4/20/26 - Caregiving, and a look back at winter

Good afternoon!

I have the feeling that we are going to be hearing more about home care in the next year or two. And not because we will be fighting for the huge increase in funding we need, but because we are going to have to make the most basic arguments for home care all over again, like it was the late 1980s instead of the mid 2020s. At least Spring is here.

ANCOR Issues Response to Robert F. Kennedy, Jr.’s Concerning Remarks About Home- and Community-Based Services

Sean Luechtefeld, ANCOR - April 17, 2026

"Providing additional support options for people with disabilities allows family members to remain in the workforce and continue to earn wages. Without the option to maintain employment, family members lose thousands of dollars annually in unearned wages. Additionally, a system that relies on unpaid family caregivers leads to mounting out-of-pocket expenses and the physical and emotional strain of caregiving for those family members, resulting in a greater likelihood that they will need additional support through public assistance themselves."

For decades, this has been the usually unspoken but potentially most devastating argument hanging over the whole movement for home care a key to independent living with safety, dignity, and community integration. "Why," the argument goes, "should taxpayers foot the bill for hired home care workers for elderly and disabled people, when really, their families should be taking care of them?" There are a dozen practical, financial, and quality of life reasons why. But unfortunately, this rely on family idea fits with general vibes of nostalgia for an imagined, idealized past when families naturally cared for each other – without complicated, expensive programs. Significantly, the idea also leans heavily on the confinement of women to the home and caregiving duties. It also relies on an outdated economic model in which families could provide this kind of care on one person's income, and further assumes that everyone who needs care has family to provide it. That's a lot of assuming things that we all know aren't true, and are nowhere near being close to it.

Caregivers with Disabilities: An Overlooked & Under-supported Caregiving Population

Community Living Policy Center, Brandeis University - April 16, 2026

"An estimated 36% of adult family caregivers in the U.S. are disabled themselves. In fact, people with disabilities are more likely to be family caregivers than people without disabilities."

In fact, as this study shows, families provide much of the care for elderly and disabled people already. And because age and disability are so common, a lot of the people providing disability care and support have disabilities themselves. These caregivers certainly deserve praise for their devotion. But, what they really deserve a reliable break. And the people they care for deserve the choice of being supported by paid staff who aren't family, so they can have family relationships that aren't complicated by an often conflicting employer/employee relationship. Home care doesn't have to be a complete replacement for family care. But, it should be an available, affordable alternative. And at the very least home care can be a reliable source of help and respite for parents caring for children, both young and adult, or for spouses caring for partners with disabilities.

Waiting for the Sidewalks to Come Back

Sarah Levis, Power in Every Body - April 14, 2026

"And winter doesn’t just make things inconvenient where I live. It makes them inaccessible. Sidewalks that work in July stop working in February. Independence becomes seasonal."

It snowed here yesterday, in mid-April. It didn't amount to much. But, it was, (hopefully), a final taste of the most inaccessible season for disabled people here in one of the colder areas of the Northern hemisphere. I relate so much to Sarah's account of living with disabilities in wintertime Ontario, Canada. One of these days I may share my experience this past Christmas Day, slipping and falling trying to get into my car and needing help from a neighbor to get up again. Let's just say that the one good thing about winter weather is that when you fall on a bed of mushy, obstructive snow, you at least don't hit very hard. I'm grateful for Spring, in more ways than one.

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