Tillis Requests Special Session To Address PCS/Group Home Crisis

From The Arc of North Carolina

Tillis Requests Special Session To Address PCS/Group Home Crisis

Special Session first step to solve crisis before Holiday break   Speaker of the NC House Thom Tillis has formally requested that Governor Perdue convene a Special Session of the General Assembly in order to address the looming Personal Care Services (PCS) crisis that threatens the housing of thousands of people with disabilities living in group homes. The Arc of North Carolina is thrilled by this development and appreciates the Speaker's leadership on this issue and his continued dedication to North Carolinians with intellectual and developmental disabilities. The Arc will continue to keep you updated on the PCS/Group Home Crisis as it develops. Please check www.ArcNC.org for information as it happens. The Arc's advocacy staff is evaluating it's next steps in terms of advocacy. Look for an action alert next week. The letter from the Speaker's office is below. See a copy of the original here. --- Governor Perdue, As you know, the General Assembly appropriated $39.7 million in this year's budget to provide for temporary, short-term assistance to residents who would no longer be eligible to receive Medicaid State Plan Personal Care Services under the new eligibility criteria, effective January 1, 2013. The budget provision was drafted as a short-term measure to ensure the funds went to those affected residents who would be potentially discharged from their facility, but would not immediately have a safe community placement. This budget provision was intended to prevent the Department of Health & Human Services from using funds for administrative expenses, appeals, rent deposits, or other items, as requested by the Department during budget negotiations. The Blue Ribbon Commission was summarily tasked with developing long-term solutions to ensure Medicaid beneficiaries receive the services they need. The General Assembly has been working diligently over the last several weeks and months to determine solutions that would prevent the potential unintended closure of mental health and IDD group homes at the conclusion of this calendar year. It is now incumbent upon all of us to do what is necessary to solve this problem. In order to ensure that our state's most vulnerable citizens are protected and allowed to remain in their homes, it is my opinion that legislative action by the General Assembly is needed. Therefore, I respectfully request that you convene a Special Session of the General Assembly under the authority granted to you by Article Ill, Section 5(7) of the North Carolina Constitution. The North Carolina House of Representatives stands ready to take immediate action to resolve this impending problem. If you should decide to convene a Special Session, you have my word that no additional matters will be taken up by the House of Representatives. We will act quickly and decisively to protect the residents of mental health and IDD group homes, and the session will end when that action is concluded. I look forward to your prompt reply. Thank you for your time and attention concerning this very important matter. Sincerely, Thom Tillis   cc: Senator Phil Berger

Crisis for those Receiving Personal Care Services

From The Arc of North Carolina

Crisis for those Receiving Personal Care Services

[ view at ArcNC.org ] 

On August 14th during the Health and Human Services Oversight Committee meeting, members of the General Assembly and others got a first look at the impact of their special provision changing the requirements for Personal Care Services for people with mental illness and developmental disabilities. What they saw was not good.

Within this year’s budget, the legislature set new guidelines on who qualifies for Personal Care Services. The changes were in response to legal action by the Center for Medicaid Services (CMS) that required the state to address comparability between in home care services and those services provided in licensed group and adult care homes. In other words, the State had to make it just as easy for someone to receive Personal Care Services in a community setting as it was to receive them in an institutional setting, as long as it costs the same or less to do so.

To meet new eligibility standards, recipients must have a medical condition, disability, or cognitive impairment. They also must require limited hand-on assistance with three activities of daily living (ADLs), or hands-on assistance with two ADLs including one at the extensive assistance or full dependence level (clinical terms). The ADLs that qualify are bathing, dressing, mobility, toileting and eating.

Tara Larsen, Chief Clinical Operations Officer of DHHSs Division of Medical Assistance, opened the presentation by reviewing the legal situation surrounding the change in PCS eligibility. She reviewed the process that the state is undertaking to evaluate all current recipients of PCS to see if they will continue to receive this Medicaid service under the new requirements. Ms. Larsen informed the members that the target date for completion of these assessments is November 30, 2012.

