, you may want to get someone involved on your behalf. Consider hiring a private case manager or advocate, like Elder Care Consultants, privately hired case managers listed in APPENDIX A. They can be involved in touring, surprise visits, and advocating for the needs of your loved one. They can help share information with the team about your loved ones needs. You may also want to explore the idea of a Microboard, a circle of support around your loved one (see MICROBOARDS section). Regional Support Teams If youre experiencing barriers with discharge or youve selected a placement that is not a Waiver funded home for four or fewer people, your loved ones transition plan will go before the Regional Support Team. The team will be comprised of disability experts in your region of the state who will work to determine what the barriers are to discharge and try to resolve them or to ensure that you have been advised of all support options and are sure the new placement you have selected is the most integrated placement possible. The specific team members may change over time but will always include: the Community Integration Manager, the Community Resource Consultant, a Licensing Specialist from the state, a state Human Rights Advocate, a Training Center Social Services representative, someone from the START crisis team, a medical representative from the Training Center

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Thinking about Needs and Wants You may already have a lot of information about a persons physical and behavioral support needs. Make sure this information is included in transition planning, but dont forget about wants. When planning for community providers, think about the special things that may matter. What would make the new house feel like home? Living with a friend from NVTC? A yard? A roommate from the training center? Having a pet? Being near a store or ice cream shop? Having certain experiences (e.g. visiting a landmark)? A caregiver that likes the same things they do?

and the community, an ID Services Director and Supervisor from a regional CSB, and a DD Waiver Case Manager. Your case will go before the Regional Support Team based upon a referral from either the Community Integration Manager at the Training Center or the Community Resource Consultant from DBHDS. You may ask for a referral. Reasons for referral include difficulty finding a placement after looking for three months, a recommendation to move to a home with five or more residents, a recommendation to move to another ICF or a nursing home, opposition to discharge by the authorized representative or refusal to participate in discharge planning, and lack of agreement on a discharge plan from the team members. The Regional Support Team will review the situation and make recommendations. They will work with the team to make sure that all available options have been explored and evaluated. Their job is to verify that discharge plans are safe, comprehensive, and involve a movement to the most integrated setting. If you have met with the Regional Support Team and still feel that the home you have selected is the most appropriate choice, you may continue with your planned placement.

How Do We Make Plans? The team will focus on the person who will be transitioning. What are his or her needs for health and safety, wishes, hopes, and preferences? Think as much as you can about specific things the person requires to be well supported and the specific things the person likes. Once the team has a good idea of the answers to those questions, youll be able to focus the transition process on meeting those needs and wants. It is most important to remember that everyone on the team should be focused on the person at all times, not making plans based upon their own wishes or convenience. Work with your team, especially your Support Coordinator, to understand the options available where your loved one will be living and working. You will have the opportunity to tour all of the providers who will be able to serve your loved one and then you can choose which provider you think will be the best match. If the team feels at any time that

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the provider is not going to work out, you can change providers while planning. If the team makes this decision after someone has already moved out of the training center, you still have the option to explore and select new providers. You will be able to review online profiles of providers with your support coordinator and youll sign off on these profiles as you select options. It is also a good idea to talk with families who have transitioned out of the training center and families who work with the providers youve selected. These families have volunteered to share their expertise and experience. For some ideas, see APPENDIX A at the end of this guide. Use their experiences to find out what worked best for their loved ones and how services may best support your family members needs. Keep in mind that the settlement agreement takes place over 10 years because the state and Department of Justice recognize that there are not enough services in the community for everyone to leave training centers today. However, capacity is already being developed and will continue to build over the settlement and beyond. If the specific provider or service you want is not available today, your team will work to make sure it is available when your loved one is ready to transition. No one is required to transition until all needed services and supports are in place. This process may feel new, perhaps even overwhelming and frightening since so much is changing for your loved one. Never stop talking to your team and asking questions. It is time to stop and re-examine your plans for a move if: youre considering service providers who are not yet able to provide all the services your loved one will need, if not all health and safety concerns are being addressed, or if any questions you have about meaningful quality of life (e.g. the ability to take vacations) are not being addressed. If you feel you may be in one of these situations, take your concern back to your personal support team to reevaluate your options and plans. Transition Timeline The following sample timeline was developed by the Department of Behavioral Health and Developmental Services to help explain the sequence of events leading up to transition. It is an overview of a multi-faceted process that will be adjusted for each individual.

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Week 1

Week 2 Weeks 3-5

Week 6

Week 7 Week 8 Week 9 Week 10 Week 11 Week 12

The personal support team (PST), also known as the interdisciplinary team, will hold a pre-move planning meeting to identify the services and supports needed for successful living outside of NVTC consistent with the choice of the individual and his/her authorized representative (AR). Based on this meeting, a discharge plan is developed/revised that identifies all of the essential/health and safety support needs of the individual, the equipment the individual will require, the training the provider will receive regarding the individuals specific support needs, and outlines a specific plan for transition. Based on Personal Support Team discussion, and feedback from individuals/ARs and CSBs who have explored potential providers, providers are identified for the individual and AR to visit. The individual and AR will tour potential provider homes and employment or day supports. Potential providers will go to the training center to observe individual and the staff at the training center. The individual and AR will identify a potential home based on options explored and input from the PST. A provider pre-move planning meeting will be held with the PST and the provider to share information and confirm additional visits. Individual will complete a day visit to the home and supported employment/day support provider with assistance from training center staff. Individual, with assistance from training center staff, will visit the home during the evening. The Training Center will provide individualized training to the potential provider during this time period. The individual will visit the home for a weekend and overnight experience. Individual and AR will confirm choice of new home and supported employment/day activity, and the PST will participate in a final pre-move planning meeting. Individual prepares to move. Individual moves to his/her new home.

Person Centered Plans Together, the support team will develop a Person Centered Plan (PCP) that includes information about the person with a disability, their health and safety needs, strengths, talents, and wishes. This plan also outlines specific outcomes youd like to see in place as the person transitions and in the future. The plan can be updated at any time and it must be updated at least annually. You can use the PCP as a tool to help you describe everything that is important to and for the person and to envision how the persons needs and wishes will be accommodated. Supports Intensity Scale (SIS) If you havent already, you will complete a SIS before your loved one moves to the community. The SIS is a survey profiling the supports a person needs to be safe and successful in daily tasks and other life areas. The SIS will be done at least every three years and updated more often if the persons needs change. The support needs identified in the

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SIS will be integrated into the Person Centered Plan. The needs identified must then be fully addressed in the plan. Make sure any support needs are noted in the SIS and understood by the support team.

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Guardianship, Conservatorship, and Authorized Representatives Guardianship or conservatorship is a legal, court-ordered relationship in which one individual is appointed by the court to become the substitute decision maker for another. If you are the legal guardian/conservator for someone, you have gone to court and had a judge sign a guardianship/conservatorship order. If you are someones guardian or conservator, locate the appointment order TIP: and you can identify these items: The name of the city or county where the order was created The name of the person with a disability and a statement clarifying that they are incapacitated and unable to make decisions independently The name of the guardian who is appointed The legal rights given to the guardian Signature of a judge and date for the order What does it mean to be a guardian/conservator? If you are a guardian and/or conservator, you are the legally appointed authority to make all decisions on behalf of another person. This is the most restrictive form of limiting legal rights, restricting all legal decisions that arise in the life of the incapacitated person.

Guardian of the person: If the decision maker is appointed by the court to become a guardian of the person, that person is responsible for the personal affairs of that person, including decisions regarding the persons support, care, health, safety, habilitation, education, therapeutic treatment, and residential care, unless the court order specifies otherwise. This person has the authority to review medical records

All people are assumed to have legal authority once they turn 18, so you must get a court order to become guardian if someones disability has significantly impaired their ability to make safe decisions. As a parent of a child over 18, you do not have legal authority unless youve put it into place.

Conservator: If the decision maker is appointed by the court to become a conservator for a person who has been deemed incapable of making financial decisions for themselves, that decision maker is responsible for managing the persons estate and/or financial affairs as specified in the court order. Do I need to be guardian and conservator? The short answer is no. Because someone needs a guardian, they may not necessarily need a conservator and vice versa. You would need to be the legal guardian if someone needed help making decisions about care, health, safety, and other supports. You would need to be conservator if someone needs assistance with all financial decisions and you arent managing their finances in another way. For example, if someones sole income
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comes from Social Security and you are the Representative Payee (meaning you are appointed by Social Security as the person who is allowed to access and disperse that money), you may not want to seek conservatorship since you already have legal control over all assets. However, if there are significant assets outside of Social Security income, conservatorship may be worth pursuing to ensure those assets are protected and well managed. In this situation, you would also want to explore a Special Needs Trust (see page 42) to ensure that the persons benefits arent adversely affected by the assets in their name. Always talk to a lawyer about your particular situation to get expert advice if you have concerns. What are the limited options that are less restrictive? Its important to note that without a court order specifying limited areas of need in a guardianship and/or conservatorship order, all legal rights are taken away from the individual. However, you can have a guardianship or conservatorship order that is limited in scope, thereby preserving some named rights. You can also look into alternatives to guardianship that give you control over just medical or other types of decisions. You can explore alternatives to conservatorship like becoming Financial Power of Attorney. For a full list of alternatives, see APPENDIX D. How to Get Started First, examine the benefits and limits of guardianship, conservatorship, and the less restrictive alternatives. Make a decision on the best option for your loved one. Then, contact an attorney with expertise in the field of elder or disability law. See APPENDIX A at the end of this guide for a list of attorneys in the Northern Virginia area who may be able to help. Tips on Guardianship and Conservatorship You may want to consider appointing a standby guardian/conservator in your order. This person would not have legal authority until the primary guardian(s) passed away or were no longer able to serve as declared by a court. At that time, the standby representative would step in and have full legal authority for 30 days in the event of a triggering crisis (e.g. mental incapacitation of the current guardian or death of the guardian), thereby allowing them time to petition the court and make themselves the permanent guardian/conservator.10 Some families appoint co-guardians and/or co-conservators. Often the co-representative is a sibling or same aged peer as the person with a disability. This way, when the parent passes away, someone else is immediately able to serve in full legal capacity without

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16.1-351

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returning to court.

