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October 17, 2003 -- Covenant House New York Hosts New York State Office of Mental Health Policy Breakfast

On Friday, October 17th, Covenant House hosted a Public Policy Breakfast entitled "Closing the Gap: Young Adults in the Mental Health System," in an effort to create dialogue regarding the gap in services for mentally ill young adults. The Breakfast included a speech by our Executive Director, Bruce Henry, and a keynote address by New York State Office of Mental Health Acting Commissioner Sharon Carpinello. A panel discussion was held which included addresses by Louis Josephson, the Assistant Commissioner for Child and Adolescent Services of the New York City Department of Health & Mental Hygiene; Robert Giugliano, the Director of Covenant House New York’s Mental Health Program; Antonia Lasicki, Executive Director of the Association for Community Living; and Melissa Hollander, a Consumer in the mental health services arena. Among others also in attendance at the Breakfast were policy-makers and executive staff from providers located within the five boroughs of the City of New York.

Currently the mental health system does not have a systemic approach of providing age-appropriate housing opportunities and services for young adults with severe and persistent mental illness.

The following is a transcript of the remarks of the speakers on the panel.

Welcome
Bruce J. Henry, M.P.A., JD,
Executive Director of Covenant House New York

. . . As I was thinking today about how best to set what our goals are for why we did this advocacy breakfast, it struck me how many really important people have agreed to come today and be part of a discussion, a plan, an operation, to meet the needs of a group of kids and young adults that we think have not had their needs met. Besides the positive part of the energy and moving forward, there’s no denying that one of our goals comes out of frustration. As most of you know, our part of this great system is the crisis part, the part where for two months or three months the young people can get stabilized and have a plan and then move on, except what we’ve experienced in the seven years is there’s rarely a place to move onto. The adult system they are entering is truly an adult system. The people in it are 30, 40, and 50 and along comes this nineteen-year-old and we believe that without the positive parts of the system, they’re just not going to fit in. They have discrete needs. It’s not really good for them. It’s actually not very good for the programs, but how do we get their needs met? In the seven years, we’ve had 900 kids in our program. People who are seventeen, eighteen, and nineteen years old and are getting ready to enter a system that at the magic age of eighteen says that they are adults.

As some of you know, most of our funding is private, about 90 per cent of it actually is. As we present to donors about how they’re going to support this program we have, one of the analogies that we’ve used because our kids are needy, mostly poor, mostly underserved, mostly struggling, these are kids who have spent a long time being taken care of by systems, yet they go on their first day at the new placement and they discover their roommate is 45 years old. Which of us would bring our college kid to college, find out they have a 45 year old roommate and think this was at all adequate for what their needs were. So we’re bringing people together out of that sense of goodwill, a sense of quality programming, a sense that it can be done differently, but we need to make it be done differently. This is a matter of will, this is a matter of funding streams, this is a matter of, “Do we have enough resources?” But it truly is a matter of saying, without that, they’re not merely being underserviced by beds, they are being ill served in their needs. Twenty-five year olds, twenty-three year olds, twenty year olds have discrete needs that if they’re going to have any hope that when they’re 40, they’re able to function on a higher plane, they have to have those needs met there.

As we’ve worked with many of you, we know the most frustrating thing of all for an advocate has started to happen. Everybody agrees with us. It’s easier when people disagree with you; each of you can slug it out. Particularly if you’re a New Yorker, it’s a nice way to start your day, but the reality is that is the most frustrating position, because then you have to move off that dime and say, “How do we make it happen?” How do we make programs get built so that perhaps we play a crisis role, long-term urgency plays their role, the government plays its funding and governance role and each of the pieces fit together so that this group of young people get the service that they need. The action steps we’re hoping for from today are all in line with that goal. We’re very grateful that you’re here, we’re extremely grateful that Commissioner Carpinello is here and is willing to speak with all of us. At the end of the day we’d like to agree on two, three, or four concrete things we’re going to do to try to make this happen because in the end we’re extremely conscious that when you meet us at eighteen, a) in one system you’re already an adult, but b) in the real world everyone inhabits, who really thinks their eighteen year old is an adult? Nobody does. This is a group in transition between childhood, adolescence, and adulthood and we need to build transitional programs that make that happen for them. Hope you have a great day. Thanks a lot for coming. Anything we can do here at Covenant House, please feel free to ask, and we’ll be glad to do that for you.

Keynote Address
by Sharon Carpinello, R.N., BS, MSN, Ph.D.,
Acting Commissioner of the New York State Office of Mental Health (OMH)

