by Eric Garcia
These days, there is a divide between some parents and self-advocates over what the best environment for autistic people is. Many parents of autistic people with higher support needs have argued that their children need environments that are more restrictive—places that some self-advocates would deem institutions but that these parents believe can ensure their children’s well-being and security.
Conversely, many autistic self-advocates see being a part of a community—whether it is living with friends, parents, a home-care worker, a roommate, or simply by oneself—as being part of the social fabric. It means our fate and our health are tied to others and we can’t be relegated to seclusion.
Life Beyond Institutions
When we spoke over video, Leo Rosa seemed to be a generally happy person, and he greeted me when his mom asked him to say hello. He has a good life with a strong support system, which is crucial, since, as Shannon told me, he can’t do anything independently.
“He has to have somebody with him in the house, because he doesn’t know how to prepare his own meals, although he can do part of it,” she said. On top of this, Leo can’t drive, and if he went into the street, he would not necessarily know to stay away from passing cars. Leo can also be very dysregulated, which means he has difficulty modulating emotional responses. Shannon said that right before I called, he was having a meltdown because his schedule had been disrupted.
“He had a hard time waiting [for lunch], and I could see that if somebody didn’t understand autism and autistic regulation and how easily a person can become dysregulated, that they might think that this was an awful thing,” she said. “But I’m like, ‘Well, you give him his lunch and let him process, and then he’ll be al’ right.’”
While Shannon is explicit about Leo’s difficulties, she doesn’t make herself out to be a victim (an all-too-common refrain in parents of autistic children). Rather, she is empathetic and knows none of this makes Leo any less human. He may have higher support needs than some other people, but they do not diminish his worthiness. Leo deserves all the respect and dignity Shannon’s other children have, and understanding these needs allows the Rosas to know how to best assist Leo and themselves. As I heard Shannon speak, I was struck by the similarities between Leo’s needs and Bascom’s.
By her own account, Bascom has what she calls “normal, boring autism” and characterizes her support needs as “very middle of the road,” since she acknowledges every autistic person needs some support, but some need very little. “There are people who need a lot more support, people who need twenty-four/seven, one-on-one support or even more than that,” she said. “And then there are also a lot of autistic people who need less support than I do, who need support but can still live by themselves.”
What Bascom means when she says she falls somewhere between the two is that she doesn’t necessarily need someone tending to her constantly, but at the same time, she does need help navigating her daily tasks.
A native of New Hampshire, Bascom said when she first moved to DC she nearly died because of a lack of support. “I was only on my own for a couple of months, but I got very, very sick,” she said. “Independent living in college was not something I would be able to do.” Fortunately, Bascom had been speaking with Colton Callahan online, and he was already getting ready to move to Washington.
“I was looking to move to a city,” he said. “Julia was looking for a roommate–slash–support person.” Callahan’s help is more a cumulative effect rather than assistance with one situation.
“Any one thing I’m helping her with, it’s not the task itself that I need to help her with. It’s all the little things that go into it,” Callahan told me. For example, when Bascom is traveling, Callahan often prompts her to make sure she is eating and handling the sensory-processing issues that come with being in a large crowd. “It’s not that traveling is a thing she needs help with so much as traveling has a bunch of little things that she needs a little bit of help or prompting with.”
But even on a normal day, Bascom says she does not have the capacity to both hold a job and prepare meals for herself. “In theory, if I didn’t have a job and everything else in my life was really easy, I could probably prepare two very simple meals for myself, like a sandwich and then something I heat up in the microwave,” Bascom said. “That would take the whole day. And I can’t do that. That’s not a way to live a life. And I definitely can’t do that if I’m working.” As a result, when Bascom’s workday is done, it’s Callahan’s responsibility to prompt her to do basic executive-functioning tasks, like showering or making dinner, which are especially difficult for Bascom at night.
“At the end of the day, I get stuck a lot,” Bascom said, which she says is a reason she needs a support person. “You want to do something, but you can’t make your body move.”
To neurotypical people, this might just sound like typical end-of-the-day exhaustion when you don’t want to cook and decide to order takeout instead. But as an autistic person, I know exactly what kind of sensation Bascom is discussing because I feel it as well. You literally are unable to move because you have spent your entire energy reserves trying to interact with people all day. It’s the equivalent of running miles in a weighted bulletproof vest. Afterward, you have no more physical force to exert. It’s why, as of right now, I don’t live completely independently; I rent a room in a house in Washington that came furnished, and I hire a cleaning person to clean it once a month. There is no way I could have the executive-functioning capacity to do those tasks on top of everything else in my life.
Bascom and Callahan use a model for living called Shared Living, which is essentially where “an individual, a couple or a family in the community and a person with a disability choose to live together and share life’s experiences,” according to a brief prepared by the Arizona Developmental Disabilities Council for the National Association of State Directors of Developmental Disabilities Services. The intention behind these projects is to ensure disabled people “experience real community life,” rather than one that is controlled by an outside body.