It is easier to add in more legal authority later than it is to take away authority. For example, it is much easier to start off as medical power of attorney and later become guardian than it is to start off as full guardian and later try to become just medical power of attorney. This is because when a guardian or conservator is appointed to serve, the person with a disability is deemed incapacitated. If you later want to return some legal authority to the person with a disability, you would have to show that they had regained capacity. Because all of these protections are legal actions, they require the time of a lawyer which can be expensive. You will pay by the hour for any assistance, and orders that do not require time in front of a judge (e.g. Power of Attorney) typically are much less expensive as you will require less of a lawyers time. When you are ready to become the legal decision making authority, call several lawyers to get cost estimates. Ask about payment plans or other ways to make the process fit with your budget. If your family is at 200% of the poverty level or lower, Legal Services of Northern Virginia (703-778-6800 or www.lsnv.org) may be able to take your case for free. After being appointed as guardian, you will need to get a bond. This bond is a way of guaranteeing to the court that you will be an honorable guardian and will fulfill your duties

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with the best interests of the individual with a disability in mind. The bond amount is normally calculated based upon the assets and income of the person with a disability. You will be asked to work with a bond company and put up a portion of that amount as a guarantee. Your credit may be checked during this process. If you do not think you will be able to afford a bond, talk with the lawyer who is getting you appointed as guardian to see if the fee can be waived. You are not fully appointed as guardian until youre also bonded. Is a Court Appointed Guardian (CAG) the same as an Authorized Representative (AR)? The short answer is no. Authorized Representatives are individuals appointed by the director of a training center to review a residents condition and act on their behalf in making treatment decisions. The code of Virginia and the settlement agreement reiterate the precedence order of who can be an authorized representative. Guardians have a much broader authority to act. For a brief outline of the differences, please see below and for full details see APPENDIX E. If youre currently not a guardian and think that you want to become guardian, it is a good time to talk to a qualified attorney about starting that process (For a list of attorneys in Northern Virginia, see APPENDIX A). Once your loved one leaves the training center and moves to a community placement, you will need some form of legal authority (e.g. guardianship) to continue to be the legal decision maker.
Issue/Situation HIPAA Consent DBHDS Environment (Health Insurance Portability & Accountability Act of 1966) HIPAA Consent Community Environment (non-DBHDS) Once in Community, the Client can refuse services or walk away to the clients detriment. Once in Community, the Client can choose to let someone exploit them (APS can be called but, depending on the circumstances, the person can still refuse services) Once in Community, the Client can choose to move from their residential placement to another State Contractual Obligations: ability to sign on behalf of Client in nonDBHDS settings Emergency Room Treatment Authorization Needed in nonDBHDS facility Legal Duty to serve in Clients best interest (and unable to walk away unless the Court approves)
*Virginia Public Guardian & Conservator Program Guidance Document (March 2012)

AR/LAR Has Authority to Act

CAG Has Authority to Act

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Is Guardianship the same as a Will? No, it is not. If you have made plans or stipulations in your will for how you want a person to be supported after your passing, this does not have the same legal authority as guardianship. You may want to consider a co-guardian or standby guardian to act after your death. Also, see the section on Medicaid and the Special Needs Trust for further details on how leaving money or other assets in a will to a person with a disability may affect their support benefits. Guardianship Across State Lines

Guardianship laws vary from state to state. There is a movement to make all guardianship orders universally written and acknowledged, but that has not happened yet. This means that a guardianship order is only valid in the state in which it was written. For example, if you become the appointed guardian for someone who lives in Virginia, but that person later moves to Maryland, your order may not be recognized in Maryland unless you go back to court there to amend your order of appointment. You will need to be appointed guardian in the state where the person with a disability resides. They can move anywhere within that state and your order and authority are still valid. If you move out of state, but your loved one stays in the state where guardianship was established, your order is still valid. However, you may want to consider another guardian or co-guardian who is nearby so they can be close in the event of an emergency or to visit the person regularly. If this is not possible, ensure that you have a way to get signatures provided quickly to the person with a disability in case consent is needed. You could do this via fax, for example.

TIP: Make sure your will, a Special Needs Trust, and other legal documents are updated as needed. The people you name in those documents should still be willing and able to serve in the roles you named for them and they should be aware that they will be asked to do so.

TIP: If you cant serve as guardian and dont know anyone who can, ask your team about a privately funded guardian, a volunteer guardian, or a public guardian. Any professional associated with the individual who requires a guardian/conservator (e.g. case worker, social worker, attorney, therapist, etc.) can make a referral to the public guardianship program in Virginia by contacting Cynthia Smith at DHBDS at (804) 786-0946 or Cynthia.smith@dbhds.virginia.gov in order to place that individual on the state waiting list.
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WAIVERS What is an Intellectual Disability (ID) Waiver? Decades ago, nearly the only way for a person with a disability to access state supports was to move to a state training center. In Virginia, the population of state training centers peaked at around 6,000 individuals, but has been steadily decreasing since then as individuals have transitioned to community supports, fewer families chose the training centers to provide supports, and the state has strongly discouraged admissions to training centers. As of 2012, the population of training center residents had dropped more than 42% since the year 2000.11 One of the reasons people have been able to look outside of training centers for the supports they need is the creation of the state waiver system in 1990. For someone to qualify for a waiver, they have to show adequate need on a Level of Functioning Survey, a test that scores someones ability to complete certain tasks with and without assistance. Qualifying for a waiver based upon this survey requires that someone meet the level of need for an Intermediate Care Facility (ICF), the same criteria required for training center admission. However, that person can choose to receive those supports in the community instead by using a waiver to fund services. Medicaid funds all waivers in Virginia, so anyone with a waiver also must have Medicaid. (For more on waivers, see http://dmasva.dmas.virginia.gov/Content_pgs/ltc-wvr.aspx) People leaving the training center will be able to utilize an Intellectual Disability or ID Waiver (formerly called the Mental Retardation/MR Waiver). This waiver funds a variety of services tailored to the needs of the individual. The list of services and definitions for these services are taken from the Department of Behavioral Health and Developmental Services.12 Someone using a waiver can imagine these services like a menu. They will work with their support team to determine which services they need now, but most people probably wont need every single service the waiver offers. However, if someones situation or preferences change, they can adjust their waiver supports at any time to access new waiver services, increase or decrease service hours, or cease using services they no longer want or need. In early 2013, Virginias Department of Behavioral Health and Developmental Services put out a request for proposals for a firm to re-design the current ID Waiver, as well as the DD (Individual and Family Developmental Disabilities Support) Waiver.13 That firm will be hired in the summer of 2013 and will begin with a rate study to gather data on the true cost
William Hazels presentation to Senate Finance Committee on January 31, 2012. Available at http://sfc.virginia.gov/pdf/committee_meeting_presentations/2012/013112_Hazel_DOJ_Presentation.pdf 12 Medicaid Waiver Just the Facts, Pages 5-8. Available at http://www.dbhds.virginia.gov/documents/ODS/OMR-MR-WaiverGenInfo.pdf 13 To view the proposal, visit http://www.dbhds.virginia.gov/documents/AdminBusiness/720C-0435713R%20RFP.pdf
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of providing waiver services. The firm will also examine how to provide more flexibility in utilizing the waiver, as well as how more services can be added to address the support needs of individuals with complex medical and behavioral needs. These new plans should be available to the Centers for Medicare and Medicaid Services and the public by April 1, 2014 and should be implemented beginning July 1, 2014. Thus, it is important to keep in mind that this section talks about the ID Waiver as it exists now, but there should be positive changes to the waiver in the near future. Keep in mind that while all states have some version of the waiver system, each state administers waivers differently. Some states have different names for the waiver, different eligibility criteria, and a different menu of services. If youre planning for your loved one to move out of Virginia to receive services when leaving the training center, work with your planning team to contact community-based services authorities in the destination state to learn how services and supports would be offered. ID Waiver Services Assistive technology: Specialized medical equipment, supplies, devices, controls, and appliances not available under the State Plan for Medical Assistance, which enable individuals to increase their abilities to perform activities of daily living (ADLs), or to perceive, control, or communicate within the environment in which they live. This also includes items necessary for life support, ancillary services, and equipment necessary for the proper functioning of such items. Companion Care: Agency or Consumer-Directed non-medical care, socialization or support to adults (age 18 and older) in an individuals home or at various locations in the community. Consumerdirected services offer the individual or family the option of hiring workers directly, rather than using traditional agency staff. Crisis stabilization: Direct intervention (and may include one-to-one supervision) to a person with an intellectual disability who is experiencing serious psychiatric or behavioral problems which jeopardize his/her current community living situation. The goal is to avoid emergency psychiatric hospitalization or institutional admission or other out-of-home placement, as well as to stabilize the individual and strengthen the current living situation so the individual can be maintained during and beyond the crisis period. Day support: Skill building or supports for the acquisition, retention, or improvement of self-help, socialization, community integration and adaptive skills. Day support provides opportunities for peer interactions, community integration and enhancement of social networks. Supports may be provided to ensure an individuals health and safety.

