PUBLIC HEARING TO EXAMINE SUPPORTS AND SERVICES FOR INDIVIDUALS AND FAMILIES DEALING WITH MENTAL ILLNESS IN NEW YORK STATE

NAMI Familya 10 11 ---oOo--- 12 13 14 15 16 17 18 19 20 21 22 23 24 25 1 SENATOR CARLUCCI: Good morning. 2 I want to welcome everyone to our hearing on 3 mental-health support and services in 4 New York State. 5 And, I'm Senator David Carlucci. I chair the 6 Committee on Mental Health and Developmental 7 Disabilities. 8 And, I want to thank everyone for coming 9 here. 10 The idea here today is, we'll hear a broad 11 range of issues, all dealing with mental-health 12 supports and services in New York State. 13 The idea is to get it on the record so that 14 we have a blueprint, that we have an agenda, going 15 into the next legislative session, that we can 16 really address the issues at hand. 17 We know there's some really changing times 18 when it deals with the mental-health community. 19 And what's important is, I want to make sure 20 everybody's voice is heard. That we hear about the 21 experiences that you're having, the situations that 22 you're going through, so that we can work together 23 to address them. 24 This past legislative session we had many 25 successes. 1 We're still waiting for the Governor to sign 2 some legislation. 3 And, we're hopeful that that will pass, and 4 really continue the work that all of you have done, 5 to make sure we provide the best level of support 6 for people living with mental illness here in 7 New York State. 8 So with that, we'll get right to the 9 speakers. 10 Our first speaker is Glenn Liebman, who is 11 the CEO of the Mental Health Association of 12 New York State. 13 Glenn. 14 GLENN LIEBMAN: Good morning, Senator. 15 I want to thank you, first, for holding this 16 hearing, and recognizing the needs of community 17 mental health. 18 In your time as Chair, you've been a real 19 champion for our community, and it's greatly 20 appreciated. 21 My name is Glenn Liebman. I'm CEO of the 22 Mental Health Association in New York State. 23 Our organization is comprised of 24 30 affiliates in 52 counties throughout the state. 25 Our members provide community-based 1 mental-health services, but we also are very 2 involved with education and community advocacy. 3 Many of our members, including our affiliate 4 right here in Rockland County, advocate passionately 5 for community services, children's mental-health 6 services...the whole gamut of services that you have 7 strongly supported us on. 8 Today on the mental-health system, though, we 9 sit on the precipice of change. 10 The system of care is undergoing changes that 11 are unprecedented since the days of 12 deinstitutionalization. 13 And, I think it's so important that we do 14 not -- there were some positives that came out of 15 deinstitutionalization, but there were a lot of 16 failures. And a lot of the failures, frankly, were 17 because the community service system was not 18 well-funded. We were deinstitutionalizing thousands 19 of people and not giving them appropriate 20 community-support services. 21 And, we want to make sure that, in these 22 changes, that there remain safeguards in place, and 23 essential services as well. 24 So whether you're talking about health homes, 25 Medicaid managed care, DSRIP, FIDA, HARPs, you name 1 the acronym, we've gone through about 20 acronyms in 2 the last two years, all new ones, all bring with 3 them significant challenges, but, also, we believe, 4 significant opportunities. 5 Our members are very engaged with the changes 6 in care. Many of the people we serve will be in the 7 Health and Recovery Plan services (the HARPs). They 8 will have enhanced 1959 waiver services. 9 What this means really, in layperson's term, 10 and I know you know this, is that so much of the 11 work that the MHAs have done for years in 12 community engagement, peer services, family support, 13 support education...the whole gamut...employment, 14 prison/jail diversion, et cetera, will now become 15 Medicaid-able, which will provide an enhanced 16 funding source. 17 This creates great opportunity to expand the 18 base of the services that we know help in recovery. 19 The combination of sound clinical care, with 20 access to best practices, appropriate access to 21 medication, and the myriad of recovery services, are 22 integral to the continuum of care. 23 There are no cookie-cutter ways to recovery. 24 Individuals need options. 25 The more active use of waiver services, the 1 great hope is that individual options will continue 2 to expand. 3 It will, of course, means that health plans 4 will also be active partners in Medicaid managed 5 care, and we have to educate them about the services 6 that we provide, while they will be educating us 7 about their areas of expertise. 8 We also will have to be educated about 9 Medicaid billing and other ancillary services. 10 We will be working with the State to help in 11 the development of the training and funding for the 12 billing of Medicaid. 13 This is like one of those issues that people 14 aren't talking about as much, but it's really 15 significant, because a lot of our MHAs are small 16 operations. 17 Yes, we have a very large, effective MHA here 18 in Rockland, but, a lot of our MHAs throughout 19 New York State, we're talking about four- or 20 five-people operations. And for them to start 21 billing Medicaid? They don't know, it's like 22 learning Latin. It's all something that's so new to 23 them. 24 And we have to make sure to be vigilant with 25 the State, to ensure there's preparedness money to 1 help with the -- you know, with Medicaid billing. 2 There are many things in the existing system 3 that are, and always have been, recovery-oriented, 4 and play a significant role in keeping people in the 5 community and out of the hospital. 6 We want to make sure that these programs 7 remain in place as a safety net for individuals with 8 psychiatric disabilities. 9 Community systems have always been integral 10 to recovery. A system of care must remain in place 11 through local assistance funding. 12 And you've been a real champion on this. 13 The movement to Medicaid managed care should 14 not be used as a rationale for cutting local 15 assistance funding. 16 These waiver services for many community 17 services could very well be a good thing that will 18 significantly improve outcomes, but it will not 19 happen overnight. We have to ensure that local 20 assistance funding continues to exist in the future. 21 We also have to be concerned about those 22 individuals who will drop out during these changes. 23 The sad reality is, that no matter how 24 thoughtful the design and implementation, there will 25 be people who will be confused by the changes and 1 will be lost to the public system of care. 2 We must find a way to help these individuals 3 not fall through the cracks, and to help bridge 4 their interactions between themselves and their new 5 partners in the health plans. 6 This should include the creation of a hotline 7 Ombuds-function program that will work with the 8 health plans, the State, and the individuals to help 9 amicably resolve outstanding issues. 10 Through our members across New York State, 11 many of which run hot- and warm-lines, including the 12 MHA of New York City, which runs the national 13 suicide-prevention line, we would have capacity in 14 New York State to run such a project. 15 The bottom line, though, is there is no 16 system of care is better than the people who are 17 running the programs. 18 We must have a fully engaged and financially 19 supported workforce. 20 I want to really personally thank you, 21 Senator. You fought as hard for the COLA as anyone 22 ever has for the direct-care workforce. 23 We -- you know, having worked in Albany for 24 many years, you hear a lot of stories. 25 And we heard how you went to the mat for us 1 in terms of COLAs for our direct-care staff. 2 So, we are so appreciative. 3 You are a real champion, and we cannot thank 4 you enough for all you did in that regard. 5 We will have to continue that fight for 6 better incentives for the workforce through 7 additional financial incentives, enhancements for 8 the mental-health workforce, tuition reimbursements, 9 career ladders, and other programs. 10 When we talk about the program, we also 11 recognize the importance of hospital and bed 12 closures done in a thoughtful, planful manner. 13 MHANYS was on the frontline in support of 14 both the Governor's Center of Excellence plan and 15 the work of the Legislature. 16 We are pleased to see these pre-investment 17 services are beginning to be funded around the 18 state. 19 The Office of Mental Health should be 20 commended for their work in getting the funding out 21 to the community. 22 Programs, the community stakeholders have 23 said our priority, like housing, mobile, and 24 crisis -- other crisis services, peer support, 25 ACT teams, et cetera, are being funded. 1 I know that in the lower Hudson River region, 2 there was an announced distribution of $2.25 million 3 for these services. Adding other ancillary 4 services, it came to $3.2 million. 5 And we are appreciative of the Governor, and 6 we are appreciative of you, Senator, and the other 7 legislators, for this important pre-investment 8 funding that will go a long way to helping provide 9 essential services. 10 We hope to continue the State's commitment in 11 the future, recognizing the over 40 million 12 annualized, statewide, for these services, with a 13 continued emphasis on those priority areas, 14 especially around housing. 15 We know New York does more than any other 16 state in community housing, but even more has to be 17 done, because so much of the basis of recovery is 18 housing safe and secure -- is housing and secure -- 19 is safe and secure housing. 20 So, to encapsulate that point, a 21 recommendation: 22 I just want to help to ensure and support the 23 successful transition to Medicaid managed care; 24 Continue to ensure that funding is in place 25 for our community-based services for local 1 assistance; 2 And, Medicaid managed care cannot be a 3 vehicle for cutting this funding. 4 Thirdly, a strong role should be in place to 5 ensure that those are individuals who have concerns 6 about the changes to managed care have a responsive 7 system in place through an Ombuds program. 8 And the final -- well, two more 9 recommendations: 10 Continue to find funding opportunities and 11 other incentives for the underpaid mental-health 12 workforce; 13 And, ensure that new reinvestment funding is 14 fully funded. 15 And I know that you will be vigilant in that 16 end, and you have done a great job in that end, 17 around community priority areas: around housing, and 18 mobile crisis. 19 The second, just briefly, I just want to talk 20 about the second area, which I've talked to you 21 about before, and you have been a great supporter, 22 and that's mental-health literacy. And we just 23 don't talk enough about that. 24 There's a whole other chapter when it comes 25 to addressing concerns about people with psychiatric 1 disabilities, and that includes ending the stigma of 2 mental illness and educating the public about mental 3 health. 4 Again, thank you for your support in 5 embracing one of our key training programs: 6 mental-health first-aid. 7 Through your leadership -- and I mean, your 8 leadership; you were the one who was really 9 responsible for this -- we were able to provide 10 training to our members statewide on youth 11 mental-health first-aid, including our members in 12 Rockland County. 13 Thanks to your leadership, Rockland, and 14 other corners of the state, have will trainers 15 available through the local MHAs to educate teachers 16 and other school personnel on how to respond to a 17 student's behavioral-health crisis. 18 This training also serves as a great tool to 19 help combat the stigma and discrimination of 20 mental-health illness. 21 That's great, and you've been incredibly 22 supportive. 23 Through your support and advocacy, and that 24 of Assemblywoman Aileen Gunther, as well as our 25 Education Chairs, Assemblywoman Nolan and 1 Senator Flanagan, we've made headway in the battle 2 to bring mental-health education into the schools. 3 The mental-health education bill made it 4 further this year than it ever has in the past. It 5 passed the State Senate, and the movement -- and it 6 moved to Ways and Means in the Assembly, which is 7 the furthest it's ever gotten. 8 If we are ever going to end the stigma of 9 mental illness, we have to start at a young age. 10 Educating our youth about suicide prevention, 11 depression, anxiety, and other mental-health issues 12 will not spread the illness. 13 This is not like when -- it's just like when 14 we whispered about cancer in the '60s and '70s. 15 Like, if we said it, loudly, somehow people would 16 contract the illness. 17 We should be openly talking in schools about 18 mental-health-related issues. 19 Education about mental health in health 20 classes would play a significant role in decreasing 21 bullying, and providing greater understanding and 22 empathy for those 1-in-5 youth with a psychiatric 23 disability. 24 We continue to urge your leadership in this 25 important fight. And we know you will be there for 1 us as you always have. 2 We also urge your support in funding 3 after-school services for those youth who have no 4 place to go once school ends. 5 And, also, we have to ramp up the need for 6 more clinicians in schools. 7 You know, unfortunately, the cuts to 8 education in recent years have really negatively 9 impacted these mental-health and counseling 10 services. 11 So, we're advocating strongly for more 12 social workers in schools. 13 And, we must continue to add our voice to 14 those in college with mental-health issues. 15 And I know I've broached this subject with 16 you before, and you've been very responsive. 17 I think what we should do, and this is just 18 our perspective, is we should develop a survey to 19 identify the services available across college 20 campuses, including SUNY and CUNY schools and 21 community colleges. 22 This survey should then be put into a report 23 to be shared with college-aged youth and their 24 families across New York State who would find the 25 information most useful. 1 It would be a great document. 2 Can you imagine, you know, whether you're at 3 Hofstra or SUNY Binghamton, or wherever you are, at 4 Hudson Valley Community College, to have a guide 5 for, if you have a child who has a psychiatric 6 disability, who possibly might get one, you want to 7 see what those services are in those schools. 8 And I think that could be a very effective 9 tool; so that's something we are certainly 10 advocating for. 11 And, finally, I'm asking our greatest 12 champion in the cause in the Senate, to continue 13 your fight for the mental-health tax check-off bill. 14 As we know, it's passed the Assembly several 15 times, but been stalled in the Senate. 16 And no one has ever pushed harder than you 17 have for that bill. 18 I know the Senate has, historically, been 19 against additional tax check-offs, but when it comes 20 to ending the stigma of mental illness, it's time 21 for a change. 22 We urge your continued support and tireless 23 efforts, as you've done on so many other agenda 24 items, to fight to include, all we're looking for is 25 a box, in the New York State income tax for 1 mental-health public awareness. 2 In the hundreds of thousands of pieces of 3 legislation, there should certainly be additional 4 room for a small check-off box. 5 So encapsulate -- just, briefly, to 6 encapsulate the recommendations, there are 7 four recommendations here: 8 Continued support from MHANYS and our 9 affiliates in providing school and other 10 stakeholders in youth and adult mental-health 11 first-aid. 12 That's, clearly, the way that we are going to 13 help stop the violence in school, help end the 14 bullying, through youth mental-health first-aid. 15 And we're already seeing it. 16 And, in Rockland County already, they've done 17 a lot of the training, to begin to raise training, 18 so that's terrific. 19 Secondly, continued support and leadership in 20 the mental-health education bill, and for additional 21 community funding for after-school programs, and 22 inclusion of social workers and other clinicians in 23 schools. 24 Thirdly, developing a survey of mental-health 25 services on existing college campuses, and create a 1 report to be shared with college-aged youth and 2 their families. 3 And, finally, passage of a mental-health tax 4 check-off bill, to end the stigma of mental health 5 and the stigma of mental illness. 6 So, again, I can't thank you enough for all 7 you've done. 8 And I also want to add, you know, 9 Evan Sullivan has been terrific to work with. He's 10 a great person, and very responsive as well. 11 So we're lucky. 12 You've been a great leader for us. And Evan 13 has been a great person to work with. 14 So, if you have any questions? 15 SENATOR CARLUCCI: Well, no, Glenn. I really 16 appreciate your leadership. 17 And, this is great. 18 Really what we need is a list of things to go 19 through of what we need to address. 20 So, so many great ideas, and look forward to 21 working with you on all those issues. 22 Thank you, Glenn. 23 GLENN LIEBMAN: Perfect. 24 Thank you, Senator. 25 1 SENATOR CARLUCCI: Next we'll hear from the 2 executive director of Camp Venture, Dan Lukens. And 3 joined with him is a man of many hats, our county 4 legislator, John Murphy. 5 DAN LUKENS: My name is Dan Lukens. I'm the 6 executive director of Camp Venture, a 7 Rockland County-based agency serving people with 8 developmental disabilities. 9 Thank you for the opportunity to speak today 10 on Olmsted and mental-health services as they relate 11 to supports for people with developmental 12 disabilities. 13 Camp Venture is not a clinical-service 14 provider, nor are we a mental-health provider, so 15 our perspective is as a service consumer. 16 A dual diagnosis of a developmental 17 disability and mental illness is fairly common, and 18 many of the people served by Rockland County 19 developmental-disability agencies also need 20 mental-health services. 21 Providing these services to our population 22 is, however, a very serious challenge for the 23 mental-health system. 24 I credit the new Nyack Hospital program that 25 has been accepting our people, but I think it has 1 been a struggle for us and for them. 2 People with developmental disabilities, 3 especially our people who have very limited or no 4 communication or self-care skills, are not typical 5 for mental-health providers. 6 A crisis program serving people with 7 developmental disabilities not only has to surmount 8 these problems, but they also must manage and 9 protect people who are particularly vulnerable. 10 The new environment that's being driven by 11 Olmsted is built on two assumptions, I'd assert. 12 First, that we can support people in the 13 community; not just some people, but everybody. 14 Second, it assumes that we can stabilize 15 people in a short time, in a few days, and get them 16 back to their lives. 17 My experience with people with developmental 18 disabilities in crisis is that they very often 19 challenge that second assumption. And if the person 20 lives in a certified residence, they become a 21 problem for that residence. 22 Keep in mind that, a certified provider, 23 people are living in close quarters. It's a 24 family-like environment, but they're unrelated 25 individuals, and so a crisis becomes a crisis for 1 the entire residence. 2 In the case of the individual living with 3 their family or in more independent living 4 situations, which will increasingly be the case, 5 that's a burden that may fall on the family or 6 others. 7 In 2002, Camp Venture admitted a young woman. 8 I'm going to call her "Mary." Obviously, that's not 9 her name. Her primary diagnosis was autism. She 10 had, virtually, no communication or self-care 11 skills. 12 After she came to us, she experienced an 13 acute psychiatric crisis that manifested severe 14 self-injurious behavior. 15 These behaviors were such that she needed to 16 wear arm restraints to limit the impact of the blows 17 that she could deliver to her head. 18 She received community-based psychiatric 19 care, but there was very little improvement. 