The tax bills that are being considered for reconciliation would ruin my family.
It would ruin the life of my son, Daniel, an adult living with severe autism, and anything that affects his life affects mine, too.
Families such as mine live in angst, as resources that support people with long-term care needs are threatened by across-the-board cuts. It is unconscionable that a bill that could eliminate these services and destroy the lives of the elderly and disabled was rushed through the House and Senate.
This bill affects all Americans; it deserves a thorough vetting, with full transparency and comprehensive scrutiny, including public hearings representing all stakeholders.
My son lives in a small group home in a peaceful neighborhood of tiny ranches near Bates College. He is non-verbal, communicating minimally with a voice output device, picture communication book, a few signs and nodding and shaking his head.
Dan has bi-polar tendencies and a seizure disorder, yet he takes care of his own needs with prompting, and he does typical chores. What is most remarkable is that, with supports, Daniel is charming and gentle.
Once a week, he collects excess food at Bates and delivers it to the Trinity food pantry. Weekdays, he enjoys delivering food to Meals on Wheels clients. But inadequately supported, or when in pain, he loses the skills that were so difficult to acquire, including eating with utensils, wearing clothes and using the toilet. He communicates with aggression. He becomes uncivilized, completely unlike the supported version of Daniel, who contributes to his community; people who know the supported Daniel tell me he is a joy.
I am 61 years old. When I was young, people like Daniel were hidden from society in institutions like Pineland, with its 50-to-1 staffing ratio and deplorable, inhumane conditions.
Pineland closed in 1996.
Over my lifetime, federal laws improved the lives of people like Daniel by guaranteeing them a free and appropriate education and supported community inclusion. Those policies led to increased understanding of this population’s ability to learn, grow and contribute. I have experienced this upward progress first-hand with Daniel, and I am grateful.
The Senate tax cut bill reportedly would add $1.5 trillion to the national debt over 10 years. People with disabilities cannot pay that debt, but I fear that they will, because the Home and Community Based Service waiver system that supports adults with developmental disabilities is an “optional” Medicaid program. But to Dan and others with intellectual disabilities and autism, lifelong treatment is not optional, it is lifesaving.
They rely on Medicaid to provide evidence-based treatment — from early intervention and educational access, to supported employment and community integration — throughout their lives. Without it, it is easy to understand how 50 years of progress could disappear.
My fear is real because the stakes are so high. Group homes like Daniel’s are already closing in Maine because they cannot hire enough staff at the low wages they are forced to pay. Some of those residents have ended up homeless, in the hospital and in jail. Reverting to institutionalization, or even larger group homes, would cause Daniel to regress and lose the wonderful progress he has made — progress that was unheard of decades ago.
What would happen to Daniel if his home closed altogether? Who would care for him? I am no longer able to.
Sen. Angus King and Rep. Chellie Pingree opposed the tax bill, and I thank them. Recently I watched Sen. King explain how, if the bill passes, the interest on the national debt will skyrocket to total the entire federal discretionary budget. Passing it without discussing who will pay for it is reckless. I fear it will be done at the expense of fragile, defenseless people like my son, Dan. My heart aches at the thought.
Rep. Bruce Poliquin has long opposed deficit spending, yet he eagerly supported this bill. Sen. Susan Collins courageously saved the country voting against a horrendous health care bill, yet she rushed to support this tax bill. I urge them to do the right thing now and oppose the legislation in reconciliation.
Do not let this become the law that ruins families like mine.
Kim Humphrey lives in Auburn.
Kim Humphrey
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