Home-and-community-based services (HCBS) cover a wide variety of supports, from personal care needs to health promotion and disease prevention, for people with disabilities and older adults. For individuals with dual diagnoses of intellectual and developmental disabilities (I/DD) and issues with mental health, “systems are not coordinated in a way to treat (them),” said David Hughes, president of Human Services Research Institute (HSRI).1 Therefore, care coordination is often a challenge. The COVID-19 pandemic strained many of the services offered by HCBS programs and required organizations to adapt.
Mental health is defined as “our emotional, psychological, and social well-being…[and] affects how we think, feel, and act. It also helps determine how we handle stress, relate to others, and make healthy choices.”2 New research by Emerson, Eric; et al. in Disability and Health Journal, reveals that people with disabilities experience loneliness, social isolation, and mental health difficulties at higher rates than individuals without disabilities.3 The study revealed that 17% of people with disabilities reported loneliness, compared to 4% of people without disabilities who reported loneliness during the study period.3 This disparity has only worsened during the COVID-19 pandemic. And according to additional new research by Heinze, Nikki, et al, published in the academic journal Frontiers in Public Health, “individuals with disabilities…experienced consistently higher levels of loneliness than those with no disabilities throughout the pandemic.”4 The study also found that those who experienced anxiety related to personal wellness, social connections, and financial issues may have practiced stricter social distancing measures and experienced greater feelings of isolation and loneliness.4 Since medical care and non-medical supports were either restricted or perceived to be restricted at the pandemic’s onset, people with disabilities were acutely aware of the disruption of services.
Individuals with disabilities…experienced consistently higher levels of loneliness than those with no disabilities throughout the pandemic.Heinze, Nikki, et al. Frontiers in Public Health. 2021.
Psychologist Karyn Harvey, who is based in Baltimore and works with people with I/DD, ventured into new ways of practicing during the pandemic to combat these issues.5 She embraced teletherapy and began providing more pro bono work than she had been doing prior to the pandemic. These developments were good news for her teletherapy clients, many of whom might have been out of driving distance from her.
Harvey’s practice focuses on people with dual diagnoses of mental health difficulties and I/DD. “Their needs are never being met,” Harvey said.5 “So often, they are labeled as [having] behavioral problems and it is believed they are being manipulative, when what they are experiencing is a mental health issue. Because [their] disabilities are so misunderstood, people with disabilities are isolated more than the rest of us.”5 Harvey said she admired staff and doctors who provided care in group homes during lockdown, but also recognized the mental health difficulties faced by both residents and staff. “The mental health effects of isolation are not to be underestimated,” she said.5
Harvey helps her patients understand that the unique grief they felt during the pandemic was a typical coping response. She said the biggest issues she sees in her practice almost two years into the pandemic are fear of returning to day programs, agoraphobia, anxiety, and depression. “There is joy in people getting back to their lives, but people are scrambling to get booster shots, because we’re still not out of the woods,” Harvey said.5 She adds that staff, too, do not want to risk the health of their families.
Because [their] disabilities are so misunderstood, people with disabilities are isolated more than the rest of us.Karyn Harvey; Psychologist
Tatiana Perilla, a project coordinator at the Institute for Disability Research, Policy, & Practice at Utah State University, says the mental health difficulties experienced by people with I/DD are worsened by a lack of effective providers. “Every layer you add, the number of providers you can see gets limited,” she said.6 “If someone has a disability, now you’ve just lost a lot of possible providers. Then, if someone lives in a rural community, you have even fewer providers. If someone comes from a multicultural background, then you have even fewer. Training for mental health providers on dual diagnoses of mental health and disability is a big piece of the puzzle.”6 Since not every physician or mental health provider is trained to work with people with disabilities, people often face barriers when seeking effective mental health care. “A lot of times, disability isn’t talked about in the way that it intersects with mental health,” Perilla said. “We need more research that’s looking at the intersection, and we need more training. I wish we could do something that made it easier to learn about mental health and disability.”6
In addition to the difficulties faced by the general population, Perilla is part of a team conducting community conversations with individuals with disabilities and people from multicultural backgrounds. To address the issues faced by people with dual diagnoses who are members of minority communities, she has made an effort at relationship building. “A big strength of these rural communities is there are already some coalitions in place. There are already groups of people who do it because they care, and they are interested in it. Why do we need to reinvent something that’s already there?” she said.6
