Lisa Schmidt a & James Monaghan b a College of Nursing and Health Professions, Drexel

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1 This article was downloaded by: [University of Medicine & Dentistry of NJ] On: 20 May 2012, At: 18:29 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: Registered office: Mortimer House, Mortimer Street, London W1T 3JH, UK American Journal of Psychiatric Rehabilitation Publication details, including instructions for authors and subscription information: Intensive Family Support Services: A Consultative Model of Education and Support Lisa Schmidt a & James Monaghan b a College of Nursing and Health Professions, Drexel University, Philadelphia, PA, USA b Twin Oaks Community Services (formerly Steininger Behavioral Care Services), Cherry Hill, New Jersey, USA Available online: 09 Mar 2012 To cite this article: Lisa Schmidt & James Monaghan (2012): Intensive Family Support Services: A Consultative Model of Education and Support, American Journal of Psychiatric Rehabilitation, 15:1, To link to this article: PLEASE SCROLL DOWN FOR ARTICLE Full terms and conditions of use: This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. The publisher does not give any warranty express or implied or make any representation that the contents will be complete or accurate or up to date. The accuracy of any instructions, formulae, and drug doses should be

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3 American Journal of Psychiatric Rehabilitation, 15: 26 43, 2012 Copyright # Taylor & Francis Group, LLC ISSN: print= online DOI: / Intensive Family Support Services: A Consultative Model of Education and Support Lisa Schmidt College of Nursing and Health Professions, Drexel University, Philadelphia, PA, USA James Monaghan Twin Oaks Community Services (formerly Steininger Behavioral Care Services), Cherry Hill, New Jersey, USA Administrators of publicly funded mental health services are increasingly interested in evidence-based practices that can be reasonably implemented to help people in recovery. This article offers an example of a service that meets these requirements. It describes the successful development and implementation of Intensive Family Support Services, a New Jersey based program available to families caring for a loved one with a mental illness. Contributors to the article share their direct experiences over the past 25 years, which have led to the program s current operation. These experiences include the essential steps taken to develop policy, implement standards, and provide ongoing funding for an emerging best-practice model in family support. Also detailed are the many ways New Jersey has embraced a family-driven approach to develop and deliver support services. The behavior of a family member with a serious mental illness presents challenges to even the most loving of families. A variety of family-based, psychosocial interventions have been developed that Special thanks are extended to Bonnie Schorske for providing primary source documents from DMHS, reviewing this manuscript, and offering feedback. Address correspondence to Lisa Schmidt, PhD, CPRP, College of Nursing and Health Professions, Behavioral Health Counseling, Mail Stop 507, Drexel University, Philadelphia, PA , USA. LTS33@drexel.edu 26

4 Intensive Family Support Services 27 offer information, skills training, crisis intervention, and emotional support to help family members cope with the stresses of caregiving (Corrigan, Mueser, Bond, Drake, & Solomon, 2008; Lehman et al., 2004). In this article, we trace New Jersey s pioneering efforts to establish the Intensive Family Support Services (IFSS) program as an integrated element of a publicly funded, mental health service system. We also describe the services in some detail and offer a sampling of program evaluation results. New Jersey s IFSS is unique in many ways. It is a community based service available to all residents. It focuses primarily on the outcomes of family members, not just the loved one with mental illness. It offers an array of educational, consultative and support services located in one easily identifiable program (Schorske, 2000, p. 1). The structure of services is driven by individual family choice rather than by a single model approach. The New Jersey experience deserves recognition too because it offers an early and successful example for other states to follow. BACKGROUND The two most common models of family support are family psychoeducation (e.g., Anderson, Hogarty, & Reiss, 1980; McFarlane & Dunne, 1991) and family education (e.g., National Alliance on Mental Illness, Family-to-Family Education). Family psychoeducation programs are offered by trained professionals in individual or multifamily formats and may include the person with mental illness in the intervention activities. These programs involve the whole family in helping the person with a mental illness and are associated with positive outcomes for the ill family member such as a reduced risk of relapse and improved medication adherence (Pharoah, Mari, Rathbone, & Wong, 2010). The Substance Abuse and Mental Health Services Administration s Family Psychoeducation toolkit represents the evidence-based best practices associated with this type of intervention (SAMHSA, 2009). The family education model primarily addresses issues associated with caregiving. It is a self-help approach, with families providing information and support to one another. Family education improves knowledge about mental illness and evidence-based treatments, and helps family members develop coping skills to manage the stresses of caregiving. Dixon et al. (2004) evaluated the National Alliance on