20 Finally, due to the tenacity of her family, 21 her service coordinator, and people in the 22 community, she was admitted to the 23 Kennedy Krieger Institute in Maryland there. 24 Mary was the focus of intensive analysis and 25 treatment. 1 They got her off all her medications, and 2 then they tried new ones under controlled 3 conditions. 4 They worked with her on rudimentary 5 communication and self-care skills, and they 6 development a regime of therapies and an intensive 7 response. 8 When she came back to us more than 9 four months later, there was staff training for our 10 people, so that she could retain the gains that she 11 had accomplished over that time. 12 And that's not typical. 13 I'm sure -- other people, I'm sure, who are 14 more familiar with the mental-health system, can 15 tell you whether that's unusual or not. 16 Mary was not all better. She was certainly 17 not cured. 18 She didn't go back to a job, or anything. 19 She continued to be a very impaired young woman. 20 But in our -- the developmental-disability 21 field, that's all we can hope for. 22 I can't describe what it's like to see 23 someone in the kind of despair that this young woman 24 was in, or to see someone, a young person, whose 25 face is reduced to swollen bruises. 1 We don't need dark places to throw people 2 like Mary away, but we do need a way to treat the 3 most serious, persistent, and complex people with 4 mental illness. 5 In this case, that care had to come from 6 another state. 7 The value we assign to people is not a 8 setting, a place, or a utilization formula. It's a 9 commitment. 10 And so, as we move forward, I hope that's 11 something we'll consider. 12 Thank you so much for your leadership, and 13 for the opportunity to offer a few words today. 14 SENATOR CARLUCCI: Thanks, Dan. 15 Legislator Murphy. 16 JOHN MURPHY: Allow me to reintroduce myself 17 so you can put my remarks in context. 18 I bring to this table 50 years of experience, 19 not as a professional. 20 My career began in the '60s with the 21 Orange Town Narcotics Guidance Council. 22 From there, I moved to Rockland Psychiatric 23 Children's Center; and Rockland Psychiatric Center, 24 where I still serve after 40 years. 25 I'm the president of Camp Venture. 1 I'm also the founder and president of 2 Loeb House. 3 And I served for many years on the county 4 Community Services Board, then-called the Board of 5 Mental Health, Mental Retardation, Alcoholism 6 Services. 7 I say that to you because I think I bring an 8 institutional memory and a broad, broad view of our 9 shared worlds, but I'm going to concentrate just on 10 one topic, the only topic in which I have some 11 degree of expertise; and that's residential 12 services. 13 We must never forget that most of the people 14 we all serve spend most of their life in a 15 residence. Every night, every weekend, in a 16 residence. 17 Compare those numbers to the hours they spend 18 in a clinic, it's overwhelming. 19 The residential-service element is the 20 strongest single component for maintaining mental 21 health. And it's in crises, I tell you. "Crises." 22 And I'll tell you why. 23 There is a push, undeniable, to push people 24 through the system. 25 They want to push them through Rockland 1 Psychiatric Center. 2 They want to push them through the 3 psychiatric hospitals. 4 Where are they pushing them? 5 They're pushing them to an impoverished and 6 under-resourced field. 7 We no longer, the State doesn't want to be in 8 the real-estate business, and I appreciate that. 9 The State has reduced the number of steps in 10 the ladder to the best possible place to live. 11 No more community residence. No more 12 treatment residences. 13 They want to push them, primarily, to 14 supervised apartments. 15 And I'm going to -- I talk street talk, not 16 professional talk. 17 They're taking people who spent 20, 30 years 18 in Rockland Psychiatric Hospital, and they're 19 discharging them. 20 To where? To a supervised apartment? 21 It's patently absurd, and I don't here a hue 22 and a cry about it. 23 If the State wants to move the people through 24 the system to reduce costs, no longer-term care in 25 Rockland Psychiatric Center, no long-term 1 hospitalization in the nursing homes, and such, 2 I agree; but they have to enter a world where their 3 adjustment to community life, where their adjustment 4 to apartments, is staged. 5 You cannot give me, as a provider of 6 services -- and I don't actually -- my executive 7 director, Tom Zimmerman is here -- you cannot send a 8 person who has spent 25 years in Rockland 9 Psychiatric Center to Tom [unintelligible]. 10 That's my point. 11 Now, I think I have an answer. 12 I support the Olmsted Act. 13 I believe our people should be fully 14 integrated into the community. 15 They should not be stigmatized. They should 16 not be isolated. 17 I believe they belong out there with us, but, 18 but, in mixed-use non-certified residences. 19 But, you have to give these residences a 20 whole lot more resource than they have now. 21 We're getting people with criminal records. 22 We're getting people with sexual-offending records. 23 These are people we never got before, and 24 we're not resourced enough to do the right thing by 25 them. 1 Now, my solution is very simple. 2 New York State and the federal government 3 have this huge amount of funding available for 4 affordable housing. 5 Okay? It's for affordable housing. 6 I think it has to be slightly tweaked so that 7 we have a category of capital dollars available to 8 build non-certified mixed-use housing tailored to 9 not only the people who need support in every case 10 of the word, but to our staff. 11 We have the most underpaid -- our people make 12 less money than the people in McDonald's. 13 It speaks to our values, our priorities. 14 It's absurd. 15 And in this county, you need a lot of money 16 to live, and you need a lot of money to pay rent. 17 So what are we looking at? 18 We're looking at an unresourced staff of 19 people who provide hands-on care to our loved ones; 20 We're looking at the Olmsted Act which 21 insists that everybody be in mixed-use housing; 22 And we're looking at the fact that the State 23 is eliminating all of the many manifestation of 24 residential services. 25 That's what we're challenged with; and I say 1 there's an answer. 2 People like me would be more than happy to 3 build affordable housing that's tailored to the 4 people we serve and the people who we -- take care 5 of, as well as other people in need of affordable 6 housing. 7 My pitch to you, Senator, is one thing: 8 When you're looking at this incredible list 9 of needs of our population, remember something: 10 Every single person on that list has to have 11 a place to live. 12 Thank you. 13 SENATOR CARLUCCI: Thank you. 14 Thank you, gentlemen. 15 [Applause.] 16 SENATOR CARLUCCI: And we've been joined by 17 Assemblywoman Ellen Jaffee, who is a member of the 18 Mental Health Committee in the Assembly, and, we're 19 in her district right now. 20 ASSEMBLYWOMAN JAFFEE: I apologize for being 21 late. I had another appointment that I had to 22 attend, with a group of young women from 23 Suffern High School, and I didn't want to disappoint 24 them. I had scheduled that meeting prior to knowing 25 about this hearing. 1 But, thank you very much, Senator, and I look 2 forward to hearing the response and information from 3 the community that's so essential for us to be able 4 to move forward and be responsive in the state. 5 SENATOR CARLUCCI: Thank you, Assemblywoman. 6 Our next panel is going to be on the topic of 7 "Raise the Age." 8 We have Paige Pierce, Jeremy Kohomban, 9 Gabrielle Horowitz-Prisco, and Avrill Lindsay. 10 PAIGE PIERCE: Good morning. 11 My name is Paige Pierce, and I'm the 12 executive director for Families Together in 13 New York State, a non-profit organization whose 14 mission is to provide a unified voice for families 15 of children and youth with social, emotional, and 16 behavioral challenges. 17 I represent thousands of families from across 18 the state, and as such, I've dedicated my career to 19 advocating for children with mental-health and other 20 cross-systems challenges. 21 As you can imagine, I've heard many 22 heart-breaking stories over the years relating to 23 children suffering needlessly. Often, those 24 accounts have been from parents whose children are 25 suffering from emotional disorders that -- and have 1 been thrust into the criminal justice system, with 2 disastrous results. 3 Such accounts fuel our work every day at 4 Families Together to provide better, and do better, 5 by our children. 6 It is with this in mind that I sincerely 7 thank you for initiating this dialogue regarding the 8 intersection between mental health and juvenile 9 justice. 10 As you're aware, New York State is one of 11 only two states in the nation that automatically 12 prosecutes 16- and 17-year-olds as adults in the 13 criminal justice system, the consequences of which 14 often bar opportunities to productive citizenship, 15 propel youth toward a path of recidivism, and, all 16 too often, leave permanent damage to their 17 already-fragile brain development and mental health. 18 To date, this issue has primarily been 19 regarded by the Legislature as a corrections issue; 20 however, it's imperative that the mental-health 21 components be examined and carefully planned for. 22 Accordingly, the National Center for 23 Mental Health and Juvenile Justice -- according to 24 the National Centers of Mental Health and 25 Juvenile Justice, up to 70 percent of juveniles 1 cycling through the juvenile justice system suffer 2 from mental-health disorders, with at least 3 20 percent experiencing disorders so severe that 4 their ability to function is significantly impaired. 5 Their illnesses include major depression, 6 bipolar disorder, conduct disorder, ADHD, anxiety 7 disorder, and other potentially debilitating 8 conditions. 9 Incarcerating a child suffering from one or 10 more of these disorders in an adult facility, or 11 even a juvenile facility, absent the appropriate 12 supports and services, can, and often has, 13 catastrophic results for their development and for 14 public safety. 15 The Raise the Age New York campaign has been 16 shining a spotlight on the realities of life for 17 juveniles inside the walls of an adult facility. 18 They're often sexually preyed upon by older inmates, 19 physically assaulted, and placed in solitary 20 confinement for up to 23 hours a day. 21 These deplorable conditions were elevated in 22 a national level -- to a national level recently by 23 a scathing report released in August by 24 U.S. Attorney Preet Bharara regarding teens 25 incarcerated at Rikers Island. 1 The details of this report provided for a 2 shocking indictment of a system that is not only 3 failing our children, but putting them at great risk 4 of experiencing trauma, and even becoming adjusted 5 to this culture of violence, contributing to 6 increased recidivism when they are released. 7 The investigation and resulting report 8 spanned a period of time between 2011 through the 9 end of 2013, and exposes what is -- what it refers 10 to as a culture of violence against teenage inmates, 11 particularly those with mental illnesses. 12 51 percent of the teens incarcerated at 13 Rikers Island have a mental-health diagnosis. 14 Chilling depictions of the experiences of 15 these youth were detailed at length. 16 I have, in my written testimony, several of 17 those citations. 18 The report goes on for a chilling 79 pages. 19 And while there have been -- there have been, 20 and will continue to be, heated and outdated debates 21 on "tough on crime versus smart on crime," I can't 22 imagine anyone would sanction such treatment of 23 juveniles affected by a mental-health challenge. 24 This is bigger than any one system. 25 All systems can play a role in ending the 1 school-to-prison pipeline. 2 Our current approach does not correct 3 criminal behavior; it perpetuates it. 4 Our current approach does not treat 5 mental-health disorders; it exacerbates them. 6 In current -- in direct conflict with all 7 emerging evidence, we continue as a society to push 8 youth into isolation at the very time when they need 9 to be pulled back into their communities to 10 understand and reconcile the consequences of their 11 actions and learn to live with their challenges. 12 Every day we travel down this road is another 13 lost opportunity to offer these youth a different 14 course. 15 The time has come to offer more opportunities 16 than we do barriers. 17 The time has come to reconstruct or adjust 18 the system to one that is developmentally 19 appropriate, driven by evidence, considers carefully 20 the intersecting systems of care, such as 21 mental health, substance abuse, education, and 22 corrections, and examines the costs, both human and 23 financial. 24 While the U.S. Attorney's report focuses only 25 on Rikers Island, I'd like to tell you about a few 1 other families that we represent and put a face to 2 such of -- to some of these families. 3 All the names in the stories have been 4 changed for purposes of confidently. 5 I'd first introduced you to "Daniel." 6 In many respects, Daniel was similar to that 7 of most teenage boys. He liked playing video games, 8 socializing with friends, and playing basketball. 9 In some respects he's a bit different than 10 most teenage boys, as he suffers from an untreated 11 mental-health -- from untreated mental-health 12 challenges. 13 In 2010, 1 out of 5 Americans experienced a 14 mental-health challenge, and 70 percent of children 15 and youth in need of mental-health services did not 16 receive the treatment they need. 17 He could be my son, your son, a nephew, or a 18 close family friend. 19 He could be any race or religion. 20 He could also be in a safe place today, but 21 he's not. 22 His life trajectory was forever altered when 23 Daniel was 16 years old. He was arrested for 24 stealing Chinese food from a delivery car, a choice 25 made under pressure of his peers, and one that would 1 find him in an unimaginable situation. 2 The official charge was robbery, a violent 3 felony. 4 Because he was 16 years old, he was 5 prosecuted as an adult; and, thereby sent to an 6 adult facility, and the consequences of this 7 incarceration have been devastating. 8 Tragically, the youthful-offender status he 9 was awarded was not enough to protect him from what 10 came next. 11 While in custody, he was raped by a fellow 12 inmate. 13 Congressional findings reported in the 14 2003 Prison Rape Elimination Act that juveniles were 15 five times as likely to be sexual assaulted in adult 16 facilities rather than juvenile facilities, often 17 within their first 48 hours. 18 Daniel, unfortunately, became such a 19 statistic. 20 The impact of such trauma has had lasting 21 effects. 22 Although he's since been released, he 23 continues to suffer from severe and debilitating 24 posttraumatic stress disorder. 25 Had Daniel committed his crime in a 1 neighboring state where children are not tried as 2 adults, his life course could have been drastically 3 different. 4 Perhaps he could be on a path to recovery, 5 nearing the end of his college experience, looking 6 forward to embarking on a career path that would 7 lead to product citizenship. 8 I have a couple of other stories of young 9 people with mental-health challenges who have been 10 inappropriately placed into the criminal justice 11 system, and I'll let you read those, in the interest 12 of time. 13 I have to tell you about this one kid. He 14 has Asperger Syndrome. 15 And I have a son who has Asperger Syndrome. 16 And, as you probably know, they often have, 17 like, obsessions with certain things. 18 This kid was obsessed with women's shoes. 19 And, he broke into a local gym and stole some 20 women's shoes out of a locker, and he was arrested 21 as an adult, because he is was 17. 22 You know, luckily, he ended up in county jail 23 rather than state prison. 24 But, you know, clearly, he had -- it was a 25 manifestation of his disability. 1 Given the Governor's prioritization of 2 raising the age of criminal responsibility, and the 3 anticipated recommendations of his commission on 4 youth, public safety, and justice, we expect a 5 package of reform bills early in 2015's legislative 6 session. 7 We ask, that when the ensuing discussions 8 take place in Albany, you recall what you have heard 9 here today, and advocate: 10 That no youth are housed in adult jails and 11 prisons; 12 Ensure that all youth are treated 13 developmentally appropriately for their age 14 regardless of the crime charged; 15 Ensure that a robust array of mental-health 16 and substance-abuse services and supports are 17 available; 18 Adjudicate all youth under the 19 Family Court Act, where judges have a full array 20 of -- or rehabilitative and restorative tools; 21 Reduce detention and placement in juvenile 22 facilities; 23 And, increase the ability to divert cases 24 from court and at arrest. 25 And thank you for your consideration. 1 SENATOR CARLUCCI: Great. 2 Thank you, Paige. 3 DR. JEREMY KOHOMBAN: Thank you. 4 Good morning, Senator. 5 Good morning, Assemblywoman. 6 Thank you for the opportunity. 7 I'm Dr. Jeremy Kohomban. I'm the president 8 and CEO of the Children's Village and 9 Harlem Dowling. 10 Together, we serve over 15,000 children, 11 annually, in residential -- short and residential 12 and community programs. Also, programs right here 13 in Rockland County. 14 We also serve in the Netherlands, in Iraq, 15 and in Australia. 16 Currently, in New York, we work with close to 17 home, under the Governor's mandate, to return 18 children to the closest location possible. And we 19 work more with the children that are considered 20 "specialized." 21 So these are the high-end, high-need 22 children: the fire-setters, the young people who 23 have problematic sexual behavior, substance abuse. 24 Our experience working with them has informed 25 our thinking around this issue. 1 And as I heard Paige speak, I quickly made 2 some notes here, because I want to try to go deeper 3 into some of the statistics that Paige spoke about, 4 and elaborate on some of the nuances that we see 5 within that group. 6 So, let me start by saying, by repeating 7 something that you already know, that the teens that 8 we're talking about are predominantly poor, or 9 they're Black or they're Brown. 10 That's it. 11 We're not talking about all kids in New York. 12 We're talking about select children coming 13 from select neighborhoods, from certain families in 14 our community. 15 And wherever we live, we know where these 16 children are coming from, so this is not something 17 that's -- we may not think about it, but it's not 18 invisible to us. 19 They often come -- they, also, in many of our 20 largest cities, they often come from segregated 21 communities, and from -- and, most often, from 22 highly-stressed family situations. For whatever 23 reason, they come from highly-stressed family 24 situations. 25 It is easy to believe with this group of 1 children that mental illness is a cause for their 2 behavior and their lack of conformity. But in our 3 experience, it's not true. 4 When it comes to these children, the term 5 "mental illness" is often broadly applied, with 6 little distinction between serious and persistent 7 mental illness. 8 Think schizophrenia, that we often think 9 about when we think about mental illness; or the 10 symptoms of what we call "situational mental 11 illness." 12 What is most damaging here is that, when we 13 don't make the distinction between serious and 14 persistent mental illness and situational mental 15 illness, we kind of lump our children together with 16 a broad-brush approach, and we expect treatment to 17 be the final solution. 18 And it's easy to think about that, because 19 when -- as you heard in Paige's testimony, the 20 national statistics are pretty clear. 21 About 70 percent of our children have some 22 type of emotional disorder that can be easily 23 categorized as mental illness, but less than 24 20 percent of them have what we call "persistent and 25 serious mental illness." 1 In fact, in our work, we find that number to 2 be even somewhat lower. 