Today, I read the text to the audio article by Rose Hoban on WUNC. Her article, “What Kind of Housing for People Who Have Mental Illness?” certainly portrays the face of problem, but we have to ask, who will actually confront a system, a legislature, and a state culture that has for years condoned such inhumane regard for humanity?

Many Players Maintaining Adult Care Home  Situation                                                                                                                                           This situation is complex.   Ms. Lou Wilson, director of the long term care lobby for many years, was quoted in the article complaining that Disability Rights NC, our federally-funded Protection and Advocacy agency, chose to evaluate and report on fifteen of the worse adult care homes in the state.  What?  We have allowed fifteen plus settings like these to continue to rake in mounds of money that could have been spent on helping people to have their independence, to plan their own days, to function in communities, to finishing their educations (yes, many residents are that young) or return to work?   Shame on all of us asNorth Carolina citizens, and shame on Ms. Wilson’s organization if its standards for caring for our peers are so low!

And what about getting valuable services into the adult care homes?  What planning has taken place–what policy changes have been made between the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services, the Division of Health Services Regulation, and the Division of Medical Assistance to improve the chances that persons with disabilities could indeed get the services they deserved?   NONE.  In fact, I did a review of Administrative Rule for the NC Council of Community Programs with then-director Carol Duncan Clayton in 2007.  The rules actually articulated that a resident had a right to services and that he or she has a right to choose who provided services.  But was there ever a plan developed that would cross-walk service needs so that all divisions implicated would ensure that persons’ rights were respected?  NO. 

In fact, the Consumer and Family Advisory Committee at CenterPoint Human Services and other community members sat down together to review proposed rules and make recommendations that would ensure that persons could receive rehabilitative and better psychiatric (medical) services.  This was in 2006.   As chairperson,  I soon received a letter from the Division of Health Services Regulation (then called Division of Facility Services) stating that we needed to address our concerns to Mr. Moseley, the director of DMH, because “these settings are intended for the frail elderly and not for persons with mental illness.” 

 AH, there’s the rub!  There could be no solution because no one would own the problem.  It is as if it was always someone else had set this monstrous atrocity into motion and ‘we can’t do anything about it.”

By the way, by this point, I had already had a telephone call with Mr. Moseley about this issue.  He said there was nothing he could do about it because this was already established between DHHS, the legislature , and CMS that adult care homes “are community settings.”  WHAT?  We have moved people from publicly owned facilities (state hospitals) directly to privately owned facilities where they still have very few rights and are certainly not welcomed out into their local communities in most settings.  I would challenge the legality of adult care homes as community settings.   So with that, DMH felt it was absolved of any responsibilty to change things.

So then we looked at some of the grants coming from The Center for Medicare and Medicaid (CMS).  Long time advocate Joe Donovan and I tried to urge the Division of Long Term Care to consider targeting NC’s problem with adult care homes when considering a grant proposal.  Unfortunately, it seemed that this division of DHHS was another agency that habitually looked to assisting the elderly at the expense of the growing majority of mental health clients and those with developmental disabilities that were filling the facilities intended for “frail elderly”    There were not even representatives from the Division of Mental Health at these CMS grant proposal planning meetings!   But I was persistent!  I finally asked the state-contracted group leaders if they would consider as an objective for a grant the transitioning of persons from these facilities to independent living out into real community settings.  I would get support from both sides of the legislative aisle from persons who could foster a bill to strengthen that activity.  At that time, CMS was looking at such issues nationally.  I had a copy of the letter to state Medicaid Directors that urged states to use grants and waivers for transitioning and supporting people toward independence.  The planning group agreed.  I went to work.  I was able to find that both Representative Verla Insko and Senator Ham Horton (whom I do miss) would be willing to work for such a bill.  I presented this in a letter to her.  But Secretary Hooker Odom declined.  (Personally, I will always wonder if she were too enmeshed with supporting legislators who were, themselves, entrapped by the large contributions of the long term care lobby.   Guess we’ll never know.)

With regard to the legislature, where would I start?  I remember telling one senator how, when I had been a nurse at a correctional setting, one of my young inmates had been jailed twice because of striking others in adult care homes when he was psychotic.  His mother tried so hard to find case management that would assist with services.   Her heart was already broken for her son at this point, and her own local LME would treat her with disdain when she kept reaching out to it for services.  Years later, I would write a letter to that senator telling him that the young man has since been charged with the killing of an elderly resident in the me facility where he lived.  He had been hallucinating, trying to kill instead the mice he thought were attacking her.  No mental health services.  And often improper psychiatric medications.  Some homes have been negligent to return people to the medications ordered when the homes have run out or if the medication is not in their formulary. 