During the presentation, one slide stood out. That slide detailed the significant effect that this change will have on people with mental illness and developmental disabilities living in group homes and receiving PCS. According to DMA (Division of Medical Assistance), 86% of residents with I/DD in group homes will not qualify for PCS under the new rules and 100% of residents with mental illness will not qualify.

In total 12,000 North Carolinians will see their Personal Care Services eliminated under the new rules.

DHHS, DMA and the legislature has yet to articulate a response to this looming crisis. The current budget did allocate $39 million dollars to be used to assist adult care homes in transitioning their residents who do not qualify under the new rules, but that is just a fraction of the affected residential settings. For the people in mental health group homes and DDA group homes, their wait for help continues.

The Arc continues to work with DHHS, DMA, and the legislature on this imminent crisis. We will keep you informed as the situation progresses, and let you know when we fill grassroots action is needed.

DMA 8M Public Comment on CAP-I/DD 292

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 292

To: Webmedpolicy, Dma
Cc: Bradshaw, Tammie
Subject: 8M policy
Sent: Thursday, August 11, 2011 9:59 PM

DMA,

I am writing in response to the proposed policy recommendations. I own my own Case Management Company, and serve individuals in Mecklenburg, and Pathways LME. I am deeply concerned over the policy recommendations as well as recent increased activity at the State level of changes or proposed changes that will effect folks I serve. I was very involved with advocating against the recently accepted HB 916, and am now seeing my concerns being played out with this proposal, and previous proposals within the last several months. I warned lawmakers (Rep. Earle, and Insko) of the dangers of the HB, and am seeing my predictions being played out even before implementation of HB 916. I have served folks with disabilities for over 25 years, and am disappointed in DMA/DHHS (divisions that are set up to assist folks with disabilities) put out policy that actually hurts the folks they are supposed to support. I have done an analysis of some of my cases (about 5) with the proposed changes in the 8M policy from current services in their cost summary to proposed changes under the 8M policy recommendations. The outcome has been a reduction in cost/services of about 25% per client (good job state!!) without any medical justification for a reduction other than a policy change as recommended by the State. I plan on laying out my issues in this e-mail from my careful review of the 8M policy so you will better understand my concerns as well as the people I support. In an attempt to save money I believe you all have lost sight in the people that are being served. Your attempt at trying to save money by reducing or eliminating services will backfire and create more cost to the state as Families will be forced to place their disabled family members in placements that will cost the State much more money. My issues will be laid out in the following order with reference to the page number in the 8m policy so as to easily follow my point.

1) Respite for Residential Support folks (can they get Respite or not? if so why not on the same day?)
2) Elimination of Home Supports
3) Elimination of Enhanced services
4) change from "guidelines" to "Criteria" in the proposal
5) limitation of Habilitative hours to 129 H/M (30 H/W) for adults/children when out of school
6) Limitation of Habilitative hours to 86 H/M (20 H/W) for school age children
7) Limitation on hours a month for Guardians and family members to 40 H/W or 5.8 H/D

I want to start out this analysis by looking at what was written into the policy. On page 4 of the 8M policy this statement was made "The waiver, Community Alternatives Program for Individuals with Intellectual/Developmental Disabilities (CAP-I/DD) is designed to give persons with intellectual and developmental disabilities, a cost-effective alternative to care in an intermediate care facility for persons with mental retardation (ICF-MR). The goal of this funding source is to enable individuals to have a choice of living in the community instead of in an institutional setting and to have effective support in creating a preferred lifestyle that challenges each individual to live to his or her fullest potential." This I imagine is the driving force behind the waiver. If so, the 8M policy and DMA seems to forget the mission as outlined here. This statement was found on page 5 of the 8M policy that is also significant. "Person-centered planning is a process of determining real-life outcomes with individuals and developing strategies and goals to achieve those outcomes. The participant, the legally responsible person, or both direct the process and share authority and responsibility with system professionals about decisions made" (page 5). These decisions made in this policy were not made by the people that matter (the clients or their team members, but by politicians or people who are not concerned about what is best for the individual served). Another qoute I want to use from the 8M policy is from page 39 under amount and duration of service. "The amount and duration of services provided are determined through the person-centered planning process with the participant’s planning team. Services are based on the needs and priorities of the participant, the availability of other formal and informal supports, and rules of the funding source. The planning team shall ensure that medical necessity criteria are met for Medicaid reimbursement as cited in 10A NCAC 22O .0301.
Authority G.S. 108A-25(b); 42 CFR 440.230(d). In and throughout the policy you put limits on services that are in direct conflict with what is written in the policy. Amount and duration of services is determined by the participants planning team, not DMA.