3 But, if you -- if you followed some of the 4 experts on this issue, and most recently, I think it 5 was on Monday, NPR had a piece with 6 Dr. Allen Francis, a noted psychiatrist, and the 7 former head of the department of psychiatry at Duke, 8 what he said -- and I want to quote him, he said, 9 "No one is harder to diagnose than a child or a 10 teenager. The tendency to over-diagnose is 11 particularly problematic among teens." 12 So there's a lot of over-diagnosis that goes 13 on, and a lot of assumptions that are made, that the 14 kids who exhibit, maybe, some behaviors on the 15 Asperger spectrum, or behaviors that are tied to 16 emotional disorder, or family trauma, are somehow 17 mentally ill. 18 Recognizing situational mental illness from 19 chronic and persistent and serious mental illness is 20 absolutely essential. 21 Situational mental illness is often caused by 22 terrible pain. 23 The pain of family trauma. 24 The pain of loss. 25 The pain of long-term system enrollment. 1 You know, kids in foster care, when they have 2 no one in their lives, can begin to exhibit 3 situational mental illness. 4 Abject poverty. Living in some 5 neighborhoods, living with the stress of race and 6 racism, the lack of opportunity, and the feelings of 7 abandonment, are often causes for situational mental 8 illness. 9 In many cases, behavioral issues in community 10 and school, and even gang involvement, and marijuana 11 use, or low-level drug use, are coping mechanisms 12 for kids that are dealing with situational mental 13 illness. 14 Don't get me wrong; both kinds of mental 15 illness can have long-term debilitating 16 consequences, but the treatment approach for each 17 has to be drastically different. 18 Treating situational mental illness begins 19 with belonging, and I want to repeat that, it 20 absolutely begins with belonging; meaning, that 21 there needs to be at least one person who loves this 22 child unconditionally. 23 A system or a government or a 24 Children's Village, no matter how good we are, are 25 not a substitute for that kind of belonging. 1 In the absence of belonging, it is incumbent 2 that we find a way to create belonging. 3 That's our job. 4 It's just like with our own children. These 5 children do better, and they often thrive, when 6 they're loved and when they belong. 7 They deserve our optimism. They deserve our 8 enthusiasm. 9 They need structure, they need guidance, they 10 need support, and they need honesty. 11 They should not as be burdened with our 12 well-intentioned but often misguided labels that 13 encourage a culture of low expectation. 14 The reality is that, when you're labeled 15 "mentally ill," you're often labeled as low -- with 16 low issues of -- with -- it's often a prognosis of 17 low performance, low expectations, and more often 18 than not, in New York, you're part of a system. 19 And systems don't make you better; people and 20 families do. 21 So I have two recommendations. 22 One is, let's raise the age. 23 We don't want to be behind North Carolina. 24 Right? 25 We can't. We're better than that. 1 And, two -- actually it's three 2 recommendations -- fund the services at two levels, 3 because we can't just raise the age and not fund the 4 services. 5 First, let's fund our communities where our 6 kids come from. 7 You know, if we don't correct the root causes 8 and address the issues at the community level, these 9 communities will continue to send kids into the 10 system. 11 And we don't want kids growing up in the 12 system. We don't want kids growing up at 13 Children's Village. 14 We don't want that. 15 Kids need families, kids need communities. 16 And, then, 30 percent of our funding should 17 to go individual wraparound that support parents, 18 and loves parents that care and love, and 19 foster-parents our children, to be able to take care 20 of them. 21 And the third recommendation is, we need a 22 transparent tracking system. 23 And I bet you Gabrielle is going to say this. 24 We need to know what works, and what doesn't. 25 We don't want to just put money, year after 1 year, and assume that it's working. We have too 2 much of that going on. 3 Let's track this carefully. 4 It's a small group. We can do this by child. 5 We should track them well into their 20s. 6 What's working? 7 And if it's working, fund it. 8 If it's not, let's stop. 9 Thank you. 10 [Applause.] 11 SENATOR CARLUCCI: Thank you. 12 AVRILL LINDSAY DENNIS: Good morning. 13 Thank you for having us, and thank you both 14 for your leadership. 15 I'm Avrill Lindsay Dennis. I'm a licensed 16 clinical social worker, 20-year NASW member, and 17 social-work advocate, mental-health clinician, and 18 administrator. 19 Founded in 1955, the National Association of 20 Social Workers (NASW) is the largest membership 21 organization for professional social workers in the 22 world, with 132,000 members in the United States and 23 overseas. In New York alone, there are more than 24 16,000 NASW members. 25 The New York State chapter, which encompasses 1 all of New York, except for the 5 boroughs of 2 New York City, has over 8500, while the 3 New York City chapter has the remainder. 4 Both nationally and statewide, the 5 organization works to enhance the professional 6 growth and development of its members, to create and 7 maintain professional standards, and to advance 8 [unintelligible] and social-work policies. 9 As a representation -- as a representative of 10 NASW in New York State, I stand before you today on 11 behalf of more than eight and a half thousand social 12 workers in strong support of raising the age of 13 criminal responsibility. 14 Science and research have shown, time and 15 time again, that the adult correction system does 16 not work for adolescents. 17 20 years of experience in New York State has 18 shown us the same. 19 We need to change this. We have yet to 20 change this. 21 Based on my experience with these youth, 22 I could quote numbers to you, or tell you life 23 stories. 24 The youth we work with, the children, were 25 missed for services at some point in their lives; 1 did not receive accurate or effective diagnosis, 2 treatment, or supports; and, largely, as a result of 3 untreated mental-health issues, have behaviors that, 4 in turn, lead them to be criminalized. 5 I choose to share with you life stories, and 6 as you have heard, and will hear, from my colleagues 7 in regards to the scientific evidence of youth 8 resiliency, brain function, cost analysis, and 9 family involvement, we know that adolescents and 10 children are resilient and can learn, and they're 11 still growing into the persons in which they will 12 be. 13 Experience has shown me that our society's 14 focus should to be treat and rehabilitate these 15 young people, to give them a chance at a future 16 instead of criminalizing them and traumatizing them 17 further. 18 Outcomes for society are much greater and 19 safer when we choose this route. 20 It is an investment in the individual and in 21 our communities. 22 Despite the fact that, in New York, a 23 16-year-old youth is not considered old enough to 24 vote, nor can get an ID without parental consent, 25 drive without parental consent, get medical or 1 psychiatric care without a guardian, they are 2 automatically treated as an adult once they commit a 3 crime. 4 Why do we still think they have adult 5 responsibility for some really bad decisions, when 6 we show that we know they're not able to make most 7 adult decisions alone. 8 There's a public misconception that these 9 youth come from broken homes, non-existent homes, or 10 families who don't care about them. 11 A fair percentage of these kids do, in fact, 12 come from homes with caring and supportive adults. 13 Those adults may face challenges in 14 understanding the mental-health needs of their 15 youth, because they're unfamiliar with diagnosis 16 trajectory, or believe that the moods and behaviors 17 associated with the underlying issues are within the 18 youth's control. 19 Other adults have spent years pleading us for 20 help with their kids, fully understanding the risks. 21 A small percentage do, in fact, have limited 22 stable adult connections, sometimes due to family 23 issues themselves, but, more often, due to having 24 had such difficulties for so long without those 25 supports that the adults, too, are tired. 1 Families need support in understanding the 2 benefits of treatment, but, more so, in how to 3 access treatment options. 4 This last group of youth is at greatest risk, 5 with the correlation between the history of being 6 abused and neglected and criminal behavior. 7 These crossover youth we touch in our 8 systems; those same systems that we need to increase 9 the assessment process, to work towards treatment 10 for early trauma of youth, gearing towards 11 prevention of later, more complex mental-health 12 issues. 13 Youth in our systems -- this has been spoken 14 of already -- are disproportionately Black, Brown, 15 and impoverished. 16 Close-To-Home legislation was a huge step in 17 the right direction. It affords us the ability to 18 treat youth in the community, to link them to 19 services and education, community programs, and to 20 be close to their families, receiving passes and 21 therapy with the family as a whole. 22 We're moving towards a treatment focus that 23 replaces the punitive-detention model, one we know 24 does not work for adolescents. 25 Current administrators are demonstrating 1 interagency collaboration from New York City and New 2 York State agencies to the not-for-profits, all 3 working for the same common goal: to reach youth, 4 rehabilitate and treat youth, strengthen families, 5 and, in turn, our communities and everyone's future. 6 New York State needs to increase and 7 strengthen mental-health services available. 8 Budgetary concerns over the last 10 years 9 have had a significant impact on the number of 10 in-patient hospital beds available, mandates 11 governing clinic hours, and the availability of 12 effective crisis response that does not involve a 13 police-department response. 14 Lack of access to services, combined by 15 ongoing stigmatization of mental-health issues, are 16 impediments to treatment availability. 17 It's vitally important to these -- to 18 supporting these young people is adequate, 19 affordable, accessible, and comprehensive 20 mental-health assessment and treatment. 21 Some successes: 22 A 15-year-old young lady with some depression 23 and impulsivity, both linked to untreated PTSD which 24 led her to make some really bad choices. 25 Within her first month in placement she was 1 hospitalized for bizarre, aggressive, dangerous, and 2 regressed-looking behaviors. 3 Following six months in treatment, duly 4 placed in both juvenile justice and foster care, she 5 returned to mom's home, with the goal of attending 6 nursing school, after receiving the foster-care 7 award for the year, a very different young lady than 8 the one who we first met. Realizing her potential 9 and accepting those in her life who could help her, 10 she moved in the right direction. 11 A 17-year-old that had all but given up, also 12 duly placed. No stable adult relationships to 13 mention. 14 The first sign of progress we saw was being 15 released from criminal court one night at about 16 11 p.m., to herself. 17 Instead of hitting the streets, we got a call 18 asking for a ride back to placement. 19 We saw that as a huge strength and huge 20 progress. 21 It was a long road from there, but with 22 treatment, and a relationship with her father began, 23 later she returned to his home, and enrolled in a 24 GED program. 25 She learned to express herself through 1 poetry. And for the first time in a long time 2 learned to develop trusting relationships. 3 Another youth we work with speaks of his time 4 in Rikers by saying that the corrections' 5 "violence being condoned" attitude really leads to 6 helplessness. 7 All these youth have really done is missed 8 opportunities for treatment in other venues. 9 Some families have tried diligently, as 10 I mentioned, to reach services, only to be turned 11 away, or to have their case closed when an 12 adolescent doesn't make an appointment. 13 Adolescents soak up the environment around 14 them. They can learn and grow and will take in what 15 they experience. 16 What experiences are we going to provide to 17 them? 18 Moving youth into an adult system that has a 19 known culture of violence only leads to traumatizing 20 youth. 21 The trauma often presents itself in 22 behaviors, leading to youth -- leading youth into 23 similar situations where they would be traumatized 24 again. 25 Ongoing trauma we know is a trigger 1 underlying mental illness, or takes some of those 2 simpler mental illnesses, as Jeremy spoke about, and 3 make it much more complex. The cycle then 4 continues. 5 There are a multitude of issues in the adult 6 correctional system that need to be addressed, and 7 this is a separate issue. 8 Adolescents should not be part of this 9 process. 10 To quote one young lady from early in my 11 juvenile justice experience, on the phone with her 12 mother, begging her mom to sign Consent For 13 Medication so that she, and I quote, "didn't have to 14 go through this over and over again in her life, 15 remaining locked up. To give her a chance at 16 treatment and in life." 17 The headlines grab the outliers in our 18 youthful-offender system. They sensationalize a 19 handful of heinous violent acts that are committed 20 by a handful of youth. 21 This paints a very skewed picture for society 22 about who these youth are we're talking about today. 23 We're talking about the majority that get 24 caught in our criminal justice system here and now; 25 those who we can truly change the trajectory of 1 their future. 2 Critics argue that victims of youthful 3 offenders have to live with the trauma of being a 4 victim, so why should the offender get off easy? 5 Not treating a child as an adult does not 6 correlate with letting an offender off easy. 7 The road to treatment and rehabilitation is 8 not an easy one. 9 The reality is, that treating all youthful 10 offenders as youth actually decreases recidivism; 11 increases the likelihood of those individual 12 successes. 13 The victim is still, unfortunately, a victim. 14 But with treatment, assessment, and care, the 15 offender has a greater chance of not offending 16 again. 17 Adolescents are impulsive here and now. It 18 can take many, many months to have a case heard in a 19 criminal court, meaning that no matter what the 20 punishment, the youth is frequently unable to 21 connect to those too. 22 We ask New York State to change its position 23 and become a leader in the evidence-based policies, 24 uhm -- policies and practice, ongoing research and 25 evaluation, with input from families and 1 stakeholders, to be used by service providers in the 2 juvenile justice system, as NASW tasks social 3 workers to do. 4 We should be encouraging the child-welfare 5 system and the juvenile justice systems to develop 6 strategies and policies that will provide for 7 greater levels of collaboration, screening, data 8 sharing, assessment, case management, supervision, 9 and interagency collaboration. 10 Kids need care, individualized assessments, 11 family work. Some need very specialized treatment, 12 and some need to catch up on school, rebuild or 13 build important adult connections. 14 With the variety of needs, all youth coming 15 into the system should be treated as youth and 16 individually assessed for what they and their family 17 truly need. 18 Programs should have the capacity to do 19 individualized treatment plans for youth and 20 families, to address short-term and significant 21 mental-health issues, to make referrals post release 22 for continued treatment and continuity of care. 23 There should be no one-size-fits-all answer. 24 One size never fits all. 25 SENATOR CARLUCCI: Thank you. 1 GABRIELLE HOROWITZ-PRISCO: Good morning. 2 My name is Gabrielle Horowitz-Prisco. I'm 3 the director of the Juvenile Justice Project at the 4 Correctional Association of New York. 5 We're an independent non-profit founded in 6 1844, tasked by the New York State Legislature with 7 monitoring conditions inside the adult prisons. 8 We also do policy work and work with young 9 people in the system. 10 Thank you both. 11 As you've heard already, trauma and abuse and 12 mental illness are actually the consequences of our 13 current criminal justice system, so they both drive 14 children to enter the system, but the system also 15 causes exactly that which, ostensibly, it is 16 designed to alleviate. 17 I talk sometimes about how I came to this 18 work as an attorney for children in family court in 19 child abuse and neglect cases, and I sometimes talk 20 about the dinner-party conversation. 21 And I'd be at a dinner party, and it would go 22 like this: 23 "What do you do?" 24 "I'm an attorney." 25 "What kind of attorney?" 1 "I represent children in child abuse and 2 neglect cases." 3 And people would act like I was 4 Mother Teresa. 5 You know, "How do you that? That's so hard. 6 I could never do that. Wow, I really admire you." 7 And I would say, like, Yes, you could it. It 8 is hard. But, you know... 9 And, then, I also represented kids in the 10 juvenile justice system in juvenile-delinquency 11 cases. 12 So, same dinner party, different day, it's 13 not that I went to so many of them: 14 "What do you do?" 15 "I'm an attorney." 16 "For who?" 17 "For kids." 18 "Kids, what? 19 "Kids accused of crimes." 20 "Oh. How do you do that? What if they're 21 rapists? How do you represent those? What if 22 they've done a murder? Really? How do you -- you 23 feel okay about that?" 24 And I always thought, it's the same kids, 25 I had the same job. And how society viewed even me 1 as a helper. 2 In one hand, I was elevated, practically 3 beatified. And in the other hand, there was sort of 4 a disbelief, and a distancing, "How can you 5 represent those kids?" 6 So I'm here to talk about how -- two things: 7 One is adolescent brain development; 8 And the second is the incarceration of 9 children, and the impact on their wellbeing, 10 particularly young people with mental illness. 11 But I'm also here to just kind of bear 12 witness to the fact that they're all our kids. 13 That as you've heard from my colleagues, 14 they're kids who need our help and our love and our 15 connectedness, and need, if anything, treatment and 16 services; but absolutely do not need to be locked in 17 cages, locked in solitary confinement, and abused at 18 the cost of taxpayer dollars, which is what is 19 currently happening. 20 A little bit on adolescent brain development. 21 As you heard from Avrill, the New York State 22 law is currently riddled with hypocrisy. 23 We don't allow children at 16 to get a fake 24 tan. 25 We don't allow them to get a tattoo, or to 1 get an AT&T cell phone contract, or to purchase 2 cigarettes. 3 However, they can be interrogated by the 4 police without a parent present. 5 If a child is 16 or 17, their parent doesn't 6 even have to be notified. 7 Your child could be taken and kept overnight 8 by the police, and there's no legal requirement that 9 a parent even be notified, because that parent -- 10 that child is considered an adult under this one 11 provision of New York State law which contradicts 12 all the rest of the law. 13 Not only does this not make sense, it's not 14 consistent with an extensive body of scientific 15 literature that talks about why kids are different. 16 The prefrontal cortex of the brain is the 17 part of the brain that weighs risk versus reward, 18 future planning, impulse control, rational 19 decision-making. 20 It's also one of the last parts of the brain 21 to develop, and it's not fully mature even in late 22 adolescence. 23 The literature actually talks about 24, 25, 24 being the age at which the brain completes this 25 stage of development. 1 I don't need to go through an extensive list 2 of adolescent, you know, brain-development research, 3 but I'll say, we know this. 4 If you've been a teenager, if you've raised a 5 teenager, if you love a teenager, you know that 6 teenagers make very stupid decisions. 