2005-2009 Statewide Comprehensive Plan for Mental Health Services
Western New York Region
Rochester Psychiatric Center
June 7, 2005 5.07 Testimony
- Heather C Laney, Mental Health Systems Advocate
Mental Health Peer Connection - Mary Skorupa, Executive Director
- Patti DiNardo, Parent and Director
Finger Lakes Parent Network Inc. - Lisa Michaelsen
- Sharon E. Hoffman
Heather C Laney
Mental Health Systems Advocate
Mental Health Peer Connection
Thank you for allowing me to testify about the Office of Mental Health’s 2005-2009 Comprehensive Plan for Mental Health Services. My name is Heather C Laney. I am the Mental Health Systems Advocate with the Mental Health Peer Connection in Buffalo, NY and am here today to represent the concerns of consumers in Erie County.
In this testimony I will attempt to answer the question “What are the specific initiatives which should be emphasized within the goals and objectives over the short term and long term planning horizons?”
In goal #1, “Improve the mental wellness and resiliency of all New Yorkers through an effective public education function,” The objective that is most important is to improve public understanding of the causes and treatment for mental illness in adults. This past March, we at the Mental Health Peer Connection held a Community Town Meeting on Employment. A concern raised by consumers attending the meeting was the public’s view of a person with a mental health diagnosis. At the meeting we asked the community what they felt their biggest barrier to employment was, since 70 % of people with disabilities are unemployed. Their responses cited the community’s insensitivity and prejudice towards individuals with a mental illness. They brought up the possibility of targeting the community of employers to employ multiple individuals with disabilities and create collaboration between businesses and agencies for individuals with a mental health disability. They also wanted job fairs to be held specifically for individuals with disabilities. Without an extensive plan for changing the public’s view of people with a mental illness and combating the stigma that goes along with a diagnosis, employment rates for consumers will continue to drop. We need to educate the public on the benefits of hiring people with all disabilities, including those with a mental illness. Recovery happens and this needs to be emphasized so that those with a mental illness diagnosis are given the chance to participate in life just like everyone else. Vocational providers and employers need to have it so ingrained that recovery happens, that it becomes natural for them to assume someone with a severe disability who comes to them can work, and be a valuable employee. The town meeting also brought up and identified the need for employers to see the consumer’s potential regardless of their background or disability. The consumers want to stop being treated like the effect of their disability. A continued campaign to combat stigma is therefore needed in order for consumers to become more gainfully employed in our community.
Another recurring theme in the goals and objectives is improving the quality of care and the people hired to work with consumers.
Goal # 2:
“Improve the quality of mental health services currently available to all adults with serious mental illness.”
The objective of “decreasing the risk of the experience of suboptimal treatment” ties into the concerns of consumers as well. In the meeting on employment, a common complaint about the vocational services provided to consumers was that the services were too much of a bureaucracy and the counselors had too high of a caseload. They wanted counselors to be more knowledgeable of the American with Disabilities Act as pertaining to employment. They felt vocational counselors believe their job is done once the consumer is placed in a job. The counselor does not see this as a starting point or even a stepping-stone to a higher and more challenging career. They (the consumers) wanted the providers to help them reach their fullest potential and not just place them in manual labor and service jobs. At the Mental Health PEER Connection we have developed a training focusing on sensitivity towards consumers with a disability, which is conducted by consumers labeled with mental disabilities. The consumers feel they would like a training to let providers know what it is like trying to find employment when you have a disability. The consumers of Erie County would like to see this training incorporated into the yearly training of vocational counselors, especially new hires fresh out of school. This goes along with the objective of improving the service provider certification process. We need to have more consumer-centered trainings written and possibly even presented by consumers.
The objective of maintaining adequate resources to ensure that high quality services can be provided is another objective that is very important. The consumers have stated that one of their barriers to employment is the cut in funding for vocational services. Without the services they have no support while trying to go back to work. They feel the effects of these cuts in the amount of resources for transportation, start up expenses for someone just getting off the ground, and the general amount of time a provider has to work with the consumer.
