Speaking Notes from 6/8 I/DD System Leadership

Earlier last month, June 8th, I attended the NC Behavioral Health and I/DD System Leadership Congress at UNC Chapel Hill with the Jordan Institute for Families and spoke as a consumer parent. 

This leadership "summit" as I like to think of it, was an brilliant idea and effort to bring together all the powers that be in North Carolina's Mental Health, Developmental Disabilities, and Substance Abuse Services systems for a day of laying aside our egos and finding common ground. Among the rules: "No shame, No blame, and No enemies"...

It is my understanding that the late Steve Jordan, Director of North Carolina's Division of Health and Human Services, was instrumental in manifesting this vision.

Below are my speaking notes from that day...

I'm proud to say there were many tears as I walked away from the microphone, followed by numerous hugs. --Those tears gave me hope... It is our humanity that connects us and without that, we are all lost.

Speaking Notes

When I was invited to participate in this “summit” – a gathering of intelligent minds and caring souls for an active listening dialogue toward a common good, I thought, “What a novel idea!” and so wore today the closest thing I own to bellbottoms! So please pardon my casual appearance; it is my day off. –I understand we’ll be roasting marshmallows afterwards.

Rather than tell MY story, I’m going to do something a bit different. 

I’m going to tell A story…

Could our video guys please dim the lights a little; as low as you can still record?

Thank you.

Most of you raised your hands at the beginning when asked if you knew someone or had someone in your family affected by mental health issues. Most of you are probably parents as well.

Think of these people now: those you know and your own children…

Let’s take just a moment here to STOP… 

I’d like for you each to close your eyes… take a deep breath and imagine, just for a brief instance, that you are not a State Director nor Department Representative, not a Policy-maker nor LME, nor Provider; you’re not an elected official, not a politician, nor even a party affiliate – it’s not that you don’t care what’s going on in the world around you, but your world demands all of your time and energy... 

You are only an expert in what you know: your life, your family, your children.

Imagine that you’re just an average North Carolinian living paycheck to paycheck trying to be the absolute best parent you can be providing for a child you never anticipated; a child you would give your life for just to hear them speak the words, “I love you.” 

You juggle all your time between coordinating and attending appointments with doctors and specialists and therapists, attending IEP, ESY and CNR meetings and a whole host of other acronyms, working to provide for your family, feeling guilty over the lack of “normalcy” and opportunity left over for siblings, researching special education law and medical issues, catching up on missed work, catching up on missed life, neglecting your own needs, networking with other parents searching for answers and sharing resources, learning sign language, physically caring for your special child, giving injections, changing g-tubes and adult diapers, and fighting for their rights – against the school, against the county, against a library that discriminated against your child, against the State who threatens not just their livelihood and quality of existence… but the very ability to LIVE.

You pray, you cry, you curse, you question… and you pray and cry some more.

You stopped thinking long ago about providing a better life for him or her than you once had; you only want what’s right and just and to not have to wake every single morning wondering that which haunts you to your core, “What would happen to my child if something happened to me?”... Just for a second, please imagine, please consider, what if this were your child? 

And this is only a tiny intimate glimpse into one perspective among many, many distinctly unique personal challenges and needs. There are countless more individual lives with different experiences, different abilities and different needs – as different as our own fingerprints.

I maintain – the Human Element is missing. In the shared passion and determination to make a difference, we have lost sight of our reason for being here. THAT is our disconnect. And the human element is what connects us ALL.

We are NOT afraid of change. Our lives ARE change.

What we’re afraid of is FAILURE:

• Of failing the potential and purpose of each and every individual, regardless of need or ability. 
• Of failing Ourselves. 
• Of failing the children who emanate love and spirit unconditionally and at the end of the day, keep it real. 
• Of failing those we love and care far: 
• Who are fragile, 
• Who are in need, 
• Who are struggling to maintain, 
• Who desperately DESIRE to BE, 
• Who are INTENDED to BE. 

We are ALL INTENDED to BE.

Everyone has something to teach… My daughter Isabel is my greatest teacher.

What can we learn from one another? 

We are ALL EXPERTS in OUR OWN LIVES and it IS PERSONAL.