7 I sometimes talk about, when I was 17 years 8 old, growing up in Staten Island, New York, 9 I shoplifted in Macy's because the line was too 10 long, and my boyfriend was waiting in a car in the 11 parking lot. And I actually believed that it was 12 unfair of Macy's to have such a long line when 13 I needed to go. 14 I mean, I really remember thinking, like, 15 It's their fault the line is so long, and I have to 16 go, and he's waiting, and this is very important. 17 It was related to my prom, I think. It was, 18 like, something I needed for prom, so, I'm going to 19 take it. 20 And, you know, I wasn't caught. 21 And, in retrospect, had I been caught, 22 I would have been shielded by my race, by my 23 privilege as a middle-class, you know, young girl 24 growing up on Staten Island, by having educated. 25 The system I would have entered, if I even 1 entered a system, would have been a very different 2 one. 3 I probably would have been released to my 4 parents. Maybe done some community services. 5 Whereas, I represented children who went to 6 prison for similar things. 7 But when I tell that story, it's like a human 8 way of putting a face on what the evidence tells us; 9 which is, teenagers make terrible decisions, and 10 they outgrow that, because the reason they make 11 terrible decisions, particularly when in groups, is 12 because their brains have not finished developing. 13 However, there are ways that we can support 14 children, including during adolescence. 15 And the very same scientific body of research 16 tells us we can design interventions that have 17 adolescent brain development in mind. 18 So some of the options you heard about from 19 Jeremy and from Avrill are the smart, 20 forward-thinking, twenty-first-century solutions 21 that New York State has a chance to design. 22 You as policymakers have the ability to 23 become a national leader to help New York go from 24 being last into the country to the forefront of 25 harnessing the power of evidence and research, to 1 say, What works? How do we fund what works? 2 And I want to talk a little bit about kids in 3 adult jails and prisons, but I want to say one thing 4 before I do that, which is, as you've heard from my 5 colleagues, prosecuting children as adults is the 6 opposite of tough on crime. It creates crime. 7 So if your colleagues say to you, "Well, what 8 about victims?" I think a very smart answer is, 9 "We're creating more victims in the current system. 10 If you're so concerned about crime, then help kids 11 get help, so they don't get released from jail and 12 prison to go on and create more future victims." 13 This is demonstrated. 14 The non-federal Task Force on Community 15 Preventive Services, which is a long way of saying 16 an independent task force, did a systematic review 17 of published scientific evidence, looking at kids 18 who are in the adult system versus the youth system. 19 This is a meta-study, so they looked a 20 seven studies out there, and they found a 34 percent 21 relative increase in subsequent violent or general 22 crime for kids who are in the adult system versus 23 the youth system. 24 A 34 percent increase. 25 Other studies have shown that violent crime, 1 in particular, increases when kids are prosecuted as 2 adults. 3 So I want to conclude by just talking about 4 some of the risks for kids in adult jails and 5 prisons. 6 You've heard a little bit about kids in adult 7 jails and prisons are at grave risk. 8 Kids in adult jails are 36 times more likely 9 to commit suicide than those in youth facilities. 10 They're more likely to face an armed attack, 11 by 50 percent, as compared to young people in youth 12 facilities. 13 And they're nearly 100 percent as likely to 14 be beaten by staff when compared to young people in 15 youth facilities. 16 They also can be placed in solitary 17 confinement, as Paige spoke about, for up to 18 23 hours a day. 19 Although New York City has recently said 20 they're going to stop this practice for Rikers, 21 there are no plans to stop the practice in the 22 county jails. 23 And even the Department of Corrections and 24 Community Supervision that runs the state prison 25 system is currently in settlement for a lawsuit, 1 where they may reduce some of the hours of solitary 2 confinement, but there's still, essentially, 3 solitary confinement of young people. 4 And I want to say this, going back to my days 5 in family court: 6 When I represented kids in child abuse and 7 neglect hearings, if we got a case in which a parent 8 locked their child in their bathroom for 23 hours a 9 day, and cut a hole in the bathroom door and shoved 10 some school papers through the door, but didn't let 11 the child out; and, when they did let them out, it 12 was for an hour a day to stand on a balcony and walk 13 in a circle or do a pull up on a door; and, they 14 gave them only limited food shoved through that same 15 slot in the door; and, they denied them all human 16 contact, child-welfare services would 17 emergency-remove that child. 18 There would be no hearing first. 19 The child would be emergency-removed from the 20 home. All other children from the home would 21 probably be removed. 22 The parent would absolutely be charged with 23 child abuse, and, potentially, criminally charged in 24 criminal court as well. 25 Right now, as we sit here, despite the 1 Department of Justice investigation that Paige spoke 2 about, where the U.S. Attorney found that children 3 on Rikers Island are being brutally abused. They're 4 being abused physically by corrections officers, and 5 they're also in solitary confinement, they remain in 6 those conditions. 7 Those children need to be emergency-removed 8 from adult jails and prisons, including 9 Rikers Island. 10 Not develop -- 11 [Applause.] 12 GABRIELLE HOROWITZ-PRISCO: Thank you. 13 Not develop a plan and wait three months. 14 Not figure out where they're going to go. 15 We would not allow a parent to do to a child 16 what New York State is funding, paying for, 17 government employees to do to children. 18 It is child abuse, and it must end. 19 It must end right now. 20 The answer is getting children out of adult 21 jails and prisons and into the youth system. 22 Ideally, keeping kids in their communities 23 with the kinds of intensive services that you heard 24 about from Avrill and Jeremy. 25 But if kids are going to be confined, they 1 should never be in an adult jail and prison. 2 The last thing -- I'm a little worked up so 3 it's hard to pause. 4 The last thing that I want to say, is that 5 you and your colleagues in the Legislature have done 6 a great job of supporting and developing the youth 7 justice system in New York State. 8 So it is even more reprehensible that 16- and 9 17-year-olds are denied the access of the youth 10 justice system. 11 For example, under the past couple of budgets 12 you created and passed, the Supervision and 13 Treatment Services for Juveniles Program, which is 14 the "STSJP" funding, it's a permanent funding stream 15 to support community-based services for youth, with 16 the goal of keeping kids out of detention and 17 residential care. Specifically, it provides support 18 for young people with mental illness. 19 You as legislators have done a great job 20 creating fiscal infrastructures in the youth justice 21 system; yet, 16- and 17-year-olds don't have access 22 to those advantages. 23 So in conclusion, there are 24 five recommendations that I urge you to consider: 25 The first is, obviously, that New York State 1 has to raise the age of criminal responsibility. 2 Like Paige indicated, the Governor has shown 3 this to be a priority. He has created the 4 commission on youth justice and public safety, which 5 our executive director, Sophia Elijah (ph.), is one 6 of co-chairs of. 7 We look forward to the commission's 8 recommendations, and to seeing the specific 9 suggestions for how this could be done. 10 The second, is to remove children from adult 11 jails and prisons immediately. 12 Again, we would not allow a child to remain 13 in these conditions in their parents' home. We 14 certainly shouldn't allow them to remain in 15 government custody in these conditions. 16 The third, is to end the practice of solitary 17 confinement for all children, period, regardless of 18 where they are. And also pointing out that the 19 solitary confinement of children is considered 20 torture. 21 And the U.N. and other bodies -- and 22 international bodies have spoken about it as a 23 violation of, really, basic human rights, and as 24 torture. 25 Finally, as Jeremy spoke about, funding needs 1 to go, not just into rejiggering the system so kids 2 are now locked up in youth facilities, but into the 3 kind of community-based programs, prevention, 4 wraparound services, and treatment that works. 5 And, also, investing in communities so kids 6 don't need to be in any system. 7 I regularly speak to kids and parents who are 8 in the system, and I hear things, like: 9 In my neighborhood there is no after-school 10 center. There are no programs. You walk out of my 11 house and there's a deli, and there's a fast-food 12 restaurant, and there's a Chinese food restaurant, 13 but there's no YMCA or no JCC or no park, no green 14 space, no after-school program. The school shut 15 down and there's no place for the kids to go, so 16 they go to the corner. 17 Kids need spaces to play, to dream, to be 18 with other kids. 19 They need options other than a system. 20 And, finally, for those kids that are in the 21 system, the fifth recommendation is, as Jeremy said, 22 we need transparency and we also need oversight. 23 It is appalling that it took the federal 24 government to come in and document the conditions on 25 Rikers. 1 Why was that not done at the state level? 2 Why did we need the U.S. Attorney to tell us 3 what was happening in our own state? 4 We need oversight; 5 We need transparency; 6 We need to know what is happening; 7 We need to be able to get kids out of abusive 8 situations; 9 And we need to create and fund something that 10 works, so that New York moves from being last in the 11 country to being the leader. 12 We deserve to be; but most importantly, that 13 our children need us to be. 14 They need us. 15 They count on your leadership, and we thank 16 you. 17 [Applause.] 18 ASSEMBLYWOMAN JAFFEE: I would just say, 19 having taught in a junior high school for seven, 20 eight, and nine, for over twenty years, and I've 21 watched the brain development and the changes, and 22 that's a very real issue that I think needs to be 23 acknowledged and discussed on a regular basis; 24 because they do change, and they do behave sometimes 25 in outrageous ways, given the instability of their 1 situations as well. 2 So, thank you for your testimony. 3 SENATOR CARLUCCI: Just a couple of 4 questions. 5 Now, is there a legislation that you support 6 that's currently out there right now, or does this 7 need to be created? 8 PAIGE PIERCE: The commission that Gabrielle 9 and I both talked about is -- the recommendations 10 are due at the end of this year, at the end of 11 December. 12 And the expectation is that there will be a 13 package of bills that will address those specific 14 recommendations. 15 SENATOR CARLUCCI: All right, great. 16 And then the other question, about, when we 17 talk about tracking and the transparency, and not to 18 get into the, you know, micro details, but what do 19 you envision? What type of tracking system? 20 DR. JEREMY KOHOMBAN: Senator, I think 21 because this is both controversial and requires us 22 recreating the wheel here, right, I mean, we haven't 23 done this well, I think we need person-centered 24 tracking. 25 We have a group that we'll begin with. 1 You know, ideally, legislation will pass. 2 We'll have an identified group of young 3 people that we start working with across 4 New York State. 5 It's not a large group, so we can begin to 6 track these children to say, you know: What did we 7 do? Did it work; did it not? What were the 8 recidivism rates? 9 The current system doesn't have 10 person-centered tracking, so children could move 11 from one system to the next and completely 12 disappear, and we never know whether we are spending 13 money wisely. 14 So we need person-centered tracking, at least 15 for the first [unintelligible] and the second 16 [unintelligible]. 17 SENATOR CARLUCCI: Okay, so no matter what 18 agency they're in, we can follow them from agency to 19 agency? 20 DR. JEREMY KOHOMBAN: I think it's a group 21 that's small enough that we can do this. 22 GABRIELLE HOROWITZ-PRISCO: And I would just 23 add to that, that tracking is certainly an 24 incredibly important component. And I think 25 person-centered tracking is a great solution. 1 Also, talking about oversight, that there 2 needs to be a single agency. 3 There are currently 11-plus agencies, 4 I believe, in New York State that have various 5 pieces of oversight over the prison system, over 6 young people in the system. 7 There is the justice center, which I sit on 8 the advisory council for, and is a tremendous step 9 forward. 10 However, the justice center does not cover 11 16- and 17-year-olds in the adult system, except for 12 in certain situations when they fall under the 13 protection of other agencies. 14 In addition, you know, there needs to be an 15 agency that has subpoena power; the ability to make 16 unannounced visits and inspections in prisons. 17 There are, and I'd be happy to share with 18 you, recommendations that the American Bar 19 Association has put out, as well as national 20 prison-monitoring experts, like Michele Deitch, have 21 put out, about what oversight should look like. 22 And I'd be more than happy to share those. 23 And there are very specific, concrete 24 recommendations that the ABA and other experts have 25 said, such as, an agency must have confidential 1 interviews with children, with families, and with 2 incarcerated people, about conditions. 3 They must have subpoena power. 4 They must have the ability to shut an agency 5 down. 6 If you have an oversight agency that can't 7 actually put the incarcerating body -- you know, 8 have any enforcement, or can't shut them down, there 9 often isn't any teeth to oversight. 10 So there needs to be an ability, when 11 children -- when the U.S. Attorney, again, documents 12 what we found on Rikers Island, what happens with 13 that? What is the response? 14 And who then has control over making sure 15 that those kind of problems don't occur? 16 And those problems are systemic. They're not 17 isolated to Rikers Island, although the 18 U.S. Attorney looked only there. 19 So we'd really consider -- urge you to look 20 at oversight mechanisms. 21 SENATOR CARLUCCI: And that leads me to my 22 next question: 23 Do you have a number of the amount of 16- and 24 17-year-olds that are currently in county jails or 25 state prisons, or that, you know, in a given time 1 are there? 2 GABRIELLE HOROWITZ-PRISCO: I will say the 3 numbers -- 4 SENATOR CARLUCCI: And is it more a 5 county-jail issue? state prison? 6 GABRIELLE HOROWITZ-PRISCO: Yeah, so the 7 numbers vary, depending on how you count. 8 What was put forth by the governor's 9 Children's Cabinet about several administrations 10 ago, when this issue first began being investigated 11 at the state level, was close to 11,000 kids in 12 county jails, Rikers, or state prisons. 13 However, my understanding is, those numbers 14 looked at kids who spent, including, like small 15 periods of time. Like, if they were detained for a 16 couple of days, which can still be devastating. 17 And as Paige said, kids are often raped in 18 their first 48 hours in a facility. 19 But just to say that number is high, when you 20 look at kids who are in jails and prisons for a 21 short period of time, or, who, in their sentence, 22 are sentenced to time served, which means they're 23 sentenced to time they've already spent while 24 awaiting trial, if you look at the number of kids 25 who are sentenced to jail and prison, then the 1 number drops significantly. 2 So sort of where the number is, and where you 3 can get a snapshot, depends on how you measure, and 4 whether you're looking at, you know, Rikers, DOCS, 5 or the county jails. 6 But we can correspond offline and I can get 7 you some of the different breakdowns, because they 8 do change depending on what you're trying to 9 measure. 10 SENATOR CARLUCCI: Right, okay. 11 And when you talk about solitary confinement, 12 is it the case -- I know, you know, the correctional 13 officers are working with the guidelines that 14 they're given. 15 And is it a matter of segregation? Or are we 16 talking about just absolute solitary confinement? 17 Is there a difference, or -- to segregate the 18 16-year-olds from the adult population in these 19 prisons or jails? 20 GABRIELLE HOROWITZ-PRISCO: It's a great 21 question. 22 So, the Prison Rape Elimination Act (PREA) 23 says that localities must make all efforts not to 24 use solitary confinement as a means of separating 25 16- and 17-year-olds. 1 So New York State, which has indicated it 2 will become PREA-compliant, is, under PREA, not 3 supposed to be using solitary confinement as a way 4 to keep 16- and 17-year-olds segregated or safe. 5 My understanding is that, at least when I'm 6 talking about solitary confinement, and, like, some 7 of the statistics that we have about the number of 8 kids who are in solitary in DOCS, the state system, 9 or in Riker's, or in county jail, those are kids who 10 are generally there for disciplinary confinement, 11 what's called "punitive segregation," or 12 "disciplinary confinement," which is they're there 13 for some kind of alleged infraction. 14 It is important to know, however, that those 15 infractions in the culture of a jail or prison can 16 be incredibly minor. 17 We have many documented cases, and there have 18 been reports done by the American Civil Liberties 19 Union and Human Rights Watch and other 20 organizations, documenting that kids who go to 21 solitary confinement, and adults, it can be for very 22 minor things, such as, you know, maybe speaking back 23 to a corrections officer. Again, which can be part 24 of the adolescent brain. 25 I've heard firsthand testimony from people 1 who went to solitary, adults, for things like having 2 vitamins, which aren't allowed in the system. For 3 having too many legal materials. 4 I've heard a man testify personally, who was 5 put in solitary because he had too many legal 6 materials in his cell beyond what was allowed. 7 So just to say, even when you hear 8 "disciplinary confinement," it doesn't mean -- and 9 we would say, no matter what a person has done, they 10 should never be in that position, in solitary. But 11 it's important to drill down and say "disciplinary" 12 means something very different in the context of a 13 jail or prison. 14 PAIGE PIERCE: Well, and, also, under PREA, 15 the -- you know, in order to be PREA-compliant, 16 jails and prisons are not supposed to have young 17 people, minors, with adults. 18 The only way to do that is solitary 19 confinement. Otherwise -- you know, you've got to 20 lock up somebody. You've got to, like, separate 21 them somehow. 22 And most of our jails and prisons in the 23 state are not PREA-compliant, just by the physical 24 structure, and the fact that we have 16- and 25 17-year-old physically there. 1 And one way to get PREA-compliant on that 2 part of PREA is to segregate them in solitary 3 confinement. But then you're violating other parts 4 of PREA. 5 AVRILL LINDSAY DENNIS: The other piece, just 6 to add to that, is if you take into consideration 7 the adolescents who truly have the mental-health 8 issues, and the behaviors that are driven out of the 9 untreated mental-health issues, leading to some of 10 the examples of behaviors, and the minor infractions 11 that would lead them to solitary confinement. 12 So instead of accessing treatment, or 13 accessing either known or unknown assessments in 14 treatment for the youth, they're then placed in 15 solitary versus treatment or assessment. 16 SENATOR CARLUCCI: Great. 17 Well, thank you so much. 18 PAIGE PIERCE: Senator, can I just add one 19 more thing, about, when you talk about oversight and 20 tracking, one of the things that we know about young 21 people who are in prison now, at the age of 22 16 or 17, is that they didn't -- that wasn't 23 their -- the first time that anybody ever heard of 24 this kid. 25 You know, they were, you know, suspended from 1 kindergarten; and, preschool, kicked out of 2 preschools. 