What adults with autism need

[Guest guest]

For one thing, in Texas they need access to HCS or CLASS. So many are

languishing on these long waiting lists. That is why I am championing a waiver

for persons, especially adults, with autism. This is not a unique idea because

I have run across at least two states who have been successful in doing just

that. They have put autism as a real priority! If you all are interested then I

will be glad to send you all some links to information. Also, we need to use a

functional criteria in determining who is eligible. That way some of our

Asperger persons and those with related conditions would qualify.

We need to develop housing options for persons with autism that are not just

group homes or foster homes. I have been able to obtain Section 8 for my son

who is in HCS too, so Section 8 cuts down on the cost of his apartment. I don't

know anyone else in the state that does that regarding autism. My son signs his

own checks, with help, from the checkbook the he and I share. He has signed his

own lease so the apartment is HIS. If the care provider decides to leave then

the apartment belongs to my son. By the way, the current care provider has been

with my son for 13 years now. He gets paid very well by HCS. However, if he

shares the rent with my son then my son has to count it as income and might thus

lose Section 8. So his provider doesn't pay rent. The provider is paid very

well...both by HCS and free rent. With the work the provider does for my son he

deserves even more than he receives. Also, the way it works, the provider can

come and go during the daytime while my son is away so he has time to see his

children by a previous marriage and help at their school.

Another thing adults need is real work or things to do with a possibility of

learning during the daytime. These individuals don't need daycares where they

sit and sit with nothing to do and eagerly wait for transportation home. My son

lives for his long bus ride home. It's terrible! HCS is supposed to provide

teaching and training but there are few such opportunities.

Adults who live in their own apartment with HCS and have guardians like myself

who have to handle balancing the books and filling out the paperwork should have

access to a fiscal intermediary (someone to help with the finances.) We need

self-determination, choice and money following the person. I want to create a

living arrangement that will survive me when I am no longer on this earth. I

want what is called a microboard

http://www.communityworks.info/articles/microboard.htm which is a one

person HCS (or CLASS) agency with a board of directors of friends and family,

and advisory board of professionals like doctors, educators, music therapists

etc. And an association so we can have a place to choose who we want for a case

manager, how training is to be done, how we are going to secure insurance for

the individuals and staff and have a choice of other services for staff and

individuals.

Right now Texas is focusing on helping people transition out of nursing homes

and ICFMR, large institutional settings. We need to get them to focus on a

broader base, especially on adults with autism who have been so forgotten that I

have been asked, " Do adults with autism exist or are they all dead? " " Where are

they? " " We never see them or hear about them. "

Adults need choices so they can decide what they want to do and where they will

go. They do desperately need a real life!

Martha

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