2005-2009 Statewide Comprehensive Plan for Mental Health Services
Hudson River Region
Kingston
June 24, 2005 5.07 Testimony
- Marshall Beckman, Director
Ulster County - Ruth Fennelly, Parent
- April Tiffany Weller
- Jeff Keller, Deputy Director
National Alliance for the Mentally Ill of New York State - Isaac D. Rubin
NAMI Mid-Hudson
Marshall Beckman
Director
Ulster County Testimony
The seven counties in the Hudson River Region (Putnam, Dutchess, Sullivan, Rockland, Westchester, Orange and Ulster) have been working with David Woodlock and the HRFO to address planning concerns regarding children's mental health services. The genesis of this project was and is our region-wide concern that there are not enough geographically accessible inpatient psychiatric beds for children and adolescents in our region. Consequently, many youth are sent to inpatient units far outside their communities, making it impossible for their families to participate in their treatment. As a result, treatment outcomes are almost always compromised. It should be noted that mental health directors from Suffolk to Erie counties now recognize this situation as a statewide problem.
Several years ago, we joined together to seek an increase in beds for our region, but were advised by OMH leadership that new beds would not be supported and that we should focus our energies on developing community-based mental health services that would prevent hospitalizations. We concurred, but were also advised that OMH had no money to support such development-we were on our own… until now.
Last year, David Woodlock made a commitment to work with our region to explore what it would take to develop model continuums of services for youth in our communities, as well as financing models to establish these continuums. A work group of children's services experts from every county in our region has met with David several times, and have identified several opportunity areas that that we feel would enable us to achieve our goals, including respite services, training in new treatment models, and school-based treatment services, to name a few. The problem is that our financing is timed up primarily in Medicaid reimbursements for treatment services, and we lack the flexibility to move the dollars toward investments in the aforementioned services. Sadly, this prevents all of us from achieving better treatment outcomes. Moreover, it prevents the Federal, State and local governments from realizing significant dollar savings by preventing high cost hospitalizations, incarcerations and out-of-home placements. The problem is that the savings don’t occur in OMH’s budget – they occur in the Health Department’s budget, or in the budgets of our “multiple systems partners.”
With David’s support and leadership, we have identified a strategy. We need additional funding now to make the investments in these opportunity services. If the savings will ultimately accrue to those other partners, they will hopefully be interested in making those investments now. Overall, this is a win-win strategy. But someone has to step up and take the initial risk.
On behalf of my colleagues, I’d like to commend David and the OMH for partnering with us in this important endeavor. I’d also like to urge the OMH to continue to provide leadership in this and other similar situations. Without this leadership, we stand little or no chance of improving services and improving cost-effectiveness.
In addition, I’d like to build on this example by expressing my desire to see planning conducted in a more collaborative style. Local governments are eager to be part of the solution. We are not entrenched in our current models of service delivery, and, in fact, are often frustrated by being locked in to a rigid system defined by Medicaid reimbursement models. I want to urge you to do future planning by allowing local governments and other stakeholders to first participate in defining the problems, and then to jointly develop solutions that will be effective for all parties. Too often we feel we are introduced first to the solution, and then spend our time working backwards.
Our work with David Woodlock is an excellent example of how collaborative planning can succeed. We encourage you to make this process the standard.
This is a written copy of the verbal testimony I, Ruth Fennelly intend to give on June 24th. I do not however intend to read my testimony so my verbal may differ slightly from this written testimony.
I would first like to thank OMH for allowing time for stakeholders and interested parties to comment on the strategic plan. And as requested I will first comment on the goals and objectives of the plan.
I am not sure if the seven goals presented capture the full range of priorities, as I am not sure who set these priorities. My role here today is that of a parent and although my child is now a young adult my advocacy has always been for children and families. This will be the focus of my comments.
Goal number one needs to include a statement about stigma and the reduction of stigma through education and understanding. We need to include something about understanding the symptoms and treatment not necessarily the causes. I don't know that we are sure when it comes to children. Promoting early intervention and prevention strategies are part of the CASSP Principles and a strong priority for families.
Goal two focuses on quality and I believe a major responsibility of the State Office of Mental Health. I just wish to comment on outcomes and outcomes measures. I want to be sure that when we discuss outcomes that we remember they are as different as the individuals and/or programs are. I would like to request that families assist in determining what outcomes we are using to measure performance. Example - increased attendance in school could just mean the child goes and puts his head down the hold day or spends the entire day in the principal's office.
For Goal three, I have a question - Does the use of the word improve in each objective infer that currently accountability is inadequate. I will agree that we need improvements to access, quality and appropriateness. Maybe a better term would be increase 3.1 increase stakeholder participation, 3.2 Increase care coordination, 3.3 increase and improve oversight of medication especially oversight of cost. 3.4 inserting to word increase could address the need for more child psychiatrists.
Goal Four, I must say because I know little about research. Therefore I would like to see the ties strengthened between the scientific community and the general public especially the stakeholders.
