Leg. Correspondence, CMS, US HHS & Reports

Mary K. Short is a strong and active advocate and the parent caregiver of an adult DD recipient with profound needs. She fights tirelessly for the rights of her daughter, Katie and other special families, as well as a great deal of time keeping folks informed! Posted with Mary's permission.


Mary and her daughter live in NC House District 88 and Senate District 42. Her daughter is being served by Smoky Mountain LME.

From: MaryKShort@aol.com
To: Bev.Perdue@nc.gov, Thom.Tillis@ncleg.net, Phil.Berger@ncleg.net
CC: MaryKShort@aol.com, louis.pate@ncleg.net, justin.burr@ncleg.net, nelson.dollar@ncleg.net, martha.alexander@ncleg.net, william.brisson@ncleg.net, bill.current@ncleg.net, mark.hollo@ncleg.net, pat.hurley@ncleg.net, bert.jones@ncleg.net, marian.mclawhorn@ncleg.net, tom.murry@ncleg.net, fred.steen@ncleg.net, austin.allran@ncleg.net, doug.berger@ncleg.net, stan.bingham@ncleg.net, harris.blake@ncleg.net, jim.davis@ncleg.net, fletcher.hartsell@ncleg.net, eric.mansfield@ncleg.net, martin.nesbitt@ncleg.net, william.purcell@ncleg.net, tommy.tucker@ncleg.net, james.forrester@ncleg.net, andrew.brock@ncleg.net, ralph.hise@ncleg.net, marilyn.avila@ncleg.net, rayne.brown@ncleg.net, tricia.cotham@ncleg.net, beverly.earle@ncleg.net, shirley.randleman@ncleg.net, mitchell.setzer@ncleg.net
Sent: 6/25/2012 11:06:27 A.M. Eastern Daylight Time
Subj: Delay NC Innovations Expansion - URGENT

Dear Gov. Perdue, Speaker Tillis, President Pro Tempore Berger, and ladies and gentlemen of the NCGA:

I have tried over and over again to inform you of the urgent concerns I have had about DHHS/DMA/DMHDDSAS (the Department and its Divisions) in regards to the Medicaid 1915(c) waivers for the IDD/MR/DD/Autism population. I have tried to inform you of my urgent concerns regarding the role of CMS in approving waivers that were in violation of any number of federal statutes beyond CMS's own regulations, particularly the ADA and Olmstead.

On June 12, 2012, the Office of the Inspector General of the U.S. Department of Health & Human Services issued a report entitled, "Oversight of Quality of Care in Medicaid Home and Community Based Services Waiver Programs." I have provided the link to that report and copied the summary posted to the OIG.HHS.GOV web page below. Please see in particular the text I have highlighted in red/underline/bold.

I am once again asking you to stop the further implementation of the NC Innovations waiver. The fact that too much money has already been spent on the ADMINSTRATIVE components of implementation, is no justification for continuing the implementation. None of the LME/MCO's that have already transitioned have been adequately prepared. The absolute proof is NOT whether any one beneficiary has been institutionalized since their transition, but rather, the fact that none of the LME/MCO's is negotiating "enhanced" rates with providers for those beneficiaries who had been receiving CAP-MR/DD Enhanced services. Those Enhanced services are not available in the NC Innovations waiver.

Appendix J: Cost Neutrality Demonstration of the CAP-MR/DD Comprehensive Waiver (CMS NC 0662.R00.02 Jul 01, 2010): d. Estimate of Factor D. i. Non-Concurrent Waiver (chart). This document lists: Enhanced Personal Care Services # Users 366; Respite Nursing LPN # Users 37; Respite Nursing RN # Users 41; and Enhanced Respite Care # Users 415.

PBH, Pam Shipman, stood before the DWAC on Wednesday, June 20, 2012 and said that only 4 persons had a reduction/denial in services due to the transition: "No denials except for 4 requests for services or items not allowed under Innovations." [Link to document: (see page 11) http://www.ncdhhs.gov/mhddsas/providers/1915bcwaiver/dwac/6-20-12/pbh-presentation6-20-12.pdf.]

Please, delay the further implementation of the NC Innovations waiver.

Mary K. Short
828-632-5888 or 704-451-4144 (cell)

http://oig.hhs.gov/oei/reports/oei-02-08-00170.asp
Report (OEI-02-08-00170)

06-21-2012
Oversight of Quality of Care in Medicaid Home and Community Based Services Waiver Programs

Complete Report

Download the complete report: http://oig.hhs.gov/oei/reports/oei-02-08-00170.pdf

Summary
WHY WE DID THIS STUDY

In recent years, States have altered their approach to providing Medicaid-funded long-term care services. Rather than providing the majority of that care in institutions-such as nursing homes-States are now providing more care in homes and other community-based settings. States most often provide this care through 1915(c) home and community-based services (HCBS) waiver programs, and the individuals served by these programs are most commonly disabled and/or over age 65. In fiscal year 2010, Medicaid expenditures for HCBS waiver programs serving this population totaled an estimated $8.9 billion. Strong oversight of waiver programs is critical to ensuring the quality of care provided to HCBS beneficiaries. The beneficiaries who rely on HCBS waiver programs are among Medicaid's most vulnerable, and the nature of these programs puts beneficiaries at particular risk of receiving inadequate care.

