Their Time Has Come: Youth with Disabilities on the Cusp of Adulthood

2. The Rules Have Changed

14 The Rules Have Changed One hundred years ago, a child born with a disability would have been kept at home and would have received no public services, or would have been placed in a public institution surrounded by others labeled as having similar disabilities. Such children became the responsibility of the state in which they resided and often had little or no contact with their families. Parents who chose to keep their children at home bore the entire responsibility for their education and care. There was no middle ground (see Leiter 2004b). Physicians, social workers, and other professionals with whom parents came in contact tried hard to convince them to institutionalize their children young, even at birth. They told parents that they could not care for their children adequately at home and that the “state school” would give them the skills they needed. For example, in Washington State in the 1930s, some schools had public special education programs, but administrators used them to identify children to be sent to state institutions.1 Schools did not want to serve children and youths with disabilities and largely were able to deflect parents’ attempts to obtain public education for their children. By one estimate, only 15 percent of children with intellectual disabilities in the 1960s who were living with their families received special education in public schools (see Mackie 1969). In a letter now housed at the Smithsonian Institution, a school staff member from the nurse’s office at the Carlstadt, New Jersey, public schools 2 THE RULES HAVE CHANGED 15 wrote in 1951 to the New Jersey Parents Group for Retarded Children about a mother who demanded a public education for her children with intellectual disabilities, reporting that the mother refused to commit them to a state institution and “apparently has been unable to accept the fact that her children cannot be taught in the Public or Trade schools.” The letter goes on to ask: “Do you have any literature, or suggestions which might aid us in helping this mother accept and solve her problem?”2 Parents were on their own if they did not accept institutionalization as the public solution to caring for and educating their children. Much has changed in the fifty years since. Now we have predominantly community-based education and services for children and youths with disabilities, as a result of incremental changes in federal law since the 1970s. Federal policies now give children and youths access to services to maximize their capabilities and civil rights legislation designed to remove architectural and attitudinal barriers. Infants and toddlers identified as developmentally disabled or delayed are eligible for early intervention services meant to maximize their development and provide support to their families. Children with disabilities have a right to a public education. And federal legislation has given children, youths, and adults with disabilities additional civil rights to improve their access to resources and to reduce discrimination against them. Individuals with disabilities who are coming of age at this moment are the first generation in U.S. history to benefit throughout childhood from disability policies designed to improve opportunities for learning, working , and living in local communities. While earlier generations may have benefited from some of these changes, this is the first to have grown up entirely under these new rules. Yet many young people and their families are not entirely aware of these new rules and the rights they provide. This chapter asks and answers two questions: How and why were these new rules created? and How does disability policy now provide opportunities to youths with disabilities? The answer to the first summarizes the story of the disability rights movement as it relates to improving opportunities for youths with disabilities, helping us understand how and why we have the current rights and service systems. The answer to the second describes the resulting federal policies that currently provide rights and educational and employment services to youths with disabilities. CHAPTER 2 16 How Did We Get Here? I bring a youth-focused lens to the story of the disability rights movement here, showing how it shaped the opportunities for young people with disabilities in the United States and helping us understand the origins of current policies and approaches. There were three waves of the disability rights movement. The first was organized by parents of children with disabilities , and the second by adults with physical disabilities. In the third wave...