It is not entirely clear how many people use these types of arrangements. A 2020 report from the University of Minnesota’s Residential Information Systems Project, which tracks the long-term services and supports that people with developmental disabilities receive, found that 5 percent of people with intellectual or developmental disabilities live in “host” or “foster family” homes, which has some overlap with shared living. However, it includes only those shared-living settings wherein the nondisabled person leases or owns the home. In addition, many shared-living arrangements like Bascom’s and Callahan’s are conducted outside the context of Medicaid, which means they aren’t tracked.
Shared living allows autistic people to live fulfilling lives and not have to be overwhelmed by complex tasks. Bascom can go to Whole Foods, get a scone, and come back. But grocery shopping is not something she can do. Callahan told me that she will tell him that the employees at the grocery store will let her leave if she has a full cart. “And she’s made that connection in her head. So, she’ll just start putting things in the cart that we don’t need, that we don’t want. She just puts them in there, and then she’ll buy them, and then she’ll come home. And I was like, ‘Why did you do this? Why would you do that?’ And she was like, ‘Because they let me leave if I do this.’” I completely understood what Callahan meant. Much of the world’s rules are not explicitly written; people move through the world through general understanding and what they deem common sense. But if there aren’t well-articulated rules to explain things, autistic people often have to work by mimicking others.
As a solution, Callahan goes grocery shopping for the both of them because he likes it, and this way Bascom does not need to be overwhelmed by interruptions to her daily routines. Callahan also keeps small problems from becoming big problems for Bascom even if he’s not doing anything, as was the case when she needed to get her disabled-person Metro card renewed. C
allahan went with her so she could find the right place.
“And it went perfectly smoothly. I went and I got my disabled card,” Bascom said. Callahan said people might wonder why he went when he didn’t do anything, but he explained that his presence alone can make a difference for Bascom. Without him, she likely would run into those small problems, like finding the door or knowing what to say to the front-desk person. Being able to navigate all of those small things allows her to accomplish the tasks with ease.
“I was there because we talked it out beforehand. We made a plan for where we’re going and what we’re doing,” he said. “I was there in case things went wrong. But it’s her errand, it’s her life. So, she did it. I was there in case [I was] needed. And me being there was still integral. I was still necessary to the process.”
I’m one of those autistic people who doesn’t need daily support. I do not require a live-in support person, like Bascom, or need around-the-clock care, like Leo Rosa. Plenty of people have told me that they didn’t realize I was autistic until I disclosed (those that know about autism usually guess, though), and that is probably because of the fact I live on my own. I pay my bills on time and ensure I am being a good neighbor. I don’t have a home-care aide or my parents nearby. I don’t require an around-the-clock aide or even a part-time aide. But this just means I have developed executive-functioning skills. That doesn’t make me any less autistic than Bascom or Rosa, but it does mean that a lot of times, my capacity for competence is not called into question the same way Bascom or Leo Rosa’s is.
“Just Set Me Free”
Despite the movement away from institutionalization and toward more community-based living arrangements like Julia Bascom’s and Leo Rosa’s, many autistic people still rely on some sort of government assistance when it comes to housing.
The major shift toward government-subsidized community living began in 1981 when Congress enacted 1915(c) of the Social Security Act, which effectively created Medicaid Home- and Community-Based Services (HCBS) waivers. These HCBS waivers were meant to provide services like in-home personal care and case management to elderly people as well as people with mental, physical, and intellectual disabilities as an alternative to institutionalization. In fact, the reason they are called waivers is that they allow states to “waive” the medical-assistance rules that govern institutional care to allow people to live in the community instead.
Despite the passage of this progressive-seeming legislation, initially, many people were slow to take advantage of this new service. However, two policy changes in the 1990s finally expedited the shift. First, the Americans with Disabilities Act “instructed states to move to avoid the needless institutionalization of disabled people,” as Pitney explained, cementing the idea that there are other, preferable living arrangements for that population.
Second, in 1999, Lois Curtis and Elaine Wilson, two developmentally disabled women with mental illness, filed a lawsuit when they were not transferred from the psychiatric unit of state-run Georgia Regional Hospital to a community setting. The Supreme Court ruled in Olmstead v. L.C. that unjustified segregation of people with disabilities violated Title II of the ADA and said that public entities must provide community-based services for people with disabilities when appropriate. This essentially meant that segregation of people with disabilities was now a form of discrimination and therefore was against the law.
“First, institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life,” Justice Ruth Bader Ginsburg wrote in her opinion for the Court. “Second, confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”
These concurring policy moves led to a seismic shift toward community living. As Pitney wrote, in 1995, HCBS waivers accounted for only 30 percent of Medicaid’s long-term support for people with developmental disabilities, but in 2012, 70 percent of spending went to HCBS waivers while only 30 percent went to institutions.
