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December 2010 - Understanding the |
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Don’t miss the monthly Regional Events Newsletter (426 Kb) for information about events in the Hudson Valley region relevant to individuals with disabilities, their families, and the professionals working with them!
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Understanding the Mental Health System of CareBy Naomi BrickelEach quarter we dedicate a newsletter to a particular topic that affects school-age individuals with disabilities, their families, and the educators and professionals working with them. Choice of topic is generally based on timeliness or relevance of a particular issue and is often guided by questions and phone calls received from parents here in the Community Support Network at WIHD. The focus of this month’s newsletter is the Mental Health System of Care, and choosing the subject was easy. It has been coming up a lot over the phone and in conversation. Recent questions from parents have included the basics - where and how to begin and who to turn to -as well as others such as: “Do I need to be concerned? How do I know if this is a mental illness or typical teenage behavior?” In attempting to assist these individuals and families I was surprised to discover how difficult it was to find answers to seemingly simple questions. Having grown up in a home with a sibling who suffers from mental illness, and experienced the stress and emotional toll that mental health crises can have on the life of a family, I was even more affected by the these phone calls and inquires and was dismayed that it took so much digging and research to be helpful. This newsletter will not answer all the questions, but it will point you to the resources that can. It includes articles by professionals in the field and will also provide first person insights of individuals, who have successfully navigated the system. Mental health issues are stressful enough without the added variable of a system that is complex to navigate. Our hope is that this newsletter will help you or someone you know make the connections more seamlessly. Naomi Brickel is the Project Coordinator for the Hudson Valley Special education Parent Center, a part of the Community Support Network at Westchester Institute for Human Development.
Light At The End Of The Tunnel: A Parents PerspectiveBy Cathy H.When I was asked to write something for this newsletter, I realized that I had blocked out the first 10 years of the odyssey of our son’s struggle with a mental illness. It probably started 30 years ago when he was in his teens. We thought he had a problem with drug abuse – and he did; but in retrospect, we realized that he was self-medicating to mask fearful things he was experiencing in his mind. It gave him the excuse of a “bad trip”. We first sent him to a drug counselor who recommended a drug rehab in another state. I went with him because I thought he would bolt in the airport since he was very resistant to going. Two days later they called from the facility to say that he had disappeared. Our poor son hitchhiked all the way home, 2 or 3 days without money. What courage it took for a 16 year old, alone, suffering from great fear and paranoia! His behavior quickly became more disruptive, and with fear for the example he was giving his younger siblings, we told him he had to leave home. When he returned, I learned about the Crisis Intervention Team they have at hospitals and called them. It was then that we learned he was suffering with schizophrenia –a great suffering for those who must cope with it. He was in and out of hospitals and group homes over the years, but was at least, finally, a part of “the system”, which meant that he had social service and psychiatric care. The problem was that no sooner would he bond with a support team, than people would be transferred, or he would relapse and he would have to start all over. A breakthrough in our hope came with two things: finding the right drugs which would stabilize him and minimize the chaotic voices and his “embrace” of his illness – when he accepted and worked with it and gave up his anger against the “unjustness” of his circumstances. Another real turning point was the development of an ongoing long-term relationship with a psychiatrist in 2004, who is not only wonderful and supportive but has gained our son’s trust. He still meets with him once a month and periodically tweaks his medication to suit changing reactions. It has made an enormous difference. Other helpful people have been the staff at Search for Change which runs a social meeting place, the Sterling club in White Plains, and advocates for job-training etc. He has made true friends and advocates there. The National Alliance for the Mentally Ill (NAMI), both national and local provides much invaluable information that assisted us over the years. THERE IS LIGHT AT THE END OF THE TUNNEL!!! Now he is doing quite well. I am proud of him for living independently, maintaining a part time job, and being very satisfied in his marriage to a lovely woman who Cathy H. is the mother of John H. and six other children
