Psychiatric Rehabilitation Journal 2014, Vol. 37, No. 2, 148 –150
© 2014 American Psychological Association 1095-158X/14/$12.00 DOI: 10.1037/prj0000066
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Family Advocacy for the IPS Supported Employment Project: Accomplishments and Challenges Michael J. Cohen
Deborah R. Becker
MJC Health Solutions, LLC, Amherst, New Hampshire
Geisel School of Medicine at Dartmouth
Topic: A majority of people with serious mental illnesses want to return to work as part of their recovery, but access to effective employment services is limited. This report highlights the role that families can take to advocate for access to high-quality services for their relatives with mental illnesses. Purpose: This report summarizes major accomplishments of the family advocacy for the Individual Placement and Support (IPS) supported employment project, which is part of the Johnson & Johnson – Dartmouth Community Mental Health Program. Sources Used: This description draws on published literature related to the role of families on behalf of individuals living with serious mental health conditions and supported employment services. The experiences of family members as advocates for change are also included. Conclusions and Implications for Practice: Family teams can play a key role in changing public policy to increase access to evidence-based employment services and in promoting high-quality services at the local level in partnership with state mental health and vocational rehabilitation agency leaders responsible for employment services. In addition, family teams can educate their peers to better understand the role of work in recovery. Keywords: employment, family advocacy, IPS, recovery
federal vocational rehabilitation system, which did not improve collaboration (Noble, Honberg, Hall, & Flynn, 1997). The current project had a more positive approach of using family advocacy to improve access to effective employment services. Families have a unique perspective and have sometimes been dismissed by professionals. Although family members may not have knowledge of the research and nuances of evidence-based practices, they do want good services for their loved ones (Hatfield, 1989). What is important about the current project is that family advocacy groups bring expertise and determination that can be directed to make positive changes in the service delivery system. Returning to work and school are essential parts of recovery for many people living with mental illnesses. The Johnson and Johnson – Dartmouth Community Mental Health Program (Becker et al., 2011) increases access to evidence-based supported employment, also known as Individual Placement and Support (IPS). The Johnson & Johnson Program evolved into the IPS supported employment learning collaborative, focusing on implementation and subsequently program sustainability (Becker, Drake, & Bond, this issue). A key aspect of the learning collaborative is the expanded role of the different stakeholders, including state mental health leaders, state vocational rehabilitation leaders, family advocates, and consumer advocates.
Most mental health professionals and rehabilitation specialists recognize the role of the family in relation to the mental health of persons with serious mental illness, including combating stigma and prejudice, but also in contributing to the recovery of the relative and serving as allies in advocating for effective services (Dixon et al., 2010; Hatfield, 1989). In particular, families have been involved in advocacy through the National Alliance on Mental Illness (NAMI) since 1979. NAMI is a grassroots mental health advocacy organization in the United States advocating for a national investment in basic research on mental illness, parity for mental health care, increased affordable housing, training for law enforcement, and access to evidence-based services. Historically, families have not had an organized role in advocating for evidence-based employment services that help people in their recovery from serious mental illnesses. One role for families that has had some positive impact has been when local employment services have included families who identify potential employers based on their own employer connections (Gaal, vanWeeghel, van Campen, & Linszen, 2002; McFarlane et al., 2000). Families have also had an adversarial role in advocating for vocational services. For example, in 1997, NAMI published a controversial report highlighting the ineffectiveness of the state–
This article was published Online First March 24, 2014. Michael J. Cohen, MJC Health Solutions, LLC, Amherst, New Hampshire; Deborah R. Becker, Department of Community and Family Medicine and Psychiatry, Geisel School of Medicine at Dartmouth, Dartmouth Psychiatric Research Center. Correspondence concerning this article should be addressed to Michael J. Cohen, MA, CAGS, MJC Health Solutions, LLC, 4 Upper Flanders Road, Amherst, NH 03031. E-mail: [email protected]
Family Advocacy for IPS Supported Employment Project The Johnson and Johnson–Dartmouth Program created the family advocacy for IPS supported employment project to advance the roles of families in three primary ways. First, family advocates can educate IPS teams regarding the important roles that family can 148
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
FAMILY ADVOCACY FOR RECOVERY THROUGH EMPLOYMENT
