The Past and Future of Developmental Disability Laws

Small boy climbing a ladder looking inquisitive

The journey toward inclusion for individuals with developmental disabilities has undergone significant milestones.

One of the earliest identifiers was the passing of the Developmental Disabilities Act in 1963. Under President John F. Kennedy, the act initially addressed the lack of inclusion in state-run institutions for individuals with developmental disabilities. But, through time, the act was shaped to “assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life.”

In 1969, California passed the Lanterman Developmental Disabilities Services Act. For the intellectual and developmental disability (I/DD) community, the Lanterman Act provided community and personalized support for individuals with developmental disabilities and their families. The passage of the Americans with Disabilities Act (ADA) in 1990 laid the foundation for protecting the rights of I/DD individuals at the federal level. The ADA enforces equality in employment, transportation and access to public services and accommodations. Easterseals provided a great deal of support in advocating and lobbying for the passage of the ADA.

Growing Barriers to Achieving Equal Access for the I/DD Community

Despite the progress made through legislation like the Lanterman Act and the Americans with Disabilities Act, there are still roadblocks to equal access and opportunities. Many people within the neurotypical community remain uninformed about the challenges the I/DD community faces, perpetuating systemic barriers– including enforcement difficulties, lack of community understanding, severe underfunding and inflexibility of policies.

Enforcement

While supportive policies are vital to building an equitable and accessible world, those policies are meaningless without effective enforcement. Compliance is overseen by courts and federal agencies and in most cases, these mechanisms require someone to register a complaint or file a lawsuit in response to a violation. Both forms of enforcement are time and resource-consuming. They also often require the complainant to divulge personal information that they may not feel comfortable sharing. And, violations can go unaddressed, which perpetuates the issues and demoralizes the people these policies are designed to support.

ADA “testers,” plaintiffs who are not directly impacted and who file lawsuits against non-compliant entities for enforcement, have played an essential role in bringing disability laws to life. However, the viability of ADA testing has come under scrutiny. To protect this important enforcement approach, Congress could create legislative protection for ADA testers, said Catalight Legislative Researcher and Policy Architect Rachel Liebert Lewis.

Funding

Disability services are chronically underfunded across the nation, causing care professionals to leave in pursuit of higher wages. As a result, those in need and their families are too often left sitting on the sideline. Until services are appropriately funded, said Liebert Lewis, the disabled members of our communities will be deprived of the important support to which they are legally entitled.

Policy Flexibility

Representing approximately 15% of the global population, the disability community is commonly recognized by The World Health Organization as “the world’s largest minority.” While strength in numbers lends power to disability advocates, diverse needs within the community often divide them.

Many advocates push for “all or nothing” policies that do not reflect the spectrum of needs and experiences. One size never fits all, said Liebert Lewis, and while crafting nuanced policy can be challenging, doing so is essential to meet the needs of all who are impacted.

One approach to break down barriers is to prioritize social-focused teaching in classrooms and community settings, Liebert Lewis said. By integrating lessons on disability rights and inclusion into school curriculums and promoting awareness campaigns, communities can foster a more inclusive world where everyone is valued and respected.