Medicaid matters to me because I get supportive employment that helps me at my job, I go to Day Hab, and we go out into the community and make friends. I live in an Arc house where I receive support to help me become independent. I belong to a self-advocacy of The Arc Rockland. I got sworn in as the president! I will fight every day to save Medicaid and food stamps.
I needed to have Medicaid as a child so that I could get services from the county Arc programs. It helped with medical bills that were not covered for autism support through my parent’s insurance. The programs helped me succeed in high school and be able to complete an Associates Degree. I had help with an aide and even learned how to drive. I have been able to get a job and still have some medical services and job coaching with the Arc. I would struggle without them. I don’t know where I would be without Medicaid. Please do not reduce funding for this critical program.
Medicaid means everything to me and my family. Because of Medicaid services I am able to attend a day program with my friends and instructors. We do activities in the community, and I feel happy and good about myself. I would like to continue my work at my program. I learn new things every day. If I could not go to day hab I would be alone and very sad at home every day.
I have worked in organizations that support people with intellectual and developmental disabilities for most of my career – as a Direct Support Professional, as a manager, as a trainer, and as an administrator. I took on this work originally as a “summer job” while I was in graduate studies in engineering at RPI.
Before I started this work, I had no personal connection with anyone who had an intellectual or developmental disability. I had no idea what their lives were like, or what types of support they needed. From the start, I was overwhelmed by the intensity of their needs and the dedication of those who made it their lives’ work to provide support that enables these individuals to live a life of dignity. I now know how much work is involved, and the tremendous positive impact it has.
There is no way to provide these services – to provide even a basic quality of life for people with disabilities, without public funding. These services rely almost entirely on Medicaid funding. Other sources (including charitable giving) are simply unable to meet the level of need.
I also now have a brother-in-law with intellectual disabilities who relies on Direct Support services. He requires round-the-clock support from a team of Direct Support Professionals. He cannot provide for himself, as he has minimal employable skills. Yet he is artistic, creative, musical, and his presence lights up a room.
I have done the work of a Direct Support Professional, and have first-hand experience seeing the impact of their work. It is hard to describe the challenges of the job, or the dedication of those who do this work, day after day. Yet these workers are hardly appreciated, or even noticed, by society at large. And because of the limited funding for these services, they barely earn a living wage for the work they do. I worry that it is becoming harder and harder to sustain our Direct Support workforce -and I know how much people with disabilities rely on good Direct Support staff to remain safe, healthy and happy.
There is much debate about the role of government versus individual responsibility. However, if we value human life at all – in whatever form it manifests itself, with or without disability – then I feel there is a clear mandate for society to provide for those who, through no moral failure or fault of their own, are simply not capable of providing for themselves.
History shows that without adequate funding, most of these individuals would barely survive in horrendous, inhumane conditions – or may not survive at all. Medicaid has been by far the primary means by which we have supported people with care and dignity. Anyone who has done the work knows that, if anything, more funding (not less!) is needed. Personally, I am happy to know that part of my taxes goes to provide this type of funding – I view it as a social responsibility, and an honorable thing to provide for “even the least of these.”
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 ci
rcle 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 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.
I am a life-long Long Islander, as is my family. The first time my bride Arleen and I heard the word Autism was in late 1963, 62 years ago. High school sweethearts, we had been married just two years, and our eldest son Roy was but a year old. We would go onto learn that ultimately all three of our beloved sons – Roy Jr,. Mike, and Glenn – had Autism.
We later learned we are a Fragile X Syndrome family. We made another vow to each other: our sons are going to live in their own home with us for the rest of their lives. We did just that.
Under the Medicaid waiver we were the first family in New York State to receive residential services for disabled adult children living at home. Our sons relied on Medicaid their entire lives for support and acute medical care. They were afflicted with many unique illnesses, some life-threatening, involving hospitalizations of all three.
They also had long-term care needs arising from their Intellectual and Developmental Disabilities. They participated in Day services after graduating from school, including vocational training. Medicaid enabled our youngest son, Glenn, to gain employment with the support of a job coach. He completed 20 quarters of employment and qualified for Social Security. As they aged and their needs became more complex, our sons required additional residential services through Medicaid.
Our family saved taxpayers millions of dollars in Medicaid costs by keeping our sons at home rather than a group home, but Medicaid was and is an essential part of the safe and secure quality of life they required.
