Dayna will be 16 in May…..wow! We found out Dayna was autistic very early, so to think we have been on this journey for 14 years, and that she will be turning 16 years old is amazing to us. But it’s also a scary countdown. In 5 more years, Dayna will no longer be part of the educational system. That doesn’t just mean she will be out of school, but she will lose all of the services we have been getting as well. And we get more than a lot of people….let me explain what happens here in Maryland. Its good for some and bad for many others at the same time.
Dayna was diagnosed in 2002. Just before she was diagnosed, Maryland created the Autism Waiver, a Medicaid program for children with autism. It provides things like home therapy, family training, health insurance and home modifications for families with autistic children. It’s a wonderful program, but there was a hitch….there weren’t nearly enough spaces on the waiver to support everyone. In 2001 there were 250 spaces open. It increased to 300 in 2002 and 350 in 2003. We applied as soon as we found out and ended up on the waiting list. In 2004, it was increased to 900 openings and we made it in. It was 2005 when we started to actually receive services, at which point we were over $28,000 in debt to various agencies. Candidly, it would have been higher but we would skip payments on the house and cars to keep the bills down for Dayna fearing services would end. That’s reality for everyone not on the waiver.
Point is, in 1999 there were 2,304 children between the ages 3 and 21 with autism in Maryland. By 2014, there were 10,211. We were lucky to get on the waiver program when we did. As of today, there are only 1000 of the 10,000+ children with autism receiving services on the waiver, and close to 4,000 waiting on the list. Most don’t even bother to get on the waiting list. The good part…the services. The hitch…all of the rest of the families that will never receive them.
For us, it has been a blessing. Right now we have Diana, Christina and Marybeth working with Dayna. In the past….Becky, Amanda, Bernetta and countless others have worked with Dayna as part of the waiver. I could write a blog about each one of them (and probably will!), they are all wonderful people. It can be a struggle at times, but overall the services and the therapists are a big part of Dayna’s life, and our life as well. These are people that are with us almost every day in our home, and part of our family. They’ve traveled with us, come to weddings with us and celebrated with us. So why is Dayna turning 21 so scary? Because when Dayna leaves the education system, she leaves the waiver…..and everyone part of it and who have been part of us will no longer be provided to her.
Other states handle services differently, it’s not that Maryland is the only state that provides services. Some states provide services at home as part of the school system instead of a waiver, some are more willing to pay for private programs. But most have one thing in common, at 21, the child is out of the system. And if they still need daily help, it’s up to disability programs, social security and the families to make it up.
I’ve heard it described as falling off a cliff. Your child may be 21, but up to that point they were still attending school every day and in the case of Dayna, still learning new skills….even basic ones. Suddenly they are sitting at home….confused and without services. Their classmates and therapists are gone. To make it worse, their parents are now in their upper 40’s, 50’s and 60’s with a child that needs daily help.
The nervousness comes from the unknown. Some people ask us where we will ‘put’ her. Will we move her to a home so we can have a life. Right now, we can’t even think about that….scratch that, we can’t even imagine it. We’ve heard stories, we know they happen; we have watched them happen first hand. I mentioned Dayna’s therapist Diana earlier, she is the mother of a grown autistic son. She has experienced what can happen, and here is the article from just last year:
If at some point the link no longer works, the fact that is has “autistic-man-found-near-highway” should give you a clue. You are placing the life of your child, who cannot speak for themselves, in someone else’s hands. If something bad happens, they can’t tell you. Many of the providers are saints, and a few are not. Either way, its very scary, and right now it’s not worth either Deb or I spending any time worrying about our own quality of life when we are in our ‘golden years’. Some people dream of their retirement, we dream of ways to take care of Dayna. It’s a real conversation now, and we need to look at things like where we will live when it happens. We have to look at everything…Dayna’s future, Kiley’s college and Sean entering middle school all at once in the same year. My head started to hurt just writing that.
Tough blog to write, but a reality nonetheless. We’re about a 60 month car loan away from a whole new chapter.
Then again, we’ve kicked ass so far. Bring it on.