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Environmental modifications: Physical adaptations to an individuals home or community residence, vehicle, and, in some instances, a workplace, when the modification exceeds the reasonable accommodation requirements of the Americans with Disabilities Act (ADA), which provide direct medical or remedial benefit to the individual. Environmental modifications are typically permanently installed fixtures or modifications that change a sites structure. Personal Assistance: Agency or Consumer-Directed hands-on support with personal assistance, activities of daily living (ADLs), instrumental activities of daily living, community access, assistance with medication and other medical needs, and, with the exception of companion services, monitoring health status and physical condition. These services may be provided in home and community settings to enable an individual to maintain the health status and functional skills necessary to live in the community or participate in community activities. Consumer-directed services offer the individual or family the option of hiring workers directly, rather than using traditional agency staff. Personal Emergency Response Systems (PERS): An electronic device that enables individuals to secure help in an emergency. PERS electronically monitors individual safety in the home and provides access to emergency crisis intervention for medical or environmental emergencies through the provision of a two-way voice communication system that dials a 24-hour response or monitoring center upon activation and via the individuals home telephone line. When appropriate, PERS may also include medication-monitoring devices. Prevocational services: Services aimed at preparing an individual for paid employment or volunteer work, but which are not job task-oriented. They are aimed at a more generalized result. Prevocational services are provided to individuals who are not expected to join the regular work force without supports or participate in a transitional sheltered workshop program within a year (excluding supported employment programs). Residential Support Services: Supports provided in an individuals home, community, or in a licensed or approved residence. These supports should enable the individual to improve or maintain his or her health and medical status, live at home and use the community, improve abilities and acquire new home living or community skills, and demonstrate safe and appropriate behavior in his or her community. In-home supports are typically provided in a private residence and are supplemental to the primary care provided by the individual, caregiver(s) or the parent(s). In-home supports may not supplant this primary care. In-home supports are delivered on an individualized basis, typically for less than a continuous 24 hours,

TIP: Does your loved one have a connection with a particular staff member at NVTC? Consider talking to that staff person about becoming a Sponsored Residential Provider so they are paid to support your loved one in their home.

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Tips for a Successful Move: Plan a walkthrough shortly before the move to identify any last minute issues Develop a plan for how each team member will help Develop a plan with the provider for ongoing communication Have a plan for addressing major concerns and know how the provider responds to these concerns

according to the Plan for Supports and are delivered primarily with a 1:1 staff-to-individual ratio. Congregate residential supports are typically provided to an individual living: 1) in a group home, 2) in the home of the ID Waiver services provider (such as sponsored residential where up to two individuals live in the home of a professional service provider and become an integrated part of the family), or 3) in an apartment or other home setting, with others receiving ID Waiver residential support simultaneously. Respite: Agency or Consumer-Directed services designed to provide temporary, substitute care for that which is normally provided by the family or other unpaid, primary caregiver of an individual. These short-term services may be provided because of the primary caregivers absence in an emergency or on-going need for relief. Consumer-directed services offer the individual or family the option of hiring workers directly, rather than using traditional agency staff.

Services Facilitation (SF): A service that assists the individual and family members in arranging for, directing, and managing services provided through the consumer-directed (CD) model. Individuals choosing the CD model of service delivery may receive supports from a services facilitator who meets the required knowledge, skills and abilities necessary for this service, is self-employed or hired by an agency. Services Facilitators provide required training and support to individuals and family members to hire, train and dismiss employees who provide supports to the individual in his/her own home or community. Skilled Nursing Services: Nursing services ordered by a physician for individuals with serious medical conditions and complex health care needs. This service is available only for individuals for whom these services cannot be accessed through another means. These services may be provided in an individuals home, community setting or both. Supported Employment: Job skills training in settings in which persons without disabilities are typically employed. This service is for individuals with developmental disabilities for whom competitive employment at or above the minimum wage is unlikely without on-going supports and who, because of their disability, need ongoing employment support to perform in a work setting. Supported employment is defined as intermittent support, usually provided oneon-one by a job coach to an individual in a supported employment position who, during most of the time on the job site, performs independently. Group supported employment

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is defined as continuous support provided by staff to eight or fewer individuals with disabilities in an enclave, work crew, entrepreneurial model or benchwork model. Therapeutic Consultation: Expertise, training, and technical assistance in the individuals home or community in any of the following specialty areas to assist family members, caregivers, and other service providers in supporting the individual to facilitate implementation of the individuals desired outcomes as identified in the Individual Support Plan. The specialty areas are: Psychology, Behavior, Speech and Language Pathology, Occupational Therapy, Physical Therapy, Therapeutic Recreation and Rehabilitation Engineering. This is only a consultation and not ongoing therapy. Transition Services: Purchase of services and essential goods for anyone who is being discharged from an ICF/nursing home/long-stay hospital, receiving a Money Follows the Person slot or currently receiving ID Waiver services and moving into a private residence (includes a family members home, ones own apartment or home, adult foster care, or sponsored residential). Examples of allowable services/goods: security deposits, household furnishings, utility deposits, pest extermination, move-in cleaning service, moving expenses, proof of identity documents, and delivery of appliances. What if your loved one needs a service you dont see listed on this menu? That does not mean that the service would be unavailable to them. There may be another funding stream (e.g. CSB funds or local programs, free community services, etc.) that provides for that service. Make sure youre working with your team to ensure that service will be a part of your loved ones support plan, no matter the source. If youre having trouble locating a provider of a specific service, talk to other families who are served by the same providers, your Support Coordinator, and the staff who support your loved one to see if they have ideas. Check out www.disabilitynavigator.org, the Arc Resource Connection at www.thearcofnova.org to search for providers. Dont forget that some individuals leaving NVTC will have primary insurance that is able to cover the cost of some services and providers not covered by Medicaid. Some doctors look out for unusual cases and like to serve people who have unique needs. Also note that the DOJ Settlement mandates that the Regional Community Support Center, now housed at NVTC to provide dental and other services, be moved off campus and made available to anyone receiving community services.

TIP: If this process seems scary or overwhelming, consider talking to someone who has been there. Volunteers in the Family Mentoring Program have been through the process and are willing and able to help you during this time of change. See Family Mentoring Program in contacts to get started.
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Money Follows the Person (MFP)14 Money Follows the Person (MFP) is a program initiated several years ago to assist individuals interested in leaving facilities, including training centers and nursing homes, and transitioning to the community. MFP allows someone leaving a training center to move to the community through a special channel for getting a waiver. Stipulations of MFP In order to qualify for MFP, someone must have lived in a qualifying facility (e.g. NVTC) for more than 90 days and be Medicaid eligible for at least one month prior to discharge. Almost anyone leaving the training center will likely qualify for the first two provisions. Lastly, the person must move to one of the following: A home that an individual or his or her family member owns or leases An apartment with an individual lease, with lockable entrance and exit, that includes living, sleeping, bathing and TIP: cooking areas Keep MFP in mind on A residence, in a community-based tours and in your planning residential setting, in which no more than process. Since only four (4) unrelated individuals reside

Someone who leaves the training center with an MFP ID waiver must stay in a qualifying residence (though they may move from one qualifying residence to another) for at least one year in order for their ID waiver to become permanent.

Advantages of MFP There are a few advantages to using the MFP Program when transitioning. First, MFP can provide supplemental, non-Medicaid funds, of up to $5,000 for home modifications that would allow someone to safely transition. This may be important if someone needs a modification that will cost more than the $5,000 limit on the ID Waiver. For example, if someone needed all the doors in a home widened and ramps put in for a wheelchair and the total cost was $10,000, the ID Waiver could cover $5,000 and MFP could cover the additional $5,000. Someone using MFP to transition may qualify for temporary rental payments while home modifications are being completed.

certain types of homes meet MFP qualifications, youll need to make sure youre looking at qualifying choices if youd like to take advantage of the benefits of this program.

Money Follows the Person DBHDS brochure, available at http://www.dbhds.virginia.gov/documents/ODS/omr-wvr-MFP-Brochure.pdf

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Types of Residential Supports Can Someone with Complex Needs Use a Waiver? Absolutely! Remember, many states have no public ICFs and all individuals in those states are supported in their community. In fact, New Hampshire, Rhode Island, and Michigan are three good Complex Needs examples of states with no institutions that United The following are Cerebral Palsy ranks as top places in the country for examples of some of the overall quality of life and supports for people with 15 disabilities . In Virginia, the ID Waiver funds several needs community residential options including group homes, sponsored residents have who utilize placements, and 24-hour supports in someones own waiver supports: home (See the section on ID Waiver Services for more Tracheotomy complete definitions of these options). People with very significant levels of needs can be supported in all of G or J tubes these settings through the waiver. Kidney failure/dialysis It is important to note that not all homes provide the same exact services. For example, one provider of residential services may specialize in complex medical needs but may be less experienced with challenging behaviors. You will work with your team to identify a provider who has the knowledge, skills, and abilities to support your loved one. Remember, no one will move until appropriate supports are in place and the whole team will provide ongoing follow-up to ensure the transition is successful.

