Medicaid is life for my mostly non-speaking autistic adult son. He grew up in NY District 11, and at 22, is more than just a resident of our neighborhood of Bay Ridge. He has a symbiotic relationship with his neighborhood. People might recognize his smile, or even know his name. Since he aged out of school he benefits from the Self Direction Program through New York State Office for Developmental Disabilities, which provides him with an annual budget. He shops locally, often at Bay Ridge Business Improvement District establishments, where both his face and SNAP card are welcome. He’s a talented athlete, one of the regulars at a local fitness center, whose monthly fee he pays though Social Security Insurance.
At 20, he started teaching himself drawing and painting skills to battle the cabin fever so many of us felt during the COVID-19 lockdown. His initial self-taught art skills also helped him express himself when he didn’t have words to do so. Every morning, my husband and I would come downstairs, and find a painting on his easel of something he missed from his pre-COVID routine, a school bus, a subway, or a local pharmacy sign. Routine is his friend, but he understood that a big change was coming up in his life, and it seemed he wanted some control over it. Soon his every utterance ended with the words “Want to live with no parents.” The week after he graduated school, my husband found a former art professor who lives in District NY11 to give him formal lessons.
My son now rents a room in an ordinary house near his father and me. By relying on the Home and Community Based Services (HCBS) Model that is the Gold Standard for adults with his high level of need for support, his Medicaid budget allows for 24/7 Direct Service Professionals, who help him balance living on his own, with flourishing in community with familiar people. The more he grows as a person the more focus he has. His first solo art show was last year. His paintings hung beside those of other artists at a group show.
Even in normal times, services like Medicaid, Social Security Insurance, and SNAP are not easy to get or maintain. But these are not normal times. There are calls at the federal level to cut the very services that sustain the beautiful life my son is creating with the help of his family, teachers, and Direct Service Professionals—a life that balances safety with self-determination. All he has worked so hard to build could disappear with the stroke of a pen. Our own congressional representative, Nicole Malliotakis, talks of concern about cutting services for our significantly disabled adult son and people in his position. Sadly her voting record fails to match up with her words.
Speaking is so difficult for my son, that he doesn’t waste energy contradicting his words with his actions. Our member of congress would do well to emulate him.