Point # 1: The 8M policy is unclear on its stand as to Respite for folks recieving Residential supports. On page 11 of the 8M policy it seems to indicate that Respite would not be allowed for RS clients, but on page 94 of the policy it states that it can not be billed on the same day as RS, and then later states that it cannot be billed on the same time time as day as RS. Either way it presents problems. If totally eliminated then staff would have to pay out of pocket for Respite, and then the State would find themselves in a sticky situation because they could not mandate Staff requirements for non Medicaid payment opening themselves for a huge liablity issues and potential lawsuit if the staff have a friend do respite that may potentially abuse the client, and the staff/provider would have to say they had to do that because of state policy requirements. The other matter regards to not doing RS and Respite on the same day presents another issues. If staff provide RS for anytime during the day, and bill for it, and then have someone provide Respite the Respite will be paid out of pocket as illustrated in previous statement (huge state liability). If RS staff do services during the day, and don't bill because they want to use Respite and Respite is billed, then it becomes a labor law issue because the State is mandated staff work free if they provide RS services, and respite on the same day. This once again opens up the State for lawsuit due to policy changes.

Point #2: In the 8M policy it recommends elimination of Home Supports for individuals who live in their own home and recieve services from their Guardian or Family Member with replacement of HCS and personal care services. This is the biggest issues I have with this policy, and where most of the cuts are effected. Many individuals who recieve Home Supports do so because their Family Members have decided to quit their fulltime job to care for their loved one with a disability. Now the State wants to put an additional burden on these families because they consider them natural supports, and it is "their duty to care for their loved one" and so they decide to cut services. This puts an undue burden on the Families to provide the same quality of care with less support. Many of these Families provide this service because of past abuse by staff or because they live in an area that is hard to staff, or the individual has such intense needs no one would work with them. I will cover this in another area, but when the 8M policy limits the habilitative hours to 129 H/M, and the person recieves Day Supports (typically utilized at 30 H/W) then their is no more habilitation to be used even though the consumer needs it so Families are left to use PC, and only 40 H/W or 5.8 H/D of services. Many of these consumer require 12-20 H/D of services so this policy forces Families to care for their family members much more than they are compensated. The end result will be that Families will have to utilize other options such as institutionalization to care for their family member as they will not be able to take on the additional stress of caring for their loved one and meeting the daily responsibilites of paying their bills. This will result in cost increases at the state level.

Policy #3: In regards to elimination of enhanced services I believe that once again the State has failed to take in consideration the individual served and has decided to look at the cost savings. People recieve enhanced services primarily due to behavioral or medical issues that warrant intense need. By eliminating the enhanced services staff and/or Family will have to care for the the needs of the individual without appropriate commpensation due to the additional training required or additonial liability they take on. The long term effect will be an inabilty of providers or Family to provide well trained staff to provide services once again forcing alternative placement that will increase state costs

Policy #4: I am not clear on the differientiation between "Guidelines" and "criteria" when it pertains to limits on services. My understanding is that Guidelines are recommendations, and criteria is limits. Just need clarification

Policy #5: I have concerns that the limitation on Habilitation hours to 129 H/M conflicts with the concept of Person centeredness, and seriously effects folks recieving Home supports. 129 H/M limits folks to 4.2 H/D of habilitation of services if they recieve services 7 days a week. If folks get Day supports (typically done at 30 H/W) it would eliminate any habilitation being done at the home, only PC. This would force families, and staff in providing uncompensated work beyond what is needed to the individual. This has potential labor law issues, and rights violation issues for the State. This will directly effect adult consumers who live at home who reieve additional servcies, and will result in a cut in services. This policy recommendation also appears to comflict with other things in the policy that states that adults may recieve up to 12 H/D of Habilitative services in one day. Many of these individuals served have a treating physician stating they need more services beyond 129 H/M, and yet the State wants to limit services regardless of what the treating Physician states.

