Legislative Correspondence to Sen. Tommy Tucker

Wed, May 30, 2012 at 4:48 PM

From: Crystal J. De la Cruz

To: Tommy.Tucker@ncleg.net

Re: DMA 2011 Public Comment Documents on CAP I/DD

Dear Senator Tucker

My sincere apologies for the delay in following up after our May 15th visit. I'm sure you can appreciate the sentiment when I say I've been "running around like a chicken with my head cut off."

I greatly appreciate your time and attention in meeting with [name stricken] and I regarding Medicaid Waiver concerns for the DD populations, their families and the wonderful providers who have kept us all afloat throughout this rocky journey. I recognize that this is not an easy time for NC and I do not envy your job as a Senator, so it means a great deal that you are open to having a dialogue. I sincerely believe that you want to see this baby put to bed and sleeping safely and soundly, so to speak, and I do admire your unwillingness to compromise your character... and that is why I sought to meet with you.

No, it's not an easy life raising a child with profound special needs - in fact, unimaginable to most, but I can tell you one thing with the utmost certainty: at the end of the day, it's our special folks who keep it real and truly put life in perspective. That is why I do what I do because I am the mother Isabel needs me to be. I firmly believe special people were not born to be tested, rather to serve as litmus to the rest of us. 

And that's why I maintain that there's so much more to these issues than fiscal accountability; besides Merriam-Webster defines accountability as: "the quality or state of being accountable; especially : an obligation or willingness to accept responsibility or to account for one's actions" Who among us are least accountable, least responsible for this mess than our special populations? 

Several members have expressed that they haven't heard from many parents. I keep pointing out that it is not an easy feat for many of these folks to pack up their kids with all their meds, supplies, sensory items, and equipment and travel hours away for a 30 minute - an hour meeting and well, most don't have the time nor vacation time because they use it all going to appointments with doctors and specialists. --Most of us do the very best we can with what we got and sometimes there's no extra left over. And sometimes when we do let the laundry or dishes go or forgo a shower to take the time to sit down and write a letter, send an email - pleading for help, it falls on deaf ears. 

Families need a little more acknowledgment than a pat on the head. Some of us are quite knowledgable, some are professionals in the field, some of us have really great ideas and we've been navigating system after system after new-and-improved system - but we are each experts in what we know. We need and deserve the respect of being heard by our Governor, the General Assembly and the administrators of entities entrusted to assure order and means in the survival of those they serve.

I am polishing up additional materials for you that I hope to send later today regarding our prior visit and conversation, though meanwhile I wanted to share with you the attached documents forwarded to me by fellow parent Mary K. Short who finally received them yesterday from Brad Dean at the DHHS Office of Public Affairs. Attached are the Public Comment response records from 2011 regarding the 8M CAP I/DD Clinical Policy proposals posted from 5/12 thru 6/26 and from 7/28 thru 8/11 -- a total of 540 comments; 618 pages. Pretty interesting reading. And this is what's missing - the human element.

Comments were made from across North Carolina by many parents and caregivers sharing heartfelt details of their lives as well as professionals, providers, and advocates in the DD field who know well the devastating impact such changes and service cuts would have not only on the recipients and families they serve and care for, but on their small businesses, their livelihood and the lives of staff they employ as well.

My sincerest hope that our elected officials - our Governor and members of the North Carolina Senate and House of Representatives - aspiring candidates, policy-makers, Health and Human Services administrators, LME's, MCO's, and other stakeholders and powers that be take the time now to hear that voice as our lives are in your hands... not merely the quality of our lives but rather our ability to live.

I know I'm asking a lot of you to sit down and skim through a 'book' like this but I also believe you want to assure this thing is done right; currently it's not. There's far more at stake than our State's broken-back budget - A budget crisis which cannot be rectified by plugging the dike with our finger and hoping for the best. Hoping there's not another crack - if we cement this model as it, the levee will break.

Thank you again for your time and attention and thank you in in advance for your considerations and efforts toward improving our State and our lives.

Sincere regards,

-- 

Crystal J. De la Cruz - Hopper

Mother, Advocate & Concerned Citizen

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

2 attachments

20110512-0626 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [598K]

20110728-0811 NC-DHHS-DMA Public Comments 8M CAPIDD.doc [2786K]

NC Chickens Coming Home to Roost

Tuesday's Joint Legislative Oversight Committee on Health and Human Services Meeting (May 15, 2012) focused a great deal on the Department of Justice Complaint (filed by Disability Rights of NC in 2010) and the 16-page DOJ letter of findings resulting from that Complaint. 

