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Opportunities for Improving Programs and Services for Children with Disabilities (2018)

Chapter: 6 Social and Human Capital Development: Programs and Services Outside of the School System

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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Suggested Citation:"6 Social and Human Capital Development: Programs and Services Outside of the School System." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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6 Social and Human Capital Development: Programs and Services Outside of the School System In Chapter 5, the committee discusses school-based programs that support the social and human capital development of children with disabilities to achieve positive outcomes related to achieving individual education goals, learning daily living skills, and improving communication and social skills. In addition to these outcomes, children and youth with disabilities require developmentally appropriate services to help them build skills for achieving individual long-term goals outside of educational settings. The current chapter examines services and programs with evidence to support their impact on social and human capital development outcomes related to employment and earnings, community participation, self-determination, and independent living. Promising programs, for which rigorous evidence is currently limited, are also introduced where appropriate. Although these outcomes focus largely on postsecondary life, evidence presented in Chapter 5 indicates that such services as self-determination or self-advocacy training could have positive near-term outcomes for children and youth, such as increased participation in goal setting and individualized education program (IEP) meetings. While acknowledging the near- term benefits of some of these services and programs, the present chapter focuses on how these services and programs lead to positive intermediate- and long-term outcomes during the transition from youth to young adulthood and beyond. The chapter focuses on strategies for improving the functional independence of young adults with disabilities and enabling them to become fully engaged members of their communities and on programs supporting the additional needs of children and families not met by disability-related programs and services. The chapter begins with a discussion of recent federal legislation and major programs and services aimed at providing youth and young adults with disabilities the assistance they require to secure and maintain competitive, integrated employment. This section also highlights promising transition interventions for helping youth transition to satisfactory employment after they leave school. Next, the chapter introduces programs and services related to independent living and community integration, including federal housing support programs designed to help individuals with disabilities access adequate, affordable housing in integrated community settings. Then, programs and services that advocate for the rights of children with disabilities and their families and provide assistance in accessing needed programs and services are discussed. Services and programs reviewed include systems-level advocates who petition the courts or work with Congress to secure disability rights, as well as advocates who assist individual youth and young adults through medical–legal partnerships, the juvenile justice system, or social programs. 6-1 PREPUBLICATION COPY: UNCORRECTED PROOFS

6-2 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES This is followed by a review of economic support programs that help individuals with disabilities meet the financial costs of their disability. Taken together, the services and programs outlined in this chapter exist to improve outcomes for individuals with disabilities as they navigate the transition to self-determined, independent living as adults in their communities. The final section presents the committee’s chapter-specific conclusions with respect to social and human capital development programs and services outside of the school system. VOCATIONAL REHABILITATION AND PRE-EMPLOYMENT PROGRAMS AND SERVICES The Workforce Innovation and Opportunity Act Since the concerted federal policy focus on transition from school to work began in earnest in the mid-1980s, there have been ongoing efforts to demonstrate, refine, and evaluate transition methodology (Luecking and Wittenburg, 2009). Beyond school-based transition programs and services, a number of programs and services exist to facilitate the transition to employment. The Workforce Innovation and Opportunity Act (WIOA),1 signed into law in 2014 to be in effect from 2015 to 2020, aligns education with the workforce. This act was intended to improve the quality of the workforce and earnings of workers, with special emphasis on out-of- school youth and youth with disabilities. WIOA amends the landmark Rehabilitation Act of 1973 (see Appendix D) to allow vocational rehabilitation (VR) agencies to use federal funds, as well as state, local, or private contributions, to coordinate pre-employment transition services with local education agencies (LEAs). WIOA outlined a critical need for youth and young adults to have additional opportunities to gain necessary skills for securing competitive employment.2 WIOA defines a “youth with a disability” solely by age (14–24), while a “student with a disability” is enrolled in school and receives transition beginning at, or before, age 16 as part of her or his IEP. At the federal level, transition-age youth (or “youth in transition”) is a designation that encompasses adolescents and young adults aged 16–24 who face special challenges in navigating the path to stable, satisfying independent living (Youth.gov). Under WIOA, schools, VR agencies, and government service agencies (e.g., Social Security Administration) share responsibility for promoting interagency collaboration among education, employment, and community-based services to ensure a seamless transition from the school system to the adult service and support system (RSA, 2016). WIOA aims to support private-sector investments in employment services, recruit underutilized populations into the workforce, and conduct VR activities. WIOA replaced the Workforce Innovation Act of 1998 and instituted a key change by making disability a core category eligible to receive all youth services. WIOA provides career exploration opportunities, support for completing education, and skills training for in-demand industries, with 75 percent of federal funding reserved for out-of-school youth aged 14–24. These services may disproportionately benefit youth with disabilities, as they are twice as likely to drop out of school as typically developing peers (DOL, 2017). 1 Public Law 113-128 (29 U.S.C. § 3101, et seq.). WIOA allocated funding for vocational training for individuals with disabilities through 2020 and transferred the Independent Living Program from the Department of Education to the Department of Health and Human Services. 2 29 U.S.C. 701 et seq. PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-3 All youth with disabilities aged 16–24 who are not attending school are eligible for out- of-school services (in-school services under WIOA are noted in Chapter 5). Youth employment services include internships, paid (integrated) work experiences, occupational skills training, and skills training for in-demand occupations. If necessary, substance abuse treatment and mental health counseling, or more involved mental health referrals, are provided. WIOA also emphasizes adult mentoring and follow-up services for a year after program completion. Local programs have the discretion to determine what specific services will be provided to a youth participant based on her or his strengths, interests, and personal goals, and to develop individual service strategies in partnership with the youth (Hoff, 2014). Under final WIOA rules, VR agencies are responsible for coordinating the needs of employers with the skills of job seekers who have disabilities to facilitate employment and connect clients with opportunities for education, training, and support they need to be successful in the workforce (OFCCP, n.d.). If job seekers require additional training to become eligible for competitive employment, VR agencies provide a regional variety of general education, language, and skills training services. WIOA improves services provided to individuals with disabilities by allowing for necessary physical and programmatic adaptations to enable clients to receive training and apply for jobs. Among its landmark changes, WIOA requires VR agencies to set aside 15 percent of their federal funds for pre-employment transition services for students with disabilities, which has promoted increased collaboration between state education agencies, local agencies, and VR agencies. Pre-employment transition services include job exploration counseling, work-based learning experiences (including in-school and after-school opportunities, or internships), counseling on postsecondary education programs, workplace-readiness training, and instruction on self-advocacy (WINTAC, 2016). A second major change enacted by WIOA was to extend the length of time that an individual with the most significant disabilities could receive pre- employment training services from 18 to 24 months, with special emphasis on training participants in integrated work settings (OSERS, 2016). Promising Interventions in Transition and Employment As discussed in Chapter 4, much of the research related to health care for children with disabilities has focused primarily on specific interventions or service domains. In the realm of social and human capital development, particularly as it relates to transition, research has focused primarily on the effects of various combinations of services across a variety of domains on health and functioning outcomes for children with disabilities, with much less research on individual service components. The National Collaborative on Workforce and Disability for Youth (NCWD/Youth) conducted an extensive review of research, demonstration projects, and acknowledged effective practices to develop a practical tool called Guideposts for Success (NCWD/Youth, 2005). The goal of this tool is to help practitioners and policy makers conceptualize optimum service delivery for youth with disabilities. Guideposts for Success outlines five primary developmental activity domains on which to focus to help youth transition successfully to adulthood: • school-based preparatory experiences, • career preparation and work-based experiences, • youth development and leadership, PREPUBLICATION COPY: UNCORRECTED PROOFS

6-4 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES • connecting activities, and • family involvement and supports. Each Guidepost lists specific needs of all children and additional specific needs of youth with disabilities; these are provided in Table 6-1. TABLE 6-1 Needs of Children and Youth, Including Those with Disabilities, Delineated in Guideposts for Success Component Examples School-based • Academic programs that are based on clear state standards preparation • Career and technical education programs based on professional and industry experiences standards • Curricular and program options that are based on universal design of school, work, and community-based learning experiences • Learning environments that are small and safe, including extra supports such as tutoring, as necessary • Supports from and by highly qualified staff • Access to an assessment system that includes multiple measures • Graduation standards that include options • Use individual transition plans to drive personal instruction, and use strategies to continue the transition process post-schooling* • Access to specific and individual learning accommodations while in school* • Knowledge of reasonable accommodations that they can request and control in educational settings, including assessment accommodations* • Support by highly qualified transitional support staff that may or may not be school staff* Career • Career assessments to help identify students’ school and postschool preferences preparation and interests and work • Structured exposure to postsecondary education and other lifelong learning experiences opportunities • Exposure to career opportunities that ultimately lead to a living wage, including information about educational requirements, entry requirements, income and benefits potential, and asset accumulation • Training designed to improve job-seeking skills and workplace basic skills (sometimes called soft skills) • Opportunities to engage in a range of work-based exploration activities, such as site visits and job shadowing • Multiple on-the-job training experiences, including community service (paid or unpaid) that is specifically linked to the content of a program of study and school credit • Opportunities to learn and practice work skills (“soft skills”) • Opportunities to learn firsthand about specific occupational skills related to a career pathway • Understand the relationships between benefits planning and career choices* • Learn to communicate disability-related work support and accommodation needs* • Learn to find, formally request, and secure appropriate supports and reasonable accommodations in education, training, and employment settings* PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-5 Component Examples Youth • Mentoring activities designed to establish strong relationships with adults development through formal and informal settings and leadership • Peer-to-peer mentoring opportunities • Exposure to role models in a variety of contexts • Training in skills such as self-advocacy and conflict resolution • Exposure to personal leadership and youth development activities, including community service • Opportunities that allow youth to exercise leadership and build self-esteem • Mentors and role models, including persons with and without disabilities* • An understanding of disability history, culture, and disability public policy issues as well as their rights and responsibilities* Connecting • Mental and physical health services activities • Transportation • Tutoring • Financial planning and management • Postprogram supports through structured arrangements in postsecondary institutions and adult service agencies • Connection to other services and opportunities (e.g., recreation) • Acquisition of appropriate assistive technologies community orientation and mobility/travel training (e.g. accessible transportation, bus routes, housing, health clinics) * • Exposure to post-program supports such as independent living centers and other consumer-driven community-based support service agencies* • Personal assistance services, including attendants, readers, interpreters, or other such services* • Benefits-planning counseling, including information regarding the myriad of benefits available and their interrelationships so that youth may maximize those benefits in transitioning from public assistance to self-sufficiency* Family • Have high expectations that build upon the young person’s strengths, interests, Supports and needs and fosters his or her ability to achieve independence and self- (Parents, sufficiency families, and • Are involved in their lives and assisting them toward adulthood other caring • Have access to information about employment, further education, and adults who) community resources • Take an active role in transition planning with schools and community partners • Have access to medical, professional, and peer support networks • Have an understanding of the youth’s disability and how it may affect his or her education, employment, and daily living options* • Have knowledge of rights and responsibilities under various disability-related legislation* • Have knowledge of and access to programs, services, supports, and accommodations available for young people with disabilities* • Have an understanding of how individualized planning tools can assist youth in achieving transition goals and objectives* *Additional needs of children with disabilities. SOURCE: NCWD/Youth, 2005 PREPUBLICATION COPY: UNCORRECTED PROOFS

