My name is Joey Carlson and I serve on the Minnesota Spinal Cord Injury Association board of directors. I had the pleasure of joining Rob Wudlick and Thomas Cloyd at this year's Roll on Capitol Hill (ROCH). We met with legislators, learned a lot, and made some great connections!
I wish every single one of our members could have been on Capitol Hill with us. But since a lot of you couldn't make it, here is a great recap and a few thoughts on this year's festivities.
I wish every single one of our members could have been on Capitol Hill with us. But since a lot of you couldn't make it, here is a great recap and a few thoughts on this year's festivities.
Rob, Thomas, and Joey with Amy Klobuchar
Rob Wudlick’s Roll on Capitol Hill 2015 Experience and Summary
This year's Roll on Capitol Hill (ROCH), presented by United Spinal Association, was a great opportunity to build effective advocacy skills, as well as help those in wheelchairs get more of what they need from the government. Three policies were the priority for this year's ROCH: Complex Rehabilitation Technology, a Safe Streets Act, and maintaining and improving Medicare and Medicaid benefits for those with disabilities. Another personal focus of mine was to increase funding levels for the National Institution of Health and ask for policy reform for medical research.
Rob, Joey, Thomas, and Elizabeth (Thomas's sister) enjoying Washington D.C.
The Complex Rehabilitation Technology Act (HR. 1516, S.1013) (CRT) is a very important issue which affects almost everyone who spends a lot of time in a wheelchair. I even had the honor to talk about this bill as a consumer on a panel during the conference. Several years ago it was easy to get insurance approval for custom wheelchairs. Then the government cracked down on several suppliers who were taking advantage of the system. Since then it has become increasingly difficult for therapists and doctors to get wheelchairs for their patients who need them. This bill will create insurance codes for Medicare (the golden standard of healthcare insurance) which will make it easier to approve and deliver these custom wheelchairs. The estimated cost of this bill is around $5.7 million per year, which is pocket change at the federal level and doesn't take into account preventive maintenance for people who get skin breakdown if they are put into the wrong chair or given substandard equipment because they don't have access to anything better.
Joey and Thomas watch as Rob participates in a panel on the CRT bill
The Safe Streets Act (HR 2071) sets standards for curb cuts in sidewalks and other policy standards that ensure pedestrian, bicycles, and wheelchairs have safer access around sidewalks and streets.
Of course it is important to ensure that Medicare and Medicaid rights are protected and improved for those with disabilities. This is the lifeblood of the majority of the community living with disabilities. With many states having successful custom state Medicaid programs, United Spinal recognizes the need for expansion and flexibility of these state programs that work with Medicare.
Medical research for functional recovery is very important for myself and many others with spinal cord injuries (SCI). Not having the freedom to live independently and managing serious health problems associated with SCI have are devastating to my quality of life. There are several bills alive in congress which will help those with SCI’s regain function and improve their health through medical technological breakthroughs.
The 21st Century Cures Act (HR. 6) has many policy improvements that will make it easier for research to pass through the research approval pipeline. There is also legislation which returns NIH funding to normal levels. This is incredibly important since appropriations for SCI research dropped from $94 million to $80 million in the last year. Another bill that would help coordinate and streamline medical research is the Enhancing the Stature and Visibility of Medical Rehabilitation Research at NIH Act (HR. 1469, S. 800). One more helpful bill for research innovations is the Regenerate Medicine Promotions Act of 2014 (HR. 4494, S. 2126).
Of course it is important to ensure that Medicare and Medicaid rights are protected and improved for those with disabilities. This is the lifeblood of the majority of the community living with disabilities. With many states having successful custom state Medicaid programs, United Spinal recognizes the need for expansion and flexibility of these state programs that work with Medicare.
Medical research for functional recovery is very important for myself and many others with spinal cord injuries (SCI). Not having the freedom to live independently and managing serious health problems associated with SCI have are devastating to my quality of life. There are several bills alive in congress which will help those with SCI’s regain function and improve their health through medical technological breakthroughs.
The 21st Century Cures Act (HR. 6) has many policy improvements that will make it easier for research to pass through the research approval pipeline. There is also legislation which returns NIH funding to normal levels. This is incredibly important since appropriations for SCI research dropped from $94 million to $80 million in the last year. Another bill that would help coordinate and streamline medical research is the Enhancing the Stature and Visibility of Medical Rehabilitation Research at NIH Act (HR. 1469, S. 800). One more helpful bill for research innovations is the Regenerate Medicine Promotions Act of 2014 (HR. 4494, S. 2126).
A few thoughts from Thomas on ROCH 2015
Thomas and his sister with Al Franken
Last week I had the Great opportunity to represent the Minnesota Spinal Cord Injury Association at United Spinal’s Roll on Capital Hill (ROCH) in our country’s capital. I was joined by Joey Carlson and Rob Wudlick . Rob already wrote a most eloquent and informative post about the goings-on at this conference. I am sure that many of you dislike redundancy as much as I, so, I will only augment one aspect of our trip Rob briefly touched on. We are our own advocates.
All the steep curb cutouts, the hand burning declines in the capital tunnels, and even that awkward dance when there’s too many wheelchairs in a congress persons office are made worthwhile knowing we affected change on a national level. After over 100 SCI advocates met with their Senators and Representatives, more than 75 new legislators declared their support for the CRT bill (Custom Rehabilitation Technologies – see Rob’s post for details). I don’t know the breakdown between the House and Senate, but those numbers are significant. That is tangible proof that our Government will listen, we just need to get there and say something. That is where you, me, her, him, step in. We are always moving forward but going to an event such as ROCH is an energetic reminder that we have the power. This is the message I want to convey to those who were not able to come to Washington DC, we control our destinies.
As you can sense, I am ecstatic to see federal level Government being responsive to our needs. Add on the dedication of our larger spinal cord injured community and I am more hopeful now than I have been a long while.
All the steep curb cutouts, the hand burning declines in the capital tunnels, and even that awkward dance when there’s too many wheelchairs in a congress persons office are made worthwhile knowing we affected change on a national level. After over 100 SCI advocates met with their Senators and Representatives, more than 75 new legislators declared their support for the CRT bill (Custom Rehabilitation Technologies – see Rob’s post for details). I don’t know the breakdown between the House and Senate, but those numbers are significant. That is tangible proof that our Government will listen, we just need to get there and say something. That is where you, me, her, him, step in. We are always moving forward but going to an event such as ROCH is an energetic reminder that we have the power. This is the message I want to convey to those who were not able to come to Washington DC, we control our destinies.
As you can sense, I am ecstatic to see federal level Government being responsive to our needs. Add on the dedication of our larger spinal cord injured community and I am more hopeful now than I have been a long while.
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