Last fall I took Samuel for an intake evaluation, part of the application process for what is called the "Individual and Family Medicaid Developmental Disabilities Waiver" for the State of Virginia. Once an individual is determined to be eligible for this they get put on a several year waiting list and then when services are approved the family is eligible for funding to assist with day-to-day needs. This will be very helpful to my family once the help we currently have is no longer available to us.
The intake consultant filled in some paperwork with us, completed a level of functionality assessment, and I left her with some papers from a 3-year evaluation that had been done by our school system for Samuel the previous fall (2005). I got a phone call a few weeks after that saying that Samuel was not eligible for this waiver because some test scores showed that his IQ was in the range of being considered mentally retarded. There is a separate waiver for those considered mentally retarded. I just received written notification of this last week and I have 30 days to make an appeal.
I'm not one to get all hung up on diagnoses or labels, but I do plan to appeal this decision. I want to make sure that we obtain assistance for Samuel in the correct way. I question whether the low test scores do indeed indicate mental retardation. The psychologist who tested him mentioned that she often could not understand his speech. There was also a large discrepancy between his verbal and non-verbal test scores and the psychologist stated that "results should be interpreted with caution." This seems like a very narrow circumstance to then apply a diagnosis of mental retardation. This all brings to mind what I am currently reading in Unstrange Minds: Remapping the World of Autism. In getting funded assistance for our children we are very much tied to the labels and diagnoses they are given, and these can be open to personal interpretation.
A friend of mine referred me to a consultant who coordinates state-funded assistance for her family. I explained my situation and am waiting to see what she thinks of this. I'll keep you posted as to the outcome.
3 comments:
Many people in the UK feel that statementing should not be done as it wastes money by the process.They feel that the education authority should give the care that is seen as needed by the schools. That I think is a load of rubbish. From my experience you have to fight every inch of the way to get anything that your child needs. If it is not in writing then they cannot be compelled to do anything.
Believe it or not in Russia, when you are diagnosed as a RETARD(their wording)it is with you for life and it is put in your passport(thankfully the UK doesn't do that!)
Some people I know say "just take the financial help any way you can get it," but I want to know what the implications of accepting funds from the "mentally retarded" waiver might have for other assistance we look for in the future. Besides, I question how well Samuel's testing was done. How can you consider someone as being retarded when part of their condition is difficulty in communicating what they might know in the first place? I'm frustrated by all the bureaucracy in this too. While the financial help is good, I'd really just rather be able to go out and say "hey, I need help!" and hire qualified people myself. Having to go through all this applying and screening stuff is frustrating, and then when you're approved it seems to be hard for the people contracted to help to find staff. Part of that just might be because of where we live (not in an urban area).
Good point about the "label." If you're going to be labelled here in the US, make sure you get the right one because yes, there will be certain implications later on. I hadn't thought of that til you mentioned it.
You're a wise woman!
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