PROMISE: Lessons learned from six model demonstration projects through the Promoting Readiness of Minors in Supplemental Security Income Project

The overarching goal of the PROMISE initiative was to improve the provision and coordination of services and supports for youth SSI recipients and their families to enable them to achieve improved outcomes related to education and employment. Research based strategies were utilized and tested to improve the education and career outcomes of low-income youth with disabilities receiving SSI and their families. These outcomes include graduating from high school ready for college and a career; completing postsecondary education and/or job training; obtaining competitive, integrated employment; and, as a result, achieving long-term reductions in the youth recipients’ reliance on SSI. Improving these outcomes for SSI youth and families is a highly complex goal influenced substantively by the varied state policy and service delivery contexts within which the PROMISE Model Demonstration Projects (MDPs) were conducted. Each of the MDPs was characterized by high degrees of state and local control with significant variation across and within states in service delivery capacity.

Improving these outcomes for SSI youth and families is a highly complex goal influenced substantively by the varied state policy and services delivery contexts within which the PROMISE Model Demonstration Projects (MDPs) were conducted.

In our evaluation of the MDPs, we sought to work with project directors and related project leadership staff to identify key elements and themes stemming from their multi-agency partnerships that they viewed as contributing to positive change. While we attempted to identify and report findings that were common across projects, the richer data obtained came directly from individual MDPs. In order to capture the dynamic nature of the MDPs, we relied on project director accounts of change, supported with documentation such as annual performance reports, project director meeting summaries, focus group results, and other evidence.

It was evident, based on PROMISE project leadership and director reports, that change evolved slowly in each of the states, dependent upon the political, economic, and social context within the state and the nature and complexity of the existing system. We heard repeatedly from the MDPs that the five-year period of funding was highly beneficial in initiating state-level change processes but may not be sufficient to bring about long-term, sustained change. It was evident that by the fourth and fifth years of their projects, MDPs had made an impact in making a number of improvements in state-level administrative practices, interagency collaboration, and service delivery practices. However, translating these state-level changes and positive developments to impact regional and local communities will require, for many states, longer periods of time, surpassing the five-year federal funding cycle of the MDPs. A specific lesson learned is that implementing long-term change and systemic reform is not a time-limited process. The timeframe during which systems change takes place and actually results in large-scale impact for youth with disabilities and their families, particularly as it relates to influencing regional and local areas within states, will surpass the five-year funding cycle of the MDPs.

The following sections – “PROMISE: Lessons About Partnerships” and “PROMISE: Lessons About Core Service Components” – identify 12 of the lessons learned regarding the six MDP partnerships and services they provided to SSI youth and families. The discussion, in some cases, reflects approaches and strategies that are common across the MDPs; others are unique to individual MDPs but were viewed as important to share.

... the most essential step in achieving effective service planning and coordination leading to improvements in outcomes for SSI youth and families is an explicit articulation of clearly stated and consistent values and beliefs about these youth and their families.

PROMISE: Lessons About Partnerships

The PROMISE initiative requirement that each MDP establish formal partnerships with agencies and organizations in their states had a substantial role in the development and implementation of policies and practices affecting youth SSI recipients and their families in achieving positive education and employment outcomes, and reducing their dependency on SSI benefits. The formation of these partnerships included specified membership of state agencies and organizations that: (1) established formal memoranda of understanding (MOUs) or other formal agreements to guide project implementation; (2) developed implementation plans designed to increase the capacity of existing services and use project funds to address identified gaps in current services; (3) shared resources and information on SSI youth and families (as applicable with federal and state laws and regulations) with partner agencies to support the coordination of services; (4) fully engaged local education, workforce, and other agencies statewide in project implementation efforts; and (5) engaged in ongoing project evaluation. This was a highly complex set of requirements that each MDP faced in creating the conditions necessary to create positive change. Five lessons are useful in examining this MDP partnership requirement.

1. Shared values and beliefs regarding the capacity of SSI youth and families to achieve positive outcomes need to be articulated

The first and perhaps the most essential step in achieving effective service planning and coordination leading to improvements in outcomes for SSI youth and families is an explicit articulation of clearly stated and consistent values and beliefs about these youth and their families. Historically, factors such as ineffective interagency collaboration, gaps in existing services, and conflicting service eligibility requirements have been identified as barriers to engaging SSI youth and their families on a path to postsecondary education, employment, and independence as adults. There are other factors that have impeded progress in achieving these goals, as well. Low expectations held by parents, educators, workforce development professionals (i.e. rehabilitation counselors, case managers, support staff), and youth themselves regarding the capacity of these young people to achieve integrated, competitive employment goals were recognized across the six projects. MDP directors reported that the belief that all SSI youth can work with the right supports and services was not universally held across state, regional, and local contexts. The lesson was that MDP staff had to reinforce this message by building awareness through youth employment success stories, parent and professional training programs, coaching, counseling and other strategies throughout the project.

