February 24, 2011

Peer Support Services — the Service of the Future…

by Richard Edwards

…and at this rate, it always will be. Ba dum bum. Thank you, thank you…I’m here all week.

North Carolina–attempting to infuse its public system of supports to people with mental illness with a recovery-focused approach, has received Medicaid (CMS) approval to launch a Peer Support Services (PSS) definition.  You can read about it here, starting on page 95. The service, which has been approved in varying models in eleven states, utilizes individuals who have mental health issues themselves, and have successfully maintained their personal recovery, in engaging persons with mental health issues in active treatment.

In the substance abuse field, historically, many substance abuse counselors were, and are, persons in recovery themselves. In my graduate training as a counselor, I encountered many in the SA treatment field who believed you could not be an effective counselor to people dealing with alcoholism and addiction, unless you had a similar background. At the time, I was pretty quick to say that was poppycock–but that was partially because it threatened my role as a professional, without a personal history of addiction and recovery. Over the years, I have come to appreciate that peers in mental health recovery can establish rapport with those they support in a way I will never be able to.  And that rapport is vitally important, because recovery is, in many ways, about showing up–and a qualified Peer Specialist can be particularly effective in helping people see the importance of taking personal responsibility for their health and well-being.

So, from that perspective, I think it’s fantastic that Peer Supports is set to go live in NC in July, 2011.

Unfortunately, Peer Supports may only be “live” in the academic sense–available in theory, but not in practice. Here’s why…

First of all, the rate for PSS ($22/hour) is simply too low to be seriously considered. I’ve spoken with several providers, who all say they would lose significant amounts of money (well over $100k by one estimate) providing this service over a year.  Any provider agency who does their homework will come to the conclusion that the rate is insufficient for the service as it is defined.

Secondly, only CABHA-certified providers (Critical Access Behavioral Healthcare Agencies) can provide PSS, and CABHAs are already straining under the costs of their own infrastructures (see previous post–“Mental Health Reform is Dead!”), not to mention the requirement that CABHAs provide services that also lose money like psychiatric management and outpatient therapy. Given these pressures, it is very unlikely that an organization is going to expand into another service that is so obviously under-funded.

Thirdly, the current definition is very restrictive, and will require intensive management and oversight. For instance–

  • PSS requires a full-time licensed or provisionally-licensed supervisor who cannot bill for any services her/himself;
  • PSS is a short-term service–maximum six months per year, which doesn’t really seem to match up with outcomes typically associated with recovery;
  • PSS has to be provided with outpatient therapy–so only the people you serve on an outpatient basis are eligible, which further limits potential referrals;
  • PSS–because of a weekly, individual supervision requirement–discourages the employment of many skilled Peer Specialists who only want to work part-time; and full-time employment means…
  • Productivity requirements of 60% per week–meaning 24 hours of a 40 hour workweek must be billable activity. Sound easy? It’s actually very difficult when you add travel (this service is community-based); meetings; documentation; supervision; etc…

These requirements may not seem onerous to the casual observer, but add them to insufficient funding, and they present a very high barrier.

Lastly, there are currently few CABHA providers that  have any significant experience with Peer Support Services, unless they have been running an Assertive Community Treatment Team (ACTT), or recovery-focused services such as a Peer Drop-In Center or Recovery Center.  And even if they have been running an ACT Team, they may have as few as one Certified Peer Specialist in their organization.  The point is, few CABHAs really understand Peer Support Services, but they do understand that, poorly handled, the well-being of the people supported, and the people employed, is at risk.

Ironically, many of the peer-run organizations who have the most experience and skill at providing and administering peer support services aren’t qualified to deliver Peer Support Services under the new definition, because they don’t have a Medical Director, a Clinical Director, and a QM/Training Director (i.e., they are not CABHAs).

So, for now at least, the future of PSS in NC remains, well, in the future. And while this might sound like I blame the authors of the defintion at the state, that is absolutely not the case. Service definitions, like the one for PSS, are really not so much definitions as they are conversations, and they occur over years, even decades, between persons served, providers, advocacy organizations, state and federal governments, and the general public.

