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“Its easier for me to take him than wait for <str<strong>on</strong>g>the</str<strong>on</strong>g><br />
bus” said <strong>on</strong>e assistant.<br />
Kevin depended <strong>on</strong> <str<strong>on</strong>g>the</str<strong>on</strong>g> assistance from o<str<strong>on</strong>g>the</str<strong>on</strong>g>rs<br />
to help him with cooking, cleaning, dressing<br />
<strong>and</strong> accomplishing many o<str<strong>on</strong>g>the</str<strong>on</strong>g>r daily living<br />
tasks. Pers<strong>on</strong>al assistants from community service<br />
agencies came in <strong>and</strong> out of Kevin’s home<br />
between 7:00 a.m. <strong>and</strong> 11:00 p.m. each day. A<br />
two-way intercom system was installed in <str<strong>on</strong>g>the</str<strong>on</strong>g><br />
home so that Kevin’s nightly acti<strong>on</strong>s could be<br />
m<strong>on</strong>itored from 11:00 p.m. until 7:00 a.m.<br />
That is, a pers<strong>on</strong> employed by a human service<br />
agency m<strong>on</strong>itored Kevin such that if he got<br />
out of bed, he would be reminded via a<br />
speaker to go back to his bedroom. Kevin<br />
received SSI (m<strong>on</strong>thly income via Social Security<br />
Administrati<strong>on</strong>) <strong>and</strong> Medicaid, <strong>and</strong> because<br />
of this, he was eligible for services from<br />
DMH, who took care of all <str<strong>on</strong>g>the</str<strong>on</strong>g> housecleaning,<br />
meal preparati<strong>on</strong>, shopping, err<strong>and</strong>s <strong>and</strong><br />
laundry. Support was also offered when it<br />
came to bathing, dressing, <strong>and</strong> taking medicati<strong>on</strong>.<br />
Work. Kevin’s jobs were mostly seas<strong>on</strong>al.<br />
During <str<strong>on</strong>g>the</str<strong>on</strong>g> fall <strong>and</strong> winter seas<strong>on</strong>s, he worked<br />
at <str<strong>on</strong>g>the</str<strong>on</strong>g> community center doing janitorial <strong>and</strong><br />
maintenance work. During <str<strong>on</strong>g>the</str<strong>on</strong>g> spring <strong>and</strong><br />
summer m<strong>on</strong>ths, he had a lawn maintenance<br />
<strong>and</strong> moving service in which he worked 20<br />
hours a week. Throughout <str<strong>on</strong>g>the</str<strong>on</strong>g> year, he was<br />
scheduled to work at least 10 hours a week at<br />
a restaurant, clearing l<strong>and</strong>scape or shoveling<br />
snow. The school district, in partnership with<br />
vocati<strong>on</strong>al rehabilitati<strong>on</strong> services, sp<strong>on</strong>sored a<br />
job coach, which Kevin <strong>and</strong> his parents interviewed<br />
<strong>and</strong> helped hire.<br />
School. Prior to <str<strong>on</strong>g>the</str<strong>on</strong>g> afterno<strong>on</strong> work schedule,<br />
Kevin, under <str<strong>on</strong>g>the</str<strong>on</strong>g> supervisi<strong>on</strong> of his assistants,<br />
walked to school most mornings. For a<br />
two to three hour period at school, he worked<br />
<strong>on</strong> daily living activities (e.g., cooking, cleaning,<br />
recreating) in a simulated apartment, designed<br />
in a classroom. During <str<strong>on</strong>g>the</str<strong>on</strong>g> blocked<br />
time, Kevin had a semi-structured schedule<br />
where, during each half hour to 45 minute<br />
period, he was given a choice as to what he<br />
would like to do. As an example, between 9<br />
<strong>and</strong> 9:30 a.m., recreati<strong>on</strong> time, he could chose<br />
to play a card or board game. In additi<strong>on</strong> to<br />
learning games, an aim was for Kevin to fur<str<strong>on</strong>g>the</str<strong>on</strong>g>r<br />
develop his social <strong>and</strong> self-determinati<strong>on</strong><br />
skills. Recreati<strong>on</strong> <strong>and</strong> social interacti<strong>on</strong> skills,<br />
like o<str<strong>on</strong>g>the</str<strong>on</strong>g>r daily living skills, were areas noted<br />
284 / Educati<strong>on</strong> <strong>and</strong> Training in Developmental Disabilities-September 2008<br />
<strong>on</strong> Kevin’s IEP, <strong>and</strong> data were collected in an<br />
effort to m<strong>on</strong>itor his progress.<br />