play in the employment process on an individual basis. Families can offer unique information to include in the employment plan for their relative. For example, families may have information about ways their relative communicates with others which can be helpful in planning with the individual and communicating effectively with supervisors and individuals in the workplace. Family members typically know about the their family member’s strengths and interests, previous work history, and knowledge of employment opportunities in the community. Families may have information about other aspects of their relative’s life such as medications, sleep habits, motivation, and symptoms that may affect employment outcomes. Second, families can help educate other families and community members about the benefits of IPS supported employment and working. Third, family advocates can help promote expansion of IPS services into other communities in their state and help sustain services by advocating with the state legislature for policy and budgetary supports for IPS programs. The family advocacy project brings together people with a wide range of talents and capabilities and uses a broad definition of family that includes parents, siblings, partners, spouses, friends, or others identified by the consumer as interested in their recovery. The consent of the consumer is necessary for engaging family members to participate in the employment planning process. Starting in 2008, the Johnson & Johnson – Dartmouth Program has developed family advocacy teams in Alameda County (California), Connecticut, District of Columbia, Illinois, Kansas, Kentucky, Maryland, Minnesota, Missouri, Ohio, Oregon, South Carolina, Vermont, and Wisconsin. In 2013, Colorado and North Carolina were invited into the collaborative and are planning their family teams. Dartmouth Psychiatric Research Center organized family training with the following objectives: a) build a working team of family advocates for each state, b) identify the family team leader who would serve as the liaison between the team and Dartmouth Psychiatric Research Center, c) provide the team with a conceptual understanding of the practices and principles of IPS supported employment, d) learn about employment as a key component of the recovery process, and e) develop a work plan to guide the team’s education and advocacy initiatives. Each team received complimentary materials (e.g., brochures, posters, policy briefs) and a stipend to help cover costs of their activities. The family team leaders are hosted at the annual meetings and participate in bimonthly teleconferences to share their progress and challenges. The intent was to create a learning community among the family teams and to link those teams with the larger IPS learning collaborative. The family advocacy teams averaged 4.5 members ranging from 2 to 9 people. The family team leaders averaged 4.5 years tenure (from 2 to 10 years). Three leaders devoted 20 hours a week to the work of the family team and IPS advocacy, with the other four leaders averaging five hours a week (Bond et al., 2014).
Accomplishments to Date Each state/region instituted a session on employment and IPS supported employment at their respective state NAMI annual conferences. Many of these teams developed IPS brochures for outreach and education. Some of the state and regional family teams focused on systemic change and advocacy initiatives. The
149
Illinois team revised a chapter of the NAMI education curriculum (Family to Family) to include IPS and employment and to encourage families to ask for IPS as a service for their loved ones. The Maryland family team recognized the concern about the possibility of losing benefits when returning to work and developed a program in conjunction with trained benefit specialists to educate families about the benefit process, entitlements, and the impact of employment on these benefits. This program demonstrated the importance of working together with providers and finding solutions to family concerns that help them serve as a natural support network for their relative in IPS. Members of the Wisconsin family team participated in IPS supported employment fidelity review training and are now established members of state IPS fidelity teams conducting fidelity reviews at local sites. The Ohio team convened a day-long meeting on employment at the legislature for the Mental Health Caucus where information on IPS supported employment was provided and consumers told their personal stories about the benefits of work in their recovery. As the Ohio state legislature debates Medicaid expansion, many advocates have concluded that employment is an important underpinning of the rationale for expansion. To this end, the Ohio Commissioner of Health and Human Services has publicly spoken about the benefits of IPS supported employment. The family advocacy teams have been effective partners in lobbying their state legislatures for additional state funding for IPS. The Kentucky family team partnered with Kentucky Protection and Advocacy Services in persuading the Cabinet for Health Services to fund all 14 community mental centers to provide supported employment using state general block grant dollars. The Minnesota family team arranged an informational hearing with legislators of the Jobs and Economic Development Finance Committee. The testimony included information about the importance of work in the recovery of mental illness as told by the Executive Director of NAMI Minnesota, an individual receiving IPS, members of the provider community, and the state mental health authority. The following year the Senate Jobs and Economic Development committee heard a bill to increase funding for IPS. Additional one-time funding of $1.1 million was added in the final bill that was signed by the Governor. Using an approach that NAMI has pursued frequently for other issues, the family advocacy teams have also pursued mass media strategies to change public attitudes. The Oregon family team helped to produce two public service announcements. The first televised announcement informed local communities about IPS and the benefits of employment for people recovering from mental illness. The second announcement was targeted for employers to consider hiring people in IPS programs.