So rather than throw up my/our hands, my angle is that we need to take the long view on peer support services, because the potential upside for people with mental health issues–indeed all people with disabilities–is too great to be ignored. The current service definition and the accompanying rates–inadequate though they are–are part of the process of bringing these supports to NC’s citizens dealing with mental illness. And this means committing to staying at the table of making peer support services a reality today, with or without the defined service.

But that’s just my angle–what are your thoughts?

February 16, 2011

Circling Person-Centeredness

by Richard Edwards

For those in the field of supporting people with disabilities, you undoubtedly know about Person-Centered Thinking as a movement, and as an approach to providing individualized support services. For those outside of the field, you can read about it here, here and here. But what I want to write about is not so much person-centeredness, as a concept, but how we have tried to enforce it in NC.

For many services that include goal or plan development in NC, a six-hour training course in person-centered thinking is a standard requirement. Recently, the state initiated an additional six hours of training for specific services to persons with mental health issues (children and adults). The reason given–that state personnel had reviewed many person-centered plans that were not, in fact, person centered, and so, they were doubling the training requirement.

This is, I believe, completely wrong-headed. Let me count the ways.

1. Person-centeredness is not, in my experience, knowledge-based; but rather, culture-based. We seem to believe that new staff aren’t “getting it” in six hours, so we’ll make it twelve, which completely ignores the fact that person-centeredness is more about how you relate to people–something that can be explained in a few words, such as “Nothing about me without me,” or, “Do unto others as you would have them do unto you.”  I’m not in any way suggesting this should be sufficient…clearly, it isn’t.

But what you cannot achieve, in any training, is an approach that has to be practiced and reinforced repeatedly over time, because it is contrary to the traditional ways that people with disabilities have been viewed–as helpless, as unable to contribute, as needing to be told what’s best for them. No one comes to this field as a blank slate–these kinds of dehumanizing messages still permeate society. There are, sure, light-bulb moments that can be created in a training setting, but by and large, I’ve found that the person-centered approach is something that has to be integrated into one’s worldview through practice and supervision, not through seminars. Even 12 hour ones.

2. State systems are typically not person-centered. This may come as a shock, given the emphasis, but most of the really important decisions about services and supports are made before a provider ever meets a person seeking services. What services are available? Who can provide it? In what quantity? At what locations? For what diagnoses? By which provider agencies? Using what interventions? Targeting what issues? All of these questions have often already been answered, and then providers are told to be person-centered, when the service system itself reinforces the misguided notion that the professionals know best.

There are some exceptions to this–there is a self-directing option in NCs waiver service array to persons with intellectual and/or developmental disabilities, but this is only available if you have a low annual budget, and only if you have one of the finite number of slots in the program. The really great thing about this program, however, is that it gives the individual and her/his family the opportunity to design a system of supports that meet the needs of the individual, rather than choose from a menu that may or may not fit–resulting in over-serving or under-serving the individual. You can read more about self-directed services at the Center for Medicaid & Medicare Services here, and the World Institute for Disability, here.

3. The state system is not person-centered, part II. There are assessment tools for developing truly person-centered plans, such as Essential Lifestyle Planning and the Personal Outcome Measures. My personal preference is for the Personal Outcome Measures assessment tool, but the truth is, public funding in NC does not cover the cost of developing truly person-centered plans. The amount of time it takes to interview the individual and the person and/or people that know her/him best are not reimbursed adequately, and so of course the process gets short shrift. This isn’t acceptable, but is a much more rational explanation for “cookie cutter” goal plans than assuming the training time needs to be doubled.

(By the by, the cost of doubling the training for person-centered thinking is wholly the responsibility of the provider. There was no rate increase, no cost adjustment, no attempt whatsoever on the part of the state to subsidize this training.)

