Some stories reveal not just a person’s life, but the cracks in the systems meant to support them. Mickey Wesley’s is one of those. He was 11 when he moved into the boys’ dormitory on the Hammer campus in Wayzata Minnesota in 1978. He was a kid who loved church, bowling, and fishing.
He was born with both autism and Down syndrome. As he grew up, it was a tight-knit circle of people who helped him explore the world. They were like camp counselors according to his sister Julie.
Now Mickey is 58, and his needs have changed dramatically. He needs help with daily activities like bathing, toileting, and dressing. This level of care requires skill, patience, and deep familiarity. Today he needs caregivers who know him intimately, who can anticipate his needs, and who can spot the smallest changes in his health. That shift isn’t just personal. It’s structural. It’s societal. And it’s happening everywhere.
Adults with intellectual and developmental disabilities are living longer than ever before. In 1950, their average life expectancy was 66 years. However, by 2007, it had increased to 78 years. This number only continues to grow. This is an incredible achievement.
However, it also highlights a reality that has long been ignored. The number of adults 60+ with intellectual and developmental disabilities in the United States is expected to nearly double from 650,000 in 2000 to 1.2 million by 2030. Meanwhile, over a quarter of caregivers are already 60+. Parents who dedicated their lives to caring for their children decades ago are also aging with their own health issues and constraints.
And the organizations that could help fill the gap are barely staying afloat. A report published this past fall found that 88% of the providers of services for the disabled were experiencing moderate to severe staffing shortages over the past year.
More than two-thirds were forced to turn away new referrals because they did not have enough employees to serve the clients they already had. This is more than just a staffing crisis– this is a warning sign.
Hammer & NER, which supports 356 people in group homes and apartments in the Twin Cities, is already experiencing this reality. Nearly one-third of their residents are in their 40s, and several are over the age of 60. They are the first generation of disabled adults who are outliving their parents, an accomplishment that should be cause for celebration but one that requires an infrastructure that their funding does not provide.
The homes that were designed in the 1980s did not consider the needs of wheelchair users, people with dementia, or those with decreasing mobility. The staff that was hired was not equipped to handle the challenges that come with aging. The money that was allocated was not designed to provide long-term care.
Hammer & NER has recently begun a $5 million fundraising campaign to renovate and upgrade homes, increase salaries, and provide high-level training for staff. They have already raised $3.5 million. Much more is needed.
It’s something that parents like Joel and Mary Amundson know all too well. Their daughter Sarah, now 45 years old, survived a malignant brain tumor and a stroke. Years passed with her thriving in her Hammer Street apartment.
But now, her dementia is limiting her world. Joel and Mary, in their late 70s, are watching their daughter slip away with the pain that only long-term caregivers and families know.
They are relieved that their daughter gets the care that she needs, but their daughter’s needs are increasing. Unfortunately, at the same time, the system that supports her is strained.
Their hope is this: to see Sarah live as fully as possible, for as long as possible. It shouldn’t be a hope, should it? It should be a guarantee.
We can’t ignore this. We can’t wait for crisis placements, emergencies, or families who are at their breaking points. We need more funding, competitive wages for direct care staff, modern homes with modern infrastructure, and staff who are trained to care for disabled people of all ages. We need leaders who understand this isn’t a choice; it’s imperative. It’s a matter of morality, dignity, and its absence.
People like Mickey and Sarah do not require anything extraordinary. They need care that honors their humanity. They require stability, continuity, and the opportunity to age in an appropriate setting, with the same dignity we all require. And that is something that communities across the country should be able to provide.
Sources:
Caldwell, Joe, and Joshua Gladstone. “Bridging Aging and Disability Networks to Support Aging Adults With Intellectual and Developmental Disabilities and Family Caregivers.” Public Policy & Aging Report, vol. 35, no. 2, 2025, pp. 37–42. Oxford Academic, https://doi.org/10.1093/ppar/praf003.
Ireland, Nicole. “Canadians with Down Syndrome Live Until 60 on Average, Study Finds.” Global News, Global News(Corus Entertainment Inc.), 16 July 2025, https://globalnews.ca/news/11290378/canada-down-syndrome-longer-life-premature-death/
Walsh, James. “As People with Disabilities Live Longer, Twin Cities Facilities Rework Services.” Star Tribune, Star Tribune Media Company, 28 Dec. 2025, https://www.startribune.com/as-people-with-disabilities-live-longer-twin-cities-facilities-face-more-demand-for-services/601543798.