Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

Life is such a magical thing. Our beautiful son, Ryan, was born on September 4, 1982. Due to my having toxemia, he was born premature, with a birth weight of 2lbs, 4 ounces. His beginning was very difficult due to his early birth. He suffered with bleeding in the right side of the brain that affected his left-side motor and cognitive skills, resulting in a diagnosis of cerebral palsy, a visual/spatial relationship deficit, and sickle cell anemia. The early stages of his life were filled with pain from many sickle cell crises, frequent hospitalizations and ongoing doctor visits. We managed the hospitalization stays with the support of family and friends. Ryan always had someone with him to ensure he was receiving the care and support he needed.

When Ryan first attended school, a special preschool program helped him enhance his delayed development. During these growing years, we always encouraged and supported him to try the new things he encountered. Limiting him has never been an option for our family. From ages 5 to 11, he attended a District of Columbia special education school. While it was not always easy dealing with the school system, we received their support in getting Ryan assistance including speech, physical, occupational, and perceptual therapy. 

We couldn’t imagine what life had waiting for us as Ryan entered middle school and was integrated into regular classrooms. We had the support of the principal, classroom teachers and the resource teacher that allowed him to adapt to a regular school setting. He was paired with a classroom buddy who helped him navigate the school space, one-on-one instructions with the resource teacher in reading and math, and a principal who was willing to assist in getting needed resources that were not available at the school. Being involved in this supportive learning environment helped Ryan have great experiences we could not foresee. He learned how to work with groups of people, complete a science project, join a Boy Scout troop, and make friends with kids in the community. His educational life was no longer just a world for persons with disabilities.

Ryan’s high school years gave him so much pride in who he was. He attended regular classes with an aid, school dances, sports activities, the prom, and graduation. Ryan received support to work through the Bridges program, which trained him to work in a competitive job in the community.  We supported Ryan by helping him work with the program and his counselor, Mr. Smith, and also by helping him learn how to dress for the job, complete the job application, and be interviewed. We also made sure he took responsibility and pride in his achievements. When he would say, “Mr. Smith got me the job,” we’d remind him that he got the job on his own, with help from Mr. Smith.  With support from people like Mr. Smith and so many others, including his employers, Ryan has been successfully employed for 19 years. Recently, Ryan’s manager gave him additional responsibilities because of his great work.  

In 2003, Ryan exited the public school system. We applied for support services with the local government agency.  The agency told me we must get guardianship over Ryan for him to receive their services. This upset us because Ryan had always been independent and made his own choices, with our support and help from others. I asked them, “Why would I need guardianship for my son when we have always cared for him and will continue to care for him?”  They told us that was their practice: To get services, you must get guardianship. Because we had no choice, we applied to the court and became Ryan’s guardian. We knew this was not needed because our family has always had a network of family and friends to support and encourage Ryan. We knew that Ryan should not have to lose his rights to get the services he needs. Our goal was always to help Ryan be independent.

Our experiences with the court system were frustrating because the court seemed more interested in our filing reports than on Ryan and what he needed to be independent. When we asked the court to end the guardianship in 2007, a lawyer met with us for less than two hours. He did not visit Ryan’s work or any of the programs where he volunteered, and did not observe Ryan making his own decisions with our support. The court did not end Ryan’s guardianship.  

Our family followed Jenny Hatch’s story about using Supported Decision-Making and ending her guardianship (see http://www.supporteddecisionmaking.org/impact-stories/jenny-hatch).  Ryan said, “I could do that.” He made it clear that he did not want a guardian and we, as we always had, did not want him to have a guardian. We contacted Quality Trust for Individuals with Disabilities, who represented Jenny.  That’s when we “officially” began using Supported Decision-Making, even though we had always supported Ryan to make his own decisions (we just didn’t call it Supported Decision-Making). For two and a half years the legal team of Jonathan Martinis and Morgan Whitlatch worked on preparing an appeal on behalf of Ryan to show the court that Ryan does not need a guardian because he uses Supported Decision-Making. On October 6, 2016, the court terminated Ryan’s guardianship. Later, Ryan signed a Power of Attorney protecting his right to use Supported Decision-Making.  

Life is so magical. Our journey helped us show the court and so many people that Supported Decision-Making can help people with disabilities have control of their lives and make their own choices, without a guardian. Today, Ryan continues to enjoy making his own life choices and traveling, working, cooking, going to WWE wrestling events, movies, and concerts without having to report it or get permission from anyone. As my son says, “Don’t judge me until you get to know me.”