Behaviors that may be dangerous to self or others Frequent seizures PICA Limited or no mobility

Keep in mind that over the coming years, waiver reform is anticipated that would expand the scope of services the ID waiver funds. This could mean that a particular service that cannot be supported under the waiver today may be possible before the time your loved one moves into a community placement. Actively work with your transition team to stay abreast of these developments. What about Community ICFs? The training centers are classified as Intermediate Care Facilities or ICFs. Houses with this same licensing classification also exist in the community for individuals who need a level of medical care or specialized supports not currently available in a group home. These homes are funded through the same funding streams as the training center and not through Waiver funding. Community ICFs look very much like group homes from the outside in that they are in integrated communities in houses that typically have 5-8
United Cerebral Palsys The Case for Inclusion Rankings Map 2012, available at: http://www.ucp.org/thecase-for-inclusion/2011/ranking_map.html
15

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residents, though they may have more. However, they have increased requirements for nursing care and they have contracts with specific physicians in the community. You would not use a waiver in a community ICF, just as you do not use a waiver in the training center. Community ICFs are not operated by the state, but are instead run by private providers and sometimes by local counties. Since they are privately operated, they have discretion in accepting the individuals they serve. Community ICF placements are still funded through Medicaid, but in specific contracts for each person needing services. If your team is unable to locate another type of provider that can serve your loved one, you may consider a community ICF. Sometimes the same providers who offer group homes offer ICFs too. This may offer an opportunity for your loved one to move to a group home in the future when a group home or other residential option can meet their needs. Remember that the DOJ settlement emphasizes community placements that are small (4 or fewer clients), so you will likely be asked to explore placements in that category first to see if they meet the needs of your family member with a disability. Life Estates A life estate exists when a property is owned by someone only for their lifetime. For example, a family could choose to leave their home to their child with a disability. That child could become a life tenant who is entitled to live in that home for the remainder of their life. Upon the death of the person with a disability, ownership of the home would either revert to another family member, a non-profit, or a combination of both. The advantage of a life estate is that you can ensure your child will be able to live in the exact same home for their entire life. If you choose to work with a non-profit service provider, you may want to arrange the situation so that they were responsible for providing care attendants and other services in the home 24 hours a day as well as for finding roommates who would also receive supports in the home. Upon the death of your child, the non-profit would become the homes owner and would use that home to provide housing for other people with disabilities. If youre interested in ensuring your home becomes your loved ones home, you may want to consider this option. You may feel that a particular residential support option is the right choice, but wonder what will happen if something goes wrong. In this case, an ounce of prevention is worth a pound of cure. The best thing you can do to prevent a troublesome situation in the future is do thorough planning ahead, select providers who are well equipped to support your loved one, and have trial visits before a move is complete. If, despite all your planning, there are still challenges, there are a number of options to help you resolve the issue. For example, if you feel that most things are going well, but one particular need or want is not being addressed, call your loved ones support team in for a meeting. Give specific examples of what is not working and brainstorm on solutions. Perhaps the provider can increase staff training, offer new alternatives, or make other minor changes to alleviate
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your concerns. Youll never stop working as a team to put all of the right supports into place. If you feel there is a serious threat to health and safety, see APPENDIX A and contact the people highlighted in yellow. They are groups designed to respond immediately. They may come on site to help assess the situation and work with providers on a corrective action plan. They could also assist with training. If you feel that a behavioral or mental health crisis is happening, you should call the START 24-hour crisis team (APPENDIX B) to come and intervene. They can stay in the individuals home for up to 72 hours and have a regional respite home where individuals can stay for up to 30 days. Providers could use that time to get increased training and resources in place. If, after all of these options have been exhausted, you still feel the situation is not working, talk to your team about selecting a different service provider. Learn from what caused troubles the first time and make sure the next provider is able to address those concerns appropriately.

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Medicaid and Waivers All Waivers in Virginia are Medicaid Waivers, meaning that Medicaid funds the services used under each waiver and the support services are authorized by Medicaid. Anyone using a waiver must also have Medicaid. In Virginia, when someone is given a new waiver, they are not automatically enrolled in Medicaid. Instead, along with the letter awarding the waiver, you will receive a letter that advises the Department of Social Services to consider your Medicaid application under special Long Term Care rules. These rules allow someone to qualify for Medicaid with more leeway than someone would typically be granted. This special type of Medicaid is called Long Term Care Medicaid because waivers fund long term care services. For example, if a person who did not have a waiver applied for Medicaid, their combined family income could be no more than 80% of the federal poverty level.16 However, someone with a disability can earn up to 300% of the current Supplemental Security Income (SSI) monthly payment if theyre eligible for Long-Term Care Medicaid because they have a waiver. As of January 2013, this payment was $710, meaning a person with a waiver can earn up to $2130 per month and still qualify for Medicaid. This is the standard in Virginia, but check with the Department of Social Services in your area if you are planning for the person with a disability to move out of state. In order to be eligible and stay eligible for Medicaid, a person cannot have more than $2,000 in assets in his or her name at any one time. Assets include savings or checking accounts, stocks, bonds, CDs, and other countable resources. If your loved one has more than $2,000 in assets, you will need to look into options that would assist him in qualifying for Medicaid. If someone has a small amount of money over the limit (e.g. $2,500 in total assets), you may be able to spend down $500 on needed medical equipment or other needed items to get the person with a disability within the $2,000 limit. If your loved one has significantly more than $2,000 in his or her name, you should consider a Special Needs Trust. Medicaid and Special Needs Trusts A Special Needs Trust is a unique way to allow a person with a disability to maintain assets and still qualify for state and federal benefits. The trust holds money, property, stocks, or other goods for the benefit of the person with a disability. Family members or friends can put money in the trust for the person. This is called a Third Party or Family Funded Trust. These trusts hold assets that the person with a disability never owned directly, but that have been left to the trust for the sole benefit of the person. If a person with a disability already has more than $2,000 in assets in their name or they receive a large sum of money from a Social Security back payment or a settlement, they
The Commonwealth Institutes Medicaid Expansion in Virginia under the New Health Care Law, available at http://www.thecommonwealthinstitute.org/wpcontent/uploads/2011/08/100715_medicaid_expansion_under_new_hc_law_REPORT.pdf
16

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may open a First Party or Self-Funded Trust. A person can have just one type of trust, or two or more trusts depending upon the source of the money going into the trust. With any trust, there are specific rules that must be followed to ensure that benefits are never jeopardized. You should work with an experienced Special Needs Trust or a lawyer with experience in this area to explore the options available and determine how to best maintain a trust for your loved one. For a list of Special Needs Trust contacts in Northern Virginia, see APPENDIX A. If you already have a trust for your loved one with a disability, be sure it is a Special Needs Trust. A standard trust does not protect benefits and other services. Special Needs Trusts are governed by federal rules, so you do not necessarily have to establish the trust in the state where your loved one will live. Talk to the trust administrators about their familiarity with other states and how they can continue to serve you if you move out of the area.

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PROVIDERS AND THEIR SERVICES You will work with your transition team to identify providers that will suit the needs and wants of your loved one. Below is a list of residential and vocational service providers in Northern Virginia if you would like to explore options or ask them questions directly. Be sure to notify your transition team of any contacts you make so they may assist you in planning. Your team will assist you with the entire process, so you do not need to contact these providers on your own unless you would like to do so. Please note that the address given is the main office address. Program sites may be located in other areas. Also keep in mind that new programs open on a regular basis, so you should keep in touch with your Support Coordinator about any emerging options. This list only includes providers contracted by the Community Services Boards in Alexandria, Arlington, and Fairfax-Falls Church. If the person leaving the training center is moving to another jurisdiction, contact the CSB where they will live to get a list of local providers. If the person is moving out of state, talk with the community-based services administrators at the destination to locate appropriate providers.

All Eyes on You

Keep in mind that once your loved one moves into a community placement, lots of people will see him or her to provide oversight. Some examples are: Home staff Home managers and directors Neighbors Community members at restaurants, social events, outings Support Coordinator Vocational staff Vocational managers and directors Transportation staff Friends at home, transportation, or job site

Each provider has different abilities, skills, knowledge, and staff. All providers are licensed by the state and must meet the same minimum standards for support and care. Oversight of all providers has greatly increased under the DOJ settlement and will remain at a heightened level throughout the settlement and beyond. Some providers have specialty services or staff available. During your tours, be comfortable asking about the specific services your loved one needs or desires. It is very important to take tours and get comfortable with the idea of your loved one being supported in a new setting. Seeing the homes and job supports in person can be very helpful in allowing you to visualize the transition. Dont hesitate to ask for references from other individuals served by these providers to get a feel for their abilities, history, and problem solving processes. Really work with those who support your loved one on a daily basis to get the best information on what your loved one really needs, not just what they have now. For example, some people in the training center are lifted with a mechanical lift in and out of the shower even when they could bear weight. However, if your loved one can bear any weight during moving, it may provide tremendous physical benefit to them to work with a provider who is willing to help them do that. Dont assume that someone needs supports
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identical to what they have now. Community-based living is designed to be person centered, meaning it should be highly customized to meet the needs of each person, not simply follow standard protocols. Remember that new providers are coming to the area often. Many of them have experience in other parts of Virginia or out of state. Stay in contact with your transition coordination team members to meet with these new providers as they come available. You may be able to work with a new or existing provider as they build or modify a home which presents a unique opportunity to give input into how the home could be customized to support your loved one. You may find that, despite great planning, the providers you initially identify are not the right fit. If you decide to look at other options, start touring new providers immediately and work with your team, including the new providers, to plan for a move to a new home or job. Support Coordinators can help you identify other providers that will meet the needs of your loved ones, but they cannot give personal endorsements as each persons situation is unique and what worked for someone else may not work for your loved one. You can expect Support Coordinators and providers to share general information about successes of other individuals with similar needs and help you decide where to start looking first. Northern Virginia Service Providers
Provider
Alexandria City CSB Alexandria Vocational Services Chimes

