Hidden in Plain Sight

The Impact of Coronavirus on Adults with Intellectual and Developmental Disabilities (IDD)

By Astri Doub | astri.doub@yale.edu

At the start of 2020, when Covid was a news story in the US rather than an everyday reality, Tucker settled into his own ‘new normal’. Tucker is a 24-year-old with Down Syndrome from Baltimore, MD. At 19, he moved out of his family home and into a group home for adults with intellectual and developmental disabilities (IDD). After the initial move, his housing agency moved him another two times before ending up in his current apartment complex with two compatible roommates.

As Tucker moved between living situations, his family also searched for a day program where he could learn and work in a supportive setting. He was in school for the first year after he moved out, but when he finally graduated at 21, his mother Diana struggled to find a program: “I thought that was just a given: you graduate and went to a day program.” Tucker tried out the program run by his high school, but “he didn't last nine days and partly that's his behavior, but I was disappointed and concerned. . .This has nothing to do with the pandemic. This is just Tuck and his situation.” Diana looked for a year before finding a program to take on Tucker, and he received no structured programming during that time.

Although finding appropriate housing and day programming for Tucker took years, compared to many, his situation is enviable. As described by the Arc Senior Public Policy Director, Nicole Jorwic, “Before the pandemic, there were over 820,000 people on waiting lists for home and community based services (HCBS).” Many people wait to get into supportive living arrangements and community programs for years because, just as Diana discovered, entitlements for people with disabilities drop off after graduation. Nicole describes that across the country, “So many people don't realize the problems in the system until they need them. . .They think Medicare will cover HCBS without realizing the only entitlement right now is to institutional services.”

Getting into a day program requires countless hours of advocacy from caregivers that many families do not have and cannot dedicate until it is too late. This advocacy often continues for the entirety of an individual’s adult life. At Diana’s last meeting with Tucker’s day program before the pandemic, she pleaded with them to better fulfill their promise of community-based activities: “The goal, you know, is to go out in the community, but if Tucker says no–and he’ll say no to a million dollars; he’ll say no to ice cream–then they just hang out there all day, which to me defeats the purpose of the program. At that last meeting, I was trying to put things on his plan to be more active, be more physical because once he starts something, chances are he'll grow to like it.“

Developing plans with the staff at different HCBS also proves difficult because staff changes constantly. “The direct support professional workforce that typically serves people with intellectual and developmental disabilities has a national turnover rate of nearly 50%,” Nicole explains. “It also has incredibly low wages, the national average wage is less than $11 per hour, and they either have to seek a huge amount of overtime or work other jobs just in order to maintain their families.” Caregivers must trust staff members with their loved one’s safety and wellbeing, but developing relationships becomes difficult as the staff themselves are overworked and underpaid to the point where they often do not last.

These conditions are not just difficult for those with good intentions, but they create a breeding ground for abuse. In 2016, the Chicago Tribune investigated Illinois group homes and discovered 42 deaths caused by abuse or neglect from seven years prior. As families work to make their loved one’s situation better, they also must constantly be on guard for the worst case scenarios.

Before the pandemic, HCBS were strained and riddled with problems. For the IDD community, COVID exacerbated existing problems and fears, in addition to adding the new struggles of pandemic life. Like the rest of the country, Tucker was quarantined immediately, and because he would not wear a mask, he could not even leave his apartment. While pre-Covid, Tucker saw his family every weekend, Diana “didn’t get to see him for Easter, I didn’t get to see him on his birthday, I did not get to take him out until June 2020. . .that was probably the longest separation we ever had.” At points, his parents would go to see him in person standing outside the complex with Tucker inside the building: “I’m not allowed in, and he’s not allowed out, but he’s trying to come out, and they are blocking him. . .that felt like it was torture for him and for us.”

His day program did offer a virtual option, but Diana explains, “virtual is not Tuck’s strength. When they did the zoom with his day program, he wouldn’t sit still.” He stopped attending the day program, which meant a return to the long, unstructured days he faced immediately after graduation.

Cutoff from his friends and family outside his apartment, the pandemic was lonely for Tucker. Nicole, a sibling of someone with IDD, shares that, even in pre-Covid times, “I know my brother's world can be pretty small. And then you layer something on like COVID. The social isolation that can already be, unfortunately, in existence for a lot of people with disabilities can only be exacerbated.”

