Copyright Kathleen Sciacca Collective works.

PROGRAM DEVELOPMENT FOR FAMILIES OF PERSONS

DUALLY DIAGNOSED WITH: MENTAL ILLNESS, DRUG
ADDICTION and/or ALCOHOLISM (MIDAA)

Kathleen Sciacca, M.A. 1

Introduction

This article will begin with an overview of the systemic issues that impede the provision of

comprehensive services for persons who have dual/multiple disorders of Mental Illness, Drug

Addiction and/or Alcoholism (MIDAA),2 and their families. The need for special interventions for

dually diagnosed clients and their families will be included. This will be followed by some details

about the family movement and traditional family programs. A pioneer special program for

families of the dually diagnosed (MICAA-NON) will be outlined in detail. This will include

engagement, content, dynamics, process, assessment and outcome.

In 1987, the Alcohol Drug Abuse and Mental Health Administration (ADAMHA) reported

that at least 50% of the 1.5 to 2 million Americans with severe mental illness abuse illicit drugs or

alcohol as compared to 15% of the general population (Ridgley, Osher, & Talbott 1987). In 1986,

the New York State Commission on the Quality of Care for the Mentally Disabled (NYS

Comm.1986) found that 50% of the clients admitted for psychiatric care across New York State

also had alcohol and substance abuse disorders that required treatment. Dually diagnosed clients

1Kathleen Sciaccais the founding Executive Director of Sciacca Comprehensive Service

Development for Mental Illness, Drug Addiction and Alcoholism (MIDAA).

2Mental Illness, Drug Addiction and Alcoholism, acronym MIDAA and Logo, are
registered trademarks of Kathleen Sciacca and Siacca Comprehensive Service Development for
MIDAA, NYC.
have been characterized as systems' misfits with poor outcome, more relapses, more acting out

behavior, and more likelihood of being homeless, than persons who have mental illness alone

(Minkoff & Drake, 1991).

Despite the documented high prevalence of persons who have dual disorders and the

serious consequences of poor treatment outcome, more relapses, more acting out behavior, and

the potential to become homeless, both families and providers encounter difficulty in accessing

comprehensive services for persons who have dual and multiple disorders of MIDAA. The

underlying issues are the same throughout the nation. They include the following:

Bureaucracies are divided and responsible for providing treatment for discrete disorders of
mental illness, drug addiction and alcoholism. These divisions have resulted in segregated
admissions criteria, treatment programs, services, and reimbursement.

Providers are educated and trained to deliver services for singular disorders and are not
prepared to provide services for unfamiliar symptoms (Ridgely, Goldman, & Willenbring,
1990).

Treatment approaches across these discrete disorders are different in method and
philosophy (Sciacca, 1991).

The more impermeable issues are the contrasting treatment methods used by providers in

the different fields. Traditional treatment methods for drug addiction and alcoholism are usually

intense and confrontational. They are designed to break down the client's denial of or resistance to

dealing with his or her addictive disorder. Admissions to substance abuse treatment programs

usually require abstinence from all illicit substances. Potential clients are expected to be aware of

the problems caused by substance abuse, and motivated to receive treatment. In some programs

the use of medication is unacceptable. This automatically excludes people who take prescribed

medication for their symptoms of mental illness. In contrast, treatment methods used for serious

mental illness are supportive, benign and non-threatening. They are designed to maintain the

client's defenses which are often fragile. Criteria for admission into mental health services rarely

require that clients are aware of their substance abuse problems and motivated to accept
substance abuse treatment. Clients entering the mental health system are generally not seeking

treatment for their substance abuse problems. They access mental health services either voluntarily

or involuntarily from a variety of entry points. This includes psychiatric hospitalization or crisis

care and transition into community mental health services, or direct engagement into community

mental health services. Mental health services range from the least formal such as case

management services to more formal and structured programs as clinic, day treatment or

continued care services. Clients are at various levels of readiness to accept treatment, but the

expectation and the goal is that they will participate in some form of mental health treatment,

including medication regimes for persons who have severe mental illness. There is not the same

emphasis and/or expectation that the dually diagnosed clients will also engage in substance abuse

treatment within these agencies since most of them do not include services for the dually

diagnosed. Frequently the clients we encounter within the mental health system who actively

abuse drugs and alcohol are not identified, and if they are, they deny such substance use.