Lessons Learned for Sustainability Over the past four years we have identified strategies that are likely to help sustain the family advocacy for IPS supported employment project and on a larger scale the role of family advocacy regarding access to IPS supported employment. First, select a team leader who has the time and skills to continuously recruit family team members to carry out advocacy initiatives and provide guidance to the team members. Family volunteers typically devote a limited period of time to the project because they are
COHEN AND BECKER
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
150
dealing with their loved one’s course of illness and their own personal, family, and professional life matters. It is also important to plan for leadership change to sustain project continuity. Second, embed the project within the state or local NAMI organization to help provide infrastructure for staffing, financial assistance, and other efficiencies. The state NAMI executive directors typically have not assumed the team leader position, but have been important champions of employment and IPS supported employment. NAMI chapter leadership can integrate the project into the larger legislative and advocacy activities and can identify family members to specialize in the advocacy of IPS supported employment. Third, encourage leadership in the state NAMI chapters to advocate for NAMI National to embrace employment and IPS supported employment. Fourth, develop a clear work plan that is implemented, evaluated, and adapted over time. The plan needs to fit with the skill-set (public speaking, testimony, telling personal recovery stories) of the family members who are responsible for the education and advocacy, and incorporate advocacy for employment into existing NAMI educational programs, that is, Family to-Family, Peer-to-Peer. Fifth, ensure that family team members have information about IPS supported employment and a clear understanding of advocacy activities from which they can choose to participate. Sixth, offer a small stipend to help support education and advocacy activities along with educational material. Seventh, connect members of family advocacy teams to share information and new ideas through annual meetings and bimonthly teleconferences. Facilitating partnerships between the family state team leader and leaders from the state mental health authority and state vocational rehabilitation also supports a coordinated effort for funding and overseeing implementation. At the local level, the partnership of families, mental health agencies, and state vocational rehabilitation counselors occur through agency IPS steering committees and joint presentations to practitioners, IPS staff, families, and other community members. Project challenges included turnover in the family team leadership position. In some instances the leadership transition was successful, but there were also difficulties in finding a new family leader. Family team leaders who had difficulty recruiting family members either completed projects by themselves or activities were integrated as part of the NAMI state chapter. Volunteer organizations are vulnerable to a lack of followthrough by their members who are not being paid for their work, may not have all the requisite skills, and may fluctuate in their commitment. The IPS family advocacy groups are no different; they make contributions as a function of individual commitment and of their leadership.
Conclusions The family advocacy for IPS supported employment project, as part of the Johnson & Johnson – Dartmouth Community Mental Health Program, demonstrates that families have an important role in increasing access to IPS supported employment. At the state and
national level, families can influence public policy regarding employment services for people with serious mental illness. On a local level, families are a resource for advocating for high-quality services. Effective strategies include partnering with leaders from mental health services, state vocational rehabilitation, and NAMI. Lack of funding for IPS services continues to restrict access to services. Given the changes in health care with the implementation of the Patient Protection and Affordable Care Act many states are applying for or considering Medicaid waivers. Policymakers and advocates can influence those waivers so that Medicaid funds IPS services. NAMI National leaders can play a pivotal role in this endeavor and learn from the jurisdictions in the United States participating in the Johnson and Johnson – Dartmouth Program. NAMI National leaders can take on a greater role given their national reputation, legislative connections and interest in supporting recovery. Already, trained family members from the grassroots tell about their experiences with IPS, its benefits for improving individual lives, and promoting recovery for persons with serious mental illness.