6-6 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES Several public and private entities have developed intervention approaches that include one or more components from the Guideposts model, providing insights on promising approaches to serve several different populations of youth with disabilities. Perhaps not surprisingly, the largest number of interventions for transition-age youth with strong evidence have focused on approaches to developing human capital, particularly in promoting employment, postsecondary education, and reduced reliance on public programs (see Box 6-1 for an example). In part, this focus represents the natural transition to adult activities. The outcomes in these interventions are also readily measurable in the data. Several other private and public interventions described below also provide supports to youth with disabilities that influence other outcomes, particularly community participation. These interventions represent important supports for youth that are especially important in understanding the full context of supports available. Sponsored by the Social Security Administration (SSA), the recently completed Youth Transition Demonstration (YTD) evaluation provides the most comprehensive information about the potential for interventions to influence outcomes of transition-age youth with disabilities based on key components of the Guideposts to Success model. At the time, the YTD evaluation was the largest effort to test innovations that had adopted the key components of the Guideposts model. The six YTD sites that participated in random assignment followed service strategies based on that model, combined with SSA waivers of certain program rules to enhance work incentives, intended to help youth with disabilities maximize their economic self-sufficiency as they transition to adulthood. Three of the six sites had positive impacts of approximately 7 percentage points on paid employment during the third year after the youth enrolled in the evaluation (Fraker et al., 2015). The largest impacts were concentrated in the sites that delivered more hours of employment-focused services to higher proportions of treatment group youth, underscoring the importance of customized, work-focused services. BOX 6-1 Marriott: Bridges from School to Work Program Bridges from School to Work is an employer-focused model that assesses the needs of each employer, both large and small, and identifies youth with disabilities as potential candidates whose abilities to do a specific job should render their disabilities irrelevant. To enroll in the Bridges program, the following criteria must be met: the candidate must be between the ages of 17 and 22, be a United States citizen or legal resident, and have documentation of a disability through an established individualized education program (IEP) or vocational rehabilitation (VR) assessment. Bridges typically begins working with eligible participants during their last year of high school or immediately upon exiting; however, the program is open to out-of-school youth aged 17–22. Under the traditional model, youth and their families participate in a 2–4 week prevocational orientation program, followed by several weeks of prevocational preparation that involves individual or group career guidance, skill-building exercises, and job search training (Luecking and Fabian, 2015). Upon completion, youth are placed in paid internship programs where they receive continuous monitoring and support from an employer representative as they develop more specific skills for future employment. At the conclusion PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-7 of the internship, employers have the option to extend an offer of employment beyond the contracted internship period. To ensure successful employment matches, applicants are thoroughly screened before a match is proposed. The main priority of the Bridges program is to ensure mutually beneficial and stable employment relationships between the employer and employee. For youth, the intended outcome is an offer of employment following successful completion of an internship with the company during the last year of high school. A second intended outcome is that youth will be able to maintain employment and advance their vocational skills toward positions that require more responsibility and/or specific skills. For employers, the intended outcome is that human resources needs will be met by matching open positions with youth who receive ongoing support to maintain their employment. Since 1990, Bridges has enrolled more than 21,000 youth in the program (BSW, 2017). In 2015, 860 of 1,081 youth served were placed in employment, earning an average hourly wage of $9.11 at hire (BSW, 2016). Of these 860 employees, 654 were retained in employment for at least 90 days, and 289 were retained in employment for at least 365 days (BSW, 2016). More than 4,200 employers in large and small companies from diverse industries have partnered with Bridges to hire individuals with disabilities. Of these employer partners, almost 40 percent have made multiple hires as a result of their satisfaction with the program (BSW, n.d.). A second major federal demonstration focusing on children receiving Supplemental Security Income (SSI), Promoting Readiness of Minors in Supplemental Security Income (PROMISE), is currently under way and will eventually provide new evidence on the effects of comprehensive transition services for SSI youth. Similar to YTD, PROMISE includes a sharp focus on providing youth with paid work experience and a rigorous random assignment evaluation design. However, PROMISE and YTD differ in terms of service providers, the focus of services, and the scale of activities. As noted by Fraker and colleagues (2014), the PROMISE programs have a stronger focus on coordination with state social service agencies, whereas the YTD projects were housed in universities and private, nonprofit service providers. Additionally, the PROMISE programs deliver services to both youth and families, whereas YTD had a more specific focus on youth. Finally, PROMISE is a larger intervention that will deliver services to more than 6,000 youth, whereas the YTD projects served a total of approximately 2,600 youth. PROMISE programs are discussed in greater detail in Box 6-2. PREPUBLICATION COPY: UNCORRECTED PROOFS

6-8 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES BOX 6-2 Promoting Readiness of Minors in Supplemental Security Income (PROMISE) The PROMISE initiative supports six state-operated model development projects (MDPs) designed to improve educational and economic outcomes for youth with disabilities. MDPs are operationalized at the state level, with the exception of the ASPIRE consortium of Western states, by lead agencies appointed by the governor. PROMISE employees are highly trained in working with youth who have disabilities. MDPs also receive support through technical assistance (TA) centers that provide resources for transition planning, informational materials, and emergency assistance to PROMISE staff. PROMISE is a joint initiative sponsored by the Departments of Education, Health and Human Services, and Labor and the Social Security Administration (SSA). In 2013, the Department of Education provided $211 million in funding to demonstration programs in five states and one consortiuma of states to launch 3-year MDPs, with an option to renew funding for 2 additional years pending successful outcomes (ED, 2013). Beyond funding these six demonstration projects, the Department of Education proposes Pay-for-Success models as lucrative funding mechanisms for helping youth with disabilities transition into the workforce, under the assumption that successful intervention programs would reduce federal spending on future disability-related Supplemental Security Income (SSI) benefits (ED, 2013). PROMISE projects are charged with improving the health, education, and economic outcomes for youth with disabilities who will soon transition out of the school system. They are also charged with improving coordination among various disability services available to youth through the Individuals with Disabilities Education Actb and Title IV of the Workforce Innovation and Opportunity Act (WIOA),c as well as Medicaid, JobCorps, and Temporary Assistance for Needy Families (TANF) services. PROMISE projects also engage the families of youth receiving SSI benefits to connect them with existing community resources and promote financial literacy. Various types of supports include advocacy training and financial education programs for families, paid employment opportunities for youth with disabilities during high school, and case management services for navigating complex benefit systems. Youth aged 14–16 who are currently receiving disability-related SSI benefits and their families are eligible to participate. To qualify, youth must be enrolled in school, be between the ages of 14 and 16, and live in a state where a PROMISE-sponsored MDP is currently in place. Mathematica Policy Research® was contracted to provide TA to PROMISE employees, including training materials for recruiting subjects (McCutcheon et al., 2014). Each PROMISE project was required to enroll at least 2,000 participants and their families over a 2-year period (McCutcheon et al., 2014). An important intended outcome of the PROMISE initiative is to make families aware existing disability services they could utilize. By coordinating disability services to improve access for child SSI recipients, the initiative pursues the long-term goal of helping individuals with disabilities and their families achieve better economic outcomes (ED, 2013). By facilitating access to coordinated disability services, PROMISE aims as well to reduce future dependence on SSI benefits. Increasing the number of youth participating in coordinated disability services is also intended to produce more comprehensive data for informing evidence-based practices nationwide. PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-9 Successful outcomes for PROMISE projects are measured in terms of positive educational and employment outcomes for youth with disabilities. Of the (at a minimum) 2,000 students per MDP, half were assigned to the experimental PROMISE group and received coordinated disability services. A second, control group of participants were assigned to a no- treatment condition, where they continued to receive disability services through traditional avenues. There is variability within each state project with regard to the type and severity of participants’ disability (or disabilities). Racial, ethnic, geographic, and socioeconomic factors may also contribute to variability in outcomes within and among state programs. While advocacy groups pushed to include youth with disabilities too severe to achieve target outcomes in the study, their inclusion status is currently unknown (CCD, 2013). Research into the efficacy of the PROMISE program is currently in the collection stage, with qualitative data including intervallic youth and family surveys, staff interviews, and focus group responses. Site visits to collect focus group and staff interview responses were completed by winter 2016, while survey participation is ongoing. Quantitative data are expected to include three extractions of state vocational rehabilitation and Medicaid records,d as well as two federal extractions of SSA and Internal Revenue Service earnings datae (Fraker et al., 2014). When demonstration project data are available, there will be a need for future research to determine if factors related to either the disability (e.g., intellectual versus physical) or particular demographic/socioeconomic characteristics promoted, or inhibited, successful posttransition outcomes (i.e., to explore the generalizability of outcomes). _____________________ aThe inaugural class of states with PROMISE-funded MDPs included Arkansas, California, Maryland, New York, and Wisconsin. Additionally, Arizona, Colorado, Montana, North Dakota, South Dakota, and Utah formed the ASPIRE consortium to receive PROMISE funding. b20 U.S.C. § 1400. cPublic Law 113-128 (29 U.S.C. § 3101, et seq.). dState record extractions began in 2014 and will resume in 2018 and 2021, respectively. eFederal record extractions are scheduled for 2018 and 2021. Several other innovative work-focused programs have also been implemented, but have not been rigorously evaluated. Project SEARCH, a private initiative that has successfully partnered with private employers, school systems, and state VR and Medicaid programs throughout the country, is notable because of its growth and the encouraging outcome data for its former enrollees, but has not benefited from an independent, rigorous evaluation (Mamun et al., 2016). Two other initiatives yet to be rigorously evaluated also involve intensive engagement with employers: Pathways to Careers, developed by Source America, and Progressive Employment, which several VR agencies are using for a range of difficult-to-serve clients, including youth on SSI (see, for instance, ExploreVR, 2017). Most recently, the Rehabilitation Services Administration (RSA) awarded grants to five state VR agencies to develop and rigorously test innovative work-based learning opportunities for high school students with disabilities. One additional initiative, CareerACCESS, led by multiple consumer advocacy organizations,3 adopts many of the elements of other initiatives, but goes further by fundamentally restructuring community support for youth under age 30 who meet SSI eligibility 3 See http://www.ourcareeraccess.org (accessed December 13, 2017). PREPUBLICATION COPY: UNCORRECTED PROOFS