2. Partnerships are key to achieving results; however, the complexity of managing these partnerships is challenging.

Achieving effective levels of interagency collaboration through the MDP partnerships was challenging. The formation of the partnerships required the extensive involvement of state agencies in special education, vocational rehabilitation, workforce development, Medicaid services, Temporary Assistance to Needy Families (TANF), intellectual and developmental disability (IDD) services, and mental health services. In addition to these member agencies, the MDPs also involved other agency partners (e.g., housing, transportation, juvenile justice, general education, and others) to support aspects of project service implementation. The size of these partnerships added challenges in fundamental tasks, such as scheduling and convening meetings, maintaining effective levels of communication among partnership members, and attempting to resolve program issues through the full complement of partnership members.

In recognition of this concern, several MDPs developed alternative committee structures to support decision-making and the management of project implementation activities. The Maryland MDP established an internal management team consisting of lead program staff from their three primary partners (Maryland Department of Disability, Way Station, and TransCen). These partners were able to meet biweekly regarding program operations, thus facilitating more frequent communication and decision-making. Similarly, the Wisconsin MDP established an executive oversight and steering committee as their management structure. The oversight committee was composed of key agency leadership staff who were in the best position to make decisions regarding agency commitments, staff deployment to support project activities, and statewide publicizing of the program. This is not intended to diminish the importance of the broader partnerships, but rather illustrates a management strategy that can help to facilitate multi-faceted interagency collaboration efforts.

...not everyone involved in providing services to these youth and families held common and consistent values and beliefs regarding their capacity to achieve meaningful employment and/or educational outcomes.

3. Memorandums of understanding (MOUs) and interagency agreements are useful in delineating initial aspects of shared agency responsibility, but they have limitations in how they are used on an ongoing basis.

For decades, the requirement that agencies engage in the development of MOUs and/or interagency agreements has been stated within federal legislation in the fields of education, workforce development, and health and human services. In our interactions with PROMISE project directors, debates regarding the usefulness of these interagency agreements in supporting implementation efforts was noted. The typical approach to the development of MOUs and interagency agreements was to document existing legal mandates and responsibilities of agencies, still leaving considerable ambiguity regarding key responsibilities needed to achieve more precise service outcomes for SSI youth and families. Consequently, these MOUs and interagency agreements were more descriptive than prescriptive. That is, to support a multi-agency effort to address the education and employment needs of SSI youth and families, interagency agreements should clearly specify the roles and responsibilities of each agency in relation to: (1) procedures for outreach to and identification of SSI recipients; (2) roles and financial responsibilities of each agency in providing key interventions and services; (3) provision for consultation and training essential for ensuring that professionals involved have the knowledge and skills to implement key project services; and (4) adequate timelines to ensure key staffing, legal authority, and scope. There was variation in how projects addressed MOUs and accounted for changes in state agency leadership, processing of requests, and other organizational requirements that affected data sharing. There is also an empirical question as to whether the agreements contain explicit objectives reflecting tangible expected results or merely designate and describe lead agency status and functions for specific services or service coordination. In addition to state MOUs, many projects also managed additional local agency level and/or provider MOUs with contractors to ensure all aspects of PROMISE services and data collection were adhered to. The lesson learned is that, given the time and resources required to develop MOUs and interagency agreements, these agreements need to have functional utility in terms of guiding key stakeholder agencies in the partnership toward specified responsibilities and outcomes, and these agreements need to be evaluated and renewed periodically to ensure their relevance.

4. Allowing for flexibility in the development and implementation of state action plans is a necessary and valued strategy to address specific state, regional, and local needs.

