What's New in January & February?

January and February 2013 news, events, and updates.

February

• Provider Stonewalling via Paperwork Nitpicking? (video)
• Adding Insult to Injury: MCO distributes helpful guide for NC Criminal Records Expungement
• Hundreds of NC's Licensed Mental Health Therapists Unable to Work
• Legislative correspondence to Senator Neal Hunt, 2/11.
• NC DHHS Request for Information, from 2/4.
• Critical Medicaid audit based upon unrealistic demands, from NC Policy Watch

January

• The 2013 ASNC Annual Conference in Charlotte, NC
• Registration Open for 2013 Disability Policy Seminar in Washington, DC
• 2013-14 DHHS Related Legislative Committee Membership and Full Appropriations 
• Geraldo Rivera: The P&A System (video)
• Ongoing problems with NC's managed care transition, and how to address them, from The Arc of NC
• Update from The Arc of NC on the Personal Care Services / Group Home Crisis 
• Mecklenburg gets more time to start Medicaid program | CharlotteObserver.com
• Special Medicaid Bulletin on b/c Waivers from DMA, Kelly Crosbie
• Parent email re: Gov. McCrory Press Conference 1/7/2013 and the MeckLINK issue
• Urgent Meeting 1/8 at 3P re MeckLINK
• New CAP I/DD Manual Posted
• Warnings Aplenty That MeckLINK Unprepared
• PBH Takeover of Mecklenberg County 
• CMS Creates New Office of Dual Eligibles  

[ What's New Main ] 

New CAP I/DD Manual Posted

For those of you still on the CAP-I/DD waiver, the manual has been posted to DMA's web site.

Here is the link to the new CAP-I/DD MANUAL ... I copied page 35, Section 4.4 that talks about family member as provider. I put the bold on the word "recommended." It seems some of the LME's still on the CAP-I/DD waiver are telling families NO MORE THAN 40 HOURS at all. It is clearly "recommended" rather than absolute. Your provider agency needs to go to bat for you with the LME and needs to tell the LME they want you to work more than 40 hours.

Mary K. Short
828.632.5888 or 704.451.4144 (cell)

http://www.ncdhhs.gov/mhddsas/statspublications/Manuals/index.htm
CAP-MR/DD Waiver Manuals

CAP I/DD Comprehensive and Supports Waivers (Released 1/2/13)
Manual Revisions
Manual for 2008 Waiver Comprehensive Waiver (Released 7/21/10)
Manual for 2008 Supports Waiver (Released 7/21/10)

http://www.ncdhhs.gov/mhddsas/statspublications/Manuals/cap-manual1-2-13.pdf

4.4 Waiver Services Furnished by Family Members Natural supports are the personal relationships that occur in every day life that support people to participate more fully in their community and enhance their quality of life. Natural supports include informal and unpaid supports that are generally reciprocal in nature. Person centered planning promotes the concept that paid supports should supplement, but not replace, natural resources and supports available to the participant.

Waiver services cannot be provided to minor children (18 years or younger) by their legally responsible person (parents, adoptive parents or step parents) and / or other family members living inside the home. Waiver services may not be provided by the spouse of the participant. In addition, the legally responsible person cannot own or operate the provider agency that provides services to their minor child / step child / adopted child or spouse.

When parents, family members and / or guardians of the person are paid care providers, they must meet all of the following conditions:

1. They must be employed by a provider agency and meet the same requirements for employment as any other employee.

2. They must meet all required provider qualifications as identified in the service definition(s).

3. A parent or relative who lives in the natural home of the adult participant may only provide Personal Care and/or Home and Community Support services. It is recommended that no more than 40 hours of service per week be provided by a parent or relative who resides in the same home as the adult participant. Additional hours may be provided by a parent or a relative as appropriate, as long as health and safety can be ensured and isolation does not occur.

4. When parents, family members or guardians of the adult participant are paid care providers, there must be a clearly defined back up plan that specifies who will provide the care when the parent, family member or guardian is unable to do so.

5. When parents, family members or guardians of the adult participant are paid care providers, the PCP must outline measures that will ensure the participant’s choice and control over his or her daily life and ensures community integration. Targeted case managers will monitor for compliance, health and safety and evidence of possible social isolation.

What's New in August

August 2012 news, events, and updates.