I got no response from that senator, but I do recall his concern about job losses to staff in those facilities (he must have a lot of them in his community, because most of them have a meager handful of staff).

Our legislators need to think again about what some organizations’ campaign donations buy.  There is a legacy of legislators protecting institutions which have resulted in dismal circumstances for our citizens.  In this case, this dark legacy had already existed for about fifteen years when I started advocating.  I heard about it from many seasoned individuals inRaleighwho warned me that I was beating a dead and buried horse. 

 So Where is the Public’s Trust?                                                                                      After attempts at participating one more time on a grant planning committee, I have put my advocacy focus elsewhere, trying to support self- and systems advocacy through the voice of the consumer. 

But what are people to think if at every turn, caring NC citizens and advocacy groups are blocked from penetrating the status quo in this matter?  All we can assume is that our state culture must be one that condones taking liberty, the pursuit of happiness, and yes, life, from others because they have disabilities. 

It is my hope, my prayer that in response to the Department of Justice investigation, the current administration at DHHS will prove me wrong.  It needs to evaluate how the systems have worked together to produce this terrible situation, and it needs to plan for cross-departmental discussion and actions that will reflect the values of North Carolina citizens.  It needs to ensure that there are no gaps in the circle of accountability that allow for the finger-pointing instead of problem solving.  And finally, it can present a strong case to the legislature that doing the right thing will cost less to the people of North Carolina. 

I pray also for encouraging news that the will ensure that we have the funds we need to start ending the shameful pattern of disregard.   The lives of more than 6000 North Carolina citizens are at stake.

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WHAT A SPRING!

(4/7)  So much happening, it has been hard for NC CANSO and other organizations to stay on top of issues, share them, and be responding to them in time to make an impact!  But here are just a few things that have been happening.     

• The release and reconsideration of the Service Definition (that is, the service as it is defined so that it can be reimbursed with Medicaid dollars) for Peer Support. 
• The decision by DHHS and the legislature to expand a “Piedmont-style waiver” across the state of North Carolina which means reducing management entities from the twenty-plus “LMEs” which we now have to a much reduced number of waiver administrators.   So, just what is a waiver?  Read more here.
• Town Hall Meetings by The North Carolina Coalition, an advocacy consortium that, among other things, works to ensure that services are adequately funded,  have been held regionally across the state.   And consumers are representing their own interests more than ever . . .  
• Integration of care (mental health and primary health) is coming, and the federal goverment is surely promoting it, asking for consumer advocacy organizations to help ensure that mental health care is fully addressed in Health Care Reform.  There has been some well-considered discussion among consumer leaders across the country.   How will consumers be involved in shaping the future?  Dr. Daniel Fisher is among the leaders who are working on some ideas that can be used across the country.  We look foward to learning more and will surely share information as we get it!

The Coalition in North Carolina represents over forty advocacy organizations across our state aimed at promoting an optimal publicly funded service system.  Recently it hosted regional “Town Hall” meetings aimed at updating and educating communities about how they can advocate for a strong budget for public mental health, intellectual and developmental disabilities, and substance abuse services.

The Town Hall meeting held in Winston-Salem was the place to be for a clear and brief presentation by Ms. Robin Huffman, the executive Director of the NC Psychiatric Association.  But further, last Thursday evening’s meeting was a night of inspiring and compelling comments by community members, especially those persons who themselves depend on public services.  But beyond that, the attentive participation by four of our seven legislators, Senator Linda Garrou, Representative Bill McGee, Representative Earline Parmon, and Representative Larry Womble was greatly appreciated by their constituents. 

More than 110 area citzens attended this lively meeting, and I hope you will allow me to say that I was personally heartened by how vocal our community has become through the years!  So many of the most important people–service users–asserted their concers and seemed to sense that their input would matter at this meeting.  What a refreshing time!

Since the meeting, several have noted their own observations about the night.  First, thanks to the welcoming and responsive spirit of our local Mental Health Association, directed by Mr. Andy Hagler, several people who meet for support there spoke to how much they have grown because of the mutual support through the groups offered–at no charge–at the local Mental Health Association.  And one of these individuals, who also serves as a peer support specialist, clearly addressed how much his work has meant to his wellness!  So this was a meeting where legislators, a county commissioner, an LME director, and many other community members learned from people who are walking down their own paths of recovery about the value of mutual support and community integration. 