References Becker, D. R., Drake, R. E., & Bond, G. R. (In press, this issue). The IPS supported employment learning collaborative. Psychiatric Rehabilitation Journal. Becker, D. R., Drake, R. E., Bond, G. R., Nawaz, S., Haslett, W. R., & Martinez, R. (2011). A national mental health learning collaborative on supported employment. Psychiatric Services, 62, 704 –706. doi:10.1176/ appi.ps.62.7.704 Bond, G. R., Becker, D. R., Drake, R. E., McHugo, G. J., Wilson, L., Peterson, A. E., et al. (2014). Preliminary report on Year 2 of the NIDRR sustainability study. Lebanon, NH: Dartmouth Psychiatric Research Center. Dixon, L. B., Dickerson, F., Bellack, A. S., Bennett, M., Dickinson, D., Goldberg, R. W., . . . Kreyenbuhl, J. (2010). The 2009 Schizophrenia PORT psychosocial treatment recommendations and summary statements. Schizophrenia Bulletin, 36, 48 –70. doi:10.1093/schbul/sbp115 Gaal, E., van Weeghel, J., van Campen, M., & Linszen, D. (2002). The trainee project: Family-aided vocational rehabilitation of young people with schizophrenia. Psychiatric Rehabilitation Journal, 26, 101–105. doi:10.2975/26.2002.101.105 Hatfield, A. B. (1989). Serving the unserved in community rehabilitation programs. Psychosocial Rehabilitation Journal, 13, 71– 82. McFarlane, W. R., Dushay, R. A., Deakins, S. M., Stastny, P., Lukens, E. P., Toran, J., & Link, B. (2000). Employment outcomes in familyaided assertive community treatment. American Journal of Orthopsychiatry, 70, 203–214. doi:10.1037/h0087819 Noble, J. H., Honberg, R. S., Hall, L. L., & Flynn, L. M. (1997). A legacy of failure: The inability of the federal–state vocational rehabilitation system to serve people with severe mental illness. Arlington, VA: National Alliance for the Mentally Ill.
Received October 31, 2013 Revision received January 10, 2014 Accepted February 25, 2014 䡲
© 2014 American Psychological Association 1095-158X/14/$12.00 DOI: 10.1037/prj0000066
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Family Advocacy for the IPS Supported Employment Project: Accomplishments and Challenges Michael J. Cohen
Deborah R. Becker
MJC Health Solutions, LLC, Amherst, New Hampshire
Geisel School of Medicine at Dartmouth
Topic: A majority of people with serious mental illnesses want to return to work as part of their recovery, but access to effective employment services is limited. This report highlights the role that families can take to advocate for access to high-quality services for their relatives with mental illnesses. Purpose: This report summarizes major accomplishments of the family advocacy for the Individual Placement and Support (IPS) supported employment project, which is part of the Johnson & Johnson – Dartmouth Community Mental Health Program. Sources Used: This description draws on published literature related to the role of families on behalf of individuals living with serious mental health conditions and supported employment services. The experiences of family members as advocates for change are also included. Conclusions and Implications for Practice: Family teams can play a key role in changing public policy to increase access to evidence-based employment services and in promoting high-quality services at the local level in partnership with state mental health and vocational rehabilitation agency leaders responsible for employment services. In addition, family teams can educate their peers to better understand the role of work in recovery. Keywords: employment, family advocacy, IPS, recovery
federal vocational rehabilitation system, which did not improve collaboration (Noble, Honberg, Hall, & Flynn, 1997). The current project had a more positive approach of using family advocacy to improve access to effective employment services. Families have a unique perspective and have sometimes been dismissed by professionals. Although family members may not have knowledge of the research and nuances of evidence-based practices, they do want good services for their loved ones (Hatfield, 1989). What is important about the current project is that family advocacy groups bring expertise and determination that can be directed to make positive changes in the service delivery system. Returning to work and school are essential parts of recovery for many people living with mental illnesses. The Johnson and Johnson – Dartmouth Community Mental Health Program (Becker et al., 2011) increases access to evidence-based supported employment, also known as Individual Placement and Support (IPS). The Johnson & Johnson Program evolved into the IPS supported employment learning collaborative, focusing on implementation and subsequently program sustainability (Becker, Drake, & Bond, this issue). A key aspect of the learning collaborative is the expanded role of the different stakeholders, including state mental health leaders, state vocational rehabilitation leaders, family advocates, and consumer advocates.
