I’m loving where this is going. I’m starting to hear brief personal stories of those that were denied. In Virginia, the screenings are extremely discriminatory towards individuals with autism, and in some cases like ours, it was 100% predetermined. I did not edit the writings below, mainly because it wouldn’t be quotes if they were changed. Here are a few:
“I live in Henrico. When I called to set up the screening the lady on… the phone said my son would meet Functional criteria and maybe the medical but not the imminent risk. She said “I’ll arrange the screening but it sounds like he isn’t going to meet criteria. So she already made up her mind before even coming out. They sent the letter about what to have available, all the medicines and paperwork. They barely looked at any of it. It was frustrating to say the least. I told my husband when they left that they already made up their minds ahead of time. I have sent an appeal letter in and I’m waiting to hear back. My friend is having issues in Chesterfield too for her son.”
– “M” in Henrico County, Virginia
“Upon applying for out waiver in 2013, a health department nurse came… to our home for the screening. Meanwhile I had my sons behaviorial therapist/advocate at the home with us during his screening. The very old school nurse pleaded to tell me how we were nor going to be approved for my sons autism, that this waiver was for elderly people. I just Piered over at my sons therapist with confusion and she nodded me to go forward. I then explained to the lady that I was directed from spectrum transformation group,who diagnosed and was helping my son, and they have given me pamphlets and instructions on how to apply for the waiver. The health department nurse then flips her who script and starts talking about her nephew with austim ( who she knew little to nothing about) I was completely astonished with how many health care officials have lack of knowledge of the austim spectrum. The story she told me specifically stated ….my nuphew had autism and began typing to his mother on the keyboard. The mother was so excited he was communicating but she was making it all up bc when she left the room he wasn’t doing it anymore! … I wanted to come across the table at that lady. Just bc he isn’t doing it for others doesn’t mean he wasn’t communicating with his mother. My son began communicating on his tablet and blossomed from there. Watch out these health care officials have no knowledge on autism.”
“i relate! especially lately.
funny how some pity people with disabilities. ….misplaced pity. what is a pity is how our voice is not heard, causing the lack of services and/or items we essentially need to be the best/healthiest we can be. that’s what is a pity!!”
– “I” in Williamsburg, Virginia
I think what you are doing is very commendable. We have the exact same problem in Newport News/Hampton area. If a kid has autism, the screening team attempts to talk the parents out of the screening on the phone and the child is denied 100% of the time unless there is also some major medical issue like being in a wheel chair, feeding tube (even that doesn’t always get it), tumors, seizures (again even this doesn’t always help), etc. I’ve even been told that nursing home placement isn’t appropriate for a child with autism, but psych may be. Parents of children with autism need as much help (in some cases more) than those of kids with medical needs. Wouldn’t it be great if there was an autism waiver in Virginia like there is in North Carolina? Maybe that’s what we need to fight for. Companion and respite services for people specifically with autism. Keep fighting this fight! When you win, it will set the precedent for so many others to follow.
– “J” in Newport News, Virginia
As you can see, it happens far too often. It’s disgusting that this has been happening for years and it continues to happen. NO ONE, regardless of need, should have to tolerate such discrimination. It’s not only discrimination, but a complete violation of human rights! I do hope I get MANY more comments. I also have a Facebook page titled “Medicaid Waiver Denial” and I would love for you to join, be supported, and get the latest updates.
Again, thank you so much for reading! -Wendy