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, including the commenter's highlights, save the removal of the submitter's personal contact information and abbreviation of last name.
Comment 323
To: Webmedpolicy, Dma
Subject: 8M-CAP-I-DD
Importance: High
Sent: Friday, August 12, 2011 11:46 AM
To Whom It May Concern:
I am a parent of 3 adult males who receive services through the CAP-MR/DD program. They live at home with their Dad and me. I provide paid support services for each one of my sons under home supports ( 2 sons- 9 days mo. each, the 3rd son 12-13 days month) Plus me & their Dad put in countless hrs. of volunteer time. Home Supports has not worked well for my 3 sons. It is not designed for those who have more one person in the home receiving CAP services. I need the flexibility to work with which ever son needs me the most on a given day or divide up a day among 2, sometimes 3 of them for many different reasons (mostly lack of qualified, dependable outside CAP workers, sometimes medical reasons, etc.) “Everybody needs to be on the same page working by the hour so HCS & PC hours can be used by any CAP worker who works with the consumer..” The way things are now the hrs. in POC are divided into too many pots. I am locked in this HOME SUPPORTS POT I can only provide a pre determined days of service to each son per month. For instance say son number (no.) 1 has a need today and I am the only qualified CAP worker available to meet that son’s particular needs, and I have already worked all my allotted number of days with him. I can’t switch son no. 2 that I am working with today over to another CAP worker who is qualified to meet his needs because I have already used all my allotted days for son no. 1. The daily rate I am being paid comes from one pot and her hourly pay comes from another pot, she can meet son no. 2 needs, I can better meet son no. 1 needs, but with all this hoopla there are times when their medically necessary needs are not met, because I am locked in this HOME SUPPORTS POT Also there are times when son no. 3 doesn’t have a CAP worker for several days, I can find a Cap worker for son no.2 & dad volunteers with son no. 1. The problem here is, I am locked into pre alloted days I can work with him. What are we going to do to get their needs met? Another thing, what if something happened to me or another parent and we couldn’t provide HS services for a week or so. The hours locked up in this HOME SUPPORTS POT couldn’t be used by other hab techs to meet the consumer’s PC & HCS needs. Believe me it is virtually impossible to get a CAP worker to provide respite services especially for more than a few hrs.
THIS 8M-CAP-I-DD WAIVER ISN’T DESIGNED TO MEET THE NEEDS OF CONSUMERS WHO ALSO HAVE OTHER PARTICIPANTS LIVING IN THE SAME HOME. “This 40 hour per week thing would really put a hardship upon our family.” . We are always diligently seeking for qualified, dependable CAP workers to work with our 3 sons. Even with me working 7 days per week under home supports we cannot find enough outside help to meet all the hours of their plan of care. It is very difficult to find qualified, dependable CAP workers to work with adult males who are dual diagnosed with some behavior issues at times, plus the job doesn’t pay enough, no benefits and staff have to use their own vehicles & insurance with very little mileage pay. When we can find help someone has to be off a day or 2, a week, sometimes longer, come in late or leave early. Right now I have one worker who is quitting Aug. 27, another one who comes to work very sick and in a few days is going to have to have part of her bowels removed, the other one says she can work 3 days a week. We have no good prospects in sight. It usually takes at least 6 mo. sometimes a year to fill a position. Because of this I can’t seek employment outside the home. Even when I have help I am always on call. Somebody asking me questions, training new staff, juggling everybody’s schedule, the schedule changes several times a month. Also a CAP worker who can work with one of my sons usually isn’t qualified or won’t work with one of the others. There are times if I can get a neighbor or family member to help me a few hours I have paid them out of my own pocket. WE CAN’T LEAVE THEM WITH JUST ANYONE. One of my sons was RAPED, the other 2 SEXUALLY MOLESTED by another CAP worker. My sons have been HIT, VERBALLY & EMOTIONALLY ABUSED, LEFT IN THE CARE OF SOMEONE NOT EMPLOYED BY AGENCY, LEFT IN PARKED CAR WITH MOTOR RUNNING, & LEFT UNATTENDED WHILE HAB TECH TOOK A NAP. “Other parents, grandparents can