First Person PerspectiveBy John H.I was diagnosed with schizophrenia when I was in my late teens. For years I let my illness dictate my life. No matter how hard I tried I could not seem to be able to live with this disability. The stigma and the blow to myself had an overwhelmingly disastrous effect on my life. It is so unfair to have such a humiliating and painful condition – to feel less than human and to lose all sense and purpose. I was given medication for treatment. The pills would make me feel very uncomfortable. I don’t like taking medication, but I’ve come to accept the fact that I have no choice. Why me? Maybe the doctor was the crazy one. Maybe people just want me to suffer. This is so awful. Anyway I went through life like this for a long time. I could not accept my illness. It was too much for me. Without accepting a condition or illness, there is really nothing that can be done. If you can’t accept it, how can you control or find help for it. Looking at something and pretending there is nothing wrong makes it impossible to examine it. It took a long time, but I finally got wiser and thought that I could find a more purposeful and productive life if I stopped fighting it and started dealing with it. Finally I decided to take my pills the way I am directed. Doctors aren’t crazy! They aren’t trying to persecute me either. Their job is to help with the illness and guide you to recovery. What I’m talking about here is compliance. I am not a doctor and I do not know more than them. We’re supposed to work together to find some answers, to curb the symptoms, and try to alleviate the crippling effect of the illness. Pills aren’t the only hard part in complying with your treatment. There are a lot of do’s and don’ts. For instance, alcohol and street drugs are extremely dangerous for me. They make symptoms worse and the medication makes their effects much more powerful. Also they make the good effects of the medication much less. Form good and healthy habits. Try to tell your doctor what’s going on as much as you can. This is what I have learned. Don’t be afraid of yourself and don’t be afraid to be yourself. I tell myself this all the time. It’s never too late and there’s always time left. Be strong and build your life again. Learning from others is also very important to me. Also learn from yourself. Look at what you’ve been through to help you work towards where you’re going. The next thing, which is extremely important to me, is support. Find the right friends – good ones that are working and putting effort into their own lives. I try hard to do the right things and to keep myself on a stable path. Having friends is part of life and friends can be very supportive. Work together with a treatment team. Hold your family close to you. Have a high regard for them and think about what their expectations are for you. Family support is so powerful and so therapeutic. Not having good bonds with siblings or parents will make life more difficult. The stronger the bond with family members, the better. To sum everything up, I am currently at a job I’ve held for over three and a half years – part time and sometimes more. I have gotten married to a lady who is also disabled. We’ve been married for over a year and a half. We live in a one-bedroom apartment. I am part of a beautiful family who treat me respectfully and kindly. My wife and I spend a lot of time with my family and our friends. I’ve had a couple of minor setbacks but bounced back even better. So if you think there is no success for mentally ill people, you should think again. If you can alleviate symptoms and work towards productivity, there is a path to a brighter future. Take advantage of every opportunity you’re presented with. Try your best. Be strong and unafraid. Find where you could be. Look towards a better life. Be wise. Listen, learn and use the people in your life to stay stable and grow the healthier person that you should be. John H. is the son of Cathy H.. He is married and lives with his wife in Mamaroneck, NY
When And How To Seek Help For Your ChildBy Joanne Goldman & Rochelle Leiber-MillerIf your child is experiencing trouble in school and or at home, your goal will be to help your child to get back on track. What steps can you, as a parent, take to determine when to help your child, and where to seek the help? Often, a child’s problems are symptomatic of family issues such as parental discord, unemployment, financial and or medical issues. Varieties of programs are available for parents to develop communication, discipline, and coping skills to strengthen family systems and/or improve their children’s academic and personal wellbeing. However, how does a parent recognize when a child’s problem is more serious than just typical childhood/adolescent behavior? What signs should a parent look for that may reveal the need for a professional evaluation or intervention? Often, negative behaviors may indicate a more serious underlying problem. The following behaviors may suggest the need for a parent to seek professional help:
The first step may be to consult with the child’s physician, teachers, or other adults who know the child well. The school social worker or psychologist can be a valuable resource to direct parents to appropriate community agencies that can help families deal with stressful situations. You should call your school and make an immediate appointment to meet with a school-based mental health professional. Taking that first step to help your child achieve and feel successful can be difficult and painful for parents, however be aware that the school professionals will work with you and your child throughout the process. Joanne Goldman and Rochelle Lieber-Miller are Social Workers in the City