5 28 L. Schmidt and J. Monaghan Mental Illness s (NAMI s) Family-to-Family and found that program participants reported significant reductions in their sense of subjective burden while gaining knowledge about the illness, the mental health treatment system, and how to take better care of their own needs. A third model, family consultation, offers elements of both approaches described above and more accurately reflects the IFSS model. As described by Marsh (1998), consultation is a collaborative process whereby the focus of the intervention is set by the family s expressed concerns. Professionals specializing in family-focused practice acknowledge the competence of the family and offer consultation and support designed to enhance their ability to cope with care giving pressures. New Jersey is the first state in the U.S. to implement family consultation within its core mental health system. IMPETUS AND RATIONALE FOR IMPLEMENTING A STATEWIDE PROGRAM Throughout the 1980s, the New Jersey Division of Mental Health and Hospitals (DMH&H) explored ways to help people with mental illnesses live in the community. As in other areas of the country, the impetus for this exploration came in part with the recognition that a large percentage of the annual budget for public mental health services was tied up supporting state hospitals. Fewer and fewer patients were being treated at this level of care, yet the cost of supporting these institutions continued to rise. A desire to reallocate the budget to serve more people in the community, including a growing population of young adults actively using crisis and local inpatient services, were driving forces for change. To address these issues, an eclectic mix of people participated in a series of task forces and planning conferences sponsored by the New Jersey Department of Human Services (NJDHS). These groups included state employees, local providers, consumers of mental health services, and family members caring for an adult with mental illness. They discussed options for strengthening community services with the aim of reducing the number of state hospital beds. They analyzed the feasibility of introducing evidence-based practices such as assertive community treatment as well as emerging practices in housing, employment services, and psychoeducation.

6 Intensive Family Support Services 29 Task force members reviewed data showing that families were actively involved in the lives of people served by the public mental health system. Service system utilization reports revealed that 32% of people admitted to the state hospitals lived with family prior to hospitalization, 60% of patients leaving a state or county hospital went to live with a family member, and 54% of people enrolled in community mental health programs lived with family or a spouse (NJDHS, 1988; Schorske, 2000). Family members expressed consternation that while they were actively involved in supporting their loved ones, they often felt neglected and even blamed for their loved one s illness (Gubman-Riesser & Schorske, 1994). This reality motivated task force members to push for the inclusion of family support services in the plan to reorient public mental health care. At the conclusion of the fact-finding phase, task force recommendations were incorporated into several phased, statewide implementation plans (The 450 Plan, The Redirection Plan, The Redirection Plan II). The state legislature authorized a 3-year Bridge Fund for new service development in preparation for closing one of the state psychiatric hospitals. Once the hospital closed, the Bridge Fund money was replaced annually by the $60-million operating budget of the closed institution. This redirection of funds was protected in perpetuity by state law. Thus, throughout the 1990s, the state established new community services addressing the needs of people in the hospital who could be discharged and people in the community who were at risk of hospitalization. These efforts resulted in a statewide expansion of case management services, assertive community treatment, supervised community residential programs, and Intensive Family Support Services (NJDHS, 1995). STEPS IN THE DEVELOPMENT OF THE IFSS MODEL The history of the development of the IFSS model begins well before New Jersey s plans to reduce state hospital census. In the mid 1980s, small independent programs of psychoeducation existed around the state. These programs had developed through local collaboration between providers such as the Mental Health Association, family caregivers, and local NAMI leaders. The programs of this era offered self-help resources and coping tools for caregiving and support. Some also employed mental health professionals who offered consultation and guidance. In 1988, innovators