3 You know? 4 So we're talking about kids who -- if -- but 5 that was a different system. 6 So, tracking that kid into a different system 7 is often not -- doesn't happen, and so they just go 8 from system to system. 9 I've had family members tell me: We have 10 four different case managers that come to our house, 11 from different systems. None of them even know the 12 other exists. 13 You know? 14 Families are the case managers for the case 15 managers. 16 And, our system needs to have a better sense 17 of where -- you know, who are these kids? 18 There's the ACES study (the Adverse Childhood 19 Experiences Study) that shows, you know, the 20 trajectory of kids who have had high scores on the 21 ACES. And they -- we can -- we know these kids, and 22 if we track them and help them, and provide the 23 kinds of supports to their family and to the 24 community on the front end, we wouldn't even have to 25 talk about how many 16- and 17-year-olds are in 1 adult prison. 2 SENATOR CARLUCCI: Great. 3 Well, thank you so much. Appreciate it. 4 Thank you. 5 [Applause.] 6 SENATOR CARLUCCI: Next we'll hear from 7 Toni Lasicki, who is the executive director at 8 The Association for Community Living. 9 TONI LASICKI: Good afternoon, Senator. 10 Well, that's a very tough act to follow, 11 I think. 12 As you know, ACL represents 120 nonprofit 13 community-based mental-health agencies across the 14 state that provide an array of mental-health 15 services, including over 20,000 housing units with a 16 rehabilitation focus. 17 Our members serve primarily consumers who are 18 affected by severe and persistent psychiatric 19 disabilities, many of whom have co-occurring 20 serious -- medical conditions, substance addictions, 21 and developmental disabilities. 22 Virtually all of their clients are eligible 23 for Medicaid. 24 Our members' agencies are primarily funded 25 and regulated by the Office of Mental Health, and a 1 substantial portion of their revenue is from the 2 Medicaid program. 3 Thank you for accepting my testimony. 4 I just want to -- just to put a context, I am 5 going to focus just on the RCE plans and Olmsted, as 6 was in the title of the request. 7 So, as you know, there are many other issues 8 that we can talk about, and I'm sure we'll have an 9 opportunity to do that in the coming months, but 10 I am going to focus on those two areas. 11 Although it's my understanding that the 12 regional centers of excellence plans, as originally 13 considered, are no longer being considered by the 14 State. 15 The State's field offices, along with 16 communities around the state psychiatric centers, 17 are planning for the use of funds, save from bed 18 closures, reinvesting those funds into the local -- 19 into communities. 20 We have heard from providers around the state 21 that the services that are being funded in each 22 community do closely follow the recommendations of 23 the original RCE committees in each region, with 24 additional input from providers, county directors, 25 families, and consumers. 1 That said, providers report that there are 2 varying levels of participation from community 3 members and providers in the different counties, 4 resulting in a few that are unhappy with the 5 process. 6 Concerns were raised mostly in areas where 7 services and/or housing slots were awarded without 8 an RFP process. 9 However, most are satisfied with the process 10 and the services that will be funded. 11 The services are too varied to list here, but 12 an example -- but examples include: 13 supported-housing slots; enriched services for 14 people in housing; mobile crisis; warm-lines; 15 hotlines; self-help; outreach; crisis-intervention 16 programs to provide peer engagement and wraparound 17 services; children's crisis intervention and mobile 18 integration teams; ACT teams; child and family 19 intensive case-management slots -- just to add to 20 Paige's *, all those case managers that are running 21 around -- mobile residential support teams; hospital 22 return and respite centers; and recovery centers; 23 and more. 24 So we realize that the plans to downsize the 25 hospitals will include ways to preserve state jobs, 1 although we're not quite sure what that will look 2 like. 3 We believe that this is a reasonable goal and 4 planners should strive to reach it. 5 However, it's a well-documented fact that the 6 same service provided by the State is both much more 7 expensive and less flexible than when provided by 8 non-profits with no loss of quality. 9 We're also concerned that the State will 10 expect non-profits to allow State workers to work in 11 non-profit settings, side by side, in the same jobs 12 with non-profit staff who make one-half-or-so less 13 than the State staff. 14 That would create an inordinate amount of 15 discontent among our workforce, and is really not 16 recommended. 17 However, we do have a need for specific 18 services that State staff might be able to provide 19 where there are few or no equivalents. Those 20 include mobile-nurse services, building maintenance, 21 security, grounds maintenance, mobile psychiatric 22 staff, and I'm sure there are others. 23 In addition, we have concerns about the 24 sustainability of new services. 25 The current community-based system has been 1 starved of funding increases so much so that 2 programs have experienced up to 43 percent in cuts 3 due to inflation. 4 Creating new services that will also be 5 similarly starved is not a recipe for a robust 6 system of care that can take the place of inpatient 7 settings. 8 No matter what happens with reinvestment in 9 communities, the existing system of care and the new 10 must be sustained by providing regular, consistent 11 cost-of-living increases to the entire budgets of 12 these programs. 13 ACL is strongly opposed to targeted increases 14 that go only to certain workers or to portions of 15 providers' budgets. 16 Providers must able to manage their finances 17 in as flexible a manner as possible. 18 In addition, as we move to managed care, we 19 need a much more robust administration. 20 Ours have been weakened and reduced, as 21 providers have moved money to direct care and to 22 programs to keep them afloat. 23 We now need to replenish those areas that 24 have been neglected. 25 Many of my members report that their 1 administration -- the administrative share of their 2 budgets is now down to 10 percent. 3 10 percent is extremely low to manage 4 24/7 highly regulated programs, to move into managed 5 care, and to continue to keep up with all of the 6 burdens that the State puts on them. 7 So just on Olmsted, we will be releasing a 8 white paper in the next few days on Olmsted and 9 OMH housing. 10 I'll excerpt it here, but please allow me to 11 send that along as soon as it's done, probably by 12 Friday. 13 New York State's Office of Mental Health has 14 successfully integrated tens of thousands of persons 15 with serious and persistent psychiatric illnesses 16 into the community over the last 35 years, but this 17 next statistic is telling: 18 New York once had 24 adult state institutions 19 that served 93,000 people. 20 It now has 17 adult state institutions that 21 serve 2800 people. 22 So we went from 93,000 in 24 facilities, to 23 2800 in 17 facilities, using approximately 24 $2 billion of the state's mental-health budget. All 25 hospitalizations account for $3.3 billion. 1 As the hospital population decreases, without 2 a proportional decrease in the number of 3 institutions, the cost per person goes up. 4 It is now at an all-time high. 5 By my calculations, it's approaching 6 $700,000 per year per person in a state facility. 7 In contrast, the entire local system, all 8 programs, not just housing, is funded at only 9 $1.3 billion for 600,000 people; or approximately 10 $2100 per person per year. 11 Although housing has been proven to keep 12 people out of hospitals and institutions, resources 13 have been diminishing in community settings for 14 years. 15 For example, housing programs have lost 20 to 16 40 percent in funding to inflation over the past 17 20 years at the same time that the clients' needs 18 become much more challenging. 19 That said, the Supreme Court did observe that 20 the ADA does not compel states to phase out 21 institutions. That it does not mean to drive 22 patients into community settings that are 23 inappropriate. That some patients may need to 24 revisit an institution from time to time, and that 25 some patients may never be able to actually leave an 1 institution. 2 It also opined that the State did not have to 3 fundamentally alter their programs or services to 4 operationalize the integration mandate of the ADA. 5 However, I believe that if the Supreme Court 6 were to revisit Olmsted today, it would be shocked 7 that so much of a state's resources go to so few 8 people at the expense of the majority, when there is 9 a way to change that; that is, to consolidate 10 hospitals and move that money to where the clients 11 are in the community. 12 One can only wonder what the Supreme Court 13 would think of New York today; in particular, what 14 Justice Kennedy would think. 15 Justice Kennedy, in his concurring opinion, 16 cautioned, that if the principle of liability 17 announced by the Court today is not applied with 18 caution and circumspection, states may be pressured 19 into attempting compliance on the cheap, placing 20 marginal patients into integrated settings devoid of 21 the services and attention necessary for their 22 condition. 23 I believe that this is happening today 24 because of the misguided attempts to save every 25 state hospital from extinction, requiring massive 1 amounts of money to maintain a handful of people. 2 As evidenced, look at what the State is 3 willing to pay for a housing slot for a person 4 coming straight out of a state facility. 5 In the central region, that's $7600 per year. 6 So somebody comes from a $700,000 bed in a 7 state psychiatric facility, and is expected to be 8 served by a provider in the community for $7600 a 9 year, and that includes rent. 10 New York has the highest cost of living in 11 country, so that the OMH publicly-funded housing 12 continuum for people with serious mental illnesses 13 in New York is critical and necessary, and, it needs 14 to expand. 15 Few have enough income to be 16 housing-independent. 17 A modest apartment in New York costs, on 18 average, 133 percent of the SSI rate that clients 19 receive. 20 Employment may often be a goal for the vast 21 majority in the system; however, 85 percent of 22 persons with mental-health diagnoses are unemployed. 23 The subset that needs supportive housing are 24 the least likely of those 85 percent to obtain 25 employment that will pay them in the amounts needed 1 to be housing-independent in New York State. 2 We simply cannot continue to spend $2 billion 3 on 2800 people if we are going to be responsible 4 stewards of state resources and meet our obligations 5 to the most ill among us. 6 The State Office of Mental Health has funded 7 a variety of program and housing types in the 8 community over the years. 9 However, we are hearing that some types of 10 facilities may be in jeopardy due to the way in 11 which the Department of Justice interprets Olmsted. 12 We believe that the New York State Office of 13 Mental Health's effort, however, to 14 deinstitutionalize patients from the state hospitals 15 and other settings have largely been within the 16 parameters of the ADA, as interpreted by the 17 Supreme Court's decision in Olmsted. 18 That well-known decision sought to place 19 two women with co-occurring developmental 20 disabilities and psychiatric illnesses from state 21 institutions into small group homes in the 22 community. 23 In interpreting the Americans with 24 Disabilities Act integration mandate, and in 25 answering the central question posed in the lawsuit, 1 whether the proscription of discrimination may 2 require placement of persons with mental 3 disabilities in community settings rather than 4 institutions, the Olmsted Court held that it did in 5 the following circumstances: 6 When the state's treatment professionals have 7 determined that community placement is appropriate; 8 When a transfer from institutional care to a 9 less-restrictive setting is not opposed by the 10 individual; 11 When the placement can be reasonably 12 accommodated, taking into account the resources 13 available to the state and the needs of others with 14 mental disabilities. 15 All of that leads one to believe that a 16 continuum of services for people with varying needs 17 is appropriate. 18 After all, if the Court recognizes the need 19 for institutions, it is reasonable to think that the 20 Court would approve a step-down setting from 21 institutions, including highly-structured community 22 settings that are close to or integrated into 23 neighborhoods. 24 It would also be surprising for the Court to 25 object to even a lifetime community placement in a 1 highly-structured community residence integrated 2 into a neighborhood as an alternative for those that 3 would otherwise need to spend their entire lives in 4 a segregated institution. 5 For some, these are the only choices; or, the 6 choices that many would make even if the state had 7 unlimited resources. 8 So ACL encourages New York to continue to 9 expand its housing system and to sustain each model 10 in the continuum. 11 We also strongly urge New York State to 12 continue to make available capital dollars directly 13 to the State Office of Mental Health so that it can 14 continue to make available a large number of housing 15 units to people with serious and persistent 16 psychiatric illnesses. 17 If all capital dollars were to go through one 18 central housing office, which seems to be a 19 possibility under the Governor, developers might be 20 tempted to reject people with serious psychiatric 21 disabilities who are often the most difficult to 22 serve. However, these are the people who are some 23 of the highest users of Medicaid, and housing has 24 been proven to reduce those costs. 25 We can provide any additional information 1 that you might need, and thank you for the 2 opportunity. 3 SENATOR CARLUCCI: Great. 4 Thank you, Toni. 5 Appreciate it. 6 TONI LASICKI: Thank you. 7 [Applause.] 8 SENATOR CARLUCCI: Our next speaker is 9 Mary Grace Ferone. She's the program manager at the 10 Legal Services of the Hudson Valley. 11 MARY GRACE FERONE: My name is 12 Mary Grace Ferone. I'm the program manager for 13 disability and public benefits at Legal Services of 14 the Hudson Valley. 15 Thank you for giving me the opportunity to 16 speak with you today. 17 I come here today wearing three very 18 different hats. 19 The first is as an attorney who, for over 20 15 years at Legal Services of the Hudson Valley, has 21 represented individuals with serious and persistent 22 mental illness in matters that help them maintain 23 and secure the basic necessities of life. 24 My second hat is as the board chair of 25 CHOICE, a mental-health peer-advocacy and 1 case-management organization that works daily to 2 assist persons with mental illness, and navigate 3 bureaucracies, fight against the stigma of mental 4 illness, and to live life to the fullest. 5 Lastly, I come as a sister who, 32 years ago, 6 lost her 20-year-old brother to suicide. 7 Knowing what I know about services to persons 8 with mental illness; particularly, what the services 9 were back in the '80s, there weren't many. 10 Hospitalizations and day programs seemed to be the 11 only answer for my brother. 12 While I acknowledge that New York State, in 13 particular, has come a long way in providing 14 services to individuals with mental illness, much 15 still needs to be done to help people live healthy, 16 alive, and living in the community. 17 I'd like to speak with you about a service 18 I know makes a difference in the lives of persons 19 with mental illness; and that is civil legal 20 services. 21 Legal Services of the Hudson Valley is the 22 premier provider of comprehensive legal services to 23 low-income individuals in the Hudson Valley. 24 We have eight offices, including 25 Spring Valley, White Plains, Yonkers, Mount Vernon, 1 Peekskill, Poughkeepsie, Newburgh, and Kingston. 2 We strive to serve as many eligible 3 individuals and service as many persons with various 4 disabilities, but the need outweighs our 5 capabilities. 6 Individuals who suffer from mental illness, 7 like most other populations who are marginalized by 8 society, regularly face legal battles to maintain 9 the basic necessities of life. 10 Often, these individuals struggle to maintain 11 their housing, secure benefits to which they are 12 entitled, struggle to keep their families together, 13 and struggle to live with dignity and the civil 14 rights to which they are entitled. 15 The struggle to maintain the basic 16 necessities of life can be overwhelming to a person 17 struggling with mental illness. 18 Legal problems cause increased stressors that 19 have harsh effects. 20 Mental health can deteriorate, cause 21 hospitalizations. 22 One can become homeless. 23 One could lose their income and live without 24 a support network. 25 Since the early 1990s, Legal Services of the 1 Hudson Valley has been providing free legal services 2 to Westchester residents, only, who suffer from 3 severe and persistent mental illness, as a result of 4 a grant from the New York State Department of 5 Mental Health. 6 This grant, known as "Community Support 7 Services," should be a model replicated across the 8 Hudson Valley and New York State. 9 The funding provides for two full-time 10 attorneys to provide civil legal services to the 11 SPMI community. 12 Of over the 350 cases handled by the project 13 last year, the vast majority involved providing for 14 or maintaining the necessities of life. 15 Evictions were prevented. 16 Benefits were obtained. 17 Parents were reunited with their children. 18 The experienced attorneys who work on this 19 grant, and in conjunction with medical case managers 20 and care coordinators, to ensure client services and 21 avoid crises. 22 Our attorneys also provide training on 23 substantive legal issues relevant to the 24 mental-health consumer community and to 25 social-service workers. 1 I have worked in civil legal services for 2 over 20 years, and have provided services to this 3 community for the majority of that time. 4 It has been my experience that services are 5 the key to keeping people healthy and free from 6 hospitalizations. 7 More services are needed to create networks 8 and referral systems so that consumers get to 9 professionals before a crisis becomes a problem -- a 10 problem becomes a crisis. 11 I'm sorry. 12 Prior to the introduction of services, 13 homelessness, loss of income or benefits, unstable 14 family relationships, would be the norm. 15 Increased legal services, combined with 16 increased availability of case management, is a key 17 component for the success in recovery of persons 18 with mental illness. 19 Without the basic necessities of life being 20 taken care of, the person can focus on being well. 21 Thank you for your time. 22 SENATOR CARLUCCI: Thank you, Mary Grace. 23 Our next panel is regarding eating disorders; 24 and we have Neil Weiss, who's a parent-advocate, and 25 we have Doug Bunnell, who is the national clinical 1 development officer and clinical director at 2 Monte Nido. 3 NEILL WEISS: Thank you, Senator. 4 Nice to see you, Assemblywoman Jaffee. 5 My perspective on this is as a parent. 6 You obviously see that I don't have any 7 notes, so I'm going to be speaking from the heart. 8 A lot of the issues that I've heard today are 9 similar, and yet different, for someone who has an 10 eating disorder. 11 My daughter was diagnosed, quite by chance, 12 because one of her friends at school, when she was 13 at South High School, went to a person that was a 14 counselor, and actually went to our daughter and 15 said: I think that you have an eating disorder. 16 You actually have 24 hours to speak with your 17 parents because, within those 24 hours, I'm then 18 going to be calling your parents." 19 It was very lucky that we happened to have 20 known personally this counselor at the school. 