6-10 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES criteria and embrace the goal of achieving economic independence via work by that age. CareerACCESS is a “community driven set of reforms” to SSI that seeks to • “establish alternative eligibility entrance requirements eliminating tests for work incapacity; • coordinate new and existing supports to serve young adults with disabilities in compliance with an Individualized Career Plan (ICP) that meets federal requirements; • adapt a ‘cash and counseling’ approach…to provide career coaching and other services; • test major simplification of paid work rules to allow project participants to have use of the federal SSI stipend … to offset expenses and the high costs of managing disability while building careers; • streamline income reporting with an annual process similar to filing taxes; • allow participants to benefit from work by eliminating all ASSE [American Society of Safety Engineers] building rules for participants; and • change the overall SSI program rules over time for all SSI young adults based on the findings and results of the pilot projects.” (WID et al., 2016, pp. 5–6) The CareerACCESS model has considerable conceptual appeal, but has never been operationalized in a community, and the support and cooperation of multiple federal and state agencies would be required to do so. Another line of research on transition support for SSI youth builds on evidence regarding the effectiveness of supported employment and supported postsecondary education for people with serious mental illnesses. The individual placement and support (IPS) model of supported employment has been shown in numerous studies to be effective in improving employment outcomes for this population, including for young adults experiencing a first episode of psychosis (Burke-Miller et al., 2012). Although results of rigorous randomized trials of supported education as a stand-alone intervention have yet to be reported, emerging evidence suggests its potential for improving both education and employment outcomes (Areberg, 2013). A toolkit for supported education (SAMHSA, 2011), preliminary work to assess its evaluability (Ringeisen et al., 2017), current efforts to identify existing supported education programs and develop a manual on career development for youth with mental health conditions, and recent findings that VR clients receiving SSI or Social Security Disability Income (SSDI) because of psychiatric disabilities achieve much better long-term employment outcomes if the VR agency provides support for postsecondary education (Honeycutt et al., 2017) all make this a promising area for further research on transition services for SSI youth. Finally, an extensive and wide-reaching examination of competitive integrated employment policy and practice was recently undertaken by the congressionally mandated Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities (ACICIEID). The ACICIEID, chartered by WIOA and composed of disability employment experts, advocates, and federal government officials, issued a comprehensive report that offers useful direction for future research and policy (ODEP, 2016). The report recommends specific approaches for youth, including expanded work experiences before high school exit, improved coordination across agencies and opportunities for braided funding, and more rigorous evaluations to document effective models of transition. PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-11 Table 6-2 presents a summary of promising transition and employment interventions, while Box 6-3 describes selected local employment programs for youth with disabilities. TABLE 6-2 Summary of Promising Interventions: Transition and Employment Project (responsible organization[s])/ Target Location Population Provider(s) Intervention Components Random Assignment Demonstrations Youth Transition SSI and SSDI Varied by state Services informed by NCWD/Youth Demonstration recipients • Community Guideposts (varied by state) (YTD) (SSA) aged 14 to 25 rehabilitation • Individualized work-based experiences • Colorado (varied by providers • Youth empowerment • Maryland state) • LEAs • Family involvement • New York (2 sites) • Postsecondary • Systems linkages • West Virginia institutions • SSA benefit waivers • Workforce centers National Job Corps Some youth • Department of Intensive work-focused, usually Study with limiting Labor (and residential supports for disadvantaged, • Contiguous 48 medical contractors) low-income youth, including a subgroup states and the conditions with medical limitations District of Columbia Promoting the SSI recipients • SEAs State-based programs that provide Readiness of Minors aged 14 to 16 • LEAs improved coordination of services, in SSI (PROMISE) and their • VR agencies including: (ED, SSA, DOL, families • Workforce • Vocational supports, case management, HHS) centers and work-based learning experiences • Arkansas • Various services and case management • California for families • Maryland • Secondary and postsecondary supports • New York • State and local collaborations among • Wisconsin providers and other agencies • Six-state consortium − Arizona − Colorado − Montana − North Dakota − South Dakota − Utah PREPUBLICATION COPY: UNCORRECTED PROOFS

6-12 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES Project (responsible organization[s])/ Target Location Population Provider(s) Intervention Components Transition Work- Secondary and Varied by locality • Minimum of two work-based learning Based Learning postsecondary • VR agencies experiences Model students with • Community • Other services and supports (varied by Demonstrations disabilities rehabilitation locality) (RSA) providers • VR agency and LEA collaboration • California • LEAs • Maine • Postsecondary • Maryland institutions • • Massachusetts • Vermont Substantial Gainful SSDI-only • VR agencies • Individualized work-based experiences Activity (SGA) beneficiaries • Community (RSA) aged 18 to 64 rehabilitation • Kentucky applying for providers • Minnesota VR services Promising Projects (nonexperimental evidence) Project SEARCH Transition-age • LEAs • Intensive, competitive, long-term • Multiple states youth and • Employers employment in integrated setting young adults, • VR agencies • Developed through collaboration that typically with • Workforce includes employers developmental centers • Goal of seamless transition from school disabilities • Medicaid to work (when begun for high school • Other agencies students) (varied by locality) Think College Youth with • Postsecondary • Dual enrollment transition model to • Colleges and intellectual institutions promote academic success through universities in disabilities • VR agencies targeted postsecondary enrollment in multiple states • Other agencies classes and accommodations might be • Involves collaborations between involved postsecondary institutions and other agencies PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-13 Project (responsible organization[s])/ Target Location Population Provider(s) Intervention Components CareerACCESS Young adults • Medicaid • Person-centric approach to career • None (proposed aged 18 to 30 • Private providers coaching and other employment, five-state initiative) who initially education, and training services meet the SSI • Cash stipend equivalent to maximum income, asset, SSI benefit—to compensate for the cost and medical of managing his or her disability while criteria building a career—that is not reduced by earnings except at high level Pathways to Careers Adults ages • Community Individualized employment strategies, (SourceAmerica) 18 and over rehabilitation emphasizing informed choice and • Multiple states with providers integrated and competitive employment, diagnoses of including: autism or • Paid work experiences intellectual or • Customized job development developmental • Employer incentives disabilities Pre-employment Secondary • VR agencies WIOA requirement that VR agencies transition services education • LEAs spend at least 15 percent of their annual • All states students with • Community federal allotment to provide five services disabilities rehabilitation to secondary education students: providers • Job exploration counseling • Work-based learned experiences • Transition or postsecondary education counseling • Workplace readiness training • Self-advocacy instruction NOTE: DOL = U.S. Department of Labor; ED = U.S. Department of Education; HHS = U.S. Department of Health and Human Services; LEA = local education agency; NCWD/Youth = National Collaborative on Workforce and Disability for Youth; RSA = Rehabilitation Services Administration; SEA = state education agency; SSA = Social Security Administration; SSDI = Social Security Disability Income; SSI = Supplemental Security Income; VR = vocational rehabilitation; WIOA = Workforce Innovation and Opportunity Act. PREPUBLICATION COPY: UNCORRECTED PROOFS

