Supporting Parents with Serious Mental Illness and Their Families: Family Options Mental Health America, 2007 Annual Me

1. Supporting Parents with Serious Mental Illness and Their Families: Family OptionsMental Health America, 2007 Annual MeetingWashington, D.C., June 6 -9, 2007 Toni Wolf, Executive Director Employment Options, Inc., Marlboro, MA twolf@employmentoptions.org Betsy Hinden, Ph.D. University Massachusetts Medical School, Worcester, MA bhinden@rcn.com I am Betsy Hinden. Kate and I will be talking about the development and implementation of the Family Options Project, a supported parenting intervention for parents with serious mental illness and their families.I am Betsy Hinden. Kate and I will be talking about the development and implementation of the Family Options Project, a supported parenting intervention for parents with serious mental illness and their families.

2. Before we begin: Who�s here today? How many of you are parents? How many of you work with parents & families? What are your thoughts and questions about parents with mental illness and their families?

3. The Need for Supported Parenting Majority of adults with MI & SPMI are parents (Nicholson et al., 2004). Many families in which a parent has a MI are families in which children also have mental health conditions (Hinden et al., 2005). These families are likely to be very vulnerable families with specialized service needs. From just about any vantage point, the need and justification for supported parenting programs is evident. First, the prevalence of adults with MI and SPMI who are parents is high. The NCS, a national study of the prevalence of psychiatric conditions among non-institutionalized adults in the US, indicates that adults with MI are at least as likely to be parents as adults without MI. More than half of the men and women who qualify for psychiatric diagnosis and those with SPMI, are parents. In addition, the National Evaluation of the Federal Child Systems of Care program indicates that the prevalence of families in which both a child and parent have mental health conditions is also high. Fifty-six percent of families receiving services through this program, which focuses on families with children with the most serious mental health issues, report a family history of mental illness, and nearly 40% of those families report at least one psychiatric hospitalization for a parent. So a great many families have overlapping needs and are likely to be recipients of services across systems. The implications for these families, service systems, and our society, are far-reaching. Service needs are likely to be complex, costly, and to require integration both within and between child and adult service systems, something that many service systems are not well-prepared to do. There are many reasons for concern. Stigma is great, child custody loss frighteningly common and devastating, and negative child outcomes more likely. However, there are also reasons for hope. Parents with mental illness want to parent, and want to parent effectively like all other parents. Studies indicate that parenting and parenting support may support better recovery for parents and fewer out-of-home placements. And, finally, data indicate clearly that the effects of parent mental illness on children is mediated by multiple variables which can be influenced by intervention. That is, poor child outcomes is not a necessary outcome. Finally, supported parenting as an intervention is consistent with state of the art and empirically supported existing models such as psycho-social rehab, the strengths model, and family-centered strengths-based models.From just about any vantage point, the need and justification for supported parenting programs is evident. First, the prevalence of adults with MI and SPMI who are parents is high. The NCS, a national study of the prevalence of psychiatric conditions among non-institutionalized adults in the US, indicates that adults with MI are at least as likely to be parents as adults without MI. More than half of the men and women who qualify for psychiatric diagnosis and those with SPMI, are parents. In addition, the National Evaluation of the Federal Child Systems of Care program indicates that the prevalence of families in which both a child and parent have mental health conditions is also high. Fifty-six percent of families receiving services through this program, which focuses on families with children with the most serious mental health issues, report a family history of mental illness, and nearly 40% of those families report at least one psychiatric hospitalization for a parent. So a great many families have overlapping needs and are likely to be recipients of services across systems. The implications for these families, service systems, and our society, are far-reaching. Service needs are likely to be complex, costly, and to require integration both within and between child and adult service systems, something that many service systems are not well-prepared to do. There are many reasons for concern. Stigma is great, child custody loss frighteningly common and devastating, and negative child outcomes more likely. However, there are also reasons for hope. Parents with mental illness want to parent, and want to parent effectively like all other parents. Studies indicate that parenting and parenting support may support better recovery for parents and fewer out-of-home placements. And, finally, data indicate clearly that the effects of parent mental illness on children is mediated by multiple variables which can be influenced by intervention. That is, poor child outcomes is not a necessary outcome. Finally, supported parenting as an intervention is consistent with state of the art and empirically supported existing models such as psycho-social rehab, the strengths model, and family-centered strengths-based models.