Goal 5 again raises the same concern I mentioned about who determines outcomes and or effectiveness. Please find a way to allow input from families. Thank you for including families in the treatment planning but we would like to also have a role in all planning efforts. Did families have an active role is setting these seven goals? Are families a part of the PACC planning process?
Missing from Goal 6 is the cross system child or adolescent example those with developmental disabilities or MR as a special populations. Children should be considered a special population in and of themselves as they are extremely underserved or inadequately served in other systems. This the research has proven.
The only comment I have for Goal 7 is one I heard at the Mental Health Planning Counsel, there is a need to change the word maintain to increase or improve. We are not satisfied to just maintain current resources or maintain cost effectiveness.
Over the next several years if I have only these seven goals to choose from I would have to request that we look to prioritize goal 1 and goal 6 incorporating the changes I commented on earlier. A focus on wellness and effective services for children and their families will improve the quality of mental health services. Responsibility for oversight is a given and you would need to do that whether or not you write it into a 5 year plan. And if the plan were to increase or improve the capacity to achieve agency goals then I would rank this third on my list.
For the final question we have been asked to address I would like to suggest an initiative that incorporates family partnering in all the goals. Research has shown that involving families in planning, treatment and decision-making has been the most effective. OMH has not increased or improve the family support movement in over ten years. Family Support is recognized as a Best Practice yet many mental health programs fail to emphasis or require a family support component. May I suggest that any initiative that OMH supports in the future, that pertains to children, have a family support and involvement piece included. From planning to implementation to evaluation. And if the initiative is to be local and not state that the families be from the locality and that there be more than one family.
In closing I would again like to thank you for this opportunity to give testimony today. I hope that ideas shared today can be incorporate into the plan. And I again would like to emphasis the need to recognize that children with SED are a special population and they are part of a family. And that we try to incorporate the goal language set forth in the CASSP principles into the plan. Thank You.
Hello. My name is April Tiffany Weller. I feel that my life is affected by OMH, since I am a human being. I am diagnosed with a mental illness. Because I am diagnosed with a mental illness, the Columbia County Department of Social Services; (I live in Columbia County) took the children that I had, right when I had them. A Columbia County Family Court Judge, Judge Paul Czajka, allowed them to do this. For my first two children, I had a Foster Care Worker. She told me that I would not be allowed to breast feed my child. For my third baby, I was assigned to a different Foster care Worker. She told me that I was not allowed to breast feed him. With my first child, I was given an ultimatum by my court -appointed Public Defender: If I did not submit myself to taking courses of psychotropic medication, I would not get my child back. That was coercive. This was being upheld by the judge. As far as I know, there have been many formal complaints filed against this judge, and there is a website devoted to citing many examples of abuse of power by this judge. If I had had a different judge, things might have been different for me. He is still a Columbia County Family Court judge.
From what I can make out, from my own experience in dealing with The Columbia County Department of Social Services, and mental health agencies, and the Columbia County family court, people with (a) mental health diagnos(is)es, undergo and endure much more scrutiny and invasion of privacy than someone without (a) diagnos(is)es. This seems to be wrong, unfair, discriminatory, and a violation of human rights. There is still stigma.
If I had had stronger support services, I might have been able, legally, to keep my children.
The New York State Office of Mental Health Strategic Plan is nice. I would like to see, since there is and has been wonderful, strong deinstitutionalization and consumer-empowerment and a focus on recovery and community-integration movements; acknowledgement of consumers having children, and the positive, and therapeutic aspects of that; and incorporated into the plan that acknowledgement, by having strong recovery-based, consumer-driven principals infused into the family court/judicial system, possibly the criminal justice system so that if someone feels that a certain aspect of a court-ordered treatment plan would not be beneficial to them, they would have some say over what they would be participating in. Also, strong supports for parents with psychiatric disabilities, including much stronger legal supports – community residences for people with psychiatric disabilities that allow children.
I would like to see a strong commitment to keep families together, whether someone is diagnosed or not. This should prevent mental illness. Children brought up in foster care, are more likely to be mentally ill. Please remember that.
I agree with Medicaid reform. I have read about holistic treatment for mental, and physical ailments that is effective and safer than traditional drug treatments. It seems that we would all be better off, if Medicaid would pay for those things.
There are many benefits to home birthing. With my first two children, I could not find anyone who would accept Medicaid, who would do it. With my third baby, I found someone, but they said that they would have to take eight hundred dollars from me to pay the assistant. On my approximately six hundred dollars a month, that was too much.
If I had had a home birth, I might not have lost my children. I would like to see an acknowledgement of the benefits of home births, including the prevention of mental illness in the mother father and baby(ies), and more access to home births.
Children who are breast fed are more likely to be physically and mentally healthy, and to have a higher IQ, and to not become mentally ill. I would like to see that acknowledged in this plan, and I would like women with (a) mental illnesses to be accommodated to breast feed. Women in prison are. If their child is taken from them, I would like them to be accommodated to breast feed. If their child is not taken from them, I would like them to be accommodated. There should be more education about the benefits of home births and breast feeding. I did not know many until I was pregnant. I would like to see a commitment to enabling and encouraging home births, and breast feeding for people with (a) diagnos(is)es, and without.