6-14 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES BOX 6-3 Selected Local Employment Programs for Youth with Disabilities Partners for Youth with Disabilities’ Young Entrepreneurs Project (Boston) is a school-based career-readiness program in Boston that addresses barriers to employment for youth with disabilities. The three-tiered program emphasizes academic learning that focuses on financial literacy, business strategies, and preparation for career readiness. Youth participants are also invited to interact with guest speakers, participate in job shadowing and mock interviewing, and receive mentoring on how to start businesses in the community. Annually, PYD serves more than 85 students in both classroom and after-school settings, such as Boys and Girls Clubs. Program sites are adopted by local businesses, which provide financial and human capital support to help youth with disabilities achieve competitive employment (PYD, 2017). Successful Transition Education Program (STEP Ahead) (City of Hialeah) is a year- round program that partners with Miami-Dade County public schools to offer a wide range of enrichment activities designed to enhance and integrate the academic, life, social, and work skills of youth aged 14–22 with mild to moderate intellectual disabilities, as well as youth on the autism spectrum. Program staff consist of Miami-Dade County public school certified teachers, experienced career counselors, and professionals in charge of work teams (City of Hialeah, Florida, 2017). STEP Ahead’s primary goal is to prepare participants for a successful transition from high school to the adult world. To prepare for life after high school, program participants receive internship opportunities at various county sites during the school year. During the summer, qualified participants receive a stipend for their internship work. STEP Ahead is funded through the Children’s Trust, a Miami-Dade County property tax initiative that must be renewed every 5 years, and offers free transportation services to participants. In summary, the evidence to date underscores the promise of intensive interventions targeted at specific populations to show positive impacts. The interventions demonstrating the most promising effects have tended to provide customized supports to more narrowly targeted subgroups, particularly younger persons and those with psychiatric impairments. The findings also underscore the importance of having clear objectives for service delivery that are focused on a youth’s outcomes (e.g., employment services for employment outcomes). INDEPENDENT AND INTEGRATED COMMUNITY LIVING PROGRAMS In 1999, the U.S. Supreme Court ruled that Title II of the Americans with Disabilities Act (ADA) prohibits segregating individuals with disabilities from participation in community living to the fullest extent possible.4 Institutional placements were determined to diminish the quality of everyday life activities. Furthermore, the Supreme Court deemed that institutionalization perpetuated negative stereotypes regarding individuals with disabilities’ worthiness to participate in community living (DOJ, n.d.). In the years following this decision, the federal government has created or expanded several programs to help individuals with disabilities transition to and maintain a lifestyle that involves independent and integrated community living. 4 Olmstead v. L.C., 527 U.S. 581 (1999). PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-15 There are a variety of federal programs working to increase community integration and independent living opportunities for individuals with disabilities after high school. These programs provide tools, resources, and supports for integrating people with disabilities fully into their communities to promote equal opportunities, self-determination, and respect. The Department of Health and Human Services’ Administration for Community Living (ACL) was created to promote the principle that individuals with disabilities should be able to live where they want, with whom they want, and participate in their communities as desired. ACL administers both disability research and direct service programs that promote these stated goals.5 ACL also manages the Individual Living Formula Grant program,6 which gives funding to states for providing, expanding, and improving the provision of independent living services. Direct forms of service sponsored by formula grants include the creation of new independent living services in underserved areas of a state, the provision of independent living skills training, peer counseling, and individual or systems advocacy (ACL, 2017a). To encourage community investment in integrating individuals with disabilities into the community, discretionary grants are available for consumer-controlled, community-based, cross- disability, nonresidential, private nonprofit agencies that provide independent living services. These Centers for Independent Living (CILs) are charged with providing four categories of “core services” to individuals: advocacy services, information and referral services, independent living skills, and peer mentorship. Individual-level advocacy services involve formal and informal training to help people with disabilities become assertive self-advocates and promote personal empowerment. Systems-level advocacy services include partnering with community stakeholders to ensure compliance with disability legislation (e.g., ADA) and to effect positive attitudinal and environmental change in the community. Information and referral services aim to connect individuals with disabilities with services offered outside the CIL, thereby connecting the individual to a larger web of services while promoting interagency communication and cooperation. Independent living skills include training on basic tasks that lead to functional independence, such as budgeting, resumé writing, employment assistance, and individualized supports. Finally, peer mentorship is provided as a valuable means of emotional support that gives individuals in CILs an opportunity to work with others to devise creative solutions for issues with everyday living (ACL, 2017a). In addition, CILs may provide such direct services as physical therapy, psychological counseling, mobility training, transportation, and housing or employment assistance (ACL, 2017a). All services must be available to individuals with significant disabilities regardless of age, income, or disability7 type. WIOA added a new category—transition services—to the list of “core services” to be offered by government-funded CILs. To qualify for these services, youth 5 In 2014, WIOA transferred to ACL Independent Living programs; the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR); and the Assistive Technology programs. 6 The Independent Living Formula Grant Program is authorized Under Title VII, Chapter I, Part B of the Rehabilitation Act, as amended by the Workforce Innovation and Opportunity Act (WIOA) of 2014. 7 ACL adopted the WIOA (2014) definition of disability: WIOA defines “youth with a disability” to mean “an individual with a disability who is not younger than 14 years of age; and is not older than 24 years of age.” See https://www.acl.gov/sites/default/files/news%202017-05/ACL_ILA_Youth_Services_FAQ0417.pdf (accessed April 9, 2018). PREPUBLICATION COPY: UNCORRECTED PROOFS

6-16 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES must be deemed eligible for an IEP—however, they do not have to have a current IEP in place because CIL services are also available to out-of-school youth8 and young adults. Various federal and state funding sources support state-level assessment of the most pressing needs for individuals with disabilities, as well as policy discussions. To receive funding for CILs and independent living programs previously discussed, states must form independent Statewide Independent Living Councils that evaluate the state’s 3-year plan for providing and improving independent living services (ACL, 2017b). Other policy organizations include State Councils on Developmental Disability (Councils), a collection of federally funded, self- governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory (ACL, 2017b). Currently, there are 56 councils across the United States and its territories. Council members are appointed by the state’s governor and at least 60 percent of them must be individuals with developmental disabilities or their family members. Council activities include conducting outreach and listening sessions, identifying policy barriers, developing coalitions, encouraging citizen participation, and keeping policy makers informed about disability issues. Common activities across Councils involve • promoting activities that teach self-advocacy skills, with the long-term goal of enhancing self-determination; • educating communities to welcome people with developmental disabilities; • designing 5-year state plans that address new ways of improving service delivery to people with developmental disabilities; and • seeking information from the public (ACL, 2017b). Councils also train individuals with and without disabilities to become community advocates. According to fiscal year (FY) 2014 performance measures, 2,540 individuals received training related to their personal goals/objectives, and 11,406 received training related to leadership, self-advocacy, or self-determination. At the systems level, 9,379 received training in systems advocacy, while 46,066 reported training in other measures of self-advocacy (ACL, 2017b). With respect to housing programs, according to the Department of Housing and Urban Development’s (HUD’s) 2015 report on worst-case housing needs, there are approximately 7.7 million very low-income individuals who spend more than half of their income to live in inadequate housing. Among this population, one in seven (approximately 1.1 million people) is a nonelderly individual with a disability (Steffen et al., 2015). In 2014, approximately 4.9 million noninstitutionalized adult SSI recipients had incomes averaging less than $9,000 per year—low enough to be priced out of every rental housing market in the nation (TAC, n.d.). In addition, more than 850,000 people with intellectual or developmental disabilities live with a caregiver over 60 years old. As this generation of caregivers continues to age, many of their adult children with intellectual or developmental disabilities may be at risk of institutionalization or homelessness as a result of the shortage of affordable housing and support services (The Arc, 2016). 8 In other words, to qualify for out-of-school youth services, only youth “who were eligible for individualized education programs under section 614(d) of the Individuals with Disabilities Education Act (20 U.S.C. 1414(d)), and who have completed their secondary education or otherwise left school may be eligible to receive these services. PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-17 Lack of appropriate, affordable housing has been identified as a key factor in preventing the transition of an estimated 137,000 nonelderly individuals with disabilities from nursing homes to community living utilizing the federal Money Follows the Person Rebalancing Demonstration Grant program, or MFP (HUD, 2017). The MFP program is intended to help states balance their Medicaid long-term care costs by expanding and increasing access to Home and Community-Based Services (HCBS). The Patient Protection and Affordable Care Act expanded the MFP program to allow more states to apply. Currently, 43 states and the District of Columbia participate in the program. As of December 2016, more than 75,151 people with chronic conditions and disabilities had transitioned from institutions back into the community through MFP programs. However, many other eligible individuals are constrained from leaving residential care by the lack of affordable housing that is designed to accommodate their disability-related needs (CMS, n.d.). Federal programs also exist to help low-income individuals with disabilities afford rent in integrated community settings. These programs have existed in some form since the 1970s; however, only over the last decade have efforts been renewed to expand the scope of affordable housing programs. The Section 811 Supportive Housing for Persons with Disabilities9 is a federal program administered by HUD that helps the lowest-income people with the most significant and long-term disabilities live independently in the community by providing affordable housing linked with voluntary services and supports. A key goal of Section 811 is “to enable persons with disabilities to live with dignity and independence within their communities by expanding the supply of supportive housing that: • Is designed to accommodate the special needs of such persons; • Makes available supportive services that address the individual health, mental health and other needs of such persons; and • Promotes and facilitates community integration for people with significant and long- term disabilities.” (42 U.S.C. 8013) Section 811’s Project Rental Assistance (PRA) program created new integrated supportive housing units for extremely low-income people with disabilities. To qualify for a PRA housing unit, a household must be comprised of one or more persons with a disability who is at least 18 years of age and less than 62 years of age, is extremely low-income, and can benefit from the supportive services offered in connection with the housing (DOJ, n.d.). The PRA program provides housing affordability by ensuring that tenants pay no more than 30 percent of their adjusted monthly income for rent.10 The program emphasizes community integration in that agencies receiving PRA funding may reserve no more than 25 percent of units for individuals with disabilities (Shaak and Sloane, 2014). This guideline is designed to provide people with disabilities the opportunity to live in affordable rental properties alongside people who do not have disabilities. Since the 1990s, the Section 811 program has resulted in the creation of more than 30,000 supportive housing units, primarily through the development of group homes and independent living projects (Shaak and Sloane, 2014). The McKinney Homeless Assistance Act authorized HUD to make grants to state or local governments, nonprofit organizations, and community mental health associations to promote the 9 The Section 811 legislation was reformed in 2010 when it was signed by President Obama as the Frank Melville Supportive Housing Act of 2010 (Public Law 111-374). 10 The FY 2018 HUD budget request suggests raising individual contributions to 35 percent of gross income. PREPUBLICATION COPY: UNCORRECTED PROOFS

