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News reports suggesting that states may no longer have to provide in-home or community-based care for adults with disabilities or autism are inaccurate, according to attorney Scott Mendel.
In an exclusive interview with The Defender, Mendel explained why a recent opinion issued by the U.S. Department of Justice (DOJ) shouldn’t alarm parents who are caring for an adult with autism.
The DOJ opinion, issued last month, also had disability rights advocates up in arms who feared it would let states put people with disabilities into discriminatory state-run institutions.
Mendel — who has practiced law for 50 years and is chairman of Together for Choice, a nonprofit working to expand the housing options for people with intellectual and/or developmental disabilities — broke down what the memo was, and what it actually said.
The opinion — written by the DOJ’s Office of Legal Counsel at the request of the White House Council — doesn’t create or change any law, Mendel said. “Its impact is actually very limited,” he said.
Mendel explained:
“The role of the Office of Legal Counsel is to give legal advice to the executive branch. So it gives legal advice to all the administrative agencies within the executive branch and to the White House. … But it doesn’t have any precedential value in court, and it doesn’t have any impact on states, except to the extent that it tells you what the federal government will do in terms of enforcement actions and that sort of thing.”
As a father of an adult daughter with cerebral palsy, Mendel said he is “very concerned” about the quality of services and housing available to people with disabilities.
But he said he didn’t see anything in the 39-page opinion that would force states to stop providing home- and community-based services for people with disabilities, or stop reimbursing families that care for an individual in their own home, if that is what the state currently provides.
Home and community-based services are already enshrined in social security law, he said.
Abusive state-run institutions: ‘Nobody wants to go back to that’
News outlets had a different take than Mendel on the DOJ opinion.
Maria Town, president and CEO of the American Association of People with Disabilities, told PBS that the opinion represented a dangerous break with legal precedent.
“If states decide not to follow decades of legal precedent and existing civil rights, it means that people with disabilities may be forced into institutions, instead of being provided with services that allow them to thrive in their communities,” Town said.
Mendel said that was highly unlikely.
“It’s a scare tactic,” he said. “It really frustrates me because, as I said, Together for Choice has been advocating for a broader interpretation of home- and community-based services and for making sure that places like intermediate care facilities continue to exist for those who want them and need them.”
Intermediate care facilities are state-run housing options that provide specialized services for people with intellectual disabilities.
Mendel’s own daughter is thriving in a state-run housing facility, even though many disability advocates believe people with disabilities thrive best in smaller, community-based settings, such as group homes.
Mendel has tried speaking with those advocates about the need to provide diverse housing options for people with disabilities, since group homes don’t work well for everyone.
In his view, people with disabilities and their families should have the choice of what works best for them, be it a campus setting, a farm or group home.
“Every time we make our arguments, the response is, ‘Oh, we’re going back to Willowbrook.’ It’s ridiculous,” he said.
Willowbrook was a New York state-run school in Staten Island in the mid-1900s that housed youth with intellectual disabilities.
In 1972, Geraldo Rivera exposed how Willowbrook residents were neglected and abused. The investigative report led to national outcry and new federal laws to protect the rights of people with disabilities.
Mendel acknowledged that Willowbrook was horrific. “Nobody wants to go back to that,” he said.
People with profound autism need diverse housing options
Since the Willowbrook exposé, the pendulum has swung too far in the other direction, Mendel said.
For many people with disabilities, the small home or community-based setting is great. He estimated that about 90% of adults with disabilities live in that setting, such as a group home located in a regular neighborhood.
“But I’m very concerned about the other 10%,” he said, “because — my daughter included — that 10% still needs and wants a different kind of care.”
For example, some adults with profound autism thrive on farmsteads where they can live with others with autism.
“I just want to make sure those kinds of settings are available for the folks that need them. This does not take us back to Willowbrook,” Mendel said.
The idea that all large, congregate settings are bad and all small, community-based settings are good is an unhelpful oversimplification. What’s important is the quality of the setting, Mendel said.
And since there’s great diversity among people with disabilities, “you need a wide variety of different settings so that people can choose what works best for them,” he said.
“Sometimes that’s a larger setting, sometimes it’s a campus setting or a farmstead or an intentional community. And sometimes it is a small setting, and all of those should be available.”
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So what did the DOJ opinion actually say?
According to Mendel, the “real importance” of the DOJ opinion is that it affirmed that federal disability law and a related key U.S. Supreme Court ruling do not contain what’s called an integration mandate.
According to the Americans with Disabilities Act (ADA) website, the integration mandate is a regulation in the ADA that bans the unnecessary segregation of people with disabilities.
In its opinion, the DOJ looked at whether the integration mandate was actually part of federal law and jurisprudence, or whether laws and court decisions had just been interpreted as including an integration mandate.
The White House asked the DOJ to answer three questions:
- Did the landmark disabilities Supreme Court decision in Olmstead conclusively decide that Section 504 of the Rehabilitation Act and Title II of the ADA impose, or authorize the imposition of, the integration mandate?
- Could Congress impose an integration mandate?
- Did Congress impose an integration mandate?
The DOJ concluded that Olmstead did not conclusively decide that the Rehabilitation Act and the ADA imposed, or authorized agencies to impose, an integration mandate. The DOJ also concluded that Congress had not statutorily imposed an integration mandate.
The DOJ did not resolve the question of whether Congress could constitutionally impose an integration mandate.
Together for Choice agreed with the DOJ. The group said in a statement:
“We have consistently advocated that Olmstead and the ADA are first and foremost about choice. Properly read, neither Olmstead nor the ADA mandate that every individual with an intellectual disability live in a small group home or in their own home. Such a ‘one-size-fits-all’ solution is bad law and bad policy.”
Mendel said he thinks the DOJ opinion “helps us move in this direction, that whether a setting is good or bad is not related to its size.”
“It’s not related to how many people it serves. It has to do with the quality of the setting,” said.
On July 20, the DOJ’s Civil Rights Division published a clarification on the opinion in the Federal Register, saying that it plans to revisit Olmstead in light of a more recent Supreme Court ruling.
The Civil Rights Division also clarified that some of the guidance issued in past years by the DOJ about enforcing the integration mandate is no longer enforceable since the integration mandate does not exist.
Related articles in The Defender
- ‘What Happens to My Child When I Die?’ The Crisis Facing Parents of Adults With Autism
- RFK Jr.’s New Autism Advisers Set Sights on ‘Many Unanswered Questions’
- ‘Autism Tsunami’: Society’s Cost to Care for Expanding, Aging Autism Population Will Hit $5.54 Trillion by 2060
- Who Will Care for Adults With Autism When Their Parents No Longer Can?
