by Eric Garcia
This fight even includes which types of settings can be considered “home- and community-based” when it comes to HCBS. In 2014, the Centers for Medicare and Medicaid Services released what was called the “settings rule,” which was meant to determine which types of settings states could use Medicaid dollars to pay for HCBS, as well as define and describe the requirements for home- and community-based settings. The goal was to ensure that people with disabilities and seniors who received HCBS were truly integrated into the community. In addition, CMS also released a guidance document that outlined four types of group settings that have the effect of isolating individuals who receive HCBS waivers from their broader community:
Farmsteads, or residential farms: Sending developmentally disabled people to rural areas and farms dates back to the 1850s, when the policy was to “protect” them. But the current incarnation can be traced to the creation of Bittersweet Farms, which was established in 1983 near Toledo, Ohio. Bernard Rimland even said in a blurb of a book examining Bittersweet that the format could be a future setting for his own son Mark. But many advocates see them as a form of segregation because they are run without the input of disabled people. Autistic self-advocate Kit Mead wrote in 2016 that they were akin to the colony model of institutions for developmentally disabled people during the late nineteenth and early twentieth centuries. “Often these farm arrangements are custodial, and fail to move people out of the isolated setting into the community with real jobs that pay real wages, not piecemeal subminimum wages,” they wrote.
Gated or secured community for people with disabilities: Defined as consisting “primarily of people with disabilities and the staff that work with them.” The reason these places were considered isolating was that people who received services there did not leave the community to interact with the broader community, thus sequestering them.
Residential schools: Facilities that provide education and residence. In 2012, the New York Times covered the draft of a report that said that residential schools run by New York’s Department of Education did not track abuse claims. The investigative news website ProPublica also reported in 2015 on residential schools’ use of restraints and how alternative methods were largely self-imposed, rather than mandated.
Settings that are located near each other and are operated and controlled by the same group: These included places like group homes and intermediate-care facilities, which provide long-term care for disabled people. It also included group homes that are on the same site or close to each other. The guidance said that the shared programming and staff limited residents’ ability to interact with the larger community.
Bascom said the settings rule came about because far too often, people with disabilities were put on waiting lists, which meant they would waive their right to institutional care while also going years without services they needed.
“They finally get their alleged HCBS, and it would be indistinguishable from an institution. A group home would have the same rules,” she said.
Incidentally, some parent advocates support the use of HCBS waivers to be used toward more institutional-style living like the options just explored. One such parent is Amy Lutz, who would later help start the National Council on Severe Autism and who has an autistic son named Jonah. In an op-ed for Spectrum News, Lutz went after the American Civil Liberties Union for siding against these congregate settings and said it showed “a troubling display of paternalism.” She even compared the ACLU to the doctors who founded the first institutions in the nineteenth century; they “believed they knew what was best for people with disabilities too,” she wrote.
“Some adults with disabilities and their families are attracted to large, disability-specific communities because of their social benefits. But others—like Jonah—need this option, as they require more support than can be safely and consistently delivered in dispersed settings,” Lutz wrote. She added that one of her fears was that when she and her husband were no longer able to care for Jonah, he would end up in his own apartment with an aide who wasn’t adequately paid and thus didn’t properly care for him.
Similarly, in 2016, Paul Solotaroff, the father of an autistic young man, expressed his frustration with the rule in a longform piece in Rolling Stone, which said CMS’s rule “launched a strike on intentional communities,” a term many supporters of these types of settings use. It also quoted Jill Escher, who was then president of the Autism Society San Francisco Bay Area (and who would later become a founding member of NCSA), who accused Medicaid of making the rule to cut financial costs. “They took a look at their budget costs and said, ‘To hell with them. Let’s cut their spending now.’” Solotaroff envisioned his son, who was seventeen at the time, being able to move to a farm in Massachusetts that had gotten around the final rule by not having residents live in group homes but rather share homes with provider families.
Public policy has also begun to move in favor of parent advocates like Lutz and Solotaroff. In 2017, CMS under the Trump administration gave states until 2022 to show they are complying with the new rule when they were initially meant to comply in 2019. In 2020, CMS again extended the compliance deadline until March 17, 2023, amid the coronavirus pandemic.
Then in 2019, CMS released new guidance on the settings rule. While it kept the rule in place, it changed the criteria—which it claimed it streamlined—for settings that isolate and removed the list of specific settings that isolate. Most notably, it also said, “Settings located in rural areas are not automatically presumed to have qualities of an institution, and more specifically, are not considered by CMS as automatically isolating to HCBS beneficiaries.” In turn, if states determine that gated communities and farmsteads met the criteria for a home- and community-based setting, they could be eligible for Medicaid HCBS funding. The new guidelines said that states should only submit a specific setting to CMS for scrutiny if it had qualities akin to institutions. Director Seema Verma called the previous guidance “too prescriptive” and said it “unfairly singled out certain settings,” which Verma said worried beneficiaries, families, and providers. Still, the new guidance kept the settings rule in place.