. . . In the past several OMH has engaged in really extensive work to improve the quality of services we provide to about 100,000 children yearly and their families. You know many of these young adults. If you don’t know them, you know their faces and you know their characteristics. Certainly, the severity of emotional and behavioral symptoms is very, very high in these individuals. They live in poverty. They have much foster care experience involvement and some reside in shelters. Some are churning through our emergency room and our in-patient hospitals, both state and non-state hospitals. On the way down on the train, I was trying to catch up on some of my reading and I was reading an article that just came out in the October issue of Behavioral Healthcare Tomorrow. If you haven’t seen it, you should try to get your hands on it because there’s a piece in here that Bill Kanapaux wrote. He was an editor with Mental Health Weekly and is now doing some other kind of work. He wrote an article on “Responding to an Emergency for Children’s Services” and he highlights a paper presentation that was done by a psychiatrist in Massachusetts. I mention it because it is the face of the children and families that you all serve. The psychiatrist talks about a six-year-old who showed up for a psychiatric consultation and the boy had been diagnosed with attention deficit disorder at the beginning of the school year. This is only a few short months later and got prescribed medications. Four months later a pediatric neurologist referred the boy to this doctor. “By the time he walked into my office,” Dr. Steingard says, “in December, the kid had been on fourteen different psychoactive medications and walked in my office on five of them. I couldn’t figure out why the kid was tried on most of those medications.” The story goes on to tell about problems with the family and how the child really wasn’t connected, even with a mental health person, for four months while it was on this large number of medications. It also reminds me of the story, not a story but a case that David Woodlock, who oversees our state in-patient children’s facilities, told me several weeks ago about a very young male, nine years old, who he had just admitted to one of our kids’ facilities, who came in very emotionally disturbed, very withdrawn, and has a history of a mom who was using the Manhattan subway system, selling him because she’s a coke addict. Those are the kinds of children that you see every day and that we are absolutely trying to raise and elevate the quality of care and services that we administer. I don’t want you to think that because I’m in my white tower in Albany that I’m not interested in this. In fact I asked Bruce to invite me back so that we could spend some time together in many of the wonderful programs at Covenant House and I know you’ll do that.
You know there’s been storm brewing on the national level and we’re wrapped up in that storm. Many of you know that. It’s really a quality storm, raising this level of the quality of services that were delivered. It started with the release on the national level of Crossing the Quality Chasm, the Surgeon General’s report. I can’t tell you how very happy I am to have at the federal level President Bush’s Mental Health Commission report out because to have that kind of report at the federal level and hopefully with what’s going to follow it, whether it be funding or a change in certainly some of what we see happening. I’m very pleased about that.

We got caught up in what we called our quality campaign, “Winds of Change.” We’ve been enacting that for several years now. There are wonderful things happening. Not as much as I would like, and not as much as you would like, but we’re moving in the direction and making positive change. Several years ago we conducted an in-depth review of the available research and commissioned a comprehensive study of the service delivery system. That was done by Dr. John Lyons. Some of you have heard the results of that study. He’s director of policy and program research at Northwestern University in Chicago and we began this process by completing a study of nearly two thousand records of children receiving services in OMH-licensed programs. The study provided information about how services are used and what the functional level of the children and families using them. Overall, our analysis revealed that the structural-cultural components of traditional office-based clinic practices may not be effective strategies for keeping families engaged in treatment and may result in higher dropout rates and I’ll talk about that in just a minute. As a quality improvement initiative, OMH did begin to initiate several strategies to address this problem and we’re still continuing to do that and measuring the outcomes and performance around it. Functional family therapy was one of those and family-focused telephone engagement strategies. We learned a lot about engagement and are still learning a lot about engagement from Dr. Mary McKay who used to be at NYPI and is now at Mt. Sinai. She has a wonderful research base. Just simply picking up the telephone and calling families, speaking to them to remind them about an appointment has a tremendous positive impact in engaging and accessing services. We’re already seeing some significant improvements in this area and it’s our expectation that by keeping children and their families engaged in outpatient services for the treatment we will decrease the demand on crisis and residential services. I see that Dr. Josephson is on the program later and I’m glad because expect that you will probably speak a little bit about the Bronx study when you get up here. As you know, New York City recently released this study on Bronx mental health programs and clinics for children. These findings really mirror the findings of Dr. John Lyons. They weren’t inconsistent. They indicate, I think, that for all of us to really look at our practices that I just referred to, our routine practices in clinics. For example, how many of these programs really have evening hours and have hours during Saturdays and Sundays. I know at Covenant you’re working 24/7 days a week. So I ask that question about those results, Louis, and think about what it is we want to explore beyond some of the results that came up in the study. I also think that staff productivity levels and those kinds of things are the things we need to continue to look at.

We’ve been fortunate because when Governor Pataki provided the New York State Office of Mental Health with $42 million in new resources back in fiscal year 2001, we were really able to use both the Lyons study results and other research results, for example from Burns and Hoagwood and others to craft a plan of how those services would be sent. So you’re going to hear a theme from me, and that theme is let’s look to the research, let’s look to the data, as we begin to decide what services are adequate and effective and have the research base to support it. When the Lyons study revealed widespread use of off-label psychotropic medications, a lack of community service use prior to in-patient hospitalization and effective but underutilized home-based program for high-risk kids, we developed partnerships with key research entities in addition to John Lyons, like Columbia and its Center for the Advancement of Children’s Mental Health. We actually hired Kimberly Hoagwood, who was at IMH, is a fabulous researcher and knows services really well. She’s assisting us with others to both strengthen the services that we have and provide to develop services more closely aligned with the research practice. We are really pleased with the result to date. We’re completed the most comprehensive service expansion for children in the history of the Office of Mental Health. We added over 400 home- and community-based waiver slots, three home-based crisis intervention teams, six mobile mental health teams, 2500 case-manager slots, 29 family support programs, 45 transitional, coordinated positions, the clinical infrastructure to establish single point-of-access in every county and for children in Bronx, and the groundwork to establish 125 family-based treatment slots and eleven new community residence beds in the delivery system. I hate using slots and I hate using the word beds but I’m just trying to highlight that we have been expanding, certainly since ’01.