Address
720 North Saint Asaph St. Alexandria, VA 22314 3105 Colvin St. Alexandria, VA 22314 3957 Pender Dr., Suite 120 Fairfax, VA 22030 17932 South Fraley Blvd, Suite 300 Dumfries, VA, 22026 9401 Lee Hwy, Suite 406 Fairfax, VA 22031 14160 Newbrook Dr. Chantilly, VA 20151 8136 Old Keene Mill Rd, Suite B300 Springfield, VA 22152

Website
www.alexandriava.gov/CSB

Phone
(703) 838-6400

Services Provided
Residential Day Support Day Support Residential Day Support Residential Residential Residential Day Support In-home supports Residential Independent Living Day Support Supported Employment Supported Employment Day Support

Contracted CSBs
Alexandria

www.alexandriava.gov/uploa dedFiles/dchs/info/Service.pd f www.chimesva.org

(703) 746-3333

Alexandria

(703) 267-6558

Fairfax Alexandria Fairfax Alexandria Fairfax Alexandria Arlington Fairfax Alexandria Arlington Fairfax Arlington

Community Concepts, Inc. Community Living Alternatives Community Residences Community Systems

www.Comconinc.net

(703) 680-5127

www.cla-va.org

(703) 352-0388

www.communityresidences.org

(703) 842-2300

www.communitysystems.org

(703) 913-3150

Didlake

8621 Breeden Ave. Manassas, VA 20110

www.didlake.org

(703) 361-4195

Fairfax Alexandria

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Provider ECHO Works

Address 71 Lawson Rd SE Leesburg, VA 20175

Website www.echoworks.org

Phone (703) 779-2100

Services Provided Supported Employment Day Support Residential Residential Day Support Residential

Contracted CSBs Fairfax

Elite Healthcare Services LLC Estelle Place/Jireh Place LLC Gabriel Homes

None

(240) 460-8083

Alexandria

17290 River Ridge Blvd. Woodbridge, VA

www.estelleplacellc.com

(703) 221-9600

Alexandria

PO Box 710207 Herndon, VA 20171

www.gabrielhomes.org

(703) 476-1592

Fairfax

Hartwood Foundation Heritage House of Virginia Jewish Foundation for Group Homes Job Discovery Inc.

3702 Pender Dr., Suite 410, Fairfax, VA 22030 1075 Garrisonville Rd., Suite 109 Stafford, VA 22556 1500 East Jefferson St. Rockville, MD 20852

www.hartwoodfoundation.com

(703) 273-0939 (540) 657-9399

www.hhofva.com

Residential In-home supports Residential Residential Transitional day support Supported Employment Day Support Residential Residential In-home supports Residential Supported Employment Day Support Supported Employment Day Support In-home supports Supported Living Residential Sponsored residential In-home supports Supported Employment Day Support Supported Employment Day Support

Fairfax Alexandria Fairfax

www.jfgh.org

(240) 283-6000

Fairfax

10345 Democracy Lane Fairfax, VA 22030 2070 Chain Bridge Rd., Suite G55 Vienna, VA 22182 2474 Ontario Road NW Washington, D.C. 20009-0971 750 South 23rd St. Arlington, VA 22202

www.jobdiscovery.org

(703) 385-0041

Fairfax Alexandria Arlington Fairfax

Langley Residential Support Services LArche

www.langleyresidential.org

(703) 893-0068

www.larchewashingtondc.org

(202) 436-1133

Arlington

Linden Resources

www.linden.org

(703) 521-4441

Fairfax Alexandria

MVLE

Pathway Homes Resources for Independence of Virginia Service Source Saint Colettas

7420 Fullerton Rd., Suite 110 Springfield, VA 22153 10201 Fairfax Blvd, Suite 200 Fairfax, VA 22030 10340 Democracy Lane, Suite 103 Fairfax, VA 22030 6295 Edsall Rd. Suite 175, Alexandria, VA 22312 207 South Peyton St. Alexandria, VA 22314

www.mvle.org

(703) 569-3900

Fairfax Alexandria Fairfax

www.pathwayhomes.org

(703) 876-0390

www.sunrisegroup.org

(703) 218-1800

Fairfax Alexandria Arlington Fairfax Alexandria Fairfax Alexandria

www.servicesource.org

703-461-6000

www.stcoletta.org

(571) 438-6940

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Provider St. Johns Community Services

Address 7611 Little River Tpke, Ste 203 West Annandale, VA 22003

Website www.sjcs.org

Phone (703) 914-2755

Services Provided Residential Day Support Supported Employment In-home supports Residential

Contracted CSBs Fairfax Alexandria Arlington

Volunteers of AmericaChesapeake

14381 Hereford Dr. Woodbridge, VA 22193

www.voaches.org

(703) 590-1969

Fairfax Alexandria Arlington

Pre-Tour and Post-Move Processes

The process of starting to look at providers, touring, planning, and moving will likely take around 12 weeks if the process moves quickly and an appropriate provider is identified. The process can go more quickly if needed, but it can also be extended if you have difficulties locating the ideal provider or if modifications need to be made by the selected provider. The steps below will happen during the transition period to ensure a move is appropriate and well planned. Before Touring: Once a residential or vocational provider is identified as a possible choice for someone leaving the training center, the Community Integration Manager on your support team will notify the Office of Licensing and the Office of Human Rights. (Note: If a provider has been reviewed within the last 30 days, the review will not reoccur at this time.) A licensing specialist will prepare a report on whether or not the proposed provider is able to offer the necessary and requested services. This review will be based upon a site visit or the licensing specialists knowledge if they are already familiar with the proposed provider. The licensing specialist will submit their review of whether or not the proposed provider is able to offer the services requested to the Human Rights office, the Community Integration Manager, and the Community Resource Consultant. After Touring: If an individual successfully completes a tour with a provider and selects them, the Community Integration Manager will again notify the Office of Licensing and the Office of Human Rights. The licensing officer (and Human Rights if needed) will again visit the provider and ensure that they are able to meet the specific needs (medical, physical, behavioral, etc.) for the individual seeking placement based upon the needs outlined in the individuals Person Centered Plan. The licensing specialist will notify the team if any adjustments need to be made before someone moves, if the placement is suitable as it is, or if the placement cannot be made suitable. This information will be shared with the provider and the support team. If there is a good match, a discharge date from NVTC will

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be selected and planning for a transition to the community will likely begin with day, evening, and or/overnight and training visits with the new provider. After the Transition: The licensing specialist will visit about once per week for the first month. They will continue to visit monthly for the first year after starting a new service. A representative from the Office of Human Rights will visit around the end of the first month and as needed thereafter. The Community Resource Consultant will visit towards the end of the second month to review the transition plan, interview staff, and meet with the individual. For a full list of all the visits that will occur after an individual moves, please see Appendix C.

TIP: Consider additional services like recreation activities. For example, SPARC offers a SPARC On Wheels program where recreation staff come to homes in the evenings to do fun activities like cooking, games, music, and art. This would not interfere with your loved ones existing residential supports, but would offer a fun option for the evenings. For more information, see www.sparcsolutions.org or call (703) 338-6185

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Provider Checklist When considering providers, ask lots of questions! Consider these questions, but also make a list of your own to take with you on every tour. Also think about having someone go with you to give second opinions and take notes as you ask questions. What makes you a unique provider? What is your philosophy on care? What are your specialties? What training do you have? Your staff? How often do you update these? What is the staff turnover rate for this home and others that you operate? Can all staff give medications? Can you accommodate special diets? Can you work with a nutritionist if needed? How are meals planned? What happens with someone is sick or injured? (Many providers go with individuals to the hospital and stay with them the entire time theyre admitted) How do you monitor the quality of your services and staff? What is the average day like for a resident? How many individuals do you serve? What is your staff to client ratio? When are managers and supervisors on site? Do you have nurses on call and/or nursing oversight? How often do they see residents? How do you serve individuals who need ongoing therapies not covered through the ID Waiver? Do you offer references? Who would I contact if I had a concern? Do you have a corporate and a local office? Are you a non-profit or for profit business? What is the staffing pattern/shift schedule? How long have you been in operation? What is the status of your licensure? Has it ever been suspended or revoked? When does your current license get renewed? (Visit http://lpss.dbhds.virginia.gov/ to see past licensing reports) How is your program customized to meet the needs of each individual? Can you give examples of special supports you have put in place to meet the needs of individuals with medical or behavioral needs?

What is your philosophy on dealing with behavioral episodes that are more difficult than usual?

Who provides transportation to and from work, medical appointments, and recreational activities? (Many providers are able to provide transportation through their own accessible vehicles for some activities) Who cleans the homes and how often? How many clients live in each home? What are their approximate ages, needs, schedules? Is the home fully accessible? Is it designed for individuals to age in place?

