If you joined us on the Hill or advocated “virtually”, thank you. Thanks to you we’ve had over 200 responses from our virtual Teal on the Heal, and together we’ve reached 38 states.

You have the power to inspire our lawmakers to take action that will shape public policy and make a difference in the lives of those impacted by Spina Bifida. Let’s keep the momentum going and:

1. Meet with your Members of Congress at their local office.
2. Participate in “virtual” advocacy from anywhere – even if you attended the Hill
event. You can use any device: tablet, smartphone or computer. And participation is easy. Contact your Members of Congress with just a few clicks!

Ask your members to (and you can email them on all 3!):

 

1. Funding of the Spina Bifida Program at the NCBDDD – Click here to advocate. 

The Issue: Right now, members of Congress are voting on how to allocate funds at the National Center for Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC). Let your officials know that funding is critical to the National Spina Bifida Program and the National Spina Bifida Patient Registry – the only place in the federal government that looks at Spina Bifida as a whole for both adults and children.

The Ask: Ask them to support a $7 million budget for the Spina Bifida Program at NCBDDD and fully fund the Center. The program has been level-funded at $6 million for the past four years.

 

2. Ask your Members of Congress to sign onto the Spina Bifida Caucus – Click here to advocate.

The Issue: There Congressional Spina Bifida Caucus, in both the House and Senate works to enhance and expand research, treatment, care and quality of life for people with Spina Bifida.

The Ask: Ask your members in both the house and senate to join. The Caucus is co-chaired in the House by Congressmen Chris Smith (R-NJ) and Henry Cuellar D-TX

 

3. Protect Access to Wheelchair “Accessories” – Click here to advocate. 

The Issue: People with Spina Bifida and others including those with ALS, cerebral palsy, multiple sclerosis, muscular dystrophy, spinal cord injury, and traumatic brain injury often need wheelchairs for mobility. CMS is using Medicare “Competitive Bid Program (CBP)” pricing to cut payment amounts for “accessories” used with Complex Rehab Wheelchairs. Complex Rehab Technology (CRT), including both power and manual wheelchairs, along with related “accessories” are used by a small number of people. The following are considered “accessories” by CMS:

– seat/back pressure relieving cushions
– positioning devices
– recline/tilt system, and
– specialty controls.

There should be equal access: CMS partially solved the problem by publishing a policy clarification stating it would not use CBP pricing for accessories used with Complex Rehab “power” wheelchair. Unfortunately, this did not include “accessories” used with Complex Rehab “manual” wheelchairs. This creates a major disparity for people with disabilities who use complex rehab manual wheelchairs who now have less access to needed accessories than those using complex rehab power wheelchairs. There should be equal access.

The Ask: Ask your officials to vote for House of Representatives bill 3730 or Senate bill 486 to help protect access to this specialized equipment for people with disabilities.