Disability Rights Investigation

ISABI LITY
" I
RIGHTS
. VERMONT
Investigation into the Death of an Individual While
Residing in an Emergency Respite Home in Northern
Vermont
Disability Rights Vermont
Formerly Vermont Protection & Advocacy, Inc.
141 Main Street, Suite 7
Montpelier, Vermont 05602
February 25, 2011
www.vtpa.org
DRVT is the Protection & Advocacy System/or Vermont.

Table of Contents
I. Introduction. .............. .................... ...... . ..................... 03
II. Backgroun.d. ..... ...... ... ... ... ........... .... ... ... ..................... 04
III. DRVT's Investigation................................................... 05
IV. Sequence of Events.............................................. 06
V. DRVT's Findings......... 23
1. Symptoms Preceding Death 23
2. Possible Medication Reactions 27
3. Medication Management 29
4. Training of Staff and Home Care Providers 31
5. Lack of Communication between Healthcare Providers 31
6. Punishment of Client due to Behavior 33
7. Tegretol Found in Toxicology Report from Autopsy 36
8. Post Mortem Investigations 36
VI. Conclusion & Recommendations....................................... 38
I. Introduction
This report presents the results of an investigation conducted by Disability Rights

Vermont (DRVT) into the death of an individual named John Doe on August 19,
2006 while residing in an emergency respite home in Morrisville under the
supervision of Sterling Area Services (SAS).
John Doe was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD),
Schizophrenia disorganized type, pervasive developmental disorder, conduct disorder
severe, pyromania, phonological disorder, and borderline intellectual functioning.
In April of 2006 John Doe went to live with a Home Care Provider in Eden, Vermont.
Beginning around June of 2006 until his death on August 19, John Doe began
exhibiting various symptoms that, according to his prior medical records, were not
normal for him. Those symptoms included hand tremors, decreased appetite,
incontinence, drooling, motor rigidity, needing assistance with dressing and eating,
unsteady gait, and slurred speech, among others.
On August 15,2006 John Doe left the Home Care Provider's home and went to live
at the Walden House. John Doe's Community Support Person from SAS continued
the day program there and the Home Care Provider cared for him when the
Community Support Person was not there. On August 18, 2006 John Doe was placed
in an emergency respite bed at the home of a Respite Home Provider in Morrisville.
On August 19,2006 John Doe was found unresponsive in his room and was
pronounced dead at the hospital a short time later. The Chief Medical Examiner was
not able to determine a cause of death.
At the time of his death John Doe required 24-hour supervision and was prescribed
the following medications: Topomax, Tenex, Vitamin E, Risperdal, Trileptal, Advair,
St. John's Wort, and Zocor. John Doe was seeing a psychologist and psychiatrist for
routine therapy and medication management.
II. Background
A. Disability Rights Vermont (DRVT) is a federally-funded, not-for-profit

organization mandated to investigate abuse, neglect and rights violations
effecting people with disabilities.
B. John Doe was 26 years old at the time of his death in August of 2006. He
was diagnosed with schizoaffective disorder and pervasive developmental
disorder. He was receiving services through SASe
C. Sterling Area Services, Inc. (SAS) is a private, non-profit, specialized

service agency incorporated in 1988. SAS provides individuals with
developmental disabilities supported natural family, shared living homes
and supervised living arrangements located throughout Northern and
Central Vermont, They contract with the Department of Disabilities,
Aging and Independent Living to provide services. Programs provide daily
opportunities for clients to work, learn skills, pursue interests and socialize
within the community. SAS currently provides the following services:
housing and home support, transportation, community support, respite,
case management, employment, clinical, crisis, personal care and school
contracts.
D. The Department of Disabilities, Aging and Independent Living (DAIL) is
under the Agency of Human Services. The Department provides a variety
of services to Vermonters who are over the age of 60 or who have a
disability.
E. John Doe's Community Support Staff (hereinafter referred to as

Community Support Person) was hired in 2005 by Sterling Area Services.
The Community Support Person is responsible for providing support for
clients in community settings including transportation, supervision,
personal care, emotional, medical, and physical support, social direction,
community and behavioral support.
F. John Doe went to live with a new Home Care Provider (hereinafter
referred to as Home Care Provider) in April of2006 who was under
contract with SASe He resided in Eden, VT. Pursuant to the contract, the
Home Care Provider is primarily responsible for all care of the consumer.
G. There was a Service Coordinator (hereinafter referred to as Service

Coordinator #1) for SAS who worked with John Doe daily and another
Service Coordinator (hereinafter referred to as Service Coordinator #2)
who was involved less frequently with John Doe's case. The Service
Coordinator is responsible for monitoring, support, supervision and
direction to Support Providers, which include Community Support Staff
and Shared Living Providers, on a monthly basis to ensure quality of
services and optimal communication. Service Coordinators are ultimately
responsible for overseeing and supervising the client's medical care. This
responsibility includes becoming familiar with the general medical
concerns and history of the client, preparing and updating a general
medical profile, record keeping, delegation of duties to Shared Living
Providers and Community Support Staff, coordinating medical services,
and coordinating medical trainings.
H. There was a Clinical Director for SAS (hereinafter referred to as Clinical

Director).
I. An individual provided emergency respite (hereinafter referred to as

Respite Home Provider) to John Doe in his home under the supervision of
SAS and John Doe was residing there at the time of his death. According
to SAS, this home is an "agency-owned home facility for which there are
no written qualifications or training protocols."
J. There was a nurse (hereinafter referred to as Medical Coordinator)for SAS

who was responsible for, in part, coordinating medical/nursing services as
needed including but not limited to: nursing evaluation of acute or chronic
illness, medication administration, emergency care, scheduling, and
assisting clients of SAS by attending needed medical appointments.
K. John Doe was seeing a psychiatrist (hereinafter referred to as Psychiatrist)

at the time of his death that provided medication management.
L. John Doe was seeing a psychologist (hereinafter referred to as

Psychologist) at the time of his death.
III. DRVT's Investigation
DRVT's investigation of this case included the following:

1. Review of records from Sterling Area Services.
2. Review of records from the Psychiatrist.
3. Review of autopsy findings from Chief Medical Examiner.
4. Phone call with Chief Medical Examiner.
5. Review of records from Psychologist.
6. Review of Lippincott's Nursing Drug Guide.
7. Review of policies and procedures relevant to SASe
8. Review of contract for services between SAS and DAIL.
9. Review of records from Washington County Mental Health.
10. Review of investigative report prepared by DAIL's Investigator.
11. Review of records from DAIL.
12. Review of records from Copley Hospital.
13. Review of records from Morristown Police Department.
14. Review of records from Morristown Rescue.
15. Review of records from Plainfield Health Center.
16. Review of information received from John Doe's mother and legal
guardian.
17. Review of opinion's by two consultants, Dr. Chirkovand Dr. Martin.
IV. Sequence of Events
The following excerpts are from records and notes that were made by
individuals and agencies involved in John Doe's care and placement in the
various homes where he resided and provided to DRVT during the course of
this investigation pursuant to authorizations to release information executed
by John Doe's mother and legal guardian.
5
In April of 2006 John Doe went to live with the Home Care Provider in Eden,
Vermont. John Doe was his first client. Service Coordinator #1 was the
Service Coordinator for SASe Community Support Person was the
community/work support person for SASe The Psychologist was John Doe's
therapist and the Psychiatrist provided medication management. The
Psychiatrist's April note did mention that John Doe complained of a tremor of
his left hand but that he was otherwise doing well. His weight was
approximately 235 pounds at this time.
On May 2nd the Community Support Person made the following note on the
Monthly Activities/Tracking Calendar "[John Doe] to [Psychologist] + Mom
lunch. Ex. Behavior. Mom gave O.Kfor mowingjob."
On May 9th the Community Support Person made the following note on the
lunch. Ex. Behavior. Played checkers with [Psychologist]. "
Monthly Activities/Tracking Calendar "[John Doe] got library card + took
out a book + a movie. Ex. Behavior. "
On May 23rd the Community Support Person made the following note on the
Monthly Activities/Tracking Calendar "[John Doe] threatened 1.. times to run
away when frustrated"
Monthly Activities/Tracking Calendar "[John Doe] job search Morrisville
area. Johnson dishwash lead... behavior excellent. "
- slurred speech - "tired" out ofit. Ex. Behavior. "
On June 6th [no name - same writing as the Community Support Person] made
the following note on the Monthly Activities/Tracking Calendar "[John Doe]
to [Psychologist]. [John Doe} "numb" today - reported to [Psychologist}.
NO mom visit. Ex. Beh. "
On June 7th [no name - same writing as the Community Support Person] made
the following note on the Monthly Activities/Tracking Calendar "[John Doe]
fishing all day, still numb. Not drinking or eating enough. Ex. Behavior. "
On June iz" John Doe met with the Psychiatrist who made the following note
"[John Doe], [Community Support Person, Home Care Provider, Service
Coordinator #1, and Medical Coordinator]. CC: Medication Changes.
Depakote is discontinued Topamax is increased to 100mg bid He has
responded well to these changes with increased alertness, further weight loss,
and maintenance ofbehavioral control. Hand tremor is vastly reduced
MENTAL STATUS: Alert! Good eye contact. More talkative and
participatory. No tremor. AIMS = zero. ASSESSMENT: Good behavioral
control, less tremor, and no side effects from his recent medication changes. I
would like to reduce Seroquel before attempting to reduce Risperdal... "
On June 12th an unidentified person made the following note on a sheet

labeled SES Client Notes that DRVT received in SAS records (although no
name of person writing the note, the Medical Coordinator did initial the
bottom of the page) " ... {John DoeJ stopped by today to let us know that he
had a doctors visit scheduledfor 7/19 to get a release to go to work. {John
DoeJ has been complaining ofa lot ofphysical illnesses over the past month.
Heart attach {sicJ, shaking sore hands, shortness ofbreath. I suggested he
see his physician because he didn't seem healthy enough to go out lookingfor
work. We will wait until he is cleared by his physician before we do serious
job development andjob interviews. "
On June 13th [no name - same writing as the Community Support Person]
made the following note on the Monthly Activities/Tracking Calendar "{John
Doe] to {Psychologist] Mom + Uncle ... lunch. Ex. Behavior. Very happy. "
made the following note on the Monthly Activities/Tracking Calendar "{John
Doe] told he has to work to earn cigs... Refuses to work. "
made the following note on the Monthly Activities/Tracking Calendar
"Fishing. John Doe still refusing to bait hook. 'Hands to stiff.' He used to
bait hook before... Had infantile tantrum about baiting hook. "
On June 26 th [no name - same writing as the Community Support Person]

"Morrisville. [John Doe] 'numb' sleeping a lot - slurred speech. Ex.
Behavior. "
On June 28 th [no name - same writing as the Community Support Person]

"Morrisville. [John DoeJ 'numb' again. Confused - 'shaky' - slurred speach
[sic] - comm.. intergration. "
On July 3rd the Service Coordinator #1 sent an email to the Medical

