What’s Happening in Washington?

By: Alison Barkoff and Erin Shea
December 15, 2019

It was another unpredictable year-end in DC. While the most visible Congressional activities were not related to passing legislation, we have continued to make progress on a number of priorities for the disability community.

Updates on Health Care

Money Follows the Person: In early December, Senate Finance Committee Leaders announced a bipartisan drug pricing agreement that would use cost savings to fund the first-ever proposed permanent reauthorization of the Money Follows the Person (MFP) program, which helps people with disabilities and older adults move out of institutions and into the community. Unfortunately, the budget passed by Congress in late December only extended MFP funding to May 22, 2020. However, we understand that Congress chose to pass a short-term extension of MFP (along with several other Medicaid programs) to create pressure to pass a larger healthcare package, including prescription drug reforms, before their Memorial Day recess. Had Congress passed a multi-year extension in the year-end budget, this chance for permanent reauthorization of MFP in May would not exist. We’ll need everyone’s help advocating for permanent MFP funding!

Drug Pricing: There is bipartisan support around drug pricing reform, and disability advocates are trying to ensure that any proposed legislation both lowers costs and meets the needs of people with disabilities. There are bills in the House (H.R. 3) and Senate (S. 2543, which was updated in December to permanently fund MFP); however only the Senate bill is bipartisan. Both bills create an out-of-pocket cap in Medicare and simplify the prescription drug benefit. Because of advocacy by disability groups, H.R. 3 now includes a ban on the use Quality Adjusted Life Years (QALYs), a way cost-effectiveness of treatments is determined that literally places a lower value on the lives of people with disabilities. As mentioned above, we expect there to be pressure to move on drug pricing before the Memorial Day recess.

Affordable Care Act Lawsuit: On December 18, the Fifth Circuit Court of Appeals issued its decision in Texas v. United States, an appeal of the decision of a federal court in Texas to strike down the entire Affordable Care Act (ACA) in 2018, including provisions critical to people with disabilities and other pre-existing conditions. The Circuit Court ruled that the ACA’s individual mandate is unconstitutional and sent the case back down to the same district court judge who issued the initial decision to determine whether the entire law should now be found unconstitutional. The case will undoubtedly be appealed to the Supreme Court, although the timing is unclear. In the meantime, the courts have “stayed” the decision – meaning the ACA remains fully in place during the appeals.

Public Charge Litigation: As we described in our last column, five federal district courts issued decisions preventing the federal government from implementing the new public charge rule, which would prohibit people who use or might use public benefits (including now Medicaid home and community-based services) from getting a visa or green card. Three of those courts issued decisions preventing the rule from going into effect anywhere in the country. The federal government asked the appeals courts to allow the rule to go into effect while the case is on appeal and so far, two of the three appellate courts have agreed to let the rule go forward and the third court will decide later in January. We will file an amicus brief explaining how the public charge rule illegally discriminates against people with disabilities in the appellate courts, as we did in the district courts. Remember, at this point, the rule is NOT in effect during the appeals.

Updates on Disability Employment
USCCR Hearing: On November 15, the United States Commission on Civil Rights (USCCR) held a hearing about civil rights issues related to paying sub minimum wages to people with disabilities. Section 14(c) of the Fair Labor Standards Act allows employers to get special certificates to pay workers with disabilities less than the minimum wage (often pennies on the dollar) that are typically used in sheltered workshops, where workers with disabilities are segregated from their non disabled peers. Alison testified about the federal government’s role in protecting and advancing the rights of people with disabilities in employment, and Ruby Moore of the Georgia Advocacy Office testified about her experience helping people with disabilities get competitive, integrated employment (CIE). The public also had an opportunity to give comments orally or in writing, and many self-advocates participated. We expect a report later this year.

Congressional Briefing: We’re continuing to build support for the Transformation to Competitive Employment Act, a bipartisan bill that would expand opportunities for CIE while phasing out the use of sub minimum wages under Section 14(c) over six years. As part of that effort and in honor of National Disability Employment Awareness Month, we held a Congressional briefing in October, where panelists shared stories of successful transitions from sheltered workshops to CIE and state efforts to expand CIE.

WIOA Regulations: Disability groups continue to oppose the Department of Education’s efforts to reopen regulations defining CIE, arguing it would roll back the progress made in expanding opportunities for people with disabilities to obtain CIE since Congress passed the Workforce Innovation and Opportunity Act in 2014. We sent a letter to the Department opposing the reopening of the regulations that was signed by over 200 groups representing a broad coalition of stakeholders across all 50 states (including GCDD, Georgia APSE, and the Georgia Advocacy Office).

Other Bills on the Horizon
As the congressional session progresses, top priorities include:
Keeping All Students Safe Act (KASSA): Disability groups are expecting the reintroduction of KASSA shortly, a bill from last Congress that would eliminate seclusion and significantly limit the use of restraints in all schools that receive federal funding, including for students with disabilities, who are at particular risk.

HCBS Infrastructure Act: Disability and aging groups have been working together on a bill to provide additional funding to states for infrastructure in their Medicaid-funded Home and Community-Based (HCBS) systems, including for housing, transportation, employment and workforce development. We hope the bill will be introduced in the coming months.
These updates represent only a small portion of what we’re working on. For more on our work, visit our website and connect with us on Facebook and Twitter.

Alison Barkoff and Erin Shea work on policy and litigation related to community integration and inclusion of people with disabilities, including Olmstead enforcement, Medicaid policy, employment, housing and education.

Note: information current as of 1/6/20