The Lurie Institute for Disability Policy

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Starr Center History and Overview

Since 1967, the Heller School has supported a specialized program in applied research and social policy analysis in the field of intellectual and developmental disabilities. In 1985, the Nathan and Toby Starr Center was created to support the program's educational, research, and public engagement activities.

Over the last three decades, the Heller School's commitment to advancing knowledge and social justice for persons with intellectual and developmental disabilities has led to more reasoned social policies, greater understanding of the lifelong consequences of disabilities for individuals and their families, and heightened public awareness of the critical role of public policies to ensure necessary supports. As a unique national resource, the Starr Center's active engagement with state and federal commissions, public and private advocacy organizations, and the international community of scholars and activists in the disabilities rights field has demonstrated its dedication to improving the quality of life for individuals with intellectual and developmental disabilities within our society.

Developmental disabilities are a group of conditions associated with impairments in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime. Developmental disabilities occur among all racial, ethnic, and socioeconomic groups. Recent estimates in the United States show that about one in six, or about 15%, of children aged 3 through 17 years have a one or more developmental disabilities. Government-sponsored programs provide a wide range of educational, health, and supportive services, but families provide for many of the daily needs of people with intellectual and developmental disabilities throughout their lives.

Since 1967, the Heller School has sponsored a graduate-level educational program and conducted policy-relevant research focused on the needs of persons with intellectual and  developmental disabilities and their families, and the federal, state, and local public policies that serve these populations. In 1985, the Nathan and Toby Starr Center on Intellectual and Developmental Disabilities was established with a modest endowment. This secured a permanent focus for the Heller School in supporting the education of the next generation of leaders in disability policy and research.

The Center's research activities are focused on the context and consequences of long-term family-based care for persons with intellectual and developmental disabilities and the evaluation of social policies that support individuals with intellectual and developmental disabilities and their families across the life span. Among its many landmark studies are:

  • The first systematic analysis of the implications for service agencies of the programmatic needs of persons with intellectual and developmental disabilities who are elders.
  • The largest study ever conducted of elderly parents with adult children with intellectual and developmental disabilities living at home and the need for greater federal and state support for expanded residential options.
  • A long-term study of the effects of early intervention services for infants and toddlers with disabilities on the children's development and the adaptation of their families to the gratifications and challenges of having a member with a disability.
  • A national study of the issues facing families of children with special health care needs in the health care systems of the U.S.

Faculty and research staff of the Starr Center are leading scholars in the field as well as active in a wide range of state and federal commissions. Public engagement is the hallmark of the Heller School and its faculty, and we work daily to get the message out about contemporary and future policy options that will provide responsive and necessary care for persons with mental retardation and other disabilities across their life span.

The Nathan and Toby Starr Center collaborates with individuals, families, providers and government officials on research and evaluation that advances inclusive disability programs and policies. There are only a limited number of university-based educational and policy centers in the country that focus on the needs of persons with intellectual and developmental disabilities. Continued growth of the Starr Center is critical to our nation's capacity to extend the astounding progress that has been made over the last 50 years in the lives of persons with disabilities - including the development of community-based systems of support, the increased movement of persons with disabilities into competitive jobs, the availability of a variety of residential options, and the emergence of a self-advocacy movement that will continue to advance the inclusion of persons with disabilities in all aspects of modern life.

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