Nurturing Families When Parents Are Coping With Mental Illness

1. Nurturing Families When Parents Are Coping With Mental Illness Highlighting the Parents with Psychiatric Disabilities Project

2. With the deinstitutionalization movement came assorted new opportunities and challenges for people with mental illness. People gained the freedom to experience parenthood. • Nearly half of the women and men in the United States report a lifetime prevalence of psychiatric disorder.(Data from a National Comorbitity Study (NCS) a survey of over 8000 respondents carried out between 1990 and 1992 by Dr. Ronald Kessler (Kessler,1994). • 30% report the prevalence of at least one disorder in the previous 12 months (Kessler et al., 1997). • Two-thirds of these women , and over half of these men are parents (Nicholson, Larkin, Simon, & Banks, 2001). • The impact of parental mental illness on family life and children’s well being cannot be overstated (Nicholson, Biebel, Hinden, Henry & Stier, 2001).

3. To date, there are few support services to assist parents with their childrearing responsibilities. As a response, the Parents With Psychiatric Disabilities (PWPD) project was founded. Funded through a contract to The Mental Health Association in New York State by the New York State Office of Mental Health, the project has an overall mission to improve services to parents who have been diagnosed with mental illness by: • Raising awareness of parenting issues among providers of mental health services. • Training mental health service providers in treatment issues and support needs of parents with serious mental illness. • Facilitating networking among advocates for parents diagnosed with serious mental illness - both parent/recipients and providers - for the purpose of identifying gaps in service and developing creative strategies to meet parents' needs. • Providing statewide information and referral on issues relating to parents diagnosed with serious mental illness. • Working closely with advocates for parents diagnosed with serious mental illness to identify resources and successful strategies. • Coordinating with and supporting other efforts on behalf of parents diagnosed with a serious mental illness throughout New York State.

4. As an outcome, we established taskforces across the state

5. Find the region that serves your area: North Central Region: Includes Clinton, Franklin, Essex, St. Lawrence, Jefferson, Lewis, Herkimer, and Hamilton counties. South Central Region: Includes Oswego, Onieda, Cayuga, Cortland, Broome, Delaware, Schoharie, Otsego, Chenango, Madison, Onondaga, and Fulton/Montgomery counties. Northern Hudson Region: Includes Warren, Washington, Saratoga, Schenectady, Rensselaer, Albany, Greene, and Columbia counties Southern Hudson Region: Includes Ulster, Dutchess, Sullivan, Orange, Putnam, Rockland, Westchester, New York City, Nassau, and Suffolk Counties. North Western Region: IncludesWayne, Ontario, Livingston, Monroe, Orleans, Genesee, Seneca and Niagara counties. South Western Region: IncludesErie, Wyoming, Chautauqua, Cattaraugus, Allegany, Steuben, Schuyler, Tompkins, Yates, Chemung, and Tioga counties.

6. What are the teams addressing? • Each team is working in its own way. • Some regions are working on a collaborative effort to create educational tools. • Some are encouraging each county to work on its own needs and sharing its efforts at the regional meetings. • All teams presented at the fall 2002 statewide meeting.

7. Areas of need • Educating Family Courts • Educating Care Providers • Reducing Stigma • Increasing Services

8. Why Family Courts ? • Custody loss rates for parents with mental illness range as high as 70% to 80%; (Burton, 1990). • The costs of family disruptions to society and the emotional burden to children and adults are incalculable. • Parent’s express that their efforts are sometimes overlooked or undermined. Families are disrupted, and systems are strained providing alternative placements like foster care for children that could have stayed at home if support services were available.

9. Educating Care Providers • Often times, providers focus on individual patients or clients, rather than on adults with mental illness living in the context of communities and families, and even neglect to ask about family roles and responsibilities (Nicholson, Geller & Fisher, 1996; Nicholson, Geller, Fisher & Dion, 1993). • One way change could begin is by discussing what it would take to require providers to ask these simple questions during initial meetings or intakes, or by starting to provide trainings on family focused care to the adult care providers.

10. Reducing Stigma • The impact of parenting experiences on the well being of adults with mental illness is largely unexplored. Stigma distinguishes mental illness from other serious or chronic conditions like heart disease. Being labeled with a psychiatric diagnosis profoundly negatively affects the experiences of parents and their family members, adults and children alike. However, undiagnosed, untreated mental illness takes its toll on families as well (U.S. Department of Health and Human Services, 1999).

11. Impact of Stigma • Prevents people from getting treatment. • Sustains myths that people with mental illness do not have children . • Generates erroneous beliefs that Parents with psychiatric disabilities are unable to parent successfully. • Removes the potential for program development.

12. Improving & Increasing Services • Currently, in New York State, services are not integrated or coordinated across or within systems. • Funding streams often create barriers to accessing services for parents or for children. • Services tend to be deficit focused and failure based.

13. Improving & Increasing Services • MHANYS has been working for several years to improve and increase services. • Task Force Groups are evaluating their regions to identify service gaps and how to address them. • Only a few programs exist that have been recognized specifically for parents with mental health needs. A complete listing of New York programs is on the www.MHANYS.org website.