Coordinator which read " ... I was thinking about [John Doe] and how he
seems to be very sluggish during the day. Could the reduction ofhis med be
causing a side effect similar to a withdrawal symptom? If so could this pass
with time? Just a few things I am wondering about... "
rd
On July 3 the Community Support Person made the following note on the
Monthly Activities/Tracking Calendar "[John Doe]fish, swim, sleep. Very
numb, confused, I can't understand slurred speech. Ex. Behavior. "
On July io" the Psychiatrist wrote an order for John Doe's night time dose of
Seroquel to stop.
On July 11th the Community Support Person made the following note on the
Monthly Activities/Tracking Calendar "Burl. [Psychologist] excellent session.
Dr. will take him to lunch next wk if* [sicJ behaviors still"
Monthly Activities/Tracking Calendar "TId [John DoeJ no cig. break as long
as poor speech. Talking very clearly. See [Service Coordinator #1J abt $. "
On July 13th the Service Coordinator #1 completed a Service Coordinator's

Home Visit Note. The following questions were answered on this form:
Upcoming appointments: Complete physicall [sic] 7-19-06

Psychiatrist on 7-24-06
Medication sheets obtained. No
Incident reports obtained. No
Monthly progress notes. No
Next home visit: August 16, 2006
Monthly Activities/Tracking Calendar "Couldn't put on own shoes. Shaking
whimpering. Took (1) hr. - stagering [sicJ, slurred speech. Shook sandwich
apart - mess. "
On July 18th the Psychologist noted that "[Community Support Person]

reports deterioration in overallfunctioning including increased hand tremors.
Stated that [John Doe] is able to control them better ifgiven an incentive. In
session [John Doe] was less animated and generally lethargic, but responsive
to conversation ...reptd less sexual interest in general. "
On July is" the Community Support Person completed a Critical Incident

Report which read in part " ... [Psychologist] says he has had many clients on
similar drug regimens + has never see such adverse reactions. [PsychologistJ
questions if[John Doe] has been taking his meds. [Psychologist] says
tomorrow will determine that at his physical [Psychologist] said he couldn't
believe the profound change injust one week "
On July 19th John Doe had an appointment at the Plainfield Health Center
where the nurse practitioner noted that John Doe displayed tremors, ataxia,
and psychomotor slowing. She directed John Doe should "f/u [with] MD if
neuro [changes] persist, consider CT head + neuro consult." At this time
John Doe's weight was documented at 198 pounds.
On July 24 th the Medical Coordinator made the following note "Psyche Office
Visir [sic]: [John Doe], [Community Support Person, Home Care Provider,
Service Coordinator #1, Psychiatrist and Medical Coordinator}. He is doing
very well. He has some slurring ofspeech and hand shaking which he is able
to control himself Seroquel has been stopped completely. Risperidal is
presently 3mg. It will now be decreased to one halftab in the AM No other
med changes. Plan: next month. "
On July 24 th the Psychiatrist met with John Doe and made the following note
"{John Doe], [Community Support Person, Home Care Provider, Service
Coordinator #1, and Medical Coordinator}. CC: Medication Changes.
Seroquel tapered and stopped Tremor is less. He has gone 65 days without a
behavioral episode. CC: Lethargy. This comes and goes. He will appear
subdued and lethargic. But HCP reports that if he is asked if he would like a
cigarette he stands up immediately and is alert, with no tremor, and no
slurring ofspeech. MENTAL STATUS: He sits with head slumped and eyes
partly closed and appears lethargic. Yet, when he becomes interested in
something, he is entirely alert, talkative, andparticipatory. ASSESSMENT:
As his HCP describes what he believes to be the volitional nature ofhis
lethargy, [John Doe] listens with quiet smile. Good behavioral control, less
tremor, and no side effects from his recent medication changes ... "
On July 24 th the Community Support Person made the following note on the
Monthly ActivitiesITracking Calendar "Same old stuff. Worse after
[Psychiatrist] meet. Shaking to much to each donut. Said later 'I'm messing
wlyour mind. '"
On July zs" the Psychologist noted "[Community Support Person] reports

continuedprobs in overallfunctioning. He discd these as under [John Doe's]
control b/c he can animate himselfwhen confronted with his lethargy and
tremors. Discd with him that could be meds effects or physical prob, and that
he is able to mobilize additional energy when necessary, but not necessarily
entirely volitional...[Community Support Person] std that he had recently had
med review with {Psychiatrist} to address any med related effects ... "
On July zs" the Community Support Person noted that " ... [John Doe]
couldn'tfasten seat belt - extreme shaking + gargle speech. I said I'd write
him up + he'd lose privlidges {sic]. He fastened belt + agreed to speak
plainly. Did well at Mom's tho [sic] shaking + not speaking clearly. She is
quite concerned about new behavior. [John DoeJ has lost interest in [checkJ
marks. Will try to revive this important tool!"
On July 26 th the Community Support Person noted " ... Not alert...Serious
difficulty eating at noon due to gross shaking... "
On July 31st the Community Support Person noted " ... [John Doe] started the
day mumbling, head down, shaking + imediatley [sic] sat down. Said he was
exhausted + needed to lay down ...! told {John Doe] we needed to go on a
long hike to get awake + get his body working correctly. He protested
vigorously + I said I'd make a deal with him. Ifhe stopped this nonsense +
acted normally he could select his own activity or lack thereof. He agreed!
Stopped whining + all ofthe above behaviors + spoke clearly with an
excellent vocabulary. He chose to 'rest' at Eden Lake ... " Then at 11 :00 a.m.
the Community Support Person further noted [John DoeJ has now
H •••
reverted to stumbling, slow mo, but speaks plainly on cue. Shaking again.
Asked to eat his lunch @ 11:18. Took 45 mins. To eat (1) sandwich. "
2:00pm "[John Doe] acts totally druged [sicJ - 'out ofit , - skipped his cig. "
On August 1st the Community Support Person noted that "{Home Care
Provider] reports he had to completely dress [John DoeJ this AM [John
DoeJ presented very poorly; acting druged [sic]. [John DoeJ showed his
record ofgood days to {Service Coordinator #1J + got his computer back.
{Service Coordinator #1J praised {John Doe 'sJ ex. Behavior at great
length ...A big 'turn on 'for [John DoeJ was when [Service Coordinator #lJ
told him that he ... might get a raise due to {John Doe's] great improvement.
[Service Coordinator #lJ told [John Doe] we now need to work on his 'needy
behavior... ' On this same day at 12:00 p.m. the Community Support Person
noted: "[John Doe] totally 'out ofit. ' Cannot understand his speech. He
can 't clean foodfrom face ... "
On August 2nd the Psychologist noted "Continued problems with self-care ... "
On August 2nd the Psychiatrist noted "He has become 'totally dependent' for
the past week unless he is offered something that he wants. Rx: resume
Risperdal 3 mg bid"
On August 2 nd the Home Care Provider noted {John DoeJ unable to feed
H •••
himselfdo to shacking {sic] ofhands. Assisted him to finish meal. 3:30am

[John Doe] has wet the bed do[sic] to being unable to get out ofbed. Very
sorry, it wasn't his fault! He is very, very sorry. First time that I know ofthat
this has happened 4:00 {John Doe] has awakened use [sic] by, sorry, I am
sorry. He had wet himselfagain!... "
On August 2nd the Community Support Person noted "{John Doe] really
dopy! On questioningfor the r' time he says he needs help. When asked
10
what that means he said, 'My meds aren't working. I need new ones. ' Poor
day. Saw. [Psychologist] + Mom + both are concerned Trashed his lunch
shaking. "
nd
On August 2 the Home Care Provider noted " ... Bed time 9:45pm. [John
Doe] has had a bed wetting at this time ... "
rd
On August 3 the Home Care Provider noted" ... 10:46 [Service Coordinator
#lJ called changed med'sl to Risperdal Full tab in AM Was getting % tab
AM...[John Doe] hasn't askedfor even one cigarette all morning. 1:30 [John
Doe] was sitting on couch watching T. ~ when he got up and went right in his
shorts. Pee went allover the living room floor and down both ofhis legs! f..."
August 4th Telephone Order by the Psychiatrist "Increase risperidal to 3mg 2

x day. Maintain Trileptal at current dosage." Phone order taken by the
Medical Coordinator.
On August 4th the Home Care Provider made the following note "[John Doe]
had a shacky [sic] start this morning at breakfast. He ate most ofhis egg's
[sic] with fingers. [John Doe] has been very slow with speach [sic]. [John
Doe] needs to swallow his saliva more often, less wipping [sic]
needed...[John Doe] did eat better at dinner. 8:00 med's [John Doe] is very
slow taking his med's and is being very needful... "
On August 5th the Home Care Provider made the following note 12:00 a.m.
H
[John Doe] wet the bed Cleaned him up back to bed. 1:45 [John Doe] has
awakened us with his cring [sic]. Found [John Doe] halfin bed unable to
move. Assisted him back to bed. 2:35 Awake again his hands hurt. Rubbed
down hands + arm. Went back to sleep. 8:00am [John Doe] at this time is
very slow, tookfifteen min 'sfor him to take his meds. [John Doe] is taking
meds now one at a time ... "
On August 6th the Home Care Provider made the following note" ... [John
Doe] needed hands on to take med's. Askedfor a cigarette but was unable to
finish it do to being unable to hold and lift it to mouth ... "
On August 7th the Home Care Provider made the following note" ... Dinner
went well... 7:30 [John DoeJ had another accident... not good... 2:30am
awakened by his crying. [John Doe] wasface down in his pillow. Adjusted
pilow 's [sicJfor him. No bed wetting last night... "
On August 8th the Community Support Person made the following note
"[John Doe] refused to go on day prog. with me. I called [Service
Coordinator #2J... Following her instructions, I gave [John Doe] (2) choices,
stay home outside all day or go to see [Service Coordinator #2J if he wants to
talk to her. He asked if he could go with me + have a good day. He is now
11
talking clearly + is very compliant... 12:15 [John Doe] not able to open lunch
bagfor a while. 3:30 [John Doe] has slept all afternoon ... "
"[John Doe] barefoot - 'can't put his shoes + socks on. ' I told him we had
no time for this + he would have to go barefoot. He imed. put on both shoes
(no socks) + we left. When we got to [Psychologist] he was alert + talking
normally... 11:00 [Psychologist] concurs with [John Doe] doing everything
for himselfregardless ofcircumstances. 'Do nothingfor him unless a safety
issue '... 12:20 [John Doe] made a big display ofviolent shaking at lunch.
Unable to wipe hands + mouth on a napkin. (He didn't shake all morning
until lunch) ... "
On August 9th the Psychologist noted "[Community Support Person] reprts