And NONE of us can afford NOT to get this right on this level of magnitude…

How do we fix it?

Thank you.

Crystal J. De la Cruz - Hopper 

Special Mom, DD Advocate, & Concerned NC Citizen 

June 8, 2012 Leadership Congress

SB 191 v 4: LME Governance

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: andrew.brock@ncleg.net, austin.allran@ncleg.net, dan.soucek@ncleg.net, doug.berger@ncleg.net, eric.mansfield@ncleg.net, fletcher.hartsell@ncleg.net, james.forrester@ncleg.net, jim.davis@ncleg.net, louis.pate@ncleg.net, martin.nesbitt@ncleg.net, ralph.hise@ncleg.net, stan.bingham@ncleg.net, tommy.tucker@ncleg.net, william.purcell@ncleg.net
CC: bert.jones@ncleg.net, beverly.earle@ncleg.net, bill.current@ncleg.net, fred.steen@ncleg.net, harris.blake@ncleg.net, justin.burr@ncleg.net, marian.mclawhorn@ncleg.net, marilyn.avila@ncleg.net, mark.hollo@ncleg.net, martha.alexander@ncleg.net, nelson.dollar@ncleg.net, mitchell.setzer@ncleg.net, pat.hurley@ncleg.net, rayne.brown@ncleg.net, shirley.randleman@ncleg.net, tim.moffitt@ncleg.net, Tillisla@ncleg.net, tom.murry@ncleg.net, tricia.cotham@ncleg.net, william.brisson@ncleg.net, MaryKShort@aol.com, Candace.SlateRep.Dollar@ncleg.net
Sent: 6/28/2012 10:43:35 A.M. Eastern Daylight Time
Subj: SB 191 v 4: LME Governance


To all: Dr. Porter wrote a dissertation in response to my email to you all. Her statement that the courts have somehow ruled against "family guardians" is a willful misrepresentation of the issue. She states:

"... the district court ruled that it was not in the best interest of the citizen for the agency that managed their service money also served as their guardian."

Please. Family guardians do no NOT manage their ward's service money! Just take out (f). It's not in existing guardianship laws now and it just doesn't need to be in there at all at this time. Again, study it, have hearings, etc. Just please take it out of SB 191 v 4.


And just so you all know, please see the email below. I added the RED.

From: Goda, Deborah A [mailto:deborah.goda@dhhs.nc.gov]
Sent: Tuesday, June 26, 2012 2:12 PM
To: Creative Case Management
Cc: Crosbie, Kelly
Subject: RE: [SMC Communication] Monday June 25, 2012 (SMC Communication: #80) 

Good afternoon, Kathy. 

The applications are for Relative and/or Legal Guardians. The provider of Residential Supports may be the Legal Guardian in an Alternative Family Living Arrangement; please note that this an out of home living situation.
Please let me know if I can be of further assistance. 

Deb Goda 

IDD Services Consultant
Clinical Policy
DMA
919-855-4297
deborah.goda@dhhs.nc.gov

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

In a message dated 6/27/2012 5:03:20 P.M. Eastern Daylight Time, Candace.SlateRep.Dollar@ncleg.net writes: 

From: Patricia Porter (Mental Health)
Sent: Wednesday, June 27, 2012 04:54 PM
To: 'MaryKShort@aol.com ' 

Cc: Rep. Nelson Dollar; Sen. Andrew C. Brock; Sen. Austin Allran; Sen. Dan Soucek; Sen. Doug Berger; Rep. Mitchell Setzer; Rep. Pat Hurley; Rep. Rayne Brown; Rep. Shirley B. Randleman; Rep. Tim Moffitt; Joe Nolan (Rep. Tillis); Rep. Tom Murry; Rep. Tricia Cotham; Rep. William Brisson; Sen. Eric Mansfield; Sen. Fletcher Hartsell, Jr.; Sen. Jim Davis; Sen. Louis Pate; Sen. Martin Nesbitt; Sen. Ralph Hise; Sen. Stan Bingham; Sen. Tommy Tucker; Rep. Beverly Earle; Rep. Bill Current; Rep. Fred Steen; Sen. Harris Blake; Rep. Justin P. Burr; Rep. Marian McLawhorn; Rep. Marilyn Avila; Rep. Mark Hollo; Rep. Martha Alexander; Sen. William Purcell; Rep. Bert Jones 

Subject: RE: SB 191 v 4: LME Governance 

Hello Ms. Short, 

Your message has been forwarded to me for reply. 