4. Service Barriers Parents with MI may enter services through adult or child service systems. Regardless of point of entry, there are significant organizational & practice barriers that make adequate support & effective intervention for families difficult (e.g., categorical services, stigma; Nicholson et al., 2001). These vulnerable families can and do enter services through either the child or adult systems. Regardless of where a family accesses services, they will almost certainly confront significant organizational and practice barriers that make adequate support and effective intervention difficult at best. For example systems are categorical and are set up for either adults or children, providers similarly view themselves categorically, and are often not trained to work effectively across these silos. Stigma is another major obstacle that parents with mental illness face in both child and adult arenas, an obstacle identified by parents with mental illness and uniquely and profoundly debilitating.These vulnerable families can and do enter services through either the child or adult systems. Regardless of where a family accesses services, they will almost certainly confront significant organizational and practice barriers that make adequate support and effective intervention difficult at best. For example systems are categorical and are set up for either adults or children, providers similarly view themselves categorically, and are often not trained to work effectively across these silos. Stigma is another major obstacle that parents with mental illness face in both child and adult arenas, an obstacle identified by parents with mental illness and uniquely and profoundly debilitating.

5. What do parents with mental illness and their families need? Family-centered, strengths-based systems of care: address stigma, i.e., see parenting as an important role for adults with mental illness reflect a much greater degree of integration across child & adult systems So, what do parents with mental illness need? First, they need family-centered, strengths-based SOC�s that address stigma, that view parenting as an important and viable role for adults with MI, and a role which can actually enhance motivation for treatment and adherence to treatment. And SOC�s that reflect a much greater degree of integration and coordination across child and adult systems.So, what do parents with mental illness need? First, they need family-centered, strengths-based SOC�s that address stigma, that view parenting as an important and viable role for adults with MI, and a role which can actually enhance motivation for treatment and adherence to treatment. And SOC�s that reflect a much greater degree of integration and coordination across child and adult systems.

6. What do parents with mental illness and their families need? Family-centered, strengths-based programs that provide family care management: focus on recovery & rehabilitation for parents & resilience for children provide access to & advocacy within both child and adult systems promote self-determination & family driven goal plans or plans of care.

7. The Family Options Project Family-centered, strengths-based supported parenting program for parents with mental illness and their families. A partnership between Employment Options, Inc. (EO) & the University of Massachusetts Medical School (UMMS)

9. UMMS Parenting Projects Team Multidisciplinary group: psychology, occupational therapy, public policy, mental health law, rehabilitation Researchers, clinicians, advocates, family members Parents with mental illness Strategic Planning Group

10. The University of Massachusetts Medical School (UMMS) � Employment Options, Inc. (EO) Partnership 1995 � UMMS focus group 1996 � Family Project 1997 � NIDRR Parenting Options Project 1999 � Family Legal Support Project 2002 � SAMHSA Strengthening Families planning grant 2005 � Family Options Our group from UMASS has had a long and fruitful collaboration with Employment Options, Inc., a clubhouse in Marlborough MA. We have partnered on many projects since 1995 to explore and address the experiences and needs of parents with mental illness. The Family Options Project, a supported parenting program, was the natural and in many ways long-awaited continuation of this collaboration.Our group from UMASS has had a long and fruitful collaboration with Employment Options, Inc., a clubhouse in Marlborough MA. We have partnered on many projects since 1995 to explore and address the experiences and needs of parents with mental illness. The Family Options Project, a supported parenting program, was the natural and in many ways long-awaited continuation of this collaboration.

11. Current programming for parents at Employment Options, Inc. Family Project Clubhouse Family Legal Project Family Options

12. Family OptionsContinuing UMMS � EO Collaboration UMMS & EO develop & pilot intervention � Family Options (FO) EO provides services to 26 to 30 families for 12 months UMMS conducts implementation & intervention outcomes studies Comparison group receiving �services as usual� 26 months of funding This collaboration consisted of the development and piloting of a supported parenting intervention, called Family Options. The intervention would be housed at EO, and EO would provide services for 26 � 30 families; UMMS would conduct studies of the implementation and outcomes of the intervention, using a comparison group receiving services as usual. Funding was available for 26 months, Sept. 05 � December 07. This collaboration consisted of the development and piloting of a supported parenting intervention, called Family Options. The intervention would be housed at EO, and EO would provide services for 26 � 30 families; UMMS would conduct studies of the implementation and outcomes of the intervention, using a comparison group receiving services as usual. Funding was available for 26 months, Sept. 05 � December 07.