In Goal number 5, “Improve outcomes for adults with serious mental illness through use of proven effective treatments,” The objective of increased use of underutilized services known to be effective pertains to the use of peer services. The Mental Health Peer Connection’s JOB Club is evidence of the effectiveness of this underutilized service; mainly peer support, when it comes to employment. At the Job Club we have a staff of peers who help support consumers attain their vocational goals. We have an attendance rate of around 87 people a month with 25 coming on Thursday nights for the Networking Group. Of last year’s total of 104 people, 48% obtained competitive employment for three or more months as documented in the goal indicators. These are above average employment rates for this population, whose general average of employment is less than 30%. The population served are the severely, persistently mentally ill consumers who find themselves homeless or in continuing day treatment programs. So as you can see, this often-underutilized service is invaluable in keeping consumers employed, integrated in the community, or transitioned from institution to community. We need to ask why this service is not a key component of the comprehensive plan.
Another Town meeting the MHPC held this year was on housing. We had some consumers attend this meeting who are in the Single Point of Entry program for care coordination and housing services. As the objective says, we need to improve services for this population yet at the same time we need to emphasize the continued movement towards independent living for these consumers. I am a mental health consumer who was in intensive treatment such as SPOE and am now a homeowner. Recovery happens, as it did with me and countless others. Some consumers, who also succeeded through SPOE, stated the important service that aided in their success under the SPOE system was the ready availability of someone to help out with budgeting, independent living skills, and support. Why can’t we have a system of care that really focuses on going from “entitlement” to “empowerment”? At the Town Meeting we discussed homeownership with consumers and what the barriers are to this dream. Many of these consumers wanted to take the big leap to independent living by being totally integrated into the community in their own home. They said the OMH Home of Your Own program was a great opportunity but needed to have more accessibility by having all banks participate. They also cited wanting to have a pass plan with social security towards the expense of owning their own home. The consumers were finding it difficult to get a loan for a small amount. Instead of stagnating consumers within a system of subsidy, and support that keeps them excluded from the community, we need to be working on giving the consumers intensive support towards the goal of owning their own home. We need to teach them the skills, give them the hope, and make a reality of this all too often overlooked American dream.
The last town meeting we held was on PROS. This ties in with objective 5:5, improving access to services with the potential to help individuals achieve success in living, learning, working, and social environments. This is where we are headed into a new system with new possibilities as well as new implications. The consumers are aware of those implications. Some consumers feel it is a financial strategy driven by saving money versus a system being driven by a service and person centered standpoint. They also feel their choices are being compromised. They feel there is a potential to violate rights under PROS. For instance, some consumers are being told where they can and cannot attend social clubs in Erie County because some do not fall under specific networks of services. They feel this system puts the power back into the hands of the provider and does nothing for empowerment. They have had no training on PROS and want there to be a better effort of including consumers in this process. The consumers not on Medicaid are concerned about not getting access to services because of their inability to pay. As we go into PROS we have to make it a partnership between peer/consumer and provider. We have to keep everyone in the loop and ease the worries and concerns through knowledge and information of all involved. We also have to make sure services have easy access regardless of ability to pay.
In conclusion, what OMH needs to do is help the Mental Health system focus on recovery, and integration into the community at large, not the community of mental health providers. Consumers want inclusion in the workforce, housing, and recovery-based treatment.
Thank you for taking the time to listen to this testimony and to the concerns of consumers in Erie County.
The Inescapable Importance of Families Helping Families
The Children’s Mental Health Coalition of Western New York, Inc.
Mary Skorupa
Executive Director
I want to touch briefly on some of the very basic components of Family Support that help to make this movement an invaluable resource for family members, service providers, service systems, and educators, indeed all those interested in the health and mental health of our youth in general, for those youth who are suffering with emotional, behavioral or social issues, whether within a system of care, or unidentified and struggling alone, are the responsibility of us all.
Family Support in its role as community educator addresses the needs of all youth and families. Education regarding the issues faced by today’s youth and how they affect mental health and happiness within a child and family’s daily life helps our communities, whose members, after all, are these children’s neighbors, relatives, friends, and associates, to recognize and understand youth with complicated mental health concerns as well as those who may need a temporary “hand up” during times or instances of unusual difficulty.
In its role as family educator, Family Support assists families in becoming active, informed decision makers on behalf of their family and child. Believe it or not, as I was writing this testimony, I received a phone call from a family member of a young man being treated for depression. This young man was expressing a bleak hopelessness that only his mom was taking seriously. She was concerned about the possibility of suicide. She was also about to give birth to her fifth child and terrified about what might happen to her son while she was in the hospital. Aside from linking this mother to a family support program in her county, we brainstormed about what steps she could take now (such as: making sure the attending psychiatrist knew of her concern and the reasons for it – talking to her son about her concern – talking to her husband, her son’s stepfather, about her concern, removing anything obvious that might assist her son in a suicide attempt such as medications, weapons etc.) and what steps she could plan for the future should a crisis occur. We actually made a list together over the telephone. I once made such a list for my own son.