As you know, in the original Local Management Entity(LME) Governance legislation language ( H1075) passed by the House, Guardianship was addressed in detail. The DHHS requested that we insert this clarifying language in that the courts had ruled that the LME/MCOs could no longer serve as guardians for people with mental illness, developmental disabilities or substance abuse disease due to a conflict of interest. While these LMEs had served for many years in this capacity, the district court ruled that it was not in the best interest of the citizen for the agency that managed their service money also served as their guardian. 

Taking the lead from the courts the state has moved to protect against conflict of interest. The state has an abiding interest in assuring that adults who receive services are provided with guardians who are not also responsible for being the paid provider of services. This prohibition has been in the Guardianship language in H1075 from the beginning.
Wisely, the DHHS called attention to the fact that there are about 200 parents of people with developmental disability who have elected to become paid providers of services for their adult children. Many of these parents, such as yourself, also serve as guardian for their adult child. In an effort not to disrupt this arrangement, the General Assembly amended the Guardianship language to designate paid parent service providers as exempt from this conflict of interest prohibition. 

In further discussion by the House HHS Committee, members posed the possibility of other family members being in a potential conflict of interest. In an effort to address this concern, while continuing to protect the best interests of adults with disabilities in the state, an amendment was proposed that will allow all immediate family members of an adult consumer who, before Jan 1,2013 are serving as both paid service provider and guardian to be able to continue to do so. However, there is also a recognition that this situation deserves more scrutiny. Accordingly, the provision that you have included in your message was provided to the House yesterday and that body voted in support of it. To formalize the process for review of this issue, a technical amendment was added to the budget bill today directing that a study of Guardianship will be added to the list of items for review by a subcommittee to be established by the Joint HHS Oversight Committee during the interim before the long session. This amendment can be found under Section 10.11 (a). Contrary to your assertion that this had not been a well thought out process, the General Assembly wants to make sure that knowledgeable individuals can carefully review the facts about this issue and come to a set of recommendations that will guide future actions on this issue. 

I hope this is helpful to you. Please let me know if I can provide additional assistance. 

Pat Porter 

Patricia Porter, PhD, Consultant
Health and Human Services
North Carolina General Assembly
301-B Legislative Office Building
300 N. Salisbury Street
Raleigh, NC 27603
(919)301-1982

From: MaryKShort@aol.com [mailto:MaryKShort@aol.com]


Sent: Wednesday, June 27, 2012 12:58 PM
To: Sen. Andrew C. Brock; Sen. Austin Allran; Sen. Dan Soucek; Sen. Doug Berger; Sen. Eric Mansfield; Sen. Fletcher Hartsell, Jr.; Sen. James Forrester; Sen. Jim Davis; Sen. Louis Pate; Sen. Martin Nesbitt; Sen. Ralph Hise; Sen. Stan Bingham; Sen. Tommy Tucker; Sen. William Purcell
Cc: Rep. Bert Jones; Rep. Beverly Earle; Rep. Bill Current; Rep. Fred Steen; Sen. Harris Blake; Rep. Justin P. Burr; Rep. Marian McLawhorn; Rep. Marilyn Avila; Rep. Mark Hollo; Rep. Martha Alexander; Rep. Nelson Dollar; Rep. Mitchell Setzer; Rep. Pat Hurley; Rep. Rayne Brown; Rep. Shirley B. Randleman; Rep. Tim Moffitt; Joe Nolan (Rep. Tillis); Rep. Tom Murry; Rep. Tricia Cotham; Rep. William Brisson
Subject: SB 191 v 4: LME Governance


I DO NOT AGREE with the proposed language found on page 8, (f) regarding Guardians and parents and other family members. I urge you to simply delete it ALL. I do AGREE with there being a "study" to determine what should happen going forward, but that the NCGA should leave well enough alone UNTIL AFTER THE STUDY! This is all too rushed and not heard or debated in committee or committees.


