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 she retired in 2018. She has also retired from work in her Twin Cities suburb, largely to escape the debilitating mental health strain from trying to make her autism seem nonexistent to employers.
“I use this time to work on things that are important to me and helping to improve the lives of people with intellectual disabilities all across the world,” she writes. “Through this work I have discovered I am truly passionate about advocating for people with disabilities!” (You can listen to her story in the public radio podcast I co-host, “small change: Money Stories from the Neighborhood” at Smallchangestories.org.)
Myrta Rosa, 64, lives with cerebral palsy and other disabilities in Elizabeth, N.J. She lives in her own apartment with support from Community Access Unlimited, a local nonprofit. Rosa currently works at Community Access part-time, shredding papers and doing other office tasks. The rest of the time, she advocates for people with disabilities, participates in 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’t do it anymore, while I still feel capable.”
Implications for Retirement for People With IDD
Barton’s and Rosa’s stories are drawn from Impact magazine’s “Retirement and Aging for People with Intellectual, Developmental, and Other Disabilities.”
“People with disabilities are living longer,” says Janet Stewart, editor-in-chief of Impact. “Their concerns are mainstream.”
The publication (paper and digital) explores the implications of longer lives for retirement, healthy aging, dementia, end-of-life decisions and other issues for people with what are known as intellectual and developmental disabilities or IDD. Impact is a publication by the University of Minnesota’s Institute on Community Integration; the masthead of a recent issue graciously lists me as one of four editors.
The combination of medical care advances and improved living conditions over the past several decades has boosted into the 60s the average lifespan of people with IDD. “People with disabilities are living longer,” says Stewart. “Their concerns are mainstream.”
Sad to say, the aging challenges confronted by the IDD community reflect and reinforce the larger failures of American society when it comes to an aging population.
We’re letting down too many older Americans with IDD. We’re also failing the frail oldest adults and their families with our porous caregiving system; we seem unable to shatter the employment barriers of ageism and age discrimination; we’re unwilling to make investments that tackle deep-rooted health inequities that accumulate with time and we aren’t adequately addressing the harsh reality that old age and economic insecurity are synonymous for too many people.
As Paul Irving, a senior fellow at the Milken Institute (he previously serving as the Institute’s president and founding chair of its Center for the Future of Aging) explains in the issue’s conversation with him and Michelle Putnam, professor in the School of Social Work at Simmons University: “We’re long overdue for a conversation in the United States about our values, about what we stand for. We talk a lot about our shared interests and community, but what does that really mean in America?”
What Could Be Helpful for Disabled Retirees
Amen to that, Paul Irving. (Irving was also a 2016 Next Avenue Influencer in Aging.)
Impact covers a wide range of aging topics, but for this column I’ll focus on retirement and people with IDD, which I found particularly intriguing.
Individuals with IDD typically depend on a complex variety of government programs for income and services support, such as Social Security, Supplemental Security Income, Medicare, Medicaid and community-based services; 71% of people with IDD live with an aging family member.
Many individuals with IDD want to work for purpose and independence, although the availability of employment opportunities for them has long fallen far short of demand.
That said, some do work and then retire. For example, the employment rate for those with IDD ages 55 to 64 in paid community jobs is slightly over 11%, according to Valerie Bradley, founder and president of Human Services Research Institute in Cambridge, Mass. The employment rate for the same age group in paid facility jobs is almost 18%.
For those with jobs, family caregiver surveys report that the workers express high levels of job satisfaction.
Like many other older workers, they worry about keeping their sense of purpose and accomplishment from the job, the social connections made at work and their independence when they retire.
Unlike the typical near-retiree and retiree, there is little information, research or planning guides to draw on about what makes for a successful transition into retirement with IDD.
“Retirement is something of a new idea,” says Roger Stancliffe, senior research associate at the Institute on Community Integration and professor emeritus at University of Sydney, Australia.
Stancliffe is concerned that the principal option for older adults with IDD in retirement is spending time in congregate disability programs or centers.
There is nothing wrong with the centers, but they’re siloed from the rest of the community. Stancliffe would like to expand the range of options available to the disabled retiree to ones of non-disabled retirees, such as joining socially inclusive community-based activities that reflect their interests.
“There is a whole world of community groups for older people that should be made available to people with disabilities,” he says. “This would enable people with disabilities to participate in the community.”
An Intriguing Program in Australia
Stancliffe and colleagues in Australia piloted such a program, and he is leading a similar experiment now in the U.S.
Briefly, a list of possible activities in the community is gathered and the person with IDD decides which activity they’d like to participate in when it’s time to make the transition to retirement.
“There is a whole world of community groups for older people that should be made available to people with disabilities.”
Among the activities chosen in Australia were joining a men’s shed, participating in a choir and volunteering at a community soup kitchen. Mentors and allies (often family members and friends) offer initial support and guidance.
It works well.
Nearly 90% of the disabled people who participated in this program in Australia remained with their chosen activity program after six months. The researchers found that both the disabled and the non-disabled people in these groups benefited from spending time together.
“Loneliness is much more prevalent among the disabled community than the broader community,” says Stancliffe. “This activity might help them make friends.”
Problem is, as Stancliffe makes clear, programs like this are the exception.
Innovations that seem eminently sensible run into the reality that institutions change slowly — very slowly.
Look at America’s colleges which still, outside a few notable experiments, haven’t invested in lifelong learning programs on campus despite the aging of the population.
“How do we create a movement that recognizes the value of lifelong learning, the urgency of investment in prevention and wellness and the need for social and caregiving supports that lead to lives of purpose and dignity?” said Irving in his conversation with Putnam. “We aren’t very good at doing those things, and we must do better.”
Reading through the Impact articles about aging and IDD reinforced my belief that the transformation driving so many older Americans to rethink and reimagine the later stages of life runs much deeper than simply redefining retirement.
Bringing the generations and people from all walks of life together —including those with IDD — and investing in improving their livelihood and choices will lead to a healthier society and a more vibrant economy.
The silos that are so prevalent in American society need to come tumbling down, and institutions must adjust to the new realities and opportunities. The knowledge is there. But so much more needs to be done on the practical front.
Sometimes impatience is a virtue.
©Next Avenue. This article was first published on nextavenue.org.