Disability Policy News In Brief

November 4, 2019

AUCD, Disability Policy News In Brief, every Monday Disability Policy News In Brief, every Monday, from the Association of University Centers on Disabilities (AUCD)
November 4, 2019   |   Vol. MMXIX, Issue 43
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Census 2020

The U.S. Census Bureau is gearing up for the 2020 Census. Recently released is their accessibility guide called "The 2020 Census is Accessible for Everyone."  The Census Bureau says they are making sure that however people choose to respond - online, by phone or by mail - the census is accessible for everyone.

Action Steps:

  • Read the new factsheet here.
  • Find resources about Census 2020 from our friends at NDRN.


The House Committees on Energy and Commerce, Ways and Means, and Education and Labor have considered the Lower Drug Costs Now Act of 2019 (H.R.3). This bill requires the Centers for Medicare and Medicaid Services to negotiate prices on insulin and at least 25 drugs each year. These negotiated prices would apply to all Medicare Advantage and Medicare Part D plans. Additionally, it creates an out-of-pocket limit of $2,000 for Medicare Part D plans. During the markup, provisions were added to ensure that the value of drugs is not measured based on quality-adjusted life years (QALYs), which are based on the premise that the value of one year of the life of a person with a disability is less than the value of one year of the life of a person without a disability.

Action Steps:

  • Thank your members for ensure damaging QALYS were not included in this legislation.

Senator Hirono (D-HI) and Representative Cardenas (D-CA) reintroduced the Covering our FAS Allies (COFA) Act (S. 2218, H.R. 4821) to restore Medicaid eligibility to citizens residing in the U.S. under the terms of the Compacts of Free Association (COFA). Under the Compacts, COFA citizens are able to travel to, live and work in the U.S. in exchange for the U.S. military's use and strategic positioning in the Freely Associated States of the Marshall Islands, the Federated States of Micronesia, and Palau. Unfortunately, with the passage of welfare reform in 1996, Congress removed eligibility for COFA citizens living in the U.S. to participate in many federal benefits programs, including Medicaid. This exclusion has led to about 61,000 Pacific Islanders in the U.S. lacking access to basic health care access. 

Actions Steps:

Lifespan Respite Care Act

The Lifespan Respite Care Reauthorization Act of 2019 (S.995) was marked up in the full HELP Committee last week. In the manager's amendment, the authorization levels have been changed to $10 million annually through FY 2024 ($50 million over 5 years). This is considerably less than as introduced and the House-passed bill ($200 million over five years) and even less than reauthorization bills introduced in past Congresses ($75 million over five years).

Action Steps:

  • Learn more about the Lifespan Respite Care Act here.
  • Share your support and concerns with your Senators.
    • United States Capitol switchboard: (202) 224-3121
Higher Education

Improving Access to Higher Education Act of 2019 (H.R. 4643) was introduced by Rep. Mark DeSaulnier (D-CA) on October 11, 2019. This bill will improve college access and completion for all students with disabilities. The College Affordability Act  (H.R. 4674) was introduced on October 15, 2019, by Rep. Bobby Scott (D-VA), Chair of the House Education and Labor Committee. This bill is a comprehensive reauthorization of the Higher Education Act (HEA) and also contains a number of provisions important to students with disabilities. Both bills include most of the Inclusive Higher Education Committee recommendations. The House Education and Labor Committee held a mark up of the College Affordability Act last week with no impact on the key provisions to the disability community. It passed committee and now heads to the House floor. It will likely pass by the end of the year but the prospect of a comprehensive HEA reauthorization remains uncertain in the Senate.

Action Steps:

  • If your center has a comprehensive transition program for students with IDD, contact your members of Congress about the importance of your program for students to access higher education. Share that reauthorizing the Higher Education Act to improve postsecondary opportunities for students with IDD is critical to your state and programs.

Budget and Appropriations

We are three weeks away from the current stop-gap continuing resolution (CR) expiring on November 21st. Senators voted on a bipartisan spending package (HR 3055) containing four of the 12 fiscal 2020 spending measures. A vote on a second multi-bill package (HR 2740) that includes the Defense (and Labor, HHS, and Ed - important areas for the disability community) spending measure was held but had not advanced due to partisan disagreements over funding for a border wall. This would likely require Congress to pass a new CR. Under a CR, agencies can't start new projects or increase buying rates on long-term contracts.

Action Step:

  • Learn more about the budget and appropriations process.
  • This is an opportunity to contact your members of Congress about your center's appropriations request. Share with them about the work of your center and the need for continued federal funding to make an impact in your state.

Congressional Openings

Rep. Katie Hill (D-CA) announced her resignation from Congress amid an ethics investigation over an alleged relationship with a staffer. State law gives the governor up to two weeks after a vacancy opens to set the date for a special election. Likely to occur is a special election that would coincide with the state's March 3rd primary, but the election could come as late as early May. The winner of the election would serve out the remainder of Hill's term. The top two candidates in the primary would face off again in November 2020 to serve a full term. George Papadopoulos, the former Trump adviser, filed paperwork with the Federal Election Commission to run to fill the seat vacated by Rep. Hill.

Rep. Greg Walden (R-OR) announced his retirement at the end of the current term. He served as the lead Republican on the Energy and Commerce Committee, the committee with jurisdiction over Autism CARES.

These announcements add to the growing list of vacancies in Congress:

  • Rep. Elijah Cummings' seat (MD-7th District) will be filled by a special primary on February 4 and special general election on April 28, 2020.
  • Rep. Sean Duffy's seat (WI--7th District will be filled by a special primary held February 18 and special general election on May 12, 2020.
  • Rep. Chris Collins' seat (NY--27th District) will be filled by a special election likely in April 2020.
  • Rep. Francis Rooney (R-FL) is retiring following the 116th Congress.
  • Senator Johnny Isakson (R-GA) is resigning at the end of 2019 due to health issues.

Action Steps:

  • Centers in CA, OR, FL, MD, WI, GA and NY have an opportunity to engage with candidates during the upcoming elections on disability issues.
  • Make sure you are registered so you can vote.


Judge Michael Simon of the U.S. District Court in Oregon issued a temporary restraining ordering blocking the Trump administration from enforcing a plan to deny visas to would-be immigrants based on their inability to show they could pay for health insurance or medical costs in the U.S.

Campaign 2020

Pete Buttigieg is the latest candidate to release a  Disability Plan: Dignity, Access, and Belonging - A New Era of Inclusion for People with Disabilities.

Former Congressman Beto O'Rourke of Texas announced on November 1 he is dropping out of the presidential race.

The next (fifth) Democratic debate will be co-hosted by MSNBC and the Washington Post on November 20 in Georgia. While the format is still to be announced for the November debate, NBC has said it will be taking user-submitted questions for the evening.

Action Steps:

  • Want to hear about candidates disability policy agendas during the next debate? Submit a question here.

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Action Steps:

Policy at AUCD's Annual Conference

The AUCD policy team is excited to see you in a month at our Annual Conference! Don't forget to schedule your Hill Visits for Wednesday, November 20th.

Action Steps:

  • Check out the policy related sessions this year.
  • Let us know what Hill visits you have. By completing this survey, we will be able to prepare packets for you to take to your meetings.

AUCD Policy Talk:

logo of AUCD Policy Talk

ICYMI: Read our latest blog post: Guardianship: Clashing Views from Self-Advocates and Family Leaders. As someone interested in disability policy, we ask you to consider writing and submitting a blog post.

Action Steps:

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