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Roll on Capitol Hill: Facing New Challenges

ROCH enables people who use CRT to demonstrate in person why their equipment is so crucial to them.

ROCH enables people who use CRT to demonstrate in person why their equipment is so crucial to them.

As some of you may have guessed, this year the Roll on Capitol Hill will be different for United Spinal Association, as we are facing both new challenges and new opportunities on a whole range of policy issues with a new presidential administration.

More than ever, it is important that we remain vigilant to ensure that our rights, access and independence are not rolled back. As we have proved in previous years — and as we did at the end of 2016 with the 21st Century Cures Act — when we all work together, we can be successful.

The 21st Century Cures Act passed both chambers of Congress and was signed by President Obama at a signing ceremony in Washington, D.C., on December 13. It was the largest bill to pass since the Affordable Care Act in 2010, and it ensured many of the causes we advocated for at last year’s Roll on Capitol Hill, including: protecting CRT; improving medical rehabilitation and neurological research; and ensuring approved prescription drugs and devices are brought to market more quickly. It also provides:

  • $4.8 billion to National Institutes of Health;
  • $1.8 billion for Cancer Moonshot to speed cancer research;
  • $1.5 billion for the BRAIN initiative to improve our understanding of diseases like Alzheimer’s and speed diagnosis and treatment;
  • $1.5 billion for the president’s Precision Medicine Initiative to drive research into the genetic, lifestyle and environmental variations of disease;
  • $1 billion in grants to states to address the opioid crisis;
  • $500 million to the Food and Drug Administration.

This June 11-14, we are celebrating the sixth year of the Roll on Capitol Hill. We’ll kick things off with a fun reception Sunday night and then dive into a full day of speaker presentations and issue education on Monday. New this year, for those who have never attended the Roll before or would just like a refresher, we will be doing a new attendee orientation to prepare for your meetings on the Hill. Also new this year, we will be capturing you on video throughout the event and interviewing you after your Hill meetings for some up-to-the minute intel. That video will be shared with all attendees on Wednesday morning. Tuesday, advocates will spend most of the day on Capitol Hill meeting with their legislators, making sure that our voices are heard.

We’ll take care of scheduling the meetings and leave the fun part, the actual meetings, to you. After all those Hill meetings, there will be a fun awards reception on Capitol Hill where we thank you, as well as our congressional champions, for all the support and leadership over the past year.

Spinalpedia’s Josh Basile and Backbones’ Reveca Torres greet each other at last year’s ROCH.

Spinalpedia’s Josh Basile and Backbones’ Reveca Torres greet each other at last year’s ROCH.

Forecasting the political climate in the capital is more difficult this year than ever before. This has not been a conventional year so far, by any means. From the end of last year through the end of March, disability advocacy groups across the country have been on the front lines pushing back against efforts to cut Medicaid and to remove consumer protections in the Affordable Care Act such as the assurance of continued coverage for individuals with pre-existing conditions. And at the end of March, all of us were successful in that fight when Speaker Paul Ryan (R-Wisc.), pulled the American Health Care Act from the floor of the U.S. House of Representatives.

United Spinal opposed the bill because of the removal of the mandatory essential health benefits package in Medicaid. That includes crucial services to people with disabilities such as rehabilitation and habilitation benefits and chronic disease management benefits, prescription drug benefits and maternity and newborn care services. United Spinal also opposed the bill’s elimination of funding for the Community First Choice option. That option allows individuals with disabilities to receive needed supports and services in their communities and provides funds to Medicaid to cover those services.

Both sides of the aisle are still looking at ways to improve health care for everyone, and United Spinal will always be on the front lines with all of you. This year was no different. United Spinal saw a threat to our health care benefits and community supports and services with the efforts to repeal the Affordable Care Act. We worked together to push back those efforts with lots of calls, emails and Hill meetings — and that resulted in a win for us.

The Coming Battle

This year’s Roll on Capitol Hill will continue the fight for policies that improve the quality of life for our members and people nationwide. We must protect our right to assistive technology, including complex rehabilitation technology  — also known as individually-configured wheelchairs and accessories — medical equipment, medical supplies, prescription drugs and other health benefits and services. Our non-medical issues are: safeguarding the provision of home and community-based services and supports so that individuals can live and participate in their communities; ensuring robust funding for the benefits and services our community depends on; and making sure that people with disabilities are not barred from entering public accommodations at the federal and state levels. If you know about these issues, great! If not, don’t worry. We will cover them thoroughly in our Monday sessions so you feel well-prepared for Tuesday’s meetings. Here are a few of the specific policies we will focus on:

  • Protecting health care benefits and services for the SCI/D community, such as pushing back against all efforts to remove our community’s consumer protections for health care coverage.
  • Advocating for improved access to complex rehab technology: Ensuring Access to Quality Complex Rehabilitation Technology Act of 2017 — H.R. 750; and H.R. 1361/S. 486 — Protecting Beneficiary Access to Complex Rehab Technology Act of 2017.
  • Ensuring robust funding for agencies from the U.S. Department of Health and Human Services to the Department of Labor, etc., so that our community’s benefits and services are maintained.
  • Strengthening community supports and services: the Disability Integration Act states that our community has the right to receive supports and services in our communities that mirror what we receive in institutional facilities matching our choice of where we would like to live. We advocated for this bill last year and the bill should be re-introduced soon for 2017.

For those of you who want to know more about all the bills we will be addressing at Roll on Capitol Hill, visit United Spinal’s Roll on Capitol Hill page or take action now.

Come join us this summer on Capitol Hill to network with friends and colleagues and, of course, to make sure policymakers hear about what matters to you. We had great representation at the Roll last year with close to 35 states, including Hawaii, plus Puerto Rico and the District of Columbia. We would love to have even greater representation this year. Don’t miss this valuable opportunity to join us at the Roll on Capitol Hill. Together, we can make a difference. I look forward to seeing you all again in D.C. Let’s roll!

VetsFirst Rolls Side-By-Side with United

At this year’s ROCH, vets will join other United Spinal members to meet with their legislators.

At this year’s ROCH, vets will join other United Spinal members to meet with their legislators.

VetsFirst, a program of United Spinal Association, is excited to offer veterans an opportunity to join us in Washington, D.C., for our 6th annual Roll on Capitol Hill. We will have sessions at the Roll on Capitol Hill discussing legislation to improve employment services for veterans and improve the Department of Veterans Affairs’ accountability to manage workforce issues effectively to improve veterans access to health care.

VetsFirst is focused more than ever on ensuring Congress addresses the critical policies affecting our veteran community. From improving VA health care and benefits to strengthening access to employment and housing, VetsFirst continues to fight for all generations of veterans, including individuals living with post-traumatic stress disorder and traumatic brain injuries. Visit us at www.vetsfirst.org.

 

– Alex Bennewith, United Spinal Vice President, Government Relations

2017-06-22T22:32:55+00:00 April 20th, 2017|Categories: Latest, United Spinal Updates|

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Spinal cord injury can result in paralysis of the muscles used for breathing; paralysis and/or loss of feeling in all or some of the trunk, arms, and legs; weakness; numbness; loss of bowel and bladder control; and numerous secondary conditions including respiratory problems, pressure sores, and sometimes fatal spikes in blood pressure. Approximately 12,000 new spinal cord injuries occur in the U.S. each year. A majority of injuries occur from motor vehicle accidents, falls, work-related accidents, sports injuries, and penetrations such as stab or gunshot wounds.

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