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

From: MaryKShort@aol.com
To: MaryKShort@aol.com
Sent: 6/27/2012 12:38:46 P.M. Eastern Daylight Time
Subj: URGENT TODAY: Language change re Guardians!

Here we go! The NCGA changed the LME Governance bill number from HB 1075 to SB 191. You need to care about this because NEW LANGUAGE WAS ADDED ABOUT GUARDIANS AND FAMILY MEMBERS WHO ARE ALLOWED TO BE PAID TO PROVIDE SERVICES. My comments are inserted in blue, after the sentence in question.


What this says is that after January 1st, 2013, NO FAMILY MEMBER WHO IS NOT A PARENT, BUT WHO IS A GUARDIAN WILL BE ALLOWED TO BE PAID TO PERFORM ANY SERVICES. Going forward, if you, the parent, falls over dead after January 1st, 2013, any family member you have ready to become the Guardian, WILL NOT BE ALLOWED TO BE PAID TO PERFORM SERVICES. As long as the family member is NOT A GUARDIAN, they may be paid to perform services.

(f) An individual who contracts with or is employed by an entity that contracts with a local management entity (LME) for the delivery of mental health, developmental disabilities, and substance abuse services may not serve as a guardian for a ward for whom the individual or entity is providing these services, unless the individual is a parent of that ward. (That first sentence is fine.) The prohibition provided in this subsection shall not apply to a member of the ward's immediate family who is under contract with a local management entity (LME) for the delivery of mental health, developmental disabilities, and substance abuse services and is serving as a guardian as of January 1, 2013. (This is vague. It should have the same language as the first sentence: ... immediate family who contract with or is employed by an entity who contracts with a local management entity (LME) ...) For the purposes of this subsection, the term "immediate family" is defined as a spouse, child, sibling, parent, grandparent, or grandchild. The term also includes stepparents, stepchildren, stepsiblings, and adoptive relationships."

[ Read more: Mary's full original email here. ]

DMA 8M Public Comment on CAP-I/DD 361

ote: 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 361

To: Webmedpolicy, Dma
Subject: Comments to proposed CAP MR/DD Manual
Sent: Friday, August 12, 2011 3:04 PM

I have two major concerns about the proposed CAP MR/DD Manual. My 20 year old daughter is profoundly physically and intellectually disabled. She requires 100% care and has special medical and behavioral needs.

Proposed Elimination of Enhanced Personal Care
I am very concerned about the proposed elimination of enhanced personal care. This has been an authorized service because of an identified need of a small segment of the CAP waiver recipients. What is the justification to eliminate this service? It is certainly not because there are no longer any CAP recipients "who have intense medical or behavioral needs." I thought the objective of the CAP MR/DD waiver was to keep individuals out of institutions. Cutting services to individuals with the most complex needs makes it more likely that some of these individuals will have to be placed in 24 hour residential settings. This will not improve the quality of life for these individuals nor will it save money. In fact, it will cost a lot more than providing these individuals with enhanced personal care.

At the pay rate for regular personal care services, it is impossible to find and keep good staff qualified to make decisions regarding behavior management, to carefully monitor seizures, to provide g-tube feedings, and to safely transfer my daughter who has had several major orthopedic surgeries. My daughter needs consistency and I need a break physically from 20 years of caring for my daughter. Frequent turnover of staff and/or going for long periods without staff because of the low pay for personal care services would be very detrimental to my daughter's quality of life and safety at home.

Limit of 129 hours/month of Habilitative Services
Again, a decision has been made not to differentiate between CAP recipients based on their level of need, currently measured by SNAP score. I believe providing the same limit of 129 hours/month to all CAP recipients discriminates against my daughter and others with high levels of need. For adults who are no longer enrolled in public schools, there should be a higher monthly limit for habilitative services, incremented by SNAP Level.

When my daughter ages out of public school, she will need opportunities to participate in the community. I hope to enroll her in a day program which operates 6 hours/day 5 days per week. That one program will use up all of the allowed habilitative service hours. But my daughter needs habilitative services for other community experiences such as weekly Special Olympics bowling, a weekly community drumming group and a monthly evening social gathering. In addition, she has habilitative goals to work on at home.