I think that Social Services workers might want to be trained in these things, and in OMH's plan, including consumer directed recovery-based principles. They might have an. impact upon families which might have an impact upon mental health – work better with mental health agencies – collaborate, cooperate. They should not be so adversarial.
I have read about food. From what I have read, it seems as though food grown with pesticides, herbicides, fungicides, etc., may cause health problems. I have also read of evidence of food grown with I animal products causing health problems. It might be nice to see a commitment to a pesticide, herbicide, fungicide, animal product free organic approach to growing food.
I see many people in the mental health system who smoke cigarettes, pipes, and/or cigars. This causes pollution, and threatens their health, and the health of everyone else . It might be nice if there was a commitment to develop (a) movement(s) to get these people to develop healthier coping mechanisms, to quit smoking.
I think that my ideas focus upon preventing mental illness, and recovering from it.
I think that the goals and objectives that I have told you about should receive the highest priority attention. I think that they might encourage all the goals, and all of the initiatives.
Jeff Keller, Deputy Director
Muriel Shepherd, Founding President
National Alliance for the Mentally Ill of New York State
My name is Jeff Keller and I am Deputy Director of the National Alliance for the Mentally III of New York State (NAMI-NYS). With me today is Muriel Shepherd of Ulster County, who is our Founding President and Chair of our Government Affairs Committee. NAMI New York State represents 5,000 members and 58 local affiliate organizations throughout New York State, the vast majority of whom are members of families that have a loved one with a serious mental illness.
Our families have a major stake in the future of New York State's system of mental health care. Many of them provide the principal case management, counseling, housing, socialization and transportation for their loved ones. Usually they provide these services by default, because little else is available. They have strengths that should be developed, weaknesses that should be mitigated, needs that should be met and limits where someone else should take over when they are reached. Our families would like very much to participate in an integrated system that would take these factors into account. Meanwhile, they do the best they can with what they've got.
Our families deal with the practical reality of the mental health system everyday. While they see a few heartening trends, overall, they see a system that is losing ground. If anything, their stake in the system is growing as services get harder to obtain.
While most professionals can expect a relatively short relationship with a particular individual, depending upon where they are in the system, our families take the journey with their loved ones through the whole continuum of care. I would like to take this opportunity to give a brief account of what they have seen on that journey.
Community Hospitals
We would like to start with the front door, which for most of our loved ones is the front door of a hospital emergency room. It is harder than ever to get through that door. In many places, you won't be admitted unless you are suicidal, and even then, you still might not get in. It is not a rare occurrence for people to kill themselves after being turned away from the emergency room.
If you are fortunate enough to be admitted, you might not get to stay for very long. Where average psychiatric unit stays used to be a month, then two to three weeks, they are now three to ten days. This is often not enough time to determine whether any medications administered are actually working. Stabilization is becoming a lost art in our acute care wards, and the prerequisite to recovery is stabilization.
Why aren't people being admitted through the emergency room? Medicaid utilization review. Why are they often released prematurely? We understand that Medicaid pays a lump sum per discharge, no matter what the length of stay is. There is no incentive to treat people until they are better. This is a growing crisis that is only going to get worse. Somehow, a way must be found to address it.
State Hospitals
If the only assistance that can possibly help someone is intermediate or long-term care, then the question becomes whether he can get into a state psychiatric center. Even if he is at the top of the list, he can still be bumped by court-ordered forensic cases, including sex offenders. A wait of several weeks or months is routine.
While the accessibility crisis at our acute care clinics is driven by insurance formulas, the crisis at the state hospitals is a matter of capacity. We are now well below the 4,400 beds that is considered a safe minimum. Without accurate waiting list data, the actual extent of the shortfall is hard to determine, but its impact is very real, and with Generation X's coming of age, the situation may be getting even worse. While we agree that some of the 17 remaining "general" psychiatric centers may need to be consolidated, the number of overall beds should be increased.
In order for the rest of the system to function well, intermediate and long-term care must be available for those who need it. Other programs are set up to fail if they are forced to take individuals who need but can't get this higher level of care.
An idea to consider is to also provide it in community as well as state hospitals. In this context, we are very interested to see what impact the consolidation of the Middletown psychiatric hospital beds into the Rockland center will have, and also to see the process that will determine how the promised reinvestment money for the area will be spent.
AOT
Another level of care that must be provided to those who need it is Assisted Outpatient Treatment. Not only has AOT been shown to work, it has had a dramatic success rate interms of reducing hospitalizations, incarcerations and homeless for those it has served. It should have been made permanent. Sun-setting the law again is a disservice to planning and stifles further implementation and improvement. People don't invest in such things if there is an expiration date.
PROS
On the outpatient level, PROS is the object of great hopes and perhaps even greater fears.
According to OMH, PROS will not only create savings by cutting state program expenses in half, it will generate more revenue for the community programs involved. OMH also says that PROS will create a more flexible, less fragmented system for PROS recipients that promotes the "ABCs," Accountability, Best practices and Coordination of care.
