Friday, December 14, 2012

What does the State of Illinois Have to Offer My Child When He Turns 22?

As I said in my Facebook Page (, I would be writing about what I learned of what the state of Illinois has to offer our son Alex. It pretty much comes down to nothing. First of all, Illinois is the worst state to have your special needs adult child in. As you are all aware, my son, Alex, is Deaf and Autistic.

 Last month in November, my friend Jeri and I went to visit Avenues to Independence work center. This is a wonderful place that employs special needs adults in Illinois. Jeri and I were researching as to how we could start something up on our own. I was researching more for Alex's future, and Jeri because she has been a Deaf/special needs teacher for 26 years. She was recently riffed.  We have learned that there are many services through school for children with special needs from the age of 3 until the age of 22. After the special need child turns 22 years old, it is up to the parents as to what the future plan will be. Schools are done with your child and then where do you go? What do you do? What are your choices? In the state of Illinois, after your child turns 22, they don't give you enough resources as to what to do, and don't have the best interest of your child. So, it is up to the parents like me to go find the answers! When Jeri and I were asking Kathy, an employee of Avenues to Independence, some questions, we were shocked at her answers. I asked how would I be able to place Alex in a group home in Illinois in the future. Here is what she said. In order for Alex to qualify for CILA (Community  Integrated Living Arrangement), either my husband or I would need to be 80 years old or at least nearly dying! You can imagine that Jeri's and my jaw dropped to the floor! This was unbelievable. Also, some group homes have a LONG waiting list and it will be YEARS before my son will be in a group home. Not only that, but the state of Illinois keeps cutting the budget for programs for people with special needs and changing the rules as to who has developmental or cognitive disabilities. Illinois is at the BOTTOM of the United States for providing what is needed for this population. This has convinced my husband and I that we definitely need to move out of state for Alex's well being in the future. Now, a group home is not the only choice for Alex. Jeri and I recently have learned of something called a "home based community service." When your child turns 18, you can sign up for this and your name is put in a lottery. If you are picked, then the state pays a certain amount of money every month for your child's needs to live at your home. This is not a bad option, but you are not guaranteed that you will be picked, and when you the parents die, then what? You will need to have a plan in place. Do you make arrangements with the siblings? What if the siblings have their own lives and don't want to take on the responsibility of taking care of someone with a disability? What if there are no siblings? Who can you trust? We also learned that 2-4 families can get creative and buy a condo/home together and have their disabled adult child live there, and hire the staff members on their own. Again, when all the parents die, then what? You will need someone you can trust to keep this household running safely for the rest of the child's life.

Now some of you may think of a "group home" as an "institution" which is not the case. I have visited a group home through Avenues to Independence organization and they are homes within the community which is a wonderful thing! It could be apartment buildings or single family homes. The residents live in these homes and during the daytime, they go to work, whether it be at the work center, a job site within the community or they maybe possibly have their own business set up just like the rest of the people in the workforce.

Since we are not impressed with what Illinois has to offer, John, my husband, and I have decided to move to a different state in the future. We are thinking of moving to Texas in a few years and have been told a lot of wonderful things about Texas School the Deaf. I even talked to one of the parents who also has a Deaf and Autistic son and he said he and his family has been getting a lot of support from the staff there. John and I are hoping to visit this school in a couple of years. Possibly move there after our 2 oldest kids graduate from high school.

As a parent to another parent, please think about your child's long term future. Yes, there are many, many services/programs here in the state for disabled children up to the age of 22. Please think about what will happen to your child after the age of 22. Do you have a plan in place? Will your child be in good hands? I know it is a very hard thing to do but we need to be realistic. Afterall, we all don't live forever. So please do what you can for your child to be prepared for their adult years.

Here are a couple of websites about what I have talked about that maybe you can use as a resource in Illinois...

This website is information about this wonderful organization Avenues to Independence. They have been great to educate John, Jeri and I about how it all works!

Also, here are some gift ideas for kids who are on the spectrum.

At the Autism Speaks website, they have a list of toys and games good for children on the spectrum.

And finally Sensory Processing Disorders in children can make gift giving difficult. Here is a website with gift suggestions for children with Autism, Asperger’s, ADHD and Dyslexia.

Here is a small trampoline that is another great gift for your child!

Happy Holidays to everyone! 

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