Maine Voices: reconciliation bill seems like my family’s last chance
As Congress debates rhetorical nonsense, as if caregiving is seen as “infrastructure,” I enter my 34th year as an unpaid family caregiver. When they haggle over how to decimate the reconciliation bill, Congress talks about my son, a disabled adult who can’t 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 there is no system in place to take care of my son when I’m gone. Our story takes place in thousands of homes across Maine.
U.S. Representative Jared Golden didn’t ask me, but I have a lot to say about the low value our government places on unpaid family caregivers like me and our underpaid professional caregiver workforce. residence. President Biden’s bill, which lawmakers are trying to cut by more than half, could save families like mine if they choose to fund it in full.
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 US president has spoken of caring for people with disabilities in such a comprehensive way, and it feels like my family’s last chance.
I spent decades underemployed: for eight months when my husband struggled to survive a rarely curable form of cancer; while taking care of my twins, who were born prematurely and in need of high-tech medical care even after they returned from the neonatal intensive care unit, and providing 24-hour care to my mother during the two last years of her life, as she endured complex medical conditions and physical disabilities.
We have been running it for a while. While my children were of school age, I had the help of home nurses, which allowed me to work and maintain our health insurance. After my son, who has a developmental disability, graduated from high school, I became his caregiver most of the time. For a while, I was able to hire direct support professionals because of his waiver of self-managed home and community services.
But wages have not kept up with the cost of living, and provider organizations are no longer able to recruit enough workers to meet the needs of Mainers with intellectual and developmental disabilities and autism. Parents have to give up their jobs, sacrificing both their current income and their future social security, in order to care for their adult children. My son receives half of the hours he is entitled to, which means I care for him almost 24 hours a day.
Maine has tried to address this crisis by increasing the salaries of direct care professionals, but it’s a band-aid at best. It will not solve the systemic problems plaguing Maine families. It will not elevate caregiving to the level of professionalism required to serve people with more difficult disabilities, like my son. This bill is a real solution – if Congress funds it.
The bill signals a commitment to supporting the needs of American citizens in ways not seen since the New Deal, with child care, health care and home care being the backbone of any human society and reliable economy. Caregivers accompany people. Why does our country place so little value on American families like mine?
Unfortunately, not all senators and representatives in Maine have made a commitment to fully fund the bill.
Supporting those in need of care is not only human, but also economically sound, as it allows families to work and earn money, pay taxes and put money back into the economy. Multiply my story by the thousands of Maine families like mine, and maybe my representative will understand the devastating economic loss of not supporting people with disabilities. Although expensive, the real cost of not financing the bill is even higher.