We respect the ABCs, which OMH says are the principles that form the basis of its planning. Given the current state of our system of care, these principles, properly applied, are as revolutionary as Liberty, Equality and Brotherhood were to 18th Century France. It is our great hope that PROS will be a vehicle for positive systems change in the way that OMH has indicated.
It is our great fear that obtaining Medicaid revenue will become the overriding "service" offered by PROS. That fiscal eligibility will take precedence over need and that generating billable hours will take priority over serving recipients. That instead of "reaching for recovery," the providers of these community services will reach for the regulations.
Of particular concern to us is the fate of consumers who are not eligible for Medicaid. While OMH says that revenue margins will be enough to accommodate them, the fact remains that the providers will make a greater profit if they do not serve them, or more than a few of them. Some counties have reported that 50 percent of their consumers with serious mental illness are not eligible for Medicaid.
Whether PROS works or not is critically important to community services and to recovery. PROS outcomes should be formally laid out and revisited, with measures of success or failure. To create more revenue to run the system, OMH is constructing a system as complex and fraught with risk as a nuclear power plant. Some fear a meltdown. Particular attention needs to be paid to it.
Also, it would be nice to know what the impact of the Medicating of certain outpatient clinics through the COPS program has been, and whether this transition has resulted in better care for persons with serious mental illness.
Housing
Safe, affordable, permanent housing is the foundation stone for recovery for people with serious mental illnesses. The need is immense--in the tens of thousands for those leaving psychiatric centers, for those leaving prisons, for those living in questionable adult homes, for the homeless living in shelters and the streets, and for the more than 45 percent living with their families because there are no other alternatives.
New housing units established by Governor Pataki now total 31,000, making it possible for 13.7% of the estimated 250,000 New Yorkers with serious mental illness to have state assisted housing. Neither the OMH 5.07 Plan for last year nor the one for this year projects any further housing expansion. This is doubly unfortunate as doing the right thing -- expanding housing -- can be cost-effective and save money used by emergency rooms and hospitalizations. We must continue to build new housing at a steady pace or we will completely lose control of this crisis. OHM should also do as much as possible to encourage housing, and the financing of housing, from other sources. It should take steps to develop a model housing agreement with the state housing agency which can then be passed on to localities to use. Partnership between the local housing authority and the local mental health authority should make it possible to find more Section 8 housing. Support services are also needed for people living in Section 8 housing.
One more thing: Permanence as well as affordability, is important. We agree with the National State Program Directors, that services can be changed as individual needs change, but housing should remain permanent.
SPOA
One cannot mention housing today without touching on the Single Point Of Access process, better known as SPOA. This process was originally put in place as an accountability measure, a way to insure that serious cases do not fall through the cracks and get the case management and housing they need. The counties were given a great deal of leeway in how they implement SPOA, and, as one would expect, it varies in effectiveness depending upon where one lives. A SPOA dream would be saving someone's life by making sure he has the proper services. A SPOA nightmare would be having someone kill himself while waiting for a SPOA committee to meet and decide what to do with him.
SPOA committees have the responsibility to determine who should have priority in receiving case management and housing. As in any system of care, those who are the most ill and most in need have the greatest priority. This is the way it should be. Unfortunately, services are generally so scarce that prioritizing means rationing, with SPOA as the gatekeeper. The process is being keenly felt by those who are waiting for housing, and it may be a disincentive to finding creative solutions to the housing crisis.
Many of our families would consider having their own homes turned into mental health housing with services upon their passing if they could be sure that it would provide a permanent home for their loved ones and if they could control who else would come in to live with their loved ones. Currently, all mental health housing in New York State is temporary, with no guarantee how long someone might stay. Also, because of SPOA, there would be no control over who else would live there. They would have to take whoever SPOA tells them to take. NAMI New York State would like to do its share of alleviating the housing crisis and pursue a family housing initiative. But such an initiative wouldn't work without an exemption from SPOA.
Parents in our families constantly express fears that their own death will leave their son or daughter homeless, institutionalized, inadequately housed or without adequate community supports. This "aging out" problem has been recognized in reports and articles since 1988, but it is still unaddressed. There is still no place on the SPOA priority list for persons whose caregivers have died.
Forensic Services
Let's now turn to what may be referred to as the other front door to the system: The jail door. OMH's involvement in the development of mental health courts has been vital and is greatly appreciated. The Central New York Psychiatric Center provides competent care and treatment to inpatients; the Intermediate Care Programs provide decent care to persons in the level I facilities and the CORP program is an excellent example of providing discharge planning services. Further, the additional $7 million in the 2005-2006 budget enables the department to expand its level of services, as well as to establish the Behavioral Health Units and the 102 BHU beds at Great Meadow and Sullivan.
Unfortunately, many problems persist in the OMH system of care for persons with mental illness in the justice system, some of which are in the purview of the governor and the legislature, while others are clearly within the domain of OMH to address, or at least, to prioritize.