• SIS [Supports Intensity Scale] Community Forums.
• From The Arc of NC: DOJ Settlement Good for People with Mental Illness, but May Leave People with I/DD Out.
• From The Arc of NC: Crisis for those Receiving Personal Care Services.
• NCGA Meeting Notice: JLOC on HHS, 9/11.
• Added to Google Calendar of Events.
• Apples, Oranges, and Supported Employment.
• Saturday Humor for Special Parents. =)
• More on Appeals and Due Process from DRNC.
• Commentary: Appeals and Due Process (or Lack There Of).
• National Core Indicators (NCI) State Report for NC and Durham LME Adult Consumer Survey, 2009-2010 data.
• DHHS / US-DOJ Settlement Documents, 8/23
• DRNC Press Release: Disability Rights NC Applauds North Carolina’s Settlement with U.S. DOJ, 8/23.
• DHHS Press Release: NC DHHS, US DOJ Reach Agreement on Community Based Care for Only Citizens with Serious Mental Illness, 8/23.
• NC Division of Vocational Rehab Input & Public Forum, 9/20.
• added to Google Calendar of Events
• Panel Discussion re: impact of PCS & IMD laws on Housing for People w/ Mental Illness, 8/27.
• added to Google Calendar of Events
• Family Advocacy Network Stewards of Children Workshop 9/8.
• added to Google Calendar of Events
• NCGA Draft 8/14 Meeting Agenda for the JLOC on HHS Oversight Committee.
• From The Arc of NC: Unintended Budget Cuts Must Be Fixed!
• From The Arc of NC: Lessons from the Western Highlands Network overruns.
• WRAL article "Patients, advocates wary as NC again reforms mental health system" and info / comments from parent, Mary K. Short.
• FIF Lifetime Connections Program Seeks Program Coordinator (Durham, NC).
• For Consumers - Volunteer Participants Needed : NCDVRS Community Rehabilitation Program (CRP) Steering Committee.
• DRNC PAIMI Advisory Council members needed.

[ What's New Main ]

DOJ Settlement Good for People with Mental Illness, but May Leave People with I/DD Out

From The Arc of North Carolina

DOJ Settlement Good for People with Mental Illness, but May Leave People with I/DD Out

[ view at ArcNC.org ]

While it is too soon to know what the U.S. Department of Justice (DOJ) Settlement will mean for people with mental illness, now is the time to begin thinking about the effects it will have on our Mental Health/Developmental Disability/Substance Abuse (MH/DD/SA) system.

We appreciate the N.C. Department of Health and Human Services (DHHS) and DOJ finding a way to avoid costly litigation by reaching a settlement. While people can argue about the settlement’s details, there is really no question that NC’s placement of people with mental illness [and people with I/DD] in adult care homes is not appropriate. These settings were designed for people who are elderly, and are not settings where individuals who are young and have a disability will thrive. Spending large amounts of money defending a federal lawsuit would have been a true waste of taxpayer money.

The settlement does several things. The core of it requires the state to create new housing options [defined as slots]. These housing slots will include rental assistance and support services for 3,000 people, 2,000 that currently live in adult care homes, and 1,000 that are in jeopardy of being placed in adult care homes (or rest homes, as they are sometimes called) by 2020. It also requires the state to create, or increase, the availability of community services for people with mental illness including supported employment and additional Assertive Community Treatment Team services. The effort will have an independent monitor who will hold the state accountable. If the state fails to meet timelines, the DOJ can take the State to court.

One of the most disappointing parts of the Settlement is its lack of inclusion of people with developmental disabilities. Though the original complaint was about people with mental illness, there is no doubt that NC continues to rely upon similar institutional settings for people with I/DD. That people with I/DD were leftout of this settlement is concerning. Not only is the state allowed to continue its bias towards institutional settings in placements, community options made available to people with mental illness could come a the cost of community options for those with I/DD, given the State's limited resources.

Creating “scattered-site housing” is a great idea for all people with disabilities. The Arc continues to develop housing options that meet this criteria, but it is a slow process. We are also concerned that policy-makers in Washington and NC are adhering to conflicting policy in terms of housing and people with disabilities. One example is the HUD (US Dept. of Housing and Urban Development) funded properties The Arc manages for people with mental illness. Many of the properties are apartments that will not meet the scattered-site definition, yet have rental assistance vouchers as part of the project. Under the settlement agreement, very few of these properties will be available for people coming out of adult care homes. The changes that would be needed to make them available for these people currently run afoul of federal HUD regulations. We hope the DOJ and HUD will work together so future efforts will not exclude housing options promoted by federal agencies.