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What are your policies on vacations and visits? Are individuals able to attend religious services of their preference? How are costs for rent, food, and activities covered? How/when do these costs vary? Do you own or rent the homes? How large is your organization? What are your funding streams? Who manages the individuals Social Security benefits and other income? Can my loved one share their home with a friend from NVTC? Can I visit the home when the residents are there? Do you allow unannounced visits by family and loved ones? Use your eyes, ears, and instinct. Look for accessibility features (e.g. ramps, bathroom bars), safety features (e.g. smoke alarms, screens, locks, fences), general repair, smell, and overall appearance to assess a home. Observe staff and client relationships and dynamics. Is this a place you would want to live?

Keep the answers to these questions in a convenient place. If you arent sure you understood something, follow up with the provider to make sure you have the correct information. Record the name of the person with whom you spoke and their contact information. Keep this together with contacts for day to day concerns, questions about an individuals plan, concerns about care provision, and after hours emergencies. If you dont feel you got the complete picture, ask to tour again.

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MICROBOARDS What is a Microboard? A Microboard is a group of family and friends who care about a person with a disability and volunteer their time to help support that person. Microboards can also have members like lawyers, landlords, and accountants who are willing to volunteer their time to assist in support planning and management for a person with a disability. In Virginia, a Microboard can pay TIP: a small fee to be considered a non-profit corporation. Even if you dont use a Microboards do not take the place of your support team. They are another way for families to ensure that knowledgeable, caring friends and family are involved with the ongoing support of their loved ones. Microboards work with the support team to advocate for the person with a disability.

microboard, make sure your loved ones history and needs are recorded. Consider making sure the following is available in print to all providers: All diagnoses Tips to get the person to take medication How someone calms down What makes someone happy, sad, frustrated Where someones equipment was purchased and repaired Names/contact info for family Names/contact info for all providers in the past

Why Use a Microboard? Microboards are still relatively new in Virginia, but they have taken off in other states like Tennessee. They offer a number of wonderful advantages and options for people with disabilities and their families. A Microboard means that someone with a disability has more people than just parents or a sibling working on their supports. While someone with a disability will always have a formal support team that includes a support coordinator, provider(s), and other people who work to support the individual, members of that team will change over time if someone leaves their job. The Microboard members are friends and family who have known the individual for a long time and will continue to serve on the Microboard for the life of the individual, unless they decide to leave for personal reasons.

A Microboard also means that there are more than just one or two family members who know someones history and is involved in their life. Families can use the Microboard to help collect and maintain information about someones needs and wishes so that information remains available if parents or other relatives pass away or become incapacitated. Microboard members can lend extra eyes and ears to the oversight of care.

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You may even want to consider naming a Microboard the individuals guardian if a guardian is needed. Microboards help provide solutions and manage supports. When an individual is facing a crisis or a problem, Microboards act as a team to help problem solve and assist in managing concerns. Microboards can also help manage staff hired to support someone with a disability or manage other waiver services so that burden doesnt fall on a single family member. If a family has a home they would like the person with a disability to live in to receive supports, the Microboard can manage that property. Microboards can qualify for special low interest loans through the Virginia Housing Development Authority to help a person with a disability live in a home owned and managed by the Microboard. Microboards are meant to be sustainable. The Microboard will develop bylaws, a meeting schedule, a succession plan, and a scope of authority. All of that can be changed over time, of course, to adapt to changing needs. You can set up a Microboard at any time and the Microboard can grow in size or scope as needed. How Do I Learn More about Microboards? Though small in numbers right now, there are already dozens of Microboards established in Virginia. No two are identical as they are all tailored to meet the needs of the individual they support. To learn more, we suggest you contact the newly founded Virginia Microboard Association at VirginiaMicroboards@gmail.com or call (757) 460-1569. The association was established to help people learn more about Microboards and to help them get started. They are available to share resources, ideas, and experiences.

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Glossary Conservator- Decision maker appointed by the court to make financial decisions for a person who has been deemed incapacitated. The conservator handles the persons estate and/or financial affairs as specified in the court order. http://www.vda.virginia.gov/pdfdocs/Guardbook.pdf CSB (Community Services Board)- The local government agency responsible for coordinating services and supports for people with intellectual disabilities as well as those with mental health and substance abuse needs. CSBs in Northern Virginia are divided up by county or city. The CSB will help you manage your waiver and will provide your support coordinator. http://www.vacsb.org/ DMAS (Department of Medical Assistance Services)- The Virginia state agency that administers Medicaid. DMAS also manages the Developmental Disability (DD), Elderly or Disabled with Consumer Direction (EDCD), and some other waivers, but not the ID waiver. http://dmasva.dmas.virginia.gov/ DBHDS (Department of Behavioral Health and Developmental Services)- The governmental department in Virginia that coordinates Intellectual Disability Services. This department also manages the ID Waiver. DBHDS is the state agency that is tasked with fulfilling the terms of the Department of Justice Settlement Agreement. http://www.dbhds.virginia.gov/ Guardian- Decision maker appointed by the court to make decisions regarding personal affairs (e.g. support, care, health, safety, habilitation, education, treatment) for an individual who has been deemed incapacitated. http://www.vda.virginia.gov/pdfdocs/Guardbook.pdf Medicaid- The federal health plan for people in poverty and for people with disabilities. State plan Medicaid is health insurance for people with qualifying incomes. Long Term Care (LTC) Medicaid is the type of Medicaid that funds ID Waivers and all other state waivers. Someone may have both Medicaid and Medicare at the same time. Medicaid is always a secondary insurance unless there is no other insurance. http://dmasva.dmas.virginia.gov/ Medicare- The federal health plan for people aged 65 or older. People with disabilities may receive Medicare younger than age 65 if they meet certain criteria, like when a parent is also Medicare eligible and a child has been receiving Social Security disability benefits for 24 months. Someone may have both Medicare and Medicaid at the same time. http://www.medicare.gov/

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MFP (Money Follows the Person)- A special option for someone leaving a training center or other institutional setting and moving to community-based services where for or fewer unrelated people live together. MFP provides extra funding for transition services for someone who qualifies. http://www.dbhds.virginia.gov/ODS-MoneyFollowsPerson.htm Microboard- A mini-corporation designed to help coordinate services and supports for one person with a disability. The microboard is made up of family, friends, supporters, and specialists who all want to ensure a persons success. http://www.communityopportunities.org/ArcNRV/Microboards_2.html Person Centered Plan (PCP)- The annual plan that details the talents, strengths, and needs of an individual that is created by their entire support team. This plan also lists the services to be provided, goals to be met, and deadlines for all activities. The plan is always revised annually but can be updated or changed at any time. http://www.dbhds.virginia.gov/ODS-PersonCenteredPractices.htm#forms Personal Support Team (PST)- The team of professional who will work with you and your loved one with a disability to plan for transition and ongoing support services. The team will include your Support Coordinator, NVTC staff, specialists and staff who know your loved one, and the providers you select for vocational and residential services. Regional Support Team (RST)- The regional team comprised of disability support experts who overviews transition barriers and makes recommendations on placement options. Your case will go before the Regional Support Team based upon a referral from either the Community Integration Manager at the Training Center or the Community Resource Consultant from DBHDS. You may ask for a referral. Settlement Agreement- The legal settlement between Virginia and the Department of Justice that includes provisions for people currently living in training centers, nursing homes, and people already living in the community who may or may not be utilizing a Waiver to fund supports. It is a ten year agreement that focuses on ensuring Virginia is no longer in violation of disability rights law. SIS (Supports Intensity Scale)- An assessment of the types of supports a person with a disability needs to be successful in completing a variety of daily and life activities. The support team will complete the SIS every three years and update as needed in the interim. http://www.dbhds.virginia.gov/ODS-SIS.htm Special Needs Trust- A unique type of trust fund designed to allow a person with a disability to maintain eligibility for state and federal benefits while also maintaining resources. The Special Needs Trust can be funded by the person with a disability (through already existing assets) or by friends and/or family members. http://thearcofnovatrust.org/

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Support Coordinator (Case Manager)- The person through the Community Services Board who works with someone with a disability to help them identify, access, and maintain supports through the persons ID Waiver. Support coordinators also help someone identify and utilize programs outside the waiver (e.g. housing resources, grants) that may benefit the person. http://www.vacsb.org/ Note that support coordinators under the DD Waiver are still called case managers, as are privately hired people who do this work. Waiver- A waiver is a bundle of long term care support services funded through Medicaid. Individuals leaving the training center will utilize the Intellectual Disability (ID) Waiver that is managed by the Department of Behavioral Health and Developmental Services. Waivers fund community-based supports including sponsored residential services, group homes, in-home services, crisis stabilization, job placement supports, day programs, and more. http://dmasva.dmas.virginia.gov/Content_pgs/ltc-wvr.aspx

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APPENDIX A- CONTACTS
Names highlighted in yellow are people you would contact in the event of an emergency or concern that needs immediate attention, such as an imminent risk of harm. Contact Name Adult Protective Services (APS) Contact Information Alexandria- (703) 746-5778 http://alexandriava.gov/dchs/adultserv ices/default.aspx?id=50398 Arlington- (703) 228-1700 http://www.arlingtonva.us/department s/HumanServices/AgingDisability/page 69844.aspx Fairfax- (703) 324-7450 http://www.fairfaxcounty.gov/dfs/ State Hotline (after business hours) (888) 832-3858 Alexandria Community Services Board (703) 746-3400 http://alexandriava.gov/CSB Alexandria residents should call their Support Coordinator about planning for transition, lining up community services, concerns about transition, provider tours, ID Waiver services Alexandria residents should work with their Long Term Care Eligibility Worker regarding their loved ones Medicaid eligibility Arlington residents should call their Support Coordinator about planning for transition, lining up community services, concerns about transition, provider tours, ID Waiver services Arlington residents should work with their Long Term Care Eligibility Worker regarding their loved ones Medicaid eligibility When Do I Call? If you suspect or see abuse, neglect, or exploitation of someone with a disability. If there is an immediate risk of harm, call 911.

