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According to USAging’s “Policy Priorities 2022,” by 2030, an estimated 73 million - or one in five Americans - will be 65 or older. This portion of the population represents both older adults with disabilities as well as seniors who age into disability. As people with disabilities age, they and their families face unique challenges. However, they have common ground with people without disabilities who might age into disability including the right to live independently in their communities. The report adds that older adults face challenges to community living because of caregiver shortages, social isolation, and limited access to technology. Further, it is important to consider the social determinants of health when assessing the best ways for all seniors to remain in their communities as they age. According to the Centers for Disease Control and Prevention, social determinants of health refer to “the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.”
Experts have identified several needs for older adults with and without disabilities that would enable them to thrive in their communities. Deborah Stone-Walls, chief of programs and services at USAging, says the most pressing needs include supports that provide access to food and medical care and community-based social activities. To meet the needs of seniors aging into disability, USAging provides case management; money management; medication management; personal care; homemaker services; and yardwork and snowplowing services. However, Stone-Walls says direct support can be highly individual, and it is challenging to advocate for person-centered, whole-person supports for a client since individual plans cannot be applied universally. One key issue that older adults and adults with disabilities face is caregiver support. According to the USAging report, unpaid caregiver support expenses total $470 billion annually. Families, agencies, and the federal government must talk about how caregiver roles are created so that they can be replicated later, Stone-Walls says. “We’re now seeing individuals with intellectual and developmental disabilities (I/DD) in their sixties, and their caregivers are in their eighties,” she says.
Families across America are facing an aging population of caregivers continuing to provide care to an aging population of people with disabilities. How are we going to support new caregivers to step up?
Deborah Stone-Walls
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According to a survey conducted by Grantmakers in Aging from 2011-2017, 1 million American households contain an adult with an I/DD living with a caregiver age 60 or older. “More than half of these families have no plan in place for what will happen when the caregiver either passes away or is no longer able to provide care,” and the research shows that these caregivers spend more time caring for their loved one than caregivers younger than 60. Caregivers’ concerns about their loved one’s future often relate to social determinants of health, like access to and the quality of their health care, social isolation, and where their loved one will live.
Sometimes, she says, investments like home modifications might benefit a senior or an older adult with disability at one time, but they might provide long-term cost savings to an entire system. To illustrate her point, she told the story of a client who used a walker and was at risk of falling due to living with small dogs that lacked a pen. “We were able to use participant-directed services to replace her flooring and put in a doggie door with a small, enclosed pen so the animals had freedom to move in and out. Her fall risk dropped significantly. The right support is going to meet that individual’s idea of the right support at the right time,” she says. Stone-Walls acknowledges that the agency could have hired full-time personal care. Even though the construction was initially more costly, it saved money in the long term. The physical risk factors of falling and risk factors related to the risk of depression and social isolation if the client had been forced to relinquish her animals were eliminated by the simple solution of construction. But getting home modifications may not be as straightforward for adults with disabilities as they age. Typically, payment for home modifications for based on the state’s determination of need, and organizations sometimes struggle to provide all the supports people with disabilities might need or want to achieve independent living.
One common goal that experts point to for both seniors and older adults with disabilities is the desire to live independently. Stone-Walls notes that it is essential that older adults live in communities that allow them to remain physically and socially active. “The built environment impacts our ability to stay mobile or engaged, regardless of our age,” she says. The attraction to livable communities that makes that engagement easier is spreading as cities across the country incorporate livable downtown cores and suburban squares into their economic-development plans to draw new business, Stone-Walls says. This is known as the “live, work, play” model, and she says when done well, it could be a positive way to provide access to older adults and people with disabilities. But instead, some of those who could benefit most are being priced out of their communities. “Now, ‘live, work, play,’ is easier for wealthy people to do,” she says. Instead, she says, stakeholders should think about providing access to services and supports that people need to remain engaged members of their communities. Most crucial for seniors, though, is addressing social determinants of health, Stone-Walls says. Even when accounting for an individual’s disability-related risk factors, Stone-Walls says that social determinants of health like lack of access to health care, transportation, nutrition services, and opportunities to exercise were the dominant factors in accelerating the trajectory of disability for older adults. The presence of healthy food options, transportation access, and access to health care are all key features of livable communities.
Putnam, who is interim director of the school of social work at Simmons University, says Medicare, Medicaid, and managed-care programs are in the best positions to provide solutions to systemic issues that plague both middle-aged people with disabilities and older Americans with disabilities. In 1965, when the Older Americans Act was passed, she says, this legislation did not consider the needs of people with I/DD or any disability that was not due to age. In her Healthcare article, she encourages development of evidence-based practices for people aging with a disability acquired before 40 years old. “From the aging and disability perspective,” according to the paper, “the gap is…fundamental and results from…a historical lack of national attention to the health and wellness needs of people with disabilities, related in part to the outdated stereotypes that disability is synonymous with poor health.” The paper also argues that government funding for disability research has historically been inadequate. Because of inadequate funding, middle-aged adults with disabilities are less likely than their older peers to have access to evidence-based best practices that address all aspects of their health.
As long as we keep framing the public response from a social welfare frame, it makes disability seem like a problem to be addressed. But it’s normal to grow old. If you reframe it like that, you’d think differently about the investments you make. We should frame disability programming as an investment over the lifespan of individuals, because right now, there’s very little programming and policy that acknowledges that people grow older with disabilities.
