Barriers to Access and Utilization of Care Persist for Individuals with Disabilities in Rural and Urban Settings

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There are an estimated 41 million people with disabilities in the United States, according to census data from 2019. While individuals with disabilities can be found in every community in the US, researchers have noticed certain trends in the rates of disability by geographic area. According to The University of Montana’s “Disability in America” map series, disability rates tend to be the highest in the Southeastern United States, particularly in Appalachia, in northern Maine, in northern Michigan, parts of the South and Northwest, as well as in Puerto Rico. According to data from The Population Reference Bureau, the rate of reported disability in 2018 in Appalachia was 17%, compared to 12% nationwide. Often, rural areas also experience high rates of poverty. There is a strong relationship between disability and poverty; people with disabilities are more likely to be poor than those without disabilities, and those who are poor are more likely to become disabled. This relationship increases the risk of negative health outcomes for people with disabilities who are poor. Experts at The Vanderbilt Kennedy Center and the state of Tennessee say families in poverty with disabilities in Tennessee and nationwide face difficulty both accessing and utilizing long term services and supports (LTSS), whether they live in rural areas or urban ones.

Where a person with disability lives, whether in a rural or urban area, affects the barriers they experience. For example, people with disabilities in rural and urban areas, often describing that finding affordable and accessible housing is very difficult. In urban areas, residents with disabilities face rising housing costs or unsafe and/or inaccessible housing. In rural areas, distance from loved ones and from services is a significant barrier. These barriers hold for both those who receive income from Social Security and those who do not. According to US census data from 2021, median gross rent nationally is $1,096. The Center on Budget and Policy Priorities reported that nationally, social security disability insurance benefits average $1,359 per month. This means that options for housing for people with disabilities tend to be very limited.

Janet Shouse, a disability employment specialist at Vanderbilt Kennedy Center, and mother of Evan, who has autism, serves families whose children have significant behavioral issues. Rural individuals placed in supported housing are an average of 90 minutes away from their families, she says. “If you’re thinking about a typical kid going off to college, 90 minutes away is very nice.  But if you’re talking about a child who cannot communicate with you, or has limited communication, or has significant medical issues, or seizures, the notion that you’re an hour and a half away is problematic.”

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Despite data that suggests that the rates of disability are higher in rural communities, there are often fewer services available to people, including home and community-based services (HCBS). Ben Schwartzman, senior research assistant at Vanderbilt Kennedy Center, partners with The Arc to serve Dickson County, Tennessee. Schwartzman is the principal investigator of the Whole Community Transition Project at the Kennedy Center. This project develops community-based initiatives for youth who are transitioning from foster care and have Intellectual and Developmental Disabilities (I/DD). For example, some people who use HCBS may need vocational rehabilitation or other employment supports. Schwartzman says the vocational rehabilitation provider in Dickson County has two staff members and serves six counties, whereas in California, where he previously worked, each county has its own regional center. He works with families trying to find physicians for a variety of types of care who specialize in working with adults with I/DD. In these rural communities, Schwartzman explains that he frequently hears, “‘There’s one doctor. You have to go to that one doctor to get on their list.’ So when I hear ‘choice,’ it’s a misnomer,” he says.

Yet urban residents with disabilities face barriers of their own. Shouse’s adult son, Evan, lives independently in a condo with the assistance of direct-support professionals (DSPs). Though Evan gets along well with his DSPs, service-plan delivery was challenging during the COVID-19 pandemic. Shouse says Evan is supposed to swim three times a week to lower stress levels and help with adjustment to change.  When the pool at his condo is closed, Evan swims at a recreational center. However, Shouse says, “We’ve just learned that he has not gone to the rec[reation] center with his DSP since March 2020.”  Shouse and her family also took pictures of seven local parks and greenways where Evan likes to walk, but he has only visited the park next door to his condo complex. While service-plan goals are not being met, Shouse says that his DSPs “get along with him and they’re willing to show up and work.” But the change in his routine has been challenging. She adds, “We’ve had quite a few behavior incidents over the course of the pandemic, in part because he has been so limited in what he can do.”