I am also proud to participate in what’s called the TRAAY project, I don’t know if any of you have heard about it or know about it. It’s a program that’s entitled “Treatment Recommendations for the use of Anti-psychotics for Aggressive Youth” or TRAAY. It was developed in response to concerns surrounding the use of atypical anti-psychotic medications for children. These meds are increasingly being used for aggressive assaultive behavior in both adults and children, but there’s limited scientific evidence supporting this clinical practice, specifically for children. Experts have created TRAAY to decrease the overuse of anti-psychotic medications with young people. This project is a unique collaboration between the state, Columbia University, and others. When I say “others” there’s a national consensus group that we have also been working with on this particular project. We have done focus groups around the TRAAY project with child practitioners including psychiatrists and other physicians and clinicians. We’ve been asking them to share their observations about assessing and treating aggressive and assaultive behavior in those children who have aggressive and assaultive behavior. As a result of the focus groups, the survey instrument was developed and administered to assess psychiatrists’ attitudes and practices with regard to assessing, treating and managing aggressive behavior, including the use of psychiatric medication. We’ve randomly selected discharged case records to review them to examine the actual use of these medications, particularly in the area of anti-psychotic medications.
A separate parent guide to in-patient treatment is being developed in partnership with parents as part of the psycho-social intervention offered to parents of hospitalized children and adults and we’re pretty proud of that. “The Choice through Voice” project was designed to increase communication between young people and the professionals that are serving them. It was developed by youth recipients for use in OMH child and adolescent in-patient and community settings. This booklet includes questions to youths concerning their attitudes and preferences about medications. It’s also important to include the youth’s perspective in medication decisions. Importantly, treatment teams need to consider the previous trials of medications, the side-effects, the purposes for medication usage, why it’s needed to help them function more effectively, and awareness that the child or adolescent is not overmedicated or undermedicated. Further, if medication does not assist in relieving symptoms, professionals need to be willing to consider all alternatives. The focus should be on the root and the issue of the problem that is causing the illness, and teaching the child or adolescent to manage the symptoms and issues and be in control. One of the things that Mike did—Mike by the way is just a fabulous leader in children and families—but one of the things that Dr. Mike Super (spelling?) was to bring a young adult recipient into his bureau. She has really helped us share the perspective of someone who has been through the system and some of the things I just mentioned about the development of information, education, and participation of youth in decisions that are made.

Our partnership with research centers is resulting in approved training and ongoing technical assistance in the use of evidence-based clinical practices to school-based mental health providers. The Governor’s initiative which I alluded to earlier made it possible to fund six programs here in New York City that are joint endeavors of the state Education Department, Department of Health and also Columbia’s Center for Children. These programs serve as comprehensive health and mental health partnerships in high-risk, high-need schools. Collaboratively we are examining the impact of evidence-based clinical practices on the ability of schools to engage in work productively with youth with complex mental health needs. I am proud to say that we have learned much from this collaboration so far. There are key challenges in delivering mental health services in the schools, including reimbursement and financing of these services. Emphasis on academic accountability, stresses on teachers, curriculum overload, and the need to develop family advocacy strategies for active and ongoing involvement. Parents are important contributors in mental health efforts that involve their children. They play critical roles in ensuring that change efforts in schools are consummate with the needs of the local community and need to be actively involved in all aspects of planning and programming. We know evidence-based intervention models exist. We talked about some of them this morning. It has been well documented. Mark Greenberg of Pennsylvania State University recently published a review of the literature in which he identified 34 empirically validated prevention programs for the schools. Michele Rones and Kimberly Hoagwood in 2000 did a review of over 1500 studies and identified 47 effective school-based mental health interventions. The bottom line is effective intervention models exist. The problem today still is that if you look at the national estimates, 94% of current mental health practice does not look to the science and research base. I really would challenge you folks at Covenant House to think about that. The next time we chat, bring some of the research and data in so we can talk about that.

Intervention alone, however, is not enough. Evidence-based practices include not only intervention services such as prevention models or treatments. They also include assessment practices. This is key, since making appropriate assessments is essential to matching children’s mental health needs with the highest quality evidence-based intervention services. This past month we launched a mental health assessment partnership with New York City and Columbia University. This endeavor will provide an important opportunity to assess the impact of a state of the art clinical assessment tool called the Diagnostic Interview Schedule for Children (DISC) in selected New York City school-based health and mental health clinics. Onondaga upstate is also going to be in the early stages of this process as well. It’s our hope that expanding the use of the DISC in school settings will assist in identifying children who are at risk of developing mental illness and enhance the quality of mental health assessments provided by school guidance counselors and mental health clinicians. We would like to see the implementation of the DISC in New York City and Onondaga County school-based clinics as just the beginning. Ultimately our vision is for improved assessments in mental health services linkages completed by school-based clinics and pediatric and family practices throughout the state.
I’m very interested in having New York grasp the problems around suicides and you will see in the release of our 507 plan shortly some statements around how we plan to work in the area of suicide prevention. A researcher at Columbia recently reported some staggering numbers in New York State. There were a hundred and fifty attempted suicides by teenagers last year. Of that number, 70 were successful. This is really intolerable; not one suicide should be tolerated. A disproportionate number of these teen suicides are either school dropouts or youngsters who have had difficulties in school. The kinds of kids I think that pass through Covenant House and that you try to treat. These are the kids that are homeless and on the streets and in need of crisis intervention. The majority of youth who died by suicide have not received treatment for their psychiatric disorder. Our goal is that improved assessment tools in school and primary care settings will identify children who are suffering from earlier, link these kids to treatment and significantly reduce these numbers. I can tell you right now I am not reluctant, I am not afraid to do needs assessment. We’ll be doing that. It’s the only way that we can do prevention and early intervention. I’m very committed to that. It seems that this is exactly also what the surgeon general’s national call to action on children’s mental health was about when it renewed its emphasis on prevention programs, early identification screening assessment and challenges to do that. Today, again, I’m committed to enabling our mental health system to do what we all must do to ensure that children and their families receive the quality of care they are entitled to live at home in school and stay out of trouble. I know that’s what you all want too. I know working together that we can be more successful than we’ve been in the past. Bruce, I hope that a year from now, not four years from now, when you invite me back again, that we together will be able to look at some positive change that you’ve identified this morning that’s very much needed. I thank all of you and I wish I could stay longer today. I’m anxious to hear how the day goes. Thank you.

