MNSCIA member, Rob Wudlick, recently represented Minnesota at the 2014 Roll on Capitol Hill in Washington, DC. Here are his thoughts on the important event:
Public policy affects the lives of disabled more than most populations in our society. Since my injury, three years ago, I have been actively working in Minnesota to improve spinal cord injury research and access to therapy and fitness for the disabled through public policy. This spring, the Minnesota Spinal Cord Injury Association invited me to attend United Spinal Association's 2014 Roll On Capitol Hill, a gathering of those with spinal disorders who are interested in government laws that affect those with spinal disorders.
Meeting many new folks from across the nation representing their local chapters of the NSCIA was encouraging and insightful to see what different groups are doing in their communities, from having monthly lectures to adaptive sports equipment rentals. Learning the different levels of services from state to state and the challenges that some face, was also interesting.
Listening to the guest speakers describe the bills they care about and represent was extremely eye opening. From the ABLE Act, that allows for more savings for education, transportation, and medicine for SSD receivers, to the energetic League of Bicyclists, promoting the Bike & Pedestrian Safety Act, which sets national standards for sidewalk curb cuts, no stairs on paths, and trails that connect, was informative and motivating.
Tuesday, we hopped on the Metro, DC's subway system, and surfaced a few blocks from the Nation's Capital. With seven visits to Representatives and Senators in one day, each meeting on opposite sides of the Capital, about a mile apart, we were in a constant scurry finding our way through the labyrinth of tunnels and trains under the Capital. While describing the challenges of living as a quadriplegic, one could realize that our able bodied representatives and aides had no idea of pressure sores, bladder issues, transportation needs, and other problems that affect our daily lives. Seeing the compassion and change of heart come out from their eyes and realizing the next time they look at someone in a wheelchair or a bill that affects the disabled they will have more knowledge and understanding of the policies they enact.
This conference opened my eyes to the needs and political headway being done for those who live with spinal cord disorders in our nation. Meeting new friends and acquaintances from across our country was a great experience. After several very encouraging visits to legislative offices it really feels like one can made a difference. Politicians from both sides of the aisle want common sense practical legislation that helps those who need it most. However, it's important to get your voice out, because in a political climate where budget cuts are being made it's really easy to make small changes in a big system that politicians may not be aware of that affect many of those who need it most. It will be interesting to see what policy changes will happen in the next year and exciting to attend next year's 'Roll on Capital Hill'.
Complex Rehabilitation Technology Bill: As a consumer I was not aware of a lot of care issues that have a giant impact on those who need special assistance. Over the past few years the Complex Rehabilitation Technology Bill has made some headway. By creating specific insurance codes for advanced wheelchairs, about 8% of all chairs, many of which the chronically disabled use, this bill will make it faster and easier for therapists and insurers to provide specialized wheelchairs and equipment for those who need it. This bill struck a resonate chord with me as it allows for preventative measures. When I first suffered my injury I was given an inadequate seat cushion that could only be upgraded until I developed a pressure sore that took three weeks to heal, this bill will change that.
The ABLE Act: This act will make it easier for those who are on Social Security Disability benefits to save more funds for education, transportation, and medical supplies. This act will also make it easier for those on SSD benefits to transition back to work.
The Bicycle & Pedestrian Safety Act: When a bunch of athletic energetic jumpy ladies promoting by circle safety show up at a spinal cord injury convention, one may wonder why they are there. Promoting The Bicycle & Pedestrian Safety Act goes hand in hand with handicap safety on the streets. By setting minimum standards, such as curb ramps, trails and sidewalks that connect, and eliminating stairs on sidewalks for federally funded trails, sidewalks, and bike lanes it will open more safe access for those with mobility issues.
Fitness Funding: Fitness has been a major focus of my work over the past few years. Being a participant in the ABLE program at Courage Kenny Rehabilitation Institute, part of the Neurorecovery Network, Christopher and Dana Reeves Foundation has given me the experience to understand the challenges that disabled folks come by when trying to gain access to therapy and fitness. Creating insurance codes for advanced therapy and fitness and possibly creating a program for those with special needs would improve well being for many lives and lower healthcare costs.
National Institute of Health's priority disease research list: Including spinal cord injury on the National Institute of Health's priority disease research list will open more funds and expedite research for restorative treatments. These actions can improve quality of life for many. By increasing the $94 million appropriated by the NIH out of a $30.3 billion annual budget this will motivate more scientists to enter the field of spinal cord neuroregeneration, alleviate budget cuts to existing labs, and provide funding so meaningful clinical trials can actually happen.