These systemic differences perpetuate the gaps in services and eliminate the dually

diagnosed from existing substance abuse services. The traditional substance abuse services will

not accept clients who have a serious mental illness either because they do not meet the readiness

criteria, or because they are not prepared to provide services for symptoms of mental illness. If

accepted into a substance abuse program that is not modified, the dually diagnosed client may

experience difficulty when participating in an intense, confrontational program. Traditionally, the

mental health system attempts to eliminate the dually diagnosed client on the basis of substance

abuse at the point of admission. For clients within the system, services are interrupted or

terminated on the basis of rules that address addictive behaviors. For example, a client who

arrives at a treatment program with alcohol on his or her breath may be sent home or suspended

from services. Families who do not understand the addictions as disorders will accept these
determinations. Without knowledge of the necessity of professional treatment, family members are

not likely to perceive their relative's entitlement to addiction treatment. The result is frustration

and hardship for families who bear the burden of caring for a relative who does not receive the

benefits of professional help, or the pain and fear involved when a family can no longer provide

primary care. In such cases, the client loses the support of both the family and the service systems.

Community residences and other alternative living programs for the mentally ill eliminate the

dually diagnosed client by screening out mentally ill persons who are also substance abusers.

These program options are rarely accessible to clients who have dual disorders.

Working with clients who deny substance abuse, who are unmotivated for substance abuse

treatment, and are unable to tolerate intense confrontation, requires a new model of treatment.

Sciacca developed a "non-confrontational" approach to the engagement and treatment of the

dually diagnosed. The treatment model first developed in 1984 (Sciacca, 1987a) is based upon

non- judgmental acceptance of all symptoms and experiences related to both mental illness and

substance disorders. The phase by phase interventions from "denial" to "abstinence" (Sciacca,

1991) begins by assessing the client's readiness to engage in treatment (Sciacca, 1990). Readiness

levels are accepted as starting points for treatment, rather than points of confrontation or criteria

for elimination. Mental health and substance abuse programs which integrate these programs

implement screening forms to identify clients who have dual disorders (Sciacca, 1990). Identified

clients are followed up for engagement and assessment of readiness. Clients are encouraged

to participate in dual diagnosis treatment even if they do not accept or agree to the presence

of a substance disorder. A client may participate on the basis of her or his interest in learning

more about mental health and substance disorders or believe that he or she may be

able to lend support to others who are seeking help (Sciacca, 1991). The process proceeds from

identification to the engagement phase. The objective in the engagement phase is to develop
comfortable and trusting relationships and if possible to expose the client to information about the

etiology and processes of these illnesses in an empathetic and educative manner. The client is

provided with the opportunity to critique the information presented, rather than being told about

any particular fact. Interaction effects between symptoms of mental illness and substance disorders

are also included in this exploration. Clients at this phase are not required to disclose personal

experiences or to admit they use or abuse substances until they are comfortable to do so. Instead,

the inclusion of educational materials and discussion topics allows for discussion of the issues and

impersonal participation. Clients are encouraged to move along a continuum of acceptance of

their symptoms. This includes: (a) attaining a level of trust necessary to discuss their own use of

substances and/or symptoms of mental illness, (b) the exploration and subsequent discovery of any

problems or interaction effects that result from substance use and mental health symptoms, (c)

considerations and motivation for addressing these problems, (d) active engagement in a process

of treatment that seeks to eliminate symptoms, (e) the attainment of partial or full remission, and

(f) participation in an individualized maintenance regime for relapse prevention (Sciacca, 1991;

Sciacca & Thompson, 1996).

These programs (MIDAA treatment groups) are implemented as components of existing

mental health, or substance abuse programs, and thereby provide "Integrated Treatment."