Louis Josephson, Ph.D.,
Assistant Commissioner for Child and Adolescent Services
of the New York City Department of Health & Mental Hygiene

. . . I don’t know if it’s a question of resources so much, but I would say we’re definitely not getting the job done for young adults in the mental health system. We’re doing the best we can in many ways, but we need to do a lot better. I think the way you framed the question in terms of we’ve got agreement on what the issues are and what the needs are to a large extent. It really falls to us to figure out what to do next, in terms of government, community-based organizations, and planning. I will get to that. I want to say a couple of other things first. Sharon mentioned the Children’s Needs Assessment Project we did in the Bronx. It is on the Department of Health’s website [http://www.ci.nyc.ny.us/html/doh/pdf/pub/na-cmh0803-bx.pdf]. It’s a survey we did of outpatient mental health services in the Bronx for children and youth. Sharon is absolutely correct that we need to do better in terms of our flexibility with some of the program hours and how we do our work up there, but one thing it did show as well is that there seems to be a serious lack of capacity in the out-patient system for seriously emotionally disturbed youth and that’s who we’re seeing mostly in the Bronx. It’s seriously emotionally disturbed youth from poor families. We have to look at that, as she’s suggesting, that there is a direct relationship between capacity and quality of services in the community and how that flows into these young adults or becoming young adults and where they end up, in which system and what services they need as they move through their lives. So we really need to take a look at that and make sure we’re giving enough capacity at the community level to ensure that we can keep as many youth as possible with their families and out of residential services. I do applaud the state and appreciate the expansion of services that we’ve had since 2001. They’ve been quite significant and Sharon ran through them very quickly which I think really didn’t give them justice. We have the statistics at the city and at the state to show you the dramatic increase in terms of community residence beds, waiver slots, and intensive case management, so there’s been a tremendous increase and I’m convinced that all those community-based intensive services have done a lot to stabilize children and youth in their families and in the community. If we can do even more of that, I think we can use it because we’re showing even this single point of accountability or access we have in the Bronx for these services, that the demand is there, that there are waiting lists. One thing I think we do need to talk about is general capacity in the system. But as I said in the beginning, I’m not sure that it’s only about resources. One of the things I think we need to do here is at the city in cooperation with the state and providers is do some planning. Figure out what we’ve got in terms of resources, make sure we’re targeting those resources as best we can, and really come up with a comprehensive plan for young adults because everyone seems to agree that they have special needs and that they need to be treated in a different manner. I would not argue that. I would actually just mention that my division, the Division of Mental Hygiene, has just gone through a reorganization internally and now there’s a child and adolescent office that goes ages zero to eighteen and an adult office that goes eighteen and above and it now encompasses mental hygiene services. That’s mental health, substance abuse and MRDD. Having been part of the redesign team, it was very interesting. We had a very intense discussion within the department about creating a separate bubble there for 18-25 year olds. We weren’t able to do it for a number of reasons, but it shows that within our division, there’s a real appreciation for the needs of this group and that it needs special attention and planning. Even though we don’t have that formally set up within our division, we’re all very committed to make sure that age group gets their needs met. So what does it mean to get their needs met? One is, as Covenant House has demonstrated in their literature and their practice, vocational, educational, other support services, family involvement is also critical, and working with other systems. Working with juvenile justice, working with the criminal justice system, with foster care, is essential to make sure these kids get their needs met.

I would just add that because there is so much agreement, I don’t know that I have much else to add in terms of what we should do because I think people are in agreement in the scope of services that are needed, but we’ve got to commit to doing better planning on this. I will say that the city Office of Mental Health will sit at the table with whomever it takes—the state, local people, whatever—to come up with a comprehensive plan with targets that can be met to produce services that are going to be of quality and meet the needs of this population. I think it’s not that people haven’t tried, but I think the results have been very scattershot. We have some programs here and there we’ve developed with small pots of money and it’s not really meeting the need and I would submit that maybe what we need to do is since these 18 to 25 year olds roughly are served already in the adult mental health system that we take some of the money from that system that is already serving them and move it into or coordinate it better with the child and adolescent services divisions—however we want to think about that--to make sure that they take into account all the needs of this age group, because it will take some more money shifting or cost shifting. Perhaps if it’s in the right place it will be focused on more and attended to more. Thank you very much. I’m looking forward to your comments and it’s a pleasure to be here.

Bob Giugliano, Ph.D.
Director of the Mental Health Program at Covenant House New York

. . . Here at Covenant House, we have a mental health day program and if there is anything I would like for you to take away today, it’s seven and nine hundred. The program has been open for seven years and we have served nine hundred New York, NY-eligible homeless, mentally ill 18- to 21-year-olds. Seven years, nine hundred young adults. In the course of that seven years, we have been able to place a very small percentage of those kids, about seventeen percent, into the adult residential system. As Bruce mentioned earlier, the adult residential system is neither adequate nor appropriate to meet the needs of young adults. Now I could go on and talk about our day program and what we do in a crisis shelter where we see close to four thousand young people a year. In that crisis center shelter, we have on any given day 25-35 eighteen- to twenty-one-year-olds who we serve through our mental health program. In the course of a year, we see over a hundred young people in that program. Many of them do not stay. We are very committed to holding onto as many of these young adults in the program as we possibly can, and to find them housing as quickly as we can because living in a shelter is not in their best interests in the long run. So there is no question but that there is an absence of appropriate and adequate housing and services for young adults. This is not a Manhattan problem. This is a citywide problem. All of our kids come from all of the boroughs in the city. It is also a statewide problem. It is also a national problem. None of the states across the country have young adult programs and the divisions of health and mental health are not broken down to represent the young adult mentally ill.