7 30 L. Schmidt and J. Monaghan involved with these initiatives helped DMH&H staff develop a policy paper for family psychoeducation (NJDHS, 1988). The paper did not prescribe a specific model of family intervention but rather gave guidelines for offering a menu of comprehensive, flexible supports in response to local needs. Recommended supports included (a) helping family members understand the etiology, symptoms, and treatment methods associated with mental illness; and (b) offering formal instruction on the use of coping skills, problem solving, stress management, communication, and limit setting, similar to behavioral family therapy (Mueser & Glynn, 1999). Additionally, the paper recommended that families have opportunities for exploring their experiences with a professional or with other family caregivers. Useful activities of this type include talking about attitudes and feelings regarding mental illness and the impact of caregiving on family members. Services should focus, too, on increasing the family s social supports including referral to local chapters of NAMI. Finally, policy recommended that skilled staff, including at least one master s-level supervisor, should deliver these family support services. Shortly after the paper was distributed statewide to stakeholders, New Jersey funded several IFSS demonstration projects incorporating the policy guidelines. The services of these pilot programs were offered free of charge to families of 8 of the 21 counties. Families were eligible regardless of whether their ill member was enrolled in treatment. Riesser, Minsky, and Schorske (1991) evaluated the pilot projects by examining the activity and outcomes of approximately 50% of all those who were served in a 16-month period (N ¼ 191). Overall caregiver burden was reduced by 23% at 6 months. It also appeared that more support services (duration and multiple types of support) led to improved outcomes. Family member satisfaction with mental health services for their ill relative increased 20%. Benefits were realized by the ill family member, too, showing a 75% reduction in hospitalizations and a 90% reduction in crisis service use. These data established a connection between family supports and reduced acute care use, thus uniting the interests of those trying to reduce the state hospital population with those wishing to support family caregivers. Findings of this study were used to advocate for the expansion of IFSS to all counties. Another significant factor supporting statewide expansion of the program was the passage of the Family Support for Persons with a Serious Mental Illness Act, P.L This act explicitly acknowledged

8 Intensive Family Support Services 31 the impact of caregiving on the family and outlined the support principles first iterated in the 1988 policy paper. The act appropriated $90,000 to establish structures ensuring that family support programs play a vital role in the core public mental health system. These structures included three ongoing regional IFSS family work-groups and one statewide family group. These groups develop, monitor, and periodically evaluate whether the goals of the act and later, the regulations governing Intensive Family Support Services, are being accomplished. NAMI NJ oversees the activity of these groups and publishes findings of their activities every few years. The two most recent plans are available at the NAMI NJ Web site (e.g., NAMI, 2006). Regulations delineating the purpose and elements of IFSS were first published in A statewide contract monitoring system was established to ensure program fidelity and outcome evaluation using standardized quality assurance measures. These measures include a family burden questionnaire (later renamed the family concerns questionnaire) and a satisfaction survey. These developments preceded the expansion of IFSS to all counties of the state. New Jersey offers community-based public mental health services through competitively awarded contracts with independent providers. One of the first tasks of the newly formed family work-groups was helping to develop the 1996 request for proposals for IFSS expansion. Additionally, work-group members reviewed proposal submissions and made award recommendations. The resulting IFSS contracts in 1997 dollars included an average of $31,690 in start-up costs for each program and an average annual budget of $104,000. Contracted providers receive periodic site reviews and work-group members actively participate in these monitoring activities (Schorske, 2000). A large outcome evaluation study covering all 21 counties was performed in 1999 (N ¼ 1,250). It examined satisfaction with IFSS as well as family concerns. Satisfied participants ranged from 87% to 98%. The only low rating was for ease of finding the program, with 34% not satisfied. Level of family concerns decreased significantly from baseline rates (Schorske & Riesser, 2003). SERVICE ELEMENTS OF THE NEW JERSEY MODEL The New Jersey model offers a menu of support options from which families can pick and choose. Any New Jersey resident