4. We’re still not measuring person-centeredness. It is what is measured that gets attention, and again, we are confusing process with outcome. We assume that process (12 hours of training) assures an outcome (person-centered goals and plans). That assumption is false. If the state really cares about person-centeredness–it should measure person-centeredness, not training time. The Council on Quality & Leadership (for whom I work part-time, full disclosure) has developed a new accreditation model that focuses on person-centeredness, almost exclusively, because that’s how you get at what really matters to people.

Think about that for a moment…person-centeredness is about getting at what really matters to people. And my angle is that prerequisite trainings as the ones mentioned can only circle around person-centeredness, because the person is typically only present in the abstract. More talking about people isn’t what’s needed. More talking to people is.

But that’s just my angle. What’s yours?

February 3, 2011

Reading the Signs…for Symptoms

by Richard Edwards

A colleague in the field of human services told me this story, and I had to pass it along…

An individual living in a residential support setting had developed a habit, it seemed, of pulling the fire alarm. Since the fire alarm connects directly to the fire department, it was kind of a big deal, and the staff believed he was doing it for the attention and excitement of having the fire department pull up with big red trucks and sirens a-blaring.

So, responding as professionals–as we are wont to do–they called an interdisciplinary team meeting and set up a behavior plan, with charts to track the behavior and hopefully identify key triggers and antecedents to get at what the communicative intent of the behavior might be.

A week later, this colleague friend of mine called the home to ask how it was going, and the staff told her it wasn’t a problem anymore–problem solved.  Surprised, my friend asked what they had done to effect this remarkable change in behavior? What specific intervention had they used to identify and ameliorate the triggers that led to this disruptive, attention-seeking habit?

The home supervisor told her, “Well, I was looking at the fire alarm, and I noticed that it said “PULL” on it.” Like so…

She continued, “So, I put a sign above it that said, “DON’T”…so that it looked like this…”

“…and he hasn’t pulled it since.”

So, all this time, while we, the professionals, were trying to curb a maladaptive behavior, he was probably wondering why no one else was reading the directions.

My angle is that this story illustrates our tendency in human services to look for symptoms, even when none is there; to assume there is a negative aspect to behavior that may be, in reality, the most reasonable response to the messages in our environment.

And, major kudos to the service provider who, as we all should, took the time to look at that environment through the eyes of the person she supports.

January 28, 2011

An Unbalanced Mind–Thoughts on Jared Loughner

by Richard Edwards

(Note: this post probably seems a little out of date, but it has taken me a while to collect my thoughts. Still not sure if I’m there…)

Jared Loughner is, in very plain terms, mentally ill. I’m not a diagnostician, but that seems to me to be the truth of it.

Immediately following the shooting of Rep. Giffords and many others at a speaking event in Arizona, there were emails and blog postings and press releases from NAMI and MHA and the National Council for Behavioral Healthcare around the lack of evidence to show that people with mental health issues are any more violent than the general population.

And research shows that that’s true–you can read about it here, here and here–and it’s important that we don’t paint all people with mental health issues as criminally violent. Studies show that mental illness does not lead to violence, although the likelihood goes way up when you add substance abuse to the mix. So let’s not stigmatize the millions of Americans with mental health issues–many of whom are successfully managing serious and persistent mental illness–by assuming they will–or even could–become the next Jared Loughner.

But in recent weeks, following President Obama’s Tucson speech, I notice the conversation turning to mental health support services….Did we do enough? Should the Community College where Jared Loughner attended classes done more? Should the community have noticed? Should his parents have noticed and taken action? Not so much discussion about whether the national discourse was to blame, but much more about the nitty gritty–at the ground level, what went wrong? This too, seems appopriate to me. In order to prevent the next Jared Loughner, we need to understand the current one.

Several national advocacy agencies are pointing to declining services in Arizona and elsewhere for people with mental health issues as cause for concern. There is also such a thing as mental health first aid, and it’s not hard to imagine how a well-informed community could have recognized the signs of Jared Loughner’s paranoia, before it reached crisis levels, and, given the tools to act, intervened. However, services to people with disabilities and mental illness cost money, and in states across the country, including NC, which faces a 3.7 billion dollar shortfall in FY11-12, money is in short supply.