While the state has agreed to this promising settlement, we have significant related problems in our service system that must be addressed. One such problem is the crisis that will be created if we do not find a solution to the personal care issue. While the state will be creating community housing options for one group of individuals, others will be losing services and potentially their housing. This is not the way a system should work. While it is impressive that the General Assembly found funds to support the settlement, it should be noted that critical services are being sliced because of budget cuts at the same time.

While this settlement agreement is a step in the right direction, it is far from perfect. It does much for people with mental illness who have faced institutional bias, but at the same time it does nothing for people with I/DD facing a nearly identical problem. This is an opportunity for the leadership of the General Assembly and Administration to proactively take the spirit of this settlement and apply it to other populations. The best possible outcome is a more responsive system for all.

On Wednesday of next week the legislative Blue Ribbon Commission on Transitions to Community Living will hold its first meeting. Hopefully this committee will be the catalyst to create such change.

Panel Discussion on Housing 8/27

Panel Discussion about impact of PCS & IMD laws on Housing for People with Mental Illness: 8/27 @ 7pm

There is an impending crisis for people with mental illness who need assistance and/or supervision to live successfully in the community. There are two serious issues:

1. The state has changed the requirements for residents in Group Homes, Adult Care Homes, and Family Care Homes to qualify for Personal Care Services (PCS). The new rules will make it virtually impossible for people with mental illness to qualify.
   
   All of this adds up to lots of problems for people with mental illness living in group homes and family care homes. In fact, the Chief Clinical Operating Officer of the State Division of Medical Assistance told the Legislative Oversight Committee for the NC DHHS on Tuesday, August 14 that the projected impact on supervised living group homes for people with mental illness is that nearly “0%” of residents will qualify based on the new guidelines and assessments. People with mental illness in other congregate living settings (Adult Care Homes and Family Care Homes) will be equally affected. The state projects that 12,000 people total will no longer qualify.
   
   We estimate that, on average group homes are billing about $6,000 per year for each resident for PCS. Loss of this amount of revenue will undoubtedly force some homes to close and those that stay open will need another source of revenue to be able to provide the quality care that is needed. The revenue from SSI and SA funds alone is not enough.
   
2. The Department of Justice has ruled that the state is in violation of the Americans with Disabilities Act by housing people with disabilities in congregate settings. One outcome is that the federal Center for Medicaid and Medicare Services is requiring NC to enforce a 1965 Law. It is called the Institutions for Mental Disease (IMD) provision. It does not allow Medicaid payments for resident’s doctor’s visits or medication if a single provider has more than 16 individuals taking medications for mental illness even if they are in separate, small homes in different locations.
   
   One of the first things we have planned is a Panel Discussion on August 27, 7-8:30 pm at Highland United Methodist Church, 1901 Ridge Rd., Raleigh, NC in the Church Conference Rm (adjacent to the church office). You will have an opportunity to hear from the individuals who are involved in making and implementing these new policies as well as hearing from a group home manager and consumer who are impacted (See below). We hope to see you there and to hear your thoughts about this issue.

• Selden Holt from UNC Center for Excellence in Community Mental Health, Moderator
• Vicki Smith, DRNC – Background on PCS changes
• Leza Wainwright, Chief Clinical Operations Branch, NC Division of Medical Assistance
• Jenny Gadd, Group Home Director ‐ Likely Financial Impact of PCS Changes 
• Robert Bullock, Group Home Resident, Why Group Homes are Needed 
• Jim Jarrard, Div MH/DD/SAS, Viability of 5600A Group Homes in the Housing Continuum
• Ann Akland, Advocacy Chair, NAMI Wake

Eric S. Fox, M.A.
Mental Health Program Coordinator
NC DHHS MH/DD/SAS
Advocacy & Customer Service Section
Consumer Empowerment Team
3009 Mail Service Center
Raleigh, NC 27699-3009
(919) 715-3197 ext 235
email: eric.fox@dhhs.nc.gov
website: http://www.dhhs.state.nc.us

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) http://www.wral.com/news/state/nccapitol/story/11384615/

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."