Instead, Perilla’s team has focused on the community conversations and initiatives such as digital storytelling via podcasts. She stressed the importance of the self-advocate experience and said she has learned the most from talking to them. Her favorite question to ask, she said, is, “What are helpful things you do to support your mental health?” She realized the toll taken by the pandemic’s necessary social-distancing measures after speaking with group home residents and staff.6 Because staff at group homes were distancing, “they weren’t as likely to go up and strike up a conversation. Everyone felt that lack of connection, but some people felt it in different ways and to a greater degree.”6
A lot of times, disability isn’t talked about in the way that it intersects with mental health...We need more research that’s looking at the intersection, and we need more training.Tatiana Perilla; Institute for Disability Research, Policy, & Practice at Utah State University
In Maryland, Harvey says she has experienced worsening staff shortages that are present and continue in every state. “Staff have put their lives on the line,” she said. “When people were quarantining in group homes, they still needed help. There has been such a depletion in the workforce because these are not highly respected jobs in our culture, and they’re low-wage jobs. Many people just quit.”5U.S. News and World Report cited the September 2021 example of InCommunity, which is based in Atlanta and provides community services and support to people with I/DD.7 According to the article, InCommunity had 166 openings out of 490 positions, compared to 80 openings before the pandemic. COVID-19 had forced staff to make a difficult choice, as much about the virus was unknown early in the pandemic.7
The Staff Stability Survey from HSRI estimated the turnover rate for direct support professionals was 43 percent nationwide in 2019.8 These high rates of turnover reduce the quality of services people with disabilities receive and may contribute to challenges with getting adequate mental health supports. One way to ease the strain on DSPs and medical professionals who care for people with disabilities is to embrace the concept of universal design, Perilla said.6 She advocates that everyone receive training in working with people with disabilities. “Disability is seen as its own thing,” she said. “(Mental health professionals) will say, ‘Oh, I never see people with disabilities, so there isn’t any need for me to learn about it.’ If you can make your program work for somebody that does have support needs, it’s probably going to work for a whole lot of people.”6
Harvey’s practice is proof that when funding is available, these programs work well. She received relief money from The American Rescue Plan, which she has used to fund workshops and training for state agencies and other organizations that provide services to people with disabilities.5
When people were quarantining in group homes, they still needed help. There has been such a depletion in the workforce because these are not highly respected jobs in our culture, and they’re low-wage jobs.Karyn Harvey; Psychologist
The contrast in the state-by-state experience of pandemic restrictions reveals the need for standardized practices and increased input from the self-advocates themselves, Perilla said. “So often, there’s a tendency in the academic world: ‘We are the professionals; we are going to come up with these resources and give them to people…Sometimes, there is this misconception that you can’t use the same therapeutic modality, because you’re working with someone with a disability. That is not the case; it is just focusing more on how you’re going to communicate. But that’s not changing everything that you’re doing.”6
The adaptations for which Perilla and Harvey advocated during the pandemic, like teletherapy and increased community engagement, are examples of the “curb-cut effect,” ways that programs designed for people with disabilities can benefit all people who need mental health services. Many people in the public are, understandably, experiencing pandemic fatigue and beginning to move on from its worst. But unique program design can only endure if the public realizes its value for all people, and especially for those with disabilities.
- Hughes, David. Interview. By Lacey Lyons. 9 Nov. 2021.
- U.S. Department of Health and Human Services. “What is Mental Health?”. What Is Mental Health? | MentalHealth.gov. May 28, 2020. https://www.mentalhealth.gov/basics/what-is-mental-health
- Emerson, Eric, et al. “Loneliness, social support, social isolation and wellbeing among working age adults with and without disability: Cross-sectional study.” Disability Health Journal 14, 2021. https://doi.org/10.1016/j/dhjo.2020.100965.
- Heinze, Nikki, et al. “The Long-Term Impact of the COVID-19 Pandemic on Loneliness in People Living With Disability and Visual Impairment.” Frontiers in Public Health 9, September 2021. https://www.frontiersin.org/articles/10.3389/fpubh.2021.738304/full.
- Harvey, Karyn. Interview by Lacey Lyons. Microsoft Teams interview. 27 Oct. 2021.
- Perilla, Tatiana. Interview by Lacey Lyons. Zoom interview. 3 Nov. 2021.
- Kaiser Health News. “Staffing Shortages Undercut Caregiving Industry for Those with Disabilities.” US News and World Report. 24 Sept. 2021. Nov. 2021, https://www.usnews.com/news/health-news/articles/2021-09-24/low-wages-and-pandemic-gut-staffing-support-for-those-with-disabilities.
- National Core Indicators. “National Core Indicators 2019 Staff Stability Survey Report.” 2020. https://www.nationalcoreindicators.org/resources/staffstability-survey/