21 What we didn't know at that time, we didn't 22 know the hell, and all the issues, that were going 23 to be coming along with it. 24 One of the things that we discovered was 25 that, in the New York tri-state area, there are very 1 few eating-disorder specialist units, not only on a 2 private insurance, but also through Medicaid. 3 Medicaid has units that do look at eating 4 disorders, but they do specialize in others areas -- 5 alcoholism; drug use; violence, whether it's 6 domestic violence or whether it's sexual violence -- 7 and they always tag on the eating disorder with 8 that. 9 One thing that I've learned, you cannot place 10 a student, a young lady or a young man, in a unit 11 that has other people affected by other illnesses, 12 because, as I call them, "'Ed,' the monster," will 13 rear its ugly head and will soak up some of the 14 other issues because it just loves and it thrives on 15 making an illness worse, stronger. 16 Now, one of the things that happened to me 17 is, I had to actually leave my job, because my 18 daughter got so ill that my wife, actually, 19 previously, when she was younger, she had an eating 20 disorder. 21 Her eating disorder came out with a vicious 22 cycle, that one was feeding off of the other. 23 When I lost my position, I lost the 24 insurance. I had to go onto Medicaid. 25 And, again, this is where the system reared 1 its head in my face, that I actually went to anybody 2 that would listen. That nobody has able to direct 3 me to any different institution or facility that 4 actually looked after eating disorders. 5 Luckily, the Jewish Family Services had one 6 person that joined their staff that was willing to 7 look after our daughter on one hour per week. 8 Now, the symptoms can actually come out 9 earlier in life. 10 When my daughter was placed into one of the 11 facilities, when we did have insurance, the only 12 two facilities that would take her, that were local, 13 one was in Philadelphia, one was in Boston. 14 That was the closest that we could have gone. 15 Insurance doesn't pay for the excess gas, for 16 tolls...for everything else that goes along 17 accordingly with looking after someone that has an 18 eating disorder. 19 But the symptoms, and all the classic signs 20 of someone with an eating disorder, these are young 21 men and women that are highly intelligent. They 22 have a level of OCD with it. They will actually 23 hide the illness from those that are closest to 24 them. 25 One of the things that I would like to put 1 forward is, there is a program that I -- 2 And, Senator, you know that I lived over in 3 Europe for over 25 years. 4 -- they actually, and what I'm hearing from 5 many different people here today, is early 6 detection, early prevention, and early intervention 7 actually works very well, over in England 8 particularly. 9 The money that is invested early on keeps the 10 cost at a longer figure, going down the road, from 11 escalating and getting higher. And the earlier that 12 you can actually attain and get a hold of the 13 illness is something that is so important. 14 At one of the facilities that I knew -- 15 Bless you. 16 -- one of the facilities my daughter was at, 17 they had young ladies there as young as 10, 11, and 18 12. And they also had women there that didn't get 19 diagnosed early, but were in their 40s, 50s, and 20 60s. 21 There was one woman that my daughter got very 22 friendly with, that we are still friendly with as a 23 family. She is a consultant gynecologist from a 24 woman's hospital in Boston. 25 She has an eating disorder that keeps on 1 coming back, and she is the first one to admit, it 2 wasn't diagnosed and worked on earlier. 3 Not only is she a gynecologist, but she's 4 also pregnant, with an eating disorder. 5 And this is a system, whereby, if not caught 6 early enough in the school; we got a lot of 7 information regarding drug abuse, regarding 8 alcoholism, but not one piece of information came 9 from the school about eating disorders. 10 And I can tell you now, when I found out 11 early on about eating disorders, my whole concept of 12 what it was, was nothing like it actually really is. 13 You do not always have young ladies, young 14 men, looking like they're famished or that they're 15 starving. 16 They eat when they need to before they start 17 collapsing. 18 And one of the things that an eating disorder 19 will do, it will actually affect many organs, 20 physically, in the body a lot faster than a lot of 21 other illnesses. 22 They always have heart checks. 23 Potassium levels are lower. 24 You will find that many of these young 25 children and young adults and young people are dying 1 from heart conditions, a heart attack. 2 Now, one of things that I know personally is 3 that this is in the shadows, but it really isn't. 4 I could take you to the lobby of 5 Spring Valley High School, of South High School, of 6 North High School, and I could stand on one step, 7 and I could almost point out some of the people that 8 do have eating disorders that are not being caught 9 by the staff. 10 And a little training by the staff will go a 11 long way. That's money that could be well spent to 12 prevent longer-term issues. 13 And these, again, are highly intelligent 14 people that will actually have a very big effect on 15 society. 16 So, really, in conclusion, I don't really 17 have a lot to say; just that, my family is, 18 literally, tearing apart because of this. 19 My wife and I are at odd's ends. 20 My daughter and I are constantly fighting, so 21 much so, there was one time that we had to call the 22 police, because my daughter threatened to harm 23 herself, and she was placed in an isolation unit at 24 Nyack Hospital. 25 She was there for 72 hours, because we didn't 1 have private insurance at that time. Medicaid was 2 not able to send any psychiatrist to speak to my 3 daughter until three days later. 4 Now, frankly, I know that my daughter 5 wouldn't have harmed herself dramatically; but, 6 again, I don't know that, because I don't know 7 what's going on in her mind. 8 It's only lately that she's really starting 9 to come out of her shell. 10 And I will tell you this: 11 The gentleman sitting next to me is from an 12 organization called Monte Nido. 13 They, literally, saved my daughter's life 14 when she was in the facility up in Boston. 15 And, again, we had to travel almost every 16 week, and at some point, every other week, to go up 17 and visit her, because this is a family issue that 18 needs family involvement, very much like almost all 19 these other illnesses that I'm hearing today. 20 And there's no support from anyone else, 21 other than the family. 22 And more importantly, there is nothing in 23 this immediate area that we can actually turn to, 24 other than day treatment or outpatient treatment. 25 So, that's what I have to say. 1 And I really would like to turn it over to 2 Dr. Bunnell. 3 DR. DOUG BUNNELL: Thank you. 4 Thank you, Neil. 5 And thank you both for providing leadership 6 on this issue and bringing some light to eating 7 disorders; and mental-health issues, in general. 8 Mr. Weiss's story is one I've heard over 9 and over again in my 30 years in this field, both as 10 a clinician, and as a -- I was actually past board 11 chair of the National Eating Disorder Association, 12 really targeting these sorts of issues. 13 So the good news in New York State is that 14 New York State's actually been at the leadership of 15 trying to craft legislation and systems to address 16 some of these issues. 17 The bad news is, that they remain largely 18 underfunded, and we need to find ways to actually 19 bring life to these organizations. 20 So, I want to sort of start with the good 21 news, and sort of close with the needs. 22 Let me just give you a little context; again, 23 the personal face of the story. 24 This is a story that many families go 25 through. Like, they don't know about eating 1 disorders until they have to know about eating 2 disorders, and then they are trying to navigate 3 their way through a system that is complicated 4 through an illness that is multi-dimensional, often 5 requires multiple care providers, often has a 6 prolonged and protracted course. 7 Most people do get better, but it often takes 8 a long time, and it can wreak havoc, not just on the 9 individual, but on families as well. 10 In the United States, approximately 11 30 million people suffer from eating disorders. 12 Those are from diagnoseable disorders, such 13 as anorexia nervosa, bulimia nervosa, and, now, 14 binge-eating disorder. 15 If you sort of extend the labels a little 16 bit, or the criteria a little bit, we're looking at 17 a sizable proportion of people; upwards of 18 30 percent of high school girls, and 16 percent of 19 high school boys, who endorse symptoms of disordered 20 eating that may not reach the threshold of formal 21 diagnosis, but, are troublesome. 22 So, we're talking about laxative use, 23 self-induced vomiting, dietary restriction, 24 overexercise. 25 With boys, we're looking at issues like 1 growth-hormone abuse, steroid abuse, things like 2 that, to build their bodies, because of their 3 anxiety about bodies. 4 So independent of whether they have an actual 5 formal diagnosis, there's a tremendous amount of 6 pain, distress, dysfunction, and impairment 7 associated with disordered eating that we need to be 8 mindful of, as well. 9 Eating disorders have the highest mortality 10 rate of any psychiatric illness. It's a little 11 known fact outside of the eating-disorders world. 12 Most people still perceive eating disorders as 13 relatively benign diagnoses. 14 These are serious mental illnesses that 15 really do great damage to the psyche, the body, as 16 Neil mentioned. 17 Among the 15-to-24-year-old age range, you 18 know, people in that range with an eating disorder 19 have a 12 times higher risk of premature death than 20 their non-eating-disorder counterparts. 21 So these are serious illnesses. 22 Actually there's some evidence -- I can get 23 you the citations -- that the greatest amount of 24 health-care dollars spent on behavioral issues in 25 adolescents is around eating disorders. 1 If you talk to the insurance companies -- and 2 I'll come back to that in a moment -- the insurance 3 companies, their greatest distress is around the 4 amount of money they have to pay to provide care for 5 this population. It's actually the number-one 6 behavioral-health cost for the insurance companies. 7 So we need to do a better job of, as you 8 said, intervening early, preventing some of the 9 downstream more -- complications, that include 10 things like bone loss and brain shrinkage and 11 infertility and depression and anxiety. 12 There really is tremendous amount of damage 13 that cascades out of an eating disorder if it's left 14 undiagnosed, untreated. 15 It is actually anorexia nervosa, which is 16 actually the least-common eating disorder. It's 17 sort of the face of eating disorders, so the face is 18 usually a young woman who is starving herself. 19 That woman is -- and the misconception is 20 usually Caucasian and upper-middle class. 21 Those are misnomers, misperceptions. 22 These are illnesses that affect all ethnic 23 groups, all religious groups. 24 You know, as I mentioned earlier, they affect 25 both genders, with some differences, but we know 1 boys are under-diagnosed, under-attended to, in 2 terms of these disorders. 3 And just to shift to the current snapshot of 4 what's going on in New York: 5 Until -- well, up until tomorrow, OMH 6 willing, we will open up a residential treatment 7 program in New York, in Irvington. 8 It will be the -- only the second residential 9 treatment program in New York State history for 10 people with eating disorders. 11 The other one was in the Elmira region, and 12 closed down several years ago. 13 So we are -- we sort of worked through the 14 process of getting that program open. It's been 15 complicated and challenging, but, I think we've 16 heard from -- over and over again, from families and 17 providers in the area, there's is a great need here. 18 The story that Neil describes of families 19 needing to go out of state for treatment is 20 gut-wrenching. 21 Can you imagine having -- you know, being 22 newly diagnosed, and having to say to a 15-, 23 16-year-old, let's say, daughter, you're now told 24 that, for her to get comprehensive care, she's going 25 to need to go to Philadelphia. Often even go to the 1 west coast. There are programs in Utah, of all 2 places, that do this. 3 But imagine the distress that causes the 4 family. 5 Beyond that, we know, too, that the most 6 effective treatments for people with eating 7 disorders involve family. And we have to find ways 8 to facilitate that. 9 So to be able to provide treatment in 10 New York State for New York State residents is 11 absolutely critical. It improves treatment 12 outcomes, and will help to deter some of those 13 downstream costs. 14 If we're going to do that, it's critical that 15 we build a network of treatment providers and 16 treatment resources across the state. 17 The Comprehensive Care Centers for Eating 18 Disorder -- the CCCED, which is the last time I'll 19 say that, because I can never say it without 20 stumbling -- but, the Comprehensive Care Centers 21 have centers in the Rochester area, the Albany area, 22 and downstate. 23 It's essential that we continue to try to 24 link those centers together, and link treatment 25 providers in between those regions with those 1 providers. That takes resources. 2 This CCCED mandate, as I mentioned, they do 3 exist, and they are, really, sort of models for what 4 other states should be doing, but they remain 5 underfunded. 6 Most eating-disorder patients in New York 7 struggle to find a single point of access for care, 8 so that the normative experience for people or 9 families with an eating disorder is, they go, Oh, my 10 God, where do I go? 11 No sort of sense that it's, you know, a very 12 complicated system. 13 There are organizations, like National Eating 14 Disorders Association, that can get people pointed 15 in the right direction. But, we need to do a better 16 job in New York State of directing people to care. 17 The bill also established support in coaching 18 and case-management resources, which are just 19 essential. 20 Again, if we can help people find their way 21 to treatment, provide community supports, we can 22 actually avoid or deter inpatient admissions, which 23 are costly and problematic, obviously, for families. 24 So I think that one of the developments in 25 the field over the past several years has been 1 extending this continuum of care, to look at 2 providing outpatient treatments, supports, that help 3 patients and families stay in their homes, stay in 4 their communities. 5 Residential care is one piece of that 6 continuum, but, the critical part of the treatment 7 actually takes part in recovery. It takes part 8 after people step out of 24/7 care and need to 9 reenter the community. 10 And the dropoff from a 24/7 environment to 11 once-a-week outpatient therapy is precipitous, and 12 many patients struggle in that shift. 13 So we're looking to be creative at trying to 14 provide resources and support in that, that link, if 15 you will. 16 Again, I really want to stress, trying to 17 build and facilitate residential care here in 18 New York will allow families to stay here in 19 New York, and really benefit, you know, patients and 20 their families. 21 I also want to just briefly highlight a 22 success. 23 Assemblywoman Gunther and Senator Hannon were 24 part of a bill that mandates now public awareness 25 and education for eating disorders, that's so 1 essential. 2 The issue of stigma in all mental illness, 3 but certainly with eating disorders, is just 4 profound. 5 There's such shame, and sort of misconception 6 associated with these disorders, that whatever we 7 can do to educate is going to be helpful. 8 So, I just conclude by saying: 9 We know that providing a full continuum of 10 care with easy access, and referral across that 11 continuum, will help patients and families. 12 We can save lives, we can save resources, and 13 at the same time, facilitating that sort of fully 14 functional comprehensive-care model, we really have 15 sort of the skeleton in place to do that, but, can 16 we bring resources to really bring that to life? 17 Thank you. 18 NEILL WEISS: I would like to add one thing 19 on this. 20 One of the -- as Doug mentioned, one of the 21 areas that New York really does have that's well, is 22 we have the National Eating Disorder Association 23 located in New York, in Manhattan. 24 They're a phenomenal resource, but that's all 25 they are, they are a resource. 1 What I'm advocating is, an education early 2 on, that, we're educating the educators so that they 3 then can go out into their field. And we're 4 speaking -- I'm speaking of the teachers, of 5 principals, because they are the ones that see the 6 students early on, and they are the ones that see 7 the changes more than the family does. 8 And you have an option, and you have an 9 opportunity here, to actually make use of the 10 facilities in the New York area, and it all doesn't 11 have to come from public money. 12 There are numerous amount of companies that 13 I have actually approached, with regards to eating 14 disorders, that are more than willing to actually 15 get on board, and help lose and help get away from 16 the stigma that's in this, and raise the awareness. 17 So this could actually be a very good 18 opportunity for yourselves to actually point the way 19 to actually use not only public and private funds, 20 but to really use this knowledge that we have in 21 this area, and get it out there to the right people. 22 Thank you. 23 Do you have any questions? 24 SENATOR CARLUCCI: Just one question about 25 the Monte Nido, and, you said you're opening 1 tomorrow? 2 DR. DOUG BUNNELL: We are awaiting formal 3 approval from the Office of Mental Health on that; 4 but, yes, some time in the near future we will open. 5 SENATOR CARLUCCI: And how many people will 6 you be able to -- 7 DR. DOUG BUNNELL: 14 beds for, at this 8 point, women, 18 years of age and above. 9 We hope to actually be sort of spinning off a 10 male program within the next year. 11 SENATOR CARLUCCI: And those 14 people that 12 will be taking advantage of those services, where 13 will the funding come from? 14 DR. DOUG BUNNELL: Mostly through their 15 private health insurance. 16 We will have a percent of, sort of, 17 non-revenue care that we provide as part of our -- 18 SENATOR CARLUCCI: Do you anticipate an issue 19 with Medicaid? 20 DR. DOUG BUNNELL: We have been working with 21 that issue, and how we're going to sort of manage 22 the Medicaid relationship. 23 It's complicated. 24 SENATOR CARLUCCI: Okay. 25 NEILL WEISS: Well, I just want to add one 1 thing. 2 My daughter, being that she is actually in 3 the New York unit, Monte Nido does have 4 scholarships, and they have given my daughter a 5 scholarship. 6 Again, I say that they saved her life, but 7 most importantly, this is a facility, these are 8 people, and it's not just Monte Nido, they do care. 9 And there are scholarships. 10 And Medicaid is -- as I know personally, it 11 is absolutely diabolical when you're trying to get a 12 hold of people. And, I hate to say it, sometimes to 13 them, it's a 9-to-5 job. But, more importantly, 14 they are constrained to what they are able to do. 15 SENATOR CARLUCCI: And just another question 16 for Dr. Bunnell. 17 The -- has your experience been that private 18 insurance is good in covering people with eating 19 disorders? 20 Because that's what it sounded like so far. 21 DR. DOUG BUNNELL: Uhm, it's important to 22 provide access to care based on people's insurance, 23 so I think it does pay for a level of care that 24 helps many people. 25 There are many people who struggle to 1 actually get comprehensive and fully effective care 2 based on their health-care insurance, and, ongoing 3 tensions. So many people, one of the issues we see, 4 is that people will be sort of pulled out of 5 treatment prematurely, based on sort of, you know, 6 pulling back with funding, and so forth. 7 You then sort of relapse, and, you know, 8 they're partially recovered, and then, sort of 9 relapse, and then actually need to spend more money 10 to go through another cycle of treatment. 