Westchester County Children’s System of Care ApproachBy Michael Orth and Neil HawlkAcross NY State and the country, the term “system of care” has been used to describe an array of initiatives that strive to improve the coordination and integration between providers and systems with the intent of improving outcomes. Within child and family serving systems, the term system of care has a more focused definition which has its roots in the 1984 Child and Adolescent Service System Program (CASSP), the first Federal program organized to more holistically address children’s mental health. According to the most recent issue brief prepared by the National Technical Assistance Center for Children’s Mental Health (2010), “A system of care is: A spectrum of effective community-based services and supports for children and youth with or at risk for mental health or other challenges and their families, that is organized into a coordinated network, builds meaningful partnerships with families and youth, and addresses their cultural and linguistic needs, in order to help them to function better at home, in school, in the community and throughout life” (Stroul et al, p. 6). Most recently, the communities funded through the CMHI have worked together in partnership with representatives from NY State to craft a system of care definition that articulates the intent of systems of care for children, youth and their families within NY State: System of care is an approach to collaboration and coordination across systems, communities, agencies, families and youth that promotes the physical, emotional, intellectual and social wellness of children and youth across the lifespan. In partnership with youth and families, a system of care creates a coordinated network of services and supports that is characterized by multi-system sharing of resources and responsibilities. Within systems of care, systems, service providers, and natural supports join with families and youth to develop an integrated and individualized plan to address identified needs, under the concept of “one family, one plan.” A system of care embraces the values of family-driven, youth-guided, community-based, individualized, least restrictive, and is culturally and linguistically competent (NYS System of Care Steering Committee, 2010). Family-driven: “Families have a primary decision making role in the care of their own children as well as the policies and procedures governing care for all children in their community, state, tribe, territory and nation” (Stroul, Blau & Sondheimer, p. 5). Youth-guided: “Young people have the right to be empowered, educated, and given a decision-making role in their own care and in the establishment of policies and procedures governing care for all youth in their community, state, tribe, and nation” (Stroul, Blau & Sondheimer, p. 5). Racially, Culturally and Linguistically competent: The integration and transformation of knowledge, behaviors, attitudes, and policies that enable policy makers, professionals, caregivers, communities, consumers, and families to work effectively in cross-cultural situations (Technical Assistance Partnership, 2010). Community-based: Needed services and informal supports should be available within the community, and be accessible and culturally and linguistically competent (Technical Assistance Partnership, 2010). Individualized & flexible: An approach to care that is developed by an interagency team, with leadership from the child’s parents or legally responsible adult and the child or youth that includes procedures and activities that are appropriately scheduled and used to deliver services, treatments and supports to a child and the child’s family and fits the unique needs of the child and the child’s family and build on child and family strengths (DHHS, 2009). Strength-based: Services and supports that are based upon “qualities that contribute to the family’s life in a functional way and are descriptors that reveal the family’s distinctive attributes” (Rotto, McIntyre & Serkin, p. 404). This concept is also applied to organizations and systems in that systems of care are intended to capitalize on what is working well and build upon those things as their foundation. While systems of care are about ensuring the array of necessary and appropriate services and supports and facilitate the implementation of evidence-based and evidence-informed approaches, ultimately, system of care work is about transformation. It is about collaboration to ensure the change necessary so that all systems, services and people who work on behalf of Westchester County’s children and families are committed to these values and are actively engaged in activities that move their policies, procedures and actions into alignment with them. The responsibility nests with all if us, not with a single system or person. Westchester’s investment in a “system of care” framework began over 20 years ago. In the early 1990’s,Westchester County embarked on a mission to re-engineer its service delivery system for over 3,000 children with diagnoses of serious emotional disturbance. For the Westchester County Department of Community Mental Health this represented a fundamental change from a non-family focused, medical model approach to a family focused, strength based value system. A system of care, we decided, was not a program, but a philosophy and a framework for a changed way of “doing business” for youngsters with high end service needs and their families. Access to Services A component of System of Care is creating access to services for children. The services should be needs driven, not categorically driven. Depending upon the child’s, parent’s or family’s needs, the System of Care structure provides several doors to access