On July 26, 1990, President George H.W. Bush signed into law transformative legislation known as the Americans with Disabilities Act. It was a major victory for the rights of people with disabilities, not just in the United States but globally.
Over the last 30 years, the ADA has become a global model for disability access and inclusion, prohibiting discrimination on the basis of disability in employment, public accommodation, public services, transportation and telecommunications. In 2008, Congress passed the ADA Amendments Act to modify the narrow way courts were defining disability, to keep the focus on whether discrimination had occurred.
But more must be done to realize the ADA's promise of full inclusion. New legislation is needed to ensure that people with disabilities are included in communities, rather than being forced to live in institutions. The United States also needs to ratify the U.N. Convention on the Rights of Persons with Disabilities, which it fell six Senate votes short of doing in 2012.
The U.S. Supreme Court has found that under the ADA, isolating or segregating people with disabilities is a form of discrimination. Yet many states do not provide the long-term services and support needed to end the segregation of people with disabilities in institutions. The Disability Integration Act was introduced in the House of Representatives in 2017 to address this.
The bill, currently stalled in the House, would require insurance providers and government entities to provide long-term services and support so that people with disabilities can live in integrated settings, including their own homes. The goal is to give people control over their services so they have the support they need to lead independent lives.
State governments also need to adopt new policies to adequately ensure everyone's right to live independently. For example, Jason DaSilva, a filmmaker who has multiple sclerosis, was prevented from moving from New York to live near his son in Texas because Texas didn't have the support services he needs. Other states, including Illinois, Florida, Louisiana and Ohio, also lack sufficient services to enable people with disabilities to live in the community.
And although the ADA was used as a model for drafting the U.N. Convention on the Rights of Persons with Disabilities, it lacks explicit provisions to ensure that people with disabilities in the United States have full legal capacity to make all decisions relevant to their own lives.
This has led to the disenfranchisement of many people with disabilities who are still under guardianship and other forms of substituted decision-making. This leaves the door open for egregious abuse, like what happened in Nevada to Rudy and Rennie North in 2013. The pair of citizens with alleged cognitive disabilities were put under guardianship by third parties who robbed them.
Meanwhile, the Trump administration has tried to weaken state protections for people with disabilities, including by softening regulations on accessibility and limiting the scope of the Affordable Care Act, which allows people with disabilities to get health insurance regardless of preexisting conditions. These efforts were unsuccessful in part because of pushback from disability activists in the United States.
On the ADA's 30th anniversary, we should celebrate all of the disability rights movement's achievements. But this is also a time to reflect on what's still missing to make sure that all people with disabilities are included in the United States.
ABOUT THE WRITER
Carlos Rios-Espinosa is a senior disability rights researcher and advocate at Human Rights Watch. This column was produced for the Progressive Media Project, which is run by The Progressive magazine, and distributed by Tribune News Service.