6-18 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES development of supportive housing services, including innovative approaches to assist homeless people in the transition from homelessness to living independently (ILAO, 2018). Grants are available for both transitional and permanent housing for individuals with disabilities. To maintain a smaller, community-based presence, residences are typically permitted to house no more than 8 individuals with disabilities per residence, although some are granted exceptions to house up to 16 (ILAO, 2018). Federally funded projects must provide residential supervision to ensure that adequate supportive services are given to the residents (ILAO, 2018). Support services may include such offerings as outpatient health services, meal assistance, case management services, housing and employment referral services, and legal assistance (ILAO, 2018). To qualify for these types of housing, individuals must be homeless and considered to have a disability. Under this legislation, disability consists of the following criteria: • is expected to be of indefinite duration; • significantly disrupts one’s ability to live independently; and • requires suitable housing conditions that minimize the negative effects of the disability. Individuals with disabilities who qualify are allowed to live in these group residences, both transitional and permanent, with their families. As with PRA-funded units, the cost of rent cannot exceed 30 percent of the family’s monthly adjusted income (ILAO, 2018). The Housing Trust Fund (HTF), operated by the HUD exchange, is another funding mechanism for assisting low-income families in securing safe, integrated housing.11 HTF funds may be used to construct, acquire, or renovate affordable, nonluxury housing with suitable amenities (HUD, 2018). In certain cases, HTF funds may contribute to the construction or renovation of group homes. Group homes are one strategy for relieving aging caregivers of overwhelming daily responsibilities without institutionalizing people with disabilities. Additionally, HTF offers single-family programs to help individuals with disabilities achieve accessible community living. The Amy Young Barrier Removal Program provides one-time grants of up to $20,000 for low-income individuals, or landlords who rent to low-income individuals, to make homes more accessible to individuals with disabilities (TDHCA, n.d.). Various states have also created Special Needs Housing Trust Funds to assist citizens in improving the accessibility of the home for individuals with disabilities. For example, New Jersey created a Special Needs Housing Trust Fund in 2005 by issuing $200 million in bonds to create housing for people with special needs and the homeless. Special Needs Housing Trust Fund grants may be used either for single-home improvements or to construct supportive group housing for people with special needs (HCDNJJ, 2012). New Jersey also allocates funding for individuals with disabilities aged 18–21 who have aged out of foster care, while others provide longer-term housing stability. ADVOCACY SERVICES AND PROGRAMS As discussed throughout this report and in greater detail in Chapter 7, children and youth with disabilities and their families often have difficulties accessing needed programs and services. To assist children and their families, a number of federal, state, and nonprofit groups 11 HTF was established under Title I of the Housing and Economic Recovery Act of 2008, Section 1131. PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-19 advocate for the rights of individuals with disabilities. Such programs provide legal supports to help children and families access services and advocate for legislative initiatives to improve outcomes for children with disabilities and their families. State Protection and Advocacy Systems (P&As) created under the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act), as well as the Technology- related Assistance Act for Individuals with Disabilities (Tech Act) and the Assistive Technology Act of 1998 (as amended), protect and empower individuals with disabilities through a combination of advocacy work and policy monitoring to ensure that legislative protections for people with disabilities are properly implemented. There are currently 57 P&As among U.S. states and territories. P&As provide legal support to traditionally unserved or underserved populations to help them navigate the legal system to protect their individual and civil rights. These organizations are committed to implementation of the Olmstead v. L.C. (1999) decision requiring states to eliminate unnecessary segregation of individuals with disabilities and to provide disability services in the most integrated environment possible. Relevant P&A programs include the Protection and Advocacy for Individuals with Developmental Disabilities program (PADD) and the Protection and Advocacy for Assistive Technology program (PAAT). Under 42 U.S.C. 15043, PADD programs have authority to investigate abuse and neglect of people with disabilities and are charged with safeguarding their rights to live with dignity and self-determination. PAAT programs, on the other hand, are charged with assisting individuals with disabilities and their family members, guardians, advocates, and authorized representatives in accessing technology devices and assistive technology services through case management, legal representation, and self-advocacy training. Assistive technology (AT) is defined as any device or service designed to increase, maintain, or improve the functional capabilities of individuals with disabilities. In general, PAATs provide information and referrals for obtaining AT devices, as well as administrative and legal advocacy for obtaining AT devices when necessary (ACL, 2017c). Federal efforts are assisted by national nonprofit groups that advocate for policies that improve outcomes in independent living and community integration for individuals with disabilities. The National Council on Independent Living (NCIL) is one such example. NCIL is a cross-disability, grassroots organization run by and for people with disabilities that represents CILs, Statewide Independent Living Councils, individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States (NCIL, 2018). There are a variety of established nonprofit organizations that advocate for the rights of children with disabilities to bridge access to services and programs discussed throughout this report, as well as other necessary supports that help them live fulfilling lives in their communities. For example, one of the foremost advocacy organizations focusing on improving outcomes for the whole person is The Arc of the United States (The Arc).12 The Arc consortium is the nation’s largest provider of advocacy services and a variety of supports for people with intellectual and developmental disabilities in the United States, with more than 140,000 members affiliated through more than 850 state and local chapters across the nation (Do, 2011). The Arc is devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities. One way The Arc improves outcomes is by advocating for the programs and services that are critical for building positive outcomes for children with 12 Formerly the Association for Retarded Citizens (ARC), its name was officially changed to The Arc of the United States in 1992. PREPUBLICATION COPY: UNCORRECTED PROOFS

6-20 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES disabilities. The Arc invites individuals with disabilities to share their SSI, HCBS waiver, or paid leave story in order to emphasize how important these programs are for people with disabilities. The Arc also maintains a blog on state advocacy opportunities and offers disability policy seminars to help all types of advocates come together and share ideas. The Council of Parent Attorneys and Advocates, Inc. (COPAA) is one of the primary national organizations petitioning Congress and the courts to protect the rights of children with disabilities to access services they require to pursue high-quality education. COPAA is comprised of approximately 1,800 members including attorneys, advocates, parents, and disability-service professionals who offer reciprocal support, connections, and advice to members on a variety of topics related to educating students with disabilities from kindergarten through postsecondary education. The vast majority of COPAA members have at least one family member who has a disability (COPAA, 2017). COPAA’s mission emphasizes protecting the legal and civil rights of students with disabilities and their families, and providing assistance toward helping students with disabilities reach their educational potential. The organization does not provide direct health or social support services to individuals with disabilities, nor does COPAA limit its advocacy efforts to any type of disability or specific age range. Members are engaged in the cause of protecting and strengthening disability-related legislation, influencing public policy, and petitioning the courts on disability issues. COPAA frequently provides training for special education advocates on all aspects of special education policies and students’ rights, and provides professional development training to attorney groups on such matters as due process in the education system and informal mediation procedures. At present, COPAA’s policy priorities are focused on three intended outcomes: (1) each child must have quality individualized services and supports to which he or she is entitled under the law; (2) robust and systemic enforcement of disability-rights laws should be implemented to increase compliance and reduce the need for individual enforcement; and (3) due process rights are essential to protect the educational and civil rights of children with disabilities, and trained legal council should be affordable and accessible to students with disabilities and their families (COPAA, 2014, p. 6). COPAA influences federal and state policy through congressional petitions and raises awareness on issues that the organization believe require new regulations, such as the use of restraints, seclusion, or aversive interventions in schools. For instance, COPAA leadership may grant requests to contribute to amicus curiae briefs “of national significance” for cases that present issues affecting the educational welfare of students with disabilities (COPAA, 2017). In 2017, members of COPAA wrote an open letter to members of Congress expressing concern that Medicaid cuts included in the proposed American Health Care Act of 2017 would negatively impact students with disabilities, as Medicaid allows schools to be reimbursed for direct health care services received by students who have a qualifying disability. Similar efforts are currently being undertaken by the National Alliance on Mental Illness (NAMI), which recruits volunteer advocates to garner support for bipartisan efforts to maintain mental health coverage in any future health care reform bill. COPAA attorneys have also filed amicus curiae briefs with the Supreme Court in Schaffer v. Weast (2005), where COPAA argued that school districts should bear the burden of proof in the Individuals with Disabilities Education Act (IDEA)-determination cases because they have greater financial resources, and in Board of Education of New York v. Tom F. (2007), where COPAA argued that amendments to IDEA (1997) permitted parents to seek private school tuition reimbursement from a local school board on the basis that it failed to provide a free and PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-21 appropriate public education (FAPE), even if the child was never enrolled in a public school to oversee the IEP (see Appendix B). In 2016, COPAA also published the report School Vouchers and Students with Disabilities: Examining Impact in the Name of Choice, which highlights the difficulties faced by parents who choose special education vouchers over neighborhood public schools (Almazan and Marshall, 2016). Recent estimates suggest that 50 million Americans need legal assistance to be healthy (HCSA, 2014). To serve this need, medical–legal partnerships (MLPs) integrate attorneys and paralegals into health care to work alongside doctors and health care teams, offering legal assistance to people in need of insurance, public benefits, housing, education, employment, legal status, and immediate safety. Their charge is to improve the health and well-being of people and communities by leading the health, public health, and legal sectors in an integrated approach to combat health-harming social conditions. Examples of unmet, health-harming needs include children living in unsafe housing or veterans who are unable to access necessary medical equipment and services (Beeson et al., 2013). MLPs currently operate in 294 health care institutions, including 45 children’s hospitals, 77 Health Resources and Services Administration (HRSA)-funded health centers, and an increasing number of institutions that serve veterans and the elderly (NCMLP, 2018). In 2016, MLPs helped more than 75,000 patients resolve legal issues that were impeding their health and health care. MLPs also trained nearly 15,000 health care providers to better understand and screen patients for social determinants of health and how to respond to health-harming social conditions (NCMLP, 2018). MLPs are funded through federal, state, and local health funding and appropriations (e.g., Section 330 of the Public Health Services Act, chronic disease management programs, innovation and prevention funds), as well as academic institutions,13 public interest legal fellowships, and private/corporate sponsorships. MLP services are housed onsite at large health care service providers such as hospitals. When medical professionals identify patients who are experiencing civil legal issues—“the social, financial, or environmental problems that require assistance from lawyers to remedy” (Martin et al., 2015)—that negatively impact their health (such as skipping medications because of lack of income), they may refer the patient to the MLP division for help in resolving outstanding legal issues. By helping low-income people resolve their legal needs, MLPs aim to reduce the cost of caring for the highest-need, highest-cost patients (NCMLP, 2016). The community is also intended to benefit by experiencing better population health, as well as financial savings. Evidence from quasi-longitudinal studies indicates that families who receive benefits through MLPs are less likely to delay or avoid taking prescribed medicines or to delay seeking medical services because of lack of insurance or perceived financial costs (Weintraub et al., 2010). A study by Lancaster General Health found that 95 percent of its highest-need, highest-cost patients had two to three unmet civil legal needs, on average. When these civil legal needs were met, their health care costs were reduced by 45 percent (Martin et al., 2015). An example of an MLP is provided in Box 6-4. 13 The National Center for Medical-Legal Partnership is housed in the Milken Institute School of Public Health at The George Washington University. PREPUBLICATION COPY: UNCORRECTED PROOFS