A second thing that several noticed was that some of the most successful and consumer-respecting initiatives in the community were those that resulted from the hard work of local non-profit organizations and volunteers.  There was little said about public services or local system issues that was positive (not to say that there are no positives).   But what a pardigm shift–yet how will we sustain the local community activity that has so greatly improved persons’  lives when organizations must find funding to continue? 

As to the budget, the message from so many speakers was clear:  We need the funds to ensure that good services, including peer support, are available.   But as many seemed to indicate, the accountability is as important as the funding–for even ‘consumers’ know when the dollars are paying for too much non-service activity or fringe benefits to administrative staff.  They see that foolish wasteful spending must stop and that change was needed to ensure that public dollars are used for public services. 

I am thankful that The Coalition chose our community for this important event and especially that several elected officials decided to come on out and learn from local citizens.  Now it is time for us all to be writing and calling our legislators before they have totally shaped a budget (which will presumably be passed by June 30.)  Time to get to work!

The North Carolina Department of Health and Human Services announced last week that public MHDDSA services will be administered through a smaller number of administrative organizations. Additionally, services will be funded using a “waiver” which will mean that systems will have to become much more standardized in how they serve communities. In other words, we will eventually not have LMEs but will have a smaller number of regional administrators.

A Medicaid waiver means that a regional service administrator is given a set amount of funding and can use these dollars more flexibly and presumably more responsively than in our original way of funding services (where the money is specified for its use and less flexible). Of course, this is a very simplistic explanation. But what is known by people across the country is that waiver success depends on developing a community-level process that includes consumers and family members that inform the system of local needs in an ongoing way.

The Piedmont waiver has been a good example of this, some have said, especially in the area of developmental disabilities. Hopefully, it will continue to develop and strengthen processes that take direct input from consumers and families across all disability areas so it can become even more responsive.

Some people feel this move to waivers is wonderful news. They feel that in too many communities, the LME system has not had good enough results for the taxpayers’ expense and that they have not really helped consumers to thrive. So funding fewer administrations and moving to more responsive service planning sounds really great to many in our state.

Of course, waivers are not a cure-all. We may find that fewer people are found eligible for services in this process. On the other hand, a really good manager can use finite resources to accomplish more than a mediocre manager if he truly listens to his or her community to best understand its needs and how to maximize resources by working with other community assets.

To some people, this move to waivers is wonderful news. They feel that in too many communities, the LME system has not had good enough results for the taxpayers’ expense and that they have not really helped consumers to thrive. So funding fewer administrations and moving to more responsive service planning sounds really great to many in our state. Of course, waivers are not a panacea. We may find that fewer people are found eligible for services in this process. On the other hand, a really good manager can use finite resources to accomplish more than a mediocre manager.

What will be so important is that the best LMEs are awarded waiver management contracts. This means that the evaluation of proposals must be both intensive (deep evaluation based on community stakeholder report of community level MHDDSA history) and extensive (broad).

It means that many factors should be considered before selecting a waiver administration site. For instance (readers can problably think of more):

1. Historically, how well have funds been utilized? How much funding has been reverted to the state in the past five or so years? What innovative services developments have arisen through creative management and partnering? How are service gaps in local systems discovered? How has the LME responded to these? Who informs the LME BOD of community deficits or offers ideas for solutions?

2. How effective are partnerships between the LME and community agencies? What are funds granted to them actually purchasing? Are the results of these purchases measurable in terms of improving the lives of persons with psychiatric, developmental, or addiction related problems? Are contracts results-directed, with outcomes set as part of the contract and accountability held for these outcomes?

2. How many people are showing up in local emergency departments? Of these, how many of these actually need emergency interventions with inpatient care? How many are using state hospital beds? How does an LME rate as far as hospital versus community services?

3. What initiatives have taken place in the past five years that have been client-informed and which have resulted in improved quality of life and better health (mental, physical).

4. Have there been innovations developed to help with the folks with developmental disabilities who do not get their services through CAP?

5. DHHS should look at the LME’s approach to quality improvement not from a compliance perspective but from a results perspective. Is the process of a given LME’s quality improvement yielding better service results over time? What is the evidence?

6. How much “genuine welcome” had been extended to the consumer community to ensure that the customer’s voice informs system quality? Has the LME been open, transparent, and engaging with its local consumer base, or is it more insulated in how it does its planning?

Change certainly takes patience, and progress requires patience and hard work.  Stay tuned to learn how you can advocate locally and at the state level for changes that bring responsive innovation and solutions.