While each MDP was required to address the specific objectives and activities of the authorizing legislation and request for proposals, it was apparent very soon after receiving funding approvals that projects would need to slightly adapt project measures and activities to best meet the culture of the youth and families receiving services. Most requests for modifications, included expanding partnership members, increasing the number of case managers, and other nominal requests primarily occurred during the first 12 months of operation.  Any additional changes throughout the life of the project were reviewed by project officers and other federal partners as needed. Modifications were needed by projects to adapt to changes in political, social, and economic developments or respond to new initiatives, such as the enactment of the WIOA and its provisions regarding youth programs and Pre-ETS.  However, modifications mentioned did not affect the fidelity of the PROMISE intervention model. Flexibility was also needed to adjust and respond to specific regional or local issues and needs. This was reported by the project directors of the Arkansas, Maryland, and ASPIRE MDPs. In Maryland, the PROMISE project plan informed their various state agency plans, and modifications and adjustments were made as new federal guidelines were released. In Arkansas, for example, 50 individuals were employed to serve as connectors (case managers). Many of these individuals did not have experience with the SSI program and/or transition services. This required a considerable up-front investment in training, which may have delayed certain aspects of early service provision. ASPIRE worked with several Native American tribes to seek their approval to reach out to families and SSI youth. This required substantial additional time to develop relationships and trust and to gain approval to proceed. Service delays beyond the 2.5-year enrollment period were experienced but were necessary to achieve a working partnership. 

To productively engage in the sharing of information across education, workforce development, and human service agencies, the MDPs had to develop close working relationships with families to secure consent for the release of information to be shared, potentially, with multiple agencies.

5. Sharing information about SSI youth and families across agency boundaries remains a significant challenge.

The capacity to share information across state, regional, and local agencies about SSI youth and families was an ongoing challenge for the six MDPs. The MDPs were required to establish procedures to ensure that personally identifiable information from education records was exchanged among the partners to support the development of individualized service plans and, in doing so, comply with applicable federal laws (e.g., Family Educational Rights and Privacy Act and IDEA confidentiality information provisions). The fundamental importance of this is that the determination of appropriate educational and employment services must be based directly on valid and reliable information regarding the characteristics and needs of the SSI youth and family. To productively engage in the sharing of information across education, workforce development, and human service agencies, the MDPs developed close working relationships with families to secure consent for the release of information to be shared with multiple agencies. Information sharing and coordination for systems alignment for youth and families took substantial time. The MDPs developed varied responses to address this challenge. The best approach, based on discussions with project directors, was the development of explicit information-sharing plans and/or specific stipulations placed into MOUs or interagency agreements to facilitate the exchange of information on SSI youth and families among MDP partners.

PROMISE: Lessons About Core Service Components

The MDPs were to develop and implement a coordinated set of services and interventions for the SSI youth and families designed to improve educational and employment outcomes. At a minimum these services included case management, benefits counseling, career and work-based learning experiences, and parent training and information.  PROMISE case management focused on wholistic support across systems, including coordination with smaller caseloads and contextual knowledge of the youth and family. These services were to be planned and implemented based on the best available evidence as to the effectiveness of these services in producing positive results. The MDPs also involved youth and families in other services such as self-advocacy and self-determination training, independent living skills training, financial literacy training, postsecondary education orientation programs, and others. These additional services were coordinated with existing service providers or developed and implemented directly by the MDPs. The following set of seven lessons demonstrates the highly collaborative and wholistic nature of the PROMISE services, which required staff who could navigate the needs of youth, families, and various agencies. These lessons also represent the importance of a strengths-based and youth-centered approaches to services and supports.

One of the most substantial investments of project funds involved outreach to identify, recruit, and engage SSI youth and families early enough in the project to initiate the type and level of planning needed to support their future employability and independence.

1. Maximizing the capacity of existing services to serve SSI youth and families is an important step toward the sustainability of improved service delivery.

One of the requirements of the PROMISE initiative was to maximize use of existing special education, vocational rehabilitation, workforce development, and other state, county, and local agency programs and services. Several agencies (e.g., vocational rehabilitation, community-based employment programs) reported operating at full capacity and/or maintained waiting lists for services prior to the initiation of the MDP start-up. The increased enrollments of SSI youth placed an additional tax on already limited service delivery capacity. Measures were taken, however, to provide additional project funds to increase the capacity of these service delivery partners to serve SSI youth and families. This was viewed as cost-effective and a strategy for enhancing the capacity of these agencies to serve youth and families. The extent to which some or all services can continue to be made available to these SSI youth and families beyond the period of federal funding is unknown.

Specialized services to address gaps in current services were also developed. For example, there currently is no systematic process to link or refer SSI youth to other programs (U.S. Government Accountability Office, 2017). Most of the MDPs needed to invest in staff who held a specific responsibility for recruiting and engaging SSI youth and families. Recruiting and engaging SSI youth and families from predominantly rural areas was particularly challenging.  All MDPs employed case managers. The sustainability of these specialized services beyond the period of federal funding also remains in question. One of the most substantial investments of project funds involved outreach to identify, recruit, and engage SSI youth and families early enough in the project to initiate the type and level of planning needed to support their future employability and independence.