9 32 L. Schmidt and J. Monaghan caring for an adult (18 years or older) with a serious mental illness is eligible. All services offer avenues for improving the knowledge, skill, and overall quality of life of the family. Support specialists offer information, education, and support related to (a) common symptoms of mental illness and evidence-based treatment options; (b) crisis prevention and intervention strategies, such as advocating for needed services, monitoring for early warning signs of illness, and effective communication skills; (c) how the local community mental health system operates; and (d) using positive coping strategies to promote wellness, recovery, and ongoing support for the whole family. Schorske and Riesser (2003) reported that statewide, 90% of IFSS-registered participants choose individual family consultation, 19% choose family support groups, 15% choose psychoeducation groups, and 9% choose respite. It should be noted, however, that many uncounted individuals attend the family psychoeducation workshops without ever registering as an IFSS participant. Nonetheless, this service-use pattern demonstrates that families value the opportunity to privately discuss issues one-on-one with an expert. Few opportunities like this exist outside of IFSS. Individualized, Single-Family Consultation Experienced family support specialists provide hope and support to caregivers. They help them identify their strengths and resources and address immediate needs for information and emotional support. The relationship between specialist and caregiver is not therapist-client but rather a collaborative partnership driven by the family s expressed desires. A family concerns survey (described in more detail later in this article) is completed by the primary caregiver and the survey results are reviewed for ideas on what should be prioritized. The family collaborates with the specialist to define goals for the consultation. These goals may include learning about evidence-based treatment resources, developing effective communication skills, setting limits with the relative who has a mental illness, or just finding ways to relax. Caregivers receive highly individualized education about the signs and symptoms related to the diagnosis of their loved one, their medications, and treatment options. They discover who the providers are in the local community mental health system and how to effectively negotiate

10 Intensive Family Support Services 33 service delivery. The consultation aims to empower caregivers with knowledge and skills that promote wellness and recovery for all family members. The duration of family consultation is quite variable, lasting for as little as one session, but on average includes multiple meetings over 12 months. Consultations can stop and even restart again at any time the family chooses. Psychoeducation Groups Knowledgeable trainers and educators are recruited to facilitate educational workshops, which are open to the public. On average, six training sessions are conducted annually by each provider organization. Each workshop may engage 60 people at a time and run as single or multiple sessions, depending on the topic. The IFSS regulations include a long list of psychoeducational topics based on those described in the original 1988 policy paper. New topics are also developed in collaboration with NAMI and the expressed needs of the local IFSS families. Family members, consumers of mental health services, and sometimes even local mental health providers may attend these free educational sessions. Although primarily didactic in format, there is often a dynamic exchange of information as workshop presenters interact with class members representing different stakeholder groups. New insights about problems and solutions are acquired through this process. Local IFSS providers coordinate their training schedule and agenda with the applicable local chapter of NAMI. This ensures that training is available to families throughout the year, either through NAMI s family-to-family program or through IFSS. Family Support Groups IFSS-sponsored, multifamily support groups take many forms. Some are professionally facilitated self-help groups, in which participants discuss their mutual experiences with caregiving and receive emotional and instrumental support. Other groups exist to offer social and recreational activities that help family members build a social network of new friends. Some support group activities include the ill family member while others are exclusively for the caregivers. All these groups offer opportunities for building hope and engaging in positive interactions that enhance the bonds

11 34 L. Schmidt and J. Monaghan among and between families. These activities also ease the isolation and stigma that many caregivers experience. Respite Care Caregiving can involve long, stressful hours of selfless commitment to the wellbeing of another person. Respite care is a time limited, nonemergency service designed to allow a caregiver planned time away from the person being cared for. A respite provider can come to the family home to check in with the person with a mental illness while the family is away on a planned vacation. Alternatively, the respite provider may take the ill relative on an outing for the day while the caregiver spends time at home. Respite allows caregivers time to focus on themselves, refresh their energy, and spend time engaged in more ordinary social activity. This promotes personal wellness. Systems Advocacy/Self-Advocacy Family support specialists help caregivers become more effective advocates for themselves, as well as the person they are caring for. Specialists may initially advocate directly with mental health providers on behalf of the family, or they may accompany the family to meetings with providers, especially treatment planning meetings. Advocacy may also involve helping families understand their rights as to information sharing. IFSS programs may offer assertiveness training that teaches family members how to effectively interact with mental health providers. If there is an interest, systems advocacy can also include helping caregivers become more involved in service system planning and evaluation. This may include such diverse activities as providing public testimony, participating on committees and task forces, or helping raise funds for clinical research. Information and Referral/Service Linkage Family support specialists provide individualized guidance to families that need additional services and supports. The primary focus is on services for the family. These may include an introduction to the local chapter of NAMI, assistance with applications for