Alexandria Division of Human Services

(703) 746-5700 http://alexandriava.gov/DCHS

Arlington Community Services Board

(703) 228-1700 http://www.arlingtonva.us/Department s/commissions/humanServices/CSB/CS BMain.aspx

Arlington Department of Human Services

(703) 228-1550 http://www.arlingtonva.us/Department s/HumanServices/HumanServicesMain. aspx

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Contact Name The Arc of Northern Virginia Attorneys/Lawyers for guardianship (Email addresses provided for attorneys who have made that information available on their websites)

Contact Information Info@TheArcofNova.org (703) 532-3214 http://thearcofnova.org/ All Serve Northern VirginiaJean Galloway Ball and Associates (703) 359-9213 http://www.uselderlaw.com/ Kenneth Labowitz (703) 519-0999 http://www.dingmanlabowitz.com Legal Services of Northern Virginia (If you meet the income requirements) (703) 778-6800 http://www.lsnv.org/ Needham, Mitnick, & Pollack (703) 536-7778 http://www.nmpattorneys.com/ Gerard Rugel (703) 709-9718 Alexander Soroko asoroko@sorokolaw.com (703) 224-8044 http://www.sorokolaw.com/ Kelly Thompson Kelly@kellythompsonlaw.com (703) 237-0027 http://www.kellythompsonlaw.com/ Michael Toobin mtoobin@toobinlaw.net (703) 354-7700 http://www.toobinlaw.com/ Elizabeth Wildhack (703) 237-0095 http://www.wildhacklaw.com/ Edward Zetlin ed@zetlinlaw.com (703) 379-0442 http://www.zetlinlaw.com/

When Do I Call? For information on advocacy, Special Needs Trusts, upcoming workshops and events, and assistance with information and referrals If you need to create or adjust an order for guardianship, conservatorship, or Power of Attorney

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Contact Name Autism Society of Northern Virginia

Contact Information

When Do I Call? If your loved one has autism and youd like more information on services available to them If your loved one has a brain injury and youd like more information on services available to them. If you are experiencing trouble related to discharge planning and your support team has not been able to resolve the issue

(703) 495-8444 http://www.asnv.org

Brain Injury Services

(703) 451-8881 http://www.braininjurysvcs.com

Community Integration Manager

For NVTCKelly Rinehimer kelly.rinehimer@dbhds.virginia.gov (703) 323-4049 State DirectorJae Benz Jae.benz@dbhds.virginia.gov (804) 371-5384 http://www.dbhds.virginia.gov/

Community Resource Consultants

See Appendix F for a list of the Region 2/Northern Virginia contacts

CRCs provide training and technical assistance to CSBs, providers, and training centers. Contact them if your support team feels extra help is needed. If you feel youre continuing to experience significant problems related to fulfillment of the terms of the settlement and you are unable to get assistance from your support team

DBHDS

Heidi Dix Settlement Agreement Executive Advisor (804) 786-3921 Heidi.dix@dbhds.virginia.gov Lee Price Director of the Office of Developmental Services (804) 786-5850 Lee.price@dbhds.virginia.gov http://www.dbhds.virginia.gov/ http://www.dsanv.org/ (703) 621-7129

Down Syndrome Association of Northern Virginia Elder Care Consultants

If your loved one has Down syndrome and youd like more information on services that may be available to them If youre interested in hiring a private case manager or advocate to look in on your loved one, help with planning, and advocate for their needs.

(703) 904-0191 http://www.eldercc.com/

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Contact Name Employment Coordinator

Contact Information Adam Sass (statewide) Adam.sass@dbhds.virginia.gov (804) 786-1203 http://www.dbhds.virginia.gov/ (703) 383-8500 http://www.fairfaxcounty.gov/csb/

When Do I Call? If youre having trouble with your support team when it comes to identifying integrated employment opportunities in the community Fairfax/Falls Church residents should call their Support Coordinator about planning for transition, lining up community services, concerns about transition, provider tours, ID Waiver services Fairfax/Falls Church residents should work with their Long Term Care Eligibility Worker regarding their loved ones Medicaid eligibility Before you transition, consider working with another family who has been through the transition process or an area expert on transition. These trained volunteers are willing to meet in person, talk on the phone, or exchange emails about your concerns and questions. If you feel the human rights of the person with a disability are being violated in any way or have been violated

Fairfax/Falls Church Community Services Board

Fairfax/Falls Church Department of Social Services

(703) 324-7500 http://www.fairfaxcounty.gov/dfs/

Family Mentor Network

Betty Vines, MFP Family Resource Consultant (804) 786-0618 (office) (804) 240-0180 (cell) betty.vines@dbhds.virginia.gov

Human Rights

For NVTCKevin Paluszak (703) 323-2098 State DirectorMargaret Walsh Margaret.walsh@dbhds.virginia.gov (804) 786.3988 http://www.dbhds.virginia.gov/OHRdefault.htm

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Contact Name Licensing

Contact Information NVTCCarrie Blackburn Carrie.blackburn@dbhds.virginia.gov (540) 785-0745 Anne Butz Anne.Butz@dbhds.virginia.gov (703) 323-2543 Chris Cart Chris.Cart@dbhds.virginia.gov (703) 323-2097 Tina Whitfield Johnson Tina.WhitfieldJohnson@dbhds.virginia.gov (703) 323-3197 Stephanie Terrell Stephanie.Terrell@dbhds.virginia.gov (540) 785-0745 State DirectorLes Saltzberg Les.Saltzberg@dbhds.virginia.gov (804) 786-1747 http://www.dbhds.virginia.gov/OLdefault.htm (800) 417-0908 info@MomsInMotion.net http://momsinmotion.net/ See Appendix B for the Region II Contacts

When Do I Call? If you feel that the rules for licensing and care are not being met by your provider or you have questions about licensing regulations

Moms In Motion

Service facilitation for the ID Waiver (if you choose to have your loved one live with you and use consumer directed services) When an individual is having a mental health or behavioral crisis to discuss crisis management. Your support coordinator and/or service provider may contact them on your behalf For information on how a microboard may be beneficial or how to get started in forming a microboard

START Program

Virginia Microboard Association

Linda Ritter virginiamicroboards@gmail.com (757) 460-1569

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APPENDIX B- START

VIRGINIA START is a systems-linkage approach to supports for individuals with an intellectual disability and/or developmental disability, and a mental health condition or challenging behavior that is negatively affecting their quality of life.
The underlying philosophy of START is that services will be most effective when everyone involved in supports and treatment is allowed to participate actively in collaborative treatment planning and service decisions. START emphasizes the prevention of crises before they occur. This is done through early identification of individuals, development of crisis response plans, training, and technical assistance. START offers clinical assessment and support by using the following methods: Training and empowerment for families and caregivers; Effective positive behavior support approaches; Therapeutic tools developed in collaboration with medical, allied health, intellectual disability and mental health professionals; Community and home based crisis intervention and stabilization supports; A six bed residential therapeutic and planned respite facility; and Optimal utilization of existing resources through system linkages. Who is eligible for Virginia START? Individuals age 18 and older with an intellectual disability and/or a developmental disability and a co-occurring behavioral health need or challenging behavior that is affecting their quality of life. Who should be referred to Virginia START? Reasons for referral may vary. Some examples of reasons for referral include: individuals at risk of losing their home or job due to behavioral concerns, have a history of complex medical, behavioral, and/or trauma related issues, have exhibited a significant deterioration in functioning over the past 24 months, have been hospitalized or admitted to a psychiatric hospital or training center, or have exhibited behavior that resulted in contact with law enforcement or jail. Who can make a referral to Virginia START? Referrals may be made by individuals and families, current support and medical providers, CSB Support Coordinators/Case Managers/Clinicians, or other natural supports in a persons life. How do I make a referral to Virginia START? See contact information in your region. When will Virginia START be ready to take referrals? You can make a referral now!

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Contact Information for Regional START Programs Region I- Easter Seals UCP
START Director-Kelly Watson kelly.watson@eastersealsucp.com 540/259-1028 Jarret Stone, LCSW Jarret.stone@eastersealsucp.com 919/943-7585 HPR I ID Crisis Services Project Manager: Gail Paysour Gail.Paysour@regionten.org 434/970-2148

Region II (Northern Virginia)- Easter Seals UCP

START Director-Philippe Kane Philippe.kane @eastersealsucp.com 571/409-0377 Jarret Stone, LCSW Jarret.stone@eastersealsucp.com 919/943-7585 HPRII, ID/MH Crisis Services Project Manager: Lyanne Trumbull, LCSW lyanne.trumbull@fairfaxcounty.gov 703/449-6304 24 Hour Crisis Line- 855-89-START

Region III-New River Valley Community Services

START Director-Denise Hall, LCSW info@swvastart.org 1-855-88-START Fax: (540) 267-3403

Region IV-Richmond Behavioral Health Authority

START Director-Ron Lucas lucasr@rbha.org 1- 855-282-1006.