6-22 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES BOX 6-4 Project HEAL In 2005, Equal Justice Works in Washington, DC, provided initial funding for a 2-year postgraduate legal fellowship between Kennedy Krieger Institute and a nonprofit legal services organization to create Project HEAL, modeled after the first medical–legal partnership (MLP) founded at Boston Medical Center in 1993. To date, Project HEAL is Maryland’s only comprehensive MLP. A community-based program of the Maryland Center for Developmental Disabilities at Kennedy Krieger Institute, which is Maryland’s University Center for Excellence in Developmental Disabilities, Project HEAL provides comprehensive advocacy and legal services for children with intellectual and developmental disabilities and their families. Twenty-five percent of Project HEAL clients have been diagnosed with attention-deficit hyperactivity disorder (ADHD), and nearly 25 percent have an autism spectrum disorder (HCSA, 2014). Project HEAL attorneys collaborate with Kennedy Krieger faculty, staff, and trainees to ensure that patients receive the medical and legal care they need. Project HEAL attorneys provide representation in special education disputes, Supplemental Security Income (SSI) appeals, and simple family law matters; limited representation to patients and families (e.g., brief advice, document review, referrals, information, and resources); case consultations to Kennedy Krieger faculty, staff, and trainees (e.g., brief advice, document review, referrals, information, and resources); pro bono referrals to law firm partners; professional trainings at local, state, national, and international conferences; and community trainings for children, families, service providers, and outside agencies. In 2010, the Baltimore-based law firm of Ober|Kaler partnered with Project HEAL to provide pro bono legal services to Kennedy Krieger families and children with disabilities on a variety of legal issues. Ober|Kaler offers pro bono support for patients who have complex case. Approximately 93 percent of Project HEAL cases involve special education matters (HCSA, 2014). Project HEAL faculty, staff, and trainees engage in ongoing research and evaluation of advocacy and legal issues that affect individuals with disabilities across the life span, as well as participate in local, state, and national coalitions, task forces, and organizations that work to advance the rights of individuals with disabilities. A third area in which many youth with disabilities desperately need advocates is interacting with the juvenile justice system. In some areas, the proportion of youth in juvenile custody who have a mental or behavioral disability is estimated to exceed 70 percent (Morris and Thompson, 2008). The Arc’s National Center on Criminal Justice and Disability (NCCJD) highlights the plight of children with intellectual and developmental disabilities who are caught up in the juvenile justice system. Specifically, NCCJD calls for collaboration among professions associated with juvenile justice to ensure that all children get the disability services they require, especially as they relate to education. In a 2014 Dear Colleague letter, the U.S. Department of Education provides guidance on the rights and responsibilities associated with ensuring FAPE for children with disabilities in correctional facilities, as guaranteed by IDEA (Musgrove and Yudin, 2014). Recognizing that “absent a specific exception, all IDEA protections apply to students with disabilities in correctional facilities and their parents,” Musgrove and Yudin (2014) outline the responsibilities of states, state education agencies, and other public agencies (e.g., local education agencies, correctional facilities that operate as local education agencies, PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-23 noneducational public agencies) in ensuring FAPE. These include general oversight; accountability, data collection, and reporting; personnel qualifications; child find and evaluation; IEPs; and due process and discipline. However, as highlighted in Chapter 2, children with disabilities who interact with juvenile or adult justice systems are at increased risk for adverse education outcomes, and research in this area indicates that many children with disabilities in correctional settings are not receiving the services to which they are entitled (Leone, 1994; Leone and Cutting, 2004). For example, the Survey of Youth in Residential Placement found that “less than one-half (46%) of youth with a diagnosed learning disability say they have received special education program while in the facility, although this is significantly higher than the percentage of youth without a diagnosed learning problem who say they received a special education program (12%), presumably to address their other special needs” (Sedlack and McPherson, 2010, p. 29). A pilot project putting these ideas into practice is the Long Island Advocacy Center, discussed in Box 6-5. National peer support organizations also offer youth and young adults the opportunity to develop self-advocacy skills. Youth Motivating Others through Voices of Experience (or Youth M.O.V.E.) was founded as statewide, youth-led organizations determined to help young adults aged 14–25 transition successfully into adulthood. Through national conventions, such as Dare to Dream America, youth with disabilities come together to learn from one another and develop leadership skills such as self-determination and self-advocacy, which studies have shown predict successful independent living outcomes in the future (Shogren and Shaw, 2016; YMN, 2018). Youth who feel drawn toward disability advocacy are encouraged to self-nominate for a role in the National Youth Leadership Network, which operates a platform for youth with disabilities to tell their stories, weigh in on disability legislation, and inspire peers to join in advocacy efforts. BOX 6-5 Long Island Advocacy Center The Long Island Advocacy Center (LIAC) is a private nonprofit organization dedicated to ending unequal access to a free and appropriate public education (FAPE) as evidenced by the overrepresentation of youth with emotional, learning, and/or behavioral disabilities in the juvenile justice system compared with the general population (Enteen, 2009). LIAC is a 2-year joint program with the Suffolk County, New York, Probation Department that works to improve the educational outcomes of youth whose poor performance in school is attributed to an unidentified need for special education services. LIAC advocates obtain a professional disability evaluation for their clients and secure necessary services to help the youth meet their educational potential. LIAC advocates occasionally attend school district committee meanings that involve discipline issues for students who have special education plans if the students’ misconduct could be related to their disabilities. In such cases, LIAC advocates have successfully helped youth with disabilities avoid being remanded for probation violations or serving long suspensions for disability-related misbehaviors (Enteen, 2009). At the midpoint of the LIAC–Suffolk County Probation Department joint program, there had been 66 fewer youth remanded into custody than average for that time, which constitutes an 11 percent reduction in cases resulting in juvenile detention sentences. LIAC provides an education attorney to be present in Family Court for that jurisdiction each day to report to the judge on individual youth’s education progress and work with the youth’s family, initiate appeals, and file motions to change schools PREPUBLICATION COPY: UNCORRECTED PROOFS