13. Family Optionsat Employment Options, Inc. Mission To build resources and relationships to promote recovery and resilience in parents with mental illness and their children.

14. Family OptionsVideo Presentation

15. Family Options Key Concepts & Processes: family-centered, strengths-based, family-driven & self-determined, recovery & resilience, engagement & relationship building, empowerment, availability & access, liaison & advocacy Primary service: family care management family team process The program is built upon eight key concepts and processes which will sound familiar, and which reflect an integration of research on existing programs for parents with mental illness, the values and principles of children�s systems of care, and current the current evidence base on interventions for adults with mental illness. Specifically, the FO Intervention is family-centered, strengths-based, family-driven and self-determined. Intervention focuses on recovery and rehabilitation, engagement and relationship building, family empowerment, availability and access to services and supports, and liaison & advocacy with other providers and community resources. The primary service of FO is family care management � a service that relies on a family team process, much like the child and family team process, to develop and implement family-driven goal plans that build on existing family strengths and resources. The program is built upon eight key concepts and processes which will sound familiar, and which reflect an integration of research on existing programs for parents with mental illness, the values and principles of children�s systems of care, and current the current evidence base on interventions for adults with mental illness. Specifically, the FO Intervention is family-centered, strengths-based, family-driven and self-determined. Intervention focuses on recovery and rehabilitation, engagement and relationship building, family empowerment, availability and access to services and supports, and liaison & advocacy with other providers and community resources. The primary service of FO is family care management � a service that relies on a family team process, much like the child and family team process, to develop and implement family-driven goal plans that build on existing family strengths and resources.

16. Family OptionsIntervention Innovation Involves entire family, including children <18, who may or may not have �problems� Draws from what we know about EBPs for adults with mental illness, parent training, & children�s systems of care Builds on what we have learned works best in a clubhouse setting Requires shifting the agency�s focus FO reflects innovation in that:FO reflects innovation in that:

17. Family Options Team Supervisor & Family Coaches Clinical Consultant Provide family-centered care management a la wraparound: Intensive outreach 24-hour availability Flexible funds for unique needs Family team: liaison & advocacy

18. Family Options Mothers (n = 22) Mean age = 37.4 yrs. Mean # of children in home = 2.6 77% White; 41% Married or with Partner Mean years education = 14 yrs. 23% Employed 46% Affective d/o; 41% PTSD; 9% Anxiety d/o; 4% Psychotic Disorder 76% ever psych. hospitalization 43% DSS referrals; 24% DMH/MH

19. Trauma Experiences reported by FO Mothers (n = 22) 77% ever emotionally abused 77% ever physically abused 64% ever stalked 55% ever witnessed family violence before age 18 45% ever forced to have sex 43% ever touched or made to touch in sexual way 45% ever homeless

20. Children�s Experiences[% of FO Mothers reporting (n = 21) ] 81% ever had an IEP 71% ever had emotional or behavioral problems 48% were taking psych meds in past 3 months 43% ever had psych hospitalization 24% ever involved with police or probation

21. Family Options Outcomes Study Parent & Child Well-being Functioning Supports & Resources Family Empowerment Supports & Resources Program Fidelity/CQI The Family Options project includes an outcomes study which will look at individual parent and child, family, and program level outcomes as shown on the slide. WE are busy collecting and analyzing those data now.The Family Options project includes an outcomes study which will look at individual parent and child, family, and program level outcomes as shown on the slide. WE are busy collecting and analyzing those data now.

