When I was very young, my mother worked for an agency-based group residence on Long Island. She used to tell me stories about the people she worked with and how much she had grown to care for them. Often, I would visit them with my mother, and on special occasions, we invited them to our home.
As I became more aware that people can be born with their own unique needs, my mother also shared with me that my younger brother was diagnosed with Asperger syndrome. He had a hard time initiating conversations and making friends, and he tended to keep to himself most of the time. I would always go out of my way to look out for my younger brother at school. I tried very hard to include him when I would make plans with my friends, and at times, it was challenging.
My brother had his own unique differences and deserved the same rights as everyone else. Why shouldn’t he have friends? Why shouldn’t he be included in a conversation? Why can’t he fit in? I realized that my mother intentionally raised her children to be accepting and welcoming to people with special needs, and that her plan had worked! I had grown to care for the people that she worked with, and I spent a majority of my childhood sticking up for my younger brother.
My younger brother struggled a bit throughout high school socially, but we survived, and we graduated a year apart. When I started a job in a gym as a personal trainer, I immediately began working with children with special needs. I loved to make sure that they felt empowered and strong every time they came to the gym. I enjoyed my job so much that I decided to work in a group residence for adults with developmental disabilities.
I learned more in my five years working at a group residence than I could have learned at any state university. My job was hands-on, and I spent so many hours at the house that it felt like home. My residents became like my family, and I really cared for them. I always made sure that my residents had CHOICES in their own daily lives, but I still left work feeling like I could have done more. I could not escape that feeling for five years, until I was introduced to self-determination and Consolidated Supports and Services, or C.S.S.
By chance, I had met a young man and a member of his support staff while I was out swimming with some of my residents. When I asked the staff member which agency he worked for, he replied, “This is the exact opposite of an agency.” He then went onto explain that this young man lives a self- determined life, which means that he makes his own decisions about what to do and where to go each day of the week. I was blown away! I was so intrigued because this was exactly what I was looking for over the past five years. I wanted to encourage personal choice! I wanted to be involved in a program in which every person was in charge of his or her own life.
When I later met the young man’s mother, she explained about “the person-centered plan” and the “circle of support.” When she explained that support staff professionals work with her son at home and in the community, based on his own personal choices, I knew I wanted to be involved. When I confided in her that I leave work each day wanting to do so much more, she agreed to hire me as her son’s “support staff,” and my life has not been the same since.
On my first day working, I brought a self-determined young man to a running club. He was very happy because he had made his own decision to go to the club, and I was so glad when I made it possible for him to do the things he really wanted to do!
Within three weeks, I was hired by three other families. For a whole month, I was still in shock that I could help someone advocate for themselves. For example, when one person I support asked me what we were going to do, I replied, “We will do whatever you want!” The people I support all have their own unique personalities and interests, and every day, I do something different.
On a daily basis, I work with the individuals I support on cooking meals, exercising, cleaning, job skills, reading, writing, safety, and being active in our community. I could not see myself working for people with developmental disabilities in any context outside of C.S.S. Every day, I help to empower a person with a disability, and foster their independence. I used to leave work feeling like I could do more, and it was the worst feeling in the world. Now, I look forward to the opportunities that my work brings for me and those I support.