They have been adapted for a wide variety of services including short-and long-term inpatient

units, acute care services, case management services, assertive community teams (ACT),

outpatient clinics, day treatment programs, continuing care programs, community residences,

shelters, and clubhouse models of service (Sciacca, 1987b).

The Family Movement

The National Alliance for the Mentally Ill (NAMI) is an advocacy group that began from

grass roots movements of families with mentally ill relatives in the 1970's and has since grown to
over 1,000 local chapters (Grosser & Vine, 1991). The "family movement" has a strong influence

on research and treatment of individuals with severe and persistent mental illness (U.S.News and

World Report, 1989). However, as recently as 1984 when pioneer programs were developed for

the treatment of persons with mental illness and substance disorders in the psychiatric facilities

(Sciacca, 1987a), many family members accepted a mental health system and a substance abuse

system that did not address their relative's addictive disorders.

Despite the serious problems experienced by persons who have dual disorders, and the

resulting consequences to family members, the family movement has not attained the degree of

knowledge about addictive disorders they have about mental illness. There is a need for education

that demonstrates that addictive disorders are illnesses. Understanding mental health symptoms as

an illness that is not caused by families was necessary to successful advocacy for the mentally ill.

The advent of psychiatric medications that corrected chemical imbalances and brought acute

symptoms into remission clarified that severe mental illness that included psychosis was not

merely the result of psychological problems caused by family relationships. This understanding led

to research and a number of theories on the etiology of mental illness, including genetic

predispositions (Torrey, 1983). The new theories allowed families to free themselves from feelings

of guilt and shame that were instilled by prior theoretical implications of inappropriate parenting.

This allowed family members to recognize the need for treatment, and to advocate for further

research. The same advocacy must happen for those who are dually diagnosed, through a clear

understanding of the addictive disorders. Families of the dually diagnosed continue to experience

frustration resulting from a service delivery system that does not meet their needs or the needs of

their relatives.

Traditional Family Programs

Traditional twelve step programs for family members of alcoholics, Al-Anon, often do not
meet the needs of a family whose relative also has a mental illness. Concepts such as "hitting

bottom" (Al-Anon, 1987) are not easily acceptable to families of the dually diagnosed. For a

dually diagnosed person, hitting bottom may result in decompensation into acute symptoms,

deterioration of functioning, loss of supports, and hospitalization. Families also fear the potential

dangers involved in "putting their relative out on the street," which may be construed as a

necessary action for families of addicted individuals. In MIDAA treatment clients are maintained

at their present level of stability, and progress in substance abuse treatment proceeds from there

(Sciacca, 1991). Programs such as Al-Anon evolved in response to discrete disorders--in this case,

alcoholism. They are not comprehensive and do not address mental illness or the interaction

effects of mental illness and substance disorders.

When traditional substance abuse supports and services are not sufficient, families of the

dually diagnosed rely upon the mental health system for support. Presently, there are few services

within that system to address their needs. Some Alliance for the Mentally Ill (AMI) chapters

include families of the dually diagnosed, where they usually constitute a less cohesive sub-group

compared to families who are concerned about mental illness alone. As a result, many chapters do

not provide specialized supports. When specialized supports are provided, they are in addition to

the benefits of membership to AMI. Families who belong to AMI should continue to do so.

Programs for families of the dually diagnosed are additional specialized supports, not

replacements for the broader range of benefits provided by AMI. At the national and several

statewide levels NAMI does address the issues of the dually diagnosed (Hatfield, 1992). This

includes efforts to educate all of the membership.

Development of MICAA-NON

MICAA-NON (NON being an acronym that draws parallel from Al-anon) began in 1987

(Sciacca, 1989) as an effort to educate families about mental illness, drug addiction and alcohol
dependence. It began with presentations at local Alliance for Mentally Ill (AMI) chapters. Chapter

presidents forewarned that many members were resistant toward openly discussing substance

abuse issues. As a result, educational meetings were offered as a follow up to presentations rather

than support groups. The engagement process used with dually diagnosed clients is applied here.