• Reporter: Mark Binker
• Web Editor: Jodi Leese Glusco

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

EXTRA:  Mercer Report link

http://www.wral.com/asset/news/state/nccapitol/2012/08/02/11386093/WHN_Final_Report.pdf

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

http://www.ncd.gov/publications/2012/CMSFebruary272012/

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://www2.journalnow.com/news/2012/jul/19/1/centerpoint-faces-a-17-million-cut-from-the-state-ar-2445575/

http://www.newsobserver.com/2012/07/18/2206751/money-woes-snag-mental-health.html

http://www.newsobserver.com/2012/07/26/2222435/state-audit-says-dhhs-efforts.html

http://www.newsobserver.com/2012/07/26/2222839/nc-auditor-catching-medicaid-cheats.html

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!

http://www.carolinapublicpress.org/10977/asheville-western-highlands-network-fires-ceo-scrambles-to-address-funding-shortfall

I/DD Budget Cuts May Be Worse than Expected

From The Arc of North Carolina

I/DD Budget Cuts May Be Worse than Expected

[ original post here ]

In what is being described as a mistake, a budget transfer intended to move Guardianship funding from one division to another has created an additional 4.3 million dollar cut primarily to community services for people with I/DD.

Department officials and legislative leadership agreed to transfer $4.3 million in the Social Services block grant from the Division of MHDDSA to the Division of Social Services. The money was to be used by either Corporate Guardians or local DSS to provide guardianship services. The transfer was needed because, as LMEs transfer to MCOs, they will no longer be allowed to be guardian for individuals in their catchment areas.

Somehow the transfer of funding happened twice causing an additional cut of 4.3 million dollars to MHDDSA community services funding. Department officials tell us that this was never the intent and discussions with legislative staff point to a mistake, although we have no official confirmation. Unfortunately, the reduction has been included in the allocations to LME/MCO’s and several are taking immediate action to cut services. We are hearing reports that some programs face 20% reductions effective August 1st.

The Arc is calling on the DHHS to ask LME/MCO’s to hold off on implementing this reduction until all possibilities of fixing the problem have been exhausted. This reduction to an already fragile system is unwarranted and will harm individuals with I/DD.

The Arc is also concerned about how LME/MCO’s are implementing the one time $20 million reduction to community services. This cut is an extension of a reduction taken last year. While LME/MCO’s were encouraged to use fund balances to offset this reduction last year, we do not believe most did so. We are seeing a disturbing trend that has LME/ MCO’s passing on this entire cut to people with disabilities and their families. We believe a more responsive approach would be for LME/MCO’s to use fund balances to offset this reduction since it is a non-recurring cut. It does not seem appropriate for the Management Entities, who are charged with ensuring individuals have services, to use fund balances to become MCOs while the people they are created to serve lose services.

We will be tracking these reductions and will continue to encourage the State and LME/MCO’s to find alternatives to wholesale reductions for people with disabilities and their families.

Once we determine what steps the DHHS plans on taking, we will issue an action alert describing what actions people with disabilities and their families should take, if any, to influence these changes.

Related : 

• MCO Western Highlands Network estimates 3.5 Million Shortfall since January 2012.
• LME Smokey Mountain Center holds community forums regarding 3.4 Million Service Funding Reduction.
• Disability Rights NC Press Release : State fails to settle with DOJ but announces 8 year plan, 7/26.
• News and Observer article : LME Money Woes, from 7/18.

Video from Jordan Institute Leadership Congress

From Dr. Gary Nelson
Jordan Institute for Families, UNC-CH School of Social Work
Leadership in Transition to Accountable Behavioral and I/DD Care Team

On June 8th, 2012, over 100 leaders of North Carolina’s behavioral health and I/DD system – including those from state health and human service agencies, local government, the General Assembly, provider groups, faith organizations, universities, and consumers – convened to shape the plans for making ours the best public system in the country. The working session was convened by the Leadership in Transition team at the Jordan Institute for Families at UNC. 

The 100 participants brought their wide-ranging perspectives to bear, collaborating to identify the most critical steps forward for the system. The link below takes you to a video that captures the energy and the momentum in the room that day. 

The recommendations that emerged and were voted on that day include:

• Utilize data to become less reactive. Identify a few meaningful citizen outcomes to measure performance and make the data accessible to all through multiple venues.

• Keep all citizens informed through public engagement, education and training so all citizens can become stakeholders of the system.

• Connect across systems to develop a one stop shop to access services.

• Employ regulations and incentives for good and poor performers.

• Gather around a shared vision and outcomes.

• Ensure an appropriate level of funding.

On July 4th, North Carolina lost Steve Jordan, the director of the Division of Mental Health, Developmental Disabilities and Substance Abuse. His thoughtful leadership of the system and his guidance through our process were indispensable. We wish his family and his colleagues peace and healing.

In the coming weeks, the Jordan Institute for Families will be finalizing the recommendations and delivering them in a report summarizing the activities in 2011-12 that led up to the Leadership Congress. All June 8th participants, members of the General Assembly, and the Governor will receive that report.