These two policy changes seem to completely disregard the quality of life of CAP MR/DD recipients for the sake of an easy way to save a relatively small amount of money. I ask that these two changes be reevaluated, with a sincere consideration of quality of life and safety. Please don't abandon the CAP recipients with the greatest needs.

Thank you,
Beth H.
Wilmington, NC

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 293

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 293

To: Webmedpolicy, Dma; Office of the Governor; kpowell@arcnc.org; Michael Cooper; admiral ballard; opinion@charlotteobserver.com
Subject: 8M-CAP-I/DD
Sent: Thursday, August 11, 2011 9:59 PM

To Whom it may concern:

I am writing to share my thoughts on the waiver changes proposed by DHHS/DMA for Community Alternatives Program for Individuals with Intellectual/Developmental Disabilities. I do not understand the details and technical terms as well as I should but I understand enough to know vital services are proposed to be cut. I worked outside the home for the first 18 years of my daughter's life to provide for her and was lucky to have parents to help me with childcare. When Jordan turned 18 I was able to stay home and provide Home Supports through CAP for her which resulted in an amazing improvement in our lives. I was no longer so exhausted from working all day and taking care of her all night that we actually began to enjoy our life rather than getting by.

If Home Support hours are cut I will be forced to work an outside job again to pay our bills. If other support services are cut then who will care for Jordan while I work this other job? My parents have retired, moved and are unable to help me now that they're older. I have never even thought of a group home or institution until now. If I can't care for her and she was to go to a group home or institution then the government would be paying for that. Why would you take my income and give it to a group home or institution when my sole purpose in life is to love and care for her. I would personally live in my car if that's what it took to keep Jordan with me but I would hope it would never come to that. I have worked from the age of 16, paid my taxes, never had government assistance and never plan on it. I don't want food stamps or welfare or my daughter placed outside our home. I want to be paid for the job I am doing which is to provide 24/7 care for Jordan. I love her, want to care for her and grow old with her.

I would hope you wouldn't make these changes so the families of people with disabilities can stay together and have the lives they deserve. I thought that was the purpose of Home Supports and other support services. Stop giving more money to drug addiction programs, released convict programs, etc. and let us keep what our children deserve and need.

Sincerely,

Donna C.
Pineville, NC

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 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 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

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.

DMA 8M Public Comment on CAP-I/DD 289

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 289

To: Webmedpolicy, Dma
Subject: CAP Waiver changes
Sent: Thursday, August 11, 2011 8:55 PM

As the single parent/guardian of a 23 year old young man I am concerned/distressed about Home Supports being removed. I am also concerned about the changes which will affect his day program and enhanced services. Matthews plan is written so that he will continue to grow and learn at home and in the community, with lots of family support Matthew is a happy, healthy young man.

I have and always will put my son's needs first. Matthew is unable to be alone and is unable to provide for his basic needs due to his challenges which is why I am unable to work a second job. I feel that I, as a parent, am being forced into decisions which are not what is best for my son.

After moving back to NC in 2006, we lived with my elderly mother and I worked third shift (6:30pm-5am) for four years because I was unable to find help that could be depended on. Due to the diffuculty I had in finding help, I was introduced to the idea of Home Supports. At first I said I am his mother and should not be paid to take care of him, then I thought of being able to provide a home for him (he slept on a bed in the living room) and the fact that my mother's health was declining.

Once I started providing Home Supports Friday thru Monday, I was able to change positions and work 8am-4:30pm. We moved into a home which provided Matthew his own room and is large enough for him to use his wheelchair and walker. He is enrolled in a day program where he is able to be with his peers and be challenged (8:30am-4pm). Due to a lack of help recently I have been paying a neighbor to stay with him an hour in the morning and I am home when he arrives in the afternoon. I am able to share a meal with him, care for his needs, interact with him and tuck him in every night.

With the changes to habilitative services, I am concerned that there will not be enough hours to cover his care and I feel he needs this program more than any other. What happens then? With the deletion of enhanced services I am concerned that it will be harder than ever to find someone to provide those services. What happens then? With the deletion of Home Supports, I am concerned as a parent/guardian I will have to make decisions which will have a huge negtive impact on Matthew's life/lifestyle. What happens then?

