[ More on DMA Public Comments. ]
Comment 294
To: Webmedpolicy, Dma
Subject: 8M-CAP-I-DD
Importance: High
Sent: Thursday, August 11, 2011 10:01 PM
Attached, please find a document detailing my concerns regarding the new 8M-CAP-I-DD policy.
The new proposed 8M CAP Policy to take effect in November 2011 is a devastating blow to families affected by a developmental and/or physical challenge. It is incomprehensible how my daughter, Chelley, age 12, diagnosed with Autism, will escape being institutionalized. How is it that this great government of ours will rush to the aid of other countries in need, but cannot recognize the great need in THIS country? I have an enormous amount of concern about how inhumane this new policy will be towards those not classified as “typical”. It’s almost as if we are living in a Hitler regime, where those not deemed to fit a certain class or characteristic should be punished is some way, because they are looked upon as degrading the race or inferior to what they call “normal”. What kind of world have we become when compassion and humanity can only be expressed in the public eye to impress other nations, and not an actionable standard at home? I am ashamed to say that this country’s standards/motives reflect nothing that our forefathers fought for.
Below, I have outlined how this new policy will negatively impact my child, my family, my life (if that’s what one would even call it).
Concerns with the proposed 8M CAP Policy:
- Enhanced Care: In 2010, Chelley had 100+ appointments. She was in the ER a few times and was hospitalized 6 times during the latter part of 2010. As a result of battling with an array of illnesses, she was only able to attend school SIXTEEN (16) days this past academic year. I am twice divorced to 2 cowardly men. I work two steady jobs, and during tax season, that goes up to 3 steady jobs. I am the primary caretaker of my 87 year old widowed father, and my 23 year old daughter, Christine, still in college, who we recently informed me, is expecting a child in October! (This just means another dependent to care for in the very near future). Because of my busy schedule and family responsibilities (both physically and financially), I am dependent of professional care for my daughter Chelley. Her health is very fragile, and the need for quality care is essential. Without the right enhanced services in place, I would have to quit all my jobs and stay home and care for her myself. And that would only lead me to be dependent on public assistance, which in turn would not be able to pay for her care, our home, basic standard of living...so that’s not an option. So the only alternative would be to institutionalize Chelley, which would NOT provide her with quality of life, and where she feels most acclimated and safe. This option is also against Chelley’s wishes and the family’s wishes. And that would be a tremendous cost to the government in the end. Eliminating Enhanced Care would have a tremendous NEGATIVE impact!
- Home Supports: The change back to coupled services is the best thing going in this new waiver!
- Habilitation Limitation: The maximum habilitative limit coupled with maximum personal care limit is clearly not enough for me to work my 2-3 jobs. The purpose of my working these additional jobs is to be able to supplement for Chelley’s care....which to me...is doing the government a favor. Because if she is institutionalized, that financial burden will fall in the good old US government’s lap. (Reminder: an institution is against Chelley’s and the family’s wishes) A typical family working member is required to work a 40 hr week outside of the home and come home from work and provide another 80 hrs a week to care for a disabled loved one. Because I don’t have a typical work week, my number of hours is substantially greater. Chelley is in need of consistent long-term person centered care!! Children with disabilities learn at a slower rate than the average person but yet the highest need individual can only receive 129 hrs per month? And I understand that there will be no exceptions? Whatever happened to the person centered approach??? These limitations surely support my belief of us living in a Hitler society. How can anyone deem that one set amount of time is suitable to everyone....regardless of their limitations, their dependencies, their abilities, etc.? Our children, both adults and minors, need additional care for a lifetime and it needs to be person centered so they can become productive in their community! Our children’s needs are great!!! Many individuals, specifically my daughter, will lose their freedom and possibility their life if this new waiver should take effect!
- Personal Care Limitation: Please refer to my notes in Habilitation Limitation. Just to reiterate....The UR limits will cause many to be institutionalized!!!! My daughter will be one of them! This negative impact will be the detriment of not only my daughter, but my family....society will miss out of gaining a wonderful viable member; the government will be greatly impacted financially, etc. But more importantly, an institution is against Chelley’s and the family’s wishes.
- Family Member: If it were not for the love of family, I think that my daughter would be a forgotten person in our society. We are quick to sweep problems under the rug so to speak and ignore people who are truly in need. But thank God that Chelley is loved by her family, and we are willing to stand up for her and protect her and provide her with the individual care that she needs. The BEST care that Chelley receives is from her family, because we have the patience, and the knowledge of her individual care, and always make the decisions which best fits her individual requirements. But this new policy seeks to limit the individual care provided by family members. This is not even logical!! What external staff will be willing to stay up hours upon hours each and every night when a child’s sleep patterns is only 3-5 hours? What external staff will be willing to sacrifice their time to fill out endless paperwork, attend grueling appointments/meetings, sacrifice not ever taking a vacation, etc.? External staff will not endure the pain and heartache that family members endure for the sake of caring for a loved one? And what about when qualified staff cannot be found, or are in transition? Who picks up the slack? How in anyone’s right mind would it be a good idea to punish the work and time that families put in for the care of their loved one?
- Home Modifications: How is the 15,000 factored into the budget? Does it go toward the total cost of the current budget year? For example, participant current budget is 125000 without home modifications. Home modification is 13,000. This puts current budget 138000 but less than 15000 in 5 years. Would this case a denial in Home Modifications/Services? Although this does not personally apply to my daughter, it is still concerning. For example a specialized bathroom for a person who truly needs it, is not a luxury item and but rather is needed for health and safety. Adding an assessable bathroom into an existing bedroom should be added to the inclusive list. This would not be needed or provided for another child in an average home. Without this it would jeopardize the health and safety of the individual and put an individual at risk of institutionalization.
- Respite: Restricting how Respite is to be used is purely inhumane! I work 2-3 jobs, work countless additional hours in the home caring for my daughter, don’t have options for vacation because of my unique family situation, have daily interruption of sleep, etc....and yet the state dares to think that I should not be entitled to some occasional respite to get some relief at my discretion???? Currently there is no other service that would be appropriate....and the reason why I and other families cherish every moment that can be had from respite care. And if I may add, those respite hours are not always spent resting...which is a novel idea....but I use those hours to give me time to grocery shop, to clean my house, to fill out paperwork, to cook, to do laundry, to care for other family members in my home, etc. It is impossible to accomplish all that I do for my daughter without having some occasional free time (if I can even call it that). With the past waiver, how many “typical” families can say they could survive on just 576 hrs per year of down time? It would be unfathomable!!!! I’d like to meet the person or committee who agreed to enforce this restriction. I would love to have them visit me and stay for a while to truly evaluate whether their decision was conscionable!!!
- 2.0 Eligible Participants: for the CAP waiver notes “Waiver-Specific Requirements” A person with mental retardation, developmental disabilities, or both may be considered for CAP-I/DD funding if s/he fulfills all of the following criteria: Can maintain his or her health, safety, and well-being in the community with the program”. Please clarify! If I am reading this correctly it states that individuals with great need will no longer be eligible for wavier services and will have no choice but to live in an institution. What does this mean for current participants that have high needs? Is there specific criteria that drives this statement? Who and or what makes that determinations; an individual; a committee; a dollar amount?
Marie P.