11 SENATOR CARLUCCI: Because one of problems 12 we've seen on the work we've done with people with 13 addiction, particularly the rise in heroin addiction 14 that we see, is that we've had a real problem with 15 private insurance. 16 And it's been around, What is the definition 17 of "addiction"? And when do we meet that threshold 18 to have inpatient services? 19 So that's why I was wondering if you've come 20 across -- 21 DR. DOUG BUNNELL: No, I mean, it's a very 22 complicated issue, and I would be happy to talk 23 offline further about it. 24 But, one of the issues that comes up is the 25 point at which you -- or, how you define "recovery." 1 And one of the issues we run into, both in 2 the addictions world and, certainly, with eating 3 disorders, is that full symptom remission; meaning, 4 cessation of symptoms, like binge eating or purging 5 or starvation, would be one marker of recovery. 6 What we understand, for most people, is that 7 there's work that needs to go on beyond that. And, 8 often, that can be longer term sort of work. And, 9 insurers are reluctant. 10 I mean, if I'm in their shoes, I understand 11 their reluctance, but, they're reluctant to pay 12 beyond a certain threshold. 13 So we often have people sort of getting just 14 to that point, and then needing to be, you know, 15 drastically reduced in the level of intensity. And 16 that, actually, is where the relapses tend to occur. 17 NEILL WEISS: When my daughter was in both of 18 the different facilities, there were times that she 19 would -- we would be speaking on a regular basis if 20 we weren't visiting her, and she would actually come 21 and say to us: 22 "I've been given three more days from the 23 insurance company, and then they have to 24 reevaluate"; 25 "I've been given another two more days"; 1 Or "I've been given another week." 2 She would have her bags packed, until the 3 actual phone call with the eating-disorder facility 4 and with the insurance company. And she would not 5 know, even that day, if that was going to be her 6 last day at the facility. 7 So, when you speak of the addictions with 8 heroin, it's very similar. 9 They have a different definition than what's 10 out there, than what is actually from life 11 experience. 12 So, if you -- when you say, Have we had a 13 good experience with the insurance companies? 14 No; because, literally, at a moment's notice, 15 our daughter would have called us up and said, This 16 is my last day, you have to come and get me. 17 And that's gut-wrenching, because we know 18 that she's not cured. 19 And we know that from other people as well. 20 The eating disorder will pick up and it will 21 thrive on that, because it will say, Oh, I'm cured, 22 but, I want to do more. I want to just -- I really 23 want to take over. 24 DR. DOUG BUNNELL: So certainly one other 25 frontier for work, if you need more work, would be 1 to look at, sort of, the insurance, sort of, 2 standards. 3 I mean, they vary tremendously across 4 policies, across states. 5 Definitions; insurance companies have 6 different level-of-care criteria that are 7 increasingly transparent, but not always easily 8 transparent, so it's hard to know how they're 9 actually making decisions or authorizations about 10 level of care. 11 And, so, there are other states that have 12 done some work in this area too. 13 SENATOR CARLUCCI: Great. 14 Well, thank you so much. 15 DR. DOUG BUNNELL: Thank you both so much. 16 NEILL WEISS: Thank you. 17 SENATOR CARLUCCI: Our next panel is on 18 mental-health supports and services. 19 We have Edgardo Sanchez, and 20 Ilana Slaff-Galatan. 21 EDGARDO SANCHEZ: Good afternoon. 22 SENATOR CARLUCCI: Good afternoon. 23 EDGARDO SANCHEZ: Senator, it's nice to see 24 you again. 25 SENATOR CARLUCCI: Yes. 1 EDGARDO SANCHEZ: I'm going to say, thank you 2 for holding today's public hearing, and for giving 3 us the opportunity to testify. 4 We appear before you today, not as 5 mental-health professionals or governmental experts; 6 but, rather, as a family with nearly 38 years of 7 experience with the New York State provides -- 8 excuse me, which the way New York State provides, 9 or, in many cases, is unable to provide, 10 desperately-needed services for those with mental 11 illnesses in developmental disabilities. 12 Let us tell you about our experiences. 13 First I want to say, my wife -- I get very 14 emotional -- my wife can't, or won't, make these 15 meeting because she feels very guilty about our son. 16 Okay. 17 Our son Brandon (ph.) Sanchez began to 18 exhibit alarming behavior very early in his life. 19 He suffered with generalized grand mal 20 seizures from the time that he was six months old, 21 and was diagnosed with a medical condition known as 22 "tubular sclerosis." 23 Tubular sclerosis is a rare multi-system 24 genetic disease that causes tumors to grow on the 25 brain and other vital organs. 1 A combination of symptoms, including 2 seizures, intellectual disability, developmental 3 disability, behavior, problems in skin, and other 4 abnormalities; all of which my son suffers from. 5 At the age of 2, he was enrolled in a day 6 program close to our home. 7 Staff in the facility were trained well 8 enough to work with children with Brandon's 9 condition; those that mentally challenged and suffer 10 from autism. 11 So my son has the double-whammy. 12 From the age of 6, Brandon began to exhibit 13 violent self-injury behaviors, such as slapping, 14 pinching, biting, himself, and sometimes others. 15 At that age, also, he was breaking all the 16 windows in the house with his head. 17 Never got cut. 18 I got cut. 19 He displayed this behavior so frequently 20 that, physically, he appeared to be an abused and 21 battered child, which have been called many times, 22 cops used to come to my house. 23 He also exhibited rumination and projectile 24 vomiting, which has caused some ulcers and scarring 25 of his trachea and stomach. 1 Due to the force which he slapped his face, 2 Brandon suffered detached retina, which had to be 3 surgically reattached. 4 Because of all the dangerous and maladjusted 5 behaviors that my son was displaying, the day 6 program was no longer acclimated to or functional. 7 The staff could no longer meet his needs. His 8 behaviors had become extremely self-injurious and 9 life-threatening. 10 We did much research, and visited numerous 11 facilities recommended by the mental-health 12 officials in New York. 13 Okay, one of them was Creedmoor. 14 If anybody knows about Creedmoor, that's more 15 like a freaking prison than a mental institution. 16 Okay? High fences, barbed wires, I ruled that out. 17 When Brandon was 12, we chose the 18 Judge Rotenberg Center in Canton, Massachusetts. 19 Brandon has been at the center for 25 years. 20 He is now almost 38 years old. 21 Honestly speaking, it was a heart-wrenching 22 decision to place him outside of our home, but our 23 first visit to the Judge Rotenberg Center, we sensed 24 that this might be the right place for Brandon. 25 Upon presentation of the center's strong 1 behavior approach, the extensive monitoring of 2 staff, and rigorous quality-control measures, and 3 consistent approach to treatment, we became 4 convinced that this program was capable of 5 effectively treating our son's dangerous behaviors 6 and could afford him the quality of life that he is 7 entitled to. 8 Our initial apprehension, when Brandon first 9 came to JRC, which was formerly called 10 "Behavioral Research Institute," which I'll explain 11 how they got "JRC" later, has given way to 12 acceptance, and then gratitude. This program has 13 proven to be a lifesaver for our son. 14 After admission to the Judge Rotenberg 15 Center, Brandon's life-threatening behaviors 16 plummeted, and he started to smile again. He spends 17 most of his days happy and relaxed. 18 His skin was healed, but no longer looks 19 bruised and battered. 20 We thought this was where Brandon would find 21 a safe haven, and time has proven us right. 22 We have learned through the years how capable 23 and compassionate and well-trained their staff are, 24 which makes us extremely comfortable in knowing that 25 his every need is being met in a professional manner 1 and safe environment. 2 When he comes home, and he's home for the 3 weekend, we almost thought he would have a problem 4 to go back. 5 Come Sunday, he's ready to go back, on his 6 own. And this is from a young man that really 7 doesn't have the capacity, you know, to fully 8 understand. 9 We couldn't be happier in his progress and 10 his current quality of life. 11 Brandon is content at JRC, and that puts our 12 minds at ease. 13 Were it not for this program, we would fully 14 believe that our son would not be alive today. 15 And I'm going to give you an instance. 16 Some years ago, my son's program was taken 17 away from him, because of the contribution -- 18 controversial procedures that they use at the 19 school. 20 Finally, Judge Rotenberg had the insight, and 21 the compassion, to restore his program. 22 My son dropped down to 35 pounds. 23 Talking about disorders, eating disorders, 24 that's a biggie. 25 And, that's why they changed the name from 1 BRI (Behavioral Research) to Judge Rotenberg Center. 2 He was our crusader for the school and the 3 rights of the children. 4 We are not lawyers, and we cannot speak to 5 you about Olmsted decision, and how New York goes 6 about the task in implementing it, but we urge you 7 to remember, that bringing Brandon closer to home or 8 putting him in a less-restrictive environment is not 9 doing Brandon any favors. 10 Huh, just the contrary. 11 Unless and until New York State has developed 12 programs that have the experience and resources to 13 treat our son effectively, and to continue to keep 14 him safe and healthy, bringing Brandon back to 15 New York will only harm him. 16 I sincerely feel that from my heart. 17 My son comes back to New York, without the 18 proper program, just put him up against the wall and 19 shoot him, because he's not going to last long. 20 We have been told by many professionals that 21 if our son is forced to return to New York and he 22 fails one of the [unintelligible] community 23 programs, he would not likely -- I mean, he would 24 most likely end up in a development center or other 25 type of psychiatric facility. 1 My son deserves a continue -- to continue to 2 remain in a highly-structural program that has 3 served him well over the past 25 years. 4 Forcing him to return to a system of care 5 that failed him so badly would definitely prove to 6 be cataphobic (ph.). 7 We don't want to see Brandon placed in a 8 life-threatening situation, robbed of the 9 opportunity that we all entitled to as human beings, 10 which is life itself. 11 Sometimes I feel an inmate gets better 12 treatment in prison and has more rights than my son 13 does. 14 I mean, to feel like that, I tell you (makes 15 a sound). 16 New York maintains a philosophy of 17 person-centered planning for individuals with 18 developmental disabilities. 19 Because our son does not have the capability 20 of making decisions for himself, he does not speak. 21 His IQ, people don't have to worry about 22 "mental retardation." 23 I use it. I'm not afraid of it. It's in the 24 dictionary. 25 People get offended sometimes. 1 I do not get offended by that word. 2 And to me, my son is brilliant. 3 In his own way, he is brilliant. 4 However, we are sure that if our son could 5 express his choice, he would choose to live in the 6 home that he has resided for the last 25 years with 7 the people that know him best and are most capable 8 of caring for them. And they do. 9 I see it every time I go. 10 I go there unannounced. I have leeway; 11 I decide. 12 My brother, he's a big crusader. 13 He's a state rep, Jeffrey Sanchez, from 14 Boston. He's been fighting for the school for years 15 now. 16 Olmsted implementation must be done in a 17 manner that reflects compassion, common sense, and 18 sound judgment. 19 Tearing Brandon away from the home where he 20 has found respite for the past 25 years, to try and 21 improve a potentially dangerous place, is cruel, 22 dangerous, and counterproductive. 23 We urge you, as the Chair of the 24 Mental Health Committee, to show that people like 25 our son are not put at risk in had name of 1 implementing the Olmstead decision. 2 That Olmstead decision is -- if there was a 3 program in New York, man, bring him back. 4 I would love to have my son back. 5 But, that's the reason that we were sent to 6 Massachusetts, because there wasn't. 7 There wasn't a program 25 years ago, and 8 there isn't one now. 9 So, I don't know, how -- how -- what the 10 result of this is going to be, because, I don't know 11 if the Governor is going to have enough compassion 12 to pass that bill. 13 I don't know. 14 I don't know. 15 ASSEMBLYWOMAN JAFFEE: That's my legislation. 16 And I wrote that legislation in response to 17 situations that I heard about, families that I have 18 discussed this with. 19 And, truthfully, I think it's unacceptable to 20 arbitrarily demand that they return, especially 21 over 21. 22 So, the legislation would provide the 23 opportunity for the parents to seek -- to be able to 24 contest that in court. 25 At least have an opportunity to suggest that 1 the placements that are suggested are not 2 acceptable, based on the circumstances. 3 So, we are waiting to pass both the Assembly 4 and the Senate, and we are awaiting the Governor to 5 sign it -- 6 EDGARDO SANCHEZ: We were informed, and we 7 were told, that if our children are placed in a 8 state institution, right, we might have no rights. 9 If it doesn't work, we may not have no 10 rights. 11 ASSEMBLYWOMAN JAFFEE: That's right. 12 EDGARDO SANCHEZ: They might take our rights 13 away from us. 14 I'll be damned if they do that. 15 ASSEMBLYWOMAN JAFFEE: It's unacceptable, 16 you're right, and that's why I sponsored the 17 legislation. 18 And I hope that the Governor will hear your 19 message. 20 EDGARDO SANCHEZ: Well, I hope he does. 21 I sent him enough e-mails. 22 ASSEMBLYWOMAN JAFFEE: Thank you for your 23 courage. 24 EDGARDO SANCHEZ: Thank you. 25 SENATOR CARLUCCI: Ilana. 1 ILANA SLAFF-GALATAN: Hi. Thank you, 2 Senator Carlucci, for holding this public hearing 3 and giving us the opportunity to have our voices 4 heard. 5 And thank you, Assemblywoman Jaffee, too, for 6 listening us to. 7 I have identical twin brothers, and I have a 8 daughter, with autism. 9 I'm also a practicing psychiatrist. I 10 completed many fellowship at the Mount Sinai Seaver 11 Center, in autism. 12 And, I am concerned about the supports and 13 services for individuals, and families, dealing with 14 developmental disabilities in New York State, 15 particularly regarding my brother. 16 My brother Matthew has been living at an 17 out-of-state residential adult facility in 18 Massachusetts, the Judge Rotenberg Center, for over 19 25 years, after he was placed at the Judge Rotenberg 20 Center, at age 17. 21 He's on seven positive-behavioral contracts 22 at once, and, he earns preferred items all day long, 23 for being safe. 24 He also receives functional-communication 25 tokens to help him to request breaks rather than 1 having a dangerous behavior. 2 When living at home, my brother banged his 3 head into sharp corner. He also developed 4 neuroleptic malignant syndrome. That is a deadly 5 side effect you can get from anti-psychotic 6 medication. 7 He developed it from Haldol. 8 And, he also required surgery to his head for 9 self-injury. 10 He was in the hospital for 5 1/2 months, and 11 despite having a staff member present with him 12 around the clock, he continued to need repeated 13 suturing for repeated headbanging. 14 And this all occurred despite polypharmacy, 15 with five medications, which gave him obesity, 16 tardive dyskinesia, loss of ability to verbally 17 communicate, drooling, and daytime -- excessive 18 daytime sedation. 19 He was sleeping about 16 hours a day. 20 The Board of Education told my mother that 21 there's no educational facility that will accept 22 him, and, she was requested to waive his right to an 23 education. 24 In other words, they felt he was untrainable. 25 She refused. 1 Furthermore, the medical insurance was 2 running out, and my parents were told that they 3 could be held responsible for the hospitalization 4 costs. 5 And I remember my father wondering, Could the 6 hospital possibly take our house from us? 7 However, through my mother's, physician, she 8 was informed about the Judge Rotenberg Center. 9 He's been doing quite well there for over 10 25 years. No more headbanging, and no medication. 11 He was on an aversive device, a 2-second skin 12 shock. He hasn't needed it now for over two years. 13 And, we've taken him on trips to other 14 states. 15 My other brother who is not at JRC, he was 16 functioning quite well in the past. And as an 17 adult, had a full-time job for about three years, 18 without any medication, and he was travel-trained. 19 He moved into a New York State Office of 20 People with Developmental Disabilities (OPWDD) 21 -funded agency residence while holding this job. 22 He lost his job after a fellow co-worker 23 teased him. 24 My brother, because of his autism, he knew he 25 worked nine to four. And this co-worker kept 1 repeating to him, you have to work until five today. 2 My brother got more and more agitated, 3 grabbed this butcher knife, and lost his job. 4 And then, after he lost his job, he totally 5 deteriorated in his functioning. He became obsessed 6 with setting fires. He tried to set a pier and 7 himself on fire. He's had numerous 8 hospitalizations. 9 Although the staff at the residence where he 10 lives, they're kind and concerned, he has failed the 11 positive-behavior supports with the 12 functional-behavior assessment, determining the 13 functions of the behaviors. And, he has had the 14 positive therapies, but they have never been nearly 15 as intensive as what JRC has been able to provide to 16 his twin. 17 He's been on at least 15 medication trials 18 which has caused obesity, tardive dyskinesia -- 19 those are permanent, abnormal, involuntary movements 20 that he has -- sedation, and seizures. 21 At a family gathering, he became agitated, 22 obsessed with material, and he hit my grandmother, 23 who was then 99 years old, in the face. 24 He was too agitated to attend her 25 100th birthday party, even though he lived in the 1 neighborhood. 2 And his twin came in from JRC. 3 So, the Olmstead decision is not applicable 4 if someone has dangerous behavior. 5 You can't -- dangerous behavior precludes 6 community integration. 7 In the past, at least in New York, people are 8 discharged and suspended from their day programs due 9 to behaviors. 10 This happened to a number of my patients. 11 They're left alone at home with an elderly 12 parent in a potentially dangerous situation. 13 So, in other words, if the day program, with 14 all their professionals, can't handle the behavior, 15 they dump the problem onto the elderly parent. 16 Two prior students from JRC (Judge Rotenberg 17 Center), who returned to New York, they died from 18 their behaviors in their 20s. 19 I do not want my brother to die too. 20 There are many problems with medication 21 management for self-injury. And this, 22 unfortunately, is being used pervasively in New York 23 in replacement for applied-behavior analysis. 24 Yes, there are some people who need 25 medications, but we should not be replacing ABA with 1 medications. It's completely unethical; it's wrong. 2 Risperdal received FDA approval for autism. 3 However, in the -- those clinical trials, that were 4 placebo-controlled, they did not differentiate 5 between mild and severe behavior in their outcome 6 measures. And, they used an outcome measure known 7 as the "Aberrant Behavior Checklist." 8 Only 3 of the 15 components on that list 9 relate to self-injury. They never published the 10 breakdown of those components. 11 And, also, the sedation rate for those 12 individuals with autism in the Risperdal trials was 13 49 percent. 14 That's opposed to the single digits for 15 schizophrenia and bipolar disorder. 16 Okay? All right? 17 So we're using a lot of chemical sedation. 