Region V- Hampton-Newport News Community Services Board

START Director-Dona M. Sterling-Perdue, MSW donas@hnncsb.org 1- 855-80-START (855-807-8278)

Virginia Department of Behavioral Health and Developmental Services

State Liaison: Bob Villa, Office of Developmental Services Bob.villa@dbhds.virginia.gov 804/371-4696
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APPENDIX C- POST-MOVE MONITORING SCHEDULE

Key- TC= Training Center Staff, OL= Office of Licensing, CSB= Community Services Board Support Coordinator, CRC = Community Resource Consultant, OHR= Office of Human Rights

APPENDIX D- LIMITED GUARDIANSHIP/CONSERVATORSHIP AND ALTERNATIVES

Limited Guardianship and Alternatives to Guardianship
Limited Guardian of the Person: The courts can limit or specify the authority and responsibilities of the guardian to specific areas of the individuals life; such as medical and health care decisions. For example, the courts can maintain specific rights for an individual through a written order like the rights involving voting, marriage, and driving. Medical Power of Attorney: An agreement that grants an individual the authority to act on someone else's behalf for health-related matters. This allows the individual to make decisions about things like medical treatments, prescriptions, and nursing home arrangements. Durable Power of Attorney: A durable power of attorney will remain in effect for the person designated as an individual with the authority to act on someones behalf even if the individual later becomes mentally incapacitated. General power of attorney: The general power of attorney gives the agent broad power to do almost anything for the principal. However, if the principal is later deemed incapacitated, the General Power of Attorney is no longer valid. Representative Payee: A person appointed by the Social Security Administration to manage an individuals governmental benefits to pay living expenses and daily needs. Temporary Guardianship: For specific reasons, a person can be appointed as temporary guardian on a time-limited basis. For example: to assist in moving an individual to a residential placement; to make medical decisions, etc. Please refer to an attorney for further guidance.

Limited Conservatorship and Alternatives to Conservatorship

Limited Conservatorship: The courts can limit the authority of the conservator to specific areas of the individuals life. For example, the sale of a property, establishing a trust, or handling estate matters. Limited conservatorship can also be time-limited. Trust: An arrangement with a trustee (another person, an attorney, an organization or a financial institution) to manage property or assets for the benefit of an individual. Financial Power of Attorney: An individual appointed to serve as an individuals agent to make decisions on their behalf. General power of attorney: The general power of attorney gives the agent broad power to do almost anything for the principal. Representative Payee: A person appointed by the Social Security Administration to manage an individuals governmental benefits to pay living expenses and daily needs. Temporary Conservatorship: For specific reasons, a person can be appointed as a temporary conservator on a time-limited basis. For example: to assist in moving the individuals assets to another agent; to manage assets of an estate; to make financial decisions regarding buying or selling property such as a home or car; to handle an inheritance, etc.

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APPENDIX E- DIFFERENCES BETWEEN AUTHORIZED REPRESENTATIVES AND GUARDIANS

Authorized Representatives and Court Appointed Legal Guardians for Adults in Virginia Similarities and Differences*
___________________________________________________________________________________ Mandatory Disclosure: This document contains general information and is not intended as legal advice. ___________________________________________________________________________________ Generally speaking, both Authorized Representatives (ARs), formally known as Legally Authorized Representatives (LARs), and Court Appointed Guardians (CAGs) are types of Surrogate Decision Makers who help individuals that need assistance in making life-decisions and/or authorizing consent to release legally protected health care and other information. The major difference between ARs/LARs and CAGs is the scope and type of assistance that can be provided and legal safeguards available to ensure that individuals at risk (the Clients) are properly protected. Authorized Representatives (ARs/LARs) 12 VAC35-115 et seq., Administrative Code of Virginia An AR/LAR is a volunteer (usually a family member) who has authority to consent to medical procedures, treatment and the release of protected medical and treatment information for individuals receiving services funded, licensed and/or operated by the Department of Behavioral Health & Developmental Services (DBHDS). ARs/LARs are governed by the rules and regulations in the Virginia Administrative Code, including Human Rights Regulations (see 12 VAC35-115 et seq.). In an environment operated by DBHDS, which provides a wide array of services and 24-hour per day supports and crisis management, an AR/LAR is a cost-effective tool to help clients who otherwise would have no one to speak on their behalf. However, it is important to note that ARs/LARs have no recognized legal authority in community settings that are not under DBHDS jurisdiction. Nor are ARs/LARs permitted to help an individual with other life issues such as housing, transportation, support and safety once outside the jurisdiction of DBHDS. So while ARs/LARs are very effective in certain circumstances, their scope of authority is very limited. Court Appointed Guardians (CAGs) 64.2-2000 et seq., Code of Virginia A CAG can be authorized by a Circuit Court in Virginia, only after clear and convincing evidence has been presented to prove an individual is legally incapacitated and requires assistance. There are many legal safeguards to ensure that persons appointed to serve as Guardians have a legal duty and responsibility for making decisions, when necessary, regarding the incapacitated persons support, care, health, safety, habilitation, education, therapeutic treatment, transportation, residence and other life decisions depending on the authority granted by the Circuit Court and outlined in the Guardianship Court Order (see 37.2-1000 et seq.). Guardians in Virginia are required to be bonded and must report to the Department of Social Services annually on the incapacitated persons well being and treatment. A Guardian in Virginia is considered a Fiduciary under the law and, unlike a volunteer, cannot resign unless a Circuit Court allows. A Guardian can also be replaced or substituted or eliminated altogether if the incapacitated adult has been restored and no longer needs a CAG. Guardianship is a very serious step and is only appropriate when there are absolutely no less restrictive alternatives to assist an individual (for more information on alternatives to Guardianship, see the Virginia Department for the Aging website at www.vda.virginia.gov under topics). Once appointed, a Guardians authority is (and must be recognized) in the entire Commonwealth of Virginia and other States as appropriate. Guardianship proceedings are costly and time-consuming. *Virginia Public Guardian & Conservator Program Guidance Document (March 2012)

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APPENDIX F- COMMUNITY RESOURCE CONSULTANTS

Gail Rheinheimer, Community Resource Manager Training and Technical Assistance PHONE: (540) 981-0697 FAX: (540) 857-6109 gail.rheinheimer@dbhds.virginia.gov
Region 1 Central Virginia Training Center Eric Williams Region 2 Northern Virginia Training Center Barry Seaver Region 3 Southwest Virginia Training Center Wanda Earp DBHDS 870 Bonham Road Bristol, VA 24201 (276) 669-7762 (276) 669-3306 (Fax) wanda.earp@dbhds .virginia.gov Alleghany Highlands Blue Ridge Cumberland Highlands New River Valley Karen Poe DBHDS 115 Wilkinson Drive Hillsville, VA 24343 (276)733-5176 (276)728-3745 (Fax) karen.poe@dbhds. virginia.gov DanvillePittsylvania Dickenson Mt. Rogers Piedmont Planning District 1 Region 4 Southside Virginia Training Center David Meadows DBHDS Central Office P.O. Box 1797 Richmond, VA 23218-1797 (804) 786-5813 (804) 786-5855 (Fax) david.meadows@dbh ds.virginia.gov Hanover Henrico Richmond Southside Region 5 Southeastern Virginia Training Center Xiomara Apicella DBHDS P.O. Box 6243 Portsmouth, VA 23703 (757) 434-5328 (757) 484-4047 (Fax) xiomara.apicella@dbh ds.virginia.gov Eastern Shore Portsmouth Virginia Beach Western Tidewater

DBHDS Catawba DBHDS Hospital P.O. Box 1797 5525 Catawba Richmond, VA Hospital Drive 23218-1797 Catawba, VA 24070 (804) 286-9008 (540) 375-4248 (804) 286-9011 (540) 375-4224 (Fax) (Fax) eric.williams@dbhds.vi barry.seaver@dbhd rginia.gov s.virginia.gov HarrisonburgRockingham Northwestern RappahannockRapidan Valley Kathy Witt Arlington Middle PeninsulaNorthern Neck* Prince William Rappahannock Area*
*outside region

Jen Kurtz

Andrea Coleman DBHDS Central Office P.O. Box 1797 Richmond, VA 23218-1797 (804) 371-2583 (804) 692-0077 (Fax) andrea.coleman@dbh ds.virginia.gov Chesterfield Crossroads District 19 Goochland-Powhatan

Michelle Guziewicz DBHDS P.O. Box 1797 Richmond, VA 23218-1797 (804) 286-9008 (804) 286-9011 (Fax) michelle.guziewicz@db hds.virginia.gov

DBHDS DBHDS 120 Tremough P.O. Box 1797 Drive Richmond, VA Wytheville, VA 23218-1797 24382 (804) 461-0256 (276) 223-3723 (276) 223-3295 jennifer.kurtz@dbhd (Fax) s.virginia.gov kathy.witt@dbhds.vi rginia.gov Central Virginia Region 10 Rockbridge Alexandria Fairfax-Falls Church Loudoun

Chesapeake Colonial Hampton-Newport News Norfolk

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