I feel I am being forced to consider placing my son so that he will get what he deserves, I feel it is unfair to us. When deciding on changes, please keep in mind that we are real people with goals and dreams who face additional challenges.

In closing, I would like to say why should any one be placed when a natural/adoptive parent/guardian wants more than anything to keep their adult child at home and provide for their needs, as well as, provide a loving and nurturing environment.

Sharon B.
Arden, NC

Comments to DWAC 6/20

On Wednesday, June 20th, my daughter, her helper Kim, and I attended the DHHS Waiver Advisory Committee (DWAC) Meeting. After lengthy powerpoint presentations by DMA's Behavioral Health Policy Chief, Kellie Crosby, and Piedmont Behavioral Health's CEO, Pam Shipman, the DWAC meeting was opened for public comment... the time that consumers, advocates, caregivers and parents are able to express concerns in 3 minute increments. 

This was the second DWAC meeting I have attended and having no shortage of words, I find that 3 minutes is hardly ample time for anyone to present much of anything credibly nor share information, stories, experiences, or supporting documents. Not on a topic of this magnitude with such a vast variety of concerns and tales. Some of my fellow public commenters drove to Raleigh from as far as Asheville and Wilmington to have their 3 minutes of voice heard.

On Wednesday, I requested of the DWAC Committee the opportunity to present on behalf of parents.

I also signed my non-verbal daughter, Isabel, up to speak... 

Following my comments (below), Isabel proudly strutted up to the podium, leaned in close, put her mouth right on the microphone and blew. I'm not certain who was more amused by her antics, Isabel or her attentive audience. 

And in that moment, the room visibly softened... as though for that brief moment, we all remembered the real reasons that brought us together - for that brief moment, we had a commonality, a shared goal and purpose... We were all on the same team, one village, for one brief moment. 

And it does take a village.

With my prompting, she showed the board members the ASL signs for "friend" and "help." I asked her if Miss Kim was her friend that helped her, she responded by signing "yes." I asked if she loved Miss Kim, she again responded "yes" and then told us she was finished, turned around and grabbed her Happy Meal box and sat down. 

Unlike her mom, Isabel is a lady of few words - however, in my humble and biased opinion, she delivered the most powerful message of all that day.

My Speaking Notes to the DWAC Committee

Before I begin, I'd just like to say for the record: 

• The added position / role of Community Guide is a JOKE. I guarantee I - or most any parent or Direct Care Support Staff in this room - have more knowledge and resources than your best Community Guide. 
• Call Center / Telephone Support is an INSULT to every PARENT in this room - an insult not unlike being spat upon. 

Recipients and families continue to have NO failsafe, constitutionally protected Due Process rights regarding appeals to a third party with the authority to make a final decision. 

While the Regulatory Reform Act of 2011 does authorize the ALJ final authority over Medicaid CAP decisions as of January 1, 2012, the powers that be cannot agree on the waiver language to CMS which will allow this to happen, thus recipients still have NO DUE PROCESS save hiring counsel. --My husband is an attorney & WE could not afford a 10-20K retainer to file a lawsuit against the state.

I’ll be happy to explain in more detail, but I urge you to review the Open Letter and Outline that I forwarded to Mr. Marsh again today for redistribution to the Committee - if you’re impatient, you can also find the information on my blog - and I’ll be happy to provide you with the URL.

Recipients and families, those of us who have the MOST to lose and suffer, continue to NOT be heard. 

Has anyone here seen or reviewed any of the 540 Public Comments to DMA in 2011 that Mary Short just spoke of? -- If you haven’t, it’s also on the blog.

I’d like to respectfully request of the Committee permission to present as a parent representative at the next DWAC meeting. I’m sure other parents would like that opportunity also. Legislative and Committee members must hear from the folks not paid to sit in the front rows with their hands up begging to be called upon.

Recipients and families, those of us who have the MOST to lose and suffer, continue to NOT have equal ownership in insuring the success of this mental health overhaul. 

Until every stakeholder has equal voice and equal ownership in this process, there will be no bridging of this divide and there will be no mutual success.

