For the roughly 681,000 Americans with intellectual and developmental disabilities who reside in congregate care settings such as group homes and state institutions, the coronavirus pandemic has wrought a tragic, and largely invisible, crisis.
An estimated 13% of adults with IDD rely on these congregate settings for full-time support, with aid ranging from medical services to personal care. Yet close quarters, shared use of essential living spaces, and frequent shift changes of part-time staff have turned these facilities into ideal breeding grounds for the virus.
A recent study led by Scott Landes, an associate professor of sociology at Syracuse University, found that the case rate for people living in New York’s residential group homes was disproportionately high. In those homes, there were 7,841 cases per 100,000 people, compared to 1,910 per 100,000 for the general New York population. And these high levels of infection are further compounded by the fact that people with IDD face high prevalence of co-occurring conditions – including hypertension, heart disease, respiratory disease, and diabetes – which put them at elevated risk of poor outcomes from COVID-19. Indeed, Landes’ study showed that case-fatality was 15% among people with IDD, compared to 7.9% among the state’s general population.
The fatality statistics reported for people with IDD in congregate settings are even higher than those reported for Black Americans, Landes explained, which are already exposing some of the nation’s worst inequities. “If you look at those mortality rates that we report, those are worse than any that I’ve seen from any minority in this country,” Landes told the HPR. “That just makes the point.”
The struggle to contain the outbreak within these facilities has yielded disaster scenarios of unsettling proportions. In one Illinois institution for adults with developmental disabilities, over 310 out of the 344 residents tested positive for coronavirus – an outbreak so severe that the National Guard was called in to respond. Across Massachusetts, Maryland, Texas, New Jersey, and other states, residential centers have found themselves similarly overwhelmed by escalating case numbers.
Despite these alarming infection rates, it is perhaps unsurprising that the plight of this population has received little to no public attention. While, in mid-April, the Centers of Medicare and Medicaid Services implemented a requirement that all nursing homes report their COVID-19 cases, it has yet to require the same reporting from congregate settings for individuals with IDD –– despite ongoing calls for data transparency from disability advocates. Given that public health policies and emergency response efforts are data-driven, the lack of data surveillance inside these facilities may leave the needs of the IDD population unseen and ignored.
“Frankly, the government not requiring [data transparency] for settings where people with disabilities live is, whether it’s intentional or not, making it seem like people with disabilities don’t matter,” said Nicole Jorwic, senior director of public policy at The Arc, a nonprofit organization that promotes the human rights and inclusion of individuals with IDD.
In the midst of this crisis, disability advocates have organized passionate calls for reform to disability housing policy. At the core of their requests is a push for moving people with disabilities out of institutional settings and into homes in the community. While sparked by the recent outbreak, these calls are anything but new. According to Jorwic, the pandemic has merely spotlighted the same issues of institutionalized living that disability advocates have been “screaming and yelling about for decades.” Such issues, alongside public health concerns, also include a lack of autonomy and lessened quality of life.
In this manner, the pandemic’s toll on congregate care settings represents a crisis decades in the making. However, in mobilizing political willpower, the urgency of the moment may also open up a rare opportunity for tangible, legislative change.
‘An Uphill Battle’
Just over half a century ago, to have an intellectual or developmental disability was to be deemed an “imbecile” and a “menace to society,” and to be confined to a life inside one of the many large public or private institutions across the nation. It took a surge of media exposés, alongside dozens of lawsuits, to unveil the inhumane conditions and civil rights abuses that took place inside these institutional settings.
In the 1970s, the tides began to turn with a wave of deinstitutionalization and the birth of the independent living movement. New restrictions and legislation were passed to prevent the same abuses of the past from ever repeating themselves.
In a 1999 landmark Supreme Court case, Olmstead v. L.C., the court ruled that the unjustified segregation and isolation of individuals with disabilities was discriminatory – a triumphant affirmation of the rights of people with IDD to live and fully participate in the community.
Still, two decades after the Olmstead ruling, this right to community living has yet to become a reality. Its full realization remains impeded by structural, attitudinal, and financial barriers.
Many Americans with IDD continue to live in segregated living environments, such as Medicaid-funded Intermediate Care Facilities, which oftentimes house up to hundreds of residents in one space. Others reside in group homes, although these are usually smaller, with eight or fewer residents. Additionally, state-run institutions are still operational in 37 states. While some individuals with IDD may prefer to reside in these congregate settings, others do so simply because there is no other option available: Approximately 4.8 million Americans with disabilities who are supported by Supplemental Security Income earn an average of only $9,156 per year, which prices them out of every single rental housing market in the country, according to The Arc’s website.
Moreover, due to a longstanding institutional bias, federal Medicaid law deems state funding for community-based services optional, while it requires that states fund institutional services. In particular, Medicaid only guarantees coverage for Intermediate Care Facilities, which provide large facility-based care. Those with special Medicaid waivers may also receive coverage for care in other settings, including group homes and independent housing. However, these waivers are limited and some states only offer 2000 or 3000 total waiver slots for people with IDD – resulting in waiting lists that span 10 to 20 years. Housing unaffordability, combined with minimal funding flexibility, shuttles individuals with IDD into institutional settings and closes the gate on other community-based living options.