Diversion to What? As ardent supporters of mental health courts, we cannot overlook the fact that treatment alternatives, especially residential treatment options and housing, continue to present major obstacles to developing treatment alternatives. The general lack of effective treatment resources in the community is only exacerbated for criminal justice ¬clients. This is especially true for our MICA population, which represents the overwhelming majority of clients in local courts and for whom integrated residential treatment options are only a dream. This is all the more disturbing when one notes the virtual abundance of residential drug treatment beds for persons coming out of drug court.
Lack of Inpatient Beds. The 189-bed capacity has not changed in 25 years despite a 70 percent increase in the DOCS population. We continue to see far too many persons with a mental illness rotate in and out of CNYPC. In one case, a person in DOCS for nearly 13 years has been committed to CNYPC 20 times. A 2002 report stated that 65 percent of persons discharged from CNYPC decompensate and are re-hospitalized. OMH must recognize that CNYPC is a hospital, the likes of which cannot be emulated in a prison. It is our very strong sense that there are legions of persons with a mental illness who cannot handle the regimen of prison and must be permitted to spend longer stays in a hospital setting.
Insufficient Staff. According to a recent Correctional Association report, mental health caseloads have risen some 71 percent since 1991 and mental health staffing has not kept pace. According to the Association, the system-wide vacancy rate was approximately 20% a few years ago, and the rate among psychiatrists was 35%. Our experience with working with these professionals on a daily basis is that staff shortages continue and that turnover is much too high.
Lack of Treatment. Persons with a mental illness living in the general prison population receive virtually no treatment aside from psychotropic medication and brief consultations with mental health staff. They are essentially left to fend for themselves in an unfriendly environment that often puts them at risk. There is clearly a large population persons who could benefit from additional ICP beds as well as access to solid mental health therapy.
Over-representation of Persons with a Mental Illness in Special Housing Units.
Persons with a mental illness continue to account for over 20% of the SHU population systemwide and upwards of 60% in level I facilities. Such persons also appear to serve particularly long sentences in SHU, often running several years. We recognize that OMH is not able to act unilaterally to alter the system of treatment for this population. However, it seems that each time there is an opportunity for progress in this area, as there has been on several occasions arising out of court litigation -- as there is now -- the resulting option seems directed primarily by a continuing need to punish, and only secondarily to treat the illness.
Insufficient Discharge Planning. While the CORP program represents a model discharge planning program, it only contains 30 beds and deals with just over 100 persons per year. The overwhelming volume of discharge plans occur at the facility level, where pre-release coordinators assisted in 1,800 discharges last year. Some 3,000 persons with a mental illness are released annually, and OMH remains unable to assist in the other 1,200 cases. Frankly, our experience with discharge planning has been very disappointing. It should be noted that most pre-release coordinators do not reach out to the families, if at all, until it is the eleventh hour.
Lack of Family Involvement. While OMH has properly identified the family as a critical part in fostering recovery, this priority and sentiment does not appear to have found its way into the forensic services system of all of our state correctional facilities. Apart from the experiences which the NAMI office has recorded over the last few years, we are regularly receiving messages from families around the state about the "family-unfriendly" attitude of many mental health staff persons. While some staff persons are a pleasure to work with and are eager to cooperate with families, this sentiment tends to be the exception rather than the rule.
Accountability
Taking a step back, there is an overall problem: Throughout the system, the gap between what is real and what is on paper is beginning to grow wider. Besides funding issues, accountability issues are the major reason for this problem. As long as the system is focused on paper "units of service" for reimbursement, rather than on whether people are being well-served in a timely manner, there will be a crisis in mental health care, and all the planning and money in the world won't make any difference.
Holding people accountable means making sure they do their jobs with a degree of competency. In order for this to happen, standards must be created, so people will know what they are responsible for. The standards then must be enforced.
Not only individuals, but the system itself must be accountable. Our white paper on Assisted Outpatient Treatment found that the quality of treatment depends upon which county one resides in -- whether the providers in that county choose to interpret it in a meaningful way. In the white paper we called on OMH to ensure that localities carry out the law. Our families need a reliable entity to appeal to when their local programs fail to do their jobs, when they decline or simply fail to help, or to correct serious mistakes. These things happen in many other circumstances besides AOT. Such cases should be reviewed, and when the situation warrants it, local programs should be directed to take specific actions. We look forward to OMH's continued leadership in this matter.
Standards are needed throughout the system, from crisis services to rehabilitation services, from peer support to SPOA.
Accessibility should be treated as an accountability problem. In Clinton County, for example, a mother whose daughter was suffering from clinical depression was told that it would be 52 days before she could get an intake appointment, an additional 25 days before she could start therapy and another 21 days before she could see a psychiatrist. Clearly this is a systemic failure, but without an accessibility standard, it doesn't count as one. If accessibility standards were in place, perhaps we wouldn't have to spin our wheels so much about doing needs assessments. In theory, at least, capacity would have to be adjusted to maintain the standards.
Funding
The Office of Mental Health's 2005-2009 is a thorough and impressive compendium of OMH's many programs and projects. As an annual report, it ranks with the annual reports of the top companies and agencies in the country. As a plan, however, it falls short. It lists goals and sub-goals, but it does not present specific objectives to be obtained by 2007 and 2009.
