Archive for month: May, 2025

Medicaid has been a lifesaver, literally. Both for our severally disabled daughter Nikki, who lives in a house run by a Medicaid-funded agency, and for us as a family. Without Medicaid, it is impossible for us to even comprehend how we would care for her, while, as aging parents, we have our own real-life challenges with age-related illnesses and affording our own medical care.

When our daughter, Nikki, was diagnosed with Rett Syndrome at a very young age, we both had careers we were pursuing, and her older sister was a typical 5-year old kid. When she wasn’t in school, she was learning new skills or hanging out in my wife Karen’s restaurant.

Our family health insurance would not cover the care we needed for Nikki. It became clear that to provide Nikki with the attention and support she needed, the restaurant had to be sold, and Karen would have to dedicate herself to caring for Nikki.

Rett Syndrome is a rare, neurodevelopmental disorder that primarily affects girls. It is characterized by a period of normal development, followed by regression in several areas, including motor skills, cognitive function, and intellectual ability. What we didn’t know, which would be painful to experience, was that a couple of years later, Nikki would lose all of her acquired language skills. We still can hear that voice in the back of our minds, 28 years later.

In the beginning we did our best on one salary, which was very difficult. Karen developed a circle of caregivers who would come to the house and provide a range of services, including PT, OT, Speech and movement therapies. It was obvious that Nikki had to be living in an agency setting where she would be watched over 24 hours a day, and that she would have the age-appropriate interaction she would need. She thrived on the kind of social interaction we could not give her at home. Our financial situation was becoming more challenging, and our ages were becoming more of a problem.

When Medicaid finally approved a home placement at The Arc of Rockland for Nikki, she finally became engaged. She had a circle of other girls her age living in the same house, under 24-hour supervision. She had all her therapies at the facility and came home most weekends. This has been the case of 17 years. Without the support of consistent therapists, who came to understand Nikki even though she is non-verbal, she would not be the person she is today (generally happy, given her struggles). Nikki lights up the room as she walks slowly in with a care provider at her side, directing her. Oh, those eyes!

If Medicaid was no longer funding her agency, Nikki would lose all interaction with her friends. We would not be able to afford private therapy sessions, and she would regress in skills as simple as walking and using her hands, which are limited in their use even now.

Perhaps equally importantly, we are now elderly and suffer from our own medical issues. Even getting Nikki on and off the toilet would require every ounce of strength from our bodies.

It is unconscionable that government funding for our society’s most vulnerable population is in the crosshairs of politics.