6-24 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES or other conditions that negatively impact the youth’s legal right to FAPE. While not the only education advocacy program for youth in the juvenile justice system, the LIAC model is unique in that advocates participate as full members of a youth’s case management team alongside social workers, physical and mental health care providers, and probation officers (Enteen, 2009). ECONOMIC SUPPORT PROGRAMS As discussed in Chapter 2, childhood socioeconomic status, health, and disability are intertwined. Childhood disability is associated with a greater likelihood of more health care expenditures and of loss of parental income due to unemployment, underemployment, and opportunity costs (e.g., parents not being in a position to take on more challenging work responsibilities or to return to school). As a population, children with disabilities have four times higher medical costs than their peers without disabilities, and their families experience markedly higher out-of-pocket expenses (Holzer et al., 2008; Newacheck et al., 2000; Stabile and Allin, 2012). As a result of the direct and indirect effects of the child’s disability, families are more likely to experience poverty and have fewer resources with which to close the gap between the child’s abilities and the social, health, and educational resources that may help minimize the disability. As discussed throughout Chapters 4 and 5, there are many services and programs across a variety of domains aimed at improving health and functioning outcomes for children with disabilities. However, children living in poverty often have more difficulty accessing such services and programs because of a number of factors, including family finances. Because of the bidirectional relationship between childhood disability and family socioeconomic status, the provision of additional cash supports to low-income families of children with disabilities is vital to these families. The two largest sources of income support for low-income families are Temporary Assistance for Needy Families (TANF) and SSI. The TANF program provides cash benefits and various services to low-income households, some of which may have a child with a disability or health condition. The child SSI program provides benefits to children in low-income households who meet certain disability, income, and resource criteria. As of 2016, there were 1,213,079 children receiving SSI benefits (SSA, 2017). The maximum SSI benefit is relatively larger than TANF, which makes SSI a potentially attractive alternative for low-income families with children with disabilities. In 2014, the maximum SSI benefit was $721 per month, and all but four states supplemented federal SSI benefits with an additional state benefit, averaging $48 per month (for the states where data are available), for certain SSI recipients (ASPE, 2015). Wiseman (2011) concluded that the national average monthly TANF benefit for an entire household was approximately $200 lower than the average SSI individual benefit (ASPE, 2015). The average federally administered SSI payment to child recipients in 2015 was $643 (SSA, 2017). However, a key feature that may limit access to SSI is its stringent disability and eligibility criteria. To qualify, individuals under age 18 applying for SSI because of a disability must meet disability, income, asset, and other criteria to qualify for benefits. The child disability criteria include having “a medically determinable physical or mental impairment which results in PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-25 marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”14 In addition to accounting for the child’s own income and assets, eligibility and payment calculations account for parental income and assets, which are “deemed” to the child (that is, treated as the child’s own). Youth can receive benefits as long as they meet these eligibility requirements, which SSA will periodically assess in continuing disability reviews (CDRs) and nonmedical redeterminations. The youth who qualify for SSI have diverse demographic, family, and health characteristics that indicate a need for supports, and these needs are far from homogeneous. Based on administrative data, most child SSI recipients are under the age of 10, are male, and have a mental impairment (SSA, 2017). Additionally, based on survey data from a 2000 cohort of SSI recipients, 71 percent lived in single-parent families, and almost half of all recipient families included another family member with a disability.15 Finally, Rupp and Ressler (2009) document that the family caregiving needs vary substantially among child SSI recipients. One feature of the child SSI program that has generated policy interest is the requirement to conduct redeterminations at age 18, which was implemented as part of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996.16 SSA uses the same medical, income, and resource standards to make age-18 redeterminations and adult SSI application decisions. Since no specific goal is delineated, it is difficult to assess whether the program is meeting its goal. Presumably the program is intended to help with the financial burden of raising a child with a disability, which is a hardship regardless of income, but is particularly difficult for those in poverty. One estimate indicates that expansions of the child SSI program in the 1990s reduced the probability that a child lived in poverty by 11 percentage points. By 2006, researchers estimate that there were 160,000 fewer children in poverty than there would have been absent the large expansions of the child SSI program in the early 1990s (Duggan and Kearney, 2007). Another key indicator of the program’s effect on poverty is that the child’s SSI benefit check represents approximately half the income for the family (Davies et al., 2009). Deshpande (2016) finds that child SSI outcomes are limited through young adulthood for those who are on and off SSI after age 18, although those who are removed from SSI at age 18 face substantial income volatility. There are also concerns about the potential for SSI benefits to serve as a disincentive for adolescents to become economically self-sufficient, although it is unclear what proportion of adolescents with severe disabilities would be able to do so. In part because, as noted above, the benefit check is so important for the family’s income, families are potentially fearful of what might happen to their total income if their child were to leave benefits. This creates potential challenges for families trying to prepare their child to transition into adult life, especially with respect to whether to encourage their child to pursue work activity. Current program rules for SSI require children to report earnings from work, which may discourage work activity. At present, relatively few child SSI recipients report earnings (2,229 recipients had countable earnings in 2013 [SSA, 2014, p. 25]), and there is evidence that youth with disabilities may not fully understand existing work incentives or opportunities to maintain their SSI benefits while seeking job opportunities upon reaching majority (Hernandez et al., 2006). For example, 14 42 U.S.C. § 1382c(c)(i). 15 Wittenburg, D., Testimony before the House of Representatives’ Subcommittee on Human Resources, Washington, DC, October 27, 2011. 16 Public Law 104-193. PREPUBLICATION COPY: UNCORRECTED PROOFS

6-26 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES Ticket to Work is a free program for individuals aged 18–64 with disabilities who are currently receiving SSI benefits. It offers SSI beneficiaries with disabilities a pathway for securing stable employment through job placement assistance provided by Ticket to Work employment service providers (CMS, 2017). Services offered through employment networks or state VR agencies include training for a new employment sector, career counseling, VR, job placement, and ongoing support services (CMS, 2017). Nevertheless, evidence suggests that fewer than one- fourth of child SSI recipients (22 percent) had heard of SSI work incentives or discussed them with an SSI representative (Loprest and Wittenburg, 2005). The challenges of securing satisfactory, competitive future employment while maintaining SSI benefits to meet basic costs of living are particularly complicated for transition-age youth because their activities and health status could influence the probability of their remaining eligible for benefits after the age 18 redetermination. A potential short-term solution to this problem was encoded in Section 301 of the Social Security Act. Section 301 states that youth who are reevaluated for SSI benefits under the adult criteria and deemed ineligible to continue receiving benefits may continue receiving SSI benefits, known as Section 301 payments, at current levels past age 18 if enrolled in school or a qualifying VR program (SSA, 2017). Section 301 payments end when beneficiaries either complete or withdraw from school or their VR program, or SSA determines that participating in the program is unlikely to increase their chances of not returning to the disability rolls (SSA, 2017). Simplification of rules (e.g., waivers or not requiring youth to report earnings) and greater awareness of exceptions such as Section 301 could represent important options for future testing to ameliorate fears of returning to work. Regulated by the Internal Revenue Service (IRS), the Stephen Beck Jr. Achieving a Better Life Experience Act of 2014 (ABLE Act)17 amends Section 529 of the IRS Code of 1986 to allow for the creation of tax-exempt ABLE accounts.18 These tax-exempt accounts assist eligible individuals and their families in saving funds for disability-related expenses of beneficiaries with disabilities and allow them to supplement benefits paid through private insurance (Medicaid, SSI, the beneficiary’s employment, and other sources). Individuals with a significant disability with an onset prior to the individual’s 26th birthday are eligible beneficiaries of ABLE accounts. Unlike other public benefits that are low-income dependent (such as SSI, the Supplemental Nutrition Assistance Program [SNAP], and Medicaid), ABLE accounts are available to eligible individuals with disabilities and their families regardless of family income and assets. ABLE accounts are “maintained by a state, or by an agency or instrumentality of the state, to pay the qualified disability expenses related to the blindness or disability of a program beneficiary, including expenses for education, housing, transportation, employment training and support, assistive technology and personal support services, health, prevention and wellness, financial management and administrative services, legal fees, and expenses for oversight and monitoring, funeral and burial expenses.”19 Participating individuals, including family and friends, may contribute up to a total of $14,000 per tax year to an 17 H.R.647–133th Cong. (2013–2014), see https://www.congress.gov/bill/113th-congress/house-bill/647 (accessed April 9, 2018). 18 See http://ablenrc.org/about/history-able-act (accessed April 9, 2018). 19 See http://ablenrc.org/about/what-are-able-accounts (accessed April 9, 2018). PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-27 individual’s ABLE account.20 ABLE accounts allow qualified individuals with disabilities to save up to $100,000 without affecting their eligibility for SSI, Medicaid, and other public benefits.21 The ABLE Act allows states, but does not require them, to establish ABLE programs (NDI, n.d.).22 Lifetime ABLE account contributions are “subject to individual states and their limit for education-related 529 savings accounts,” often exceeding $300,000. Although not all states have established ABLE programs, eligible individuals and their families are free to enroll in any state’s program that is accepting out-of-state residents.23 CHAPTER CONCLUSIONS There a variety of programs and services designed to enable youth and young adults with disabilities to find competitive, stable employment in their communities. While many of the largest VR interventions are not yet supported by rigorous, independent research to confirm their efficacy, efforts are ongoing to collect and synthesize outcome data. The allocation of funds specifically earmarked for providing supported employment services to youth and young adults with the most severe disabilities is a positive step toward closing the employment gap between individuals with and without disabilities. The recent reinvestment in constructing adequate housing for low-income individuals increases opportunities for individuals with disabilities to live independently and better integrate into their communities. By capping rent contributions at 30 percent of adjusted income, these programs reduce the likelihood that individuals will have to forego health care expenses to afford basic living costs. Current research suggests that the demand for integrated housing for low- income individuals with disabilities far exceeds the number of units, resulting in the continued institutionalization of individuals who could benefit from community living. Economic supports, such as the SSI program, provide important financial assistance to help low-income families that have a member with a disability afford the additional costs imposed by the disability. Research suggests that economic support programs have a direct impact on lifting families out of extreme poverty while helping children and youth afford necessary medical treatment and other basic costs of living not covered by other programs. Dual- eligibility standards between SSI and Medicaid have streamlined the application process for families seeking disability services and ensured that more children with disabilities can access the health care they need. Although independence is a key goal for individuals with disabilities in adulthood, they often require individual and system-level support from an engaged community to help them secure accommodations, education, and employment and ensure that their civil rights are protected. Many national advocacy organizations fight for the rights of individuals with 20 The $14,000 maximum is linked to the IRS annual gift exclusion tax. The IRS annual gift exclusion tax was $14,000 for the years 2013–2017; however, this amount will increase to $15,000 for 2018. See https://www.irs.gov/businesses/small-businesses-self-employed/whats-new-estate-and-gift-tax (accessed April 9, 2018). 21 This includes the SSI $2,000 individual resource limit, whereby individuals with $2,000 in assets are excluded from SSI eligibility. If an eligible individual’s account reached more than $100,000, the beneficiary’s SSI cash benefit would be suspended until his or her ABLE account decreased to an amount below $100,000. 22 IRS Issues Proposed ABLE Act Regulations, Association of University Centers on Disabilities (Oct. 25, 2017, 1:00 PM), see https://www.aucd.org/docs/ABLE%20Reg%20Highlights%20Ltrhd(2).pdf (accessed April 9, 2018). (hereinafter IRS Proposed Regulations). 23 See http://ablenrc.org/about/what-are-able-accounts (accessed April 9, 2018). PREPUBLICATION COPY: UNCORRECTED PROOFS