HOW WE DID THIS STUDY

States must operate their HCBS waiver programs in accordance with certain "assurances," including three assurances related to quality of care. To meet these assurances, States must demonstrate that they have systems to effectively monitor the adequacy of service plans, the qualifications of providers, and the health and welfare of beneficiaries. We based this study on a review of documents from CMS's most recent quality review of waiver programs from 25 States, as well as information gathered from structured interviews with staff from the 10 CMS regional offices.

WHAT WE FOUND

Seven of the twenty-five States that we reviewed did not have adequate systems to ensure the quality of care provided to beneficiaries. Although CMS renewed the waiver programs in all seven of these States, three did not adequately correct identified problems. Not only did these States fail to correct these problems before renewal of their programs, they also had still not adequately addressed the problems long after renewal. In addition, CMS did not consistently use the few tools it has to ensure that States correct problems related to quality of care.

WHAT WE RECOMMEND

We recommend that CMS: (1) provide additional guidance to States to help ensure that they meet the assurances, (2) require States that do not meet one or more assurances to develop corrective action plans, (3) require at least one onsite visit before a waiver program is renewed and develop detailed protocols for such visits, (4) develop a broader array of approaches to ensure compliance with each of the assurances, and (5) make information about State compliance with the assurances available to the public. CMS concurred with four of the recommendations and partially concurred with our recommendation to require onsite visits.

DMA 8M Public Comment on CAP-I/DD 294

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 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.

DMA 8M Public Comment on CAP-I/DD 227

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 227

To: Webmedpolicy, Dma
Subject: Proposed Changes
Sent: Wednesday, August 10, 2011 2:52 PM

I certainly understand the challenges of continuing to provide a full array of appropriate and necessary services via the CAP-MR/DD waiver in this most difficult economic climate. But, a number of the proposed changes to the CAP waiver need to be reconsidered due to the potential, and likely, negative impact they will have on consumers of service, and their families.

First, the removal of Home Supports seems to be antithetical to one of the primary intents of the waiver (i.e., assist individuals in continuing to reside in their community). For many families, this service is the only thing that prevents them from having to place their child in a more restrictive setting (e.g., Group Home). Ironically, in order to be placed in a group home, the CAP consumer would need to receive Residential Supports. Given that Residential Supports is almost identical to Home Supports, it seems illogical that the proposed waiver change would force an individual to move to a group home in order to receive essentially the same service they used to receive at home. Moreover, given that most individuals receiving Home Supports receive more hours per week than parents would be allowed to work (40 hours), per proposed changes to the waiver, additional staffing would be needed to meet the previously determined medical needs of the individual. On the surface, it makes no sense to force families to have outside staff come into their home to work with their family member due to an arbitrary determination that family members can work no more than 40 hours per week (providing a combination of HCS and Personal Care). The reality, which is known to all of us, is that parents already work many more hours with their family member than is required by the various Home Supports levels. Thus, the 40 hour limit seems rather arbitraty and solely designed to reduce costs.

Second, the removal of enhanced serviceswill almost certainly lead to increased rates of out-of-home placements. I understand that the State wishes to decrease costs by eliminating this service, but the higher rate of pay for enhanced services helps to ensure agencies can afford to provide families/staff with consultation/supervision by the professionals (e.g., nurses, psychologists) required by this service. Without the enhanced rate, agencies will not be able to provide the additional consultation and training required to ensure staff are competent to provide needed supports, and thus individuals' needs will go unment. As needs go unmet, consumers of CAP services will experience increased behavioral and medical challenges. And these challenges will result in increased rates of institutional/emergency/out-of-home placement. I understand the Innovations waiver does not include enhanced services, but I do not feel that the desire to have the CAP waiver closely match the Innovations waiver is sufficient reason to simply discontinue a service that is critical in helping many individuals to continue to reside in their communities.

On onother topic, the State has done a woeful job of informing families and consumers of proposed changes. Most families and consumers of service have no idea that the State is even proposing changes to the CAP waiver. Because of this, the vast majority of consumers and families will have had no opportunity to provide input regarding the State's proposed changes. To implement any changes without ensuring all vested parties have been directly contacted by the State regarding proposed changes, and thus have had the opportunity to provide comment, is unfair and certainly poor practice.

Finally, the new waiver makes reference to Behavioral Analysts as professionals who can provide CAP services. As has been communicated on numerous occassions by various parties, the practice of behavioral analysis, per the NC Psychology Practice Act, considered the practice of psychology. As such, it is illegal for anyone not licensed as a psychologist, or not supervised by a psycyhologist, to provide behavior analytic services. The only caveate is that other professionals certified/licensed by a regulatory board would be exempt from the authority of the Psychology Practice Act. If, of course, behavior analysis was within their scope of practice. Behavior Analysts, however, are not covered by any NC regulatory board. Thus, it is my understanding that it would be inappropriate to include them in the list of professionals who are eligible to bill for CAP services.

Edward H.