Now I just want to also throw out to you some figures—and you don’t have to remember these figures—you just need to remember that at Covenant House we dealt with nine hundred 18- to 21-year-olds in the course of seven years. But these other figures are also very interesting. Reviewing the patient characteristic survey from 1999 and we asked the Office of Mental Health to break it down by age category, what we find is the following: there were 12,205 young adults receiving mental health services in licensed OMH programs during that survey week in 1999. There were 1,230 young adults scattered throughout the adult residential system. There were 514 homeless throughout the state. In the city, there were 400 young adults scattered throughout the various programs that provide housing in the city and there were 300 homeless who were served on that particular day as well. The point is that in the state of New York, the Office of Mental Health hopes to have 28,000 beds in the system by 2005 or 2006. None of those beds are earmarked for young adults aged 18-25. None.

So the question is, we know that working with young adults is extremely challenging and it’s costly, it is also incredibly rewarding because not only do we help young people over the crisis of active symptoms, but we are also involved in promoting their growth and development and helping them to reach their full potential. We all know that there are gaps in housing and services for the young adult. We also know that this is a problem of long-standing nature. This is nothing new. Bert Pepper in the 70’s worked at Rockland State and wrote an incredibly useful paper back then, “The young adult chronic patient: an overview.” Some of you may remember that paper. It’s very insightful clinically as well as in terms of the system and in terms of what young adults need. Back then in the 70’s young adults need community residential settings and programming that responds to their particular developmental needs. This is now 30 some-odd years later, and do we have anything resembling that for these young people? The answer to that is no. The mental health community, and we’re all part of that, we know what young adults need. We’ve known for years what young adults need. When we know what a young person needs in order to grow and we don’t respond to that knowledge, and that knowledge does not inform our policy and practice, is there any other term to use but neglect to describe that? We have to ask how a system committed to the mental health of its citizens can by policy and practice neglect its young adults. In spite of all the good that we do, in spite of all of the efforts and energies and financial and fiscal and physical resources that we apply to help young people and to help the mentally ill, we nevertheless have to ask how it is that this neglect continues. How does it continue?

We could discuss this philosophical issue or systems issue, but I would just like to offer a couple of thoughts about it. The power of the eighteenth birthday is a remarkable power in our society. On the one hand, it makes young people incredibly responsible. You’re eighteen, you can get drafted, and you can carry a gun. You can go to Afghanistan and you can go to Iraq and you can give your life for your country. That’s the power of the eighteenth birthday. You can drive a car. You can have more independence. However, for the system what the eighteenth birthday does, however, is to blind it. The system is blinded by the eighteenth birthday because the system does not see an eighteen- or a nineteen- or a twenty-year-old. The system sees an adult, and since we have an adult residential system and an adult mental health system, in some respects, the eighteenth birthday lets us off the hook. It has let us off the hook for years and years. So, in spite of all the good that we do, in spite of all the efforts and energies and real serious commitment, everyone in this room is someone who has devoted their lives, their adult lives to working with the mentally ill and to promoting the growth and development of folks. In spite of all of the good that we do do, we nevertheless are part of a system that’s blind in its organization and structure to the presence of young adults. The organization and structure of the system does not reflect in any meaningful way the existence of these young people. The other point that I would like to make is that I think one of the contributing factors to the current lack of housing and services and systemic response to young adults is the fact that perhaps in the field of psychiatry we have a very narrow view of what treatment is. We have a very narrow view of the outcomes we’re looking for. On the one hand, it is incredibly important to relieve people of symptoms of distress and symptoms of mental illness, but if the only criteria for your success is how many days you keep someone out of the hospital, or the obverse, how many days you keep people in the community, then we have a very,very narrow view of what it means to treat mentally individuals. In think in addition to symptom relief and days out of the hospital and days in the community, we also need to begin to think about how many of our young people have gotten their GED’s, how many of our young people have graduated from high school, how many of our young people have taken courses in college, how many courses have they taken, how many vocational training programs have young mentally ill adults been in and graduated from? So we need to have a broader understanding of and a different set of standards for success with our young people. So I want to end on that note and to again remind you that in seven years, Covenant House has worked with nine hundred mentally-ill 18- to 21-year olds, homeless, young adults and for all intents and purposes, we’ve had no place to send them. Thank you very much.

Antonia Lasicki, JD
Executive Director of the Association for Community Living,

. . . Bob and I have been at a couple of meetings together over the last couple of years where he has articulated this issue very well as has Mr. Henry today. We certainly understand it acutely. I represent a 120 plus not-for-profit agencies that do housing for people with severe and persistent mental illness in New York State. So we have about 45 agencies in New York City and the rest scattered around New York all the way from Buffalo to Plattsburgh. What’s striking to me is that everybody talks in the same terms, and what I’d like to do today is give somewhat of an explanation for the problem that Mr. Henry and that Bob have just laid out. Because the problem is that they’re absolutely 100% correct and I probably disagree somewhat with the resources issue because I believe it is a resource issue. Some resources can be moved around but certainly we need tremendous more resources to serve the needs of all the people in the state who are severely and persistently mentally ill and in particular, people who are homeless and are poor. It’s one thing to increase treatment modalities and to reorganize your outpatient systems so that young people can remain in their homes, but that assumes that they have a home. So when you talk about the people that Bob is talking about—the nine hundred people that he can’t find placement for—those people are less than eighteen years old and they’re already homeless. So when they reach that magic number of eighteen they need a home. They need to continue to have a home. They’re already in the residential system. They need to continue in the residential system in some way until they’re able to get to the point where they can sustain themselves in the community.

