
{"id":3667,"date":"2008-10-16T08:29:07","date_gmt":"2008-10-16T16:29:07","guid":{"rendered":"http:\/\/www.carrborocitizen.com\/main\/?p=3667"},"modified":"2011-12-15T12:05:45","modified_gmt":"2011-12-15T17:05:45","slug":"breakdown-is-our-best-enough","status":"publish","type":"post","link":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/2008\/10\/16\/breakdown-is-our-best-enough\/","title":{"rendered":"Breakdown: Is our best enough?"},"content":{"rendered":"<p><strong>By Taylor Sisk<\/strong><br \/>\n<em>Staff Writer<\/em><\/p>\n<p>XDS Inc. in Chapel Hill is a rare mental health care success story, an organization that has managed to navigate North Carolina\u00e2\u20ac\u2122s post-reform mental health care morass. <\/p>\n<p>But it barely hangs on. Challenged each day by sheaves of bewildering paperwork and limited funding, it\u00e2\u20ac\u2122s a \u00e2\u20ac\u0153day-to-day struggle,\u00e2\u20ac\u009d says XDS executive director Thava Mahadevan, to stay afloat and continue providing very critical treatment, rehabilitation and support services.<br \/>\n<!--more--><br \/>\nXDS was launched a decade ago under the umbrella of the Orange Person Chatham (OPC) Area Program, the state-administered agency that prior to the privatization of mental heath care services, as mandated by House Bill 381 in 2001, provided those services for the three-county region. XDS stands for \u00e2\u20ac\u0153cross-disability services\u00e2\u20ac\u009d and its objective is to provide a comprehensive suite of outpatient services with a team of professionals assigned to each client, available 24 hours a day.<\/p>\n<p><strong>Despite resistance, success<\/strong><\/p>\n<p>The approach is called assertive community treatment (ACT). <\/p>\n<p>ACT is considered evidence-based treatment for people with severe and persistent mental histories \u00e2\u20ac\u201d those diagnosed with schizophrenia, a bipolar disorder and, in some cases, major depression \u00e2\u20ac\u201d and is particularly designed for those with dual disorders, which would include a substance-abuse problem. The term \u00e2\u20ac\u0153evidence-based\u00e2\u20ac\u009d means that the ACT model has consistently shown success in the treatment of clients with these disorders.<\/p>\n<p>The ACT model was introduced in the early &#8217;70s by a group of mental health care professionals at the Mendota Mental Health Institute in Wisconsin. <\/p>\n<p>Across the country, a deinstitutionalization movement was afoot, with patients being moved out of state institutions and into communities that were often unprepared to meet their needs. The Mendota team sought to fill that gap by better understanding why patients who seemed to do very well while within an institution were nonetheless being recommitted on a rapid and regular basis. <\/p>\n<p>Obviously, these people needed professional care, but what was the sum of their needs?<\/p>\n<p>The objective was to replicate a mental health care ward to include a team of providers that would include a psychiatrist, psychologist, nurses, social workers, perhaps a vocational specialist, working with a small group of patients to provide flexible and around-the-clock care. <\/p>\n<p>They recognized, says Mahadevan, that \u00e2\u20ac\u0153when patients were discharged, they didn\u00e2\u20ac\u2122t know where to go to get their medications. If they had a problem at three in the morning, they didn\u00e2\u20ac\u2122t know who to call. So they said, \u00e2\u20ac\u02dcWe need to replicate what we do in the hospital,\u00e2\u20ac\u2122 and they called it \u00e2\u20ac\u02dchospital without walls.\u00e2\u20ac\u2122\u00e2\u20ac\u009d <\/p>\n<p>There are now ACT teams in most every state and in other countries, including Canada, Australia and Japan.