Showing posts with label home supports. Show all posts
Showing posts with label home supports. Show all posts

06 August 2012

WRAL re NC MH Reform & Parent Info.

WRAL report re Managed Care and IDD, etc.
1 message


MaryKShort@aol.com <MaryKShort@aol.com>Sun, Aug 5, 2012 at 11:15 AM
To: MaryKShort@aol.com

FYI ... very well written and researched article by Mark Binker at WRAL.com.  I can see that there are a lot of good talking points to use when you contact your elected representatives to express your concerns or your experiences. 


In the article, a Ms. Laurie Haley is quoted:  Laurie Haley has seen ups and downs as North Carolina has slogged through mental health reform efforts over the past decade. For a three-year period from 2005 through 2008, she said, reform seemed to have worked for her daughter, Alissa. Other times, dealing with local and state mental health bureaucrats was more fraught.

That period of time covers the pre-Home Supports service definitions.  I happen to agree totally with her EXCEPT for the fact that it was at the end of 2007 and into early 2008 when the state first tried to implement the 40-hour limit!  I don't know if she was impacted by that at the time or if she even knows it is part of the Innovations waiver.  I have written the reporter to ask.

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


Posted: 7:09 p.m. Friday (August 3, 2012) Updated: 12:11 a.m. yesterday

Patients, advocates wary as NC again reforms mental health system

By MARK BINKER, WRAL.com Multimedia Reporter


Raleigh, N.C. — North Carolina is in the midst of an effort to remake the state's public safety net for those with mental health, substance abuse and developmental disabilities.

Lawmakers, administrators and taxpayers want to see if the change to a "managed care" model can really save millions of dollars and avoid the over-spending debacles that marked the first system remake a decade ago.

At stake is how the North Carolina manages more than $2.4 billion in state and federal mental health dollars that flow through local mental health agencies, and how individuals with mental illness will live their lives every day.

"All I want to do is keep my daughter at home," said Laurie Haley.

For her, reforms success or failure will be measured by how it affects her daughter, Alissa. The 27-year-old woman has severe developmental disabilities and also suffers from seizures. Alissa needs help dressing, eating and taking care of other needs. Those who help her need to be able to administer medicine and prepared to act in case a seizure makes her fall in the shower or comes on her in public.

Haley says that she has, for now, ensured that the transition to managed care won't mean fewer services for her daughter. But she said other families making the switch are still encountering problems.

"What I'm hearing is that they're still trying to reduce services for people," Haley said.

That small-scale skepticism of the new system was amplified this summer when a blistering report said that one of the first local mental health authorities given permission to make the transition was not ready for the switch to managed care.

State and local mental health administrators say that one experience should not color the entire transition effort and that the system is on the road to improvement. Advocates, some who work providing services to clients and even some lawmakers say the process may be moving too fast. They worry that counties such as Wake and Durham, which have just begun the move toward managed care, could encounter the same mistakes and problems seen elsewhere.

...

[ There's much more... Read the Full Story on WRAL.com ]

And while statewide success will be measured in millions of dollars, Haley and others like her will measure it in terms of what it means for their loved ones.

"My daughter is not a disability, she's a human being with a disability," Haley said. "If I have the right to live at home and you have the right to live at home, she should too."

----------- more from Mary Short...

EXTRA:  Mercer Report link
2ND EXTRA:  Federal Report link and quote from that report

C. Health, Safety and Quality

Abuse, neglect, exploitation, the use of mechanical and chemical restraints, unexplained injuries and denial of services are far too prevalent in our current long-term system of services. CMS has made significant strides in holding states accountable for addressing health and safety issues in the 1915(c) Medicaid Home and Community Based Waiver program; but requirements governing program design, state monitoring and reporting to CMS have not been mandated for managed care programs approved under Section 1115 demonstration waivers or under the dual eligible pilot demonstrations.
3rd EXTRA:  Other news reports from Raleigh sources regarding other budget cuts and budget overruns

http://projects.newsobserver.com/under_the_dome/mental_health_office_needs_lots_of_work_consultant_says#storylink=cpy
Submitted  by lbonner on 2012-07-26 14:37
Under the Dome | mental health | N.C.  Department of Health and
Human Services | Western Highlands  Network

Last week, we wrote about a local mental health office that  covers
western North Carolina counties losing $3 million since switching  to
managed care in January.

A consultant's report issued this week  describes problems at Western
Highlands Network, one of the first local  mental heath offices to
convert to a managed care system.