Most mental health professionals and rehabilitation specialists recognize the role of the family in relation to the mental health of persons with serious mental illness, including combating stigma and prejudice, but also in contributing to the recovery of the relative and serving as allies in advocating for effective services (Dixon et al., 2010; Hatfield, 1989). In particular, families have been involved in advocacy through the National Alliance on Mental Illness (NAMI) since 1979. NAMI is a grassroots mental health advocacy organization in the United States advocating for a national investment in basic research on mental illness, parity for mental health care, increased affordable housing, training for law enforcement, and access to evidence-based services. Historically, families have not had an organized role in advocating for evidence-based employment services that help people in their recovery from serious mental illnesses. One role for families that has had some positive impact has been when local employment services have included families who identify potential employers based on their own employer connections (Gaal, vanWeeghel, van Campen, & Linszen, 2002; McFarlane et al., 2000). Families have also had an adversarial role in advocating for vocational services. For example, in 1997, NAMI published a controversial report highlighting the ineffectiveness of the state–
This article was published Online First March 24, 2014. Michael J. Cohen, MJC Health Solutions, LLC, Amherst, New Hampshire; Deborah R. Becker, Department of Community and Family Medicine and Psychiatry, Geisel School of Medicine at Dartmouth, Dartmouth Psychiatric Research Center. Correspondence concerning this article should be addressed to Michael J. Cohen, MA, CAGS, MJC Health Solutions, LLC, 4 Upper Flanders Road, Amherst, NH 03031. E-mail: [email protected]
Family Advocacy for IPS Supported Employment Project The Johnson and Johnson–Dartmouth Program created the family advocacy for IPS supported employment project to advance the roles of families in three primary ways. First, family advocates can educate IPS teams regarding the important roles that family can 148
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
FAMILY ADVOCACY FOR RECOVERY THROUGH EMPLOYMENT
play in the employment process on an individual basis. Families can offer unique information to include in the employment plan for their relative. For example, families may have information about ways their relative communicates with others which can be helpful in planning with the individual and communicating effectively with supervisors and individuals in the workplace. Family members typically know about the their family member’s strengths and interests, previous work history, and knowledge of employment opportunities in the community. Families may have information about other aspects of their relative’s life such as medications, sleep habits, motivation, and symptoms that may affect employment outcomes. Second, families can help educate other families and community members about the benefits of IPS supported employment and working. Third, family advocates can help promote expansion of IPS services into other communities in their state and help sustain services by advocating with the state legislature for policy and budgetary supports for IPS programs. The family advocacy project brings together people with a wide range of talents and capabilities and uses a broad definition of family that includes parents, siblings, partners, spouses, friends, or others identified by the consumer as interested in their recovery. The consent of the consumer is necessary for engaging family members to participate in the employment planning process. Starting in 2008, the Johnson & Johnson – Dartmouth Program has developed family advocacy teams in Alameda County (California), Connecticut, District of Columbia, Illinois, Kansas, Kentucky, Maryland, Minnesota, Missouri, Ohio, Oregon, South Carolina, Vermont, and Wisconsin. In 2013, Colorado and North Carolina were invited into the collaborative and are planning their family teams. Dartmouth Psychiatric Research Center organized family training with the following objectives: a) build a working team of family advocates for each state, b) identify the family team leader who would serve as the liaison between the team and Dartmouth Psychiatric Research Center, c) provide the team with a conceptual understanding of the practices and principles of IPS supported employment, d) learn about employment as a key component of the recovery process, and e) develop a work plan to guide the team’s education and advocacy initiatives. Each team received complimentary materials (e.g., brochures, posters, policy briefs) and a stipend to help cover costs of their activities. The family team leaders are hosted at the annual meetings and participate in bimonthly teleconferences to share their progress and challenges. The intent was to create a learning community among the family teams and to link those teams with the larger IPS learning collaborative. The family advocacy teams averaged 4.5 members ranging from 2 to 9 people. The family team leaders averaged 4.5 years tenure (from 2 to 10 years). Three leaders devoted 20 hours a week to the work of the family team and IPS advocacy, with the other four leaders averaging five hours a week (Bond et al., 2014).