To make matters worse, due to low compensation, direct support professionals with adequate skills are few and far between. Retention rates are low, with many leaving to find higher paying jobs. Thus, while many people with IDD rely on the support of caretakers to enable them to live in their own homes, there has long been a deficit of service providers who offer in-home support.
“It’s a bit of an uphill battle for a lot of people to get individualized support in their own home, and also access the housing supports to get into that home. So, people end up in group settings.” Samantha Crane, director of public policy at the Autistic Self-Advocacy Network, told the HPR.
And yet, advocates emphasize that the continued push for independent living and to integrate people with IDD into the community is essential to improving quality of life. They maintain that congregate settings impose restrictions on the autonomy of their residents: People with IDD living in group homes or institutions are much more likely to face policies such as curfews, restrictions on visitors, set mealtimes, inability to make flexible plans, and inability to pursue hobbies and interests outside of structured group programming.
“The staff are working for the group home and not for you as an individual, and the staff tend to therefore see their job as making the home function, rather than maximizing your specific access to the community,” Crane said.
And, as the coronavirus pandemic has highlighted so starkly, the group-oriented environment of such settings makes them particularly vulnerable to any public health emergency. Just two years ago, for instance, an outbreak of adenovirus –– a common virus producing cold-like symptoms –– in the Wanaque Center in New Jersey hit the center’s pediatric ventilator unit, killing 11 children and sickening 25 more. These tragic losses did not start with the coronavirus pandemic and are unlikely to end with it.
“In a time of looming budget cuts, the real fear that I have is that the states cut their budgets even more,” Dr. Landes said. “They have to put more people in every home and we just have many more institutions which –– next wave, next pandemic, it would be horrible.”
‘An Opportunity to Restructure’
It wasn’t until mid-June that — amid outcry about the delay — the Trump administration finally released a billion dollar aid package directed towards providers serving individuals covered by Medicaid. With little government support and due to a lack of resources, providers were stretched to their limits. Many staff members of residential group homes launched their own PPE drives and worked longer shifts with minimal compensation.
“Initially our direct support staff were not considered essential workers and that was just crazy. They are absolutely essential. Absolutely front line. And they were working with COVID-positive individuals and not getting any kind of hazard pay,” Maura Sullivan, the director of government affairs at The Arc Massachusetts, told the HPR.
Now, providers are continuing to struggle financially due to lost revenue from day programs, increased staffing costs, and PPE expenditures. As state budget deadlines loom near, many worry that these programs will not survive without increased funding streams. The Massachusetts chapter of The Arc has launched a campaign called #DontCutUsOut, aimed at raising awareness of the priorities of individuals with intellectual and developmental disabilities during budget decisions.
Though the fallout from the pandemic has been tragic, advocates express cautious optimism that, in the long term, it may open up opportunities for systemic change to the nature of housing for people with disabilities across America.
“There’s also been some hope and some kind of like rebirth, and people who feel like this is an opportunity for us to restructure and to really get in there,” Sullivan said. “It’s like our programs have collapsed down, and now we have a chance to pick them back up … a different way.”
Advocates hope that, amid the crisis, government agencies will finally commit to more significant investments in home- and community-based programs. Among other policy asks, they are fighting to eliminate the institutional bias in Medicaid funding, making home and community based service funding mandatory and expanding opportunities for services that are safer and more individualized.
Many are also pushing for the permanent reauthorization of Money Follows the Person, a Medicaid-funded grant program that supports Medicaid enrollees who would like to transition from institutional settings into the community. Between 2008 and 2019, the program has benefited more than 101,540 individuals, yet it is set to expire in November 2020. At least some of the ongoing advocacy appears to be making an impact, however. Just this week, the Centers for Medicare & Medicaid Services announced that $165 million will be allocated towards states currently operating in the Money Follows the Person programs, and that states will have until June 2021 to request a portion of the money.
Ironically, in the long term, the cost of serving individuals in an institution is much higher ($210,000 per year) than that of serving an individual in their own home in the community ($65,000 per year). Yet, the logistics of the transition would require a shift in funding streams that governments have been yet unwilling to make, according to Jorwic.
“Closing institutions requires a big upfront investment financially from a state, because while it is cheaper to individually serve people, the transition costs money, the staffing costs money, the housing costs money,” Jorwic said.
Beyond this government action, securing the right for individuals with disabilities to live within their own homes will also require a broader culture shift in social attitudes around the IDD population –– one which, for so long, has remained largely invisible.
“We have to build general public understanding around these issues, because it can’t just be the disability community that’s screaming for a big investment that we’re going to need,” Jorwic said. “It has to be everyone to see the value of that — all voters.”
Image Credit: Photo by Josh Appel on Unsplash is licensed under the Unsplash license.
