Teal on the Hill

What Are SBA’s Advocacy Priorities?

We need you to share your story with Members of Congress and ask to:

  1.  Increase funding for the Spina Bifida Program at the NCBDDD at the CDC
  2. Tell Congress to Include the Disability Community in COVID-19 Relief Bills
Fund the Spina Bifida Program at the NCBDDD at the CDC

THE ISSUE: The only place in the federal government that is specifically studying this complex condition for children and adults is the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention through the National Spina Bifida Patient Registry and the Spina Bifida Collaborative Care Network.

THE ASK: Support an $8 million budget for the National Spina Bifida Program at NCBDDD. The program has been level-funded at $6 million for the past six years. With increased funding we will:

  1. Fund research on sudden unexplained death among adults in the Spina Bifida (SB) community
  2. Determine the number of people living with SB in the US
  3. Develop studies on social determinants of health within the Spina Bifida registry
  4. Create a protocol for improving the health of children who have Spina Bifida with
    hydrocephalus
  5. Research barriers to transition to adult care and analyze models for care

STATUS: At last year’s budget cycle the House of Representatives passed the increase, however, it did not pass in the Senate. With your help, we hope to gain an increase for Fiscal Year (FY) 2021.

Tell Congress to Include the Disability Community in COVID-19 Relief Bills

THE ISSUE: On Tuesday, May 18, 2020, the U.S. House of Representatives passed legislation that included many of our asks to support the critical needs of people with disabilities, their families, and the direct support professional.

THE ASK: Your Senators need to hear from you so that these and other essential provisions remain in the bill that ultimately passes Congress.

  1. Dedicated funding for Medicaid home and community-based services (HCBS). These funds are necessary to serve people with disabilities in their homes and communities and will provide better wages and support for the DSP workforce. Access to HCBS will limit the risk of people with disabilities being put in institutions.
  2. Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. DSPs must be designated as essential workers so that they can get access to the PPE and medical supplies they need.
  3. Paid leave for all caregivers. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions.
  4. Economic impact payments for all people with disabilities. Tell Congress to make sure that stimulus payments are available to everyone, including adults with disabilities who are claimed as dependents.

Help us Care for our Community

SBA is working overtime to ensure that programs and services that benefit the Spina Bifida community remain intact during this crisis.

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