Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

Michelle Putnam and Paul Irving recently sat down to assess the progress being made to bring the aging and disability communities together. The following is an edited transcript of that conversation:

Michelle Putnam:  Most of my career has been focused on bridging aging and disability. I have academic training in gerontology, disability, and social work. Depending on where I am, if I’m with gerontologists, I’m a disability person. If I’m with disability specialists, I’m a gerontologist. 

I just wrote a handbook on aging with disability with a colleague, and one of our conclusions is that we’ve been doing this work for decades and not much has changed, and we’re both really frustrated by that. The bridging work that’s been done by the Administration on Community Living is connecting the two fields, but it’s not really integrating them. We’re not intellectually breaking through the stereotypes. While things may not be as siloed as they once were, there’s very little integration in a way that would be useful.

For people with IDD and physical disabilities, so many of them didn’t get a chance to work or have a career, so retirement may not even be a thing. Or if they did work, they might not be able to retire because they need the money. I’m part of a research center that is looking at a group of people ages 45-64 with long-term physical disabilities. Among them, 70% have SSDI and 80% aren’t working. They have significant symptoms related to their conditions, but they should be working if they want to, and a good share of them would like to.  If people are out of the workforce, it’s important to ask how many of these people never got enough education, resources, or workplace flexibility or supports to get and keep a job? People want to do something with their day, but we haven’t set up safety net programs that allow people to move through the phases or cycles of disability as they age. We haven’t shaped employment to truly offer shorter workdays with benefits or flexible work formats, for example, that could make the difference for so many people with disabilities to navigate employment and the disability experience. And so many people with disabilities end up very low income and struggling in their retirement years because of employment situations in their younger years. Added to that, if you didn’t get adequate health and wellness support and care in your early and middle years, you may end up with significant chronic conditions in older ages. The other piece to consider relates to caregiving. For parents who have a child with IDD, they often end up with a really different profile in retirement, financially and physically, than their peers without children with disabilities. The same is often true for family members of persons with physical disabilities who provide long-term support and care. The support systems just aren’t there to help individuals and families navigate disability long-term and over the life course 

Paul Irving: We seem to be doing the same thing over and over and expecting a different result. We have to acknowledge what hasn’t worked and learn why things haven’t changed. If we think about this broadly as a set of investments for a better future, it brings to mind our current debate about what constitutes infrastructure. We seem to agree on the need to invest in updated bridges, tunnels, and airports, but we disagree about the importance of investing in human capital, in realizing the value of people of all types in our heterogeneous population. Many years ago, Singapore recognized that without vast natural resources, its opportunity for success rested in its people, and it made extraordinary long-term investments in education and public health and in ways to ensure that its population was engaged across the life course according to individuals’ capacity. Why in America don’t we place value on improving lives in the ways that many of our advanced-country peers do? Read The Commonwealth Fund’s health report . Despite great advancements in science and capabilities in our health ecosystem, our outcomes are poor relative to peers. 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? We aren’t very good at doing those things, and we must do better.

We know that aging and disability certainly overlap. Special Olympics and the Paralympics are wonderful examples of what can be done for young people, and those programs now include older athletes, but we have to learn how to expand opportunities for older adults living with disabilities. Older adults represent potential for economic growth and vitality through intergenerational collaboration, and their wisdom and experience can serve younger generations, but we tend to get mired in the conversation about care needs, diminishment, and decline. I don’t see these two ideas as incongruous. We just need to engage cultural institutions – media and social media to change the narrative and explain both the challenges and the great possibilities of aging.

In a world of OK Boomer memes and selective healthcare rationing, we must actively engage and advocate; we can’t just write peer-reviewed journal articles and expect to make change. I tweeted recently about a group of older environmental activists demonstrating for policy and practice changes that will realistically only help the next generation, not themselves. A Greek proverb says, “a society grows great when old men plant trees in whose shade they shall never sit.” Older people can and must play a part in solving our greatest societal challenges, and keeping them meaningfully involved in their families and communities is not just morally right, but it can tangibly improve the lives of future generations

Speaking of the future, we really have to talk about the role of technology. There’s no question that technology, equitably distributed, has the potential to dramatically enhance independent living, from working from home to telehealth and beyond. Might technology advances also replace jobs once done by older workers and those with disabilities? Yes, it is a risk, but there is a strength of older people in addition to their experience and wisdom. It’s empathy, one of the hardest things for artificial intelligence and digital innovation to displace. The depth of understanding, the intuition, the ability to navigate complexity are characteristics we have acquired over decades, through the joys and sadness of life that are irreplaceable.