But doesn’t that sound like we want it both ways? We need to improve access to mental health services for people like Jared to prevent this kind of tragedy from happening–a tragedy which, in the end, also happened to Jared. But how do we advocate for more services on that basis without playing up the potential for violence, and thereby stigmatizing the millions of Americans who deal with emotional or mental health issues everyday and have no propensity for violence whatsoever?

My angle is that Jared’s mental illness had a direct relationship to his crime, but criminal insanity is a legal term, not a diagnosis, and one charged with understandably negative feelings about loopholes and savvy criminals who walk, scot-free. But if Jared Loughner could have been helped with services because he was mentally ill, and if that intervention could have prevented the criminal and insensate act that resulted from his mental illness, and if we think we simply can’t afford those services…

What kind of wall will Arizona build now?

Jared Loughner is, in very plain terms, mentally ill. And his kind of illness took his mind and the lives of 9 people with it, not to mention the nightmare-free existence so many people in Tucson thought they would live until a few weeks ago. In making a way forward from this tragedy, there is, I believe, a middle path–service without segregation; awareness without paranoia; and yes, fiscal restraint without neglect–this is the kind of balance Jared Loughner’s mind couldn’t maintain.

But that’s just my angle. What are your thoughts?

January 27, 2011

And the choir said, “Amen!”

by Richard Edwards

This past weekend, NAMI of Orange County and MHA of the Triangle hosted their annual legislative breakfast. Over 300 people attended, including legislators, advocates, providers, persons receiving services, as well as a variety of local elected officials. It was a fantastic event, and I was proud to be a part of it.

Sitting at the Benchmarks NC table, I got a chance to speak with Rep. Floyd McKissick of Durham, and District Attorney James Woodall of Orange County, about concerns over treating juvenile offenders as adults and what could be done to address this issue.  Having participated in a recent task force themselves, they were fully on board.  In fact, I realized later, everyone present was on board. Of course, there are always disagreements within the mental health community about where dollars should or should not be allocated…Dorothea Dix Hospital, for instance. But generally, we were of one mind, and our thoughts were on protecting human services in the coming budget process.

Leaving the meeting, I had a conversation with Orange County Commissioner, Bernadette Pelissier, with whom I am on the Board of the Orange-Person-Chatham Local Management Entity. She is rotating off the OPC Board, due to other commitments, and while that’s disappointing, she pointed out that she is not the Orange County Commissioner that OPC needs to convince–she is already on board. Just like the people at the Legislative Breakfast–even the legislators, all Democrats, all re-elected, all in the minority–they have our vote. And they’re not in power.

It got me thinking about Chatham County’s recently elected County Commissioner, Brian Bock, a conservative Republican who was elected in November. He has been appointed to our mental health board as Chatham’s Commissioner representative, but he didn’t attend the most recent meeting, or the legislative breakfast, and he hasn’t returned phone calls from the LME Director.

So, even though the NC Association of County Commissioners has mental health as one of its top 5 legislative priorities for this year, I’m guessing Commissioner Bock is probably not on board.

And my angle is that this is a golden opportunity to have a conversation with someone who is not sitting in the choir pit, as it were.  Because as sad as I am that Commissioner Pelissier won’t be on the OPC Board anymore, she isn’t–and never has been–the person we needed to win over, and what’s more, she couldn’t give us access to the community of citizens who don’t see mental health services or substance abuse services or services to persons with developmental disabilities (much of which is paid for through tax dollars) as a priority.

And, so, as we prepare for what is bound to be a very difficult budget cycle–and not to take anything away from the aforementioned legislative event–my angle is that two people who genuinely disagree with each other having a one-on-one breakfast may be more critical than a 300-person rally where everyone is of the same mind.

January 7, 2011

Mental Health Reform is dead. Long live Mental Health Reform!

by Richard Edwards

Today, at a press conference, NC DHHS Secretary Lanier Cansler stated that the era of mental health reform was over. You can read about it here, here and here.  That’s a bold statement, to say the least, bordering on hyperbole, but I suppose it depends upon how you define reform and set the boundaries for the era itself.