We think a major reason for the plan's lack of timeframes is financial. It is hard to say that something will happen within a certain time when funding is not certain. The plan is clear about this when it addresses the state's "structural budget imbalance and the need to evaluate strategic objectives against fiscal realities."
According to the plan, "initiatives to reestablish or maintain the structural and financial integrity of existing service providers and capacity take precedence over program expansion." In other words, we've got to hold on to what we've got.
The truth is funding is in short supply for virtually all services, and this accounts for much of the current upheaval in the mental health care system. Local mental health departments are not only under extreme pressure from the counties to keep their costs down, they can no longer count on state Community Support Services and reinvestment funding, much of which is in the process of being converted to PROS funding. For non¬-Medicaidable community services, the situation is particularly dire. Not only are they not getting any new funding, previously allocated funding has been cut, with more cuts in the offing. Non-traditional but critically important programs such as clubhouses, peer and family advocacy, innovative vocational programs, affirmative businesses, psychiatric rehabilitation and transportation programs are at stake.
Planning in this context means planning how to make do with less. Above all, it means prioritizing, to the extent that is possible. Accurate needs assessments and input from the local advisory committees such as local Community Services Boards and Mental Health Subcommittees would be very helpful under these circumstances. Unfortunately, few counties see it that way. The counties have always relied on the local planning process to varying degrees, and now that the question is about maintaining services instead of creating them, they rely on it even less. The office of mental health should promote an overhaul of the county advisory committee process to insure that those committees are a viable part of local planning no matter what happens in the future.
The way the system has reacted to increasing scarcity explains many of its shortfalls in planning. Plans are curtailed to fit available resources. If only needs could be curtailed to fit the plans. But needs can't be curtailed except through sufficient services. The individual who does not get what he needs does not go away, and oftentimes pops up in other systems, such as the criminal justice system.
The solution to increasing scarcity, of course, is more revenue, and, according to the plan, "The agency recommends proceeding on a course in which continued redirection of savings and new investment in 'these planning priorities take place as fiscal realities allow."
The only ready revenue solution is a new reinvestment package, through which the savings from switching programs to Medicaid are put back into the system. Because the future of Medicaid itself is now uncertain, an alternative funding stream should also be developed. Because one of the system's most dire needs is new housing, we propose that raising the state estate tax be considered. Connecticut did this recently to balance its budget as some 19 other states have with the recent elimination of the federal estate tax. It is reported to be more rewarding than California's "millionaire's tax."
Overall Planning
What our families want to see are real services provided according to enforced standards of quality that insure the best outcomes. They want to see a balanced service, system where care is provided according to need, including the needs created by multiple disabilities and complex personal situations.
In order to realize such a vision, NAMI-NYS has called for a comprehensive, over¬ arching, needs-based, multi-agency plan. Such a plan would be a map for the journey from the way things are now to the way they should be. The recommendations of the Assembly Mental Hygiene Committee Task Force's report, "An Evaluation of the Delivery of Mental Hygiene Services in New York State," would facilitate the making of such a plan. We hope OMH will give serious consideration to these recommendations.
There is a condition that should be stipulated, however, for the kind of planning framework that is recommended. OMH must retain its responsibility to set its own goals and objectives, plan its own programs and create its own initiatives. We are impressed that OMH has come up with some innovative solutions to the problems at hand, such as PROS, population-based planning and a new public health approach, beginning with suicide prevention. In-house creative problem-solving must not be impeded in any way.
Public Health Approach
Before closing, I would like to say a few words about OMH's newest initiative, the public health approach, and about research, which really is our hope for the future.
Combining public education with screening has a profound potential. It could save lives and futures. Screening for depression can prevent suicides. Early intervention may be crucial in heading off schizophrenia. It could provide a better picture of actual need and also deliver a message: Mental disorders are diseases, and they can happen to anybody. Nothing would be more effective in fighting stigma.
Funding for this new approach must not be diverted from existing programs, however. It simply wouldn't be fair to all of the programs that are already under siege. A separate funding stream is needed.
Research
We are pleased that the OMH comprehensive plan recognizes the outstanding work of its two world-class research institutes, the Psychiatric Institute in Manhattan, and the Nathan Kline Institute in Rockland County. Truly vital work is now being accomplished, work that can revolutionize how we treat mental illness, such as the discovery of glycine's potential to treat schizophrenia. We hope the state continues to invest in these financially productive institutes, for they offer solid hope in understanding brain disorders, in finding better treatments; and in eventually finding cures.
We were also delighted that OMH had the wisdom, commitment and insight to hold a Children's Research Symposium in June. Conferences of this kind are very valuable to family members, consumers, and professionals alike. It is a very important tool to disseminate important research findings and data to the "mental health community at large" --- information that some might not, otherwise, be aware of.
We look forward to continuing our collaborative efforts with OMH to afford researchers the tools, support, and opportunity to address the complex and devastating issues of serious mental illnesses. Together, we know we can make a difference.
Leadership
Throughout this presentation, I have touched on some of the more daunting challenges that confront the mental health system. I haven't gone into much detail about this year's comprehensive plan and many of the other issues it addresses.
