Foggyrock
Beta
"When autism is your mountain, you will never have to climb alone"
Feel free to browse around and get to know Foggyrock. However, you will need to login/register in order to fully participate

FoggyRock Blog
An ironic start to Autism Awareness Month Posted By: janneane7
Posted On: 04/02/2008
Talk about irony... today, April 1st, is the 1st day of Autism Awareness Month, it’s April Fools Day and it was also Andy’s 1st ISP (individual service plan) meeting (which is a plan for adults in day programs/adult services.)

I don’t even know where to begin except it was a total shock to the system.

I KNOW, because of my work, through friend’s experiences and my own experinces over the years that IEP meetings can be difficult and even contentious, and that school systems can be difficult to deal with… still in all my experiences I don’t remember ever feeling so disheartened.

The first 3/4 of Andy's ISP meeting was fairly meaningless, at least in my book. As part of Andy’s IEP we always had to write a “vision statement” (it’s mandatory in my state) that spoke about our vision for Andy for the future. It would be a paragraph or two… fairly short simple and to the point. Today was a protracted exercise in writing something similar to a vision statement except I found little meaning in any of it. As I listened I knew (like only a parent can know) that the things we spoke of would very likely never come to fruition.

We went over things like his community membership, (going to the Y once a week with his dad…whoo boy!) his relationships (not just having paid staff in his life… yeah Like they are going to change that????) and his “residential life (what he does at home for chores ect…) None of these things will be improved or changed at his day program and it just felt like such a fat waste of time.

When we finally got to the goals and objectives Andy’s coordinator looked to the person who runs the day program and asked so what are the goals he will work on? Well I almost fell over. They are asking the program person before me? I sat stunned. The person who runs the program (who I like) said that there were 5 goals. It was then I found out that it was rare to have 5 goals, usually there are only 2 or 3.

More stunning stuff was to come when I discovered that the OT and the SP&L therapist (each come in once a month or so to do evals or make some recommendations) EACH, in slightly different worded recommendations suggested as a goal for Andy to learn to follow a visual schedule.

I felt sick.

Andy has been following a visual schedule since he was 8 years old…

At least the OT also made a sensory recommendation, BUT I especially couldn’t believe the SP& L person would make that recommendation.

The day this person evaluated Andy I had given her an extremely detailed “social communication” evaluation from an Autism expert who used the SCERTS guidelines to asses him. I SPECIFICALLY asked her to please use one of the recommendations from that evaluation because of the expertise in Autism that the evaluator had, and because I felt the NUMEROUS recommendations that had been made in the evaluation were so important.
Even worse was those of us at the meeting had just discussed in great detail how Andy had to work on his communication skills, due to how his serious difficulty with communication impacted nearly every facet of his life, but especially his behavior and also ability to interact socially with others.

I asked if I couldn’t contact the therapist to discuss other options for his communication goal. I said it was absolutely vital that he have a goal that was related to his social communication skills. BUT, I was told by the boss of the person who runs the program told “no”, we have to have another meeting with everyone present. (I suspect this is because of the complaining I have been doing about the program and they don’t trust me as far as they can throw me.)

Hooo boy another meeting!

Another disheartening thing was Andy’s work. At school he worked about 6 hours a week. I expected that due to the nice skills he had developed and because of the few nice strengths he has, that his work time would be expanded. When Andy started there, I negotiated with the dept of mental retardation for funding for 4 hours a week of a job coach for him (to be shared with another client) so Andy could do volunteer work 8 hours a week. Little did I know that 4 hours are work time, 2 hours are transportation time and 2 hours are for the job coach to do paper work.(I don’t think that there is anyway on God’s green earth that the Job coach could possibly have 2 hours a week of paperwork for Andy when he is only working 4 hours a week)

I am finally, truly, coming to understand that Adult programs are another world.

Because most adults with autism get most of their funding by Medicaid, at least in my state, no teaching of anything but “lifeskills” is allowed. Life skills meaning cooking and personal health, like exercise.

I am finally, truly, coming to understand that all of the hard work we did in the 18 and one half years Andy was in school means nothing in the adult world.

The adult world of day programs is ALL about Medicaid regulations and bureaucracy and little about what a person with developmental disabilities really needs to become more competent and more productive in the everyday world.

I have had many people tell me “you need to start your own program!” If only it was that simple. There is such a teeny tiny amount of funding now for adults that to start a program is all but impossible unless you can get a millionaire benefactor to support the program. I know this for a fact because I know someone who has been working now for over 3 years to get an adult program up and running. I spoke with her the other day hoping that the program may be running in the next year. She told maybe two years if things go well! I also know she has a benefactor and is seeking more of the very wealthy (who are concerned) because to depend on the state or federal government programs leaves you so tied up in red tape that the end result is exactly what Andy has right now.

So on the first day of Autism Awareness month I got another rude awakening into what Andy’s future looks to be…

I wish it was just a cruel April Fools joke… but I have learned too much and I am starting to see the truth.

For those of you out there whose sons and daughters are in their teens I wish you well and hope and pray that their futures will not be as bleak as Andy’s looks to me right now.

For those of you who have children in late elementary school I suggested you start to advocate now for better funding for adult services. We all know how slowly change comes, especially when you are trying to change the status quo.

For all of these children who have been diagnosed with Autism, who are growing older every day and who will completely overload the very little that is available for adults, the future will not be any better, unless we start now.
Tags:  adults
       
AIsForAutism wrote this reply on 04/02/2008
Sorry you had such a tough day! :(

carmel66 wrote this reply on 04/02/2008
Holy crap! What a rude awakening - well not really an awakening b/c it's been happening over a protracted period of time...but still - ugh. I am one of those folks who said to start your own program - and I know it's "dern near impossible". But I wonder where it starts...gets my wheels spinning and thinkin'...But you are right - we ALL need to look down the road (for some the road is long - other's it's right around the corner) and start advocating for those post school years.I'm sorry it's so hard right now.

KevinLivsDad wrote this reply on 04/02/2008
I don't know what to say. I just hope by the time Liv is 18 things will be different in a much betterway. Sounds like you are surrounded by more than your fair share of ass clowns

mercurymom wrote this reply on 04/02/2008
"the future will not be any better, unless we start now." Powerful words have never been spoken...I am deeply sorry your day was so well..typical April Fool..Thoughts and prayers...cheryl

View Reply:


Our Supporters