“Even well-intentioned policies from Washington often lack the flexibility needed to work for every state, community, setting, or family,” CMS director Seema Verma said at the time in a press release. “We believe our revised guidance strikes the appropriate balance to protect individual choice while maintaining the integrity of home- and community-based funding.”
NCSA and other groups hailed the clarification, calling it a victory for “choice.” Not surprisingly, many autistic people and self-advocates did not hail it, though they were relieved the settings rule stayed in place. There is an understandable impulse behind these anxieties and fears. These parents do want what’s best for their kids and worry about what happens when they are no longer capable of caring for them. They might see the original restrictions against those settings as compromising their sense of security.
Similarly, Alison Singer, who is treasurer of the NCSA and the president of the Autism Science Foundation, told the Interagency Autism Coordinating Committee that intentional autistic living communities—which supporters describe as supervised housing for developmentally disabled autistic people with support staff and programming—are nothing like the institutions of old. (Singer, some readers might remember, was the spokesman from Autism Speaks who left amid the imbroglio about vaccines.) Lutz also quoted David Mandell, the professor at Penn who surveyed a state hospital (and who has coauthored many of the studies in this chapter), who told her that there is no data proving that living in apartments is safer than living in an intentional community.
But Julia Bascom disagrees. Many of these places are essentially neo-institutions that are “shot-for-shot recreations of the first institutions,” she said.
“I think if someone thinks an intentional community is so great, they should go live in one. But it’s usually not the disabled people asking for them,” Bascom told me. Basco
m’s colleague Sam Crane has also said that they are still isolating because they are “designed so that people have no need to leave the campus on a daily basis except on group trips.”
Bascom said she understands the desire of parents to make sure that their kids are protected, which leads to the desire to build a place for children to be kept safe. “But the reality is the thing that’s going to keep him safe is those relationships with other people.”
Similarly, Montgomery says it is easy to give the illusion of choice in an institution, but self-determination is the most important aspect.
“One of the things that I learned when I worked in group homes is how incredibly easy it is to create an environment that looks like it is all full of choice and happiness and whatever,” he said, when in reality it’s the people who work there who are in full control.
Montgomery’s priority for any type of living situation is independence. But the problem is that any time there is a new system put in place for people with developmental disabilities, “the same old people are working it,” and those same people will just take over and take control like they did in the past. Instead, Montgomery said, there needs to be a focus on finding what best promotes self-determination. “But I don’t think that’s gonna just do it. I think if we got everybody into, what is now considered HCBS, I think for most people in the system, they’d still be institutionalized,” he said. “There’d be smaller places, it’d be places that are easier to address. And that are in many ways better, in most cases, but I don’t think it solves it. So, I’m still struggling with what we do.”
Montgomery said the places would be smaller and probably better, but it wouldn’t solve the problem of lacking autonomy and independence or being free of the restrictions of institutions. Often, he said, people who were institutionalized were moved presumably “to the community” but were given “wholly inadequate services.” Similarly, people who live in big developmental centers are often “in the community,” but their services are still restrictive and coercive in nature. In other words, whenever a new solution is created for intellectually and developmentally disabled people, including autistic people, the same old problems plague them.
Some states have additional services to assist autistic and developmentally disabled people outside of institutions. For example, the Rosa family’s insurance covers in-home services. California’s regional centers also fund respite for people like Leo. The regional centers fund 80 percent of Leo’s camp in a location called Via West in Silicon Valley, and the people have one-on-one or one-on-three support for the entirety of the camp. But the Rosas are lucky they live in California, because how good the services autistic people receive can be entirely contingent on the state where they live.
“I Am the One Thing in Life I Can Control”
The debate between some parent advocates and self-advocates it not limited to where autistic people live but also how they live, particularly on the question of guardianship. While American guardianship in its current incarnation can trace its ancestry back to late fourteenth-century British common law, many disability rights activists and promoters of independence argue that it limits disabled people’s independence. One of the defining traits of independence as American and Western liberalism defines it is the right to have options and decisions. But many advocates object to guardianship because it means that someone else can control their finances, where they choose to come and go, whether they can vote, and even whether they can get married.
In response, many states have adopted supported decision-making as an alternative to guardianship. In guardianship, disabled people often have little control over their lives without the consent of their guardian. Supported decision-making allows people to make their own decisions about their health care, residence, and finances but with the assistance of people they designate as their supporters. Still, at the end of the day, it is disabled people who have the final say.
“Guardianship involves substituted decision-making and the right of the person to make decisions is voided,” said Michael Kendrick, who is the director for Supported Decision-Making Initiatives at the Center for Public Representation, a disability rights advocacy organization. “At least in a legal sense, [disabled people] lose their rights. Whereas in supported decision-making, they preserve their rights in their entirety. And in addition, they get assistance with their decision-making.”
