Raising early intervention and autism awareness through our amazing journey

The fight continues..

This entry will describe to a certain degree the discrimination that was conducted during our screening for the EDCD medicaid waiver. I have been told by mothers of autistic children, our son’s special needs physician, and from advocacy and society groups, that this happens way too often.

When we were given our son’s diagnosis of Autism, Global Developmental Delay, and hypotonia, we had no idea where to start to get help for our son. The last thing we thought would happen was to have doors close in our face one after another, and to be denied services time and time again. I was floored to learn that medicaid does not have a waiver for autism, nor do they allow a child with a sole diagnosis of autism to get any type of waiver until age 6, and even then they will probably be denied.
The only way we were able to have Milo screened at all was because he has hypotonia which is a medical disorder. Medicaid considers autism as a behavioral disorder because it is listed in the DSM 5.

Milo was granted standard Medicaid by a data entry error which entered our family income as zero. For waiver services, the income is based on the person with the diagnosis rather than the family income. Of course, Milo’s income is zero, but he was denied the waiver last year. We think that is where the data went wrong but who knows. When it was time to renew medicaid, we were told about the mistake and informed it would end in 30 days. So we quickly applied yet again for the EDCD waiver. That is when all of the heart breaking discrimination began..again.

I called to speak with the supervisor of the social worker that was part of the screening team last year. I thought it would be a simple answer to how we could apply again. We were told that the case would not be opened again. What? We can’t even have our son try for help again? I argued with this man for thirty minutes and he finally agreed to LOOK at the case. He called back a few hours later and stated he was only going to open it due to the hypotonia. I thanked him, which was followed by him stating he wasn’t doing me any favors. Ummm..okay.

So we finally had a date set for the screening. We thought for sure it would go well; we would have a new pair of eyes and ears. Oh, we were very very wrong.

You will see the statements that were made in the below letter that my husband and I wrote and sent. In the letter we did not go into the tone of how these comments and actions were made, but it was the worst you could imagine. We were degraded, not heard, and lied to, in our own home by employees of Social Services. My husband and I were both in tears as they left. I hope this letter gives a glimpse of how the past few months have been for us. I’m not sure if my son will get the medicaid waiver that he deserves, but this is not over.





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