According to a report by The Anchor Foundation and United Cerebral Palsy, the turnover rate among DSPs in 2020 was 43%. Twelve percent of full-time DSP positions were vacant at the end of 2020, and 16% of part-time DSP positions were unfilled. These numbers have a direct impact on the lives of both urban and rural residents, including Heather Wilson. Wilson is a self-advocate who lives in rural Loudon, Tennessee, population 5,829. Wilson has spinal muscular atrophy, type 2, which she describes as being “like paralysis from the neck down, but I can feel everything.” She is 47 years old, so she has received services through a variety of programs over the years. She currently receives services through the TennCare CHOICES waiver, which provides respite care, adult day care, adult home care, community living supports, and other services. Wilson uses consumer-directed care for homemaking services, attendant care, and personal care. She manages the hiring of her own staff, a practice that she enjoys because of the degree of independence and privacy it provides her, compared to around-the-clock, live-in care. She needs hands-on assistance for “every single thing that life entails,” and choosing the people she allows into her life is important to her.

“My life would be very dark and dismal without the services I receive,” Wilson says. “I love the independence they give me, but I would like to be able to relax and feel secure in that, and I don’t.” The main reason for her anxiety, Wilson explains, is that any time she changes DSPs, there is a lag in time between the time it takes for her to find a new DSP and for that person to receive his or her official start date from the state. She says the average wait time has been around two months. In addition, she suggests there is a need to incentivize direct-support professional work. “Give me something to offer my employees, some sort of incentive that will make them want to do this work, because it is challenging, physically taxing work,” she says. The pay rate for DSPs in Tennessee increased to $12.50 per hour in July 2021,. Wilson says she has had employees who are satisfied with the pay, but move on to work at the local Chik-Fil-A for the benefits.

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When Wilson needs someone to fill in during the lag time between staff, her 72-year-old mother and her friends step in. She owns her own vehicle, but she says that’s only because no other transportation options exist. Her location also makes it difficult to find staff, because she’s on the outskirts of a city. “Lots of people will drive an hour for a well-paying job, and a denser population gives you a bigger hiring pool,” she says, adding that she is always surprised so few people with disabilities in her area know about their care options. She wishes the systems of health care and public policy moved quicker to reflect the desires of the disability community. “I’ve been on several community calls where there have been members who are receiving services who all have the same complaints,” she says. “The answer I get (from officials) is, ‘I wish I knew the answer.’” Though she’s thankful for the services she has, she says, “It could be so much better.”

States are trying to find creative solutions for individuals with disabilities in urban and rural areas alike. The use of assistive technology is one way for a person to stay in his or her own home and retain a level of independence. Equipment like motion sensors, stove guards, or medication dispensers, as well as mobile software apps, videos, and remote-support technology systems fall under HCBS spending. State officials in Tennessee invested in these supports prior to the COVID-19 pandemic and says familiarity with assistive technology eased privacy concerns about it. Assistive technology can be especially useful for people living in rural communities, who are longer distances from neighbors, friends, family, and their support staff. Enabling technology can “bridge the gaps and improve access and utilization” of HCBS in rural areas, says Katie Moss, deputy chief of long-term services and supports at TennCare. “We want people to be independent, to live the lives they want, but safely,” Moss says. Initiatives like remote support, which doesn’t affect paid caregiver hours, can give individuals access to care when someone cannot be there in person. However, states place limits on the assistive technology they will pay for. For example, a report by the Division of TennCare indicated service limits of $5,000 each year for enabling technology and assistive technology combined.