Participants need not disclose information about their dually diagnosed relative. Interest in

learning about the addictive disorders and interaction effects with mental illness is the only

prerequisite. The first MICAA-NON meetings included some families who were not ready to

discuss their relative's substance abuse, and other families who did so openly. Family members had

tales of isolation, disrupted lives, and uncertainty as to where to go for help. They clearly lacked a

forum to discuss these problems. Families reported having their input ignored while treatment was

administered to their relative that did not account for the substance abuse problem. Similar reports

were given by families who attended presentations at statewide AMI and national NAMI

conferences. Frequently these were initial disclosures of experiences that had long been harbored

in silence. Empirically, this confirmed the extent of the need for education and support for families

of the dually diagnosed.

Program Structure and Education

MICAA-NON meetings are usually led by professionals who have been trained to provide

MIDAA treatment services to consumers. MICAA-NON groups require the leadership of an

informed provider who can assist families to acquire services and develop networks from limited

resources. When developing programs for MICAA treatment services, some agencies extend their

services to include a MICAA-NON program. Staff members in training at such agencies learn to

lead family meetings under supervision (Sciacca, 1991). This enhances their educational

experience. Through educating and learning from families they gain insight into the broader

network and experiences of their dually diagnosed clients. They understand the family and the
client as a system and learn new ways to work together. As the plight of the family unfolds,

providers begin to let go of past theories of families as causal to mental illness (Lefley,1987).

Instead, they recognize the support families provide, often under extremely adverse conditions.

Thus far MICAA-NON groups have not been developed for profit. When a group begins

it is open to all families throughout the community. Participants need not have a client in

treatment at the sponsoring agency. Many families who do attend have the presenting problem of

a relative who either refuses, or is unable to access appropriate treatment.

Groups include multiple families. They do not usually include the dually diagnosed client.

Meetings are usually held in the evening. They are held weekly, bi-monthly or monthly as decided

by members. They last approximately one and one-half to two hours. Group size ranges from

three to twelve participants.

Outreach is very important to the formation of groups and for sustaining membership.

Programs that begin with a presentation at a local AMI chapter or other family programs start out

with a general overview of the physiological properties of mental illness, drug addiction and

alcoholism. Participants are given the opportunity to sign up to attend additional educational

meetings. They are notified of the details of each meeting in writing and by telephone the day of

the meeting. Flyers and notices are strategically sent to reach as many agencies and family

members as possible. Notices are placed in local newsletters.

New members may join at any time. Participants are encouraged to invite other families, as

well as additional members of their own family.

MICAA-NON Program Content

The content of the meetings includes both support and education. Following introductions,

participants share in an open forum of discussion. Usually, at least one member will discuss a

personal issue or problem. The leader and the group members explore the issue and attempt to
find solutions. Participants are not pressured to discuss their relative. Denial of the existence or

scope of a relative's symptoms, and resistance to open discussion, unfold gradually with the

development of trust. Non-judgmental support and education lead to understanding and open

participation as family members learn some of the causes and cures of mental illness and substance

disorders. This process parallels engagement and interventions developed for client groups.

Emphasis is placed upon understanding discrete, multiple disorders, versus seeing dual

disorders as causal. Some people believe that their relative drinks alcohol or uses drugs because

he or she is mentally ill This leads to seeking help for the mental illness alone with the expectation

that the addiction will simply clear up. Others are uncertain that their relative has a mental illness

and may perceive drinking and drug use as the cause of symptoms. Another common belief is that

drinking or drug use as a leisure activity is the best quality of life that a person with a severe

mental illness can expect. Family members are taught the necessity of treatment, support, and

relapse prevention for each disorder.

The supportive nature of the group process includes assisting each participant to consider

his or her own well being and separateness. As participants discuss their situations, leaders assist

them to consider their personal well being. Group members are encouraged to be supportive of

one another and to share their successes as well as their concerns.

Through this process, participants learn the parameters of their ability to be helpful to the

dually diagnosed. They learn to differentiate between their relative's need for appropriate services

in contrast to frustrating interactions or efforts, such as arguing, that do not have the potential for

success in changing their relative's addictive behaviors. This provides new options for families to

consider as they choose how they will expend their energy and resources in their effort to assist

their relative.

