Policy Corner: May 29, 2020

BIAA Urges Data Collection Regarding Persons with Disability and COVID-19

As a member of the Disability and Rehabilitation Research Coalition (DRRC), the Brain Injury Association of America (BIAA) joined other stakeholders in expressing concern regarding the need for better reporting of individuals with disability who contract COVID-19. BIAA signed a letter to U.S. Health and Human Services (HHS) Secretary Alex M. Azar urging him to ensure that the Centers for Disease Control and Prevention (CDC) and other programs within HHS collect and report data on demographic characteristics, de-identified and disaggregated by disability status, in order to better inform the COVID-19 pandemic response.

HHS released its first mandated report to Congress on COVID-19 testing, disaggregated by demographic factors (not specifically including disability). The report itself included little information on testing itself, and rather provided links to various CDC sources that are already tracking and publishing testing data. Democrats, including House Energy & Commerce Committee Chairman Frank Pallone (D-N.J.) and Senate Health, Education, Labor, and Pensions (HELP) Committee Ranking Member Patty Murray (D-Wash.), criticized the report as being inadequate.

Reps. Ayanna Pressley (D-Mass.), Robin Kelly (D-Ill.), and other members of the Congressional Black Caucus, along with Sen. Elizabeth Warren (D-Mass.) and others, introduced the Equitable Data Collection and Disclosure on COVID-19 Act, H.R. 6585, which would require HHS to collect and report racial, ethnic, and other demographic data on COVID-19 testing, treatment, and fatality rates. The introduced legislation mentioned disability, but did not include significant focus on the importance of disability data collection. The lead sponsors also sent a letter to Vice President Mike Pence and CDC, urging CDC to fill demographic gaps in COVID-19 data collection, referenced disability status in the “other relevant characteristics” category of the required reports, and detailed concerns about the elevated risk of complications, discriminatory rationing policies, and care facility infection rates faced by many people with disabilities. BIAA is supporting the work of the DRRC and others in the disability community to ensure that disability status is prioritized and included as an explicit requirement for data collection and reporting during the pandemic in any legislation addressing data collection going forward.

BIAA Opposes Education Department’s Proposal to Change Personnel Development Grants

BIAA joined other disability organizations in opposing the U.S. Department of Education’s proposal to change the State Personnel Development Grants administered by the Office of Special Education and Rehabilitative Services into a voucher program. The disability groups argued that doing so would: (1) set a low bar for evidence-based professional development; (2) fail to meet best practice standards for professional development; (3) undermine existing state and local requirements; and (4) result in inequitable benefits. BIAA will watch for the final rules published in the federal register in the months to come.

Senators Introduce Legislation to Help with Child Care

Sen.Patty Murray (D-Wash.), Ranking Member of the Senate HELP Committee, along with Rep. Rosa DeLauro (D-Conn.), Chair of the House Appropriations Subcommittee on Labor, HHS, and Education, and Rep. Bobby Scott (D-VA), Chair of the House Education and Labor Committee, introduced the Child Care is Essential Act, H.R. 7027,in both the House of Representatives and in the Senate. The legislation would create a $50 billion Child Care Stabilization Fund within the existing Child Care and Development Block Grant program. As businesses begin to reopen and working families need child care, many providers across the country remain shut down or are operating with significantly reduced capacity. Child care providers that are able to stay open are struggling to cover their increased operating costs with limited revenue, and many are at risk of permanent closure. The new Child Care Stabilization Fund would provide grant funding to child care providers to stabilize the child care sector and support providers to safely reopen and operate.

BIAA gratefully acknowledges the Centre for Neuro Skills and Avanir Pharmaceuticals for their support for legislative action.