What will happen to this young man as a result of his mother’s phone call to a family support provider? I only know, that at the very least I hung up the telephone with a mother who was re-energized by a conversation and a piece of paper with a plan she made for herself and her entire family. She no longer felt as though her son’s life was her responsibility alone. She would share that responsibility by explaining, in concrete terms, her fears for her son to those who also shared concern for his wellbeing. The resulting relief allowed her to draw up a crisis plan to follow should the worst happen – a plan that she also hoped to share with family members. She discovered a small bit of new strength and feeling of competency that she hoped might be shared with her son. And she is now linked with a family support program capable of providing good, solid, practical information and true support on an ongoing basis.
Submitted Written Testimony Only:
Patti DiNardo – Parent and Director of Finger Lakes Parent Network Inc.
Thank you for the opportunity to comment on the 2005-2009 Statewide Comprehensive Plan for Mental Health Services. As a parent and provider of Family Support services, I appreciate the New York State Office of Mental Health’s commitment to involve families in all aspects of service planning and delivery.
I have been actively involved in Family Support Services since 1990. In the past fifteen years I have witnessed a heightened awareness and appreciation of these services by families, agencies and the community. The practice of matching individuals with others who have experienced similar challenges has proven to decrease stress and stigma and increase engagement in services.
As other services have been developed, Family Support Services continue to be an integral partner in the continuum of care. Services such as SPOA, ICM, CCSI, Waiver, and Common Sense Parenting classes all utilize the services provided by Family Support Programs in order to meet the complex needs of families.
As funding cuts occur, it becomes increasingly difficult, if not impossible to continue to meet the needs of families currently involved in our program while continuing to do outreach to un-served families in the community. When the Office of Mental Health provides funding to Family Support programs they are investing in one of the most cost effective services available to families.
As one County Director told his Community Service Board, “…no one can squeeze a dollar like the Family Support Program.” Many of these Family Support programs are parent-run and hire parents of children with emotional disabilities. As a result, our employees are highly motivated and strongly committed to support other families so that no one will ever feel the isolation and guilt that many of us felt in the years prior to Family Support Services.
Thank you for your commitment to our families. With your support our families have become empowered and their children have experienced a greater level of success in the community.
Volunteer Positions: 2nd V.P. of the Niagara County Community Services Board, Chairperson of the Niagara County Mental Health Sub-Committee, Board of Visitors Member of the Buffalo Psychiatric Center, Government Liaison, for the New York State Association of Boards of Visitors.
First of all I want to thank you for the opportunity to give testimony today. It is great to have a Commissioner of Mental Health that is interested in gaining input from the whole state. I have gained a high regard for Commissioner Carpinello and her State Wide Comprehensive Plan for Mental Health Services 2005-2009. I believe the Strategic Plan, and the enclosed Goals are terrific. I believe she and her department are right on target for the needs of the mental health care community.
As much as I agree and do as much as I can to promote public awareness of the medical foundation of" diseases that affect the brain" "Mental illness", and suicide prevention. I through experiences as a nurse, the parent of an adult child who has Schizo-affective-Bi-Polar-Borderline disease, and a now 14-year-old Granddaughter, who has Bi-Polar disease: need to address the following goals, and segments of the goals brought forcibly to my attention with in the children's' mental health care segment in Niagara and Erie Counties.
The short answer to the needs and priorities within Niagara County are the following: in Goal#2 segments 1-5. Goal # 6 in particular segments 1-3-6. And Goal # 7 seg. 1-6.
I have enclosed the following narrative to explain what is occurring in the children! adolescent segments, in Western New York, and the reasons I am so concerned for the hundreds of children and their families.
I have not only been highly involved in the struggle to get my Granddaughter adequate mental health care, but, have also contacted and requested input from Mr. Burt Marshall the director of Child Protective Services in Niagara County.
Niagara County is a very large area, with hundreds of thousands of people. The agency New Directions is the primary source of Children' mental Health services. The SPOA component was so dysfunctional Niagara County Department of Mental Health - (the Department is blessed with Toni Lech, Michael White, Jim Eikleberger, Don Metzger, and Tim Deeks )--had to take back control of the program. I had recommended the respite program there to people in real need, only to be told that no one there knew any thing about it, or even who to call to ask about it. At this writing, there is no emergency respite available, although it is still on their list of available services, pamphlet. To get my daughter Thea connected to SPOA intake, (I gave her names, and phone numbers at New Directions) I eventually had to call Tim Deeks, who gave the message to the then director. The Niagara County Dept. of Mental Health has just hired a new SPOA Co-Coordinator, and hopefully things will go more smoothly. It takes an average wait of 2-3 months with a waiting list of30- 50 children, to get any services.