mental health and other related services to address those needs. By utilizing a process called Child an Family Team Meeting, needs are assessed and a plan is developed At a Child/Family Team Meeting the facilitator assesses family composition, natural and professional supports, individual and family strengths, family goals and the obstacles to those goals (needs). A plan is developed to overcome those obstacles by mobilizing strengths (and accessing resources to do so) and overcoming obstacles (and accessing services to assist). Neil Hawlk (995-4956), Pat White (995-4666) or any Family Ties communities-based Resource Center (Family Ties administrative office: 995-5238) can help a family access a facilitator to begin the Family Team Meeting process. If a Family Team Meeting or other “strength/needs exploration” process ascertains that a child or adult might benefit from clinical services, psychotherapy and psychiatry, a number of public agencies provide those services around the County for patients with Medicaid. Those with private insurance would need to consult their Insurance Network list of providers for similar services. All of these mental helath resources and services are part of the Children’s “System of Care” along with the services of our system of care partners and services they offer in child welfare, probation and education. If children or adults need additional mental health supports like case management or mental health supported housing, Westchester County has two SPOA (Single Point of Access) processes, one each for children and adults. For each there is a Universal Application Form to fill out and submit with accompanying mental health assessment documentation to request these additional services. These applications are available online at: www.westchestercommunitynetwork.com or www.westchestergov.com under Department of Community Mental Health, adult services. Most clinical practitioners in the County will know about this application process and be able to assist as well as provide the necessary accompanying documentation. Adult SPOA services include case management services, Assertive Community Treatment (in-home clinical and support services for adults unable to utilize on-site clinical services), and housing support programs. These adult and children’s supportive services both require that the applicant have very significant mental health needs and diagnoses. Michael Orth is the Second Deputy Commissioner and Neil Hawlk is the Family Network Coordinator at the Westchester Department of Community Mental Health (DCMH)
Family Ties: A Unique Resource For FamiliesBy Phyllis Elliott & Valerie SenatoFamily Ties is part of a national social justice movement whose goal is to represent the voices of families dealing with significant system issues, in the many venues in which they need to be heard. We also encourage families to voice their opinions at the county, state, and national levels. As an example our families make phone calls and write letters to legislators to influence decisions that affect services for their children. Advocacy efforts emphasize concerns for individuals as well as larger community and state issues. Our work with families empowers them to make choices for their children in regards to school, mental health, and recreational options. As a non-profit agency our services are free to all families who have children with social, emotional, and behavioral challenges. Services are easily accessed because there are no waiting lists. Problems are addressed as they happen. This is so important because many times, a family comes to us in a moment of crisis. While the priority is helping them resolve the immediate crisis, our focus becomes empowering them to construct their own plan to handle future crises with the knowledge that our continuing support is available. We do not impose value judgments; most Family Ties employees are parents of children with challenges who have walked the walk before as these families are now walking. Often we refer families to mental health counseling and help them make the connection to these services. As necessary we may help coordinate a hospital admission. Sometimes this may mean walking a parent through the intake procedure or staying with them as they wait for a room. We are there again at discharge helping with discharge planning. Regarding school issues, Family Ties informs parents about educational rights and special accommodations; we also attend meetings to offer support. As a result of these efforts, parents partner with schools more productively on behalf of their children. We offer parent skills training and provide psycho-educational information to increase their understanding of their children’s symptoms. At our support groups parents exchange practical tips on behavior management using their wisdom and experience to help each other. One of the most significant benefits of being part of Family Ties is the connections families make with each other. We have formed a community where they are accepted and form lasting friendships with their peers increasing their social skills and decreasing their isolation. Families often say that when they come to our resource center, it feels like coming home. Our goal is to continue as a resource for families offering them advocacy, education, and most of all hope. Phyllis Elliott & Valerie Senato are case managers for Family Ties of Westchester
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Hudson Valley Special Education Parent Center at Westchester Institute for Human Development © 2010