The recent hot topic, if you read the news, is HB 1075 which authorizes LME / MCO Director’s giving themselves a raise among other things - if you haven’t seen it, it’s on the blog.

Regarding this HB, Representative Dollar addressed the concerns of his GA colleagues in a recent legislative meeting by assuring them that the bill could always be changed later... 

We continue to trim the fat off the bottom of this dynamic. There is no more fat to trim! Direct care staff make nothing for the jobs they do & will be making even less as hours continue to be shifted to lower paying reimbursement rates. --Again, see my outline and supporting documents; on the blog.

Per DOJ findings -- While the state scurries to reintegrate one population of citizens from inappropriate placements in state facilities back into community settings … we are moving another very vulnerable population of citizens living at home with their families, slowly but steadily, in the other direction - into crisis.

WE CANNOT FILL A GAP BY DIGGING A BIGGER HOLE!

It’s NOT ENOUGH that we can go back and make changes AFTER the damage has been done!

Children and Families, like those in this room today, may never recover from such damage -- it has taken them a lifetime to acquire the skills they have today.

And there WILL be damage.

Let me say that again: THERE WILL BE DAMAGE.

Think: “The Titanic.” --They knew. They were warned. 

And there was no tip to that iceberg either...

Thank you.

SMC Innovations Services Presentation info from 6/13

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! 


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


From: Mary K. Short Tue, Jun 19, 2012 at 4:05 PM

Smoky Mountain Center has posted the video of the presentation and Q & A from last Wednesday's NC Innovations Services Presentation. The link to the page is below and once on that page, then you can click on the link to watch the video!


However, the video DOES NOT INCLUDE the Q & A. The video is 24 minutes and the meeting was 1 hour and 40 minutes. The Q & A posted to the link, SMC's web page for the meeting, DOES NOT INCLUDE almost ALL of the questions that were asked.


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

http://www.smokymountaincenter.com/consumers.asp?section=innovations

NC Innovations Services Presentation

Smoky Mountain Center held an information session for Consumers and Families receiving Intellectual and Developmental Disability services on Wednesday, June 13, 2012 from 6:00-8:00 p.m.
Topics during this informational session included:

• What services are available in NC Innovations?
• Who can provide NC Innovations services?
• How do NC Innovations services compare/crosswalk to CAP-MR/DD services?

Please use the links below to either view the archived video of the meeting or the presentation document that was used during the session.

Archived Video of Presentation
NC Innovations Services Presentation Document - Adobe PDF

NC Innovations Services Q&A

Q: Can Personal Care assist with activities ordered by a physical therapist?
A: Yes. Personal Care service definition states that Personal care includes assistance with monitoring health status and physical condition, assistance with transferring, ambulation, and use of special mobility devices. Personal Care includes support to maintain skills gained during habilitation.

Q: Can home modifications be utilized on rental property?
A: Home modifications are physical modifications to a private residence. A private residence is a home owned by the participant or his/her family. Items that are portable may be purchased for use by a participant who lives in a residence rented by the participant who lives in a residence rented by the participant or his/her family.

Q: Can Residential Supports be provided by a parent?
A: Per DMA, If the individual is residing with their parents, and their parents want to be the provider, they cannot provide residential supports. The reference in the manual has more to do with the guardian providing the service. If the individual is living with their parents, it's not an out of home setting so it can't be residential.

Q: Can a Community Guide provider provide respite?
A: Community Guide exclusions state that "the provider of Community Guide services that does not provide Agency with Choice services may only additionally provide Community Transition. The CG services provider may provide Agency with Choice Services to the same individual. If the CG Services Provider is providing Agency with Choice Services to a participant, the Provider may additionally provide Community Transition, Individual Goods and Services, and Primary Crisis Response Services to the individual." CG provider agency can provide any other service, but not to the same participant by the same worker.

Q: Can an AFL provider provide Community Networking as back-up if regular staff not available?
A: If AFL provider is providing Residential Supports, the services may not be billed at the same time. There is no exclusion to providing service as long as services are not provided at the same time and the AFL provider is employed by an agency who is an approved provider in the SMC network and contracted to provide Community Networking. The Community Networking services does not include activities that would normally be a component of a participant's home/residential life or services. Please contact your agency's contract manager for specifics about the agency's contract.