Family values - no legal guardian appointed.<br />
Mary <strong>and</strong> Joe, both retired, visited with <str<strong>on</strong>g>the</str<strong>on</strong>g>ir<br />
s<strong>on</strong> regularly, at least <strong>on</strong>ce a week. Kevin<br />
fished <strong>and</strong> boated with his Dad <strong>and</strong> went to<br />
<str<strong>on</strong>g>the</str<strong>on</strong>g> mall <strong>and</strong> restaurants with his Mom. His<br />
parents also stayed in close c<strong>on</strong>tact with<br />
Kevin’s assistants <strong>and</strong> m<strong>on</strong>itored his m<strong>on</strong>ey.<br />
His older bro<str<strong>on</strong>g>the</str<strong>on</strong>g>r by two years, Peter, did not<br />
live in <str<strong>on</strong>g>the</str<strong>on</strong>g> state, however, he kept in c<strong>on</strong>tact<br />
with Kevin. Two m<strong>on</strong>ths into <str<strong>on</strong>g>the</str<strong>on</strong>g> study, when<br />
<str<strong>on</strong>g>the</str<strong>on</strong>g> author ph<strong>on</strong>ed Mary to arrange an observati<strong>on</strong>,<br />
she quickly interjected:<br />
Boy do I have something to tell you about<br />
guardianship! We are at a ragged edge with<br />
this guardianship thing. I just got a ph<strong>on</strong>e<br />
call from <str<strong>on</strong>g>the</str<strong>on</strong>g> special educati<strong>on</strong> administrator.<br />
He said that Kevin was in an assault<br />
situati<strong>on</strong> at school. He told me he couldn’t<br />
tell me anything more because I was not<br />
Kevin’s legal guardian - that because Kevin<br />
was his own guardian, he could not disclose<br />
any details of what occurred – He also went<br />
<strong>on</strong> to say that Kevin would not underst<strong>and</strong> a<br />
report that detailed <str<strong>on</strong>g>the</str<strong>on</strong>g> situati<strong>on</strong> <strong>and</strong> <str<strong>on</strong>g>the</str<strong>on</strong>g>refore<br />
would not give him <str<strong>on</strong>g>the</str<strong>on</strong>g> report ei<str<strong>on</strong>g>the</str<strong>on</strong>g>r.<br />
This pers<strong>on</strong> had no right to make <str<strong>on</strong>g>the</str<strong>on</strong>g> determinati<strong>on</strong><br />
of Kevin’s competence.<br />
Mary volunteered regularly at a community<br />
family advocacy organizati<strong>on</strong> as a c<strong>on</strong>sultant<br />
to <strong>and</strong> an advocate for people with disabilities<br />
<strong>and</strong> <str<strong>on</strong>g>the</str<strong>on</strong>g>ir family members with regard to special<br />
educati<strong>on</strong>, community agency c<strong>on</strong>necti<strong>on</strong>s,<br />
social security income <strong>and</strong> o<str<strong>on</strong>g>the</str<strong>on</strong>g>r issues,<br />
including guardianship. Mary stated that she<br />
wanted Kevin, her s<strong>on</strong>, to remain an individual<br />
who maintained all of his basic rights.<br />
Through her associati<strong>on</strong> with <str<strong>on</strong>g>the</str<strong>on</strong>g> family advocacy<br />
organizati<strong>on</strong> <strong>and</strong> school sp<strong>on</strong>sored family<br />
transiti<strong>on</strong> topic nights, she learned that she<br />
could write a ‘letter of intent.’ A letter of<br />
intent is a document written by parents that<br />
describes <str<strong>on</strong>g>the</str<strong>on</strong>g> s<strong>on</strong>’s or daughter’s history, current<br />
status <strong>and</strong> hopes for <str<strong>on</strong>g>the</str<strong>on</strong>g> future<br />
(Pierangelo & Giuliani, 2004). Although <str<strong>on</strong>g>the</str<strong>on</strong>g><br />
document is not a legal <strong>on</strong>e, judges <strong>and</strong> o<str<strong>on</strong>g>the</str<strong>on</strong>g>r<br />
parties can refer to <str<strong>on</strong>g>the</str<strong>on</strong>g> letter for guidance in<br />
underst<strong>and</strong>ing <str<strong>on</strong>g>the</str<strong>on</strong>g> wishes of <str<strong>on</strong>g>the</str<strong>on</strong>g> parents in<br />
regard to <str<strong>on</strong>g>the</str<strong>on</strong>g>ir s<strong>on</strong> or daughter. C<strong>on</strong>tent areas<br />
of <str<strong>on</strong>g>the</str<strong>on</strong>g> letter can vary: including religi<strong>on</strong>, sib-