Accomplishments to Date Each state/region instituted a session on employment and IPS supported employment at their respective state NAMI annual conferences. Many of these teams developed IPS brochures for outreach and education. Some of the state and regional family teams focused on systemic change and advocacy initiatives. The
149
Illinois team revised a chapter of the NAMI education curriculum (Family to Family) to include IPS and employment and to encourage families to ask for IPS as a service for their loved ones. The Maryland family team recognized the concern about the possibility of losing benefits when returning to work and developed a program in conjunction with trained benefit specialists to educate families about the benefit process, entitlements, and the impact of employment on these benefits. This program demonstrated the importance of working together with providers and finding solutions to family concerns that help them serve as a natural support network for their relative in IPS. Members of the Wisconsin family team participated in IPS supported employment fidelity review training and are now established members of state IPS fidelity teams conducting fidelity reviews at local sites. The Ohio team convened a day-long meeting on employment at the legislature for the Mental Health Caucus where information on IPS supported employment was provided and consumers told their personal stories about the benefits of work in their recovery. As the Ohio state legislature debates Medicaid expansion, many advocates have concluded that employment is an important underpinning of the rationale for expansion. To this end, the Ohio Commissioner of Health and Human Services has publicly spoken about the benefits of IPS supported employment. The family advocacy teams have been effective partners in lobbying their state legislatures for additional state funding for IPS. The Kentucky family team partnered with Kentucky Protection and Advocacy Services in persuading the Cabinet for Health Services to fund all 14 community mental centers to provide supported employment using state general block grant dollars. The Minnesota family team arranged an informational hearing with legislators of the Jobs and Economic Development Finance Committee. The testimony included information about the importance of work in the recovery of mental illness as told by the Executive Director of NAMI Minnesota, an individual receiving IPS, members of the provider community, and the state mental health authority. The following year the Senate Jobs and Economic Development committee heard a bill to increase funding for IPS. Additional one-time funding of $1.1 million was added in the final bill that was signed by the Governor. Using an approach that NAMI has pursued frequently for other issues, the family advocacy teams have also pursued mass media strategies to change public attitudes. The Oregon family team helped to produce two public service announcements. The first televised announcement informed local communities about IPS and the benefits of employment for people recovering from mental illness. The second announcement was targeted for employers to consider hiring people in IPS programs.
Lessons Learned for Sustainability Over the past four years we have identified strategies that are likely to help sustain the family advocacy for IPS supported employment project and on a larger scale the role of family advocacy regarding access to IPS supported employment. First, select a team leader who has the time and skills to continuously recruit family team members to carry out advocacy initiatives and provide guidance to the team members. Family volunteers typically devote a limited period of time to the project because they are
COHEN AND BECKER
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
150
dealing with their loved one’s course of illness and their own personal, family, and professional life matters. It is also important to plan for leadership change to sustain project continuity. Second, embed the project within the state or local NAMI organization to help provide infrastructure for staffing, financial assistance, and other efficiencies. The state NAMI executive directors typically have not assumed the team leader position, but have been important champions of employment and IPS supported employment. NAMI chapter leadership can integrate the project into the larger legislative and advocacy activities and can identify family members to specialize in the advocacy of IPS supported employment. Third, encourage leadership in the state NAMI chapters to advocate for NAMI National to embrace employment and IPS supported employment. Fourth, develop a clear work plan that is implemented, evaluated, and adapted over time. The plan needs to fit with the skill-set (public speaking, testimony, telling personal recovery stories) of the family members who are responsible for the education and advocacy, and incorporate advocacy for employment into existing NAMI educational programs, that is, Family to-Family, Peer-to-Peer. Fifth, ensure that family team members have information about IPS supported employment and a clear understanding of advocacy activities from which they can choose to participate. Sixth, offer a small stipend to help support education and advocacy activities along with educational material. Seventh, connect members of family advocacy teams to share information and new ideas through annual meetings and bimonthly teleconferences. Facilitating partnerships between the family state team leader and leaders from the state mental health authority and state vocational rehabilitation also supports a coordinated effort for funding and overseeing implementation. At the local level, the partnership of families, mental health agencies, and state vocational rehabilitation counselors occur through agency IPS steering committees and joint presentations to practitioners, IPS staff, families, and other community members. Project challenges included turnover in the family team leadership position. In some instances the leadership transition was successful, but there were also difficulties in finding a new family leader. Family team leaders who had difficulty recruiting family members either completed projects by themselves or activities were integrated as part of the NAMI state chapter. Volunteer organizations are vulnerable to a lack of followthrough by their members who are not being paid for their work, may not have all the requisite skills, and may fluctuate in their commitment. The IPS family advocacy groups are no different; they make contributions as a function of individual commitment and of their leadership.