[sic] continued deterioration including nocturnal incontinence ...Discd again
with [Community Support Person] probability that although there might be
some manipulative aspect to this behavior, there also appeared to be a real
organic process that was affecting his functioning, and that when he 'rallies'
he is likely exerting a high level ofenergy to do so ... "
On August ro" the Home Care Provider made the following note " ...6:50
[John Doe] had been in his room play [sic] with TV and so on. When he
began crying I checked on him andfound him laying across the bed with wet
pants ... "
On August 11th the Home Care Provider made the following note "[John Doe]
spent an hour in the bathroom at SASe He was unable to pull up his pants or
shorts. He was checked on several times ... assisted hands on. He is still
having trouble with speach [sic] and shaking ofhands ... "
On August 12th the Horne Care Provider made the following note "[John
Doe] is still needing a great deal ofpatients [sic]. He has taken his meds this
morning one at a time. He has to be guide [sic] to lift his head to
swallow ...2:30 [John Doe] has come outfrom his bed room with a mark on
his forehead This is the size ofa dime. Red in color. I didn't see this
happen. When asked [John Doe] said that he didn't know what happened. I
feel that [John Doe] rubbed his head on bedroomfloor do [sic] tojinding him
face down just pryer [sic] to this ... 10:30 [John Doe] is up and has wet
himself. 4:00am [John Doe] wants to be cleaned up. "
On August 13th the Home Care Provider made the following note
" ...Med's ...it's to the point ofbeing border line ofrefusal. He needs to hold
his head up to swallow them. This is hands on. Breakfast was a
refusal...during the afternoon [John Doe] has been very unsteady getting up
andjust standing around... 9:00 [John Doe] went to undress himselffor bed.
It started with the belt. I unlocked belt and[ John Doe] keep [sicJ saying no
12
no-. Come to find out he had already wet himself Crying out from 9:00 to
11:00 Crying and whining to be helped into bed and he was asking again +
again to be covered up ... "
On August 14th John Doe's mother documented that she spoke with
Psychiatrist and relayed her concerns about John Doe's condition and that she
wanted John Doe taken off the Risperdal. According to John Doe's mother
the Psychiatrist said "that he had decreased the Risperdal several weeks
earlier because Sterling had told him that John Doe was becoming helpless
and dependent, so he had increased it back to 3mg. BID ...[PsychiatristJ then
said that he was going to discontinue [John Doe's] Risperdal and start him on
Abilify. "
On August 14th the Home Care Provider made the following note" ... [John
Doe] is unable to swallow med's. Had to tilt his head backfor him to swallow
them ... "
"[John Doe] and I had a talk such as it was. He persists in acting dopy. Says
he can't dress himselfbecause ofhis hands ...He is aware ofhis environment
but pretends not to be. We discussed life in an institution + my inability to
help him when he won't communicate. He states that he will 'do better
doesn't want to lose me' but there is no attempt to make any effort. [John
Doe] states he would like another home. Is this the reasonfor this new
behavior? 11:30 [John Doe] asked to have lunch, then stated he couldn't eat
it because he would get it allover himself He has (2) pieces ofpizza + at I"
pretended he couldn't bite down to get a piece ofit. I assisted. He then made
out that he couldn't chew. He is not eating by himself + chewing well. I
explained 1 ~ feeding in a hosp. He askedfor help getting r piece out of
sandwich bag. 1 said 'no. ' He did it, + is eating... "This client is in serious
need ofpsychological help!!*"
On August 14th the Community Support Person also made the following note
"2:43 [John Doe] says again he doesn't want to lose me + wants a new home
but doesn't want to lose 'priviledges. ' [sic] He now reports 'seeing things that
aren't there. ' A skull, etc. lfind this hard to believe. Not speaking clearly.
This 'losing me' idea stems from me telling him that we aren't havingfun
anymore like we used to + he isn't letting anyone help him to help himself
So, let's go back to the other [John Doe] who did so well!! 3:21[ John Doe]
acting really 'weird. ' He may break the chair slidingforward to the ground,
trying to get up + 'stretch.' Speech really incoherent. "
On August 14th the Community Support Person made the following note on
the Monthly Activities/Tracking Calendar "Keptl.Iohn Doe] out ofpublic eye.
He is worse almost totally helpless. Didn't allow him lay down. "
13
On August 14th the Home Care Provider made the following note H ••• very
slow ...has to be asked over + over to speak clear...[John DoeJ is really
having a hard time with swallowing them. Holding his head up! Hands on is
needed...He is very quiet at this time ... 10:40 a woke ned [sic] buy [sic] the
thump [John DoeJ made fa/ling out ofbed Seemed very disoriented...Has
very little strenth [sic] to move his wate [sic] around Seem's [sic] very
helpless. 11:00 He has wet himselfagain in bed... "
On August is" the Home Care Provider made the following note " ... Still
waiting on [John Doe] to get dressed. Lot's ofcrying and help me. 8:20
refuses to take his med's. Still not getting dressed...[John Doe] is moving on
at this time. Hope he can turn himselfaround again. Good luck [John
Doe]. "
On August is" the Community Support Person made the following note
"[John Doe] taken to Walden House to live. I will day program at his new
home. [Home Care Provider] will carefor him in Walden House when I'm
not there. I will do respite when needed "
On August is" the Community Support Person made the following note on
the Monthly Activities/Tracking Calendar "[John Doe] left home for emerge
respite. Meet @ Sterling then move to Walden. "
On August 15th the Home Care Provider made the following note "[John
Doe] has had one banna [sic] for supper. Through [sic] away bagel with
grape jelly. This is not like [John Doe]. Supper is when he does his best.
[John Doe] is still very quiet. 7:45 Med's [John Doe] started with a outright
refusal to take his meds after talkingfor a while [John Doe] with assistance
took all ofhis med's ... 10:00pm ...At this time [John Doe] has rolled out ofbed
this time layingface down onjloor. Verbal commands were given to get back
in bed which he did with lots ofcrying. "
On August is" the Clinical Director made the following Brief Work
Summary note "Received an emailfrom [Service Coordinator #lJ explaining
that [John Doe] has been asked to leave his home. Went immediately to
Sterling. Met with [John DoeJ, [Community Support Person] and [Service
Coordinator #IJ as they debriefed Also spent some time observing [John
DoeJ and talking with [Community Support PersonJ about a range ofcurrent
concerns including a possible increase in symptoms oftardive dyskinesia,
possible indicators ofdepression, [John Doe's] upcoming neurology
appointment (asked [Service Coordinator #1J to attend this with [Community
Support Person]), and [John Doe 'sJ capabilities when he is doing better.
[Community Support Person] reported that [John Doe] had last seen
[Psychiatrist] a couple ofweeks previous and that he would see him again
8/28. I asked ifhe [Community Support PersonJ had conveyed to
[Psychiatrist] the changes he was observing and stressed the importance of
14
carefully doing so at forthcoming appointments. Began to review the journal

[John Doe's] staff keeps. Made plans to enable [Community Support
Person] to attend the Clinical Case Presentation scheduledfor 8/18. Later
emailed [Service Coordinator #1] regarding our need to provide support to
[John Doe's] home provider."
th
On August 16 the Clinical Director made the following Brief Work
Summary note "Had been scheduled to go with [Service Coordinator #1] on a
home visit and then later observe [John Doe] while he worked with
[Community Support Person], but these plans were canceled as [John Doe]
was in emergency respite. Continued email exchange with [Service
Coordinator #1J regarding support ofthe home provider. Attempted to call
home provider. "
On August 16th Service Coordinator #1 sent the following email to the

Medical Coordinator which read" ... [John Doe's] appointment with the
neurologist is scheduledfor 8-23-06 at 11:00 at the Plainfield health center.
As per our conversation I feel you are correct in feeling that you need to be
there. Thanks."
On August 16th the Psychologist noted Very lethargic. Continued

H
deterioration. Has been in crisis bed, and repts continued incontinence, not
eating well, continued shaking. Also evidenced a bruise on his forehead,
which he stated he receivedfrom afall...Discd again with [Community
Support Person] probable organic etiology, and he reptd that he again had
been seen recently by [Psychiatrist] to adjust meds, and that ther.e was a
neurological examination scheduled in the nearfuture to assess possible
organic problems... "
"8:30 Had tofasten [John Doe's] seat belt ...Speech is unintelligible [sic].
11:20 [Psychologist] reports a good session. 1told [Psychologist] no meet
next wk. due to neurologist appt...12:00 1 ordered [John Doe's] meal at drive
thru + moved ahead in line. [John Doe] couldn't speak understandably. 1
had ordered lemonade; he started to cry + fuss + said very clearly, '1want
rootbeer. ' 1 said to [sic] late now. He acted out + 1 warned him 3 times that
we would leave without the meal if he didn't stop. [John Doe] refused to
acknowledge. I paidfor the meal + left without meal. Stoped [sic] 10 mins.
later for my lunch + [John Doe] unfastened his seat belt no problem + tried
to get out ofthe car to run away. Aborted my lunch + drove straight home,
ariveing [sic] at 1:30. [John Doe] has refused lunch + is now eating
grapes. "
On August 16th the Home Care Provider made the following note" ... 6:49
[John Doe] has been in his room lying down. 1have asked repeatedly what
would you like for supper. I'm not hungry. Will try again later. Still statting
15
[sic] he is not hungry. 8:00 Med's [John Doe] is unable to take med's
himself. .. 8: 15 At this time he is undressingfor bed Needs help lots ofcrying
and begging. He also is trying to make a deal which is newI... "
On August 17th the Clinical Director made the following Brief Work
Summary note "Spoke with ...[Home Care Provider] to thank themfor thefine
support [Service Coordinator #1] had told me they provide to[John Doe}, to
let them know that the agency was invested in making the home situation work
for them and [John Doe}, and to offer any support that I could [Home Care
Provider} reportedfeeling more optimistic than he had been, and reported
that he was considering staying with [John Doe] through the weekend rather
than using respite. "
On August 17th John Doe's mother documented that she went to the crisis bed
in Walden to see John Doe. Just as I drove up, I saw [Service
H •••
Coordinator #2J and [Service Coordinator #lJ driving away. I was shocked
at how profoundly [John Doe] had deteriorated in two weeks... " John Doe's
mother also noted that John Doe was sobbing when he told her "I need to get
offthese meds, [want to get offthese meds.../ want my hands back." She
went on to state that "this was when [found outfrom [Home Care Provider]
that [Psychiatrist] had made no change to [John Doe's] Risperdal. "
On August 17th the Home Care Provider made the following note "6:40am
[John Doe] at this time has had a shower and is trying to get dressed 7:23
[John Doe] is having a real hard time getting dressed He is laying down
crying...[John Doe] has done very well this morning with taking med's and
breakfast... 10:20 [John Doe] and / have been playing basket ball which he is
really good at. We played ballfor halfan hour... 2:28 [John Doe's mother}
hasjust left. She had brought lunchfor [John Doe]. He has eaten well and
shown a very positive attitude ...8:00pm Med's [John Doe] is still in need of
help with med's. Still a lot better than a refusal... 6:00am we are all up and
going... 11:25 Arived [sic]
On August 18th the Home Care Provider made the following note
"... 7:00 ...[John Doe] has a hard time with clothes. 8:00am Med's [John
Doe] has taken his med's himselfgoodjob ... 11:25 arrived at office with
[John Doe}. Pryer [sic] to this, [John Doe] had wet himselfin the truck in
Wolcot [sic}. I pulled over in a rest area to find him wet. [John Doe] went to
the wood line to relive [sic] himselfand instead he layed down on the ground
in all kinds ofmess. Total refusal to get up to get into truck. He also was
going to run away. Hands on to load [John Doe] into truck. Tried several
times to get out oftruck while driving at fifty five miles an hour. [John Doe]
also was pushing me away from him while refusing to get in truck. Here at
the office [John Doe] also refussed [sic} to get out after several minutes [John
DoeJ did get outfor [Service Coordinator #2J. Hope he can turn around. "
16
John Doe's mother documented that on August 18th the Psychiatrist finally
II •••
returned my call. He said 'In relation to the Risperdal not being changed,
Sterling is slow.' When I asked him what he meant, he said he couldn't do
telephone orders ...he firmly stated that this was the protocol at Sterling and
that he would change the medicine in a week, when he returnedfrom
vacation ...After [John Doe's] death, I learned that [Psychiatrist] had gone on
vacation with no one coveringfor him. As soon as I got offthe phone, I called
Sterling and askedfor [Service Coordinator #1} and then [Service
Coordinator #2J and then [Executive DirectorJ who had all left for the
weekend I spoke with a woman ... and I told her I wanted to lodge a formal
complaint against [Psychiatrist] and that I wanted my son to be seen for work
up that day. She got in touch with [Service Coordinator #2J who called me
back and I told her the same thing and also that I also wanted a different
psychiatristfor [John Doe]. [Service Coordinator #2J was very upset about
[Psychiatrist} saying he couldn't do a telephone order at Sterling and said
'We do telephone orders all the time.' ... She called me back and said she
had gotten in touch with [Psychiatrist] and that he had agreed to decrease the
following a.m. dose ofRisperdalfor [John Doe] ... "
An August 18th Telephone Order by the Psychiatrist "[decrease] Risperdal to