<\/p>\n<p>In the mid-&#8217;90s, Mahadevan, who was a graduate of UNC\u00e2\u20ac\u2122s rehabilitation counseling program and had done his internship at John Umstead Hospital in Butner, came to work at OPC as a case manager. He had become intrigued by the ACT model and believed it was needed in this area. In 1997, he and a few colleagues traveled to Delaware to see an ACT team in action, and were impressed. <\/p>\n<p>\u00e2\u20ac\u0153We thought it was amazing just to see how things were happening,\u00e2\u20ac\u009d Mahadevan recalls. \u00e2\u20ac\u0153People were out and about. One of the biggest contrasts was that clients weren\u00e2\u20ac\u2122t coming to the mental health center, staff were going out to see them.\u00e2\u20ac\u009d<\/p>\n<p>Despite resistance from the more traditional-minded mental health community, who, Mahadevan says, told him that \u00e2\u20ac\u0153this is not how we do things,\u00e2\u20ac\u009d a cross-disability program using the ACT model was launched at OPC and proved successful.  <\/p>\n<p>Then came the call from Raleigh for reform \u00e2\u20ac\u201c for the divestiture and privatization of the mental health care services area programs the state had previously provided.<\/p>\n<p>Margaret Brown was on the Orange County Board of Commissioners at the time and she began visiting with local mental health care providers to explore with them the possibility of turning themselves into nonprofits to continue providing the services they had under the old model. <\/p>\n<p>Brown now recalls that after a talk she had given, Mahadevan came up to her and said, \u00e2\u20ac\u0153\u00e2\u20ac\u2122Are you serious? You really think we could turn ourselves into a nonprofit?\u00e2\u20ac\u2122 And I said, \u00e2\u20ac\u02dcI don\u00e2\u20ac\u2122t see why not.\u00e2\u20ac\u2122\u00e2\u20ac\u009d<\/p>\n<p>XDS functions today as a nonprofit mental health care provider, working to meet the full range of mental health care needs of some 150 clients, many of whom have failed in other, less-intensive outpatient programs. Mahadevan and the colleagues who joined him from OPC never seriously considered functioning as a for-profit entity.<\/p>\n<p>\u00e2\u20ac\u0153Clearly, this is not the business to make money in,\u00e2\u20ac\u009d he says. \u00e2\u20ac\u0153We just felt that if you have shareholders waiting for you to make a profit, it\u00e2\u20ac\u2122ll be a huge conflict of interest\u00e2\u20ac\u009d \u00e2\u20ac\u201c balancing the financial bottom line against the objective of providing truly comprehensive, critical care.  <\/p>\n<p>\u00e2\u20ac\u0153How Thava does it,\u00e2\u20ac\u009d says Brown, \u00e2\u20ac\u0153I will never know. But he does it. <\/p>\n<p>\u00e2\u20ac\u0153It\u00e2\u20ac\u2122s just amazing what he\u00e2\u20ac\u2122s done.\u00e2\u20ac\u009d<\/p>\n<p><strong>\u00e2\u20ac\u02dcEngaged observers\u00e2\u20ac\u2122<\/strong><\/p>\n<p>Valerie Kramer \u00e2\u20ac\u201c whose son Jeff\u00e2\u20ac\u2122s experiences with the state mental health care system we\u00e2\u20ac\u2122ve been chronicling in <em>The Carrboro Citizen<\/em> \u00e2\u20ac\u201c doesn\u00e2\u20ac\u2122t doubt that Mahadevan and his team have her son\u00e2\u20ac\u2122s best interests at heart.<\/p>\n<p>But she\u00e2\u20ac\u2122s frustrated. She has health issues of her own to deal with, and the net effect is one of near-debilitating exasperation \u00e2\u20ac\u201c \u00e2\u20ac\u0153Why can\u00e2\u20ac\u2122t my son be treated? Why can\u00e2\u20ac\u2122t he be made more whole?\u00e2\u20ac\u009d<\/p>\n<p>Jeff has been with XDS for just over two years and prior to that was on a merry-go-round of referrals, commitments, steps forward, leaps back. <\/p>\n<p>At 19, five years ago, Jeff was diagnosed with paranoid schizophrenia. But he doesn\u00e2\u20ac\u2122t believe he\u00e2\u20ac\u2122s sick \u00e2\u20ac\u201c a common, though not universal, symptom of schizophrenia \u00e2\u20ac\u201c and refuses to take his prescribed medication.<\/p>\n<p>Jeff\u00e2\u20ac\u2122s psychiatrist at XDS, Carol VanderZwaag, acknowledges that not a lot of progress has been made with Jeff, but that the team has built a relationship with him, \u00e2\u20ac\u0153and that\u00e2\u20ac\u2122s very, very important. &#8230; Without that, there\u00e2\u20ac\u2122s not much else you can do.