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Washington DC Update 10/6/21
As the dust settles from last week’s race to end-of-September deadlines, is anything more clear as we begin October on the Hill? No, not really!
Government Shutdown

Averted! On September 30, 2021, Congress passed (and President Biden then signed) a continuing resolution (a temporary budget bill) that would fund the federal government through December 3. However, looming before that date is the issue of the debt ceiling--the Treasury Department will run out of money to pay its debt on October 18.

What is the Debt Ceiling?

The debt ceiling, or debt limit, is a cap on the total amount of money that the federal government is authorized to borrow to fulfill its financial obligations. Because the United States runs budget deficits — meaning it spends more than it brings in through taxes and other revenue — it must borrow huge sums of money to pay its bills. That includes funding for social safety net programs, interest on the national debt, and salaries for troops. While the debt ceiling debate often elicits calls by lawmakers to cut back on government spending, raising the debt ceiling does not authorize any new spending and in fact, simply allows the U.S. to finance existing obligations.
Wrangling with the national budget is an ongoing process, and raising the debt ceiling is often a part of it. It appears this fall that addressing the debt ceiling has tangled with efforts to pass a reconciliation bill such that discussions of additional spending through reconciliation and infrastructure packages have distracted a bit from ensuring we have things in line to pay for those programs and debts already existing. Reconciliation (which is a budget tool that requires only simple majority vote) could be used to raise the debt ceiling. However, that has consequences (one of which is TIME--and we do not have it before the government defaults on their loans), and it is NOT the intent or focus of the Democrat use of reconciliation right now (it is to pass the Biden agenda of Build Back Better). So what is the way forward? Bipartisan work on the debt ceiling is the most desirable but does not appear likely. Quite frankly, nobody in Washington appears to know how this will work out. It most definitely can, but the how is still very much in question. 

Infrastructure and Build Back Better (aka “hard” and “soft” infrastructure bills)

New timeline for passage of each of these bills is October 31. Gone is the $3.5 trillion price tag for Build Back Better. It appears that $2.2 trillion may be the new cost, but what is included is still under negotiation. Discussions now are not so much about the amount as they are about determining the priority programs that must make it into a trimmed-down package. There is a broader debate inside the Democratic Party about whether to trim the scope of individual programs, cut some altogether, or dial back their duration. While it would be great to get some priorities “started”--for issues such as home & community-based services (HCBS), scaled back spending provided for just a temporary duration makes it less likely state Medicaid agencies will be able to invest in both increasing direct care workforce and increasing access/ reducing waitlists. If we thought September was intense in Washington, October is shaping up to be just as harrowing! Buckle up!

Impact for CYSHCN? There is still time to raise your voices and share stories about the ways investment in any of the “hard” infrastructure proposals (roads, technology, etc.) or “soft” infrastructure proposals (HCBS, continuous eligibility and enrollment, paid medical leave, etc.) are important to your CYHSCN and families. 
Congressional Request for Information: Bipartisan Mental Health Legislation
Congress is looking for ways to address the growing mental health crisis that existed before COVID-19 and has been exacerbated by the pandemic. Last week, Sen. Ron Wyden (D-OR) and Sen. Mike Crapo (R-ID), Chair and Ranking Member of the Senate Finance Committee sent out this request for information. These senators are particularly interested in evidence-based solutions and ideas to enhance behavioral health care in the following areas: a) strengthening the workforce; b) increasing integration, coordination, and access to care; c) ensuring parity between behavioral and physical health care; d) furthering the use of telehealth; and e) improving access to behavioral health care for children and young people. They are also seeking input on improving reimbursement mechanisms and financing behavioral health care incentives.

The full letter is here. Responses are due by November 1, 2021 and can be sent to mentalhealthcare@finance.senate.gov.
CMS guidance to Medicaid Officials: Two recent State Health Official letters of interest for CYSHCN
Updated Guidance Related to Planning for the Resumption of Normal State Medicaid, Children’s Health Insurance Program (CHIP), and Basic Health Program (BHP) Operations Upon Conclusion of the COVID-19 Public Health Emergency 

There is growing concern that if the public health emergency ends in 2021, eligible beneficiaries are at risk of losing coverage if states must complete pending work (a growing backlog) in a compressed timeframe because states would have less time to conduct outreach and implement. In recognition of these concerns and the need for guidance and preparation, CMS issued another State Health Official (SHO) letter (on August 13, 2021) that outlines policy changes CMS is making to better support states as they address the large volume of pending eligibility and enrollment actions they will need to take after the public health emergency (PHE) ends and minimize beneficiary burden. While this letter will assist states in their planning efforts for the eventual end of the PHE, it does not signal nor confirm when the federal PHE declaration will end.