1-1/2mg am keep 3mg Risperdal HS. " Phone order taken by [Service
Coordinator #2].
On August 18th the Clinical Director made the following Brief Work
Summary note "Clinical Case Presentation was plannedfor 1:00 but when I
arrived at the office that afternoon it was explained to me that [John Doe] (no
longer had a home' and [Service Coordinator #lJ and [Community Support
Person] would be tied up with getting [John Doe] settled in with [Respite
Home Provider] who would be stepping in to provide support. Agreed to
reschedule the clinical case review ASAP. "
On August 18th the Respite Home Provider made the following note "After
returning to the house [John DoeJ proceeded to get very childish through out
this evening. I did get him outdoors to play some badmitten [sicJ. He had a
shower before bed took quite a while for him insisted on having help. Shower
was about 1.5 hrs but got through it. He peed on the shower roomfloor and
was responsible for cleaning it up. Went to bed at 8:30pm. "
On August 19th the Respite Home Provider made the following note "[John
DoeJ got up at 8:30am and got himselfaround he was slow in getting dressed
but did so by himselfhe did not eat breakfast at all drank O.J. glass and is
now watching TV. "
On August 19th 9-1-1 was called. Morristown Police and Rescue received the
call at 1751 (5:51pm). John Doe was transported to the hospital and
pronounced dead at 1809 (6:09pm).
11------------------------- - - -
On August 19th the Respite Home Provider completed a Critical Incident
Report which stated "[John Doe] got up at 8:30am. Took a shower then we
had breakfast. He only ate a bite or two oftoast then he and our other
consummer {sic] sat in the living room watching T. Jt: We sat down at 12pm
and had lunch. We then went out on the back porch and chatted We came
back in the house and watched cartoons. [John Doe] asked me ifhe could go
to his room. I told him he could and I would get him for dinner because it was
cloose [sic] to that time. When I went to get [John Doe] I spoke to him 3 of 4
times. He did not respond so I went to his bed and shook him. The back ofhis
arm was cold to touch. So I turned him over. And knew at that time he had
expired I pulled him from his bed and got help we started CPR but it was to
[sicJ late. "
On August 19th the Morristown Police Department Investigation Narrative

read in part" ... It was reported to {Service Coordinator #2J that the victim
was unable to dress himselfor eat. [Service Coordinator #2] said she did
speak with the victim's therapist and it was decided to change the medication
but it would not take effect until the next day ... "
On August 20 th the Chief Medical Examiner of Vermont conducted an

autopsy on John Doe. The Final Report of Autopsy dated October 18, 2006
states the following pathological diagnosis:
"Diagnosis: L Mental retardation/schizoaffective disorder. A. No anatomic

correlates. B. Topiramate (l'opamax), oxcarbazepine and risperidone
therapeutic concentrations. C. Carbamazepine - sub therapeutic. D. See
toxicology. E. Tardive dyskinesia (anamnestic). F. Found unresponsive, face
down. Toxicology: Blood: Topiramate -8.6mcg/mL. Oxcarbazepine
positive. 10-Hydroxycarbazepine - 18 meg/mL. Carbamazepine -less than
O.2mcg/mL. Atropine - traces. Risperidone - 10 nanog/mL. 9
Hydroxyrisperidone - 36 nanog/mL. Incidental findings - caffeine. Opinion:
Cause ofdeath: Undetermined Contributory: Mental
retardation/schizoaffective disorder. Manner: Undetermined."
On August 21 st at 10:15 a.m. SAS began a series of Emergency Staff

Meetings regarding John Doe. During the first meeting [Respite Home
Provider] described events at his home Saturday - Sat on the couch with...
H •••
watching TV. He {John Doe] drankp/enty offluids and got along very well
with... He didn't seem to have difficulty breathing. He staggered when he
walked and they were afraid he 'dfall over backwards. He never stood up
straight and {Respite Home Provider] kept having to ask him to repeat
himself He got down on his hands and knees in the shower room and laid
down on the floor in his bedroom but he didn't fall down." It went on to read
t' ••• Saturday morning, [John DoeJ askedfor toast but didn't eat it however, he
always drank...ln the afternoon, [John Doe] asked ifhe could go to his room
18
so {Respite Home Provider] walked up with him. He laid down on the bed
and was up there about an hour before [Respite Home Provider] went up to
wake him for dinner. He wasface down on the bed...[John Doe] used his
inhaler in the AM and there was no wheezing. All meds were 2x per day
except the St. John's Wort. [Respite Home Provider] saw nothing behavioral
- when he asked him to put on his own pants, [John Doe] cried The officer
asked {Respite Home Provider] about a scratch. [Respite Home Provider]
made him sit for 2+ hours until he put his pants on - he was told by [Service
Coordinator #1] to make [John Doe] do it himself."
On this same date at 11:05 a.m. another note read in part " ... [Community
Support Person] said that [John Doe] got steadily worse with every
medication change... "
On this same date at 12:00 p.m. another note read in part All are guessing
H •••
that we'llfind a medical/neurological reason for his death. There was a big
concern for his loss ofappetite - he lost about 25 pounds. [Mother's]
concerns were met by Sterling on Friday night, August 18, 2006. [Service
Coordinator #1] said the downhill started noticeably with the seroquel phase
out and the start oftopomox and respiradol - he dropped - he was on
depakote but had no seizure disorder - his hands and arms were cold but its
been going onfor a while - its not new ...[Service Coordinator #2J wondered
if maybe he suffocated beingface down in the bed "
On this same date at 12:30 p.m. another note read in part " ... [Executive
Director] asked at what point he started going downhill. There was a very
noticeable change within the last 3 weeks. He wentfrom eating 3 big meals
per day to several smaller meals when the seroquel was reduced and replaced
with the respiradol ...On occasion he would get stuck on his belly and would
holler to [Home Care Provider] to come in and turn him over. Tremors were
noticedfrom the beginning and he was constantly drooling. [Home Care
ProviderJ had to remind him to clear his throat and swallow ... Their floor had
been destroyed by [John Doe]- how would they be reimbursed [Executive
DirectorJ said okay to the cost ofreplacing the carpet. "
On this same date at 1:10 p.m. another note read in part "[Executive
Director} advised that after speaking with ... physician's assistantfrom the
Health Center, [John Doe] was broughtfor an appointment by a man who
used to be a pharmaceutical sales representative [Community Support
Person} who told her that [John Doe's] actions were all behavioral but [sheJ
felt that something neurological was going on. Blood levels can't be done for
respiradoI. The class action suit surrounding seroquel has to do with patients
who have diabetes. The weight loss had been going onfor 2 months.
[Executive Director] is hearing today that [John Doe] deteriorated very fast.
After the dust settles, [Executive DirectorJ wants protocols that state what
staffand Home Providers should lookfor and not blame everything on
19
behaviors. The medication tweaking didn't make a difference. He was failing

anyway. [Service Coordinator #1J said earlier this morning that [John Doe]
had cold arms and hands. He was in very bad shape. [John Doe 'sJ Mom
talked with [Psychiatrist]. [Executive Director] would like training
coordinated and scheduled that teaches medical, neurological and
physiological issues that could be the cause before behaviors are ever
mentioned. [Medical Coordinator] mentioned that she talked with him on
Friday 8/16/06 and assured him that he was going to a nice place for respite.
Now we have to wait for the autopsy results ....NOTE: In reference to
[Medical Coordinator] talk with John Doe on Friday, August 18, 2006, [name
removedJ was in the lunch room when that happened It was just before she
left with a guardian and she sat down next to [John Doe] and did reassure
him that he would be going to a nice place with nice people. Her advice that
he should be seen if not improved or gets worse was heard but got little or no
response from the people [Service Coordinator #2, Service Coordinator #1,
Respite Home Provider] I felt should have responded [Respite Home
ProviderJ said okay andproceeded to clear the cup ofsoup and can of V-8 off
ofthe table from in front of[John Doe] and said that he obviously wasn't
going to eat it so he wasn't going to sit there and watch him drool allover the
front ofhimself. [Service Coordinator #2J and [Service Coordinator #1J
continued eating Chinese food and made no comment and gave [Medical
Coordinator1 no response ... "
On October 23, 2006 Service Coordinator #1 wrote a letter to Vermont

