Maine Developmental Disabilities Council

by Maggie Hoffman

My adult son, who has disabilities, cannot live the life he deserves because so little support exists for people like him. This legislation signals a commitment to providing it.

While Congress debates rhetorical nonsense, like whether caregiving qualifies as “infrastructure,” I enter my 34th year as an unpaid family caregiver. When they haggle over how to decimate the reconciliation bill, Congress is talking about my son, an adult with disabilities who cannot live the life he deserves because there is so little support for people like him. And they’re talking about me, a 65-year-old Mainer who is terrified of dying because I know that no system is in place to care for my son when I’m gone. Our story is playing out in thousands of homes across Maine.

U.S. Rep. Jared Golden hasn’t asked me, but I have much to say about how little our government values unpaid family caregivers like me and our underpaid professional home care workforce. President Biden’s bill, which lawmakers are attempting to cut by more than half, could save families like mine if they choose to fully fund it.

When Americans talk about health care, people with disabilities are never even at the table. Until now. This is the first time in a generation that a U.S. president is talking about caring for people with disabilities in such a comprehensive way, and it feels like my family’s last chance.

I’ve spent decades underemployed: for eight months when my husband fought to survive a rarely curable form of cancer; while caring for my twins, who were born prematurely and needed high-tech medical care even after they came home from the neonatal ICU, and providing round-the-clock care to my mother in the last two years of her life, as she endured complex medical conditions and physical disabilities.

We made it work for a while. While my children were school age, I had the help of home care nurses, so I could work and maintain our health insurance. Once my son, who is developmentally disabled, graduated from high school, I became his most-of-the-time caregiver. For a time, I was able to hire direct support professionals through his self-directed home- and community-based services waiver.

But wages have not kept up with the cost of living, and provider organizations are no longer able to recruit enough workers to support the needs of Mainers with intellectual and developmental disabilities and autism. Parents have to give up work, sacrificing both their current income and future Social Security, in order to care for their adult children. My son receives half the hours he qualifies for, which means that I provide almost round-the-clock care for him.

Maine has attempted to address this crisis by increasing wages for direct care professionals, but that is a Band-Aid at best. It will not solve the systemic issues plaguing families across Maine. It will not raise caregiving to the level of professionalism required to serve people with more challenging disabilities, like my son. This bill is a real solution – if Congress funds it.

The bill signals a commitment to supporting the needs of America’s citizens in a way not seen since the New Deal, with the child care, health care and home care that are the backbone of any humane society and reliable economy. Caregivers support people. Why does our country place so little value on American families like mine?

Unfortunately, not all of Maine’s senators and representatives have committed to fully funding the bill.

Supporting those who need care is not only humane but also economically sound, because it frees families to work and earn, pay taxes and pour money back into the economy. Multiply my story by the thousands of families in Maine just like mine, and perhaps my representative will comprehend the devastating economic loss of failing to support people with disabilities. While expensive, the real cost of not funding the bill is even greater.