Strictly speaking, mental health reform ended when Local Management Entities, previously community mental health centers, divested their mental health, intellectual and developmental disability and substance abuse services in an effort to increase efficiencies by privatizing the system. The vast majority of this transition occurred years ago, from 2004 to 2006 or so. So, yes, that era of mental health reform is over.

Another focus of mental health reform was to bring people living in institutions back into the community–a move that would be supported by the development of community services. This part of reform never happened–there are still many people living in institutions, and there doesn’t seem to be any inclination to support the community-based service capacity necessary to assure a safe transition. So, also, that era of mental health reform is over–in fact, it ended before it ever began.

So, I suppose, the processes that were supposed to bring about system transformation are over, if they ever really began. But the era of mental health reform is emphatically not over.

The establishment of Critical Access Behavioral Health Agencies (Kah-bas), described in the articles and press releases, is a response to the failures of mh reform, but it’s not the end of it. Far from it.

CABHAs are, in many respects, private mental health service providers who provide an array of services to a given population (adults and/or children) in at least one area of the state. Certain services can only be provided by a CABHA-certified agency, including case management and peer support, but also intensive mental health and substance abuse services. Ostensibly, the goal is to create a more professional, more competent provider network. See, when the state ordered the LMEs to divest their services, they didn’t order them (or pay for them) to divest their clinical and medical oversight. Consequently, some providers had it, and some didn’t. There was no requirement to have it, and there was no funding to support it. The CABHA certification requires that level of clinical and medical oversight to be held within the provider agency, and there is a lot of hope–as evidenced by today’s press conference–that oversight will address many of the problems in the system.

And I would agree, it might, but here’s the rub–there is no guarantee as to how many of the some 175 certified CABHA entities will survive the next 6 months. Consider the following:

Each CABHA must have a Medical Director, for which there is no additional funding.

Each CABHA must have a Clinical Director, for which there is no additional funding.

Each CABHA must have a Quality Improvement/Training Director, for which there is no additional funding.

Each CABHA must provide Outpatient Therapy and Psychiatric services, both of which are loss-leaders in the field and are inadequately supported by state rates.

The cost of the three unfunded positions could easily top $300k annually, and even if you take into account that many agencies may have had a Clinical Director or a QI Director, most small agencies were doomed from the start. Out of some 600+ provider agencies, only 175 or so made it through the certification process. Of that 175, it is almost certain that a third to a half will not survive the next year.

You could argue that the 11-12 budget will actually be to blame for that, and that’s not unfounded, but my angle is this…

In trying to assure mental health reform went over smoothly, the state made it too easy for a business to get into the mental health industry, and for the last four years, has been trying to clamp down on this proliferation.  So, call it what you will, but we are still dealing with the effects of mental health reform.

The era of mental health reform may be over, but the vision is still a long way off.

December 10, 2010

A Community Too Far?

by Richard Edwards

What is the price of living in your own community? Surprisingly, it’s both less and more than you might think. In North Carolina and beyond, people with disabilities–not only the aged–are being moved into nursing and assisted living facilities because of inadequate supports for community living. Not only is this a violation of a person’s civil rights according to the Americans with Disabilities Act and the Olmstead Decision, it doesn’t make fiscal sense.

National figures on the cost of nursing home care, versus home health care on a state-by-state basis is available here.  And it’s easy to see that a person can receive 8 hours of in-home care for the cost of living in a nursing facility.  Given that no nursing home provides 8 hours of direct care to its residents, it’s not a hard calculation to see that community care is cheaper, with the added benefit of being legal.

So, that’s why community care is less expensive.

Jim Shapiro from NPR, has an excellent story, here, regarding young adults with disabilities in nursing homes.  The persons interviewed in the story live in Georgia, which is significant, given the similarity of the federal lawsuit against NC’s mh/dd/sa system based upon its failure to provide community living options.

