America’s History of Demanding Better for People With I/DD

Our country has a rich history of demanding better for people with intellectual and developmental disabilities. All along the way, community providers have been at the heart of the fight. As we wrap up Developmental Disabilities Awareness Month, this article takes a look at some of the key milestones that have shaped our quest for a more inclusive society in the six decades since the Medicaid program was created to support people with disabilities.

1972 — The Willowbrook Exposé

For decades, families were told the most compassionate choice for a child with an intellectual disability was placement in a state institution.

That changed in 1972 when investigative journalist Geraldo Rivera exposed conditions inside Willowbrook State School on Staten Island. Footage showed children living in overcrowded wards, sitting in filth, without basic care or meaningful human contact.

Public outrage was immediate. A class-action lawsuit, New York ARC v. Rockefeller, forced reforms and opened the door to community placement. After Willowbrook, the public could no longer ignore the realities of institutional care.

1975 — Education for All Handicapped Children Act

Before 1975, more than one million children with disabilities were excluded from U.S. public schools, and millions more received little meaningful education. Many were labeled “uneducable.”

The Education for All Handicapped Children Act (Public Law 94-142), signed by President Gerald Ford, guaranteed children with disabilities the right to a free and appropriate public education in the least restrictive environment.

The law introduced Individualized Education Programs (IEPs) and ensured parents had a voice in educational decisions. Reauthorized in 1990 as the Individuals with Disabilities Education Act (IDEA), it continues to shape special education today.

1990 — The Americans with Disabilities Act

In July 1990, President George H.W. Bush signed the Americans with Disabilities Act into law, declaring that the “shameful walls of exclusion” must come down.

The ADA prohibited discrimination based on disability across employment, public accommodations, transportation, and government services. For people with I/DD, it reinforced that disability rights are civil rights.

While implementation has evolved over time, the ADA marked a turning point: people with disabilities were formally recognized as full participants in public life.

1999 — Olmstead v. L.C.

Two women with intellectual and mental health disabilities were kept in a Georgia psychiatric institution even after professionals determined they were ready for community placement.

Their advocates sued under the ADA. In 1999, the Supreme Court ruled in Olmstead v. L.C. that unnecessary institutionalization is a form of discrimination.

The decision required states to provide services in the most integrated setting appropriate to a person’s needs. Olmstead became the legal foundation for modern home-and community-based services across the country.

2010 — Words Have Weight

Rosa Marcellino was nine years old when her family began advocating to remove the term “mental retardation” from federal law.

Their effort led to Rosa’s Law, signed by President Barack Obama in 2010, which replaced the term with “intellectual disability” throughout federal statutes.

For Rosa and many others, the change was about more than language. As her brother Nick told lawmakers, “What you call people is how you treat them.”

2026 — What Demanding Better Looks Like Today

The call to demand better has always focused on improving the lives of people with intellectual and developmental disabilities.

Today, providers face workforce shortages, policy shifts, and rising expectations around quality and accountability. Agencies are exploring new ways to track outcomes, streamline documentation, and strengthen services.

The demand for better has never stopped. Today, providers are carrying that work forward, pushing for better support for their teams, stronger outcomes for individuals, and systems that help them navigate an increasingly complex landscape.

See how Giv is demanding better from I/DD software.

Bentley Smith is the Marketing Enablement Manager at Giv.