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“Its easier for me to take him than wait for <strong>the</strong>
bus” said one assistant.
Kevin depended on <strong>the</strong> assistance from o<strong>the</strong>rs
to help him with cooking, cleaning, dressing
and accomplishing many o<strong>the</strong>r daily living
tasks. Personal assistants from community service
agencies came in and out of Kevin’s home
between 7:00 a.m. and 11:00 p.m. each day. A
two-way intercom system was installed in <strong>the</strong>
home so that Kevin’s nightly actions could be
monitored from 11:00 p.m. until 7:00 a.m.
That is, a person employed by a human service
agency monitored Kevin such that if he got
out of bed, he would be reminded via a
speaker to go back to his bedroom. Kevin
received SSI (monthly income via Social Security
Administration) and Medicaid, and because
of this, he was eligible for services from
DMH, who took care of all <strong>the</strong> housecleaning,
meal preparation, shopping, errands and
laundry. Support was also offered when it
came to bathing, dressing, and taking medication.
Work. Kevin’s jobs were mostly seasonal.
During <strong>the</strong> fall and winter seasons, he worked
at <strong>the</strong> community center doing janitorial and
maintenance work. During <strong>the</strong> spring and
summer months, he had a lawn maintenance
and moving service in which he worked 20
hours a week. Throughout <strong>the</strong> year, he was
scheduled to work at least 10 hours a week at
a restaurant, clearing landscape or shoveling
snow. The school district, in partnership with
vocational rehabilitation services, sponsored a
job coach, which Kevin and his parents interviewed
and helped hire.
School. Prior to <strong>the</strong> afternoon work schedule,
Kevin, under <strong>the</strong> supervision of his assistants,
walked to school most mornings. For a
two to three hour period at school, he worked
on daily living activities (e.g., cooking, cleaning,
recreating) in a simulated apartment, designed
in a classroom. During <strong>the</strong> blocked
time, Kevin had a semi-structured schedule
where, during each half hour to 45 minute
period, he was given a choice as to what he
would like to do. As an example, between 9
and 9:30 a.m., recreation time, he could chose
to play a card or board game. In addition to
learning games, an aim was for Kevin to fur<strong>the</strong>r
develop his social and self-determination
skills. Recreation and social interaction skills,
like o<strong>the</strong>r daily living skills, were areas noted
284 / Education and Training in Developmental Disabilities-September 2008
on Kevin’s IEP, and data were collected in an
effort to monitor his progress.
Family values - no legal guardian appointed.
Mary and Joe, both retired, visited with <strong>the</strong>ir
son regularly, at least once a week. Kevin
fished and boated with his Dad and went to
<strong>the</strong> mall and restaurants with his Mom. His
parents also stayed in close contact with
Kevin’s assistants and monitored his money.
His older bro<strong>the</strong>r by two years, Peter, did not
live in <strong>the</strong> state, however, he kept in contact
with Kevin. Two months into <strong>the</strong> study, when
<strong>the</strong> author phoned Mary to arrange an observation,
she quickly interjected:
Boy do I have something to tell you about
guardianship! We are at a ragged edge with
this guardianship thing. I just got a phone
call from <strong>the</strong> special education administrator.
He said that Kevin was in an assault
situation at school. He told me he couldn’t
tell me anything more because I was not
Kevin’s legal guardian - that because Kevin
was his own guardian, he could not disclose
any details of what occurred – He also went
on to say that Kevin would not understand a
report that detailed <strong>the</strong> situation and <strong>the</strong>refore
would not give him <strong>the</strong> report ei<strong>the</strong>r.
This person had no right to make <strong>the</strong> determination
of Kevin’s competence.
Mary volunteered regularly at a community
family advocacy organization as a consultant
to and an advocate for people with disabilities
and <strong>the</strong>ir family members with regard to special
education, community agency connections,
social security income and o<strong>the</strong>r issues,
including guardianship. Mary stated that she
wanted Kevin, her son, to remain an individual
who maintained all of his basic rights.
Through her association with <strong>the</strong> family advocacy
organization and school sponsored family
transition topic nights, she learned that she
could write a ‘letter of intent.’ A letter of
intent is a document written by parents that
describes <strong>the</strong> son’s or daughter’s history, current
status and hopes for <strong>the</strong> future
(Pierangelo & Giuliani, 2004). Although <strong>the</strong>
document is not a legal one, judges and o<strong>the</strong>r
parties can refer to <strong>the</strong> letter for guidance in
understanding <strong>the</strong> wishes of <strong>the</strong> parents in
regard to <strong>the</strong>ir son or daughter. Content areas
of <strong>the</strong> letter can vary: including religion, sib-