• View the DRNC Complaint to the DOJ; September 10, 2010.
• View the DOJ Findings Letter; July 28, 2011.
• View the agenda, materials, presentations, documents and handouts (including the DOJ Findings) from Tuesday's JLOC on HHS meeting; May 15, 2012.

The 53-page Complaint and supporting documents focused on NC's Mental Health System and the service delivery to persons with Mental Illness in Adult Care Homes and other settings across the state, alleging namely the improper placement of mentally ill persons in adult care homes and the failure to provide necessary treatment by mental health professionals as well as supports for community integration and independent living, violations of the Americans with Disabilities Act and Olmstead Act. 

It should be noted that the initial Complaint to DOJ was not news to the State of North Carolina. Here are just a few examples from the 5 page synopsis of NC's mental health care history spanning more than a decade:

• In 2001, North Carolina undertook a massive effort to reform mental health care, including the privatization of many mental health services and the creation of regional management entities that replaced local county mental health agencies. North Carolina’s State Plan 2001: A Blueprint for Change, emphasized the need to provide meaningful integrated services in accessible community settings for adults with severe and persistent mental illness. (page 4)

• In 2003, just two years following the initiation of mental health care reform, “a number of North Carolina communities were already ‘seeing increasing numbers of psychiatrists refusing to see Medicaid patients due to low reimbursement levels.’" (page 6)

• An advocacy group, NC Policy Watch, reports that nearly 1,200 people who were discharged from psychiatric hospitals ended up in homeless shelters in 2007. (page 6)

• A 2008 study commissioned by the North Carolina General Assembly magnified Disability Rights NC’s concern about Adult Care Homes and the lack of true, integrated community placements for adults with mental illness in Adult Care Homes. (page 3)

• To the detriment of community integration efforts, the N.C. General Assembly directed DHHS to eliminated Case Management as a service in 2009 as a stand-alone service to adults who receive mental health services. Some of Case Management’s functions have been absorbed into the new Community Support Team service, but where Community Support Team services are inappropriate or unavailable, Case Management services do not exist. (page 6) 

• The General Assembly’s 2010 Budget Bill instructed the Department to replace Medicaid funded community PCS with two new services: In-Home Care for Children (IHCC) and In-Home Care for Adults (IHCA). The In-Home Care services perform the same function as PCS, but the eligibility criteria for IHC are much stricter. It is estimated that more than one-half of the 37,000 current PCS recipients will not meet the eligibility criteria for IHCA and will subsequently lose the services that allow them to live in their own homes. Earlier policy changes also altered the eligibility requirements to only authorize community PCS when a person required hands-on assistance in performing an ADL. Mental capacity was no longer considered to be a factor in eligibility, but instead could only be taken into consideration after a person was found to be eligible for community PCS, and only then to allow a small increase in the total number of hours. While community PCS were drastically cut and access to the service restricted, PCS for Adult Care Home residents remained intact, essentially unaffected by budget cuts. As a result of this drastic cut in community-based services, thousands of individuals who have been living successfully in the community will be at risk of institutionalization in violation of Olmstead as they will be forced into Adult Care Homes, Assisted Living Facilities, and other non-community settings in order to obtain needed Personal Care Services. (pages 7-8)

The Department of Justice Civil Rights Division, found the adult care homes to be "Segregated, Institutional Settings"... and from their I. Summary of Findings (pages 1-3):

We conclude that the State fails to provide services to individuals with mental illness in the most integrated setting appropriate to their needs in violation of the ADA. The State plans, structures, and administers its mental health service system to deliver services to thousands of persons with mental illness in large, segregated adult care homes, and to allocate funding to serve individuals in adult care homes rather than in integrated settings. Adult care homes are institutional settings that segregate residents from the community and impede residents' interactions with people who do not have disabilities. Most people with mental illness receiving services in adult care homes could be served in more integrated settings, but are relegated indefinitely and unnecessarily to adult care homes because of systemic State actions and policies, which include:

• The State's failure to develop a sufficient quantity of community-based alternatives for individuals with mental illness unnecessarily and indefinitely confined to adult care homes;

• The State's failure to redirect resources already available to expand community-based alternatives;

• The State's prioritization of investment in institutional settings at the expense of community-based settings; and

• The use of policies and practices that cause individuals with mental illness to enter adult care homes to obtain support services. 