Policy #6: Regards to the Policy recommendation on Limitation of Habilitative hours to 86 H/M (20 H/W or 3 H/D) for school age children. I have concerns because it seems to conflict with other things in the policy that states kids can recieve up to 6 H/D of habilitation services (129 H/M) or other places that says they can recieve up to 12 H/D on non school days.

Policy #7: Regards to the policy Limitation on hours a month for Guardians and family members to 40 H/W or 5.8 H/D. As stated earlier this puts an undue burden on Families who have quit their jobs to care for their adult child, and are now looking at a huge reduction in services, and are expected to continue to provide supports, but under the heading of natural supports (because that is what Families should do). This Policy recommendation will seriously effect Families who provide home supports. Many of those adult individuals also recieve Day Supports, and because of the other limitation recommendation of 129 H/M these families will only be able to provide PC which in many case is not sustainable given what they gave up to care for their child forcing many members to rethink caring for their loved one in their which will result in an increased cost at the State level. I have many Family members who provide well over 10 H/D of services due to intense needs of their family members who will now be forced to resign their day jobs or place their Family members in a group home/AFL/Institution due to service limitations put forth in this policy.

I hope I have been clear in my deliberation on my concerns and issues, and my desire to support the individuals, and Families I represent. If you have any questions or need to speak to any of my families on how these policy changes will directly effect tehm please call me at 704-249-7418.

Sincerely,

Paul Peters
Owner
Covenant Case Management Services, LLC

DMA 8M Public Comment on CAP-I/DD 270

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 270

To: Webmedpolicy, Dma
Cc: R&T Gmail account
Subject: 8M-CAP-I-DD
Sent: Thursday, August 11, 2011 4:43 PM

To whom it may concern,
I am extremely concerned by the proposed changes to the CAP waiver. Please consider the following before you make any changes.

Twenty hours of habilitative care per week during the school year is not sufficient for our autistic son. The improvements in behavior, language and social skills we have seen as a result of the hab techs hard work with our son have been a blessing and are truly invaluable. A decrease in hours would be devastating to all the effort put forth by our family and his workers. I know that we are not the only family that feels this way and this strongly about this proposed change. Please do not cut these hours!!!!!

Do not remove home supports either! Our son is not yet 18, but we know other families that are relying heavily on these services for their kids. I would hope and pray home supports would be available when he is 18 to give him a chance at a better life.

I know each one of you cares about the population supported by CAP. I would hope you would not be in this job otherwise. It took our family six long years from our initial application date until our son received his waiver. It was a devastating time financially for our family from which we have not recovered as we tried to do what we could without any support. I know that these are desperate financial times for everyone in this state and in this country, but this population of people and their families are already deeply in debt and desperately need the invaluable assistance provided by the CAP waiver. I beg you not to make a stressful and difficult situation worse. The autistic population in this state had no choice when it came to being autistic. You can make a choice to support them by not changing the CAP waiver. Thank you for your consideration of our ideas on this matter

DMA 8M Public Comment on CAP-I/DD 323

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. 

[ More on DMA Public Comments. ]

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?

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.

DMA 8M Public Comment on CAP-I/DD 266

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 266

To: Webmedpolicy, Dma
Subject: Home Support Program
Sent: Thursday, August 11, 2011 3:28 PM

To Whom It May Concern:

I am writing to voice my support of keeping the Home Support Program as it is. I have read the draft proposal, and am not pleased
with it.

My son is 21, he will be 22 in November. I started on the Home Support Program April 1, 2011. It has been a godsend. I finally knew
I could be at home with my son and provide him one-on-one care. Because of his goals, there is work involved. It is not like just keeping
him at home. I must now be his mom, his teacher, and his therapist.