14. Steps for Stakeholders: A Consumer-Researcher’s Perspective(Stier, 2001) http://www.mentalhealth.org/publications/allpubs/ken-01-0109/ch8.asp • Identify Adults with Mental Illness who are Parents - Currently there is no standardized data collection on the status of parenting by adult clients. Yet, the parent roleis integral to recovery. • Recognize the Strengths of Parents - All parents struggle with issues relating to raising children. Emphasizing strengths in parenting skills and acknowledging successes gives parents a feeling of pride in their accomplishments. • Attend to Custody and Visitation Issues - Parents who will be appearing in court should be supported in preparation, and should be encouraged to have a wellness plan in place. - If parents temporarily lose custody, they should request a time line for regularly scheduled evaluation or progress reports.

15. Steps for Stakeholders: A Consumer-Researcher’s Perspective (Stier, 2001) http://www.mentalhealth.org/publications/allpubs/ken-01-0109/ch8.asp • Attend to Termination of Parental Rights Issues - Termination can result in parents feeling inadequate, and that they have lost contact with their children forever. - Careful consideration needs to be given to whether the termination of parental rights is really best for the child. - A peer support group, possibly organized by service providers, could provide a low cost forum for parents to talk about their experiences to cope with the feelings surrounding termination.. • Attend to the Legal Issues of Parents - Parents need help with legal representation, which should be available on a low- or no-cost basis, if necessary. - Emphasis should be placed on keeping the family together, and reunification of divided families.

16. Steps for Stakeholders: A Consumer-Researcher’s Perspective (Stier, 2001) http://www.mentalhealth.org/publications/allpubs/ken-01-0109/ch8.asp • Provide Supports for Children of Parents With Mental Illness - Children of parents with mental illness experience a variety of emotions and experiences, and may encounter barriers to “normal” living. Much like adults, they may feel guilt, blame, and shame. - A support group designed for youth could help children address these issues. • Educate Professionals to the Needs of Parents - This includes, Judges, Lawyers, Teachers, Childcare providers, and anyone that works with parents. • Peer Supports for Parents - Difficulties in parenting can be aided by providing support groups and parenting training. These services may be provided at a minimal cost.

17. Steps for Stakeholders: A Consumer-Researcher’s Perspective(Stier, 2001) http://www.mentalhealth.org/publications/allpubs/ken-01-0109/ch8.asp • Parenting as a Policy Priority - Currently, several states have policies whereby parental rights termination proceedings can be initiated based simply on a parent’s psychiatric diagnosis. - Educate and advocate: Policy makers need to realize that having a mental illness does not mean a person is incapable of being a good parent or of having a fulfilling family life. • Coordinate Services With Parents - Agencies and service providers need to communicate with each other to ensure a comprehensive system of care. Permission should be secured from the parents they are working with before confidential materials are shared. - Coordination across agency boundaries should facilitate the provision of appropriate services in a more cost-effective fashion. • Battle the Stigma of Mental Illness - Educate the community that except in cases where a child’s safety or welfare may be jeopardized, a person with mental illness should be allowed the opportunity to parent his or her children and raise a family.

18. MHANYS 2001 statewide meeting • Five programs were highlighted at this meeting to show the diversity and creativity that can be used to generate various models meeting different needs in each county. The five programs included: MHA in Franklin County - "Caring Helping Independent Parents" MHA in Rochester County - "Better Days Ahead" MHA of Orange County - "Invisible Children's Project" MHA of Westchester County - "Partners in Parenting" MHA in Dutchess County - "Emerge" See links to information on these on the link below: http://www.mhanys.org/pwpd/pwpd_2001swm.htm

19. A complete report of the meeting will be posted on the http://www.mhanys.org/pwpd/index.htm website. The report includes information and presentations provided by researchers and parents. Findings gleaned from discussions held with task forces addressing county and government policies and procedures impacting families Recommendations for counties’ policies and procedures, to improve access and appropriate services or linkages. 1 year later, 2002 statewide meeting

20. The Future The PWPD project encourages a county wide approach that includes a comprehensive continuum of services that are family focused with a mix of treatment, rehabilitation and support services sensitive to the stigma faced by parents with psychiatric disabilities and acknowledges custody concerns. This approach includes parents, is strength based and honors parenting as part of the foundation for a parent’s recovery. For more information call the Mental Health Association in New York State, Inc. at (518) 434-0439 ext. 14

21. Additional Resources • Additional resources will continue to be updated regularly on the MHANYS website. The statistics and findings in this presentation are based on the Center for Mental Health Services Research Grant to the Department of Psychiatry at the University of Massachusetts Medical School. The full report can be found at http://www.mentalhealth.org/publications/allpubs/ken-01-0109/default.asp • The title of the report is “Critical Issues for Parents with Mental Illness and their Families” The lead researcher was Joanne Nicholson, Ph.D.