What Americans With Disabilities Need In Retirement

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By Chris Farrell, next avenue

Kayte Barton describes herself as a high-functioning autistic adult with mild cerebral palsy. Barton, 47, competed in every sport in the Special Olympics until retiring in 2018. She’s also retired from work in her Twin Cities suburb, largely to escape the debilitating mental health stress her autism seems to be none of the employers.

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“I use this time to work on things that are important to me and help improve the lives of people with intellectual disabilities around the world,” she writes. “Through this work I’ve found that I’m really passionate about advocating for people with disabilities!” (You can hear her story in the public radio podcast I co-host, “Small Change: Money Stories from the Neighborhood,” at Smallchangestories.org.)

Mirta Rosa, 64, lives in Elizabeth, NJ with cerebral palsy and other disabilities, in her apartment with the support of Community Access Unlimited, a local nonprofit. Rosa currently works in Community Access part-time, shredding papers and doing other office tasks. The rest of the time, she advocates for people with disabilities, attends her weekly bowling league and spends time with her sister.

“I haven’t decided yet when I want to retire,” she writes. “I want to keep working until I can do it no more, while I still feel capable.”

Retirement implications for people with IDD

Barton and Rosa’s stories are taken from the current issue of “Retirement and Aging for People with Intellectual, Developmental and Other Disabilities” of Impact magazine.

The publication (paper and digital) explores the impacts of retirement, healthy aging, dementia, end-of-life decisions, and other issues for people with intellectual and developmental disabilities, or IDDs. Impact is a publication published by the Community Integration Institute of the University of Minnesota; The masthead of a recent issue has graciously listed me as one of four editors.

The combination of advances in medical care and better living conditions over the past several decades has increased the average lifespan of people with IDD into their 60s. “People with disabilities live longer,” says Janet Stewart, editor-in-chief of Impact. “Their concerns are mainstream.”

Tragically, the aging challenges faced by the IDD community when it comes to the aging population reflect and reinforce the greater failures of American society.

We are disappointing many older Americans with IDD. We are also failing vulnerable older adults and their families with our porous care system; We seem unable to break down the employment barriers of ageism and age discrimination; We are unwilling to make investments that tackle the deep health inequalities that accumulate over time, and we are not adequately addressing the harsh reality that aging and economic insecurity are synonymous with many.

As Paul Irving, outgoing president of the Milken Institute Center for the Future of Aging and 2016 Next Avenue Influencer in Aging Professor in the School of Social Work at Simmons University and in a conversation with Michele Putnam on the issue explains: “We have a long pending conversation in the United States about our values, what we stand for. We talk a lot about our shared interests and communities, but what does that really mean in America?”

What Can Be Useful for Disabled Retirees

Amen to that, Paul Irving.

The effects of aging cover a wide range of topics, but for this column I will focus on retirement and people with IDD, which I found particularly interesting.

Individuals with IDD typically depend on a complex variety of government programs to support income and services, such as Social Security, Supplemental Security Income, Medicare, Medicaid and community-based services; 71% of people with IDD live with an elderly family member.

Many individuals with IDD want to work for purpose and independence, although the availability of employment opportunities for them has long been far less than demand.

They do some work and then retire. For example, according to Valerie Bradley, founder and president of the Human Services Research Institute in Cambridge, Mass., the employment rate for people with IDD aged 55 to 64 in paid community jobs is slightly higher at 11%. The employment rate for similar age group jobs in paid facility is around 18%.

For people with jobs, family caregivers surveys report that workers express higher levels of job satisfaction.

Like many other older workers, they worry about their sense of purpose and accomplishment from the job, social ties built at work, and maintaining their independence when they retire.

Unlike the typical near-retirees and retirees, there is little information, research, or planning guides to give an idea of ​​what makes for a successful transition into retirement with IDD.

“Retirement is a new idea,” says Roger Stancliffe, senior research associate at the Institute on Community Integration and professor emeritus at the University of Sydney, Australia.

Stancliffe is concerned that the major option for older adults with IDD in retirement is to spend time in mass disability programs or centers.

There is nothing wrong with the centers, but they are silent with the rest of the community. Stancliffe seeks to expand the range of options available to disabled retirees to non-disabled retirees, such as engaging in socially inclusive community-based activities that reflect their interests.

“There’s a whole world of community groups for older people that should be made available for people with disabilities,” he says. “It will enable people with disabilities to participate in the community.”

An interesting program in Australia

Stancliffe and his colleagues in Australia conducted one such program, and he is now leading a similar experiment in the US.

Briefly, a list of possible activities in the community is gathered and the person with IDD decides what activities they want to participate in when it comes time to transition to retirement.

Selected activities in Australia included joining a men’s shed, participating in a choir, and volunteering in community soup kitchens. Mentors and aides (often family members and friends) provide initial support and guidance.

It works well.

About 90% of disabled people participating in this program in Australia remained with their chosen activity program after six months. The researchers found that both disabled and non-disabled people in these groups benefited from spending time together.

“Loneliness is much more prevalent in the disabled community than in the wider community,” Stancliffe says. “This activity can help them make friends.”

The problem is, as Stancliffe makes clear, programs like this are the exception.

Innovations that seem insanely sensible run into the reality that institutions change slowly – very slowly.

Look at America’s colleges that still haven’t invested in campus lifelong learning programs despite the aging of the population, apart from a few notable experiments.

“How can we build a movement that recognizes the value of lifelong learning, the urgency of investing in prevention and wellness, and the need for social and caring support that leads to a life of purpose and respect?” Irving said in his conversation with Putnam. “We’re not very good at doing those things, and we should do better.”

Reading through impact articles about aging and IDD reinforces my belief that the change driving so many older Americans to rethink and reimagine later stages of life goes deeper than simply redefining retirement.

Bringing generations and people from all walks of life together—including those with IDD—and investing in improving their livelihoods and choices will lead to a healthier society and a more vibrant economy.

The silos so prevalent in American society need to come down, and institutions must adjust to the new realities and opportunities. The knowledge is there. But a lot still needs to be done on the practical front.

Sometimes impatience is a virtue.


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