I quit a job to do this for my son, for myself, for my family. I am a single mother. Now I might have to try to re-enter the workforce. How?
I would have to take whatever you give me, lose my car, lose my credit that I've just spent 2 1/2 years re-building, because when can I interview? Take him with me? Collect unemployment? Again, how? He will be at home, I can't leave him by himself. Or should I give up and let the
government provide inadequate care for him that will cost at least 5 times what I'm getting paid?

When my son was diagnosed with Dandy-Walker Cyst Syndrome almost 20 years ago, very little was known about it. (In fact, I still have only met
1 person who has a child with it. Now web-sites have been established for support.) Because I have been a single parent, and Randy has been on Medicaid since 1994, I had to remain poor to keep him on it. I couldn't get a raise, overtime, married, have anyone live with me, and when my older children turned 16, they couldn't get their 1st jobs. We all have suffered. Putting him in a home probably would've been easier, it probably still
would be easier, however having children is not about doing what's easier for you, it's what's best for them.

The worst part was, and is, knowing that at least one of my children will not survive me. He is under 5' tall, he barely weighs a hundred pounds, he
doesn't talk, doesn't walk by himself, is tube-fed, wears diapers and takes 3 anti-seizure drugs twice a day. The seizures started almost 4 years ago.
I believe that was the beginning of the end.

All I wanted was to be able to stay at home and take care of him, to not have to put him in a state run home. I want him to be cared for one-on-one, I want him cared for by someone who truly loves him, I want him to be happy every day. There's only one way that can happen, if he remains home
with me. And there's only one way for that to happen, keep paying me $500/wk, I can't afford anything less. It's still below the poverty line, it still saves the state over $100,000/yr per "client".

I don't understand the issue. This program should be expanded, not eliminated or reduced, and that's what this proposal does. It eliminates the Program that saves the state, what over $1 million, maybe billion per year, and incorporates it into another program that pays less. When the other
program should be modified to fit into the Home Support Program. If you get Home Support, you should not get any other services except Respite. Respite hours could be reduced from 576 hours per year to 416 hours per year, which would save the state the same amount of money as changing the Home Support Program.

Please, let me keep my son at home where he is happy, and healthy.

Thank you,

Judi H.

Medicaid Reforms May Leave Developmentally Disabled in the Cold

Note: highlights, links, italicized quotes as well as comments in *purple are entirely my own mark-up and not reflective of the author nor original posting, link below. 


--For more information in a detailed outline with supporting documents regarding critical issues facing NC's DD populations and families, CLICK HERE. 


This is why we MUST PAUSE!

Medicaid Reforms May Leave Developmentally Disabled in the Cold

Unintended consequence of 2011 law to improve treatment of mentally ill

By Barry Smith
Jun. 11th, 2012

[ Original article from Carolina Journal Online ]

RALEIGH — Developmentally disabled North Carolinians could slip through the cracks as mental health services across the state transition into a new health care delivery system.

Advocates for developmentally disabled patients fear that thousands of patients might lose case management services as local and regional mental health organizations (often called local management entities, or LMEs) begin implementing a managed care system of health care delivery. Time is running out for lawmakers to make the statutory changes if they want to fix the problem before the transition is complete the first of the year.

People with developmental disabilities include people with autism, cerebral palsy, Spina bifida, Down’s syndrome, and intellectual disabilities.

A law that passed last year changes the delivery of patient care to Medicaid recipients of mental health, developmental disability, and substance abuse services. The effort seeks to expand a service-delivery model employed by Piedmont Behavioral Health Services, headquartered in Cabarrus County, statewide.

Lawmakers hope the change, when complete, will result in increased efficiencies for the Medicaid-related services.

The primary emphasis of the new law was to improve services for the mentally ill. But in what may have been an unintended consequence of the legislature’s actions, advocates for the developmentally disabled worry that the patients and families they serve may have been overlooked.

Julia Adams, assistant director of government relations for The Arc of North Carolina, said that case management is key to making sure developmentally disabled patients and their families get the health care and support services that they need.

