Milestones in Community-Based Services

The Evolution of Community-Based Services for CSHCN

  • 1800s - Attitudes to disabilities
    People with mental illness and physical disabilities were often placed in institutions, such as hospitals. People with intellectual disabilities mostly lived at home and were cared for by loved ones.
  • 1909—White House Conference on Dependent Children
    summoned by President Theodore Roosevelt.
  • 1912—Federal Children's Bureau (USCB) is created.
    The USCB was created to protect "welfare of children." USCB focused on juvenile systems, orphanages, child labor laws, and infant mortality.
  • 1914-1918 World War I and its influence on intellectual disability attitudes.
    During World War I, the number of intellectual disability cases rose as many army recruits were discovered to be "feeble-minded." As a result, some states passed the laws that ordered sterilization of people with ID.
  • By 1920—Child Hygiene Bureaus
    established in 28 states.
  • 1921- 1929—Passage and repeal of the Sheppard-Towner Act (The Maternity and Infancy Care Act)
    The Act funded state programs that promoted maternal and child health, and established MCH units at state health departments. It proved to be highly controversial, as many, in particular the American Medical Association, perceived it as socialist. Nevertheless, it set the stage for federal support of states health programming. It would later reemerge as Title V of the Social Security Act.
  • August 23, 1935 -- Social Security Act
    President Franklin Roosevelt signed the Social Security Act into law allowing the federal government to support state efforts to expand health and welfare services. Upon signing the SSA, President Roosevelt said, "We can never insure one hundred percent of the population against one hundred percent of the hazards and vicissitudes of life, but we have tried to frame a law which will give some measure of protection to the average citizen and to his family against the loss of a job and against poverty-ridden old age."
  • 1935—Title V of Social Security Act
    Title V recognized and supported the needs of families, women and children. Block grants were established to support various community-based maternal and child health programs. Some funds were also allocated to services for CSHCN, who were then called "crippled children."
  • 1938—March of Dimes
    The National Foundation for Infantile Paralysis was founded in response to the polio epidemic and its profound impact on American children.
  • 1944—Association of Directors of Maternal and Child Health (AMCHP)
    Now called AMCHP, it serves as a focal point for state directors of various MCH programs.
  • 1950's—Attitudes to intellectual disabilities shift.
    Mainstream culture personas such as entertainer Roy Rogers and writer Pearl Buck break the silence by speaking about the "taboo" subject of having a child with a disability. These stories attempt to remove shame and stigma from the condition and emphasize strength and courage of individuals with ID.
  • 1953—National Association of Retarded Children (NARC)
    is founded by group of parents of children with intellectual disabilities.
  • 1954—Martha Eliot identifies children with intellectual disabilities as a priority group.
    The chief of Federal Children's Bureau claimed in her report to Congress that children with ID are one of the groups that deserve special attention. 1956—Social Security Disability Insurance (SSDI) passed,
    providing support to people with disabilities who are unable to work.
  • Early 1960s—Intellectual disability becomes national priority.
    As a result of having a sister with an intellectual disability, President Kennedy organizes a panel on Mental Retardation. Title V began to support more research and interventions addressing intellectual disabilities.
  • 1965 - Enactment of Medicaid and Medicare.
    Medicaid was created to provide coverage for women and children of low-income or with disabilities.
  • 1970 - Developmental Disabilities Act
    Each state establishes a Developmental Disability Council (DD Council). DD Councils worked on improving services available to persons with disabilities and their families.
  • 1975 - Education for All Handicapped Children Act
    It ensured that all children with disabilities receive free and appropriate education in the least restrictive environment possible. This act's name was changed to the Individuals with Disabilities Education Act (IDEA) in 1990.
  • 1987—Surgeon General addresses children with special health care needs.
    The report starts a campaign aimed at improving the lives of CSHCN/ Family-centered care and community-based services are emphasized as means to improvement. 1990—Maternal and Child health Bureau (MCHB)
    is established within Health Resources and Services Administration (HRSA).
  • 1990—Bright Futures Initiative
    Bright Futures Pediatric Guidelines were written to improve the quality of care for all children. The initiative focused on prevention and partnership between the families and the providers.
  • 1992—Family Voices founded.
    Family Voices promotes the involvement of families as partners in all aspects of decision-making affecting lives of CYSHCN. It empowers and supports families, advocates for CYSHCN and actively promotes family-centered models.
  • 1998 - The emergence of "Children with special health care needs (CSHCN)" concept.
    A federal definition of CSHCN emerges and is officially adopted by Title V and American Academy of Pediatrics. This definition was more inclusive, especially for children with very rare conditions.
  • 2001—The National Survey of Children with Special Health Care Needs
    For the first time in history, a survey gathered information specifically on CSHCN. The questions were prepared with the input from families of CYSHCN.
  • March 23, 2010—Patient Protection and Affordable Care Act
    President Obama signs the Patient Protection and Affordable Care Act (ACA), the most major health care reform in over 70 years. The ACA aims to expand health care coverage to all Americans.