But, as I said, I want to talk a little bit about why the problem exists and I see many familiar faces in the audience. I know some you know this quite intimately, so forgive me for repeating things that you already know. What’s interesting to me is that the Office of Mental Health in 1993 estimated the need in the adult population for housing for people with severe and persistent mental illness to be at 20,000 beds. Now I brought copies, probably enough copies for almost all of you, of that 1993 report where they laid out the methodology for how they came to that number. It’s about 20,000. I think what’s interesting in that report is that they didn’t talk about those who are sixteen to eighteen in the next few years who would age out who need to go into the system. I don’t really see them in that count, so obviously that count was low even in 1993. That count also includes 11,000 people who are in adult homes. In today’s world, we know that the 11,000 to 15,000 people with mental illness are in adult homes, for the most part shouldn’t be there. At least some large majority of them shouldn’t be there. That increases the need. We have 8,000 people in prisons who need placement in the community. We have now—at the time of that study there were 9,000 people with mental illness who were homeless—we think now about 11,000 who are homeless in New York City. There was a need of 20,000 back then. At that time, there were 16,000 beds in the adult system and there were 5,000 beds in the pipeline. That would have brought the system up to 21,000. Governor Pataki put another 2,000 in, that’s what Dr. Carpinello was talking about, the $42 million, there were 2,000 beds included in that. That brings you up to about 23,000. That’s about where we are now. When Dr. Carpinello talks about 28,000 beds by 2005 that includes the children’s beds as well, the under eighteen system. So in the adult system you’ve got about 23,000 or so beds, but we still have a huge unmet need. We still have 11,000 to 15,000 in adult homes. We still have 8,000 in prisons. We still have 11,000 homeless. What we don’t have is a huge state hospital institution population any longer.

This gets me to the historical context of the housing programs. Twenty to thirty years ago, when the programs were first developed, there were tens of thousands of people in the state institutions. It was that population really that the housing programs were developed for. So they started to take people out of the hospitals and put them into group homes, transitional programs that were licensed by the Office of Mental Health. Everybody came out of those programs with two medications, Thorazine and Cogentin or Haldol and Cogentin. They, for the most part, exhibited negative signs of schizophrenia. They were terrified of the community. They preferred to stay inside. Our job at the time was to get people integrated into the community, get them stabilized on medications, and teach them how to use the bus, teach them how to cook, teach them how to do their laundry. The programs were set up and staffed in such a way that they would take care of that population of people who showed very institutionalized behaviors. People with severe medical conditions stayed in the hospital. People with severe behavioral problems stayed in the hospital. People with forensic histories stayed in the hospital. We didn’t take them and the model was not really developed for that. We have single staffing on most shifts in a community residence, for instance. The reimbursement rates from the Office of Mental Health are still less than $16,000 a year for a direct care worker upstate and less than $18,000 downstate.

Medications at the same time got very good. More and more people came out of the hospitals to the point where we’re now down to 4,300. Forty-three hundred people in the hospitals now. That means that the pressures on the transitional community residence [CR] program are acute to take people with the highest needs in the community. That means people with severe medical conditions in some cases, substance abuse problems, forensic histories, AOT, and court-ordered where the judges usually want 24 hour, seven day a week supervised setting. So the highest-need, highest-risk clients go into the CR’s. The staffing pattern is exactly the same as it was twenty years ago. The reimbursement rates are exactly what they were in 1995 and the number of those beds is exactly the same as they were in 1997 or so. There have been no CR beds developed in seven years. So the community residence program is itself in crisis and they’re having a very hard time adapting so that they can serve the needs of the people that they’re getting now. Then you add the 18 to 25 year olds that create a whole other level of need and it’s a whole other level of expertise that the staff really has to develop. That’s one of the reasons why you’re having trouble placing people. I frankly think, and ACL has been advocating for a number of years now, that the entire mental housing system be looked at.

To take it just a step further, in 1991, as medications and technology got better and the rehabilitation movement got better, we developed more of a recovery and rehabilitation culture. Another program called “supportive housing” was developed. That’s unlicensed, permanent housing and we found that more and more adults, in particular the people who were first placed in CR’s all those years ago could make it on their own in permanent housing. Since 1990-1991, permanent housing has become the housing model of choice. We want to develop more permanent housing and let the support staff meet the client in a client’s own home. As that phenomenon has happened, and over ten years the only beds that have been developed really are supportive housing beds, and that’s a good thing. But while all that’s happening, ACL is advocating that we have very specialized populations now. We have a young adult population 18-25. We have a geriatric population that can no longer be in transitional settings. Geriatric clients have been in CR’s. If you’re 80 years old and on fourteen meds or twenty meds, you’re not going anywhere. You are not going to go to your own apartment. My mother couldn’t handle my father’s medications in the year before he died. It’s not reasonable to ask somebody who is 85 years old with fifteen medications to move on to a supportive housing apartment. So what we’re saying is, and this is where I agree with Louis a bit, we should look at the resources that we have and move them around. Some of those CR’s should be made permanent for geriatric clients; some of those CR’s should be tooled up specifically to serve 18-25 year olds, or to specifically serve clients who have substance abuse issues. Maybe they can’t be completely dried, maybe we want a harm-reduction model. Maybe we want them to be able to be a wethouse and that would be transitional. There are some populations that probably could use a transitional setting for a time. The 18-25 year group is probably that group, at this point some of them, anyway. Others really should be moving into a more permanent setting, some supervised 24/7, some not.
Even if we take the existing housing beds that we have now, and we do what I’m saying, and we move it all around, the fact remains that the licensed programs are still reimbursed at unbelievably low levels, and have unbelievably low staffing. People work alone. The supportive housing program, which is a rent-stipend program, when it was first developed in 1990, the idea was that one staff person would handle about fifteen clients. Rents have increased over time, and there’s been only one significant increase in supportive housing stipends in twelve years. Providers can’t pay the rent and pay the staff. There’s just not enough money there. There just isn’t. Although the models can be changed to work better for specific populations, all of those models just need more money. They just do. If we’re going to be able to staff CR’s or change CR’s to young adult CR’s, we have to have staff who are able to work with young adults. I don’t think a 20-year-old with a GED working alone is adequate staffing to work with 18-25 year olds, or 45 year olds or 80 year olds. That’s what we have at this point.