Division of Disability and Aging Services (DDAS) Community Development
Unit, which read in part On 10-13-06 I was informed that you would be
H
conducting a Departmental investigation into the death of[John Doe].. . As a

result ofyour investigation and the so-called administrative
review/investigation done by Sterling Area Services it was predetermined that
I was to be held responsible for the death of[John Doe]... As a result my
employment with SAS has been terminated. In light ofmy termination lfeel it
incumbent I bring into light a few facts concerning this so-called
review/investigation done by SASe 1. I was working under the direct
supervision ofthe SAP program coordinator, SAS agency nurse and
[Psychiatrist] as ordered by [Executive DirectorJ...5. [John Doe] had
received a complete physical one-month before his death and was given a
clean bill ofhealth by the Plainfield Health Center. 6. Both [Service
Coordinator #2] SAP coordinator and [Medical Coordinator] agency nurse
were fully informed of[John Doe'sJ examine as well as his recent
deteriorating condition. 7. I as well as [Medical CoordinatorJ ... was trying to
contact [PsychiatristJ to voice our concerns about [John Doe] change in
behavior. 8. [Psychiatrist] was not responding to our calls. [Service
Coordinator #2] was able to have him respond by using a threat ofcontacting
the Medical board investigator ...I was informed I would be placed on
administrative leave in order to secure another position for employment and
would be strongly encouraged to resign from SAS, or I could waitfor your
20
investigation to be completed and be terminated as a SAS employee. This as

you can imagine was very upsetting as I felt 1 was being targeted by SAS and
the Department to be the scapegoat in order to allow SAS and the Department
to be left offthe hook and give them someone to point the finger at to avoid
subsequent lawsuits. In light ofthese facts and the lack ofcontactfrom either
ofyou, I feel the Department and SAS have conspired to place the entire
blame on me for [John Doe's] death and to allow the other principles in this
case, namely the SAS nurse, SAP program coordinator, [Psychiatrist],
[Executive Director] and [John Doe's mother] to evade and avoid their
responsibilities and lack ofaction surrounding [John Doe's] death ... "
In early 2007 DAIL's investigator, a psychiatrist, completed an investigation

into the death of John Doe at the request of the Vermont Department of
Disabilities, Aging, and Independent Living (DAIL).
DAIL's Investigation Report stated "Summary ofSterling Area Services Log

Notes July 19 - August 19, 2006. These notes reveal a pattern ofalternating
severe behavioral difficulties and preferred behavior and cooperation,
alternating lethargy with drooling and seeming inability to communicate with
alertness and beingfully interactive with environment and repeated
descriptions ofrather dramatic shifts from one ofthese states to another. The
notes suggest that these dramatic shifts are a result of[John Doe's] conscious
and volitional choices to behave in a specific manner, in general either being
compliant or non-compliant with this behavioral plan ...
The autopsy finds that both the cause and manner ofdeath are
undetermined...! specifically discussed with [ChiefMedical Examiner} the
issues ofasphyxiation, toxic ingestion, and other disease processes. [Chief
Medical Examiner] indicated that there was not evidence ofany ofthese and
that the autopsyfindings were inconsistent with asphyxiation. Additionally a
full battery ofexpectable toxic agents and recreational drugs was performed
and revealed no other substances or drugs in [John Doe's] system ...
Interview with [Psychiatrist] ...He described [John Doe's mother's] concerns

about side effects from risperidone, specifically around the time of[John
Doe's] death. He believes that his decrease in the medication in July was
part ofa plan to simplify his medication regimen in order to minimize possible
side effects ofweight gain and lethargy. It is his recollection that [John Doe's
mother] had specific concerns about the resperidone at that visit. His
recollection ofthe reason for the order to increase the risperidone on
08/04/06 was a behavioral incident that occurred after the medication was
decreased Given his impending vacation and [John Doe's] long history of
treatment with this medication, he believed it more prudent to await any
changes until he returned. He believes that the order of08/18/06 to reverse
course and decrease the medication back to 1.5mg ofrisperidone occurred
21
because [John Doe's mother] had strongfeelings that the planned reduction
proceed...
The description ofthe events, behaviors and concerns raised in the days and
weeks preceding his death are tragic and without the context ofhis long
struggle with severe symptoms and disability, perhaps alarming. Any
person's decline into incontinence, inability to speak, eat, ambulate etc should
be considered a medical emergency, and a system ofcare which does not
respond to such events as such would be considered negligent at best, unless
there is a known history and context which changes the meaning ofthese
symptoms and events.
The records I reviewed describe the last months of[John Doe's] life filled
with contradictory abilities, states ofmood, success and struggle. References
were made to these contradictions being present in his life for years, not just
months ...
I do not find in the records or in my discussions with VDDAIL staffthat

interviewed members ofstaffat Sterling Area Services any suggestion of
neglect or mistreatment of[John Doe}. Neither do lfind approaches or
attitudes on the part ofthe care providers that suggest a pattern ofcare and
treatment that deviates from the community standard, which represents our
best understanding ofwhat good care is ...
I can find no single or series ofchoices or events which appear, in hindsight,

to have resulted in a potentially predictable tragic result, such as occurred
with [John Doe's} death. There do not appear to be any obvious errors of
commission or omission that appear to be significant contributors to the cause
of[John Doe's} death. Given that the medical examiner is unable to
determine a cause ofdeath to his standard, this finding could be argued to be
obvious. However, without the requirements ofa legal standard to which the
medical examiner must adhere, I do not find in a more practical or general
review ofthe events and decisions surrounding [John Doe's] death any event
or series ofevents, which I can point to and argue a "cause. " ...
Recommendations:
While I feel the following issues were in no way contributory in [John Doe's}
death, I do feel they warrant mention. While they are all specific to records
and logs kept by Sterling Area Services staff, this is not to imply that the
agency or the staffprovided care that was below standard or ofconcern in
general. However, the following issues do not represent a good standard of
documentation or practice ...
From the medication logs and my discussions with VDDAIL staffit appears
that the medication logs which record the client taking individual doses of
medication on a daily basis are not being completed as the medication is
22
taken. The standard way in which such logs are used is not consistent with
this practice. The expectation ofa reasonable and trained person in
reviewing these logs is that they are a detailed representation ofmedication
doses being taken. Completion ofthe logs days or weeks after the dates is not
accurate as memory ofthe taking ofindividual doses ofmedication by are
providers is not reliable. If medication logs are to be kept they should be
completed at the time medication doses are taken ...Completing such logs from
memory could be interpreted as a falsification ofa medical record and should
be avoided... "
DRVT found an undated and unsigned typed note in the records provided by
DAIL which read: "Hello [Service Coordinator #l] ...[name removed] said
there were a couple ofmedication mistakes that he picked up on. One mistake
was there was only one Rispiradel [sic] 3mg in the am. No PM dose in box.
The Depakote wasfor 500mg in the AM and lOOOmg in PM but there was
only one 500mg tablet in box for the evening. Will you please follow up on
this? I would like to meet with the HP's to go over SAS policies on meds
including that pre-pouring meds is not safest way to provide them ... "
The Respite Home Provider documented on the medication chart that he

provided John Doe with his 8pm doses of Topamax, St. Johns' Wort, Vitamin
E and Risperdal on August 19th •
V. DRVT's Findings
DRVT has identified the following eight areas of concern regarding the
circumstances surrounding John Doe's death:
1. Symptoms Preceding John Doe's Death

2. Possible Medication Reactions
3. Medication Management
4. Training of Staff and Home Care Providers
5. Lack of Communication between Health Care Providers
6. Punishment of Client Due to Behavior
7. Tegretol Found in Toxicology Report from Autopsy
8. Post Mortem Investigation
1. Symptoms Preceding John Doe's Death
DRVT's review of the relevant records relating to John Doe shows a serious
decline in his health in the weeks preceding his death. Everyone involved
with John Doe's case, from the home care providers to the medical providers,
were aware of the multitude of physical symptoms he was displaying in the
weeks prior to this death. Yet adequate efforts to determine the cause of the
symptoms and to obtain medical guidance on how to respond to John Doe's
behaviors were not made.
23
Staff provided medical opinions that they were neither trained nor licensed to
provide, i.e., the Community Support Person telling the doctors that John
Doe's symptoms were all behavioral and not medical. Another concern is that
the home care providers and staff were not seeking assistance when John
Doe's symptoms warranted more evaluation. If they were, there was no
documentation in the records provided by SAS that they were asking for help
and not receiving it. Both the Home Care Provider and Community Support
Person had a responsibility to care for John Doe and to make sure he was
provided with adequate medical care (see below), yet neither one documented
that they were concerned enough about his deteriorating condition to
recommend immediate evaluation by a health care professional, instead of
waiting for his scheduled appointments.
On August 9th the Community Support Person made a note that stated
" ...[Psychologist] concurs with [John Doe] doing everythingfor himself
regardless ofcircumstances. IDo nothingfor him unless a safety issue. '" Yet
on August 9th the Psychologist made the following note which appears to
contradict what the Community Support Person documented. "[Community
Support Person] reprts [sic] continued deterioration including nocturnal
incontinence ...Discd again with [Community Support Person] probability that
although there might be some manipulative aspect to this behavior, there also
appeared to be a real organic process that was affecting his functioning ... "
On August 16th the Psychologist did again document his concerns about John
Doe's condition in his notes and he did discuss with the Community Support
Person his concerns about John Doe's health. DRVT found no
documentation that the Community Support Person relayed the Psychologist's
concerns to any of John Doe's other medical providers.
Below are policies, procedures, contract requirements, and job

descriptions provided by SAS and DDAIL as they relate to the
responsibilities of designated agencies and staff with some examples of
apparent violations.
Community Support Staff Duties and Responsibilities [As listed in SAS job
descriptions received]
6) Provides support for clients in community settings including transportation,

supervision, personal care, emotional, medical, and physical support, social
direction, community, and behavioral support.
10) Follows Medical Guidelines, Guidelines to Quality Services, Restrictive

Procedure Guidelines, and regulations set forth by the Department of
Developmental and Mental Health Services.
24
John Doe's symptoms started with hand tremors and slurred speech, then
progressed to decrease in appetite, rigidity in hands, confusion, shaking,
difficulty with motor skills (couldn't dress himself, tie his shoes), inability to
feed himself, drooling, trouble moving, incontinence, difficulty swallowing,
and unsteady gait. The handwritten notes made by the Home Care Provider
and Community Support Person describe in detail the decline of John Doe's
health. However these problems were always attributed to a conscious
decision by John Doe to behave that way.
For example, on July zs" the Psychologist noted "[Community Support

Person] reports continuedprobs in overallfunctioning. He discd these as
under [John Doe's] control blc he can animate himselfwhen confronted with
his lethargy and tremors. Discd with him that could be meds effects or
physical prob, and that he is able to mobilize additional energy when
necessary, but not necessarily entirely volitional...[Community Support
Person] std that he had recently had med review with [Psychiatrist} to
address any med related effects ... "
On August 21st at 1:10 p.m. a note from a meeting at SAS read in

part "[Executive Director] advised that after speaking with ... physician's
assistant from the Health Center, [John Doe] was broughtfor an appointment
by a man who used to be a pharmaceutical sales representative [Community
Support Person] who told her that [John Doe's] actions were all behavioral
but [she] felt that something neurological was going on ... "
The Community Support Person's August 14th note that he "kept [John Doe]
out ofpublic eye. He is worse almost totally helpless. Didn't allow him lay
down" demonstrates an awareness of alarming symptoms by John Doe's
caregiver. Yet even at the point that the Community Support Person made this
note, just four days before John Doe's death, he still did not seek emergency
treatment for John Doe nor did he document that he had concerns and that he
addressed those concerns with his superiors.
Medical Coordinator Duties and Responsibilities [As listed in the SAS job
8) Coordinate medical/nursing services as needed including but not limited

to: nursing evaluation of acute or chronic illness, medication administration,
emergency care, scheduling, assisting Clients by attending needed medical
appointments.
13) Provides direct care services to Clients in emergency situation according

to the Director.
25
Service Coordinator Duties and Responsibilities [As listed in the SAS job
10) Service Coordinators shall be ultimately responsible for overseeing and

supervising the client's medical care. This responsibility includes becoming
familiar with the general medical concerns and history of the client; preparing
and up-dating a general medical profile; record keeping; delegation of duties
to Share Living Providers and Community Support Staff; coordinating
medical services; coordinating medical training. This responsibility does not
infringe on the discretion of the client and/or guardian regarding medical
decisions.
Sterling Area Services Inc. Developmental Home Agreement between [Home