18 And we don't know if those -- because of the 19 high sedation rate, we do not know if that reported 20 improvement in the total behavior and that -- in 21 that outcome-measure score was due to -- had the 22 sedation had an influence on that. 23 In addition, when we looked at ABILIFY 24 (aripiprazole), which also received an FDA approval, 25 they did publish that breakdown on that 1 Aberrant Behavior Checklist outcome measure -- 2 irritability subscale outcome measure. 3 And when they looked at self-injury, those 4 three components, they did not do better than 5 placebo -- they did not do significantly better than 6 placebo, even though the total score showed an 7 improvement. 8 So, that's really important to note when 9 we're using these medications for self-injury. 10 Furthermore, up to 60 percent of individuals 11 with autism, without clinical seizures, if you do 12 EEGs (electroencephalograms) on their brain, you 13 will notice that they have subclinical seizures. 14 They have seizure activity that you don't see 15 clinically. 16 Now, you put them on these anti-psychotics, 17 you can bring out the seizures. 18 And that happened to my brother. 19 It also can be particularly dangerous to use 20 medication in individuals who can't communicate 21 their side effects, and, you can't get them to 22 comply with the prescribing guidelines, such as 23 blood pressures and blood tests. 24 I do not want my brother at JRC to be placed 25 on medications again, when intensive-behavior 1 management has shown them both to be unnecessary and 2 previously ineffective for him. 3 I have been working with the 4 developmentally-disabled population, exclusively, 5 for eight years in New York. 6 And like my brother who also lives in 7 New York, there is no choice but to administer 8 polypharmacy that makes these individuals sleep much 9 of the day to control their behavior. 10 They have diabetes, heart disease, liver 11 toxicity, among other adverse effects. 12 Sometimes they die very young from these 13 adverse effects, in early adulthood, because they 14 have all of these adverse effects for years. 15 When I see them, I think of my brother at 16 JRC, and how, by returning him to an inappropriate 17 placement in New York, he will be like them, either 18 sick or dead. 19 And that precludes the Olmstead Act, because 20 that's not community integration. 21 Recently, an OPWDD-funded agency where my 22 cousin resides attempted to remove his parents' 23 legal guardianship, because his parents refused to 24 consent to more toxic medication. 25 They took my cousin to court. 1 In the past, OPWDD has sent my parents a 2 letter, asking for our agency preferences. 3 I left messages, return messages, on the 4 phone number provided in that letter. 5 No response. 6 I sent a certified letter to OPWDD. 7 No response. 8 My school district has never been 9 unresponsive to this degree with my daughter, 10 because they know I have the right to an impartial 11 hearing. 12 Placements that have been offered so far by 13 OPWDD to my brother have not even had a 14 board-certified behavior analyst on staff. 15 The placements OPWDD proposed did not provide 16 intensive positive-behavioral interventions, 17 functional-communication tokens, or aversive 18 therapy. 19 An independent expert who visited the 20 placements has stated that my brother's life would 21 be in danger at these facilities. 22 My family only wants to make sure my brother 23 is safe and can function. 24 The State made the right decision 25 -- 25 until -- for the past 25 years, to keep him in a 1 place where he can be safe and function, until they 2 could develop a place in New York that he could be 3 safe and function. 4 Given that the current state of support and 5 services in New York for individuals like my brother 6 is so clearly inadequate, we are gravely concerned. 7 Moreover, it is an inherent conflict of 8 interest for a funding agency; in this case, it's 9 OPWDD, to unilaterally decide what is appropriate. 10 We are only asking for the same due-process 11 rights that all disabled individuals in New York 12 have, and which everyone with a disability under the 13 age of 21 has. 14 If S-7374/A-9729, which I'm so grateful that 15 you sponsored, is signed by the Governor, my brother 16 will have those rights. 17 He was only placed outside of New York to 18 begin with because no place in New York would accept 19 him. 20 And, again, we only want my brother to live, 21 function, and have a quality of life. 22 That's all we're asking for. 23 I have a statement from the JRC Parents 24 Association. If anyone is interested, they could 25 pick it up. 1 SENATOR CARLUCCI: Great. 2 Well, thank you so much for your testimony. 3 We really appreciate it. 4 Thank you. 5 ASSEMBLYWOMAN JAFFEE: Thank you for sharing. 6 ILANA SLAFF-GALATAN: You're welcome. 7 [Applause.] 8 SENATOR CARLUCCI: And our next speaker is 9 Susan Kent, who's the president of the 10 Public Employees Federation. 11 SUSAN KENT: Good afternoon now, isn't it? 12 Good afternoon, Senator Carlucci. 13 Good afternoon, Assemblywoman Jaffee. 14 SENATOR CARLUCCI: Good afternoon. 15 SUSAN KENT: So, I was told I was long-winded 16 last time, so I won't be long-winded today. 17 Thank you for holding this hearing. 18 I have brought testimony with me too. 19 SENATOR CARLUCCI: Great. 20 SUSAN KENT: Additional testimony. 21 So, you've said who I am. 22 I'm Susan Kent, and I'm very proud to 23 represent the members of the Public Employees 24 Federation. 25 We are 54,000 members' strong, and we are the 1 professionals that provide the services in the state 2 of New York, including services to individuals 3 living with mental-health issues. 4 I want to thank you for your leadership in 5 ensuring in this year's state budget -- 6 And this was no small feat on your part, and 7 I can't stress enough, our thanks. 8 -- that any savings resulting from 9 Governor Cuomo's proposed mental-health-facility 10 closures, should be, must be, reinvested in 11 community mental-health-care services, to follow the 12 patients prior to any closing of any facilities. 13 As we have seen far too often, when public 14 facilities close, the savings from those closures 15 rarely make it into the community, and the results 16 are disastrous. 17 Patients, with nowhere to go, do not receive 18 the care or treatment they need. 19 Many end up in costly emergency rooms, on the 20 streets, in jail or prison, or, even worse, God 21 forbid. 22 As you may be aware, the Treatment Advocacy 23 Center is a national not-profit organization 24 dedicated to eliminating barriers to the timely and 25 effective treatment of severe mental illness. 1 According to an April 2014 report by the 2 Treatment Advocacy Center, there are 10 times as 3 many persons living with mental illness in jail or 4 prison as there are receiving the necessary 5 treatment in psychiatric inpatient facilities. 6 Jails and prisons have become the new 7 alternative to inpatient psychiatric facilities in 8 our society because the money saved from closing 9 facilities was never reinvested into community 10 mental-health-care programs. 11 We absolutely need to remain steadfast that 12 this does not occur again. 13 That is why it was crucial to push a 14 requirement to reinvest those savings into the 15 community at the beginning of the process, and 16 before, any actual facility closures took place. 17 Again, your leadership in sponsoring 18 legislation in the Senate and in the Assembly is 19 vital for both of the patients and for my members. 20 Last month, OMH began releasing funding for 21 various community-based programs, totaling 22 $6.6 million around New York State. 23 Just last week, OMH announced that the 24 Hudson Valley would receive $2.25 million, for 25 several counties, including $449,668 for 1 Rockland County, and 225,000 for Sullivan County. 2 As an initial investment for community-based 3 services, these dollars are a good and positive step 4 forward. 5 If such investments can better manage 6 mental-health care so those in need remain active 7 and healthy persons in the community, that is what 8 we all want to achieve. 9 Those individuals most at risk of emergency 10 room visits and hospitalizations must have competent 11 mental-health-care treatment available to them in 12 the community now more than ever. 13 Unlike a system that had the ability to refer 14 a serious mental illness that is occurring in an 15 individual to inpatient services, that option will 16 be limited, based on the Governor's plan to limit 17 access to inpatient services. 18 Therefore, it is absolutely imperative that 19 the expert professionals who presently provide such 20 care in facilities must also be available in the 21 community. 22 State-provided services are necessary; they 23 are crucial. 24 We seek your help during this transition, to 25 make sure we are included in the ongoing process of 1 development and implementation of the plans as these 2 services are transitioned into the community. 3 It is so important that we work together and 4 utilize all of the expertise available to us, which 5 includes my members, in forging a plan that protects 6 the patients, serves the needs of our communities, 7 and continues the high-quality of care provided by 8 mental-health professionals whose expertise, 9 knowledge, and dedication is invaluable. 10 In an effort to suspend certain passage of 11 legislation that would have placed a moratorium on 12 facility closures, the Governor agreed, with the 13 Senate and the Assembly, to a number of conditions, 14 including the formation of a workgroup, with union 15 representatives, to put together a long-term plan on 16 how we will provide mental-health and 17 developmental-disability services in the future. 18 Although PEF did appoint representatives who 19 served on the Regional Centers of Excellence 20 committees, to date, I am sorry to report to you, we 21 have not been included in any such workgroup; nor, 22 have we gotten any kind of call back from the 23 Governor's staff about this. 24 And I must also say to you, that after 25 Primary Day, I spoke personally with the Governor, 1 who did not seem to be aware that this workgroup was 2 to be formed, and, did not speak very positively 3 about whether or not he would ensure that we would 4 be included. 5 I know this is a strong statement, but it's a 6 truthful statement. 7 And I'm telling you, because, when you put 8 your reputations on the line, to form an agreement, 9 I'm sure that you want to make sure that the 10 agreement that you entered into is going to be 11 followed through with. 12 And, so, I need you to know what has not 13 happened. 14 And we need to be wary that we are going into 15 another budget session, and after election day, 16 maybe we will continue this year's legislative 17 session, and you need to be aware that what was 18 promised to you, has not happened. 19 Again, I want though thank you for your 20 leadership about requiring a detailed plan for the 21 savings from the closing of inpatient psychiatric 22 facilities, that they would be reinvested into 23 community-base mental-health-care services prior to 24 the commencement of the closing of these facilities 25 is absolutely crucial to ensure not only that the 1 necessary care is provided, but is provided by 2 experts. 3 This is crucial, because the inpatient 4 mental-health-care-facility closures have 5 historically led to a deplorable lack of 6 mental-health-care services, homelessness, suicides, 7 crimes, incarceration, of people living with mental 8 illness. 9 In addition, too many individuals with mental 10 illness, having no place to go, fall victims 11 themselves to violent crimes, and many are unable to 12 manage chronic-health illnesses, such as asthma and 13 diabetes, which result in unnecessary 14 hospitalizations. 15 As I mentioned, recently, OMH has delivered 16 additional funding for community-based 17 mental-health-care services throughout the state. 18 And, as we continue to review these 19 reinvestments, it is important to determine which, 20 if any, of these services can deliver the necessary 21 care and support that patients would otherwise need, 22 and to receive, as they transition from psychiatric 23 facilities to the community. 24 We must be a major stakeholder in the 25 process, moving forward. We have the experience and 1 expertise in the delivery of mental-health-care 2 services that must, must, must be included in any 3 plan. 4 Our members know their patients, they know 5 the mental illness they're living with, they know 6 what the best practices are in the various settings, 7 and are always developing informed and creative 8 methods in providing quality care to our patients. 9 While there have been indications that PEF 10 members and other public employes will eventually be 11 shifted to community-based treatment services, along 12 with the patients, no details of this process have 13 yet to be provided. 14 We stand by our earlier statements, that 15 closing inpatient psychiatric facilities will result 16 in a multitude of problems for patients, and, will 17 have a negative economic effect on the communities 18 these facilities serve. 19 We fear dangerous patients will fall through 20 the cracks, many of whom will become victims of 21 violence, while others may harm others. 22 With so many mental illness in jails and 23 prison, we remain worried that New York will follow 24 a similar path witnessed in other states that close 25 too many state psychiatric inpatient facilities, as 1 reported in the Treatment Advocacy Center report 2 released last April. 3 PEF represents nearly 7,000 OMH employees. 4 They are invested in the communities, and possess 5 the clinical expertise that provides an important 6 piece of the safety net for New York's most 7 vulnerable citizens. 8 Please, please, help us to ensure that these 9 critical services for people living with mental 10 illness are maintained. 11 Thank you so very much for your time, and 12 thank you for the work that you do. 13 [Applause.] 14 SENATOR CARLUCCI: Thank you, Susan. 15 We look forward to working with you in the 16 upcoming legislative session. 17 SUSAN KENT: Thank you. 18 And I wish you both very well. 19 ASSEMBLYWOMAN JAFFEE: I'll start making some 20 calls tomorrow. 21 SUSAN KENT: Thank you. Thank you, both. 22 ASSEMBLYWOMAN JAFFEE: Maybe we'll find out 23 what's happening. 24 SENATOR CARLUCCI: So we have, our last 25 speaker, is Diana Siegel, who is representing 1 NAMI Familya. 2 DIANA SIEGEL: After hearing Susan Kent, who 3 I had never met, I am a member of a different union, 4 but you make me proud to be a union member. 5 And Susan has described the condition so well 6 in Rockland County. 7 I did put up two poster-boards there, with 8 articles from local newspapers, "New York Times," 9 et cetera, written by people who are very concerned 10 with the dire situation of people with mental 11 illness, in the country, in our state, and, in our 12 county. 13 I represent NAMI of Rockland. 14 We are an organization, largely voluntary, 15 that offers support, education, and advocacy for 16 people with mental illness. 17 And we are so grateful to you, 18 Senator Carlucci, and to you, Representative Jaffee, 19 for taking so great an interest in our community. 20 Particularly, we are in the process of 21 receiving a grant that will enable us to expand our 22 services to people with mental illness and their 23 families in our community. 24 There are some specific needs which have been 25 generally addressed, but I will try to point them 1 out, with some emphasis; and that is: 2 We desperately need a central place of access 3 for evaluation and reform, since the disillusion of 4 the Pomona Complex. 5 Nyack Hospital has a different kind of 6 program, different kind of emphasis. 7 And, at present, there is no central place 8 where people in crisis can go when they need help. 9 NAMI has a hotline. We are, very often, the 10 first point of contact. 11 We have services within our voluntary 12 organization that provides education to families. 13 But, there must be a place that people are 14 aware of, that people know they can go to, when they 15 need help. 16 There was a partial hospitalization program 17 which was a wonderful facility up at Pomona. It was 18 one of the first programs that was closed. 19 Because, when people who have been 20 hospitalized return to the community, they are not 21 ready to access what the community has to offer. 22 They need supportive help to transition. 23 And that partial-hospitalization program, 24 which I know of personally, provided that help. 25 So, I would like you to consider that kind of 1 a facility. 2 We also need mobile crisis 24/7. 3 So if you would, please, consider that. 4 In the disillusion of Pomona, organizations, 5 the Mental Health Association, and Jawonio, have 6 picked up services, largely, for people who are 7 ready to move into the community. 8 But, people with, you've heard the term 9 today, "persistent, serious mental illness," have 10 been cut out. We used to have day-treatment 11 centers, a place where someone could get up to go. 12 They have been disparaged, but they provided 13 a service, where you meet people, where you get 14 support from professionals, where there's a place to 15 eat and socialize, rather than hanging around in 16 front of a television set at home. 17 So please consider restoring places for 18 people with persistent, serious mental illness to 19 go. 20 We are appreciative of the current 21 mental-health alternatives for incarceration. 22 Please expand it, continue it. Don't let it 23 go. 24 It's so important, as you heard from that 25 excellent panel today. 1 CIT training, we need that. 2 We need more children's services. 3 And I thank you. 4 I won't keep you any longer. 5 You have been wonderful to us, and we are so 6 appreciative. 7 Thank you. 8 SENATOR CARLUCCI: Thank you very much. 9 ASSEMBLYWOMAN JAFFEE: I have just one 10 question, regarding the children's services. 11 Specifically, you're discussing a site where 12 families could bring children to be with each other. 13 What kind of service? 14 Mental-health-specific? Mental-health 15 psychologists? 16 What -- 17 DIANA SIEGEL: This kind of information 18 I have received from the person who does our 19 family-basics program. 20 When the families finish, it's a six-week 21 program, where we help to train families to deal 22 with children and adolescents with mental illness. 23 And, we have been told by Ann Arias (ph.), 24 who runs this program, that after the program's 25 over, there's no place to take the children. 1 There just aren't -- psychiatrists and 2 psychologists in the county do not accept Medicaid 3 or Medicare. Some don't even accept insurance. You 4 need to, you know, pay, pay, pay, cash. 5 So I would say, all of the above, yes. 6 We need places for the children to go, where 7 there are professionals, where they can receive 8 services. We need professionals who will accept 9 Medicare and Medicaid. 10 Yes. 11 Thank you very much. 12 SENATOR CARLUCCI: Thank you. 13 Well, we really just want to thank everyone 14 for coming here today; for sharing your stories, 15 your experiences. 16 If there is additional information you would 17 like to provide to us, we'll accept written 18 testimonies so we have it on the record. 19 This is extremely important for us, to make 20 sure that this dialogue is had, that we can share 21 these stories with our colleagues in the 22 Legislature, and make sure that these issues are 23 being addressed. 24 So we covered a wide range today. 25 And I really, again, want to thank all of you 1 for the work that you're doing. For standing up, 2 and sharing your experiences, your troubles that 3 you've have had, the problems you've encountered, 4 but ideas that you have for future on how to fix 5 them. 6 So, thank you so much for being with us 7 today. 8 And, with that, our Committee meeting is 9 adjourned. 10 Thank you. 11 ASSEMBLYWOMAN JAFFEE: Thank you. 12 13 (Whereupon, at approximately 1:40 p.m., 14 the public hearing held before the New York State 15 Senate Standing Committee on Mental Health and 16 Developmental Disabilities concluded, and 17 adjourned.) 18 19 ---oOo--- 20 21 22 23 24 25

Public Hearing to Examine Supports and Services for Individuals and Families Dealing with Mental Illness in New York State

Transcript