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 257
To: Webmedpolicy, Dma
Cc: Marty Johnson; marysam@westernhighlands.org
Subject: comment on cap changes for I/DD
Sent: Thursday, August 11, 2011 1:35 PM
To whom it may concern,
The changes that maybe made to CAP for l/DD will greatly impact my "son'. Especially, the changes to Residential. lf the changes go into effect, my wife and I will probably have to seek ICF/MR placement for him.
This is a long story. My "son" came to live with us when he was five. He had already been assessed at Amos cottage in Greensboro twice which recommended that he be institutionalized. The foster home that he was in could only contain him by locking him in his room. He came to us with CAP services and we were his foster parents. During the first eighteen months, we had a habilitation worker for 6 non-consecutive months. No afterschool or summer program would work with him without a worker. Both my wife and I were taking off work to cover his care which started to put us in trouble at work. At this point, the local Area Program helped my wife to become his CAP provider. This solved the
problem for us for a long time. Our "son" made a great deal of progress. We had wanted to adopt him, CAP made several back and forth decisions on parents providing CAP services for their children. And given our experience with not being able to keep CAP workers(which put our jobs at risk), we decided not to adopt him to be able to continue to have him live with us. I could not see giving him our name, if he then had to live outside our home. Overall CAP has worked well for him and made a different prognosis from the earlier one possible. When my "son" became a teenager, it became necessary for my wife and I to switch roles. She now works outside the home and I work with my "son". My "son" has autism and mental retardation. And despite medical intervention, he does not sleep through the night. When he gets up, I have to get up with him as he willget into the kitchen, etc. without regard to his safety.
The proposed changes to residential with limits to day supports and respite v0ill impact us greatly. I have experienced working around the clock with our "son" during the last three summers of high school when no summer programs where available or would take him because of his activity level. When he left school and started a year round day program with day supports, lwas able to recover from being worn out. Now I am able to prepare for my "son" while he is at the day program.
For many years we had a couple who provided overnight respite for our "son" in spite of his not sleeping. But two years ago, they had to stop. Since then I have had one ovemight break, despite numerous requests for service providers. To keep going I have used hourly respite during the day to take a break. Without this it will be difficult to keep going and will place a financial hardship on our family.
Thank you for listening.
Martin J.
Asheville, NC
