Message to Our Legislators on Protecting Persons with Disabilities

                 Right now, families of children with special needs are under attack in multiple ways. Will you protect the most vulnerable people in our society? Or are you determined to withdraw the support that is necessary for persons with disabilities to survive and for their families to keep their heads above water?

                My wife and I have experienced this firsthand. Our oldest child was born in 1980 with Tuberous Sclerosis. The most terrifying aspect of the disease is brain tumors. As a baby he suffered multiple grand mal seizures per day. Our physicians, who were wonderful, predicted that he would not live, and that if he did he would never walk or talk. We both persevered. My wife quit medical school for a year, and I, a licensed lawyer, took less demanding work so I could stay with him.

                Multiple studies show a direct connection between family income and the presence of a child with disabilities. This is the result of a number of interrelated factors:

·         The average household income of a family with a disabled child is only two-thirds the household income of a family with healthy children;

·         Parents of a child with disabilities spend more money on their disabled children, and spend more time and effort on those children, than on their healthy children;

·         Parents of a child with disabilities are 30% more likely to get divorced.

Our oldest is 44 years old now, and we are 75. He is developmentally disabled, but he volunteers in programs to help other people who are more disabled than himself. We didn’t divorce, we had three more amazing children, and we live a comfortable life, but we absolutely earned far less over our careers than if we had not dedicated ourselves to his well-being.

For decades my wife and I conducted adaptive recreation programming in our community, serving dozens of children and adults with developmental disabilities. We grew to know those families intimately. As we age many of those families are experiencing unbearable levels of financial and emotional stress.

What is the response of the present administration to this crisis? 

• Cut Medicaid, which not only pays for housing, daily care, and medical care for persons with disabilities, but which also pays for medical insurance for so many of our families living in poverty;
• Cut special education, which depends entirely on the federal Department of Education for funding that the states do not provide and for regulations that the states would now be free to ignore;
• Cut NIH grants and research, which seek treatment or a cure for so many of the conditions that cause disability.
• Cut Social Security, including programs such as SSI, SSDI, and DAC that directly serve persons with disabilities.

Are you going to stand with persons with disabilities and their families? Or will you vote to abandon us?

“A civilization is measured by how it cares for its helpless members.” As one of our leaders, that is how you, too, will be measured.