Putnam: I agree that infrastructure is a big part of the answer. We’ve designed everything to segment people by age, but people don’t “act their age.” Rigid age constructs on benefits leave people with disabilities out. In the social policy graduate classes I teach, we talk a lot about the SNAP nutrition program because of its ability to flex and be responsive to changing circumstances – it can modify eligibility, application processes, and other elements in a way that most aging and disability programs cannot, or have not. For example, people with IDD tend to grow old within the IDD program silo and do not cross over to programs serving the general older adult population. This can result in persons with IDD not being well-served as they age as most IDD service providers aren’t trained in aging issues and most aging providers do not have training about IDD. There’s also individuals’ mindset. The aging movement has historically wanted to move away from old age being synonymous with disability and focused on deficits of aging. On the disability side, the IDD and broader disability communities do not want to be considered frail, in need of “care” and stuck into nursing homes. Over time, culturally, this has created some polarization that limits the ability to integrate disability and aging programs and policies. But real people live their lives across the two, and they need programs that are effective across the lifespan. The average lifespan of people with IDD used to be in the 30s, now it’s the 60s. The same is true for persons with physical disabilities – lifespan is not necessarily shortened as it might have been years ago for people with significant impairments or injuries.  We haven’t reconfigured our policies, programs, or professional training for longevity with disability. We also don’t collect good data on how people are living long-term with disabilities. A longitudinal study over the life course would be useful – or just adding variables related to time of onset or duration of disability to current data sets. If I had an unlimited budget to invest, at this point, I’d probably put it into training and into understanding what people with IDD need as they grow older. There have been many meetings about bridging aging and disability over the years, but not much action. We’ve knitted together some service networks but we haven’t changed what anyone is doing that much. My sense is that there is a lack of knowledge about what it’s like to grow older with IDD or physical disability – or other disabilities for that matter. What does it look like? There’s a need to build knowledge about what’s unique about growing older with IDD and other disabilities and also capacity to help people with disabilities live well in later life.

Irving: I suppose that I’m more cynical than that. If I had an unlimited budget, I’d try to buy attention from politicians and policymakers. There are so many issues we could take on if we could incentivize government to act and act rationally. As I wrote in a piece earlier this year, if we had simply made an investment years ago in addressing hypertension in communities of color through medication and education, we might have saved thousands of lives lost from the coronavirus. There is data on the minuscule percentage of American homes that have the five most basic universal design elements to enable safe aging in place. It’s absurd. The U.S. housing stock is unprepared for the realities of the aging demographics of the country. And universities and health systems haven’t acted quickly enough to adapt to the new demographic landscape. Birth rates are at historic lows – well below replacement rates – and yet lifelong learning programs on most campuses are just a sideline. With fewer children being born and the likelihood of longer lives ahead, we must persuade policymakers, business leaders, educators, urban planners, and others to change their thinking.

Putnam: As long as we’re talking about big policy ideas, how about addressing the fact that so many people with disabilities are at risk of being institutionalized because their parents are no longer able to care for them and they don’t have siblings to do so? If you have IDD, can you get a universal basic income that keeps you out of poverty? Right now, many people with disabilities just have Supplemental Security Income, so by default, they are broke.

Irving: I completely agree. We should be ashamed of the longevity inequality we see across communities and zip codes. I’m so frustrated when I hear complaints about entitlement costs. The reality is that wealthier, healthier people are going to be around to enjoy Social Security and Medicare benefits far longer than their less fortunate counterparts.

Putnam: Along with that goes the very real disparities among the states in how they allocate Medicaid benefits. States’ decisions about that have such a powerful influence on rates of obesity, cancer, and so many other health issues.

Irving: 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? Do we buy into this notion of fierce independence, self-interest and the rest be damned, or do we believe in a collective responsibility to our communities and each other? The COVID-19 vaccination debates have elevated this question and it is time for an honest answer about whether we are in this together or going it alone.

Putnam: I think what it comes down to for people with disabilities is that inclusion and self-determination falls away in later life. Those issues that parents of persons with IDD started advocating for all those years ago during the start of the disability rights campaigns start to fall away and there’s an atrophy and reduction of so many things people with disabilities worked for, for so long.

Irving: Perhaps there is hope in the fact that there is no escape from old age for all of us who are fortunate to survive. Unlike race, gender, religion, or political affiliation, it is our common destiny. As Isabel Wilkerson writes in Caste: The Origins of Our Discontent, the final caste is old age, and the system spares no one, even the most privileged. Both of our worlds deal with “isms,” and when we recognize that we will all find ourselves aging and/or living with disability eventually, I hope that will lead to greater understanding.

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