The National Down Syndrome Society (NDSS), the leading human rights organization for all individuals with Down syndrome, held their 2017 NDSS Leadership Summit October 1-3 in Washington, DC. Jamie Dolan, with his Nova Chat in hand, joined over 200 advocates from across the country on Capitol Hill, advocating to break down barriers for individuals with Down syndrome and other disabilities. A series of out-of-date laws unjustly prevents this population from living the American Dream – forcing a choice between a job and independence or risk losing their critical Medicaid benefits. (Down syndrome doesn’t stop people with Down syndrome – it’s “Law Syndrome” that holds them back.)
During the Leadership Summit, Jamie was invited to speak on a self-advocacy panel, and he spent a full day on Capitol Hill visiting the offices of his US Senate and Congress representatives. As the only person using speech augmentation, he clearly expressed his points, made possible by using his Nova Chat device.
Jamie explained that he works part time at NDSS as Assistant Information & Referral Specialist, preparing information kits about the needs and abilities of people with Down syndrome. He also volunteers at his neighborhood library, delivers lunches to homebound seniors, and is preparing for more paid employment opportunities.
Jamie talked about the importance of his work to the community and his challenges. He explained, “My dream is to work in the entertainment and food service business. My biggest challenge is when people underestimate what I can do because of my disability. With a job coach I can learn many tasks. I need support services to become more independent, but Medicaid funds are very tight. Block grants to states will threaten my supports even more.” He worries, “Without supports I will get stuck doing less than I am capable of.”
In the coming weeks, congressional leaders will announce and begin meeting on a new bipartisan effort to help the disability community tackle archaic, outdated laws that continue to prevent individuals with disabilities from seeking out meaningful, competitive employment opportunities while maintaining and improving access to high quality benefits like Medicaid. “Law Syndrome" is the clarion call to congressional leaders, urging them to join the fight to reform these complex laws. Jamie was proud to have a voice on this important issue!
-- Written by JoAnn Dolan