One very important point that we get from the plan, and from OMH in general these days, is that leadership is alive, well and growing throughout this agency. We sense a renewed determination to take on the ongoing challenges to mental health in creative ways. Putting aside the details, we are encouraged by the spirit of this plan and of those who created it. We look forward to their continued leadership in the days ahead.
Thank you for the opportunity to present this statement.
Isaac D. Rubin
NAMI Mid-Hudson
Good afternoon. My name is Isaac D. Rubin. I am here on behalf of NAMI Mid¬-Hudson, an advocacy group dedicated to improving the lives of all those affected by mental illness. Our membership includes people diagnosed with mental illness as well as their families and friends. We are an affiliate of the National Alliance for the Mentally III of New York State (NAMI-NYS) and the national NAMI with over 200,000 members nationwide. I am the president of NAMI Mid-Hudson and a past president of NAMI-NYS.
We are pleased by the opportunity to participate in the discussion of the 2005-2009 Statewide Comprehensive Plan for Mental Health Services. We at NAMI are keenly interested in OMH plans and have followed the OMH planning process as it evolved throughout the years. We find this latest plan more comprehensive and detailed than similar plans issued previously.
In the May 23 Notice of Informational Briefings and Public Hearing on the 2005-2009 Plan OMH indicated that it was particularly interested in obtaining input on the goals and objectives it presented in Chapter 9 of the plan.
The plan presents 7 main goals. Prominent among them are: improvement in the mental wellness and resiliency of the population, improved quality of mental health services, increased accountability, improved treatment outcomes, and increased access to effective and appropriate services. While these are all highly important, not once was the word "recovery" used.
For us, families and consumers, there is only one ultimate and overriding goal and it's called RECOVERY. The goals presented in the report are really means or steps leading towards this ultimate goal of recovery.
To achieve recovery, or even strive towards recovery from mental illness, it is necessary to consider all aspects of a person's life, not just the mental illness in isolation. This includes a life in the community, safe and affordable housing, a suitable part-time or full¬time job or volunteer activity and the necessary transportation. Not one of these issues-¬all long-standing and intractable problems in the Mid-Hudson Area and throughout the state--is mentioned.
For NAMI, housing, employment and transportation are all high priority issues of long standing. In fact, in Dutchess County the need for low cost housing with suitable support services has reached crisis proportions. Housing is needed at all levels: transitional beds, supported housing, group homes and Section 8 housing.
One example: The 2005 Local Governmental Priorities for Adult Mental Health Services in Dutchess County call for an increase in supported housing beds by 72, long term transitional beds by 24, and various specialized beds by 13. Supervised housing and independent beds are also needed for transitioning out young people, 16 to 21, and for families with SED children. Unfortunately, it is highly unlikely that these needs will be met anytime soon.
Another example: In the last 2-3 years, several proprietary community residences in Dutchess County have closed, reducing the number of adult beds in the community by over 70. So far, these beds have not been replaced and it’s unlikely they can be replaced in the near future.
When we consider housing for people diagnosed with mental illness, we also need to consider the required support services. For example, as we already pointed out in last year’s testimony in May at a similar meeting in Poughkeepsie, people living in supported housing or Section 8 Housing often do not get all the services they need. In our area, the missing services are often provided by aging parents. What will happen to these people when their parents are gone?
While we know that OMH is gradually increasing housing opportunities for people with mental illness, we believe that this effort is way too small and totally inadequate to meet the needs. We suggested last May that OMH convene a task force to study both immediate and long-range issues relating to community-based housing and related support services and work on improving the situation as a major priority. NAMI Mid-Hudson continues to advocate for this idea.
The very low level of employment by people with mental illness and the lack of substantial efforts by OMH to remedy this situation is an issue, like housing, that requires much greater emphasis. It is estimated that only 15% of people diagnosed with serious mental illness have jobs.
NAMI Mid-Hudson believes that integration into the community and participation in family life and community life are part of the process of recovery. Appropriate full-time or part-time jobs, for those who want them and can handle them, are an important aspect of recovery.
We strongly recommend that OMH put more emphasis on jobs and adopt the best practices available in the country to increase the percentage of people with mental illness employed in New York State. We would also like to see OMH work more closely with other agencies such as VESID and Social Services to eliminate some of the financial and other obstacles that now stand in the way of work.
Like housing and jobs, affordable transportation is another very important issue, particularly for people living in rural areas such as the Mid-Hudson region. While we nonetheless, like to encourage OMH to work with counties, other governmental agencies and nonprofit organizations to provide more easily available transportation to medical appointments, jobs, shopping and recreational activities for people living in the community.
Another area of concern in Dutchess County is the shortage of psychiatric beds in local hospitals. Last year we testified that more beds were needed at the Hudson River Psychiatric Center (HRPC) and asked that the current cap of 120 be raised to 150. This year we would like to add that while a shortage of beds at HRPC continues, there is now also a shortage of acute care psychiatric beds at St. Francis Hospital. About 20 patients are transferred out of the county each month because the psychiatric units at St. Francis are filled. At this time, St. Francis does not plan to add any psychiatric beds.
