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Washington DC Update 11/10/21
Much negotiation continues on the details of the reconciliation bill. Last week saw several things being added to or taken away from the framework. Paid Medical leave is back in! Although it is only for 4 weeks total (initial proposal was 12 weeks), it is back in there! Many of the sticking point issues, such as taxes, drug pricing, and immigration, continue to be sticky with lots of back and forth discussions. Additionally, several members of Congress are not satisfied with existing calculations indicating that the bill is paid for (by the tax increases included in the bill itself), and therefore, will await a Congressional Budget Office (CBO) score in order to cast their vote.

In the meantime, on Friday, November 5, 2021, the House passed the bipartisan Infrastructure Investment and Jobs Act. It is anticipated that next week President Biden will sign it into law. A lot of the focus of the Washington Update has centered around the reconciliation bill and how its social and health proposals will affect the health and well-being of CYSHCN and their families. However, there is a lot in the infrastructure bill that will improve the ability of CYSHCN and their families to access care and quality of life.

  • $65 billion for Broadband
  • $42 billion for Broadband infrastructure and access
  • $14 billion specifically for Broadband access for low-income Americans

  • $39 billion for public transportation
  • This represents the largest investment in public transportation by the Federal government

  • $65 billion to improve the power infrastructure

  • $55 billion for water infrastructure and clean drinking water
  • $15 billion to specifically eliminate lead pipes (NOTE - does not replace all lead pipes, but is a start)

  • $110 billion for roads, bridges, and other transportation projects

All of these investments impact the ability of CYHSCN and families to access care and life with safe and accessible roads to travel to school and health care, safe and accessible public transportation, reliable power to operate life-saving equipment, access to reliable Broadband for telehealth, and safe, clean drinking water!

Of Note:

  • EQUITY - woven throughout all of these and other components of the bill is the requirement that investments advance equity and redress past inequities by prioritizing investments in underserved communities and advancing environmental justice.

  • Commitment to advancing clean energy options in all of these investments.

What is next and how can we work together in our states to ensure infrastructure investments help CYSHCN and families?

  • Use your voice! The Act requires the inclusion of input from those on the ground in each state and local community as to the use of the funds.

  • Identify and advocate for transformative projects in your community that will benefit from federal funding through this Act. What transportation, broadband, power, clean water, or public transportation projects do CYSHCN and families need?

  • Be on the lookout for opportunities! In the coming months, planning will be in full swing and the federal government wants to work closely with state, local, tribal, and community partners to ensure delivery of the Act meets your needs.

Congress is out this week but will return to a flurry of work prior to the Thanksgiving Holiday break. December will likely prove anything but full of holiday cheer and celebration, as the debt ceiling and budget have to be dealt with by December 3rd or the federal government will shutdown.
Focus on other DC happenings: Supreme Court Case CVS v. DOE
The lawsuit: CVS v. Doe, involves a CVS-managed prescription drug plan that requires people who need “specialty medications” to receive them by mail, instead of at their local pharmacy. Five individuals living with HIV sued over the requirement, arguing that it effectively prevents them from receiving needed care for their condition and represents discrimination based on their disability.

At issue: Does Section 504 provide protections where discrimination is unintentional (called “disparate impact” by the Courts) or must there be intent to discriminate?


  • Congress created Section 504 to explicitly cover neutral policies. All Congressional amendments to 504 have kept the language about the prohibition of discrimination with neutral policies in tact.

  • Supreme Court precedent makes clear that most discrimination against people with disabilities comes from “benign neglect” or thoughtlessness — and that removing the ability to get relief from such discrimination would undermine the entire purpose and history of Section 504. The Court explained in Alexander v. Choate that congressional intent would be decimated if Section 504 were interpreted to require intent to discriminate.

The arguments:

  • CVS is saying that Section 504 does not even cover situations where discrimination is supposedly unintentional, such as when there is a neutral policy or practice that harms or excludes disabled people. Courts often refer to this kind of discrimination as “disparate impact.”

  • The plaintiffs, and many disability rights organizations, argue that the Supreme Court should not decide the issue of whether disparate impact claims are permitted under Section 504 in this case because the claims brought are, at their core, claims concerning differential treatment and failure to make reasonable accommodations rather than disparate impact claims.

Why is this important? A ruling for CVS would turn disability rights back decades as it would cut disability rights protections against discrimination in all kinds of places, affecting not just 504, but also the protections afforded by the Americans with Disabilities Act (ADA).