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“People’s needs are people’s needs, no matter where they are,” Moss says. She states that social determinants of health are still present, regardless of where a person lives. These still play a role in the lives of urban residents with disabilities and may have negative effects on their health, despite their closer proximity to care than rural residents with disabilities. But there are ways to bridge the gaps in care that people with disabilities in rural areas might experience, she says, including the use of telehealth and assistive technology, and allowing family members to be paid for care work. Mary Willard, director of training and technical assistance at The Association of Programs for Rural Independent Living, (APRIL), says there is a push nationally to pay family members who provide care and direct support for an elderly loved one or a family member with a disability. In rural communities, where there are fewer DSPs, paying family members to work as DSPs could be a game-changer, she says. According to Administration for Community Living, this might look like an expansion of the National Family Caregiver Support Program. Established in 2000, this program provides grants to states based on their shares of the population of seniors. These grants fund initiatives and tools that allow seniors who might need care to remain in their own homes. Willard says it is also important to work with the nation’s social structure as it exists. “We’re looking at ways to be creative,” she says.

The national care system is “a patchwork” that is difficult to discuss in terms of national trends, Willard says, and it’s important that solutions be tailored to the assets that communities have. For example, when speaking with institutions in the South, she recommends volunteers from local Christian churches, particularly those with large vans that could provide transportation to people with disabilities. In other places, APRIL has investigated the possibility of job development for youth exiting the foster-care system or enlisting volunteers from local nonprofits to provide light caregiving like cooking meals or reading aloud. “The number-one thing I hear about is the direct-care worker shortage, no matter who it is,” she says. Until states, or the nation as a whole, can find effective ways to address that issue, state and national officials agree both urban and rural residents with disabilities who need these services will be unable to achieve fully independent lives.

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1. Administration for Community Living. “National Family Caregiver Support Program.” Administration for Community Living, 13 May 2022, https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program.

2. Center on Budget and Policy Priorities. “Policy Basics: Social Security Disability Insurance.” CBPP, 17 Mar. 2022, https://www.cbpp.org/research/social-security/social-security-disability-insurance.

3. Cubit Planning, Inc. “Is Loudon the best Tennessee City for your business?” Tennessee Demographics by Cubit, 2022, https://www.tennessee-demographics.com/loudon-demographics.

4. “Disability in America Map Series.” National Maps-Research and Training Center on Disability in Rural Communities, University of Montana, 2022, https://www.umt.edu/rural-institute/rtc/focus-areas/maps/national-maps.php.

5. Moss, Katie. Personal interview. 6 May 2022.

6. National Conference of State Legislators. “Improving Rural Health: State Policy Options for Increasing Access to Care.” NCSL, Jun. 2020

7. Population Reference Bureau. “Report Explores Appalachia’s Current Strengths and Vulnerabilities.” Project Appalachia: Demographic and Social Trends, 2022, https://www.prb.org/resources/appalachias-current-strengths-and-vulnerabilities/.

8. Schwartzman, Ben. Personal interview. 2 May 2022.

9. Shouse, Janet. Personal interview. 2 May 2022.

10. State of Tennessee, Division of TennCare. Initial HCBS Spending Plan Projection and Narrative. 12 Jul. 2021, https://www.tn.gov/content/dam/tn/tenncare/documents/ARPAEnhancedFMAPPlanForHCBS.pdf.

11. United Cerebral Palsy and The Anchor Foundation. “The Case for Inclusion 2022: Blazing Trails to Sustainability for Community Services,” United Cerebral Palsy and The Anchor Foundation, 2022 https://caseforinclusion.org/application/files/1716/4658/7147/Case_for_Inclusion_2022_Blazing_Trails_to_Sustainability_for_Community_Disability_Services.pdf.

12. United States Census. United States Census Bureau. Anniversary of Americans With Disabilities Act: July 26, 2021. 26 May 2021. https://www.census.gov/newsroom/facts-for-features/2021/disabilities-act.html.

13. United States Census. United States Census Bureau. Quick Facts: Dickson County, Tennessee. 1 Jul. 2021. https://www.census.gov/quickfacts/dicksoncountytennessee.

14. United States Census. United States Census Bureau. Quick Facts: Tennessee; United States. 1 Jul. 2021. https://www.census.gov/quickfacts/fact/table/TN,US/PST045221.

15. Wilson, Heather. Personal interview. 25 Apr. 2022.

16. Willard, Mary. Personal interview. 5 May 2022.