Still, national data shows that utilization of nursing homes for care of young adults is actually on the rise, despite many studies which demonstrate that institutional care is more expensive than community-based care. The problem has always been that you have to pay for the services in the community concurrently with the institutional services in order to build capacity. NC had the opportunity to do that a few years ago, with a rare one-time surplus, but didn’t take advantage, and now we are still facing a dearth of community options and an over-reliance on state hospitals. 

That’s why community care is also more expensive.

As noted in an earlier post, the federal investigation into NC’s mental health system was prompted by a complaint by advocacy group Disability Rights North Carolina, which contends that the state is violating the Americans With Disabilities Act by failing to provide proper housing for the mentally ill. Recently, Secretary Lanier Cansler told NC legislators that he believes the state is moving towards the community-based services that are necessary to prevent NC’s over-reliance on institutional care.  That may be so in some cases, but at the same time, NC is not directing money away from the institutions. Far from it.

My angle is that this the state is caught between the “community care is less expensive argument” rock, and the “funding parallel systems–even for a few years, is much more expensive” hard place. And secretly hoping the lawsuit will jar us all loose.

December 1, 2010

A Lack of Southern (Psychiatric) Hospitality?

by Richard Edwards

Last week, it was announced that the US Department of Justice has filed a lawsuit against NC, alleging that thousands of people with mental illness are being improperly housed in Adult Care Homes, in violation of the Americans with Disabilities Act and the Olmstead Decision.

Rose Hoban has a great write up of the lawsuit here, but the link to the Georgia settlement isn’t working, so you can read more about that here.

Chris Fitzsimon has a post on the general state of things here, but, in my opinion, his posts are often a bit over-simplified. When talking about the public mhddsas system, it is never good to start a sentence with “It sounds like…”  What it sounds like is just a surface representation of what it actually is, Mr. Fitzsimon. (I would have commented on his post at his site, but his posts don’t allow for commentary, so I’m doing it here.)

The timing of this lawsuit coincides with the closure this month of Dorothea Dix Hospital, raising concerns that the state does not have enough hospital beds. That people with serious mental health issues are languishing in emergency rooms is shameful, and dangerous, but my angle is that more hospital beds is not, in fact, the answer. 

What is missing when we try to fix a struggling community-based system with more inpatient facilities? You can bet Georgia did not resolve their lawsuit by opening more inpatient facilities, and North Carolina shouldn’t–and won’t–either.

December 1, 2010

Just because they can…

by Richard Edwards

According to new statistics released this week, hate crimes against people with disabilities are rising.  I had to make the link eight words long for emphasis–hate crimes against people with intellectual and physical disabilities.  Overall, hate crimes are on the decline, down perhaps 12% year to year, but hate crimes against people with disabilities are rising by roughly the same amount. Now granted, it’s a small number–97 such crimes were reported in 2009. However, there is evidence to suggest that such crimes are vastly under-reported.

Hate crimes against people with disabilities in the UK is getting more attention, and according to a report by the Equality and Human Rights Commission (EHRC), people with disabilities are four times more likely to experience violence against them than non-disabled persons.  While that research is focused on the UK, it suggests to me that the number of hate crimes against people with disabilities in the US has to be higher than 97 annually.

My first angle on this is that it illustrates why social capital is so important–because crimes of any sort are less likely to happen to people who have friends, family and community watching out for them.  This is a crime that occurs because someone has deduced that a person with a disability is an “acceptable target”, which brings me to my second point.

My second angle on this is that if you are someone–and if you’re reading this, I doubt very seriously that you are–committing crimes against people because they have a disability, then hear this: YOU ARE A [edited] LOSER. There, I said it…Because I don’t know any other way to say it.

November 30, 2010

Miangle 2.0

by Richard Edwards

Recently, I changed my twitter handle to @miangular (partly because @miangle was taken), but I thought it was time I changed the blog name as well to match the whole theme.  The larger part of this is just consistency, and the importance of it when trying to deliver a message–in this case, my advocacy for people with disabilities and the services and supports they need to live fully in their communities.

So, the look is different, but the content will be similar–advocacy, non-profit leadership and personal interests. Same as the old boss, I suppose, but still boss.