6-28 IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES disabilities through the legal system, awareness campaigns, provision of referrals and direct services, and the organization of events for individuals and their families to enjoy leisure time in the community. These organizations are largely comprised of individuals with disabilities, their family members, legal advocates, and professionals dedicated to enforcing civil rights protections to improve outcomes for individuals with disabilities over the life span. Based on its review of community-based programs for youth and young adults with disabilities, the committee drew the following conclusions: 6.1. The age at which youth with disabilities are no longer eligible for child disability services varies widely across social and human capital development programs, impacting the child’s ability to maintain uninterrupted access to services as she or he transitions to adulthood and achieve valued long-term social and human capital development outcomes. 6.2. The current evidence base reflects a nonintegrated set of transition programs and services focused on near-term outcomes, which yields a piecemeal literature that cannot be stitched together effectively in practice to identify interventions, or service components, that positively affect long-term outcomes for children and youth with disabilities. 6.3. More studies are needed that examine the components of effective transition programs separately and in combination to disentangle their relative utility. The intent would be to (1) better understand which components are critical and demonstrate an impact, as opposed to bundling services and/or interventions; (2) test interventions that target youth prior to SSI (or non-SSI program populations) to determine what the outcomes are in terms of reducing long-term dependency, improving health, and promoting employment; and (3) test the most effective combination of supports for promoting valued long-term outcomes, such as employment and economic self-sufficiency. 6.4. Little information exists on the prevalence of housing programs that allow an individual with disabilities to live in stable, adequate housing with family members. As family members provide vital caregiving, social, and emotional support, information regarding their eligibility to reside with their family member with a disability through public housing programs needs to be more accessible. 6.5. Economic support programs are critical to ensuring that children with disabilities from low-income families are able to afford basic health care and living costs. Without these programs, many more low-income families would be in deep poverty, which is a negative risk factor for achieving near- and long-term outcomes. REFERENCES ACL (Administration for Community Living). 2017a. Centers for independent living. https://www.acl.gov/programs/aging-and-disability-networks/centers-independent-living (accessed February 23, 2018). ACL. 2017b. State councils on developmental disabilities. https://www.acl.gov/programs/aging-and- disability-networks/state-councils-developmental-disabilities (accessed February 27, 2018). ACL. 2017c. State protection & advocacy systems. https://www.acl.gov/programs/aging-and-disability- networks/state-protection-advocacy-systems (accessed February 27, 2018). PREPUBLICATION COPY: UNCORRECTED PROOFS

PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-29 Almazan, S., and D. Marshall. 2016. School vouchers and students with disabilities: Examining impact in the name of choice. Towson, MD: Council of Parent Attorneys and Advocates. https://c.ymcdn.com/sites/copaa.site- ym.com/resource/resmgr/2016_Conference/COPAA_Voucher_paper_final_R6.pdf (accessed December 13, 2017). Areberg, C. 2013. Individual Placement and Support (IPS) for persons with severe mental illness— outcomes of a randomized controlled trial in Sweden. Occupational Therapy and Occupational Science 31. ASPE (Office of the Assistant Secretary for Planning and Evaluation). 2015. The child SSI program and the changing safety net: SSI and TANF program coordination. Washington, DC: U.S. Department of Health and Human Services. Beeson, T., B. D. McAllister, and M. Regenstein. 2013. Making the case for medical–legal partnerships: A review of the evidence. Washington, DC: George Washington University, National Center for Medical-Legal Partnership. BSW (Bridges from School to Work). 2016. Bridges by the numbers. http://www.bridgestowork.org/assets/files/1/files/bridges2016progressreport_121416-.pdf (accessed February 1, 2018). BSW. 2017. Guidestar nonprofit report. Bethesda, MD: Marriott Foundation for People with Disabilities, Inc. https://www.guidestar.org/profile/52-1655740 (accessed December 13, 2017). BSW. n.d. What we do. http://www.bridgestowork.org/about-bridges/what-we-do (accessed February 1, 2018). Burke-Miller, J., L. A. Razzano, D. D. Grey, C. R. Blyler, and J. A. Cook. 2012. Supported employment outcomes for transition age youth and young adults. Psychiatric Rehabilitation Journal 35(3):171–179. CCD (Consortium for Citizens with Disabilities). 2013. CCD comments on PROMISE. https://www.c-c- d.org/fichiers/CCD_Comments_on_PROMISE.pdf (accessed November 15, 2017). City of Hialeah, Florida. 2017. STEP AHEAD program. http://www.hialeahfl.gov/index.php?option=com_content&view=article&id=896&Itemid=995&l ang=en (accessed December 13, 2017). CMS (Centers for Medicare & Medicaid Services). 2017. Ticket to work. https://www.medicaid.gov/medicaid/ltss/employmment/ticket-to-work/index.html (accessed December 17, 2017). CMS. n.d. Money follows the person. https://www.medicaid.gov/medicaid/ltss/money-follows-the- person/index.html (accessed February 26, 2018). COPAA (Council of Parent Attorneys and Advocates). 2014. Stay put essential to students’ rights during hearing pendency. http://www.copaa.org/news/184410/Stay-Put-Essential-to-Protecting-Student- Rights-During-Hearing-Pendency.htm (accessed March 12, 2018). COPAA. 2017. COPAA mission. http://www.copaa.org (accessed December 13, 2017). Davies, P., K. Rupp, and D. Wittenberg. 2009. A life-cycle perspective on the transition to adulthood among children receiving Supplemental Security Income payments. Journal of Vocational Rehabilitation 30(3):133–151. Deshpande, M. 2016. The effect of disability payments on household earnings and income: Evidence from the SSI children’s program. The Review of Economics and Statistics 98(4):638–654. Do, L. L. 2011. Association for Retarded Citizens (ARC). In Encyclopedia of child behavior and development, edited by S. Goldstein, and J. A. Naglieri. Boston, MA: Springer Publishing. DOJ (U.S. Department of Justice). n.d. Statement of the Department of Justice on enforcing the integration mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. Washington, DC: DOJ Civil Rights Division. https://www.ada.gov/olmstead/q&a_olmstead.htm (accessed February 27, 2018). PREPUBLICATION COPY: UNCORRECTED PROOFS

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PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-31 Loprest, P., and D. Wittenburg. 2005. Choices, challenges, and options: Child SSI recipients preparing for the transition to adulthood. Washington, DC: The Urban Institute. Luecking, R. G., and E. S. Fabian. 2015. Paid internships and employment success for youth in transition. Career Development for Exceptional Individuals 23(2):205–221. Luecking, R. G., and D. Wittenburg. 2009. Providing supports to youth with disabilities transitioning to adulthood: Case descriptions from the youth transition demonstration. Journal of Vocational Rehabilitation 30(3):241–251. Mamun, A. A., L. Timmins, and D. C. Stapleton. 2016. Prospects for an impact evaluation of project search: An evaluability assessment. Washington, DC: Mathematica Policy Research. Martin, J., A. Martin, C. Schultze, and M. Sandel. 2015. Embedding civil legal aid services in care for high-utilizing patients using medical–legal partnerships. Health Affairs, April 22. https://www.healthaffairs.org/do/10.1377/hblog20150422.047143/full (accessed February 1, 2018). McCutcheon, A., R. Selekman, and T. Frasier. 2014. PROMISE recruitment, enrollment, and random assignment procedures manual. Washington, DC: Center for Studying Disability Policy, Mathematica Policy Institute. Morris, R. J., and K. C. Thompson. 2008. Juvenile delinquency and special education laws: Policy implementation issues and directions for future research. Journal of Correctional Education 59(2):173–190. Musgrove, M., and M. K. Yudin. 2014. Dear colleague letter. Washington, DC: ED. https://www2.ed.gov/policy/gen/guid/correctional-education/idea-letter.pdf (accessed February 6, 2018). NCIL (National Council on Independent Living). 2018. About NCIL. https://www.ncil.org/about (accessed February 27, 2018). NCMLP (National Center for Medical–Legal Partnership). 2016. Applying the medical–legal partnership approach to population health, pain points, and payment reform. Washington, DC: The George Washington University. http://medical-legalpartnership.org/wp- content/uploads/2016/10/Applying-the-MLP-Approach-to-Population-Health-October-2016.pdf (accessed April 10, 2018). NCMLP. 2018. Health center-based medical–legal partnerships. Washington, DC: The George Washington University, Milken Institute School of Public Health. http://medical- legalpartnership.org (accessed February 1, 2018). NCWD/Youth (National Collaborative on Workforce and Disability for Youth). 2005. Guideposts for success. http://www.ncwd-youth.info/guideposts (accessed December 13, 2017). NDI (National Disability Institute). n.d. Congress passes ABLE Act: Major victory for persons with disabilities and their families. https://www.realeconomicimpact.org/news/?id=460 (accessed March 12, 2018). Newacheck, P. W., M. McManus, H. B. Fox, Y.-Y. Hung, and N. Halfon. 2000. Access to health care for children with special health care needs. Pediatrics 105(4):760–766. ODEP (Office of Disability Employment Policy). 2016. Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities. Washington, DC: U.S. Department of Labor. https://www.dol.gov/odep/topics/pdf/ACICIEID_Final_Report_9-8-16.pdf (accessed December 13, 2017). OFCCP (Office of Federal Contract Compliance Programs). n.d. Recruitment and hiring of qualified individuals with disabilities. Washington, DC: U.S. Department of Labor. https://www.dol.gov/ofccp/regs/compliance/resources_recruit_disability.htm (accessed December 13, 2017). OSERS (Office of Special Education Research). 2016. Texas listening sessions. https://www2.ed.gov/about/offices/list/osers/events/2016/texas-listening-sessions/index.html (accessed December 13, 2017). PREPUBLICATION COPY: UNCORRECTED PROOFS

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Although the general public in the United States assumes children to be generally healthy and thriving, a substantial and growing number of children have at least one chronic health condition. Many of these conditions are associated with disabilities and interfere regularly with children’s usual activities, such as play or leisure activities, attending school, and engaging in family or community activities. In their most severe forms, such disorders are serious lifelong threats to children’s social, emotional well-being and quality of life, and anticipated adult outcomes such as for employment or independent living. However, pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary among federal programs that provide services to this population and national surveys, the two primary sources for prevalence data.

Opportunities for Improving Programs and Services for Children with Disabilities provides a comprehensive analysis of health outcomes for school-aged children with disabilities. This report reviews and assesses programs, services, and supports available to these children and their families. It also describes overarching program, service, and treatment goals; examines outreach efforts and utilization rates; identifies what outcomes are measured and how they are reported; and describes what is known about the effectiveness of these programs and services.

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