Care Provider] and SAS
2a) Changes in Home Environment"...Therefore, Contractor agrees to notify

SAS of any event which may materially effect the developmental home
environment, including, but not limited to, major illness of Consumer,
Contractor, or any resident of the developmental home..."
Contractor's Duties, Responsibilities and Obligations:
1) Be ultimately responsible for all care of the Consumer, 24 hours per day,
during the term of the Agreement.
2) Provide the following services: at least three meals per day which provide
a balanced diet, laundry services, transportation, emergency services, and
general residential care activities. Contractor shall ensure that Consumer
receives any necessary assistance in performing daily activities, including,
but not limited to, eating, dressing, maintaining personal hygiene, any
preparation for participation in school, day services, and management of
personal spending money...
The Home Care Provider's August 14th note is another example ofa missed
opportunity to seek medical evaluation and treatment. The note clearly
reflects that John Doe is disoriented, incontinent, had fallen out of bed and
had little strength. However, despite these significant problems, the Home
Care Provider did not seek emergency treatment nor did he document his
concerns or any effort to alert others on John Doe's team at SAS about John
Doe's condition.
DAIL's Investigation
DRVT also questions DAIL's Investigator's characterization of John Doe's

symptoms as acceptable because of his "long struggle with severe symptoms
and disability." There was no indication in the records reviewed by DRVT
26
that John Doe had suffered with the multiple physical symptoms outlined
previously in the years leading up to his death.
From DAIL's investigative report:
The description ofthe events, behaviors and concerns raised in the days and
weeks preceding his death are tragic and without the context ofhis long
struggle with severe symptoms and disability, perhaps alarming. Any
person's decline into incontinence, inability to speak, eat, ambulate etc should
be considered a medical emergency, and a system ofcare which does not
respond to such events as such would be considered negligent at best, unless
there is a known history and context which changes the meaning ofthese
symptoms and events.
There was clear documentation about John Doe's deteriorating health in the
weeks preceding his death made by the home care providers, support staff and
even the medical providers. John Doe's condition should have been treated as
a medical emergency but instead his symptoms were attributed to his
disabilities and difficult behaviors in the past. Any reasonable person, living
with or taking care of an individual who suddenly started displaying the
symptoms that John Doe was displaying, should have sought - at the very least
-emergency room care or a phone call to the physician to relay these
continuous, serious events. DRVT could find no evidence of any related
phone calls or emergent doctor's visits in the records provided for our review.
Nor was there any evidence that any of the care providers considered doing a
physical evaluation of these symptoms. The failure to seek medical
evaluation during the last weeks of John Doe's life may have contributed to
his untimely death. Certainly it increased the suffering and indignity
experienced by John Doe in these final weeks.
2. Possible Medication Reactions
After a review of John Doe's records, DRVT remains concerned that the
interactions and effects of the variety of medications John Doe was taking at
the time of his death may not have been adequately considered in regard to his
deteriorating conditions in the period leading up to his death. Medical
consultant Dr. Marsha Martin suggested that the various medications could
have been partly responsible for some of John Doe's symptoms.
John Doe's mother was concerned that John Doe was experiencing a bad
reaction to the Risperdal. While the medication dosage was adjusted several
times over the months leading up to John Doe's death, his symptoms
remained and actually continued to worsen up until his death. John Doe was
displaying symptoms that could have been related to the use of Risperdal.
27
Risperdal (risperidone) Adverse effects: Insomnia, anxiety, agitation,

headache, somnolence, aggression, dizziness, tardive dyskinesias, nausea,
vomiting, constipation, abdominal discomfort, dry mouth, increased salvia,
orthostatic hypotension, arrhythmias, chest pain, arthralgia, back pain, fever,
neuroleptic malignant syndrome. 2002 Lippincott's Nursing Drug Guide
However, some of the other drugs that John Doe had been taking had similar
side effects. All of the following information about the side effects of the
drugs prescribed to John Doe was obtained from the 2002 Lippincott's
Nursing Drug Guide unless otherwise noted.
Trileptal (oxearbazepine) Adverse effects: Dizziness, drowsiness,

unsteadiness, disturbance of coordination, confusion, headache, fatigue, visual
hallucinations, depression with agitation, behavioral changes in children,
nausea, vomiting, gastric distress, abdominal pain, diarrhea, increased liver
enzymes, hypotension, bradycardia, tachycardia, atrial fibrillation, pulmonary
edema, pleural effusion, hypoventilation, hypoxia, dyspnea, bronchospasm.
Tenex (guanfacine) Adverse effects: Sedation, weakness, dizziness,

headache, insomnia, amnesia, confusion, depression, conjunctivitis, iritis,
vision disturbance, malaise, paresthesia, paresis, taste perversion, tinnitus,
hypokinesia, dry mouth, constipation, abdominal pain, diarrhea, dyspepsia,
dysphagia, nausea, bradycardia, palpitations, substernal pain, impotence,
libido decrease, testicular disorder, urinary incontinence.
Zocor (Simvastatin) Adverse effects: Headache, asthenia, sleep

disturbances, flatulence, abdominal pain, cramps, constipation, nausea,
dyspepsia, heartburn.
Topomax (Topiramate) Adverse effects: Ataxia, somnolence, dizziness,

nystagmus, nervousness, anxiety, tremor, speech impairment, paresthesias,
confusion, nausea, dyspepsia, anorexia, vomiting, dysmenorrheal, upper
respiratory infection, pharyngitis, sinusitis, leucopenia, fatigue, and rash.
Seroquel Adverse effects: Drowsiness, insomnia, vertigo, headache,

weakness, tremor, tardive dyskinesias, NMS, hypotension, orthostatic
hypotension, syncope.
Depakote Adverse effects: Sedation, tremor, emotional upset, depression,

psychosis, aggression, hyperactivity, behavioral deterioration, weakness,
anorexia with weight loss, life threatening pancreatitis, hepatic failure.
Advair Diskus (prescription information from manufacturer) side effects:

serious allergic reactions; increased blood pressure; a fast and irregular
heartbeat; chest pain; headache; tremor; nervousness; immune system effects
and a higher chance for infections; lower bone mineral density; eye problems
28
including glaucoma and cataracts; slowed growth in children; and throat

irritation. Black Box Warning (from lfl1'lt'.a(lrugrecall.com/advair): A
clinical study found medications containing salmeterol, like the Advair
inhaler, increased a patient's risk of suffering a serious and life threatening
asthma attach actually brought on by the medication itself...Prompted by this
clinical information, the FDA ordered the inclusion of a black box warning on
three medications containing salmeterol: The Advair inhaler and two
Serevent medications. The black box warning, the strongest the FDA orders
short of a recall, warns patients of the rare but significant risk of suffering a
fatal reaction from drugs containing salmeterol.
St. John's Wort Side effects: increased sensitivity to sunlight, anxiety, dry
mouth, dizziness, gastrointestinal symptoms, fatigue, headache, or sexual
dysfunction. l1'l1,'w.nih.gov website.
The records reviewed by DRVT did not demonstrate that John Doe's medical
care providers made efforts to ascertain whether John Doe's deterioration was
due to his medications. Given John Doe's significant medical conditions, the
multiple medications that John Doe was taking, and the similar side effects of
those medications on critical parts of John Doe's physical system, the lack of
documented analysis and discussion about the interaction of the medications
on John Doe is troubling. Significant care should have been taken to assess
the potential that medical issues, rather than behavioral, were responsible for
John Doe's problems just prior to his death. Instead, there was no evidence of
significant review or analysis of this component of John Doe's care either
before or after his death.
3. Medication Management
DAIL's investigation found that the medication administration records

appeared to have been created after the fact, Le., home care providers were not
completing them every day when medications were provided to John Doe.
Nor was Service Coordinator #1 fulfilling his responsibility by checking the
Medication Chart monthly. Despite a request by DRVT for the policies and
procedures governing the care of individuals that SAS is responsible for, SAS
only provided a copy of the Grant Award agreement which did not include
guidance specifically regarding medication management. DAIL guidelines
provided below require such written procedures. The Respite Home Provider
documented that he provided John Doe with his 8 p.m. doses of Topomax, St.
Johns' Wort, Vitamin E and Risperdal on August 19th, despite the fact that
John Doe was pronounced dead at 6:28 p.m. that day. These errors and
violations ofDAIL regulations may well have been significant factors in John
Doe's untimely death.
Department of Disabilities, Aging and Independent Living; Division of

Disability and Aging Services, Health and Wellness Guidelines March 2004:
29
Page 12: Medication Prescription & Administration, Written Procedures:

1. The DA/SSA must have written procedures that address all components of
medication administration. Procedures include the following subjects:
Medication refusal; Recording medications; Reporting medication errors;
Disposal of medication (outdated, unused, or contaminated);
Administering PRN medications; Administering medications during
different times of the day and week (e.g., during community supports,
work, respite, etc.); Proper storage of medications; Telephone orders, and
Self-medication.
Page 13: Medication Administration:

