Dozens of Texas disability rights and advocacy groups worry a recent opinion from the U.S. Department of Justice could lead to a return of institutionalization for people with disabilities.
In mid-June, DOJ published an opinion that said two foundational pieces of disability rights law – the Americans with Disabilities Act, or ADA, and Section 504 of the Rehabilitation Act – don't impose an "integration mandate" on states. Advocates said the reinterpretation of federal law "undermines" the rights of people with disabilities.
"The risk is re-institutionalization," said Jenny Stonemeier, CEO of REACH – a North Texas nonprofit that operates several independent living centers throughout the region. "It's segregation of people with disabilities."
Advocates, like Stonemeier, said integration mandates are based on the principle that people with disabilities must have access to the opportunity to live, work and participate in their community.
More than 25 Texas organizations, including REACH, have signed onto a joint statement urging policymakers and other stakeholders to ensure that laws, funding decisions and implementation practices "continue to uphold the rights of people with disabilities to choose where and how they live."
The DOJ opinion doesn't change law – but advocates still "alarmed"
In its own public statement, Disability Rights Texas – the protection and advocacy agency for Texans with disabilities – "strongly opposed" the DOJ opinion. The organization's statement emphasized that the opinion does not invalidate existing court decisions or relieve states of their responsibility to provide services to people with disabilities.
"That said, there are potential threats ahead in terms of the integration mandate and the right to be free from unnecessary institutionalization," Disability Rights Texas said. "Because this memo purports to establish the legal position of the federal government, it could affect how federal agencies, like the Department of Justice, investigate complaints, enforce disability rights laws, and oversee state service systems."
The organization also warns the opinion could unwind past settlement agreements – or be cited in future legal actions to narrow the scope of community integration protections.
Stonemeier said it's concerning the DOJ took the time and effort to publish a document that "suggests that states are not necessarily required to follow the law."
"There's a concern that it might be a signaling of what's to come," she said. "I don't know what that might be. It's troubling."
People with disabilities worry about losing "hard-fought" independence
Abby Maddox, a 26-year-old advocate with Down Syndrome, lives in an apartment in North Richland Hills with a roommate and works at a UPS retail store. She values the independence she's been able to access with the help of programs that provide people with disabilities services in their own community.
"If [support from those programs] all went away, I would have to move out of my apartment," Maddox said. "I would have to move back in with my parents or live in an institution. It depends what my family wants."
Maddox said the programs that she utilizes – like Medicaid, Supplemental Nutrition Assistance Program, or SNAP, and a workforce support program – represent freedom to her.
"Being independent means that all people with disabilities can show that we are capable of doing things on our own," Maddox said, "that we're able to follow our dreams by being independent."
Maddox, who also serves on the Texas Council of Developmental Disabilities, said she would be depressed without the independence she built for herself.
It's taken a lot of time and effort for her and her family to learn how to navigate the systems that support her needs for work, transportation and personal care.
Maddox's mother, Laurie Maddox, said the family wouldn't be able to provide the same level of resources.
"It'd be heartbreaking," she said. "If you take away some of these choices and only have one possibility, that's not really a choice. You have to do what you're being told to do. I don't want that for my daughter or any other person with a disability like hers."
The services that Abby Maddox and other people with disabilities rely on are built on the language in Section 504 and the ADA – as well as the U.S. Supreme Court's 1999 landmark Olmstead decision that found the "unjustified segregation" of people with disabilities is a form of unlawful discrimination under the ADA.
The court determined states are required to provide community-based services for people with disabilities under certain conditions, including when integration is appropriate and when the person receiving resources wants to remain in their community, according to the U.S. Department of Health and Human Services.
As a result, DOJ and HHS implemented "integration mandates" that required services to be delivered "in the most integrated setting appropriate" for the person with a disability.
Stonemeier said integration mandates are critical to the "hard-fought" and "hard-won" right for people with disabilities to choose how they want to live.
But, the recent DOJ opinion, which was issued on the anniversary of the Olmstead decision, said the Supreme Court's opinion does not reaffirm the mandates.
"This is not abstract," Stonemeier said. "It's very real. …Our concerns for weakening the integration mandates can mean the difference between living at home with support or being pushed into a setting that someone is not choosing to live in and that may not be the best place for them."
For the disability community, advocates said if the DOJ opinion is enforced, it could mean returning to a time of institutionalization.
"Individuals were held in rooms with no beds and no chairs," Stonemeier said. "They were not allowed to be clothed. They were emaciated and starving and harming themselves because they did not have any of the most basic human needs met, much less the more complicated needs for the ability to communicate with someone, the ability to have wounds treated."
Stonemeier said everyone should pay close attention to the aftermath of the DOJ decision because it could influence the services they have access to if they have a disability in the future.
"We can very often and very comfortably think, 'Oh, that affects somebody else,' until something catastrophic happens," she said. "It's the one group that anybody can become a part of through accident through, you know, illness, through any number of things."
Abigail Ruhman is KERA's health reporter. Got a tip? Email Abigail at aruhman@kera.org.
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