Partnerships in Employment: Building strong coalitions to facilitate systems change for youth and young adults

1.1Lack of collaboration between key players

Interagency collaboration is well established as a predictor of employment outcomes during transition (Haber et al., 2016). Despite mandates for collaboration in legislation such as the Individuals with Disabilities Education Act (2004) and the Workforce Innovation and Opportunities Act (2014), insufficient linkages between the education, rehabilitation, and adult IDD systems are a primary factor in the employment outcomes of youth with IDD (Certo et al., 2008; Martinez et al., 2010; NCD, 2008, Plotner & Marshall, 2015, Haber et al., 2016). Research reveals a need for defined collaboration models and roles between education and rehabilitation professionals (Stevenson & Fowler, 2016; Oertle & Seader, 2015). Hart, Zimbrich, and Whelley (2002) identify five major barriers to increased coordination: Partnerships are seldom effective both at the state and local levels; mechanisms for information-sharing and shared service delivery are uncoordinated; there is a lack of resource mapping at the state and local level; gaps in service delivery exist; and there is a lack of student and family-professional partnerships.

1.2Inadequate emphasis on community employment

Adult systems continue to make limited investments in employment outcomes. The number of overall VR agency closures into employment for individuals with ID declined slightly but steadily over the past decade (Butterworth et al., 2016). In FY2014 state IDD agencies reported that 19.1% of adults who participated in a day service received integrated employment supports, and only 11% of funds for day and employment services were directed to integrated employment (Butterworth et al., 2016). Data for 2014-2015 from the National Core Indicators Project suggest that only 14.8% of working age adults work in integrated employment (Human Services Research Institute & Institute for Community Inclusion, 2016). At the same time, participation in non-work services has grown steadily, suggesting that employment continues to be viewed as an add-on service rather than a systemic change (Mank, Cioffi, & Yavanoff, 2003; Butterworth, et al., 2015).

1.3Family factors

Family engagement is a key component in successful transition planning, with a focus on building relationships and information sharing between families and professionals. However, parents report that they do not receive adequate information to support their children in the transition process, that programs are a poor fit for student needs, and that they have insufficient information about the interaction of work and benefits (Hetherington et al., 2010; Almutairi, 2016; Winsor, Butterworth, Lugas, & Hall, 2010; Hall & Kramer, 2009; Luecking & Wittenburg, 2009). Carter et al. (2011) found that the family factor most predictive of paid work experiences in school was parental expectations, but families frequently experience low expectations and support from school programs (Blustein, et al., 2016; Henninger & Taylor, 2014; Almutairi, 2016).

1.4Education system factors

Confirming findings from previous research, Carter et al. (2011) found that many students with severe disabilities lack early vocational experiences. Other education system factors include: teacher expectations of students working (Carter et al., 2010), limited professional development related to transition practices (Mazzotti & Plotner, 2016; Winsor et al., 2010), lack of long term follow-up of graduates following transition to employment (Rusch & Braddock, 2004; Callahan et al., 2014) and limited diffusion of evidence based transition practices in schools (Mazzotti & Plotner, 2016).

1.5History of the Partnerships in Employment project

The Administration on Developmental Disabilities, now the Administration on Intellectual and Developmental Disabilities (AIDD) in the Administration on Community Living, issued an announcement in 2011 soliciting proposals from state consortia to support systems change with an explicit focus on policies, infrastructure, and collaboration across state agencies and other stakeholders. Responding to concerns about inadequate collaboration and systems commitment to competitive integrated employment, the request for proposals stated that, “The purpose of this effort is to enhance collaboration across existing State systems, including programs administered by State Developmental Disabilities agencies, State Vocational Rehabilitation agencies, State Educational agencies and other entities to increase competitive employment outcomes for youth and young adults with DD, including ID.” Specific objectives were,

The project was unique because of its focus on policy change, resolving systemic barriers, and enhancing collaboration. States were required to form a consortium that included at minimum (but not limited to) the state Developmental Disabilities Council, Vocational Rehabilitation agency, Developmental Disabilities agency, and Education agency, and to implement a memorandum of understanding prior to application. Six states were funded in 2011, and two were funded in 2012 (see Table 1). In all states either the AIDD funded Developmental Disabilities Council or University Center for Excellence served as the grantee and manager for the initiative.