Among other  things, the report says that the information Western
Highlands leaders  receive about services, use and costs is inadequate,
and that it is not  keeping good track of Medicaid claims.

The report goes on for nine pages.  In short, it says Western Highlands
needs lots of improvements, and the  consultant recommends close
monitoring by the state Department of Health and  Human Services.

Under managed care, the local mental health office gets a  set amount
of money to treat mentally ill patients who rely on Medicaid or  state
funds.

Western Highlands Network became a managed care  organization in
January. By next January, managed care organizations  for
government-paid mental health services will cover the entire  state.
And ... news article re WHN & Mercer Report is in it and easy to read!

25 June 2012

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?

24 June 2012

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.


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.


23 June 2012

DMA 8M Public Comment on CAP-I/DD 257

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 257

To: Webmedpolicy, Dma
Cc: Marty Johnson; marysam@westernhighlands.org
Subject: comment on cap changes for I/DD
Sent: Thursday, August 11, 2011 1:35 PM

To whom it may concern,

The changes that maybe made to CAP for l/DD will greatly impact my "son'. Especially, the changes to Residential. lf the changes go into effect, my wife and I will probably have to seek ICF/MR placement for him.
This is a long story. My "son" came to live with us when he was five. He had already been assessed at Amos cottage in Greensboro twice which recommended that he be institutionalized. The foster home that he was in could only contain him by locking him in his room. He came to us with CAP services and we were his foster parents. During the first eighteen months, we had a habilitation worker for 6 non-consecutive months. No afterschool or summer program would work with him without a worker. Both my wife and I were taking off work to cover his care which started to put us in trouble at work. At this point, the local Area Program helped my wife to become his CAP provider. This solved the
problem for us for a long time. Our "son" made a great deal of progress. We had wanted to adopt him, CAP made several back and forth decisions on parents providing CAP services for their children. And given our experience with not being able to keep CAP workers(which put our jobs at risk), we decided not to adopt him to be able to continue to have him live with us. I could not see giving him our name, if he then had to live outside our home. Overall CAP has worked well for him and made a different prognosis from the earlier one possible. When my "son" became a teenager, it became necessary for my wife and I to switch roles. She now works outside the home and I work with my "son". My "son" has autism and mental retardation. And despite medical intervention, he does not sleep through the night. When he gets up, I have to get up with him as he willget into the kitchen, etc. without regard to his safety.
The proposed changes to residential with limits to day supports and respite v0ill impact us greatly. I have experienced working around the clock with our "son" during the last three summers of high school when no summer programs where available or would take him because of his activity level. When he left school and started a year round day program with day supports, lwas able to recover from being worn out. Now I am able to prepare for my "son" while he is at the day program.
For many years we had a couple who provided overnight respite for our "son" in spite of his not sleeping. But two years ago, they had to stop. Since then I have had one ovemight break, despite numerous requests for service providers. To keep going I have used hourly respite during the day to take a break. Without this it will be difficult to keep going and will place a financial hardship on our family.

Thank you for listening.

Martin J.
Asheville, NC

22 June 2012

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.


05 June 2012

Parent Perspective & Legislative Correspondence

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! Below is her mail to her parent list (in blue) which includes her 6/4 legislative correspondence regarding the 8M Clinical Coverage Policy proposals and Public Comments to DMA. 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.

Parent Perspectives 

and Legislative Correspondence

From:  Mary K. Short  June 5, 2012
Hello all. As I have been trying to stop the further implementation of the NC Innovations waiver, one of the things I have repeatedly told the Members of the NC General Assembly (NCGA) is that the Department and Divisions DO NOT LISTEN TO FAMILIES. One of the things that had been bothering me is the fact that "Proposed Clinical Policy 8M CAP-IDD" was never posted to the DMA web site as approved. You should recall that it was posted for public comments twice, for a 45-Day period (May 12, 2011 - June 26, 2011) and then again for a 15-Day period (July 28, 2011 - August 11, 2011). The 15-Day comment period was when Home Supports was eliminated! I submitted a Freedom Of Information Act request (FOIA) and after some delay by the Department and Divisions, I did actually receive the documents! They sent me Word file documents of ALL the public comment they received. The links below are to those documents. PLEASE BE AWARE THAT I HAVE NOT REMOVED ANY INFORMATION FROM THE PUBLIC COMMENT DOCUMENTS. They contain email addresses, addresses, phone numbers, WHATEVER was submitted is what was released. I have not edited the information in any way.

https://www.sugarsync.com/pf/D6195569_4698706_718588 (Part 1: 539 pages; 439 comments; 15 day comment period.)

https://www.sugarsync.com/pf/D6195569_4698706_718581 (Part 2: 79 pages; 101 comments; 45 day comment period.)