12 Intensive Family Support Services 35 entitlement benefits for themselves or the person they are caring for, or referral to family therapy. Information about treatment and resources for the person with a mental illness may also be provided. Future Planning Many caregiving relationships involve aging parents caring for adult sons and daughters. NAMI NJ reports that the average age of caregiving parents is 65 years. Thus, a significant worry for these caregivers is concern over what will happen to their loved one after they pass away. Who will provide assistance with treatment monitoring, financial obligations, housing maintenance, or any of the other supportive obligations shouldered by these parents? Some IFSS programs offer caregivers opportunities to have frank discussions with experts regarding the legal and financial resources and pitfalls associated with estate planning, guardianship, and trusts. Planned Lifetime Assistance Network of New Jersey works with many IFSS participants to develop care plans that address financial, legal, and social service needs. This eases the worry of aging caregivers. Medication Education Because medication plays a significant role in the treatment of serious mental illness, knowledge about the purpose, effects, and risks of taking medication are important to the recovery process for most people. Informed families are better equipped to help their loved one adhere to a medication regimen. They may also communicate more effectively with consumers and prescribers when problems occur. This is not a separate element of service, but rather, medication information is offered as appropriate, throughout the various interactions IFSS staff have with families. STAFF TRAINING The many services and supports required of the family support specialist demand a broad knowledge base and effective interpersonal skills. In addition, the specialist must stay current with emerging and evidence-based practice developments, as well as local trends in the needs of the families they serve. In-service training

13 36 L. Schmidt and J. Monaghan for IFSS staff is conducted in collaboration with NAMI NJ and the statewide family work-group. The statewide body polls IFSS providers on their training interests. Survey results inform the development of an annual staff training agenda, which includes provider workshops and an annual conference for IFSS staff. MEASURING OUTCOMES As we have seen, from the earliest stages of IFSS program development, planners carefully measured the effects of the service on key outcomes. At present, each contracted provider tracks data related to two outcomes: family satisfaction with services and the impact of caregiving. IFSS participants complete an annual satisfaction survey based on the Client Satisfaction Questionnaire (Attkisson, 1987), which has a reported Cronbach s alpha of.86 (Riesser et al., 1991). By regulation, programs are expected to have at least a 40% participation rate in the survey, and at least 80% of respondents must agree or strongly agree that their provider exhibits the qualities described in the survey. Table 1 shows the survey items as well Items TABLE 1. Satisfaction survey items and results for Steininger IFSS (N ¼ 43) Satisfaction Rate, % 1. It was easy to find out about this program IFSS staff were sensitive to the problems of having a mentally ill 98 relative. 3. IFSS staff were competent and knowledgeable IFSS staff were available when I needed them IFSS staff helped with mental health providers and the mental 93 health system. 6. I was told about other family support services available in my 100 county. 7. I learned new techniques that helped me with my ill relative Information and services were relevant to my situation Overall, I benefited from the services I received I would recommend this program to others. 100 Overall total 95% Note: Family members report the extent to which they experience each item by marking: 1 (strongly disagree); 2 (disagree); 3 (no opinion); 4 (agree); 5 (strongly agree). A participant is considered to be satisfied if he or she rates an item 4 or 5.