2. Comprehensive training and technical assistance are necessary in supporting multidisciplinary approaches in serving SSI youth and families.

The MDPs were required to provide training and technical assistance to a broad range of project stakeholders, including required twice-a-year professional development trainings. The MDPs relied on a wide variety of staff, ranging from current education staff, workforce development professionals, benefits counselors, and case managers, to carry out specific project activities. Some new staff roles emerged in the MDPs. A significant investment was made in staff training, particularly during the first year of operation. Training models and approaches included formal workshops, mentoring and coaching strategies, multidisciplinary cross-training, professional learning communities, communities of practice, and others. The multidisciplinary cross-training, for example, was communicated as one of the most effective strategies in helping to foster and enrich the relationships necessary to address the multiple needs of SSI youth and families.  These were training situations in which education staff, workforce development counselors, case managers, and other project staff were trained on each other’s roles and responsibilities. This was acknowledged as an important training strategy to help support project staff in functioning effectively in a team environment.

3. A comprehensive, holistic case management service model is critical in achieving active and sustained SSI youth and family engagement.

MDPs planned and facilitated accessible, comprehensive services that brought multiple systems together with the SSI youth and family to develop an individualized plan to meet their educational and employment needs and, by doing so, to reduce their long-term dependence on SSI benefits. While each MDP used somewhat varied approaches in achieving this goal, its inherent value and benefit were embraced by all six projects. Case managers were primarily focused on outreach to recruit SSI youth and families, sharing information on project services, and providing case management support to connect youth and families with appropriate project services. Case management served the critical function of identifying service needs, developing service plans, and coordinating services across multiple agencies. This was necessary as the presence of a professional with direct responsibility for planning and coordinating individualized services across agencies is highly limited and represents a significant gap in the current delivery of services to youth and families. The MDPs have provided an important illustration of the critical value and importance of case management services and the use of person and family-centered approaches to planning and service delivery to youth and families. Models such as person-centered and family-centered approaches dominant in the field of intellectual and developmental disabilities, wrap-around services in behavioral health, and wholistic approaches in health care all have in common placing the youth and family in the center of support. What emerges is a relationship-based level of support that helps to build the trust between the case manager and youth and family. This is critically important to overcoming fears associated with the loss of child SSI benefits, and raising expectations regarding the youth’s capacity to become employed and achieve economic independence.

Multidisciplinary cross-training was communicated as one of the most effective strategies in helping to foster and enrich the relationships necessary to address the multiple needs of SSI youth and families.

4. Transition planning needs to begin early for SSI youth and families, not only to address youth’s educational needs, but also to plan and provide work experiences, develop social skills and positive behaviors, and develop skills for independent living.

The vast majority of SSI youth are provided services under IDEA with an IEP through their local school district. It is recognized, however, that some SSI youth are not on an IEP, and are therefore not receiving special education and related services. Some youth SSI recipients are served through a Section 504 plan, established under the Rehabilitation Act of 1973, and still others participate fully in the general education curriculum, receiving no specialized services or support. As noted earlier in this report, for students on an IEP, public agencies must comply with all applicable IDEA secondary transition requirements. This means that transition must occur no later than the first IEP to be in effect when the student turns 16 (or younger, if determined appropriate by the IEP team or state law) and include measurable postsecondary goals and the development of a plan for achieving these goals. The California and Maryland MDPs worked extensively with local special education programs, with PROMISE project staff serving in a consultative role to special education teachers. Serving youth between the ages of 14-16 years was a requirement of the PROMISE initiative, and this was demonstrated to be an important age range at which to begin the long-term planning necessary to engage these youth in early work experiences, the development of social skills and positive behaviors, and independent living skills. Initiating planning, or identifying alternative pathways to supports, at the younger age was also needed to secure post-school services and supports as extensive waiting lists for services were reported in virtually every MDP state.

5. When youth have a voice in transition planning and decision-making, they are more likely to be committed to future employment goals.

Involving SSI youth in discussions regarding their future goals and plans reflects the values of self-determination and shared responsibility (Johnson, 2012). Actively engaging and providing youth a meaningful role as decision-makers during transition planning meetings was expressed by the six MDPs as critically important. Self-determination – supporting youth in developing a vision of working and becoming more independent – was a key feature of the MDPs. Each MDP offered training, coaching, and web-based information to promote youth self-advocacy. Youth engagement has been discussed as a unifying construct in promoting positive levels of motivation and ownership of established goals. Research has suggested that youth, in general, are more motivated to perform tasks that they choose for themselves (Van Reusen & Bos, 1994). And, more recently, youth given the opportunity to express preferences for and engage in chosen activities are also likely to achieve better post-school outcomes (Shogren & Plotner, 2012).