\u00e2\u20ac\u009d <\/p>\n<p>\u00e2\u20ac\u0153The only thing that [Jeff] rejects about us,\u00e2\u20ac\u009d she says, \u00e2\u20ac\u0153is our opinions\u00e2\u20ac\u009d \u00e2\u20ac\u201c that he has an illness and that it would serve him well to take his medication. In fact, VanderZwaag says that she believes Jeff could function relatively well in the community under medication.<\/p>\n<p>\u00e2\u20ac\u0153I think the thing that\u00e2\u20ac\u2122s somewhat unique [about Jeff],\u00e2\u20ac\u009d VanderZwaag says, \u00e2\u20ac\u0153is that he can go long periods of time where he functions. &#8230; He can go long stretches kind of hanging in there. And that\u00e2\u20ac\u2122s good, and that\u00e2\u20ac\u2122s bad. It leaves very few openings to try to help him maybe do something different. It re-enforces his concept that nothing is really wrong.\u00e2\u20ac\u009d<\/p>\n<p>Without that acceptance, VanderZwaag says, the team can only strive to maintain contact with Jeff, try to keep him in the housing they\u00e2\u20ac\u2122ve secured for him and hope that he remains relatively safe. <\/p>\n<p>They are, essentially, says VanderZwaag, \u00e2\u20ac\u0153engaged observers.\u00e2\u20ac\u009d<\/p>\n<p>Which is difficult for his mother to accept.<\/p>\n<p>\u00e2\u20ac\u0153I think they are very good at what they do, when they do it,\u00e2\u20ac\u009d Kramer says.<\/p>\n<p>Mahadevan acknowledges that it will often seem to family members that XDS is not doing enough. That\u00e2\u20ac\u2122s frustrating to him not only because his organization just became nationally accredited and meets very high standards established by a coalition of ACT providers, but also because he too struggles each day with how to most effectively deploy his team in order to provide all the services he considers vital \u00e2\u20ac\u201c and stay in business.<\/p>\n<p>When the program was still within OPC, prior to reform, an administrative staff handled the paperwork; his team concentrated solely on providing care. Now they have to do it all, or not get paid. <\/p>\n<p>The majority of XDS\u00e2\u20ac\u2122s funding comes from Medicaid, and Medicaid, says Mahadevan, \u00e2\u20ac\u0153is looking for every possible reason not to pay. These are authorized services; our clients have Medicaid.\u00e2\u20ac\u009d <\/p>\n<p>So no problem, right?<\/p>\n<p>\u00e2\u20ac\u0153I would say there are about 60 or 70 different steps that you can screw up before you get paid,\u00e2\u20ac\u009d says Mahadevan. Payments, which are processed through an organization called ValueOptions, are then slow in arriving and only then in increments. Moreover, with the documented abuses of our reformed health care system, those dollars are being extended increasingly begrudgingly. Payment rates for ACT services have recently been reduced. <\/p>\n<p>Meanwhile, Mahadevan must keep the ship afloat, which entails long hours on the job.<\/p>\n<p>\u00e2\u20ac\u0153Where do you find the time to do this work?\u00e2\u20ac\u009d Mahadevan asks. \u00e2\u20ac\u0153Do you ask staff to stay to 7:00 or 8:00? Easily, I work 75 to 80 a week, every week; there\u00e2\u20ac\u2122s no way this work can be done without spending that amount of time.\u00e2\u20ac\u009d<\/p>\n<p>Then, he says, to have to explain to a mother, \u00e2\u20ac\u0153&#8217;I\u00e2\u20ac\u2122m sorry; I just ran out of time to work with your son today.&#8217; It\u00e2\u20ac\u2122s so hard.\u00e2\u20ac\u009d<\/p>\n<p><strong>Failure to communicate <\/strong><\/p>\n<p>Schizophrenia goes nowhere fast. Progress, says VanderZwaag, is measured not in days or weeks but in years.<\/p>\n<p>The rub here though, as Mahadevan points out, is that we\u00e2\u20ac\u2122re operating in a system extremely ill suited for such pacing. <\/p>\n<p>For example, Medicaid demands that he report on the progress of his patients on a monthly basis. The paperwork involved is enormously time consuming; reporting quarterly or semi-annually, he suggests, would be much more practical.