Background
Poor post-school outcomes have been an issue for young adults with deaf-blindness since researchers have collected data on the population. They have low rates of employment, post-secondary education, and community engagement, and most live at home with their parents. Recent legislative changes and policy directives, however, are providing an opportunity to change expectations and outcomes for these individuals and all people with significant disabilities.
The Recommendations to Improve Transition Outcomes for Students with Deaf-Blindness and Additional Disabilities were developed to ensure that students with deaf-blindness and long-term support needs are included and can access quality lives in their communities. Based on current laws, policies, and best practices, they provide information and recommendations in six essential areas:
- Training and technical assistance
- Work experiences
- Community activities and living
- School-adult agency collaboration
- Qualified personnel
- Family education
Although not within the scope of these recommendations, it is essential to recognize that preparation for a successful transition also includes high-quality early intervention and education services. They must include ensuring that each student: (1) attains communicative competence before exiting the educational system and (2) receives access to the general education curriculum throughout their school years and thus the opportunity to develop critical literacy and numeracy skills needed to succeed in post-secondary training or the workplace.
Population Overview
According to the annual deaf-blind child count (NCDB, 2016) the total number of students with deaf-blindness, aged birth through 21, was 9,635 in 2016. Just over 40% were transition age (14 through 21), although the percentage of transition-age students varies considerably from state to state, ranging from a low of 15% to a high of 57%. Nearly two-thirds have an intellectual disability in addition to combined hearing and vision loss. Over half (52%) have a physical or orthopedic disability, and over 40% have complex healthcare needs.
For the purposes of these recommendations, we refer to this population as students with deaf-blindness and additional disabilities. A key characteristic is that they have ongoing long-term support needs that require connecting with developmental disabilities, mental health, vocational rehabilitation, and other services during their transition to adulthood. Many will be connected to developmental disabilities services throughout their lives.
To support families and young adults with deaf-blindness and additional disabilities, state deaf-blind project personnel must have in-depth knowledge of evidenced-based transition practices that promote meaningful, community-based adult lives. They must know how adult systems in their states function and use this knowledge to provide technical assistance to schools, families, and adult agencies.
Transition Outcomes Research
Research over the past two decades has found that post-school outcomes are poor for youth with deaf-blindness. Data collected in the 1990s indicated that most were unemployed, still living at home with parents, and socially isolated (Petroff, 1999). More recent data, collected via a survey conducted in 2016-2017, suggests that while outcomes have improved slightly, the vast majority (76%) do not work for pay (Petroff & Pancsofar, 2018). The survey was completed by 93 respondents who reported on a young adult (average age 24.5) with whom they were affiliated, who had left school.
Table 1. Respondents Relationship to Youth with Deaf-Blindness
| Relationship | Percentages |
|---|---|
| Parent/Guardian | 65% |
| State Deaf-Blind Project Staff | 5% |
| Teachers | 1% |
| Other | 29% |
Preparation While in High School
To examine outcomes and transition services for the subset of youth who had disabilities in addition to deaf-blindness, we isolated those who had an intellectual disability, as reported by 37 of the 93 respondents.
The study found that although these individuals received a significant amount of planning for transition while in high school (89% discussed transition during IEP meetings, 41% had additional meetings about transition, and 43% had person-centered planning meetings), it did not result in high expectations for a life in the community or lead to implementation of specific strategies to prepare for employment and community living. Just a small percentage, for example, had employment experiences. Only 5% received preparation for sub-minimum wage employment in a sheltered workshop, only 26% received instruction in the community, and only 8% participated in supported employment. Approximately half did not receive preparation for any type of work or community engagement.
Table 2. Employment Experiences While in High School
| Experience | Percentage |
|---|---|
| Connected with vocational rehabilitation | 32% |
| Job coaching | 19% |
| Job sampling | 22% |
| Summer internship or job | 16% |
Expectations for and Barriers to Employment
According to the Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities (2016), young adults whose families have an expectation that their child will work as an adult have better employment outcomes than those who do not. When asked why youth were not working, however, many families and other respondents in the Petroff and colleagues 2018 study, gave a number of reasons consistent with low expectations.
Respondents also reported barriers to employment, including a lack of support services, lack of job training programs, no one to help find a job, no jobs in the area, and lack of transportation.
Table 3. Reasons for Not Working
| Reason | Percentage |
|---|---|
| Employment an unrealistic goal | 35% |
| Lacked skills to work | 27% |
| Poor health | 22% |
| Individual didn't appear to want to work | 11% |
Educational Outcomes
According to the National Longitudinal Transition Study-2 (NLTS2), youth with deaf-blindness are less likely to attend a post-secondary institution (Newman et al., 2011). Data collected in 2009, found that approximately 10 to 32% were enrolled in a 2- or 4- year college. Additionally, around 22% reported attending a vocational or technical school. Typical transition goals for students with deaf-blindness in this study focused on independent living skills and non-competitive employment, rather than post-school education. These statistics did not specify if these students with deaf-blindness also had additional disabilities.
Family Perspectives
In 2007, the National Family Association for Deaf-Blind (NFADB) conducted a survey of families of youth with deaf-blindness who were still in school and in the process of transitioning to adult life (age 12 to 21) or who no longer attended school (age 22 and older). The results, which the organization used to develop a position paper (Peracchio & Stetler, 2009/2010), indicated how crucial it is to parents that their children lead happy, meaningful, adult lives and will be safe and secure after they, the parents, have died. But they also reported significant barriers to achieving these desires, particularly a lack of qualified personnel to serve their children.
Other results from the survey echoed the findings from the Petroff and Pancsofar study discussed above, including low rates of employment, most children still living at home, and inadequate transition services. To meet these challenges, NFADB stresses (a) the importance of access to accurate and timely information that parents and other family members can use to advocate for services that promote successful adult life outcomes and (b) ensuring they are deeply involved in the transition process.
Table 4. Barriers to Achieving a Meaningful Adult Life Reported by Parents
| Barrier | Percent of Parents |
|---|---|
|
Lack of qualified personnel at school and in adult services |
80% |
| Insufficient funding for services | 76% |
| Limited access to appropriate services | 70% |
Approximately 20% indicated they encountered all of these barriers.
Summary
The data suggest that individuals with deaf-blindness and additional disabilities are not expected to work in the community, live outside their parents’ homes, or have a full life after graduation. Most are not connected to vocational rehabilitation during school or after, nor do they have community-based work experiences or paid employment while in school. It appears that many parents and guardians do not believe their child is capable of working or expect them to work and be contributing members of their communities.
Changes in national laws beginning in 2014, and the evolution of state policies and practices related to transition and community life, including employment, for young adults with disabilities, has opened a window for students with deaf-blindness and additional disabilities to experience better adult lives. The purpose of this guide is to inform and support the Deaf-Blind Technical Assistance Network (state deaf-blind projects and the National Center on Deaf-Blindness) to become knowledgeable about resources and practices in their states that enable them to provide high-quality technical assistance to state education agencies, local education agencies, families, developmental disabilities services, vocational rehabilitation services, and community rehabilitation providers on behalf of students with deaf-blindness and additional disabilities.