We’re pushing for a comprehensive needs assessment, like what was done in 1993 and hasn’t been done since. That’s number one. We need a real needs assessment. Second, we need a real commitment on the part of the state to work with providers and local and federal government, because there’s lots of different funding streams that we could pull together, but there is no plan, as Louis was saying. There is no plan. We do need a plan, but we also do need significant additional resources. One place that we could find some significant additional resources is in the state institution system. These are rough numbers. About thirty years ago we had 25 adult state psychiatric institutions in the state. They are huge campuses with huge buildings with food service workers, electricians, maintenance workers, lawn workers, and all of these staff people on huge campuses. We had 25 of them that served 93,000 people. Now we have seventeen adult state institutions and they serve 4,500 people. So if you can get your mind around those numbers, we still have seventeen campuses that serve 4,500 people. We used to have 25 that served 93,000. That is my number for the day. Bob had his two numbers. That’s the number that you should really think about. All of that money that’s being spent on all of those institutions is money that could be spent on the community side. All those people were brought into the community, put into adult homes, different kinds of homes, and homeless on the streets. We still have campuses with 75, 100, or 150 patients. I know that closing hospitals is a political hot potato. Every community seems to think that they must have a state institution in their back yard. There are state legislators who support that because frankly there are a lot of jobs at stake. In rural communities in upstate New York, it’s a pretty good jobs program, just like the prisons. There’s a lot of resistance to closing those hospitals, but that’s where an awful lot of the money is. If we can get the money out of those state institutions and move it into the community, it would be helpful. The OMH budget is about $4.8 billion, of which half goes to the state institution system. That’s an awful lot of money.

Our ACL providers have tried to be very creative in working with some young adults. What we have across the state is that specific providers have made a decision to work with young adults. What they’ll do is that they’ll take a number of supportive housing beds. So if there’s this permanent-housing model, they’ll take the stipends from some number of beds. They might buy a single-site building. It might have six apartments or in the city, more, and designate it for young adults. They do that with certain agreements with the local governments. They’ve tried to learn how to work with young adults. I know that there are programs around the state that have been very successful at working with young adults but it’s not planned. It’s a provider by provider kind of commitment. I believe that there are some providers here today who have made that commitment to try to work with young adults or adapting some of their beds to young adults or are interested in doing that in the near future. Some of you might want to talk to them. It is a huge problem. I’ve talked about the adult system just by way of explanation for why it is the way it is and how it’s come to be what it is. It’s not an excuse, just an explanation. So, just remember, 93,000 beds in 25 hospitals and 4,500 beds in 17 hospitals. Thank you.

Melissa Hollander
Consumer of the Mental Health Service at Covenant House New York
tells about her experiences with depression

. . . Good morning. My name is Melissa Holland and I’m twenty-one years old. I was born in Chicago, Illinois on September 6, 1982. I had a pretty normal childhood. I say “normal” because divorce is common in today’s families. My nuclear family divided when I was four years old. My brother Michael and I lived with my mom, and spent alternate weekends and vacations with my father. The living environment at my mom’s was not that stable because she had quite a few abusive boyfriends. At age ten my dad got emergency custody of my brother and I, which was for the best. My father was remarried, had a decent paying job and lived in a nice neighborhood. There were no drunken men to take the focus off of us children. My brother and I went to good schools, including religious school. For once in our lives it was all about him and me. We did see our mother every other weekend or so, but at the time I was content living with my dad. Materially I was fine. I had all the things that I wanted: food, shelter, clothes, etc. Psychologically, it was a different story. I’d been in therapy since I was five years old as I was trying to deal with my parents’ divorce. When I was six years old my mother had taken me out of therapy because she couldn’t afford to pay for it. However, when I went to live with my Dad he had me start therapy again. It was helpful, but I always had an empty feeling inside me like something wasn’t quite right. At the time I had no idea what was bothering me, but ten years later I would figure it out.