1.6Evolution of project expectations

A significant challenge during the first year of the project was clarifying AIDD’s goals. For the first 6 states, substantial commitments were made in the proposed work plans to focus on local demonstration and pilot initiatives aimed at increasing employment outcomes for youth and young adults with IDD. However, AIDD clarified in year one that the anticipated outcomes were changes in policy and infrastructure at the systems level that would support high quality employment outcomes, rather than increasing individual job outcomes. While the pilot initiatives continued in states, state projects were asked to shift emphasis toward developing or adapting state policies. Due to this shift in focus, the two states that were awarded 2nd round funding were not required to include pilot demonstration projects as part of their work plans.

The role of the existing pilot projects shifted to using them as a platform for identifying and prioritizing systems change outcomes. Instead of focusing on demonstrating success at the local/regional level, states prioritized scaling up sustainable models for transition-to-work which could then be leveraged to inform systems collaboration and policy at a state level. This required bringing state agency representatives together at both the local/regional and statewide levels.

Additionally, the emphasis on policy change created challenges for some states, who did not initially have state agency representatives with that level of decision making authority participating in Consortium meetings. Although VR, IDD and Education state agencies signed a Memorandum of Understanding, which was a requirement for a state to apply for a PIE grant, some of the state agencies were not totally supportive when their Consortium began to recommend changes that would impact their agencies’ operations. Larger states with more complex governmental infrastructures, such as California and New York, were at a disadvantage due to a lack of existing mechanisms for statewide interagency collaboration and an enhanced need to focus on relationship building and trust between partners. Other states, such as Alaska, Wisconsin and Tennessee, entered the project with existing coalitions and long-standing relationships among a variety of stakeholders making the shift towards systems change easier to navigate. Still other states, such as Mississippi, Missouri and Iowa, had developed work plans that were grounded in grass roots involvement and local capacity building and needed to explore ways to connect local coalitions with the work of systems change at the state level.

As the PIE project progressed, states had opportunities to explore ways to collaborate across multiple and simultaneous systems-level initiatives. The Office of Disability Employment Policy’s Employment First State Leadership Mentor Program (EFSLMP) began the same year as PIE, with Iowa and Tennessee selected as prote´ge´ states. Early in Year 2, just after Tennessee joined the PIE project, the PIE and EFSLMP states held a joint summit to share lessons learned and explore opportunities for collaboration. Two additional PIE states, Missouri and New York, later applied to become EFSLMP states as the PIE project began to wind down in an effort to maintain the momentum of systems change efforts in progress. Additionally, the Promoting the Readiness of Minors in Supplemental Security Income (PROMISE) projects launched mid-way through the PIE project funding cycle, and were awarded to three of the PIE states including California, New York and Wisconsin. These 5-year research projects aim to increase economic independence of youth receiving SSI and their families through a focus on enhancing service coordination and engagement of state education systems in promoting transition-to-work outcomes. However, the level of collaboration between PIE and PROMISE initiatives greatly varied by state.

Having multiple systems change initiatives operating in parallel created an environment in which state agencies, regardless of their initial intent or willingness to focus on addressing policy and infrastructure barriers, had no choice but to look at systems change from both a top-down and bottom-up approach. This allowed for great flexibility for PIE states to adapt approaches to pilot demonstrations and larger systems change deliverables to move states towards Employment First policies. Individual state projects also embedded or collaborated with national initiatives including Cincinnati Children’s Hospital’s Project SEARCH and the U.S. Department of Education’s Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) projects.