More commentary on the Leadership Congress and Steve Jordan.

My full speaking notes as a consumer parent from the Leadership Congress.

email to Pat McCrory & Twitter

As we all should, I prefer to be an educated voter and have a good understanding of not only the issues at hand, but the political positions on those issues that matter most. So I'm following lots of folks these days and Twitter, as annoying as it is, comes in handy. 

As a parent of a child with profound Developmental Disabilities and Medicaid / CAP recipient, it goes without saying that I am very interested in candidate positions on DD / Medicaid / DHHS matters that will impact Isabel, our family & lots of special peeps across the state - as I'm sure most special parents, providers, and direct-care-staff staff are.

If you Tweet, feel free to follow me as that'll pretty much be my focus 'til the end of this thing - with maybe an occasional coffee picture thrown in, only because to my knowledge caffeine does not come in an IV drip yet.  

*Please note: re-Tweets and Follows are not necessarily endorsements, but they could be?

Email to Pat McCrory, 

Candidate for NC Lt. Governor

Pat McCrory (@PatMcCroryNC) has sent you a direct message on Twitter!

Crystal J. De la Cruz Tue, May 22, 2012 at 2:06 AM

To: info@patmccrory.com, media@patmccrory.com, volunteer@patmccrory.com, rdiaz@patmccrory.com

Dear Mr. McCrory,

I, along with many parents and family members across the State, would eagerly welcome a dialogue and are very interested in your position regarding the new state-wide Medicaid 1915(b)(c) Waiver reform and the vital impact the service cuts will have on Developmentally Disabled citizens and families.

Many of the members of the North Carolina General Assembly who sincerely wish to assure that the welling wellbeing of our most fragile of populations receive the proper supports and protections, despite their best efforts, are not receiving the most complete information from all stakeholders necessary to make the best possible decisions for all involved. True, it is not an easy system to understand, even for those who live and work in it. --All the more reason that after so many proven failures, we slow this train down, get it right, and make certain that we arrive at the destination intended. --All the more reason that those who will be most affected by these decisions and changes - the innocent and vulnerable developmentally disabled children and their overwhelmed and exhausted families - have a voice and that voice be heard.

Currently, our voice is NOT being heard. 

Currently, there are no appropriate appeal procedures in place for families regarding the care of their special loved ones and the hope of fail-safe due process protections are in dire jeopardy.

For your review, I have attached the letter and enclosures previously sent to Governor Beverly Perdue and members of the General Assembly earlier this year. To the best I can confirm, it was never personally read by our Governor. From the 170 members of the House and Senate, I received 5 responses to my initial mail.

I look forward to hearing more on your position and invite you to please contact me at any time.

Thank you in advance for your time an attention on behalf of my daughter, Isabel, my family, and the thousands of special populations across the State of North Carolina and the families who love them.

Sincere regards,

-- 

Crystal J. De la Cruz - Hopper

Mother, Advocate & Concerned Citizen

[Phone] Office

When we allow the value of human life to be determined by capital gain, when we sacrifice the well-being of the most innocent among us to compensate our own shortcomings, and when we judge the worth of our most fragile, not by their character nor intention, but rather their abilities – We Are in Crisis.

http://no2nchb916.blogspot.com/

"The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled." 

--Hubert H. Humphrey

---------- Forwarded message ----------

From: Twitter 

Date: Tue, May 22, 2012 at 12:36 AM

Subject: Pat McCrory (@PatMcCroryNC) has sent you a direct message on Twitter!

To: Crystal J. De la Cruz

Thanks for the follow. I look forward to the conversation. Hope you will sign up on my website: patmccrory.com. Direct message sent by Pat McCrory (@PatMcCroryNC) to you (@delacruzhopper) on May 21, 11:36 PM. PatMcCroryNC Pat McCrory

Send a message to @PatMcCroryNC Want to receive mobile notifications?Download Twitter for your phone »

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Parent Legislative Correspondence

Mary K. Short is a strong advocate and the parent caregiver of an adult DD recipient with profound needs.