tell you HORRORS like these also. “ That is why we family members started providing services so our adult children could be taken care of . WE DESPERATELY NEED TO BE PERMITTED TO PROVIDE EVER HOW MANY HOURS OF SERVICES THAT IS NECESSARY TO MEET THEIR MEDICALLY NECESSARY NEEDS ACCORDING TO EACH ONES POC. Other CAP workers are not limited to 40 hrs. per week and it isn’t going to add cost to their POC. Why would any one object to parents/relatives providing "excellent” services over 40 hrs.per week when we can’t find qualified, dependable outside CAP workers to do so? “ Which in our case is every week.” OUR SONS VERY MUCH WANT TO LIVE AT HOME WITH US. IT ISN’T THE EASIEST ROAD FOR US TO TRAVEL. HOWEVER, WE WANT THEM TO BE CARED FOR IN THE LEAST RESTRICTIVE ENVIRONMENT POSSIBLE AND FOR THEIR RIGHT TO MAKE A CHOICE FOR THEIR CARE NOT BE VIOLATED.Here we are devoting our whole lives to our adult children, who have been violated by CAP workers and it seems like you expect us to volunteer more and more of our time. There are parents who have put their adult children in state care 24/7 who are able to keep them at home. If you expect all this volunteer time from us then you should send those adult children back home for their parents to take care of them also. What about AFL Homes they are paid 24/7. Our 3 sons are going to be in danger of being put into state care 24/7 if I am cut to 40 hrs. per week. PLEASE BAN THIS 40 HR. LIMIT ON FAMILY CAP WORKERS OR PLEASE MAKE AN EXCEPTION FOR FAMILIES LIKE OURS WHO HAVE EXTENUATING CIRCUMSTANCES. Even when I have to provide 84 hrs. per wk. of CAP services among 3 adult sons. I & their Dad are still volunteering dozens of hrs. per wk. I can provide letters from others about the quality of care I provide and the endless effort I make to keep them included in the community. I travel 500 + hrs. per month to make sure their POC is met. Both you and I don’t want them to be socially isolated. I don’t provide care so I can profit. Everything I do & everything I have is for them. However, if I am restricted to 40 hrs. per week there is going to be a lot of social isolation here because of lack of qualified, dependable, outside of family, CAP workers available to provide services. Even now there are times when we have 2 CAP workers besides me I am the one who has to provide the transportation for everybody. I cannot continue to do this if I am limited to 40 hrs. per week.
The 8M-CAP-I-DD waiver section H d. states that the PERSON CENTERED PLAN shall outline measures that ENSURES THE PARTICIPANT’S CHOICE and CONTROL OVER HIS DAILY LIFE and PROMOTE COMMUNITY INTEGRATION. In our case when I, the mother am the only qualified CAP worker available to provide services (this happens every week) and if 8M-CAP-I-DD won’t let me provide paid services (over 40 hrs. per wk.) then my 3 SONS CHOICE & CONTROL OVER THEIR DAILY LIVES WILL BE VIOLATED & THEY WILL BE SOCIALLY ISOLATED.
The issue of CAP workers not providing respite services if they accompany family on out of state on vacation because , family caregiver, is present. In our case we desperately need staff to accompany us. We have 3 sons who need one on one attention therefore, we are technically not really there for the son who has a CAP worker with him. We are there for the other 2 sons. Words cannot articulate how extremely important it is for the boys to get to go on vacation. How much it helps them emotionally . It is getting more difficult for us to handle it. Especially if we have an emergency. For our SONS’ SAFETY & WELLBEING Will you PLEASE! PLEASE! reconsider this policy especially for families with multiple CAP recipients and make an exception
PLEASE DON’T VIOLATE OUR ADULT CHILDREN’S RIGHT TO HAVE CHOICE & CONTROL OVER THEIR DAILY LIVES, NOR IMPOSE REGULATIONS (like limit family members to 40 hrs. per week) THAT WILL CAUSE SOCIAL ISOLATION, BECAUSE THEY CHOOSE TO LIVE AT HOME WITH THEIR PARENTS AND CHOOSE FAMILY MEMBERS TO PROVIDE “EXCELLENT” CAP SERVICES TO MEET THEIR MEDICALLY NECESSARY NEEDS ACCORDING TO THEIR PLAN OF CARE. PLEASE REMEMBER THE DECISIONS YOU MAKE EFFECT VENERABLE PEOPLE’S LIVES WHO CAN’T HELP THEMSELVES
YOUR DECISIONS CAN GIVE THEM GOOD QUALITY OF LIFE OR MAKE THEM MISERABLE. MAY GOD HELP US ALL !!!
I know I have rambled a bit. I hope you can understand our unique situation. If you have any questions Please Contact Me.
Margaret H.
Mount Airy, N.C.
P.S. What if I mother/legal guardian move out of family home or into apartment B. Would I still be limited to 40 hrs. per week? Do you think this will help the CAP recipients in our home?
