DMA 8M Public Comment on CAP-I/DD 266

Note: Below is a Public Comment submitted to DMA regarding the 8M Clinical Coverage Policy proposal for CAP-I/DD during the 15 day comment period from July 28 - August 11, 2011. This exert was pulled from it's original source, a public record, and is posted exactly as it appeared save the removal of the submitter's personal contact information and abbreviation of last name.


[ More on DMA Public Comments. ]


Comment 266

To: Webmedpolicy, Dma
Subject: Home Support Program
Sent: Thursday, August 11, 2011 3:28 PM

To Whom It May Concern:

I am writing to voice my support of keeping the Home Support Program as it is. I have read the draft proposal, and am not pleased
with it.

My son is 21, he will be 22 in November. I started on the Home Support Program April 1, 2011. It has been a godsend. I finally knew
I could be at home with my son and provide him one-on-one care. Because of his goals, there is work involved. It is not like just keeping
him at home. I must now be his mom, his teacher, and his therapist.

I quit a job to do this for my son, for myself, for my family. I am a single mother. Now I might have to try to re-enter the workforce. How?
I would have to take whatever you give me, lose my car, lose my credit that I've just spent 2 1/2 years re-building, because when can I interview? Take him with me? Collect unemployment? Again, how? He will be at home, I can't leave him by himself. Or should I give up and let the
government provide inadequate care for him that will cost at least 5 times what I'm getting paid?

When my son was diagnosed with Dandy-Walker Cyst Syndrome almost 20 years ago, very little was known about it. (In fact, I still have only met
1 person who has a child with it. Now web-sites have been established for support.) Because I have been a single parent, and Randy has been on Medicaid since 1994, I had to remain poor to keep him on it. I couldn't get a raise, overtime, married, have anyone live with me, and when my older children turned 16, they couldn't get their 1st jobs. We all have suffered. Putting him in a home probably would've been easier, it probably still
would be easier, however having children is not about doing what's easier for you, it's what's best for them.

The worst part was, and is, knowing that at least one of my children will not survive me. He is under 5' tall, he barely weighs a hundred pounds, he
doesn't talk, doesn't walk by himself, is tube-fed, wears diapers and takes 3 anti-seizure drugs twice a day. The seizures started almost 4 years ago.
I believe that was the beginning of the end.

All I wanted was to be able to stay at home and take care of him, to not have to put him in a state run home. I want him to be cared for one-on-one, I want him cared for by someone who truly loves him, I want him to be happy every day. There's only one way that can happen, if he remains home
with me. And there's only one way for that to happen, keep paying me $500/wk, I can't afford anything less. It's still below the poverty line, it still saves the state over $100,000/yr per "client".

I don't understand the issue. This program should be expanded, not eliminated or reduced, and that's what this proposal does. It eliminates the Program that saves the state, what over $1 million, maybe billion per year, and incorporates it into another program that pays less. When the other
program should be modified to fit into the Home Support Program. If you get Home Support, you should not get any other services except Respite. Respite hours could be reduced from 576 hours per year to 416 hours per year, which would save the state the same amount of money as changing the Home Support Program.

Please, let me keep my son at home where he is happy, and healthy.

Thank you,

Judi H.