When I was seventeen years old, I entered Highland Park Hospital for trying to commit suicide. After spending two weeks there, I was diagnosed as depressed. I was given Prozac to remedy the situation and life went on. During the next three years I went through a variety of medications such as Remeron and Affexor, therapy, and three more hospitalizations. But there was a problem: none of the medications seemed to be working and I went from feeling happy to sad for no apparent reason. This seemed to be happening constantly. I didn’t understand it. Couldn’t they find a medication that would help me? I had my last hospitalization in November 2001 and I was put on another medication. It seemed to be working although I was still having the feelings of bouncing back and forth between happiness and sadness. Even though the medications were working, my personal life was not that simple. I’d gone back to live with my mom and then I’d gone back to live at my dad’s house. I had attempted college twice, and I dropped out. More disturbingly, I exhibited promiscuous behavior and I’d even tried running away from home a few times. I had my first official mania in January 2003. I was taking a plane to New York, to Los Angeles, and back to New York so that I could get into acting. I went through all of my life savings and maxed out my credit card just to spend it on hotels and restaurants. My cell phone bill for that month of January was $3,000. After coming down from the mania and going back home to Illinois, my mom took me to another psychologist who re-diagnosed me as bipolar, also known as manic depression. I started taking new medications and to this day I’m still taking the same ones. I don’t know why I hadn’t been diagnosed sooner, but the signs were all there. The highs, lows, dangerous behaviors, all of these are signs of manic depression. At times, I’m bitter about my illness, but I realize that it is a gift. I can help other people and they can educate me more about my illness. Since coming to Covenant House my life has improved. I left home so that I could lead an independent life and the Mental Health Day Program has helped me in so many ways. I’ve worked hard to receive my public assistance and I have applied for disability benefits. My case manager is helping me with housing which I’m excited about. I should be moving into it very soon. I wish to re-enter college and I hope to ultimately enter a profession that will help other people. I sincerely thank you for granting me the opportunity to speak with you about my experiences and I hope that you have found my story to be informative. Thank you.

Questions and Answers

Question: We’re concerned about the whole diagnosis piece. What we’re seeing is that runaway and homeless youth who are living on the street and having to survive in this environment, are being diagnosed, and being giving these diagnoses and getting medicated based upon the experiences that they’re having due to their environmental situation. So it might not necessarily be a chemical imbalance, it may be environmental. So I’m sort of wondering if you could sort of talk briefly on that.

Bob Giugliano: What we have found in our mental health day program is that young people who have been on the street and who have been homeless certainly do evidence what we could call homeless youth syndrome, characterized by depression, hopelessness, lack of motivation, and lack of interest in moving on. When they come into the shelter, there is some relief from the stress of living on the streets. There are some folks who are able to, with the support of the shelter and the resources that we have been able to engage in making decisions that would help them move on in their life. Those young people do not necessarily evidence Access 1 diagnoses. They are coming in as a result and evidencing what we would call a stress disorder. So there is a difference between the more typical evidences of major mental disorder and the kind of street syndrome that we see.

Antonia Lasicki: I just wanted to add that OMH licensed and funded housing usually requires an Access 1 Diagnosis. If someone who’s eighteen needs housing of that type and doesn’t have an Access 1 Diagnosis, it becomes very difficult for them to access that housing. I don’t know if this is true or not, Bob you can answer this, but of the 900, how many have Access 1 diagnoses and how many don’t. This can be a huge issue. There is another way if there are significant functional impairments that are documented, you can sometimes get somebody placed. The single point of access system that OMH is putting into place throughout the state is really screening out all but the highest risk and the highest need. SPOA (Single Point Of Access) is coming last to New York City. It has been implemented in the rest of state and the local governments are deciding for the most part, with providers, who’s going to get the bed. The local government has a lot of power under SPOA, so that local government will start deciding who’s my most problematic population or who’s my most problematic individual and it’s that individual who’s going to get the bed.

Bob Giugliano: I just want to add that the nine hundred that I’ve referred to are nine hundred 18- to 21-year-olds with Access 1 Diagnoses and who are NY, NY eligible because of the nature of the psychiatric illness that they present to the psychiatrist. Our psychiatrist is excellent at making distinctions between those young people who are eligible and those young people who present with mental health issues who may need some counseling or some temporary medication for relief. Not everyone who is referred to our program is accepted into the program. If our psychiatrist sees 300 young people a year, perhaps 200 may be accepted in and found eligible for the program.

Louis Josephson: I’ll just add that we’re not about labeling kids with diagnosis. It’s only good if it helps in some way and gets them some effective treatment and it’s an accurate diagnosis as well, is incredibly important. If you have a provider linking with somebody who’s consistently misdiagnosing or overdiagnosing youth, let the city Department of Mental Health know and we’ll work with you and that provider, because we’re not in the business of mislabeling kids, though sometimes it becomes an access to services issue but that’s not what I was thinking I heard in your question. It seemed more of a philosophy or a point of view about these children, right?

Question: Is there a way to attack this problem from the start before things get out of hand?

Louis Josephson: These are challenging questions and many things are impacting on us. Just as Melissa said, some people have a mental illness that needs to be attended to and that can be made worse by environmental stress and family situations. That’s certainly something we can’t do anything about. What the issues we face nationally, not just in New York City, are issues around managed health care, getting effective services to people, the evidence-based practice for children and youth services is not where it could be—we lag behind the adult system. There’s also a tremendous issue, and I don’t need to tell people in this audience, of stigma. People are reluctant. Melissa’s case is actually somewhat unusual that her parents got her into some treatment services early on, but that’s not the norm. We often find that families are reluctant to do that because they don’t want to see that there’s this type of problem in their family and things get worse before they actually get into some services. It’s a really complicated question. Our commitment here at the city’s Department of Mental Health is that once the issue like mental illness or a mental stress disorder has been identified, we need to do the best we can at the lowest level of care, at the least intensive level in the communities, to try to do the best we can for those kids and families to keep them from progressing up to higher levels of care. That’s something we need to look at and making sure we’re being as effective as possible.