Disability Policy News In Brief

May 28, 2018

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May 28, 2018   |   Vol. XV, Issue 163
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Editor's Note: This edition of In Brief has been set early in observance of Memorial Day

Congressional Recess

Senators will be in their states until Sunday, June 3 and Representatives will be in their districts until Monday, June 4.

  • Action Item: This is a great opportunity to meet with your Members in your state! If you have any questions on how to schedule appointments and what you should talk about, please contact Christine Grosso. You can also connect with your Members at a Town Hall meeting or similar public event; a searchable list of scheduled events can be found at the Town Hall Project.
  • Future planning: Members of congress will also be on recess the first week of July, most of August, and early September - see Congress.gov schedule and a Roll-Call calendar.

Budget and Appropriations

Earlier this week, House and Senate Appropriations Committees approved their FY 2019 302(b) allocations for the 12 Appropriations Subcommittees. The House plan would provide no increase to the Labor-HHS-Education bill. The Senate plan would provide a $2.2 billion increase, which amounts to a 1.2 percent increase, above the FY 2018 allocation for Labor-HHS-Education bill. In all likelihood, the final bill out of conference is expected to look more like the Senate than the House plan because of the 60-votes needed to pass spending bills. The committees should take up the Labor-HHS-Education bills in late June. AUCD and other organization with HRSA programs will work with appropriators on the funding needs for Maternal and Child Health programs and Initiatives.

Health Care

Introduction of Health Equity and Accountability Act (HEAA)

On May 23, HEAA of 2018 (HR 5942) was introduced by Representative Barbara Lee (D-CA), with support from the Congressional Tri-Caucus (comprised of the Congressional Asian Pacific American Caucus (CAPAC), the Congressional Black Caucus (CBC), and the Congressional Hispanic Caucus (CHC)). Senator Mazie Hirono (D-HI) plans to introduce a companion bill soon. This bill focuses on eliminating racial and ethnic health disparities (see CDC definition) and serves as the benchmark of how to comprehensively address health equity in the United States. HEAA "addresses health inequalities, their intersections with immigration status, age, disability, sex, gender, sexual orientation, gender identity and expression, language, and socio-economic status, along with obstacles associated with historical and contemporary [current] injustices". See section by section overview of HEAA here. AUCD signed on to the HEAA letter of support earlier this month.

  • Action Item: Educate your members on the importance of this bill, and the work that your Center does around addressing racial and ethnic health disparities including those experienced by people with disabilities.

"Right to Try"

On May 22, the House passed the "right-to-try" legislation (HR 5247 and S 204) by a vote of 250-169. The Senate version, introduced by Ron Johnson (R-Wis.), had already passed last August. The measure now awaits a signature from the President, who repeatedly supported the measure stating, "the Administration believes treatment decisions for those facing terminal illnesses are best made by the patients with the support and guidance of their treating physicians", and is expected to sign the legislation into law.

  • Background: The bill aims to give eligible patient who have been diagnosed with a life-threatening condition, who have exhausted approved treatment options and are unable to participate in a clinical trial involving eligible investigational drugs, a different pathway to access experimental therapies that have not yet received full approval from the FDA. The legislation doesn't obligate drug makers to provide the treatments, and it doesn't prevent them from charging patients for their associated costs if they do.
  • Thoughts on bill: Opponents say the bill would weaken the FDA's oversight and argue the agency already has a way for terminally ill patients to use unapproved treatments. The FDA has said it approves 99 percent of requests, often quickly. Proponents, those in favor of the bill, argue that those who are terminally ill should have every tool at their disposal to try a drug that could possibly help. They note that the medicines must have passed a phase 1 clinical trial and be in the FDA's timeline for review. They also say the drug approval process takes too long.

Medicaid Equal Access Rule

CCD co-chairs submitted a letter to HHS Secretary Alex Azar regarding the proposed rule on Methods for Assuring Access to Covered Medicaid Service (see last week's In Brief for background). AUCD supports the concerns expressed in this letter and are awaiting the Secretary's response.

Autism CARES

As of May 15, the following Members have joined the Autism Caucus: Blunt Rochester (DE), Courtney (CT), Gallagher (WI).

  • Action Item: If you are from one of these states, please use this pre-crafted letter (that can be personalized) to thank them for joining. If your Member is not on the Caucus, please use this pre-crafted letter (that can be personalized) to encourage them to join. Please also reference AUCD's new tool to support your efforts.

Food Security - Farm Bill Update

The current plan, announced by House Majority Whip Steve Scalise, is for a vote on the House floor on or by June 22nd. As with all plans, this may change as negotiations on the Farm Bill progress. The Senate has signaled intent to introduce its own version of the Farm Bill for mark up in the Agriculture Committee in early June, with hopes to bring the bill to the full Senate floor in late June. Again, this timing may change as negotiations are ongoing.

  • Action Item: Meet with your members when they are in their states and districts during this recess and educate them on the importance of SNAP, free school lunches, food banks, and other essential food benefit programs for low-income Americans with disabilities.
  • See previous In Brief for background info on this bill

Civil Rights

The Disability Integration Act (DIA) is a civil rights bill intended to address long term services and supports (LTSS) and to reduce the institutional bias that still exists in Medicaid. The legislation would require states and insurance providers that pay for LTSS to change policies to provide community-based services as a primary option and offer home and community based services (HCBS) to people currently in institutions. This bill was introduced by Senator Schumer in the Senate (S 910) and Representative Sensenbrenner in the House (HR 2472). See more information on the sections of the bill here and here.

  • Action Item: If your member is a co-sponsor (House and Senate), please thank them. If not, please educate them on the importance of community-based services, the work that you do at your Center around LTSS and HCBS, the preference of people with disabilities to live in the community versus an institution, and how community care is more cost-effective than institutional care.

U.S. Court of Appeals for the Fifth Circuit

On May 24, the US Senate Committee on the Judiciary voted along party lines to approve the nomination of Andrew Oldham to the U.S. Court of Appeals for the Fifth Circuit to the full Senate. The Fifth Circuit includes: Eastern District of Louisiana, Middle District of Louisiana, Western District of Louisiana, Northern District of Mississippi, Southern District of Mississippi, Eastern District of Texas, Northern District of Texas, Southern District of Texas and the Western District of Texas.  The Leadership Conference has expressed concerns related to Mr. Oldham's history regarding the ADA, voting rights, immigrant rights, women's access to reproductive care, environmental protection, and gun safety. Given these concerns, the Leadership Conference has a sent a letter in opposition to Oldham's nomination.

  • Action Item: Advocates are encouraged to educate their Senators on the rights of people with disabilities, the role of the ADA and the Fair Housing Act, and the importance of appointing someone to this position who is nonpartisan and has extensive knowledge in these areas.

New Appointments

On May 20, the Senate Finance Committee (Chaired by Hatch, R-Utah) held a hearing to consider the nominations of John J. Bartrum (of Indiana) to be an Assistant Secretary of Health and Human Services (HHS) and Lynn A. Johnson (of Colorado) to be Assistant Secretary for Family Support of HHS. Testimony and archived webcast can be found here.

On May 24, the Committee voted to approve the nomination of Bartum as the new assistant HHS secretary by a roll call vote of 27-0. If you would like to submit a statement for the record, please do so here.

Tuesdays with Liz: Disability Policy for All

This week we take a look back at Liz's interview with Bruce Darling who speaks about what the DIA is and why it is important for people with disabilities. 


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For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD's Glossary of Legislative Terms 

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