14 Intensive Family Support Services 37 as an example of typical results as reported in 2009 by Steininger Behavioral Care Services, an IFSS provider located in Camden County. Steininger also polls IFSS families on their interest in a variety of family education topics in advance of their annual planning process. Table 2 shows the preferred topics listed by participants of the 2009 annual satisfaction survey. Providers also measure any changes that IFSS participants experience related to objective and subjective burden (Hoenig and Hamilton, 1966). In New Jersey, the term family burden was replaced with family concerns because many families, especially Hispanic families, reported that burden was judgmental and did not characterize their overall feeling about caregiving. Nonetheless, because IFSS is aimed at helping caregivers cope more effectively with their situation, it is expected that the number and intensity of family concerns will decrease with support. A family member completes a survey at the start of individualized consultation, and then again at 6 months, annually, and at service termination. This Family Concerns Questionnaire is based on the Burden TABLE 2. Satisfaction survey results for preferred psychoeducation topics Steininger IFSS % of respondents Communicating with someone who has active symptoms 70 Housing resources and options 65 Legal issues; Benefits such as SSI=SSDI 60 Methods for effective problem solving 51 Coping strategies (e.g., limit setting, respite, illness management) 49 Stress management=relaxation 49 Siblings dealing with mental illness in the family 44 Crisis prevention and intervention 40 Humor 40 Parents dealing with mental illness in the family 40 Spouses dealing with mental illness in the family 28 Offspring dealing with mental illness in the family 23 Post traumatic stress disorder 19 Substance abuse - signs of abuse, best treatment, stages 19 of recovery Physical or sexual abuse 14 Note: IFSS participant responses to the 2009 Steininger Satisfaction Survey regarding interest in future training topics. Respondents could choose more than one topic.

15 38 L. Schmidt and J. Monaghan Assessment Scale (Reinhard, Gubman, Horwitz, & Minsky, 1994), and has an internal reliability measured by Cronbach s alpha ranging from.89 to.91 (Riesser, Minsky, & Schorske, 1991). Table 3 lists the scale items representing the families experience of both objective impact (e.g., had financial problems; cut down on leisure time) and subjective impact (e.g., became embarrassed because of your ill relative s behavior; were upset about how much your ill relative had changed from his or her former self). Some programs ask each family member to complete a survey, while others ask just the primary care provider (as designated by family members) to respond. Of interest here is that the majority of IFSS participants, and thus survey completers, are mothers who have sons with a mental illness (Schorske & Riesser, 2003). To give the reader a sense of typical responses to the survey at baseline and after at least 6 months of IFSS participation, Table 3 includes data from Steininger s internal quality assurance report. It shows the mean scores for baseline and follow-up for each survey item as well as the reduction of those concerns over time. KEYS TO NEW JERSEY S SUCCESS There are several critical success factors that New Jersey providers and families have come to appreciate in the years since IFSS was first conceived. The prime factor involves a family-driven approach to planning, provision, and evaluation of the program. The New Jersey experience is a case study in the operationalization of this principle, evidenced at all levels of service planning and operation. In addition to the statewide involvement already discussed, family members participate on county advisory boards. These boards work with IFSS supervisors, assisting in staff selection, program development, and program evaluation. Family-driven service is also fundamental at the direct service level. Individual families choose from a menu of services based on their perceived needs and goals. The service is flexible to family preferences for when, where, how, and how much support is provided. The most effective family-driven support quickly establishes value to the family by addressing immediate needs and conveying a belief in the family s capacity for recovery. The qualities of the family support specialist are also important to the success of the program. The specialist works diligently,

16 Intensive Family Support Services 39 TABLE 3. Family concerns survey results Steininger IFSS outcome evaluation (N ¼ 215) Survey item First Last Change, % 1. Had financial problems Found your financial security at risk Had to miss regularly scheduled activities (work, school, volunteer, etc.) 4. Found it difficult to concentrate on your own activities 5. Had to change personal plans i.e., taking a new job or going on vacation 6. Cut down on leisure time Found the household routine was upset Had less time to spend with friends Neglected other family members needs Experienced family frictions and arguments Experienced friction with neighbors, friends or extended relatives 12. Became embarrassed because of your ill relative s behavior 13. Felt guilty because you were not doing enough to help 14. Felt guilty because you felt resp. for causing your ill relative s problems 15. Resented your relative because she=he made too many demands on you 16. Felt trapped by your care giving role Were upset about how much your ill relative had changed from former self 18. Worried about how your behavior with your relative might make illness worse 19. Worried about what the future holds for your relative 20. Found the stigma of the illness upsetting Experienced physical strain, fatigue or other physical problems 22. Felt alone Felt mental health professionals were not willing to talk with you 24. Felt ill relative was not getting the MH services you felt needed Average % Note: Family members report the extent to which they experience each item by marking: 4 (a lot), 3 (some), 2 (a little) or 1 (not at all). All changed scores represent decreases in family concern.