Case managers are “experts in understanding the needs of this specific community and how to best help this community,” Adams said, noting that a lot of people with developmental disabilities often have difficulty figuring out the complexities of their care on their own.

Adams said that approximately 6,000 such patients could slip through the cracks.

While a handful of area mental health organizations already have made the move to the new managed care model, most have not. However, state law requires all of them to shift to the new model by Jan. 1, 2013.

*Whoa Nelly! WE ARE NOT READY.

Patients and family members already are reporting problems they’ve encountered from the changeover in some parts of the state.

Jane Lindsey, whose 21-year-old child suffers from a number of disorders, has encountered problems getting a psychiatrist for her child.

Lindsey’s family took guardianship of their child when she was 4 months old.
“She was a shaken baby,” Lindsey said. The adult child sees about 12 different specialists. “She has three immune disorders,” Lindsey said. “At times, she can have a list of 40-plus medications.”

Lindsey, who lives in Hendersonville, said that on Feb. 14, when her child was headed home from a doctor visit, she experienced a panic attack. Despite having numerous meetings with and calls to area officials, Lindsey has been unable to get a psychiatrist to see her child for clinical intervention.


Procedures stipulate that the managed care entity must authorize such services before they are delivered.

“According to her neurologist, if she continues to have these panic attacks, she will die,” Lindsey said.

Targeted management had been provided by for-profit and nonprofit private organizations. Those businesses will close down, Adams said. She said 150 people within the Arc of North Carolina will no longer work for the private sector.

*Small agency owners and providers - some of the best, most honorable, passionate professionals in the field - are being set up for failure! 

Jim Jarrard, deputy director of the state Division of Mental Health, Developmental Disabilities, and Substance Abuse Services, said that responsibilities of former case management workers will be divided among care coordinators and community guides.


*Care Coordinators will be accessible via central call center (unless there has been a recent change?) while the minimum qualifications for Community Guides include: 18 years of age, high school diploma, and valid NCDL.

While the new coordinators and guides won’t be as “robust” as the former case managers, Jarrard said that “they certainly help you navigate the system.”

Jarrard said he understands the concerns that have been raised about case management. “We’re trying as hard as we can to try to allay fears,” Jarrard said. “I think change is always hard for people.”

*Mr. Jarrad: We are NOT afraid of change; our lives ARE change... this is not our first rodeo. --We are afraid of losing wonderful staff who are payed nothing for the jobs they do; of losing the invaluable support of case managers we've built trusting relationships with; of having to quit our jobs to fill in gaps that shouldn't be there; of not being able to care for the children we love AND survive; of having to surrender our children to salvage the rest of our family members... 


And we're afraid no one is listening  - and too little too late is just too much to risk our lives for.

Adams counters that fear of change isn’t the problem. “People are actually getting into crisis because the system is not functioning,” Adams said.

Adams said she is working with lawmakers in an effort to make sure developmentally disabled patients get the treatment plans and service referrals they need.

Two legislators — Sen. Ralph Hise, R-Mitchell, and Tom Murry, R-Wake — said they are working on legislation to resolve the problem.

“We know what we want to do,” Murry said. “We’re just trying to see if we can get it done in the time remaining.”

“We’re in the drafting process,” Hise said. But he noted that Senate committees are shutting down and legislative leaders have set a June 19 target date for adjournment.

Adams said the changes need to be made this session, and if legislators believe it’s a priority, it can be accomplished.

“I think they need a green light from the leadership,” Adams said.

If they wait until the 2013 session, which would start in late January, case management services would have already ceased, she said.


*Why are we in such a hurry to race this through haphazardly? Shouldn't we want to make absolutely, positively certain that this is done RIGHT? That no one falls through the cracks? That no one ends up with egg on their face and the State is not opening itself up to more federal lawsuits and yet another DOJ investigation? 


“By the time the fix comes, there may be nobody left to work with these people,” Adams said.

*What if this were your child? Would you leave these issues hanging 'til next session?

Barry Smith is an associate editor of Carolina Journal.