Elimination of Paralysis Resource Center Programs Possible

The National Centers on Birth Defects and Developmental Disabilities (NCBDDD) provides funding for critical disability programs, and of particular interest for the paralysis community is funding for the Paralysis Resource Center (PRC). Earlier this year the President's budget included a recommendation to consolidate programs within and funding for NCBDDD, possibly resulting in a drastic reduction of funds for the PRC and elimination of disability programs entirely. This consolidation is being proposed without input from the stakeholder community or analysis of the impact on the communities, such as individuals with spinal cord injury and paralysis, who are served by programs supported through NCBDDD.

This was very concerning for our community as the PRC assists over 200,000 individuals with spinal cord injury and paralysis each year by providing resources focused on promoting health, fostering involvement in the community and improving overall quality of life. The PRC also supports state-of-the-art therapies that improve health and mobility, which are directly improving the quality of life for individuals with spinal cord injuries. These are services that individuals with spinal cord injury and paralysis depend upon each day.

Action taken by the community
Over the past months the paralysis community along with other disability groups have been engaged with The Labor, Health and Human Services Appropriations Subcommittee to postpone consolidation. This subcommittee provides funding to the CDC as well as direction on how to fund NCBDDD programs by including Report language as part of its annual funding (Appropriations) bill. To ensure that no harm is done to the programs and services affected by the consolidation process, the disability community has come together and has submitted Report language to the Senate Labor Health and Human Services Appropriations Subcommittee directing the CDC to not move forward on the consolidation until the impact these changes will have on our community is understood.

The Report language requires CDC to conduct a needs assessment for each of the communities, communicate their intentions and have a meaningful dialogue with populations impacted by the proposed consolidation, and present this information to Congress BEFORE implementing any consolidation.

Additionally, a letter was circulated in the House of Representatives by Reps. Barbara Lee (D-CA) and Dan Burton (R-IN) asking Dr. Frieden, the Director of the CDC, to postpone consolidation until they can evaluate the actual impact these proposed changes will have. The letter was delivered to Dr. Frieden with 33 signatories, illustrating strong Congressional support.

You have made a difference
In no small part due to the advocacy efforts taken by the Reeve Foundation and the paralysis community, the Committee included language in the Report that accompanied the LHHS Appropriations bill passed out of Committee on September 22nd that rejected the consolidation proposal. The language states "The Committee has rejected the consolidation proposal in the fiscal year 2012 budget for disability initiatives...Should the administration decide to put forward a similar request in fiscal year 2013, the Committee encourages CDC to ensure that it is accompanied by elements previously proposed by the disability partners. These were previously shared with you." This is an important accomplishment, but we will need your help in keeping the pressure on Congress as the process moves forward. We will be in touch to let you know how you can help.

The committee also included funding for NCBDDD of $138 million which is an increase of $2 million, over 2011 levels. As discussed in the earlier sections, the entire budget process is in flux. So while this recent news is great for our community, moving forward we will continue to watch as the numbers become finalized.