They are tremendously moving to read. I want to thank every single family who submitted comments. I want to add that MOST of the comments are NOT from people who are directly on my email list. I know some of you forward my emails, and so, I want to thank you for doing that. I don't care if the comments are from my email group or members of The Arc or UCP or Case Management providers or service providers, whoever, I am just thankful for the families who did comment. Except for two that I remember, they were in COMPLETE AND TOTAL OPPOSITION to the elimination of Home Supports, the implementation of a 40-hour policy, and opposed denying the use of Respite on the same day as Home Supports or Residential Supports.

After having all of it printed and READING EVERY SINGLE PAGE, I sent the following email:

From: MaryKShort@aol.com
To: Governor Beverly Perdue <governor.office@nc.gov>, 
Senate President Pro Tempore Phil Berger <Phil.Berger@ncleg.net>, 
House Speaker Thom Tillis <Thom.Tillis@ncleg.net>, 
Senator Louis Pate <louis.pate@ncleg.net>, 
Representative Justin P. Burr <justin.burr@ncleg.net>, 
Representative Nelson Dollar <nelson.dollar@ncleg.net>, 
Representative Martha Alexander <martha.alexander@ncleg.net>, 
Representative William Brisson <william.brisson@ncleg.net>, 
Representative William A. Current, Sr. <bill.current@ncleg.net>, 
Representative Mark W. Hollo <mark.hollo@ncleg.net>, 
Representative Pat B. Hurley <pat.hurley@ncleg.net>, 
Representative Bert Jones <bert.jones@ncleg.net>, 
Representative Marian McLawhorn <marian.mclawhorn@ncleg.net>, 
Representative Tom Murry <tom.murry@ncleg.net>,
Representative Fred F. Steen, II <fred.steen@ncleg.net, 
Senator Austin Allran <austin.allran@ncleg.net>, 
Senator Doug Berger <doug.berger@ncleg.net>, 
Senator Stan Bingham <stan.bingham@ncleg.net>, 
Senator Harris Blake <harris.blake@ncleg.net>, 
Senator Jim Davis <jim.davis@ncleg.net>, 
Senator Fletcher Hartsell <fletcher.hartsell@ncleg.net>, 
Senator Eric Mansfield <eric.mansfield@ncleg.net>, 
Senator Martin L. Nesbitt, Jr. <martin.nesbitt@ncleg.net>, 
Senator William R. Purcell <william.purcell@ncleg.net>,
Senator Tommy Tucker <tommy.tucker@ncleg.net>, 
Senator Andrew C. Brock <andrew.brock@ncleg.net>, 
Senator Ralph Hise <ralph.hise@ncleg.net>, 
Joint Caucus Leader Marilyn Avila <marilyn.avila@ncleg.net>, 
Representative Rayne Brown <rayne.brown@ncleg.net>, 
Representative Tricia A. Cotham <tricia.cotham@ncleg.net>, 
Representative Beverly M. Earle <beverly.earle@ncleg.net>, 
Representative Shirley B. Randleman <shirley.randleman@ncleg.net>, 
Representative Mitchell S. Setzer <mitchell.setzer@ncleg.net>, 
Representative Tim Moffitt <tim.moffitt@ncleg.net>
CC: MaryKShort@aol.com
Sent: 6/4/2012 7:34:52 A.M. Eastern Daylight Time
Subj: Public Comments to 8M Clinical Policy - links provided

Dear Gov. Perdue, Sen. Berger, Speaker Tillis, and Members of the NCGA:

On 04072012 I sent a Public Records request to DHHS. I have no idea why there was a problem with getting it to the right person. That FOIA (Freedom Of Information Act) request was for ALL of the public comments that were submitted to DHHS/DMA for Proposed Clinical Policy 8M CAP-IDD. There were two comment periods. May 12 - June 26, 2011 (45 days) and July 28, 2011 - August 11, 2011 (15 days.)

In a phone call with Susan E. Johnson at DMA on 05082012, she told me she had compiled and sent that 8M public comment information to DHHS. (Additionally, on 05082012, I emailed her requesting the "best practice documentation" for the family as provider 40 hour policy. However, as of today, I still have NOT received the best practice documentation. I followed up with her on 05172012 and her reply on 05182012 was that she had asked DHHS to assist her.)