Actively engaging and providing youth a meaningful role as decision makers during transition planning meetings was expressed by the six MDPs as critically important.

6. Developing culturally responsive approaches is essential in addressing the diversity of SSI youth and families within the PROMISE states.

The MDPs developed culturally-responsive approaches to program and service delivery. The projects developed broad outreach strategies to engage SSI youth and families from different racial and ethnic backgrounds, disabilities, and social and economic circumstances. Each of these identities holds unique cultural attributes and contexts. Cultural responsiveness has been primarily associated with race and ethnicity in terms of recognizing, understanding, and appreciating differences and in developing appropriate program and service delivery responses to embrace these differences. The MDPs clearly acknowledged this need in their outreach efforts. ASPIRE, for example, developed several strategies to reach and involve the Native American communities from its six state partners. Several MDPs worked with large numbers of youth and families from Hispanic/Latino communities, and all MDPs ensured case management staff reflected the diversity of the communities they were working within. Each MDP employed staff representing the racial and ethnic composition of these youth and families; developed project materials for limited or non-English speaking participants, as appropriate; and other strategies. And for many MDPs the project had to be strategic about customized supports and outreach for youth and families from rural and urban settings. In some cases, services had to be provided 1:1 as opposed to a group setting depending on the location or took on a different structure (i.e. family led connecting) based on preferences of the youth and families.

7. Providing accurate information to SSI youth and families on SSA work incentives and community services and supports required an interdisciplinary and collaborative approach.

Families and youth required information on: (a) the youth SSI redetermination process, (b) work incentives and benefits that SSA offers to promote employment, (c) the value and benefits of early planning for transition, (d) adult community services and how to access these services following graduation from school, and (e) available options for health insurance coverage. The MDPs used several strategies for sharing information (e.g. providing information through schools, workforce development agencies, human service offices, and other agencies). Collaboration with Parent Training and Information Centers (PTIs) was one important MDP strategy that engaged youth and families in connecting to information, resources, training, and support. These centers are part of a national network of centers funded through the U.S. Department of Education’s Office of Special Education Programs. Many of them have developed information resources on transition planning, SSA work incentives, and other information concerning the SSI program and health coverage. ASPIRE, New York, and Wisconsin contracted with PTIs to provide families with information on school and community agency services and supports. The California MDP provided parent training both directly and in partnership with their PTI and Family Resource Centers.

For school-age youth on IEPs, special education has the responsibility for sharing information and helping to connect students and families to needed educational and post-school services. This includes actively engaging youth and families to attend and participate in the IEP process. Several complications arise in relation to special education teachers and related services staff working with families and students with disabilities who are also SSI recipients. First, there is no formal means of communicating with special education staff if a student is receiving child SSI benefits. Special educators are often unaware that a student they are working with is on SSI, and this does not typically enter into discussions which occur during IEP meetings with parents and the youth. Second, special education teachers receive little or no training on employment and post-school services or provider supports and feel ill equipped to enter into such discussions with families. Third, their actual role in supporting families and youth in navigating these complex requirements is unclear unless such requests come formally from the parent/family as a request for information.  The integrated, collaborative approach utilized by MDPs attempted to address these system complications through increased communication on work incentives and community supports. The engagement of PTIs, LEAs, and local SSA offices, as contributors of information on work incentives and community services was valued and fostered across MDPs.

Multi-agency partnerships served as the foundation for bringing about positive change and creating new opportunities for youth and families.

Conclusion

The PROMISE initiative represented a significant opportunity to develop state and local capacity to support SSI youth and families in achieving the goals of employment and, ultimately, economic self-sufficiency. The lessons learned presented in this summary report identify several, but certainly not all, of the strategies that need to be considered by other states interested in addressing these same issues and concerns. Multi-agency partnerships served as the foundation for bringing about positive change and creating new opportunities for youth and families. Coordination, collaboration, alignment of services, and systems change became bywords of these partnerships. Systems change, however, is best viewed as a process; one that will take much longer to “fully” achieve. The services provided to SSI youth and families were structured to build on existing services as well as to create new options. Case management is singled out as one, multi-faceted service that was central to reaching out to and engaging youth and families in an array of transition planning, educational supports, employment, benefits counseling, and other social services. It is our goal that the lessons learned through this initiative can serve to guide other states seeking to provide SSI youth and families new opportunities for independence and economic well-being.