Educational Content
 Each meeting includes educational content. Media such as videos, written materials, and

guest speakers are used. Topics are addressed from many different perspectives and discussion

from each member is encouraged. Some topics are listed as follows:

The physiological aspects of the addictions, including effects upon brain chemistry;

Risk factors in mixing psychotropic medication with illicit substances;

Etiology of addictive disorders, including genetic research findings and reactive causes;

Tolerance levels and other addictive syndromes;

The parallels across addictive disorders and mental illness;

Treatment methods and recovery from addictive disorders;

Special treatment programs for the dually diagnosed, MIDAA treatment;

Interaction effects of mental illness and addictive disorders;

The impact of addictive disorders upon the family system.

It is most important for families to learn that the addictions frequently are illnesses that

require treatment. Of particular importance is the understanding of the physical addictions.

Without the knowledge that a relative is responding to a physical addiction, families and providers

frequently view substance abuse as a behavior that can be changed at will. This results in

unrealistic expectations and frustrating, disappointing inter-actions. Education about each disorder

is directed toward dispelling stigma, shame, and guilt.

Families are educated about the parameters of their ability to be helpful to the dually

diagnosed relative and when it is best to seek outside services for treatment and other kinds of

programs for various needs that they and their relatives may have. This process often enlightens

the group members about the gaps in our service delivery system for dually diagnosed clients and

emphasizes the need for special advocacy.

Assessment of Families in MICAA-NON

 Assessment of families is an ongoing process. The following are some areas that need to

be explored during initial contacts, and continually updated throughout the entire process.

First, assessment should include the readiness of the family to accept that their relative

has an addictive disorder and a mental illness and the readiness of the client to receive treatment.

Interventions and content of the meetings will assist participants to reach the next step along the

continuum of acceptance. Each of these areas parallel the process developed for client groups.

Discussions about the experiences families have in coping with or assisting their relative often

validates the educational information, and the symptoms of substance dependence. When the

dually diagnosed relative is discussed, his or her readiness to engage in treatment is determined.

Second, extreme importance is the assessment of the safety of all concerned. Interaction

effects of multiple disorders often result in suicidal behavior, violence or tendencies toward

harming others. Physical cravings for illicit substances can lead to various inappropriate behaviors

in order to obtain money to buy drugs. Violence in families of substance abusers who are not

diagnosed with a mental illness is well documented (Gorney, 1989; Gelles & Strauss, 1988). As is

true with substance abuse, people tend to minimize, rationalize, and deny violence due to stigma,

fear, and shame (Gorney, 1989). In a survey of NAMI members 38% of the sample reported that

their mentally ill relative was assaultive and destructive in the home either sometimes or frequently

(Swan & Lavitt, 1986). In a survey of AMI members in Maryland 36% of the sample reported

violence, and 59% reported suicidal ideation as acute symptoms evoked by substance abuse

(Sciacca & Hatfield, 1995). In MICAA-NON groups, the unfolding of denial about assaultive and

destructive behavior occurs in the same way that denial unfolds about other issues. In addition to

the development of trust, participants learn from the media and from one another that these

behaviors are common and symptomatic. This helps to alleviate shame and guilt. Families will then

reveal the degree of discomfort they experience when their relative is under the influence of
alcohol or drugs. Some members will describe past physical altercations or verbal threats. Leaders

must consider whether or not there is an imminent danger. If there is, crisis intervention,

hospitalization or alternative living arrangements may be recommended. Another body of

literature on aging parents as caregivers of mentally ill adult children (Lefley, 1987b) is also

representative of some family compositions of the dually diagnosed. With this family composition,

the stressors may be manifold, and dangers more imminent.