While a boon for the disabled community en masse, one problem is that HCBS waivers were not made with autistic people in mind. (Remember, autism did not appear in the DSM as a diagnosis separate from schizophrenia until 1980, the year before the creation of the waivers.)
As Julia Bascom explained, “They’re based off of people with intellectual disabilities or people with physical disabilities.” Often, this means that people without intellectual disabilities are ineligible for the waiver. (For instance, Bascom does not have a Medicaid waiver; she arranged her setup with Callahan between the two of them.) “And that means that people don’t get the services that they need. Not everybody is lucky enough to have a friend who is willing to do this for many hours,” she added.
In this same vein, autistic people’s housing needs might vary more than the needs of people with other types of disabilities. For instance, some autistic people might not be able to handle fluorescent lights or would not be able to live near an airport because the noise could cause sensory overload, as Cal Montgomery said. On top of that, many autistic people do not drive, so they need to reside near public transportation. (That one I relate to; I tried learning how to drive multiple times when I was a teenager, and it was too much for me to process sensory-wise. It’s a big reason I live in a metropolis with somewhat reliable public transportation.)
But states also have the capacity to cap HCBS waivers, which can create waitlists. One news report from 2017 found that Hamilton County, Ohio, where Cincinnati is located, had a backlog of 3,791 people, a 50 percent spike from four years before then. In 2019, New Mexico’s backlog for its Developmental Disabilities Waiver Program was five thousand individuals over a six-year period and people waited roughly thirteen years to get services. A report from the Kaiser Family Foundation in 2019 found that in 2017, there were more than 707,000 people on waiting lists in forty-eight states. This backlog creates another dilemma for the autistic and otherwise disabled people: Should they risk entering an institution or risk a waitlist for a waiver with little to no support in the meantime in hopes that the queue eventually clears up?
Still, despite the HCBS waivers’ imperfections, there is evidence that they do overwhelmingly benefit autistic people. Since waivers are administered by state programs, they can vary wildly. One study published in Health Services Research in 2019 found that a generous waiver program significantly increased the odds that black autistic kids would have their needs met, with Maryland, North Dakota, Arkansas, Montana, Utah, South Carolina, Massachusetts, and Missouri having the most generous waivers.
A 2018 study from the Journal of Applied Research for Intellectual Disabilities found that families said that home- and community-based services autism waivers improved their overall family quality of life. Another 2018 report from Medical Care found that HCBS waivers were associated with reducing the number of unmet needs in autistic children, and more generous waivers were associated with fewer unmet needs. Incidentally, one aspect of the study was that the waivers appeared to disproportionately benefit children from higher-income families because autistic children from lower-income families already qualified for Medicaid, which tends to be more generous regarding autism than private insurance. Some may see this as a regressive policy, but this is a net positive both policy-wise and politically—children of wealthy people deserve to have adequate supports and services in their community as much as poor autistic children do, but more than that, wealthy people seeing the benefits of the program might be inclined to support the program and even improve on it.
In addition to better serving the disabled community, HCBS waivers can help save the government money. The National Council on Disability found that the average annual state expenditure for someone in an institution was $188,318; compare that to $42,486 for Medicaid HCBS. However, despit
e this financial reality and the decades-old ADA legislation supporting community living, government services are still biased toward institutions.
“Even when a person is on an [HCBS] Medicaid waiver, there are financial incentives to use group homes instead of supporting a person in their own home,” Samantha Crane at ASAN said. Medicaid specifically prohibits paying for room and board for settings like apartments but does pay for them for facilities like hospitals and nursing homes. As Crane explained: “Technically the group home is supposed to separately bill for room and board, but because they are bundling that with other services they often can charge lower room and board fees than the average rent on an apartment.”
In addition, as another report from the Kaiser Family Foundation said in 2013, states are required to cover benefits for nursing care, but most HCBS coverage is optional. And how states spend their money varies widely; in 2013, states spent anywhere between 21 to 78 percent of the money for Medicaid Long-Term Services and Supports on HCBS.
Crane added that there are also cultural attitudes that perpetuate the use of HCBS waivers to cover institutions: “Because group homes and institutions serve multiple people at once, they’re seen as ‘known quantities’ to guardians and case managers, which means that it’s often seen as easier to find a person a group home or institutional placement than it is to figure out the individualized services and supports that they may need in order to live in their own home.”
“Your Sons and Your Daughters Are Beyond Your Command”
But HCBS, like everything in autism advocacy, has become a battleground between autistic self-advocates and their supporters versus (largely) parent advocates and their supporters, the latter of whom want what they believe is the safest possible option for their children. Many parents of autistic children also want to keep autistic people in some sort of isolated or segregated setting.