Furthermore, there seems to be bipartisan consensus on supported decision-making. The first two states to pass legislation for supported decision-making were deeply Republican Texas in 2015 followed by Delaware, an overwhelmingly Democratic state, in 2016. Other states that have laws on their books include Indiana, Nevada, Alaska, Wisconsin, North Dakota, and Rhode Island, along with the District of Columbia. Georgia and Massachusetts have both conducted pilot programs, and other states, like California, offer it without a formally enshrined statute. ASAN’s Samantha Crane helped with the Texas legislation, Bascom said.
“We’re talking about fundamental things like life, liberty, and the pursuit of happiness and your ability to be in charge of your life,” Bascom said. “So, sometimes in blue states, you see more resistance because people are more used to this mindset of ‘We have to take care of people,’ and care means control for a lot of people.”
Anna Krieger, a lawyer with the center who helped people set up their agreements in Massachusetts, notes that while Maine did not have a comprehensive piece of legislation, it did something equally important—it inserted into its guardianship a statute that supported decision-making had to be considered first.
“They weren’t able to get that bigger bill passed, but they were able to get that key piece of information in,” she told me. “So, with that as the foundation, I think that will help them move towards supported decision-making as the default option and then guardianship as the second choice.”
But Crane notes that while supported decision-making is good on a state-by-state level, it must be accompanied by Congress passing federal legislation, such as reauthorizing Money Follows the Person, which provides financial assistance for people to leave nursing homes and was first signed by President George W. Bush. But since its funding lapsed, it has regularly received only short-term extensions, which has caused a drop in people transitioning out of institutions.
“If you don’t have funding available to you, then you have no meaningful options to choose among. But once you do have those options, [supported decision-making] is really helpful,” Crane told me, noting that community integration means allowing people to set their own daily routines and schedules, which supported decision-making can make a reality. “Whereas a person under guardianship may not be able to make their own choices about where to live, how to spend their discretionary income, or who to form relationships with—making community integration much more difficult.”
At the core of so many of these debates about autism and independent living is the capacity for autistic people to make their own choices and have their own sense of autonomy within their communities, regardless of what that looks like.
I have a semi-autonomous life. Even though I rent a room in another person’s home, I can come and go as I please; I don’t have people setting hard hours or curfews for me. I can go out when I want and stay a little late with friends if I so desire; I can stay home and sleep in as long as I want on the weekends. Nobody forces me to go to work or come home at a certain hour, and I get to buy my own groceries.
Living independently took trial and error. In the weeks before I left to go intern at the White House, my mom taught me how to clean a bathroom and do laundry. When I arrived in DC as a White House intern, my dad helped me find the nearest grocery store, which turned out to be a bodega. Given Washington’s sweltering humid summers, I needed to live near a Metro station and a store to get food. My mom insisted I get a cleaning person to clean my quarters once or twice a month, and I realized life could be easier if I had groceries delivered to my place.
I doubt
in this phase of my life that I would be ready or even capable to move out on my own and handle all executive-functioning responsibilities that come with living alone. And that is okay. I doubt I would have my career if I needed to constantly tend to home-care issues. In the past, I used to hate when people prodded me to get more assistance because I felt like they were telling me how to live my life. Nowadays, I recognize that the support systems I do have in place, like my cleaning person, are essential for me to continue living my life.
Some may say that I am freer than Bascom because I do not need a support person. But in the same way that a wheelchair is not something that binds a person who cannot walk but rather gives them mobility, or how the glasses Callahan wears allow him to see, having a support worker actually gives Bascom freedom rather than limits it.
This isn’t to say that all of my decisions have been correct. God knows I do not always eat the healthy option (after a long day at work and especially after writing, it is so easy to get takeout instead of cooking. And the Chinese food carry-out is literally across the street). In my independence, I have spent money frivolously on things I don’t need. I’ve trusted people I shouldn’t have. I once went a whole three months wearing the same undershirt beneath my dress shirt because I didn’t realize you needed to constantly wash them. One time when I got back the wrong shirt from the dry cleaner’s, I didn’t return it for months, even though I knew I needed to. I wanted to, but it just felt so impossible to do and the task kept falling by the wayside.
You may be thinking, But this is all part of adulthood; being human means you will inevitably screw up. But while yes, the right to grow up also includes the right to screw up, only able-bodied people have this luxury. For autistic and other disabled people, every bad decision becomes a referendum on your right to live independently. Despite jokes about “adulting,” nobody is going to force my neurotypical friends to move back in with their parents if they forget to do their laundry. If they need a nanny to care for their kids, a maid to clean their house, or a gig worker to do daily tasks, they won’t be seen as incomplete humans. Autistic people’s use of these services is no more of a measure of their incompleteness as humans than people who use wheelchairs are failures because they cannot walk.