Third, assessment of a physical addiction provides important information necessary to

pursue an appropriate course of action. Questions about the dually diagnosed relatives drug(s) of

choice, frequency and quantity of use, and length of time used (Sciacca, 1990) will facilitate this

assessment. Families with physically addicted relatives come to understand the limitations of

willful change and the treatment necessary for detoxification and recovery. Education about

withdrawal effects and neurochemical and nutritional depletion are examples of information that

helps families to understand the physical addictions.

Fourth, it is important to explore the family's support network. This should include the

quality of relationships between all family members, the identification of particular family

members who provide support and caregiving, and the presence or absence of outside supports

including the relationships between the family and providers to the dually diagnosed client.

Assisting family members to increase supports for the family and the dually diagnosed relative is a

formative goal. Leaders may attempt to engage other family members to attend MICAA-NON.

Participants of MICAA-NON are encouraged to join their local AMI chapter. MICAA-NON

meetings usually include members of AMI who will assist in engaging new AMI members.

Al-Anon speakers are invited to speak at MICAA-NON meetings. They are asked to

discuss their resolutions to relationships with addicted relatives and to answer questions about Al-

Anon. Attending Al-Anon meetings can provide additional support for participants who have
learned the similarities and differences between the dually diagnosed and people with addictive

disorders alone. Participants are encouraged to communicate with those who provide treatment to

their dually diagnosed relative. This includes asking questions and discussing their concerns.

Fifth, it is important to assess the family history of addictive disorders. An assessment

developed for MIDAA clients (Sciacca, 1990) details the family history of substance abuse and

the client's history. This provides information necessary to determine the possibility of genetics

involved in the addictive disorders or reactive causes. The family dynamic of guarding information

about family substance abuse, and experiences of betrayal when revealing it, exists for dually

diagnosed clients and their families. As participants learn the symptoms of addictive disorders they

may begin to question whether or not there is substance abuse among other family members.

Educating families about genetic research in alcoholism (Goodwin, 1985) that utilize the

same paradigms, and yield the same results as genetic research in schizophrenia (Torrey, 1983), is

often easily understandable. Other parallels across mental illness and substance disorders include

treatments necessary to bring active symptoms into remission, the potential for relapse, and the

need for ongoing support for continued remission for each disorder (Sciacca, 1991). Assisting

families to recognize that for some people substance disorders may run in families, can provide

the clarity necessary to end years of misplaced blame and uncertainty.

MICAA-NON groups are on-going, they continue for as long as the resources (leader,

space, sponsoring agency) are available. As with many support groups, coming together and

alleviating the isolation caused by these problems is a healing experience in itself. Once families

can remove the stigmas attached to alcohol and drug use, they are free to explore the research and

the potential solutions to the issues

of dual disorders.

In sum, this process begins by engaging families in a process of education about issues and
dynamics. It proceeds with the development of trust and assistance necessary to move them

beyond denial, shame or guilt so that they may comfortably assess their own situation and the

situation of their dually diagnosed relative. This unfolding exploration continually provides the

leader with information that is more comprehensive. The leader can then assess areas of readiness,

safety, physical dependence, support networks, and family history, and provide important

interventions and information. Some of the benefits and outcome for families who participate

include: (a) new information, (b) education, (c) support, (d) an expanded network of resources,

(e) reduced stress, (f) peer identity, (g) attention to and/or improvement of their own well being,

(h) clarification of boundaries in relationship to their dually diagnosed relative, (i) improvement

over their own situation, and (j) improvement in their relative's situation.

Conclusion

Attention to the issues of dual diagnosis comes and goes as a priority in various states and

communities. Advocacy sometimes consists of an individual family member who persistently tries

to educate and influence entire bureaucracies, agencies, and other families (Sciacca, 1993).

Successful efforts have resulted in presentations on the topic, and, in some cases, education and

training for providers in their communities. Efforts to develop services must include assisting

families and clients to move beyond experiences of frustration and uncertainty to a stance of

informed advocacy. This transition needs to take place for program administrators and providers

across all services. Advocates for clients who are dually diagnosed must join together to form a

cohesive group and a sustained effort to achieve the success NAMI has achieved in helping those

who have a mental illness alone.

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Copyright Kathleen Sciacca Collective works.