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

Legislative Correspondence 

from another Parent Perspective

Mon, May 21, 2012 at 1:49 PM
From: MaryKShort@aol.com
To: 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 D. 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 N. McLawhorn <marian.mclawhorn@ncleg.net>, 
Representative Tom Murry <tom.murry@ncleg.net>, 
Representative Fred F. Steen, II <fred.steen@ncleg.net>, 
Senator Austin M. 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 L. Hartsell, Jr. <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 Ann 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>, 
House Speaker Thom Tillis <Thom.Tilllis@ncleg.net>

Dear Speaker Tillis and Members of NCGA:

I have sent emails to DMA requesting the best practice documentation that was used to support the 40 hour Policy limit on parent/family that is in the NC Innovations Waiver, the CAP-IDD Waiver, and Clinical Policy 8M. At that same time, I requested the best practice documentation that was used to support the Home Supports (HS) service definition from the 2008 CAP-MR/DD Comprehensive Waiver. I have not received a response.

Here is what the State Strategic Plan for MHDDSAS 2010-2013, dated July 1, 2010, page 12 of 46 says:

"Evidence based practices are those that have been shown to be effective in multiple, scientifically conducted research studies, while best practices are accepted clinical practices that demonstrate success for the individuals served."

I have asked for that documentation because they are in direct conflict with one another.

In 2008, DMA said parents may only work a daily service, no limit on the number of days.

(Home Supports has a "direct contact hours" component attached. Using DMA guidelines for HS Level 2, 6.5 hours a day maximum, would require a parent to work 45.5 hours a week maximum for the past 3+ years AND the highest level, HS Level 5, 12.5 hours a day minimum, would require the parent to work 87.5 hours a week minimum.)

Then in 2011-12, DMA said we cannot work over 40 hours a week. This is only parents or family members who live with an individual, not any unrelated staff who comes into the home or any AFL or other Group Home worker. I did not ask for the best practice documentation that DMA has used to consistently support unrelated workers working more than 40 hours a week.

As I have been waiting for a response from DMA, I did find this information posted below to PBH's web site: "To date, there are no national practice guidelines for the I/DD population." (Link provided below.)

If that statement was true when published on PBH's web site on 09292011, then what are families to believe about any DMA best practices placed into any waiver, rule, policy, or procedure? If DMA suspects some sort of rampant abuse by parents (or other living with family member) performing services, then why haven't their internal monitoring controls exposed those abuses?

I am asking that you all intervene on behalf of the 1,091 (+/-) parents (or other living with family members) who have been providing Home Supports for the past 3+ years and STOP the implementation of the 40 hour policy once and for all. I am asking you to believe me when I tell you that NO family who has participated as a formal stakeholder has said to me at any time that they SUPPORT the 40 hour limit on parents/family members. In fact, I am consistently told by formal stakeholder family members or individuals, that they SUPPORT CHOICE by the individual and/or guardian.

Finally, I want you to consider the following two NC Innovations service plans:

(Home Supports changes to: PC = Personal Care / I-HSB = In-Home Skill Building)

After accounting for unpaid supports, if he/she needs less than 40 hours of PC/I-HSB, then he/she gets to choose to use his/her parent to perform all PC/I-HSB services.

After accounting for unpaid supports, if he/she needs more than 40 hours of PC/I-HSR, then he/she CANNOT choose to use his/her parent to perform all PC/I-HSB services or any number of hours over 40 hours.

Why is it that the individual with the least ability to adjust to change is forced to change?

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

http://www.pbhcare.org/guidelinearticles.asp **(Reviewed/Updated 03/26/2012)**

http://www.pbhcare.org/pubdocs/upload/documents/intro%20to%20IDD.pdf (09292011)

Introduction to I/DD (Intellectual/Developmental Disabilities)
Practice Guidelines

To date, there are no national practice guidelines for the I/DD population. In response to this situation, PBH initiated the development of an I/DD workgroup to draft guidelines. The I/DD work group includes stakeholders such as clinicians, providers, and family members who worked on a variety of projects related to the development of Practice Guidelines for I/DD Population. While the Practice Guidelines developed by the I/DD Workgroup are not exhaustive, the intention is that the guidelines will give providers and families useful information that can facilitate the process of learning more about I/DD.

http://www.pbhcare.org/pubdocs/upload/documents/Best%20Practice%20Guidelines%2011%2006%2006.pdf (10202011)

Practice Guidelines In
Working with Individuals Who
Have Developmental Disabilities

Tassé, M.J., Havercamp, S.M., & Thompson, C. (2006). Practice Guidelines in Working with Individuals who have Developmental Disabilities. Concord, NC: PBH.

From page 107:

PBH is concerned about the impermanence of funding sources and services for individuals with developmental disabilities. We are committed to empowering consumers and their families by giving you the information, skills, and resources you need to identify and obtain the best available supports. In this way, we help you become less reliant on the service delivery system to achieve your goals.