Re: Question of the Month-November 2006

[Guest guest]

At 26, we are " out of the loop " as far as school aides, etc. are

concerned. And Russ is too old for the respite program we used when

he was younger. Our regular respite worker was an assistant at his

adult day program and now divides her time between Russ, another

young man with autism and her own sister, who has Downs Syndrome.

We have used the adult daughter of a special ed teacher friend. We

have also used friends of my collge-aged sons, who stayed in the

area for college (they can ALWAYS use cash). We have used the

younger brother of my youngest best friend. We pay for it with

's SSI and I take a certain amount from his account every

month for respite alone. Since we are yet again " in transition " , I

have Russ 24/7, so I schedule respite several times a week. I teach

music privately, so I am able to have some time that

is " nonautistic " and it keeps me sane! At least, most weeks.

Marie

>

> The topic for the question of the month for November, 2006 is

> RESPITE.

> Where do you find respite workers, especially once your child is

no

> longer in school and surrounded by teaching assistants, peer

> mentors, and teachers. How do you pay for respite? What are the

> available funding streams, e.g.; respite programs, SSI? Are there

> any unique respite opporutnities in your community and how did

these

> get started, funded, etc...

>

> To start the conversation, I want to describe a new respite/drop

off

> program started in our geography by Glenkirk, a local provider

> agency in Northbrook. It is specifically for individuals aged 18-

> 25. Individuals can be dropped off at 5 pm and picked up at 8

pm.

> Plans vary but have included movies, bowling, miniature golf,

> outdoor carnivals, the Botanic Gardens. The staff to participant

> ratio is about 1:5. It is totally community based. The cost is

> about $160 for 5 events or about $35 per event. Glenkirk also has

a

> community center that offers open times for get togethers many

> evenings during the week that costs much less. Membership is $100

> per year. Part of the reason this was implemented was that the

> agency listened to what families said they needed.

> For those in the Brookfield geography, I am aware that CSS has a

> similar type of program that has been in existence far longer.

> Various agencies in our north suburban geography offer Respite

> Programs that entail a far amount of paper work and do not

typically

> provide respite workers. The reimbursement for workers ranges

from

> $8.50 to $10.00 with additional reimbursement for mileage and

> overnight stays. It can be a challenge to get respite workers and

> many families share the ones we find. My son is 20 so we still

have

> the advantage of knowing teachers and teaching assistants, but

that

> will be changing soon. We have been fortunate to have some very

> good respite workers and have had only a sporadic few " dry spells.

> What about the rest of you?

>