Our findings are consistent with the following conclusions made in several State-issued and State-funded reports:

• Adult care homes "are not optimal for community integration" and "[r]esidents of 
ACHs may be cut off from active participation in the local community.

• Adult care homes are "highly likely to qualify as restricted settings'

• There is an "institutional bias" in North Carolina: "People who enter an ACH or  other type of facility can obtain certain financial assistance, services, and supports that are not equally available to people with similar levels of disability and financial need who choose to remain in their own homes'

• "[M]any with mental illnesses continue to live in long term care settings because  there are not yet more appropriate alternatives available to them in their communities'", Adult care homes are not the most appropriate setting for people with mental illness because they are not designed to provide services to allow people with mental illness to achieve greater independence.' and

• Supportive housing promotes community integration and achieves "positive  impacts in terms of cost-effectiveness and improvement in quality of life, housing stability and health and behavioral outcomes for people with mental illnesses, developmental disabilities and substance abuse disorders.

We agree with these conclusions and observations. Reliance on unnecessary institutional settings violates the civil rights of people with disabilities. Community integration will permit the State to support people with disabilities in settings appropriate to their needs in a cost effective manner.

It's not necessarily a matter of the State seeing the error of their ways after 10 or 15 years however, but rather the year-long negotiations with the US DOJ and the knowledge of numerous other states who have also been investigated for similar ADA and Olmstead violations and the financial consequences they are now facing, like New Jersey's 2009 5-year court order for $752 million annually or Georgia's $685 million annual required payment to the federal government, Texas at $464 million, and Virginia, who entered into a total settlement of $2.1 million.

Bottom line: money talks... especially if it's due to come out of your pocket book.

Durring DOJ update portion of the JLOC meeting by DHHS General Council, Emery Millikin, Senator Tommy Tucker  asked if NC had just been sweeping this problem under the rug for 10 or 15 years and "now the chickens have come home to roost?" Attorney Millikin denied any under-rug-sweeping, though did acknowledge, that the chickens of North Carolina have indeed come home to roost.

*I'll be explaining more about what this means to DD families and how this is due to affect our children as Medicaid recipients...

email to Senator Tommy Tucker

March 13, 2012

Sent via email:

To: Senator Tommy Tucker with re-forwarded 02/25 email to Members of the NC Senate and attached letter and enclosures to Governor Perdue per request following the 03/13 Joint Legislative Oversight Committee Meeting on Health and Human Services:

Dear Senator Tucker,

I very much appreciate your taking the time today to speak with me briefly regarding my concerns as a parent of a beautiful little girl with profound developmental disabilities. I know how busy you must be and how full your plate as a member of the NC General Assembly, committee member and vice-chair on the various Health and Human Services related committees, so I value the time you spared for me to chat.

I realize the enormity of the issues at hand regarding the State's exhausted budget and I understand that there are no easy answers for the predicament we as a State have placed ourselves. It is truly frightening on many levels... Realistically, I understand that this train cannot be turned around this late in its travels; it has, after all, been moving in this direction for quite a few years. Though I sincerely believe the destination can be changed.

I am just a mother and advocate; I am only an expert in the life of my child and my role as her mother and protector, and as such am also at a loss for perfect solutions, however, I know very well what the answers are not, because I live it every day.

As mentioned, please see attached my letter and enclosures to Governor Perdue outlining in more detail my concerns and sharing an intimate glimpse into our life and a not-so-dissimilar story to many families across the State of North Carolina. Please, please take a few moments to read the words; they represent the lives of many.

Beyond my personal trials, I feel it's worth consideration that the impact of this new waiver's full implication upon our already strained economy is a topic that should be addressed... The reality of job loss for existing case managers as well as the many small provider agencies which will likely not be able to sustain themselves without the reimbursement rates for case management services. And of course, the effects of these changes upon the CAP workers we families depend upon for survival who already make next to nothing for the invaluable duties they perform, assuming we've found a good one... which I'm afraid goes back to personal trials.

I welcome you to contact me at any time should you have questions or if I can be of any assistance. I would very much like the opportunity to meet with you again for further dialogue at any time that is convenient for you. I can make myself available any time you're in Raleigh and would even be willing to drive to Union County. I work with my husband, a local small business owner, so that occasionally affords me flexibility - to love my child the best way I know how.

Thank you in advance Senator Tucker for your attention and consideration.

I look forward to speaking with you soon.

Kind regards,

--

Crystal J. De la Cruz - Hopper

Mother, Disability Advocate, & Concerned NC Citizen

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