Parent Legislative Correspondence re PBH Executive Salary & Staff Council

Pat Wiegand is the parent caregiver of two adult DD recipients, Casey and Jason, who depend upon CAP Waiver supports to keep her family together and maintain some small level of community involvement.

You may recognize their names from their May 22nd Arc video at the Coalition Rally or from the touching Family Stories video earlier this year.

Pat and her family reside in Senate District 9 and House District 18. Her children, Casey and Jason, receive services through Southeastern Regional MH/DD/SAS Services (SRMHC) LME.

Parent Legislative Correspondence

> -----Original Message-----
> From: Pat Wiegand
> Sent: Monday, June 18, 2012 5:18 PM
> To: Sen. Stan Bingham; Sen. Harris Blake; Sen. Louis Pate; Sen. Chris Carney; Sen. Austin Allran; > Sen. Bob Atwater; Sen. Doug Berger; Sen. Jim Davis; Sen. Ellie Kinnaird; Sen. Eric Mansfield; 
> Sen. Wesley Meredith; Rep. William Brisson; Rep. Bill Current; Sen. Bill Rabon; 
> Sen. Gladys Robinson; Sen. David Rouzer; Sen. Bob Rucho; Sen. Tommy Tucker
> Subject:
>
> I would like you all to know me and mine all oppose any changes to state
> general statue 122C!
>
> In recent days I have learned that PBH ceo is earning 160.000 a year
> which I bet does not include bonuses. Plus they have 10 Attorneys on
> staff. Please tell me is this any way to spend money intended to help
> the disabled. As a family member I must say this is very upsetting
> .. I would think all citizens of North Carolina would be opposed to
> spending taxpayer money to a private company who is obviously making a
> good deal off our most needy. I have a thought has anyone considered
> doing managed care with a not for profit agency?
> It's just a thought
>
> Pat Wiegand

Parent PBH Inquiry

Pat Wiegand is the parent caregiver of two adult DD recipients, Casey and Jason, who depend upon CAP Waiver supports to keep her family together and maintain some small level of community involvement.

You may recognize their names from their May 22nd Arc video at the Coalition Rally or from the touching Family Stories video earlier this year.

Pat and her family reside in Senate District 9 and House District 18. Her children, Casey and Jason, receive services through Southeastern Regional MH/DD/SAS Services (SRMHC) LME.

Parent Perspective and PBH Inquiry

---------- Forwarded message ----------
From: Pat Wiegand
Date: Mon, Jun 18, 2012 at 2:22 PM
Subject: Re: re- PBH Inquiry
To: Rachel Porter

Dear Ms. Porter,

I am interested in the salaries of all PBH executives. I feel as the families of the IDD consumers we have a right to know how much of the funding is taken from them to pay high salaries. We as a group would also like to know how PBH is paying 14 million dollars for a building that to the best of our knowledge is for paper pushers. We don't believe there are any services in the building benefitting clients if this is not accurate information I will be glad to pass along any corrections you may have.

Thankyou,

Ms. Patricia Wiegand

ps I would appreciate a response before the DWAC meeting wednesday


On Mon, Jun 18, 2012 at 1:57 PM,
Rachel Porter wrote:
> Dear Ms. Wiegand,
>
> I am responding to your inquiry regarding Pam Shipman’s salary. Ms. Shipman
> has held the position of CEO at PBH since July, 2011. Her salary is $160,000
> annually.
>
> Please let me know if I can help further.
>
>
> Best regards,
>
> Rachel Porter
>
>
> M. Rachel Porter
> Director of Communications
> 4855 Milestone Avenue
> Kannapolis, NC 28081
> www.pbhsolutions.org
> 704.939.7705
>
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------ Pat's original email, sent 6/13 ------

To Whom it may concern

I am writting this request to find out if and where the salaries for executive officers of PBH can be found . It is our understanding that as a goverment funded company it should be made available to the public.
I look forward to hearing from you as soon as possible as we have meetings where I would like to present the needed information.

Respectfully,

Patricia Wiegand