Tucker’s daily entertainment and stimulation became limited to the iPad. When his family began taking him out again in June 2020, they noticed that “as soon as we get sort of near his apartment, he'll say Barney, Barney. And it's not necessarily Barney, but Barney means all videos. That clearly is something that he relates or correlates to his apartment.” The only word he associated with his apartment was a TV show. Even being out with his family proved difficult, as “Tucker would refuse to do activities he once loved, and that never happened before the pandemic. All the social skills he had practiced for years went out the window.”

Additionally, there was constant fear that the staff may decide not to show up to work, as they faced the risk of illness everyday going to their jobs. As money got pumped into various industries and even directly to individuals in the form of stimulus checks, there was no increase in HCBS funding. Policymakers largely left the disability community by the wayside. Nicole notes, “We saw that policymakers were not necessarily thinking specifically about the disability community or about the workforce that supports them in a variety of pieces of legislation. There was no dedicated funding for Medicaid HCBS passed by Congress last year.”

The lack of funding went hand-in-hand with the lack of reporting on COVID cases in the IDD community. When asked about the impact on people with IDD, Nicole responds, “We don't have that data. . . During the pandemic, the CDC and other agencies were requiring reporting in facilities like nursing home, but were not making those same requirements across the board for places like institutions for people with disabilities that are still open in 36 states or group homes.“ In July 2020, The Disability and Health Journal published a study in response to the lack of information on the IDD community, which showed people with IDD under 75 were over 30% more likely to die from COVID than the general population. However, it received little publicity, no follow-ups about the risk level of individuals with different diagnoses, and no increased aid from federal or state governments. It was not until October 2020, that a British scientific journal, The Annals of Internal Medicine, reported that people with Down Syndrome, like Tucker, are 10 times more likely to die from coronavirus than the general population. Still, the federal government never provided aid in 2020 for HCBS serving this high-risk population.

Information on infections and deaths also does not document the behavioral regression of adults due to the break in routine and lack of stimulation, which Diana saw firsthand. Even as Tucker’s family helped him adjust back into their weekly family routine, skills developed in his day program have not been practiced since March 2020. As people started getting vaccinated in January 2021, his day program began to open up, but only to people who required less support. Over half a year later, Diana says, “I have heard nothing. It has been very frustrating for me that lack of communication because he can tell us little to nothing, so we rely on other people to give us feedback.” Programs cherry-picking which participants can return hurts those who need these programs the most. However, the lack of funding available for staff, transportation and different activities leaves few other options.

At the beginning of 2021, one act was passed on the national level which provided funds for group homes and programs. Thanks to Policy Directors like Nicole, “In March of this year, The American Rescue Plan Act did finally include funding, totaling $12.7 billion, that really should have passed the year before. . .It's filling in holes to a ship that is sinking.” However, while these funds can help allow for the reopening of community services and increased safety supplies, it cannot solve the long-term shortage of programs available and staff. As Nicole explains, “It’s one year. One year of funding. States aren't going to do anything long term with that.”

Still, there is a glimmer of hope. For Nicole and other policy workers, the future of HCBS depends on the passage of The Better Care Better Jobs Act. Part of the Biden Administration’s Build Back Better plan, The Better Care Better Jobs Act would provide long-term funding into HCBS as more and more aging parents struggle to find living and working arrangements for their adult-children before it's too late: “This is a historical investment in a system that is crumbling. With the additional funding, more programs could be created to serve the people still on waiting lists and also alleviate the staff shortage.”

The national progress remains abstract for many families and organizations who lack the necessary supports today. For now, Diana, along with caregivers across the country, will keep fighting every day to make sure Tucker and other loved ones with IDD are safe and happy.

Writer’s Reflection

Having an adult sibling with autism and Down Syndrome, I know firsthand the shortage of programs available for daily activities and living arrangements, along with the constant problems in the services that exist. I wanted to give people a glimpse into these struggles and how they were exacerbated by the pandemic because the public’s lack of knowledge can often leave me feeling like my brother and other adults with IDD are invisible even with services based in the community. I found capturing the IDD experience to be difficult because every person is different, and every pandemic experience is different. However, I hope this glimpse into national trends and a personal story act as a starting point to grow people’s knowledge of issues facing the IDD community and support for acts to increase HCBS funding.