17 40 L. Schmidt and J. Monaghan establishing and facilitating a relationship built on caring and trust. Interestingly, early in the planning of IFSS, task force family members expressed a preference for older, more mature support specialists people with life experience, and specifically experience in establishing and heading a family of their own. Families also expressed preference for support specialists holding advanced degrees and several years of experience working in the behavioral health care system. These qualities are perceived as more trustworthy and may offer advantages when building initial rapport. Keeping the focus on the family s overall functioning and quality of life is essential. The support specialist needs to facilitate the family s accurate assessment of their strengths and needs and help them identify strategies that address their goals. This process considers cultural preferences, quantity and intensity of concerns, motivation for change, and perceived barriers to recovery. Family plans should include attainable and measurable goals. Collaboration thus drives the development of appropriate supports that align with the family s perceived needs. Another important success factor has been the measurement of outcomes and methods for continuous quality improvement to help ensure a vital and relevant program. The collaboration of constituent group leaders has produced clear and measurable expectations for family support. Providers are held accountable for tracking and reporting various metrics focused on productivity, quality, and outcomes. Qualitative program evaluations are conducted with the participation of family members, and outcomes are monitored with validated measures. CURRENT CHALLENGES New Jersey has offered IFSS for over two decades. In that time it has consistently proven its value as measured by high rates of participant satisfaction and significant reductions in family concerns about caregiving. Despite these positive outcomes, challenges that mirror those faced by the larger mental health system have stymied access for some who could benefit from the service. Disparities in IFSS use among cultural and ethnic minorities remain problematic despite the development of various support and education pilot programs for minority groups. Providers have incorporated cultural competence best practices and have used state funded training

18 Intensive Family Support Services 41 and resources. Many providers have coordinated and collaborated with NAMI NJ s multicultural outreach program that provides specific support and education (in native languages when applicable) to minority groups including African Americans, Latinos, Chinese, and South Asians. Funding, although protected from significant cuts by state law, has remained flat. This has effectually frozen the capacity of IFSS programs to year-1 levels. The initial goal for statewide implementation was to establish a presence in each county regardless of the size of the pool of eligible families. Thus, each county-based program employs about two full-time equivalent positions responsible for administering and providing support to anyone who requests it. To illustrate the problem, consider Steininger Behavioral Care Services situation. The organization treats over 10,000 consumers annually in a county with an estimated population of 517,879. The capacity to adequately meet the full need of families in the county simply does not exist. Perhaps this explains why programs are not well advertised by the state. Occasionally, small grants have funded additional specialized education groups for specific family roles (sibling or spouse caregiver) and acute support services for families waiting in a psychiatric crisis screening center. However, the near future looks dim for funding expansion given New Jersey s state budget deficits. Flat funding also contributes to another challenge, pervasive in the not-for-profit public sector: relatively high staff turnover. This creates support discontinuity and reduces service capacity as new employees need time to perform effectively. Family preference for experienced support providers requires attracting talented and dedicated professionals. Low salaries for experienced master s level staff make this a difficult proposition. CONCLUSION In New Jersey, family caregivers and members of NAMI NJ have worked together with providers and policy makers for many years to develop a mutual understanding of the devastating impact of mental illness on the family and what needs to be done to effectively support caregivers. The impact of mental illness is often compounded by a mental health system that has neglected family needs and often blames, isolates, and stigmatizes the family. Given appropriate knowledge, skill, and supports, we now recognize that

