Abstract
Almost forty years after the passage of laws mandating that children with disabilities receive supports to attend public schools, the disparity between legislative intent, public policy, and practice is still very large for far too many youth with disabilities. As students leave high school for the adult world, they and their parents are faced with inadequate preparation, uncertainty, fragmented information, and lack of services.
Over the years as generations of students with disabilities have graduated from high school or aged out of special education programs in their early twenties, professionals in the education and service provision worlds have worked to improve the transition experience. Their Time Has Come provides evidence through the words of students with disabilities, parents, and professionals that for many students and their families much more needs to be done.
Valerie Leiter provides a primer on the legal foundations for the rights afforded youth with disabilities and then, through the words of those affected—youth themselves, their parents, and those who provide services—illustrates what is working, and what is not. Her book contains richly nuanced interviews with youth with disabilities and their families, providing insights and compelling evidence that the system does some things well for some children, but does other things poorly and inconsistently for others. Also clearly documented is that the burden of seeking information and evaluating it is placed on parents of youth with disabilities. Parents are left on their own to seek information about vital issues like eligibility for adult services and what services might be available for youth with disabilities. Many parents report that although they reach out to educators in their child’s school, their best resource is finding a parent whose child’s disability is similar and who is a few years older to help them navigate the system. The parents Leiter interviewed report attending meetings and resource fairs and assembling thick notebooks of information that might be found in professionals’ offices. Some parents were helped by local nonprofits, but for those with limited language in English or limited time, locating and accessing transition information was a vast barrier to overcome.
Once basic information is assembled, parents reported being faced with the lack of service availability. This was clearly an issue with those seeking residential services, as vacancies in a community residential program can occur rapidly or can take years to become available. While wealthier parents could purchase apartments or houses for their children, those who were not able to do so were left to try to access limited housing options or residential programs on their own, with no concrete time line.
For students who are planning to attend college and were enrolled in public high schools, again, parents were the main resource. Students reported guidance counselors in their public high school were unaware of which colleges were accessible to students with disabilities and which took the mandate to provide educational supports under the Americans with Disabilities Act (ADA) seriously. Leiter found that schools supporting students with disabilities fared better in informing students about the college experience, and staff was more likely to have contacts and experience to help ease students’ transition.
Little has been written about this subject and as budgets are tightened, information “on the ground” about how services are working for students leaving school is particularly important. In the last decade, the Social Security Administration has funded demonstration projects designed to affect the outcome of youth receiving Supplemental Security Income who are in transition from school to work with the ultimate goal of improving outcomes for youth with disabilities. Those interviewed in this book describe eloquently why these projects are needed.
Perhaps the most compelling aspect of Leiter’s work is that it documents the need for schools to improve efforts to encourage decision-making and self-advocacy during the school years, so that as students age out of programs, they have experience in making informed choices about their future lives. Leiter’s chapter, “Participation and Voice” documents the involvement (or lack of it) by students, as important choices about their academic preparation and supports to achieve that preparation are discussed. The book reveals that the IDEA may require participation of students with disabilities, but the practice of constructing Individualized Education Plans (IEP) is far from consistent across schools. While some parents and students felt supported in IEP meetings, others described the process as adversarial, and where some students felt their needs and concerns were heard, others did not attend meetings where their future was discussed.
The theme of the need for self-advocacy recurs throughout, as Leiter explores topics ranging from college choice to living arrangements and vocational planning. Some schools—particularly private schools dedicated to serving students with disabilities—explicitly saw developing students’ decision-making skills by exposing them to a variety of opportunities as a key responsibility, but many did not.
Policymakers interested in how to ease the transition experience for students with disabilities will find that this volume provides a concise road map of how to improve services to students and their parents. Where students express concerns about their future plans, parents clearly express great anxiety, often concealing the extent of their anxiety from their children while actively seeking assistance to assemble and decode information about adult service systems and college services.
Leiter’s work is valuable in providing a succinct illustration of issues related to transition. One of its strengths is its brevity, which may persuade policymakers and educators to read it, but it is also noteworthy because it is one of the few studies about transition that utilizes the words of those affected to describe their experience. The summary chapter, “Missing Links” is helpful in its concrete and constructive conclusions about how to make the transition experience easier, more productive, and more positive for youth with disabilities.