<\/p>\n<p>More broadly though, mental health care reform in North Carolina was in theory going to direct more patients away from the state institutions to be cared for within their communities, where private firms would be competing to provide more and better services. In practice, our state institutions are now more overcrowded than before and most of those private firms have learned that the only way to make a profit is to cherry-pick services: this one is potentially profitable; that one, never. <\/p>\n<p>The result, critics say, is an overburdened system on the brink of total collapse, a conveyor-belt system demanding quick fixes, when, in matters so complex and critical, quick fixes are few and far between.  <\/p>\n<p>VanderZwaag laments the fact that under this system, communications between care providers within the state institutions and those in the communities has broken down. The staffs of these facilities are overworked. And while in the past, if a psychiatrist in a state institution wanted to discuss a patient, upon arrival or prior to release, she knew to call the area program in the community from which that person had arrived. Now she may have no idea who to call.<\/p>\n<p>VanderZwaag believes that Jeff Kramer has suffered from that lack of continuity of care.<\/p>\n<p>When her son was diagnosed with schizophrenia, Valerie Kramer moved back to this area from Asheville, believing that here her son would receive the best care possible. She acknowledges that perhaps he is.<\/p>\n<p>In her journal, she has written: \u00e2\u20ac\u0153Everybody says, \u00e2\u20ac\u02dcThe ACT team has the services your son needs; they\u00e2\u20ac\u2122re the ones who can provide it, and they are providing it.\u00e2\u20ac\u2122 That\u00e2\u20ac\u2122s what I keep hearing. That if they aren\u00e2\u20ac\u2122t, and if it isn\u00e2\u20ac\u2122t working, it\u00e2\u20ac\u2122s because of Jeff\u00e2\u20ac\u009d \u00e2\u20ac\u201d that it\u00e2\u20ac\u2122s either because of his inability or unwillingness to acknowledge that he\u00e2\u20ac\u2122s ill, or his refusal to take his medication, or both. <\/p>\n<p>\u00e2\u20ac\u0153Now I\u00e2\u20ac\u2122m just trying to say, \u00e2\u20ac\u02dcI don\u00e2\u20ac\u2122t want to blame the ACT team.\u00e2\u20ac\u2122 I don\u00e2\u20ac\u2122t know\u00e2\u20ac\u00a6.\u00e2\u20ac\u009d<\/p>\n<p>Here\u00e2\u20ac\u2122s what scares her the most: \u00e2\u20ac\u0153I fear that my son is receiving the best mental health care our state has to offer. It\u00e2\u20ac\u2122s unfortunate and sad when the best is lacking in so many important ways.\u00e2\u20ac\u009d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>By Taylor Sisk Staff Writer XDS Inc. in Chapel Hill is a rare mental health care success story, an organization that has managed to navigate North Carolina\u00e2\u20ac\u2122s post-reform mental health care morass. But it barely hangs on. Challenged each day by sheaves of bewildering paperwork and limited funding, it\u00e2\u20ac\u2122s a \u00e2\u20ac\u0153day-to-day struggle,\u00e2\u20ac\u009d says XDS executive&#8230;<\/p>\n","protected":false},"author":12,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9,4],"tags":[],"class_list":["post-3667","post","type-post","status-publish","format-standard","hentry","category-features","category-news"],"_links":{"self":[{"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/posts\/3667","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/users\/12"}],"replies":[{"embeddable":true,"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/comments?post=3667"}],"version-history":[{"count":5,"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/posts\/3667\/revisions"}],"predecessor-version":[{"id":22409,"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/posts\/3667\/revisions\/22409"}],"wp:attachment":[{"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/media?parent=3667"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/categories?post=3667"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.ibiblio.org\/carrborocitizen\/main\/wp-json\/wp\/v2\/tags?post=3667"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}