19 42 L. Schmidt and J. Monaghan families can have enormous positive effect on the process of recovery of their loved one with a mental illness. With proactive planning, family support services can be integrated into the core mental health system and offered affordably. REFERENCES Anderson, C. M., Hogarty, G. F., & Reiss, D. J. (1980). Family treatment of adult schizophrenic patients: A psycho-educational approach. Schizophrenia Bulletin, 6(3), Attkisson, C. C. (1987). Client satisfaction questionnaire (CSQ-8). In K. Corcoran & J. Fischer (Eds.), Measures for clinical practice: A sourcebook (3rd ed., Vol. 20). New York: Free Press. Corrigan, P. W., Mueser, K. T., Bond, G. R., Drake, R. E., & Solomon, P. (2008). Family interventions. In Principles and practices of psychiatric rehabilitation: An empirical approach (pp ). New York: Guilford Press. Dixon,L.,Lucksted,A.,Stewart,B.,Burland,J.,Brown,C.H.,Postrado,L.,McGuire,C., & Hoffman, M. (2004). Outcomes of the peer-taught 12-week family-to-family education program for severe mental illness. Acta Psychiatrica Scandinavica, 109, Gubman-Riesser, G., & Schorske, B. (1994). Relationships between family caregivers and mental health professionals: The American experience. In H. P. Lefly & M. Wasow (Eds.), Helping families cope with mental illness (pp. 3 26). Chur, Switzerland: Harwood Academic Publishers. Hoenig, J., & Hamilton, M. W. (1966). The schizophrenic patient in the community and his effect on the household. International Journal of Social Psychiatry, 12, Lehman, A. F., Kreyenbuhl, J., Buchanan, R., Dickerson, F. B., Dixon, L., Goldberg, R. W., et al. (2004). The Schizophrenia Patient Outcomes Research Team (PORT): Updated treatment recommendations Schizophrenia Bulletin, 30, Marsh, D. T. (1998). Serious mental illness and the family. The practitioner s guide. New York: John Wiley & Sons. McFarlane, W. R., & Dunne, E. (1991). Family psycho-education and multi-family groups in the treatment of schizophrenia. Directions in Psychiatry, 11(20) Mueser, K. T., & Glynn, S. M. (1999). Behavioral family therapy for psychiatric disorders (2nd ed.). Oakland, CA: New Harbinger Publications. NAMI. (2006). The New Jersey State family support plan for families of persons with a serious mental illness. North Brunswick, NJ: NAMI New Jersey. Retrieved January 1, 2011, from NJDHS. (1988). Policy paper. Guidelines for comprehensive psychoeducational programming for families of the mentally ill. Unpublished report. NJDHS. (1995). Towards a part of the community. A plan for expanding and strengthening of community mental health services and consolidating state hospital inpatient resources. Trenton, NJ: NJ Department of Human Services. Pharoah, F., Mari, J., Rathbone, J., & Wong, W. (2010). Family intervention for schizophrenia. Cochrane Database of Systematic Reviews 2010, Issue 12. Art. No. CD doi: = CD pub3

20 Intensive Family Support Services 43 Reinhard, S. C., Gubman, G. D., Horwitz, A. V., & Minsky, S. (1994). Burden Assessment Scale for families of the seriously mentally ill. Evaluation and Program Planning, 17(3), Riesser, G., Minsky, S., & Schorske, B. (1991). Intensive Family Support Services: A cooperative evaluation. A Bureau of Research and Evaluation report. Trenton, NJ: Department of Human Services, Division of Mental Health and Hospitals. SAMHSA. (2009). Family psychoeducation: Evidence based practices kit. Retrieved December 23, 2010, from Schorske, B. (2000). America s best innovations 2000 application. Intensive Family Support Services. Unpublished manuscript. Schorske, B., & Riesser, G. (2003, February). Incorporating evidence-based practices for families within a state s core mental health system: A decade of experience in New Jersey. Paper presented at NASMHPD Research Institute s 13th Annual Conference on Services Research and Evaluation: Developing an Evidence-Based Culture to Reform Systems, Baltimore, MD, February 9 11, 2003.