For more details, consider reading CVS v. DOE Explained from the Disability Rights Education & Defense Fund (DREDF) document or this plain language explanation from the National Center on Independent Living (NCIL).
CMS and OSHA Release Vaccine Mandate Rules
On Nov 4, the Centers for Medicare & Medicaid Services (CMS) and the Occupational Safety and Health Administration (OSHA) released their vaccine mandate rules.

The CMS interim final rule applies to all facilities that participate in Medicaid and Medicare programs and are regulated under CMS’ Conditions of Participation (CoPs), Conditions for Coverage (CfCs), or Requirements of Participation. Staff will be required to receive a first dose of a COVID-19 vaccine (or have requested an exemption) by Dec 5, 2021, and will be required to be fully vaccinated (or have been granted an exemption) by Jan 4, 2022. For the CMS rule, healthcare staff will not be allowed to undergo regular testing in lieu of vaccination. View the FAQs here.

The OSHA emergency temporary standard applies to private employers with over 100 employees; covered employers will be required to implement a mandatory COVID-19 vaccination or weekly testing policy by Jan 4, 2022. A federal court in Louisiana, however, temporarily blocked the OSHA rule in response to a lawsuit filed by a handful of states, potentially delaying implementation. 
Medicaid Corner:
Information shared by the National Association of Medicaid Directors (NAMD)
CMS Releases Guidance on Mandatory Coverage of COVID-19 Treatment

On Oct 22, CMS released guidance on the American Rescue Plan’s requirement that state Medicaid and CHIP programs cover COVID-19-related treatments without cost-sharing. Beginning Mar 11, 2021, state Medicaid programs are required to cover treatments for COVID-19, including specialized equipment and therapies, preventive treatments, and treatments for “long COVID.” States must also cover the treatment of conditions, without cost-sharing, that may seriously complicate the treatment of COVID-19 (like cardiovascular diseases, chronic lung diseases, and cancer) if these services are already included in the state plan or a waiver. To ensure that all state plans reflect the statutory requirements, states must submit a Medicaid state plan amendment attesting to coverage of these treatments without cost-sharing.

KFF Releases Annual 50-State Medicaid Survey

The Kaiser Family Foundation (KFF) recently released their annual 50-state survey findings in coordination with NAMD. The KFF survey of Medicaid directors in states and D.C. highlights policies in place and changes implemented or planned for the current fiscal year. Findings appear across five sections of the report: delivery systems, benefits and telehealth, social determinants of health, provider rates and taxes, and pharmacy. KFF also released the companion report on Medicaid enrollment and spending growth in FY2021 and FY2022.
CMS Releases Medicaid and CHIP Data Snapshot Update, 2019 Managed Care Enrollment Data

CMS recently released an updated Medicaid and CHIP snapshot with data through February 28, 2021. As with the previous data snapshots, this report includes information on service utilization by Medicaid and CHIP members during the COVID-19 public health emergency, including COVID-19 treatments, services delivered via telehealth, and behavioral health services. CMS also released managed care enrollment data for 2019, including plan-specific enrollment statistics on Medicaid managed care programs, national-level summary data showing trends, and state- and regional-level cross-sections. The data files can be downloaded here.
Tracking ARPA funding in states: Support for Technology, Telehealth and Data Infrastructure

Follow this interactive map to see how states are using some of their Section 9817 American Rescue Plan Act dollars to support telehealth service delivery, technology-based innovations, and data infrastructure-building opportunities to address longstanding technological challenges with home & community-based services (HCBS) populations.

Strategies for Title V and Medicaid to promote Health Equity for CYSHCN

State Title V and Medicaid programs provide services for children and youth with special health care needs (CYSHCN) to support their physical, behavioral, and developmental care. States are also advancing health equity goals to address disparate outcomes experienced by people of color. With evidence of existing inequities laid bare by the COVID-19 pandemic, states are finding opportunities to unite these efforts to improve care for CYSHCN of color.

This mini-brief, developed by the National Academy for State Health Policy (NASHP) in partnership with the Catalyst Center, describes key areas where states are strengthening health equity for CYSHCN, including initiatives in family partnership, Medicaid Managed Care (MMC) programs, quality measurement and performance reporting, and cross-sector partnerships.

Thank you for subscribing to the Washington DC Update newsletter. Please feel free to contact the Family Voices Director of Public Policy and Advocacy, Cara Coleman, with any questions. Past issues of the Update appear on the Family Voices website. If you wish to unsubscribe, you can do so via the "Unsubscribe" link below.

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families--including those of cultural, linguistic and geographic diversity--in order to improve healthcare services and policies for children.