More detailed planning is required by OMH to understand better the various needs for mental health services in the communities and separate community needs from projections for the state as a whole. Hospital beds are a prime example. The inexorable stress on hospital downsizing without adequate examination of the needs in the various communities may be part of the cause of the shortage of hospital beds in Dutchess County.
Example: A useful performance indicator for a sufficient number of acute care hospital beds in Dutchess County would be the number of people in need of such beds who have to be moved out of the county per week because of a lack of beds.
Performance indicators should be selected rigorously to measure services that are important to the patient and the family. In general, we find the performance indicators listed in the OMH plan too vague and indefinite to be good outcome measures of the ideas or services being discussed.
Example: The performance indicator to "improve the quality of mental health services currently available to adults with SMI and children with SED" is the "number of ACT enrollees per 1000 adults with SPMI" and "number of agencies and county mental health authorities using the Child and Adult Integrated Reporting System (CAIRS)." While many people may enroll in Assertive Community Treatment Teams and many agencies may use CAIRS, we cannot assess the value of this for the people being served. NAMI Mid-Hudson would like to see the performance indicators people-centered and clear in terms of benefits to the people being served.
Our comments above reflect some of NAMI Mid-Hudson's concerns about the mental health services in our state and our county. Today, the OMH planning process is more transparent than it has been in the past and the quality of its planning document has been steadily improving over the last several years; this allows us advocates a better look into OMH activities and gives us a stronger and more coherent platform for our advocacy. Our comments today reflect this.
We hope that our testimony today will be utilized by OMH to formulate its programs and that our concerns and recommendations will receive serious consideration.
Thank you.
Michael Johnan
Dear Commissioner Carpinello:
I had the opportunity to attend the New York State Office of Mental Health, Hudson River Regional Briefing on the Statewide Comprehensive Plan for Mental Health Services on Friday June 24, 2005. It was during this meeting that I experienced first hand some of the feelings family members have shared with me over the past twenty-five years. When I requested that OMH consider ways of infusing family voice into multiple levels of planning, implementation and evaluation protocols, the response that I received felt patronizing. The OMH representative and county commissioners responded to me as if my comment was indicative of a personal struggle not a system-wide need. One county commissioner even offered to help me voice my concerns to my home county administration. At this point in the discussion Mr. Simons affirmed that the State Office of Mental Health is taking its direction from the county commissioners.
Family and consumer partnership is conspicuously missing in the OMH Strategic Plan. There is no clearly stated goal for including consumers and families in the system-wide planning, implementation and evaluation of recovery services designed to improve their quality of life. It appears that the State’s plan is based solely on the “professional” perspective of what one’s life should be rather than what each individual wants for her/himself.
Dr. Jane Knitzer’s 1982 ground-breaking report Unclaimed Children: The failure of Public Responsibility to Children and Adolescents in Need of Mental Health Services was a wake up call to the mental health community to view and involve families and consumers as partners. In the last two decades, families and consumers have struggled to empower themselves and strengthen their roles in the care of their children and in their own care, respectively. Achieving effective partnerships has proven to be one of the major challenges for those attempting to implement systemic change. Karp defines collaboration as “the recognition that both [or all] parties have special skills and knowledge that can contribute to the job of improving programs and services which will benefit the consumer.” Collaboration requires bringing consumers and families to the table with providers and administrators as equal partners in the process.
For recovery to take place, the culture of mental health care must shift to a culture that is based on self-determination, empowering relationships, and full participation of mental health consumers and families in the work and community life of society. To build a recovery-based system, the mental health community must draw upon resources of people with mental illness, families and their communities.
I am proposing the following goal and objectives to be added to the OMH Strategic Plan.
Goal 1: Establish family and consumer collaboration at all levels of planning, implementation and evaluation.
- Ensure a minimum of 25% of the decision-makers in the OMH strategic planning process are non-employee family members and consumers prior to publishing any further documents.
- Ensure that membership on family and consumer councils and committees is representative of the population OMH serves,
- Develop a statewide, family-driven and family-run agency that provides ombudsman services to all OMH programming including investigations.
- OMH will include a family/consumer partner for each 20 people a program serves.
- OMH will assist current family and consumer support programs in acquiring independent funding in an effort to have them become self-sufficient.
- OMH will provide training to all of its programs in consumer/family empowerment.
- Provide ways to improve access to and sharing of relevant information between state networks and organizations.
- Increase meaningful opportunities for and capacity of mental health consumers and families to advocate for and participate in legislation, and policy development, implementation and evaluation at all levels.
- Identify best practice, protect human rights, highlight deficiencies and influence positive systemic change for the recognition and benefits of Consumer and Family participation at all levels.
True collaboration requires more than consumer feedback. We must recognize and honor the expertise of consumers and families. Achieving the OMH vision of recovery, hope, excellence, respect and safety will require an unprecedented level of partnership with families and consumers. This vision will not be realized until families and consumers are sitting at the table as equal partners with the system experts. It is my hope that this will become a reality in my lifetime.
Comments or questions about the information on this page can be directed to the Office of Planning.