Michelle Putnam
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To create these policies and programs, Putnam recommends not only a life course understanding of disability, but also, combining the populations of people aging with and into disability in research and examining heath care interventions earlier in a person’s life by comparing young people with disabilities to older people with disabilities. She thinks it would benefit both people with disabilities and the agencies that serve them if agencies that deliver social programming looked at disability through a life course perspective and could demonstrate how well their programming helps individuals with different types of disabilities at different stages of their lives. She believes social work is well-positioned to promote education about disability and aging because it fundamentally tries to understand the ways in which people move through their environments. Putnam’s philosophy is based on what she calls “positive aging".
"In the simplest sense, positive aging means you’re able to live the life you want and feel good about yourself,” she says. “COVID has highlighted the devaluation of older adults. If a whole nursing home got wiped out, the public would move on. But would you say that about an entire neighborhood block?” If the aging and disability networks work together, rather than separating clients by age, both historically devalued groups could benefit. Working together would help people with disabilities in middle age and beyond as they begin to experience various forms of premature aging. Premature aging is defined as exhibiting the complications of aging before a person reaches physical or mental old age. According to “Cerebral Palsy Guide,” people with CP, for example, use five times the amount of physical energy as people without CP when walking or moving around. A lifetime of expending this energy to perform everything from daily tasks to strenuous exercise increases the likelihood of pain, stiffness and arthritis, difficulty walking, increased fall risk, poor dental health, and other conditions. These conditions can manifest by the time a person is between the ages of 20 and 40 years old. Because these physical problems appear earlier than in their typical peers, individuals with CP and other forms of I/DD are at risk of misdiagnosis when a doctor who doesn’t take premature aging into account blames physical or mental difficulties on the person’s age or disability, but not both in combination over a lifetime. People who experience premature aging are also at increased risk for mental health difficulties, according to “Cerebral Palsy Guide.” Kathleen Bishop’s research in The Journal of Psychosocial Nursing found that these mental health problems are a byproduct of bias in health care. They occur when general practitioners compare the person’s function as they age to the aging problems experienced by the general population. Instead, Bishop wrote, practitioners should focus on the culmination of an individual’s experiences with the medical system. This focus can help define their baselines as they age.
Putnam says despite the benefits of combining forces with the aging and disability movements, these two groups can have different needs when it comes to aging and socialization. “For a subset of the population who are younger when they experience disability, they often maintain those networks of support with other people with disabilities,” she says. “Their social networks may have a stronger disability identity. For people who first experience disability when they are 50, 60, or 70 years old, disability can be seen as part of a life stage. They won’t do things like join a political movement. But isolation can happen for a variety of reasons for both groups.” For individuals with disabilities, social isolation is sometimes tied to medical trauma. But being part of a community can counter trauma and social isolation.
Stone-Walls says that mistrust is a feeling the aging and disability communities sometimes share. To bridge the gap in services used by ethnically and racially diverse groups of older adults who are aging into disability, USAging’s EnhanceFitness program aimed to meet these seniors where they live. These workout classes meet in cultural centers and faith-based communities around the country in which seniors already cultivated active social lives. “People didn’t have to get over the hump of, ‘I’m going to be new; I won’t know anyone,” Stone-Walls says. According to data released by The National Council on Aging in August 2020, participants in the program reported 35% improvement in upper and lower body muscle strength and function; 52% decrease in depression symptoms; 13% increased social function; and 26% reduced risk of falls. Stone-Walls said the topics of conversations changed, too. Instead of discussing pain, they were cheering one another on. “You need a couple of champions in there, but it becomes the norm to move,” she said. The program has been conducted in multiple languages and is adapted to the mobility needs of seniors with disabilities.
Though programs like these are strong assets for seniors aging into disability, financial challenges and difficulties related to coverage persist for people with disabilities younger than 65 who don’t qualify for Medicaid. Putnam said the Administration for Community Living has indicated through public notices and calls that issues related to I/DD and aging are on its radar. But, she said, more public-policy solutions need to be enacted. Research from the Kaiser Family Foundation shows that the Affordable Care Act improved access to Medicaid for SSDI recipients younger than 65. But people with disabilities who are younger than 65 face coverage challenges as they age, despite broader access to some HCBS services. “Having a disability can be expensive,” Putnam says. When she talks about public policies that can help people with disabilities as they age, legislation to address poverty in retirement is a key piece of the conversation, because it would benefit both older adults with disabilities and those without disabilities. Retirement legislation might also prevent the institutionalization of individuals with disabilities when they get older, since Putnam says in many cases, families choose congregate living because they don’t know about other options. She thinks the only situation in which someone should choose congregate care is if the person is single, isolated, doesn’t feel safe in the home, and has ample income to provide “concierge-level care.” The picture of congregate care for older adults can look very different than that for most Americans, she said. “But I’m not completely pessimistic. I’m waiting for the next decade, for assumptions to change.”
For quality of life to improve, advocates agree research must begin to address the gaps in knowledge and services for both middle-aged adults with disabilities and disabled older adults. “Aging is certainly better than not aging,” Stone-Walls says, but the services and supports must be available for all adults to do so comfortably.