1. All medications must be administered as defined. Medication
administration sheets are required for all people who are not self
medicating. Sheets include a clear record of medication name, dosage,
time of administration and signature ofperson(s) who administered the
medication.
The lack of basic and required documentation of medication administration is

extremely concerning. John Doe's autopsy toxicology report showed that he
had a small level ofTegretol in his system. Tegretol is not a drug that had
been prescribed for John Doe. It is unclear, since John Doe was not
administering his medications himself, how the Tegretol got into his system.
What effect this additional medication had in terms of reaction with the other
anticonvulsant and anti-seizure medications he was taking is also unknown.
No other review of John Doe's death identified this anomaly.
It also appears that John Doe did not receive his morning dose of Tenex
(antihypertensive), Zocor (high cholesterol), Advair (for asthma) on August
19th, nor was there a peak flow meter reading noted for August 18'th or August
19th • Since the validity of the Medication Chart is uncertain, DRVT can not
ascertain how accurate the peak flow meter readings are that were
documented.
Furthermore, from review of the Medication Chart for Ris~rda1, there is a

note written that this medication was given until August 6 , then the box for
August 7th is blank with the following note: "d/c % Tab to Full on AM
[Service Coordinator #1J called" The Medication Chart reflects, as written,
that on August 4th, 5th , and 6th John Doe received the ~ tab AM dose (l.5mg)
and the full tab (3mg) AM dose.
Either the Medication Chart was completed incorrectly or John Doe received
double doses of the medication for three days. It is impossible to verify that
John Doe received the appropriate dosage of medications at the appropriate
times because medication administration documentation did not happen
according to the guidelines.
30
The failure to accurately and professionally document medication
administration raises important questions about the accuracy and consistency
of John Doe's medication intake.
4. Training of Staff and Home Care Providers
DRVT requested "A copy ofthe qualifications of, and training provided to,
[Respite Home Provider] for operating a crisis bed" from SASe The response
was that "[Respite Home Provider] provided services to [John Doe] from an
agency-owned home facility for which there are no written qualifications or
training protocols." DRVT believes that this level of service to individuals in
crisis should have policies and procedures in place to guide the home
provider. As of this writing DRVT has received no documentation regarding
qualifications or training relevant specifically to the Respite Home Provider.
DRVT had also requested "A copy ofthe qualifications of, and training
provided to, [Home Care Provider] for being a home provider" from SASe
The response was that "Qualification and training requirements for [Home
Care Provider] are setforth in the Developmental Home Agreement, a copy
ofwhich is enclosed" The document identified did not describe specifically
what training and qualifications the Home Care Provider had, but instead
indicated what training and qualifications a home care provider should have.
DRVT is concerned with the lack of quality assurance within the DAIL and
SAS structures. DAIL's review of this case did not identify this lack of
information on training qualifications as a concern.
5. Lack of Communication Between Health Care Providers
It is unclear why the various medical providers treating John Doe did not
communicate with each other when his condition worsened. An example of
this problem is the note by the physician's assistant at the Health Center in
Plainfield in July 2006 recommending a CT scan and follow up neurology, but
no documentation about who this was discussed with, if anyone. It is also
difficult to ascertain who actually ordered the neurology consult that was
eventually scheduled for August 23, 2006 and what triggered it being
scheduled at that time. The initial documentation appeared to be in an enlail
from the Service Coordinator # 1 to the Medical Coordinator when he
informed her of the visit and recommended that she attend the appointment
with John Doe.
It does not appear that the Psychologist and Psychiatrist ever discussed John
Doe's case, even though they were both treating him and the Psychologist had
documented concerns about John Doe's condition. An individual as
seemingly complex as John Doe, with his varying degrees of behavioral
31
difficulties, his mental illness and physical symptoms, and the amount of
medications he was taking, would reasonably require a concerted effort for
continuity of care to make sure the providers were working together to
alleviate his troubling symptoms. While John Doe's condition deteriorated,
neither the Psychiatrist nor Psychologist consulted each other but rather relied
on staff and contractors of SAS to provide information and follow through on
coordinating his care.
On July 3 rd the Service Coordinator #1 sent an email to the Medical

Coordinator stating that John Doe seemed to be very "sluggish during the
day" and he inquired as to whether it could be from the reduction of his
medication. DRVT found no email response from the Medical Coordinator in
the records provided to us for review. The Medical Coordinator was put on
notice on this date that John Doe was displaying medical symptoms, yet there
is no documentation by the Medical Coordinator as to whether she discussed
Service Coordinator #1 's concern with any of the providers handling John
Doe's care. There is no documentation by the Medical Coordinator that she
followed up with John Doe's home care providers regarding Service
Coordinator # 1's concerns.
The Medical Coordinator made no documentation in the records that she had
reviewed or was informed of the fmdings of John Doe's July 19th appointment
at The Health Center in Plainfield. According to the job description, the
Medical Coordinator was responsible for attending needed medical
appointments however it appears that the Community Support Person
routinely did this in her place. There was no mention of the recommendations
made by the Health Center that they should consider a "CT head + neuro
consult" in the July 24 th notes by the Medical Coordinator or the Psychiatrist
or the July 25 th note by the Psychologist. The Service Coordinator #1 actually
noted in a letter to DAIL after he was fired that John Doe had been given a
"clean bill ofhealth" at this office visit.
Also concerning is the fact that on August 14th, according to John Doe's
mother, the Psychiatrist stated to her that he had been notified by SAS staff
weeks earlier that John Doe was "becoming helpless and dependent ... "which
is why he changed his Risperdal prescription at that time. The Psychiatrist
made the following note on August 2: "He has become 'totally dependent'
for the past week unless he is offered something that he wants. Rx: resume
Risperdal 3mg bid" The Psychiatrist could have requested that an
appointment be scheduled for him to evaluate John Doe based on this and
other new information that he was being provided. He also could have
consulted with other medical providers to obtain additional qualified medical
information about John Doe's condition. Instead, he apparently adjusted John
Doe's Risperdal medication based on what staff was telling him.
32
Also according to John Doe's mother on this same date she asked the
Psychiatrist to take John Doe off the Risperdal, which he did not do on this
date. John Doe's mother feels that as his court appointed legal guardian she
had a right to request this change and the Psychiatrist had a duty to follow her
wishes. She stated that had she known the Psychiatrist was not going to
immediately make the medication change as requested, she would have taken
different action to make sure the medication was stopped. This is another
example of a missed opportunity for the medical providers responsible for
John Doe's care to have cooperated and communicated in order to provide
consistent, comprehensive and attentive care to him.
6. Punishment of Client Due to Behavior
DRVT found several references documented in the home care and community
support providers' written daily notes that would appear to be punitive or
threatening in nature and a violation of DAIL guidelines. Examples of
intimidating behavior include on June 14th [no name - same writing as
Community Support Person] made the following note on the "Monthly
Activities/Tracking Calendar" for John Doe "John Doe told he has to work to
earn cigs ...Refuses to work. "
"Monthly Activities/Tracking Calendar" for John Doe "Tld. John Doe no cig.
Break as long as poor speech ... "
The following DAIL guidelines are implicated:
State of Vermont, Department of Disabilities, Aging and Independent Living,

Division of Disability and Aging Services, Health and Wellness Guidelines,
March 2004:
Page 38: Tobacco Use. There is well-documented information concerning

the risks of tobacco use and exposure to second-hand smoke. Given that, the
following information applies to the use of tobacco or tobacco products:
#3. Individuals who smoke will not have their opportunity to smoke
restricted, except for the restrictions that are set by State and Federal law and
consistent with DA/SSA policies.
#4. Each DA/SSA must have a written smoking policy that is implemented
and enforced.
State ofVennont, Department of Disabilities, Aging and Independent Living,

Division of Disability and Aging Services, Behavior Support Guidelines For
Support Workers Paid With Developmental Services Funds, October 2004:
33
Page 8: Restriction of Rights (Adults Only):

"Restrictions of rights" are actions by workers paid with Developmental
Services funds which use the caregiver's authority over the individual and
interfere with an individual's autonomy, rights, activities or privacy in ways
we usually find unacceptable in consenting relationships. Autonomy means
doing what you want to do.
DRVT did request from SAS a copy of their policies and procedures which
govern the placement and care of individuals with developmental disabilities.
The response from SAS was that these policies and procedures are set forth in
the grant award agreement between SAS and the Agency of Human Services,
yet no copies of the policies and procedures were provided for review.
Examples of intimidating behavior include on July 25 th the Community

Support Person noted that "[John DoeJ couldn't fasten seat belt - extreme
shaking + gargle speech. I said I'd write him up + he'd lose privlidges
r · .7 •.. "
lSICJ
On August 8th the Community Support Person noted that "[John Doe] refused
to go on day prog. with me. I called [Service Coordinator #2J ...Following her
instructions, I gave [John DoeJ (2) choices, stay home outside all day or go to
see {Service Coordinator #2J ifhe wants to talk with her ... "
On August 14th the Community Support Person noted that "[John Doe] and I
had a talk such as it was. He persists in acting dopy... We discussed life in an
institution + my inability to help him when he won't communicate ...He is not
eating by himself + chewing well. I explained 1 V. feeding in a hosp ... "
These statements appear to have been intimidating and threatening in the

manner in which they were used. The Community Support Person appears to
have violated the Behavior Support Guidelines as established by DAIL by
threatening to write John Doe up which would result in a loss of privileges, by
threatening to make him stay outside all day long, by discussing life in an
institution and intravenous feeding in a hospital with him when he was having
difficulty eating by himself.
Specifically, the following DAIL guidelines are implicated:

Page 21 Part 3: Prohibited Practices (Adults and Children). The use or

application of the following practices is not permitted for any purpose by
workers paid with Developmental Services funds. Their use may constitute
abuse, and as such may be prohibited by state law.
34
c. Psychological/verbal abuse: The use of verbal or nonverbal

expressions in any form that exposes the individual to ridicule,
scorn, intimidation, denigration, devaluation, or dehumanization.
Threateninga person with loss of his or her home is considered
psychological abuse.
Examples of denial of basic needs include on August 14th Community Support

Person noted that "Kept [John Doe] out ofpublic eye. He is worse almost
totally helpless. Didn't allow him lay down. "
On August 16th the Community Support Person noted the following:

12:00 ] ordered [John Doe's] meal at drive thru + moved ahead in line.
H •••
[John Doe] couldn't speak understandably. ] had ordered lemonade; he

started to cry + fuss + said very clearly, 'I want rootbeer. ' ] said to [sic] late
now. He acted out + ] warned him 3 times that we would leave without the
meal ifhe didn't stop. [John Doe] refused to acknowledge. I paidfor the
meal + left without meal. Stoped [sic] 10 mins. later for my lunch ... "
Specifically,the following DAIL guidelines are implicated:

Page 21: Part 3: Prohibited Practices (Adults and Children). The use or
application of the following practices is not permitted for any purpose by
workers paid with Developmental Services funds. Their use may constitute
abuse, and as such may be prohibited by state law.
E. Denial of Basic Needs: Denial of sleep, shelter, bedding,

or access to bathroom facilities not associated with
prescribed medical treatment (e.g., sleep deprived EEG) or
withholding food or drink which is part of a nutritionally
adequate diet not associated with prescribed medical
treatment (e.g., fasting before a medical procedure).
Arguably the above-referenced communications with John Doe were

inappropriateand contrary to DAIL guidelines. John Doe had a right to be
treated with dignity and to not be punished because the Community Support
Person or other staff was tired of his behavior or felt that John Doe was faking
his symptoms.
35
7. Tegretol Found in Toxicology Report from Autopsy
On August 20, 2006 the Chief Medical Examiner conducted an autopsy on