Brad Deen, DHHS, spoke with me at the MCAC (Medical Care Advisory Comm.) Meeting on 05182012 and told me he had sent the documents to a different Mary Short email address. I was confused by that since I had made the request in an email to begin with. I gave him the correct information and he said he would send it. When I had not received the information by 05292012, I tried email again. Two emails and a phone call later, I received the documents on 05292012. They are in Word. I have provided links to the documents rather than attaching them to this email.

https://www.sugarsync.com/pf/D6195569_4698706_718588 (Part 1: 539 pages; 439 comments; 15 day comment period.)

https://www.sugarsync.com/pf/D6195569_4698706_718581 (Part 2: 79 pages; 101 comments; 45 day comment period.)

When we were in Raleigh on 05302012 and 05312012, I had the documents on a thumb drive with me and I told as many legislators as I could about what was in the documents I had barely had a chance to read. Sen. Daniels' LA, Andy, downloaded the documents. I have sent them as email attachments to some other people, too. Additionally, I have sent them to the HHS/OCR attorney in Atlanta who has been assigned my (our) complaint because I specifically complained about 8M and that DHHS/DMA/DMH not listening to the comments.

On Friday, 06012012, I had both documents printed out. Over the weekend, 06022012-06032012, I did read every single page. There were two comments in favor of the proposed changes, both from LME/MCO's. Mothers, fathers, brothers, sisters, aunts, uncles, cousins, grandparents, or any other family relation you can imagine, all wrote to beg that DMA not change the CAP-IDD(MR/DD) waiver by eliminating Home Supports or limiting families to 40 hours a week. These are very, very compelling comments. Agencies, such as The Arc or UCP or ASNC (Autism), all wrote to oppose the elimination of Home Supports or to oppose the 40 hour limit. And yet, DMA did just that. You must be wondering, just as I am, why it is that if there are 1,091 +/- parents performing Home Supports in all of NC and 500 comments were received in opposition to the elimination of Home Supports or the 40 hour policy, then why would DMA do it? I sincerely believe it is because they are simply mean-spirited. There is no logical reason to believe otherwise.

I have spent time and effort in an attempt to convince you that there is a problem at DHHS/DMA/DMHDDSAS. I don't know what it is you need to have in your hands in order to believe me and in order to take any action to stop the further expansion of the 1915(b)(c) waivers and more specifically, the 1915(c) NC Innovations waiver. Please. The PBH pilot of the Innovations waiver INCLUDED its own HOME SUPPORTS service definition. It was just in July of 2011 that the NC Innovations waiver eliminated Home Supports and implemented a 40 hour policy. The NC Innovations waiver that is being expanded is NOT the Innovations waiver that was piloted by PBH all those years.

The fact the CMS has approved any State Plan or State Plan Amendment or Waiver is NOT proof that what DHHS/DMA/DMHDDSAS has done is legal. You all are acutely aware of the DOJ findings with regard to ACH/IMD and Personal Care Services. The fact that there is a pending lawsuit (K.C. v NCDHHS, PBH, et al.) brought against PBH after the changes to the piloted Innovations waiver is also proof of some level of disregard of the PEOPLE impacted by the Innovations waiver.

The financing of this waiver through a capitation formula which results in a month to month variable check to the LME/MCO's rather than an annual appropriation by the NCGA which always allowed for growth (moving people off of the wait list and into direct services) is flawed or a sham, or both!

The fact the MONEY has been spent by LME/MCO's on this expansion is not an argument to continue the expansion. Clearly, DHHS/DMA/DMHDDSAS has wasted millions of dollars in the past on policies or programs that have failed. Those live human beings in the IDD community are simply the least able to recover from another DHHS/DMA/DMHDDSAS "failed" policy.

Please stop the further expansion of the NC Innovations waiver. Thank you all, again.

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

I have not given up in any way. Because the public comments are public documents, you can forward the links to anyone you choose.

Finally, I want to address the issue of "our" information being public. I am sorry if any of you did not want your information released, but the DMA web site is very clear that the information that is given as a public comment can, in fact, be released as a public document. I am hopeful that all of us feel it is more URGENT and IMPORTANT to speak out against these changes, than to be silenced by the threat that our information may be made public. Of course, you can always sign up for a gmail or yahoo email account rather than using your "real" email account to send "public comment" from!

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