Although training is given, to new employees, they are young, many single with no children, and have little concept of what it is like to live in a family with multiple children, with varied personalities, let alone with a severely ill child in the mix. Through out 2 years, 1 sat in on many of the ICM visits, with my Granddaughter, and was confused as to the purpose of the visits, as there was no real interaction with the ICM and the Child. There were 3 different ICM's one of whom, wanted to close the case because my daughter and her husband were not there. She wanted to have her home visits at 3:00 pm. Both Thea and Joel, like many other parents need to work. Courtney's medications, and physician visits are expensive, as is all of living in this time. Although the question of respite came up quite often there initially was no respite for a crisis, and then there was planned respite available, but Courtney was deemed too ill to participate in any respite program. At no time, although it was in the realm of ICM to take Courtney for a ride, to get ice cream, or just a walk, or what ever to make a connection there was no effort, to do so. It became more pressure, than helpful. After a delay in accepting the need for Courtney to enter an RTC, (by my daughter-who wanted to keep her at home, -then after several months acquiesced to the need) they handed off the packet to Thea to gather the info. With no instructions, so that it had to be done twice. Thea is an accountant and reads easily, we were both highly concerned about the many families who do not understand things easily, and would not have the help or information at hand to produce the many components of the packet. Once the packet was completed there was nowhere for her to go. There was a three-month wait for the packet to be reviewed by the Pac committee; which is the average time frame for our area. Many times it takes up to six months to place a child/adolescent.
There are a very limited number of RTF/RTC beds available. There were only two facilities that would even consider her, Baker Victory in Lackawanna and Hillside in Rochester. Mr. Marshall said that children here are being placed as far away as NYC, Elmira, and Syracuse etc. There are not enough beds, of any type. The children and adolescent article 28 unit at Niagara Falls Memorial Medical Center, is always full, and has waiting lists. West Seneca Children' Psychiatric center, and Buffalo Psychiatric Center also have extensive waiting lists.
While waiting, as Courtney and the family were living in the special kind of hell that exists, with a teenager in a rapid Bi-polar cycle; the ICM was told by her supervisor to have Thea call in a child protective report on herself In doing so, a child protective caseworker could then recommend that Courtney should be placed in the Niagara County Child Protective Diagnostic Center, which could hold her for up to 90 days. Therefore she would be out of the household; the other children would have some relief etc. However; the Diagnostic Center is only for children/adolescents without a diagnosis. Courtney has been diagnosed and under the care of a Psychiatrist since age 6. Once a child in Niagara County has a diagnosis, they fall into the Dept. of Mental Health service system.
Once they discovered that Thea would not call in a report on herself they called one in. Since they could not get her into Diagnostic, they decided, that they could get the other two children, age 9 and 12 out of the highly charged atmosphere. The two healthy siblings were terrified that they would be removed; they were dealing with enough stress. It was an incredibly cruel and thoughtless suggestion. I wondered how many times this had come to pass within families that did not know how to advocate, to refuse this, how many children had been removed within Western New York, because of lack of facility spaces. In subsequent conversations with Mr. Marshall, and a Supervisor in North Tonawanda, the comment came up that there has been a spate of people calling in reports on themselves. They were not aware of why it was occurring. It has been confirmed via family members of adolescents in Baker Victory, that parents in Erie County are being told to do the same thing. It is a disaster.
Also at Niagara County New Directions, there are three different directors, one for Preventative Mental Health, one for Residential, and one for Diagnostic. Evidently, they do not communicate within the facility, and rather, ask Child Protective about the services that are currently being given, or are needed. With three different directors, there is not only a lack of communication, but also a lack of continuity of care. It is also not cost effective, when it inhibits, rather than enhances service integration and best practice. It is also a detrimental practice, when trying to evaluate the effectiveness of the interventions utilized.