1.7Policy context/timeline

Attention to state policy development was heightened due to swift and far-reaching federal policy actions that occurred simultaneously with the first PIE project phase, 2011–2016. On September 16, 2011, the Centers for Medicare and Medicaid Services (CMS) issued an Informational Bulletin providing guidance for employment and day services (CMS, 2011). This bulletin updated core service definitions, created new services to better reflect best practices, and emphasized the importance that employment plays in the lives of individuals with disabilities. Included in the bulletin were statements that underscored person centered planning as a component in employment services, and the important clarification of pre-vocational services as a time-limited service which can be used toward competitive employment. Most importantly, the bulletin defined the employment outcome as individual competitive integrated employment.

Three years later, CMS issued a Home and Community Based Services (HCBS) Settings Rule which has had substantial impact upon individuals, state agencies, and provider organizations. CMS was clear in its intentions: those receiving HCBS services under a Medicaid Waiver would have “full access to the benefits of community living and the opportunity to receive services in the most integrated setting appropriate” (2014). States were required to submit a transition plan by March 2015 that detailed how they would address compliance with the new rules, and to be in full compliance by March 2019.

Also in 2014, President Barack Obama signed the Workforce Innovation and Opportunity Act (WIOA). The legislation included amendments to the Rehabilitation Act and contained language that underscores the importance of transition to employment for youth with intellectual disabilities. WIOA addresses many of the challenges that the PIE projects were learning about and recommended some of the same policy changes that PIE states were attempting to resolve within their states with their state legislators, schools, VR agencies and service providers. However, the WIOA codified these changes, placing PIE projects in the position to advocate for its implementation. WIOA recognizes that youth with disabilities should have opportunities to learn and practice marketable skills by exploring real-work environments that will pave their way towards careers. It specifies state VR’s responsibility to support pre-employment transition services; it allows State VR agencies to prioritize serving students with disabilities, and it dedicates half of the Federal Supported Employment program funds to provide youth with the most significant disabilities with the supports they need, including extended services, to enable them to obtain competitive integrated employment (DOE 2014). WIOA clarifies the definition of competitive integrated employment as the desired outcome of VR and workforce services, and establishes rules under Section 511 that address participation in subminimum wage employment.

Olmstead cases in Rhode Island and Oregon drew considerable state attention. The State of Rhode Island agreed to a Settlement and Consent Decree with the United States Department of Justice in 2013 and 2014 after an investigation found that the State had violated the Americans with Disabilities Act by failing to serve individuals with IDD in integrated settings and placing youth with IDD at serious risk of segregation. The agreement binds Rhode Island to transform its service system over a 10-year time and includes annual benchmarks, and serves as precedent for other states. Meanwhile, another employment case between the State of Oregon and the Department of Justice was settled in December 2015. A class of individuals with IDD sued the state (Lane v. Brown) stating that it failed to provide supported employment services for those who were segregated in sheltered workshops, in violation of the Americans with Disabilities Act. The agreement stated that the state would continue to reform its system including closing the “front door” or ending new admissions to workshops, certifying service providers, closer coordination between schools and post-secondary education or services, and increasing services resulting in competitive employment.

1.8Project outcomes

1.9Lessons learned

1.9.8State policy framework for transition

These lessons led to an expansion of the high performing states model to reflect the importance of intentional investment in relationships and connecting activities that link stakeholders across state governmental systems change, local implementation, and advocacy (see Fig. 1).

Fig.1

State policy framework for transition.

1.10Overview of the issue

This issue reflects the investment of the members and stakeholders in the AIDD Partnerships in Employment initiative in systems change that creates sustainable and meaningful policy and infrastructure at the state level, and supports quality employment outcomes and implementation of effective practices at a local level. The initiative was remarkable for the level of commitment by participants not only to their own work plan, but to participating in and supporting a community of practice that openly shared challenges, strategies, and successes, and extended lessons learned to policy recommendations and advocacy at the federal level. Articles that follow address a cross state analysis of the project by the evaluation team and project officer, and a detailed description of the approach used by each participating state. States provide background and state context for their initiative, their project structure and goals, action plans, outcomes, how they addressed sustainability, and lessons learned. Collectively these represent a rich investment in true systems change.