Posts tagged ‘People with Disabilities’

September 12, 2011

NC Medicaid Gets What It Pays For…

by Richard Edwards

Last week, I attended a meeting of the Medical Care Advisory Committee, a federally-mandated group whose purpose is to advise the state on services it covers through Medicaid and Medicare.

This group–made up of physicians and healthcare professionals from across NC–has an unenviable task: making suggestions on where to cut some $350 million worth of Medicaid spending in North Carolina. But as Dr. Gray (Division Chief for DMA) pointed out, it was not the MCAC’s job to decide cuts, only to advise.

I’m sure that was a load off their shoulders, but it’s still obviously a task the group takes seriously, and not an easy one. DHHS Secretary Lanier Cansler explained at the outset that some $118 million of the total projected cuts could not be achieved because they were either duplicated elsewhere in legislation (and so, counted twice), or because they were tied to federally-mandated services (which can’t be cut).

As the DMA presentation points out, however (warning, pdf), NC isn’t exactly under-spending, but we are under-performing. Data from the Kaiser Foundation indicates that NC is actually on the high end in terms of per member spending, and in terms of spending on optional services. Despite this, NC ranks on the low end where health outcomes are concerned, according to another national study.

The group talked at length about why this is, and, what it suggests about where our spending priorities need to be. The final portion of the meeting was set aside for public comment. DMA is, I think, to be commended for this, because they certainly do not make their task–or the task of the committee–any easier by hearing from the public who will be negatively impacted by their decisions. But those stories–moving though they were–kept bringing me back to the original question…

If we’re spending more than average on services, but we’re getting less than average on health outcomes–what are we spending our money on? Certainly, we have an opportunity to learn from other states who are spending less and getting more (or spending the same and getting more), but I think it also points to a central issue in human services in general, and particularly in behavioral health. We are paying for the wrong thing.

Check out this article, by Robert Kaplan and Michael Porter, about how we establish cost for services in healthcare. Their focus is primarily medical, but it’s worth a read for social sectors, too. In the article, the authors point to poorly-measured outcomes as one of the main drivers of escalating healthcare costs in this country. Essentially, we have a system that perversely pays for services instead of outcomes. There is no incentive, the authors explain, to heal people quickly and effectively, because that’s not what we’re paid for…sound familiar?

This might seem horribly cynical, but ask yourself this question–if you, dear reader, as a human services provider, were paid based only upon the positive impact you helped create, as opposed to the amount of time you spend with people, how would you behave differently as an organizational leader?

I believe we’re still several years away from this, but when the day comes that Medicaid and other payer sources pay for outcomes instead of processes, my angle is that we will have a groundswell of evidence-based practices, instead of top-down (and unfunded) mandates; we will have a much more community-based system, instead of so much institutional bias; and we will be much more social capital-oriented, instead of paid support-driven.  And tumultuous as the transition will be, that will be a good day for all people.

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


May 4, 2011

North Carolina ranks 8th in…Institutional Bias??

by Richard Edwards

Recently, United Cerebral Palsy issued its national report card on inclusion, ranking the fifty states on their attempts to serve individuals with intellectual and/or developmental disabilities in community and family settings.

North Carolina ranked 43rd over all. You can read the press release here, and the complete report here. (Warning: pdf) Most notable to me is that NC continues to rank in the top 10 states nationally in terms of the number of people–over two thousand–housed in large institutional settings (16+ residents).

And while several states have closed their institutions entirely (Go, “Bama!), North Carolina is rebuilding ours.

Just this year, Governor Perdue participated in the ground breaking of a replacement for Cherry Hospital in Goldsboro, NC. And recently, the NC Department of Health & Human Services began seeking bids for the reconstruction of Broughton Hospital in Morganton, NC–a project with a total budget of $154,772,802.

Why, in the face of data that supports downsizing institutions as good policy, and the clear example of our neighbor states, do we continue to invest in these types of large congregate settings? Even with a federal DOJ investigation pending against NC regarding our failure to provide community-based living options for people with disabilities as required by the ADA and the Olmstead Decision?

I am not saying that hospitals are not an important part of the continuum–they are. But consider this–for what we are spending to build a hospital in Morganton, we could invest in community hospital beds in Charlotte and Asheville and serve the vast majority of people who are displaced to that state hospital.

My angle is that we do it, not because it’s truly needed, but because jobs are truly needed. Communities–like Goldsboro, and Morganton, and Butner–depend upon the institutions in their community for employment. Not to mention the construction work that goes into maintaining facilities that are falling apart.

And the problem with this seemingly symbiotic relationship is that people with disabilities are stuck in the middle. As long as we continue to divert funds to institutional care, there will never be enough money to support people living in the community. And as long as there isn’t enough support for people to live in the community, there will always be a need for institutional care.

NC’s people with disabilities deserve better than 43rd in the nation.

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?

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.