Baker Victory has been in the news through out the state in the past few weeks. There has been an alleged rape perpetrated on a female recipient by a staff member in my Granddaughters cottage. There was a sunny Friday afternoon, a little over a month ago, when all of the Staff was out side, an all boys cottage on the RTF side, a wrestling match escalated into a fight, and in a second incident, a boy was held down, while an attempted sodomy with a pool cue took place. As there was no staff there; these boys who have poor judgment, and impulse control, were allowed to engage in a life-altering event. One 16yr. Old boy with no prior aggressive behaviors, tried to call the facility for help from the Erie County Holding center, and was repeatedly hung up on. He was afraid, and had no one else to turn to, and they hung up!
The instances of poor supervision go on and on. There is a problem in the two afore mentioned facilities, with supervision. There is a seeming lack of commitment involving the staff, that better training, more stringent supervision, in the cottage areas, of not only the residents, but of the staff, and better pay, in order to keep good employees from traveling from the non-profits, when they have gained the experience necessary, to become more effective, and therapeutic employees. It takes commitment, and time and a more serious understanding of the responsibility they owe these sick and broken adolescents.
There is a need for transitional services, with adolescents aging out, and finishing programs at age sixteen, they are betwixt and between adult, and are being put into independent living situations. To go from a structured program to independent living, with no oversight is poor planning. The adolescent need help in navigating the programs available, and necessary to maintenance of optimum health and recovery.
Forensic services are necessary for this age group also. They have no counseling while awaiting arraignment, and little guidance from the court appointed attorneys, who are assigned their cases. Although as "minors" their law guardians are appointed, they have little ability to intervene in any way. It is frightening to my family and my self If lack of supervision, was the cause, of the inability of the staff and the police to investigate within a facility filled with adolescents of varying degrees of the ability to understand the consequences of their statements, it put every adolescent in the facility at risk of being involved, whether or not they even participated in the event, if another event takes place. It is a very vulnerable position to be placed in. Parents are trying to get the best help they can get for their children and the danger they are in the facility causes the family to fear for their loved one. It is a reason to not reach out for help. The facilities for all age ranges child through geriatric need the best we can give them. It is heartbreaking to have to place a family member, but fear of their safety and security while in a facility is unconscionable. They desperately need every ounce of help the state can give them.
We need more resources and more beds, more supervised housing in Eastern Niagara County, we have absolutely no 24-hour supervised housing for adults with serious persistent mental Illness.
I apologize for the length of the narrative. It is accurate, and it is the worry about the many hundreds of children, and adolescents that do not have the strong advocate, involved that I have written as I have.
Thank you.
Good Afternoon. My name is Sharon Hoffman and I appreciate the opportunity to comment on the State Comprehensive Plan for Mental Health Services 2005-2009. There are certainly many exciting aspects of this plan, especially the White Paper Initiative.
However, if we are to take a truly honest approach to providing competent mental health services in our state, we need to openly address an issue that has not been brought to the table in this plan.
"Who is served" follows standard business as usual - defining populations by diagnosis, age groups, race or ethnicity, and those in our forensic systems. But there is another population that is not currently well served that I wish to speak about - one that spans all of the fore mentioned categories and in particular, reflects on a targeted subject and goal: the prevalence and prevention of suicide.
I speak on behalf of individuals, particularly our youth but including all adults, who endure stigma, rejection, isolation and abuse, just to name a few adjectives, twenty four seven, from our society because they are different from the majority. Their names are gay, lesbian, bisexual and transgender.
One has only to check the Web to see countless studies and statistics – mounting evidence which we continue to ignore. Being identified or even the suggestion that one may be a sexual minority has severe consequences in our "Better Be Dead Than Gay" societal ideology. The Surgeon General, in his Call to Action to Prevent Suicide in 1999, cited the concern on youth suicide rates, especially of males which range upwards to 30%, related to issues of sexual identity. Suicide is not always "a complication of psychiatric disorders" as stated on Page 109 of this plan.
For those who do not commit suicide, the struggle to maintain positive mental health against the daily assaults to self esteem is too often lost. Emotional turmoil and expressions of despair become depression, addictions, "mental illness" diagnoses including eating disorders or acting out occurrences of anger and/or violence against a repressive world.
This plan does not even make any reference to or address this critical matter. I know I take a risk even speaking about these issues here today, but we must foster respect, dignity and acceptance of sexual diversity as part of what it is to be normal and human.
We cannot hope to solve the current failures of our mental health system and turn it toward recovery or foster mental health over mental illness if we do not provide open, safe, positive and affirming mental health supports and services for sexual minorities in our state and ultimate, this nation.
Thank You.
Comments or questions about the information on this page can be directed to the Office of Planning.