Health Care For All is celebrating its 40th anniversary this year. One of the constants throughout our history is our deep connection to, alliance with and support of the disability rights community. In 1988, HCFA worked with its partners to help create CommonHealth, a program that offers health care coverage to individuals with disabilities whose income is too high for standard MassHealth coverage. In 2003, HCFA, the Boston Center for Independent Living and Community Catalyst worked with the disability rights community to help support the creation of Commonwealth Care Alliance, an innovative health care model for patients with complex health care needs. Over the past several months, we have worked with our partners and MassHealth to salvage this program after what looked like financial ruin.
What I know for a fact is that the disability community is filled with individuals from a diverse set of backgrounds and abilities – some of these individuals are more impacted by their disability than others. What is consistent, however, is the passion and grit these advocates bring to their work. They are fighting for their own rights, the rights of family members and the rights of friends, including those on the autism spectrum.
When I hear our highest-ranking health official at the United States Department of Health and Human Services describe individuals with autism as unable to contribute to society, hold down a job or even toilet themselves, I am enraged. While there are individuals with autism who are severely limited in their abilities, there are many who are thriving members of our society holding down important jobs, raising children and making meaningful contributions to our country. It is dangerous to categorically lump people with autism into one bucket – that is why it is referred to as the autism spectrum disorder – and then state that they are destroying their families’ lives.
I know this firsthand because my husband is board-certified in Developmental-Behavioral Pediatrics, a board certification the American Academy of Pediatrics (AAP) first created in 2003. Since then, over 700 pediatricians have been certified and received extensive training on, among other topics, how to diagnose and treat people with autism. Could this, Mr. Secretary, be part of the reason why we have seen a rise in cases of autism over the past two decades? With medical advancements comes greater knowledge, treatment and opportunity for individuals with autism.
How can I be so sure of all this? Because next weekend, when my husband and I go to our regular landscape shop to pick up our spring flowers, I am confident we will once again see one of his young adult patients who has autism. He will be there helping us lift heavy bags of bark mulch and making sure we have everything we need during our shopping trip. This individual with autism is making a meaningful contribution to our society, living a fulfilled life and bringing joy to his family. And no one, no matter how high-ranking in HHS he is, can convince me otherwise.
Health Care For All stands with our partners in the disability rights community and calls on Secretary Kennedy to ensure that any research he commissions on autism must be grounded in science and medicine.
Amy Rosenthal is HCFA’s Executive Director.
