ote: 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 361
To: Webmedpolicy, Dma
Subject: Comments to proposed CAP MR/DD Manual
Sent: Friday, August 12, 2011 3:04 PM
I have two major concerns about the proposed CAP MR/DD Manual. My 20 year old daughter is profoundly physically and intellectually disabled. She requires 100% care and has special medical and behavioral needs.
Proposed Elimination of Enhanced Personal Care
I am very concerned about the proposed elimination of enhanced personal care. This has been an authorized service because of an identified need of a small segment of the CAP waiver recipients. What is the justification to eliminate this service? It is certainly not because there are no longer any CAP recipients "who have intense medical or behavioral needs." I thought the objective of the CAP MR/DD waiver was to keep individuals out of institutions. Cutting services to individuals with the most complex needs makes it more likely that some of these individuals will have to be placed in 24 hour residential settings. This will not improve the quality of life for these individuals nor will it save money. In fact, it will cost a lot more than providing these individuals with enhanced personal care.
At the pay rate for regular personal care services, it is impossible to find and keep good staff qualified to make decisions regarding behavior management, to carefully monitor seizures, to provide g-tube feedings, and to safely transfer my daughter who has had several major orthopedic surgeries. My daughter needs consistency and I need a break physically from 20 years of caring for my daughter. Frequent turnover of staff and/or going for long periods without staff because of the low pay for personal care services would be very detrimental to my daughter's quality of life and safety at home.
Limit of 129 hours/month of Habilitative Services
Again, a decision has been made not to differentiate between CAP recipients based on their level of need, currently measured by SNAP score. I believe providing the same limit of 129 hours/month to all CAP recipients discriminates against my daughter and others with high levels of need. For adults who are no longer enrolled in public schools, there should be a higher monthly limit for habilitative services, incremented by SNAP Level.
When my daughter ages out of public school, she will need opportunities to participate in the community. I hope to enroll her in a day program which operates 6 hours/day 5 days per week. That one program will use up all of the allowed habilitative service hours. But my daughter needs habilitative services for other community experiences such as weekly Special Olympics bowling, a weekly community drumming group and a monthly evening social gathering. In addition, she has habilitative goals to work on at home.
These two policy changes seem to completely disregard the quality of life of CAP MR/DD recipients for the sake of an easy way to save a relatively small amount of money. I ask that these two changes be reevaluated, with a sincere consideration of quality of life and safety. Please don't abandon the CAP recipients with the greatest needs.
Thank you,
Beth H.
Wilmington, NC