Conclusions The family advocacy for IPS supported employment project, as part of the Johnson & Johnson – Dartmouth Community Mental Health Program, demonstrates that families have an important role in increasing access to IPS supported employment. At the state and
national level, families can influence public policy regarding employment services for people with serious mental illness. On a local level, families are a resource for advocating for high-quality services. Effective strategies include partnering with leaders from mental health services, state vocational rehabilitation, and NAMI. Lack of funding for IPS services continues to restrict access to services. Given the changes in health care with the implementation of the Patient Protection and Affordable Care Act many states are applying for or considering Medicaid waivers. Policymakers and advocates can influence those waivers so that Medicaid funds IPS services. NAMI National leaders can play a pivotal role in this endeavor and learn from the jurisdictions in the United States participating in the Johnson and Johnson – Dartmouth Program. NAMI National leaders can take on a greater role given their national reputation, legislative connections and interest in supporting recovery. Already, trained family members from the grassroots tell about their experiences with IPS, its benefits for improving individual lives, and promoting recovery for persons with serious mental illness.
References Becker, D. R., Drake, R. E., & Bond, G. R. (In press, this issue). The IPS supported employment learning collaborative. Psychiatric Rehabilitation Journal. Becker, D. R., Drake, R. E., Bond, G. R., Nawaz, S., Haslett, W. R., & Martinez, R. (2011). A national mental health learning collaborative on supported employment. Psychiatric Services, 62, 704 –706. doi:10.1176/ appi.ps.62.7.704 Bond, G. R., Becker, D. R., Drake, R. E., McHugo, G. J., Wilson, L., Peterson, A. E., et al. (2014). Preliminary report on Year 2 of the NIDRR sustainability study. Lebanon, NH: Dartmouth Psychiatric Research Center. Dixon, L. B., Dickerson, F., Bellack, A. S., Bennett, M., Dickinson, D., Goldberg, R. W., . . . Kreyenbuhl, J. (2010). The 2009 Schizophrenia PORT psychosocial treatment recommendations and summary statements. Schizophrenia Bulletin, 36, 48 –70. doi:10.1093/schbul/sbp115 Gaal, E., van Weeghel, J., van Campen, M., & Linszen, D. (2002). The trainee project: Family-aided vocational rehabilitation of young people with schizophrenia. Psychiatric Rehabilitation Journal, 26, 101–105. doi:10.2975/26.2002.101.105 Hatfield, A. B. (1989). Serving the unserved in community rehabilitation programs. Psychosocial Rehabilitation Journal, 13, 71– 82. McFarlane, W. R., Dushay, R. A., Deakins, S. M., Stastny, P., Lukens, E. P., Toran, J., & Link, B. (2000). Employment outcomes in familyaided assertive community treatment. American Journal of Orthopsychiatry, 70, 203–214. doi:10.1037/h0087819 Noble, J. H., Honberg, R. S., Hall, L. L., & Flynn, L. M. (1997). A legacy of failure: The inability of the federal–state vocational rehabilitation system to serve people with severe mental illness. Arlington, VA: National Alliance for the Mentally Ill.
Received October 31, 2013 Revision received January 10, 2014 Accepted February 25, 2014 䡲
