I have spent nearly 30 years in a field that I just fell into. It’s a fall I would gladly repeat if I had to do it all over again. When I was an undergrad at SUNY Stony Brook, I was looking for summer work and a friend of mine told me about a job working with autistic adults. I had no idea what working with that population would be like, but I interviewed for the position and I got the job. I believed I would be working with crazy people, which I can now say stemmed from my ignorance at the time. Little did I know that the experience would inform and direct my career path.
Imagine entering into a new field for what you thought would only be one summer, and instead finding yourself on the same journey some 27 plus summers later. It is a life path I never thought possible. As an undergraduate I studied applied math and statistics, and my plan was to become an actuary or a teacher. That quickly changed. Working with the developmentally disabled population has been some of the most rewarding times of my life. This is not a field you go into for a financial windfall. It’s something you have to love and get immense satisfaction from to stay in. I have experienced the growth of the participants, even in the challenging times, and I can truly say that I am doing what I was meant to do.
In my early years, I met a participant who was suicidal because his family abandoned him. When we contacted his mother, she stated that even if he drops dead she did not want to know anything about him. Hearing that broke my heart. That experience made me to realize that I had to do this. I needed to be there for those who may be rejected. I have experienced my participants going from an inability to make wants and needs known, progressing to making gestures and pointing to signs to indicate their wants and needs. Witnessing this growth made me aware of their untapped potential.
Working with individuals who are developmentally disabled there is saying, “Regardless of anyone’s disability all individuals can learn and grow.” As a caregiver, this has to be your mission and what informs and drives your passion for the work. Do we as people have the ability to learn and grow? Of course we do! Individuals with developmental disability have that same ability. It just requires more patience and dedication from caregivers to make that a reality. Over the years I have learned a lot. I have given my all to my participants, but they have given me so much more in return.
When I started in this field it was a prosperous time. You didn’t hear about agencies going out of business as they do now. Funding for these programs was consistent and plentiful. Over the past 10 years, cuts in funding for this population has increased, and nonprofit organizations have had to do more with much less. In this time of Washington belt-tightening, cuts to Medicare and Medicaid seem to be more likely than unlikely if we are to believe the political discourse. Government funding (including local, state, and federal sources) accounts for about 47% of an organization’s budget that provide services for the developmentally disabled. For organizations working with and supporting people with developmental disabilities, reduction of government funding would be like cutting off a vital lifeline that helps sustain these service-driven organizations. How will agencies be able to provide the kind of quality care that they need if those who are making decisions about funding are not considering that the people affected are people too?
A person with developmental disabilities feels, loves, cares. They have ambition and they want to be treated like they are people of value. I have two participants who want to get married and have a family. Having a developmental disability doesn’t mean they should not want the best out of life, but a dream is only attainable if you are supported to make it come true. Many nonprofit organization are worried, and should be, because of the likely budget cuts in a Trump administration. Agency leaders must sound the alarm and highlight the real human cost that budget cuts will bring about, and how those cuts will effect the lives of the over 2 million New Yorkers who have disabilities. Let’s take a stand for the vulnerable. Stand up for what is right, and in doing so we can help this population reach their full potential as human beings.