Will the Pioneer Generation become the Generation in Crisis?

Is the aging caregiver crisis just around the corner?

Her passing set in motion a cascade of decisions that triggered deep thought about my passing and preparation for when, as one of my fellow special needs parents says, “We fall off our perch.”

The Problem.

In the U.S. today, there are nearly one million households where adults with I/DD live with caregivers 60 or older. Nationwide, half of caregivers are older than 50, and 10% are 75 or older. Older caregivers spend more hours providing care than younger caregivers. According to the Family and Individual Needs for Disability Supports (FINDS) survey conducted by The Arc in collaboration with the University of Minnesota, 52% of caregivers spend at least 40 hours a week supporting their family member with I/DD—nearly double what children caring for aging parents and spouses reported in a recent National Alliance for Caregiving/AARP study.

The Story. 

 There are transitional times when life puts you into a rocket ship and propels you toward an uncertain future. On May 17th, my birthday, my mother died. It was one of those expected yet unexpected moments.

Mom had just celebrated her ninety-fourth birthday a month ago. She was still driving and living in our childhood home, still cleaning it, spotless as always.

Over the last six months, my sister and I began to see her slow down. Mom slept more and declined more invitations to go out for coffee and a Duffy Roll. She was just happy to see you. If you brought food, all the better.

There had been other times when her health concerned my sister and me, like when Mom had undiagnosed Listeria and refused to go to the doctor. Her life hung in limbo for ten days as she willed herself well, eating only watermelon for hydration.

Or when Mom became ill not from COVID-19 but from a respiratory infection and didn’t get out of bed for days. Somehow, she always rallied.

We thought it might happen this time, even when she told us this time was different.

She Fell Off Her Perch.

Her passing set in motion a cascade of decisions that triggered deep thought about my passing and preparation for when, as one of my fellow special needs parents says, “We fall off our perch.”

Mom made it as smooth as possible for my sister and me as co-executors of her estate. The Beneficiary Deed of Trust Upon Death made the ownership of her home transfer seamlessly; just taking a simple five-minute trip to the City and County building took care of it. If only it were this simple for me and my family.

Phone calls and emails took care of Mom’s bills. My sister and I were co-signers on her bank accounts, making that transition effortless. Besides losing her, the hardest thing to do was manage her home until it sold.

Stepping into my seventh decade and after Mom’s passing, I realized it is time to prepare to pass the torch of caregiving for my daughter with IDD to someone else in a few years.

But what happens when there is no one to pass the torch to? More and more, the standard thought has been when a special needs parent passes, the sibling of the special needs family member will pick up and take over.

“The System” appears to assume a parent’s decades of experience navigating complex system transfers like a beneficiary deed to someone else. It doesn’t. Many siblings are unprepared or unwilling to care for an aging sibling with special needs in an ever-increasingly complicated system and their parents.

The Assumption.

Why do we assume the family steps into caregiving or supporting a family member with disabilities?

Since the 1950s, special needs parents have been reluctant to put family members into institutional care and began keeping their children at home and starting community-centered programs. The 1960s horror of Staton Island Willowbrook Institution fueled the effort to build community-based supports, which grew into community-based waiver programs over the decades.

The Invisible Support

Because it was the 1960s, many mothers still did not work outside the home in paid work, but they worked hard for their family members, helping to build the education and rehabilitation system today. As our knowledge grew in customizing person-centered services, Baby Boomer families believed in individual supports in the community, such as educating their children in regular education with special education support, helping their family members work, own property, and become vibrant citizens in their communities of choice.

Unfortunately, much of parents’ work is invisible to the professional side of the system. Parents are much like fascia is to the human body, which until recently wasn’t even recognized as a primary organ. Moms like me are the connective tissue that wraps around the system, the services, the paperwork, and the person with a disability.

It Works Until It Doesn’t.

t all works well when we are young and flexible, but as we age, like fascia, some of us can lose our ability to keep up with the rigor of working in a system that grows more complex by the day. The amount of time needed to keep funding flowing for our family members grows each year as staffing concerns grow and systems change.  What happens when this fascia weakens, even fails—who becomes the connector?

When one grows older, we seek medical services. When a special needs parent grows older, we primarily seek financial guidance, which does not necessarily include a map to navigate the system and maintain the level of support their family members have come to know.

More attention is needed to solve the problem of who becomes the fascia, the connector, the supporter, and the messenger in supporting an aging adult with disabilities whose health may peak in their early adult years.

Case managers used to be a source of support until families found each season brought a new crop of young case managers who typically leave within months.

In the future, we are unlikely to see the quality, skill, and experience we knew as we moved into supported living decades ago. New case managers do not understand complex waiver programs and the essential values like inclusion, employment, and financial prosperity for individuals with disabilities. Our recent experience with case managers who last months, not years, validates this concern.

So then, what? Every problem has a solution if you have the right people together at the table.

More to come in the August blog post.