22. Family OptionsImplementation Study Focus groups with agency stakeholders 3 groups, 3 stages: program installation, initial implementation, full operation Management team, agency staff & members, Board of Directors Qualitative interviews over time Family Options staff & Clinical Consultant Agency staff, clubhouse members, board of directors The project also includes an examination of the joys and challenges of implementation through focus groups and interviews with key stakeholders. 3 Focus groups with 3 informant groups, at each of the three implementation phases defined by Dean Fixen of the National Implementation Research Network here at USF Program installation phase - 3 months before implementation � process of putting agency and community supports into place Initial implementation phase - 4 months early implementation � requires necessary changes in agency and community Full operation - 1 year after implementation � intervention is up and running, fidelity and sustainability are achieved �Relative advantage� (i.e., perceptions about the advantage of a given event/situation) How might the new program, Family Options, change Options? How might the new program affect members and staff and board? �Innovation-values fit� In what ways does the new program seem to �fit� with how things are done at Options? [culture/philosophy/how things are done around here] �What would be helpful to you and the community in the immediate future regarding having this new program at Options?� Qualitative Interviews (14 participants) 4 Family Options � 2 family coaches, 1 supervisor, 1 clinical consultant (every 6 weeks) 2 Agency administrators � ED and Assistant ED (every 2 weeks) 6 Agency staff and clubhouse members � 2 staff, 4 members (every 6 weeks) 2 Board of Directors � 2 board members (every 3 months) Number of interviews (Dec. 2005-June 2007) 43 completed 106 additional anticipated (if collect data for 18 months � through June 2007) Ethnographic approach �What�s happening with the implementation of Family Options� Pilot study � let participants tell us what�s happening, chart the directionThe project also includes an examination of the joys and challenges of implementation through focus groups and interviews with key stakeholders. 3 Focus groups with 3 informant groups, at each of the three implementation phases defined by Dean Fixen of the National Implementation Research Network here at USF Program installation phase - 3 months before implementation � process of putting agency and community supports into place Initial implementation phase - 4 months early implementation � requires necessary changes in agency and community Full operation - 1 year after implementation � intervention is up and running, fidelity and sustainability are achieved �Relative advantage� (i.e., perceptions about the advantage of a given event/situation) How might the new program, Family Options, change Options? How might the new program affect members and staff and board? �Innovation-values fit� In what ways does the new program seem to �fit� with how things are done at Options? [culture/philosophy/how things are done around here] �What would be helpful to you and the community in the immediate future regarding having this new program at Options?� Qualitative Interviews (14 participants) 4 Family Options � 2 family coaches, 1 supervisor, 1 clinical consultant (every 6 weeks) 2 Agency administrators � ED and Assistant ED (every 2 weeks) 6 Agency staff and clubhouse members � 2 staff, 4 members (every 6 weeks) 2 Board of Directors � 2 board members (every 3 months) Number of interviews (Dec. 2005-June 2007) 43 completed 106 additional anticipated (if collect data for 18 months � through June 2007) Ethnographic approach �What�s happening with the implementation of Family Options� Pilot study � let participants tell us what�s happening, chart the direction

23. What have we learned:Community engagement is important. Build relationships with community organizations & provider agencies Develop mechanisms for communication & collaboration with partner agencies across child & adult sectors at the local, regional & state level Define & develop Respite resources We have learned many things as part of this process thus far, and surely will learn more as we go along. Community engagement is important. You need time before and during toWe have learned many things as part of this process thus far, and surely will learn more as we go along. Community engagement is important. You need time before and during to

24. What have we learned:Workforce issues are important. Program Supervisor is a critical role (challenges in translating model into practice, building interagency relationships, providing staff supervision & training). On-going training and support are necessary to insure delivery of family care management (challenges in navigating paradigm shift, building resources & relationships, creating a family team that supports achievement of family�s goals). We also learned that workforce issues are important. Specifically the Program supervisor�s role is multi-faceted and critical to program success. It includes the challenges of translating a model into practice We also learned that workforce issues are important. Specifically the Program supervisor�s role is multi-faceted and critical to program success. It includes the challenges of translating a model into practice

25. What have we learned:Using a family team (Wraparound) process is important. A collaborative planning process is needed (to achieve goals effectively, avoid staff burnout, & promote systems change) Natural (e.g., family members) and professional (e.g., therapist, state case worker) resources need to be engaged as partners in development and implementation of family-determined, need-driven, strengths-based goal plan

26. Family Options Family Team Establish relationship with parent Identify family strengths & needs Identify family�s natural and professional supports (e.g., extended family, therapist, teacher) Convene family team meeting Develop a collaborative plan of care in the meeting based on family needs and strengths Assign tasks to team members Reconvene periodically to review progress and revise plan

27. Family Options Principles of Care Delivery Need driven plan Planning with family and community. Collaboration between family and community Natural resource = formal resources Planning team composition: natural & formal resources, parents and coach

28. Planning Process:Areas of Family Needs Parents and Children Safety Health Housing Work/School Social/Recreation Mental Health/SA Family Relationship Cultural/Spiritual Legal Operational: transportation, communication,etc

29. Shifting the paradigm in your community: What are the strengths of your community (e.g., existing services, collaborative relationships)? What are the needs of your community with respect to developing policies and programs for parents with mental illness? What partners can you engage in a collaborative process? What are the initial action steps?

30. twolf@employmentoptions.org bhinden@rcn.com www.parentingwell.org And call on usAnd call on us