John Doe's body which included toxicology fmdings. Carbamazepine
(Tegretol), an anticonvulsant, was found in John Doe's system. This is
significant because John Doe was not prescribed Tegretol. In a recent
telephone call with the Chief Medical Examiner he stated his opinion that
most likely there was in fact some amount of TegretoI in John Doe's system if
Tegretol was noted in the toxicology fmdings, even in a small amount. He
also stated there is a remote chance the findings could have been a false
positive.
The Morristown Police Department did secure the medication lock box at the
Respite Home Provider's home after John Doe's death. The drug list that was
prepared of the contents of that box does not reveal any Tegretol.
Given the earlier documented problems with the Medication Charts DRVT
remains extremely concerned with this fmding. No other reviewing agency
identified finding this drug in John Doe's system as a concern.
8. Post Mortem Investigations
DRVT consulted Alexander Chirkov, MD, Ph.D. and asked him to review
records related to John Doe's case. Dr. Chirkov asserts that more testing at
the time of autopsy could have been done to assist in finding a cause of death.
Dr. Chirkov's conclusion:
"Based on my education, training and review ofmedical records it is my

opinion to reasonable degree ofmedical certainty that cause ofdeath of[John
DoeJ... who died on August 19... can not be established without additional
examination. The following examinations and investigations might be helpful
in this case:
Additional investigation such as neuropath morphological study ofthe brain;

toxicological analysis ofhead and peripheral blood and bile, as well as liver
and brain tissue; electrolyte study ofvitreous fluid; clarification of
discrepancies in description ofdegree ofsymptoms between psychiatrist's
notes and caretaker and nurse notes; clarification (explanation) of
Medication choices (overload with antiepileptic medication on the patient
with no epilepsy) ... "
DRVT also consulted with Dr. Marsha Martin who provided the following
comments regarding John Doe's case:
36
" ...Not taking [John Doe's] symptoms seriously is perhaps the gravest error
that was made. [DAIL 's Investigator] wrote this in his report - 'Any
person's decline into incontinence, inability to speak, eat, ambulate, etc.
should be considered a medical emergency, and a system ofcare which does
not respond to such events would be considered negligent at best, unless there
is known history and context which changes the meaning ofthese symptoms
and events. ' I would say that these symptoms should be considered an
emergency first and psychological later. Thus, further response to these
symptoms should have been taken. "
Dr. Martin made the following observations of things that the Psychiatrist
should have done with regard to John Doe:
1. UHe should have recognized that topamax was the newest medication
[John Doe] was started on and that this could be the cause ofsymptoms
[John Doe] was having...
2. Taken a better history ofthe symptoms andput that in his notes. He could
see right in front ofhim that [John Doe] was experiencing some
symptoms. He should have stopped right then and gotten a complete
history from whoever was available - [John Doe's] health care providers
or his mother.
3. When the mother called [the Psychiatrist] should have taken [John Doe's]
medical problems more seriously and not assumed they were behavioral.
When the family complains about what is happening to a family member
it is a redflagfor a physician to do a thorough and second evaluation.
4. It should be clear who is on call for [the Psychiatrist] when he is on

vacation and how a patient would get ahold ofthe person on call. "
Dr. Martin also made the following observations of things that the physician's
assistant at the Plainfield Health Center should have done:
1. "She saw that [John Doe] was having neurological changes - she found
this on the physician exam. With [John Doe's] symptoms oflethargy,
weakness, somnolence, incontinence, poor appetite, weight loss - she
should have taken charge offinding out what was wrong. If the labs came
back normal, she needed to make sure that more tests were ordered
2. She said that she would refer patient to a physician ifsymptoms continued.
In my opinion she should have referred [John Doe] immediately to a
physician or at least seen [John Doe] back in the office within a week.
3. She should have taken a history (a description ofsymptoms and how long
they have occurred, what brings them on, etc.) from the patient andfamily.
37
There is no history in the chart. Over50-60% ofillnesses are diagnosed

from the historyalone.
4. She shouldhavecheckedmagnesium since that had beenon the low side

in thepast...
5. Because [John Doe]had some real medical symptoms - the PA should

havehad himfollow up with her again in a weekor so. This would have
providedcontinuity ofcare- she could have reviewed his chartand she
mighthave orderedmore tests... "
VI. Conclusion & Recommendations
John Doe relied upon many supports and services at the end of his life. Our
investigation has identified many areas of concern that may have had an
impact on John Doe's untimely death. However, as with the other reviewers
of this situation, DRVT with the help of medical consultants was unable to
determine a single negligent act that caused his death. Instead, this report
identifies many problems, omissions and errors with the services provided
that, while not clearly causing John Doe's death certainly had a negative
impact on him at the end of his life.
DRVT is concerned that the medical professionals who reviewed John Doe's
case concluded that his death was possibly a natural and expected
consequence of his disabilities. While no single cause of death was identified
in our report, we did not find any evidence to indicate that John Doe's
disabilities, properly monitored and treated, would have resulted in his death
at the age of 26. Professionals reviewing untimely deaths of such individuals
should be reluctant to find such deaths are the natural consequence of
disability rather than seeking more detailed and exhaustive evaluations when
the cause of death eludes immediate identification.
DRVT believes that DAIL should focus attention on implementing procedures

for service providers such as SAS that will attain adequate training for
contracted providers, home care providers and agency staff on what
constitutes a medical emergency and on how not to arbitrarily attribute
unusual or difficult behaviors to someone's disability.
Training also needs to be provided on the documentation requirements for

medication administration. Failure to appropriately document medications is
a serious violation of agency procedure and leaves the door open for
medication errors to occur. Based on our review ofDAIL's investigation,
attention and quality assurance is lacking in this area.
It was documented at least twice in the weeks prior to John Doe's death that
he was "refusing" to take his medication. John Doe was perhaps refusing
38
because he knew he was not well. The first time he said this was to the
Community Support Person. The second time was with his mother who did
attempt in vain to adhere to John Doe's wishes. John Doe's efforts to refuse
medications should serve as a poignant reminder that staff and home care
providers need to actively listen to and engage with the people entrusted to
their care and not just make a note in the log book, which mayor may not be
reviewed by someone with the necessary training and authority to
appropriately intervene.
While there is little doubt that the home care providers and staff involved in
John Doe's life cared for him, the manner in which the notes were written at
times seemed very demeaning. The severity of John Doe's disabilities was lost
in the need to document his "difficult" behavior and his "choice" to act that
way. Equally disturbing were the notes that reflected punitive, threatening or
intimidating statements. As outlined earlier in this report, some of those
statements - per DAIL's guidelines - could be considered abuse.
DRVT would strongly encourage DAIL to utilize a more comprehensive

system for investigating deaths when they occur. DAIL's investigation lacked
a thorough and objective review of policies, procedures and guidelines related
to John Doe's case and the agency in general.
John Doe's medical providers in the community should have been more
diligent with regard to investigating John Doe's symptoms and in following
up with him in a timely manner to assure that his symptoms were abating and
not getting worse. As identified by DRVT's medical consultant Dr. Martin,
not taking John Doe's symptoms seriously is perhaps the gravest error that
was made.
While DRVT's investigation does not give closure to the question of what
ultimately caused John Doe's death, it is clear that the system did not protect
John Doe. There were many chances for intervention by all the individuals
involved in his care. The serious decline in his health and daily functioning
the weeks prior to his death was alarming. Adherence to policies, appropriate
communication and cooperation among service providers, and appropriate
attention to potentially critical medical conditions all could have been
employed to more effectively address the crisis that John Doe underwent prior
to his death. DRVT is hopeful that the concerns raised in this report will be
adequately addressed by DAIL and SAS so as to provide the best possible
services to the future clients of both agencies.
39

Disability Rights Investigation

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Disability Rights Investigation

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ISABI LITY

Investigation into the Death of an Individual While

Residing in an Emergency Respite Home in Northern

Disability Rights Vermont

Formerly Vermont Protection & Advocacy, Inc.

141 Main Street, Suite 7

Montpelier, Vermont 05602

February 25, 2011

DRVT is the Protection & Advocacy System/or Vermont.

I. Introduction. .............. .................... ...... . ..................... 03

III. DRVT's Investigation................................................... 05

IV. Sequence of Events.............................................. 06

1. Symptoms Preceding Death 23

2. Possible Medication Reactions 27

4. Training of Staff and Home Care Providers 31

5. Lack of Communication between Healthcare Providers 31

6. Punishment of Client due to Behavior 33

7. Tegretol Found in Toxicology Report from Autopsy 36

8. Post Mortem Investigations 36

VI. Conclusion & Recommendations....................................... 38

This report presents the results of an investigation conducted by Disability Rights

A. Disability Rights Vermont (DRVT) is a federally-funded, not-for-profit

C. Sterling Area Services, Inc. (SAS) is a private, non-profit, specialized

E. John Doe's Community Support Staff (hereinafter referred to as

G. There was a Service Coordinator (hereinafter referred to as Service

H. There was a Clinical Director for SAS (hereinafter referred to as Clinical

I. An individual provided emergency respite (hereinafter referred to as

J. There was a nurse (hereinafter referred to as Medical Coordinator)for SAS

K. John Doe was seeing a psychiatrist (hereinafter referred to as Psychiatrist)

L. John Doe was seeing a psychologist (hereinafter referred to as

DRVT's investigation of this case included the following:

IV. Sequence of Events

On June 12th an unidentified person made the following note on a sheet

On June 26 th [no name - same writing as the Community Support Person]

On June 28 th [no name - same writing as the Community Support Person]

On July 3rd the Service Coordinator #1 sent an email to the Medical

On July 13th the Service Coordinator #1 completed a Service Coordinator's

Upcoming appointments: Complete physicall [sic] 7-19-06

On July 18th the Psychologist noted that "[Community Support Person]

On July is" the Community Support Person completed a Critical Incident

On July zs" the Psychologist noted "[Community Support Person] reports

himselfdo to shacking {sic] ofhands. Assisted him to finish meal. 3:30am

August 4th Telephone Order by the Psychiatrist "Increase risperidal to 3mg 2

On August 9th the Psychologist noted "[Community Support Person] reprts

again to be covered up ... "

carefully doing so at forthcoming appointments. Began to review the journal

On August 16th Service Coordinator #1 sent the following email to the

On August 16th the Psychologist noted Very lethargic. Continued

An August 18th Telephone Order by the Psychiatrist "[decrease] Risperdal to

On August 19th the Morristown Police Department Investigation Narrative

On August 20 th the Chief Medical Examiner of Vermont conducted an

"Diagnosis: L Mental retardation/schizoaffective disorder. A. No anatomic

On August 21 st at 10:15 a.m. SAS began a series of Emergency Staff

behaviors. The medication tweaking didn't make a difference. He was failing

On October 23, 2006 Service Coordinator #1 wrote a letter to Vermont

conducting a Departmental investigation into the death of[John Doe].. . As a

investigation to be completed and be terminated as a SAS employee. This as

In early 2007 DAIL's investigator, a psychiatrist, completed an investigation

DAIL's Investigation Report stated "Summary ofSterling Area Services Log

Interview with [Psychiatrist] ...He described [John Doe's mother's] concerns

I do not find in the records or in my discussions with VDDAIL staffthat

I can find no single or series ofchoices or events which appear, in hindsight,

The Respite Home Provider documented on the medication chart that he