The struggle for access to therapy and support

My son was diagnosed with Autism when he was six years old. It was difficult, sometimes painful, and very much a learning experience. But we were lucky on many different levels.

We live in Seattle, and we had a choice between Seattle Children’s Autism Center and The University of Washington Autism Center. We got on the waiting list and were referred to both. I wasn’t working at the time, so I was able to jump on any cancellations and openings they had for evaluations.

After we got his diagnosis, the hoop jumping continued. We applied for SSI, which meant a great deal of paperwork, only to discover we don’t qualify. We made $100 too much per month.

I called numerous ABA therapy programs*, speech therapists, and occupational therapists. I also got him on waiting lists for talk therapy to deal with his anxiety. We have gotten into two summer ABA programs*, two speech therapy sessions, two social skills groups, and three occupational therapy sessions in the last three years.

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Occupational therapy included swim therapy, which was such an amazing time investment for us. Having a child who knows how to swim alleviates so many fears.  Especially when they sometimes lack judgement and coordination.

We are still on the waiting list for talk therapy. It’s been more than a year since he’s gotten into a speech therapy program. He still struggles with reading, writing, and learning difficulties related to speech and language processing.

Today, as I write this, I just finished dropping off the paperwork for him to start a new social skills program. It was a half hour drive just to drop off paperwork I couldn’t provide via digital file. I had called this particular provider right after we had gotten the prescription for ABA when my son was six. He is now nine.

There is such high demand for these programs that the waiting lists are years long.

I can’t even imagine how difficult it is to get therapy if you live elsewhere. Even for us, many of the programs involve at least an hour of travel each way.

Access to care is limited by location, determination, and time. Some people lack the time to do all the follow up work I do. Others lack the emotional endurance and support to handle the stress of keeping up with the phone calls, the paperwork, and the schedule.

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Phone calls and keeping up with the scheduled appointments is always a chore.

Then, there’s the ways in which care is further limited by a parent’s availability, income, and transportation. I have a car, I work part time, and am able to take him to programs after school.

Many parents don’t have a flexible schedule and a spouse who is able to work from home when needed. Many others don’t have reliable transportation. And even more don’t have access to quality care and the insurance programs that we currently have.

Apple Health, a Medicaid program makes all these programs available for us and covers my son’s medication. We wouldn’t be able to afford any of the therapy programs without it.

I worry about all the families out there without decent insurance and access to care. I worry about those who aren’t as lucky as we are. I worry about our future, the possible cuts to health care and school funding for aides and special education.

I love and adore my little boy. He is so much like me, and I know he will be fine. But he is happier thanks to all the care, medication, and therapy we have been so blessed to have access to. But we could benefit from more: more therapy centers, more social skills programs, more skilled ABA providers, or better yet, insurance coverage for therapy programs beyond ABA.*

The more programs out there, the more choices and opportunities children and families will have to access care. The more access to care, the more well adjusted and happy children and families will be.

 

 

*ABA is controversial and not well liked in the Autism community. I am Autistic myself, but I didn’t go through ABA.

Practices in the past were abusive, and even modern ABA gets a lot of criticism. For those of us stuck in the situation of needing the help with our kiddos and not being able to afford other programs, ABA is our only choice.

I’ve seen a lot of good, and some bad in the programs my son has participated in. I haven’t given up hope in the help that it can provide.

For the most part, the programs here have been excellent and the aides are genuinely good with the kids. I chose to put my child in two summer ABA programs because they were a far better alternative than trusting the average daycare or school program (so many terrible experiences from before he was diagnosed) with my son. We can’t afford other programs, so we were very thankful to have access to a summer long ABA program.

My son loved the first summer he spent in ABA and asked to return for a second summer. The second summer wasn’t quite as great. He had two major meltdowns and I began taking him out of the class during lunch to get some much needed outdoor time.

 He still got a lot out of the program, he did a lot of reading, writing, learned to tie his shoes, and became really fond of one of the aides. But we won’t be returning this summer for a number of reasons.

The method that bothered me the most was ignoring outbursts and meltdowns. They’d push him to a breaking point and then ignore the resulting meltdown. The logic in this, was not to reinforce the negative behavior.

This method was also employed by my son’s first Special Education teacher.

 This, I do not agree with. Meltdowns are not a way to get attention. They were caused by stress and frustration. My little guy is very sensitive and loving. Ignoring him just caused him to meltdown further when he needed reassurance and help to re-regulate his emotions.  

Redirection and distraction are a far better method for my child. His new Special Education teacher does this amazingly well, and my child no longer escalates or melts down at school.

 

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