Key revisions to December 2020 SHO letter include: Extending the timeframe for states to complete pending eligibility and enrollment actions to up to 12 months after the month in which the PHE ends and Completing an additional redetermination for individuals determined ineligible for Medicaid during the PHE.

And another SHO letter…Habilitation Services

Remote learning has made it challenging for children with disabilities who receive Medicaid-covered services at school to get the services they need. As of August 30, states now can cover habilitation services for students who are enrolled in a section 1915(c) waiver and/or 1915(i) program who are also learning remotely all or part of the time, if schools are unable to provide those services. For example, schools may be unable to deploy personnel to meet the needs of each individual child participating in remote education. CMS recognizes the significant advances in vaccination rates across the country, including for school-aged children eligible to be vaccinated. As schools return to in-person learning, CMS expects habilitation services will be available through local educational agencies and no longer eligible for coverage under Medicaid. However, to the extent necessary given local conditions, states may choose to avail themselves of this flexibility where services are, in fact, not available through the local educational agency. Local educational agencies must prioritize use of funding available in the American Rescue Plan, prior to indicating an inability to provide covered habilitation services. 
Report: Strengthening Medicaid Managed Care to Improve Care of CYSHCN
Written in partnership by NASHP and the Catalyst Center, this mini-brief describes how such partnerships between Title V, Medicaid agencies and Medicaid Managed care can contribute to reductions in duplication of services, en­hanced care coordination efforts, and the development of cross-agency programmatic supports to meet the physical, social, emotional, behavioral, and socioeconomic needs of Medicaid-enrolled CYSHCN and their families.
National Association of Medicaid Directors: Medicaid Forward and Long-Term Services and Supports (LTSS)
Recognizing that because Medicaid is well-positioned to make meaningful contributions to our national recovery from the pandemic, NAMD convened a series of executive workgroups to identify concrete, actionable ways that state Medicaid administrators can and are creating a healthier, stronger American future. The key areas where pandemic challenges are greatest: mental health and substance abuse, access to health care for children, and supports for people in need of long-term care. Previous reports, children’s health and behavioral health, can be found here. Last week the LTSS report was released.
No Surprise Medical Bills
On September 30, 2021, the Department of Health and Human Services (HHS), the Department of Labor, and the Department of the Treasury (collectively, the Departments), along with the Office of Personnel Management (OPM), released an interim final rule with comment period, entitled “Requirements Related to Surprise Billing; Part II.” This rule is related to Title I (the No Surprises Act) of Division BB of the Consolidated Appropriations Act 2021, and establishes new protections from surprise billing and excessive cost-sharing for consumers receiving health care items/services. The consumer protections in these rules will take effect starting January 1, 2022.

In conjunction with the release of this interim final rule, the Departments and OPM launched a website focused primarily on providing general information about No Surprises Act provisions. It will include a federal portal for organizations to apply to become certified independent dispute resolution entities and for providers and payers to participate in the federal independent dispute resolution process.
The U.S. Department of Health and Human Services' (HHS) Office for Civil Rights (OCR) issued guidance to help the public understand when the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule applies to disclosures and requests for information about whether a person has received a COVID-19 vaccine. Very clear and helpful!
Telehealth reports and webinar of Interest
Recently, HHS Office of the Inspector General (HHS-OIG) released two new telehealth reports, both related to the use of telehealth to deliver behavioral health services to Medicaid beneficiaries. HHS-OIG breaks up their study into two reports:

The reports are both based on surveys HHS-OIG conducted with Medicaid directors from 37 states, as well as various stakeholders, in early 2020. The surveys focused on telemental health delivery through MCOs, however, most stakeholders focused on general telehealth issues in their responses.

Webinar: Medicaid & Permanent COVID-19 Telehealth Policies
Friday, Oct 8, 2021 11:00 am PST
Presented by the Center for Connected Health Care Policy: The National Telehealth Policy Resource Center. Policymakers on the federal and state level continue to decide which of the temporary telehealth policies to keep after the public health emergency is over. This webinar will focus on the permanent telehealth policy changes Medicaid programs have made and what went into those decisions.

Webinar: Engaging and Enrolling: Countering the Chilling Effect of "Public Charge" to Help Latino Children Get Medicaid and CHIP Coverage
Wednesday, Oct 13, 2021 2-3:30 pm EST
This webinar, presented by the Connecting Kids to Coverage national campaign, will feature an analysis of recent data to raise awareness about the increase in uninsurance rates for Latino children, outreach strategies to effectively target this population, and a new resource available on InsureKidsNow.gov for organizations working with immigrant families. The webinar will also address recent federal guidance to inform states and stakeholders that the 2019 Public Charge Final Rule was vacated and is no longer in effect. 

Webinar speakers feature:

  • Sarah Lichtman Spector, Director, Division of Medicaid Eligibility Policy, Center for Medicaid & CHIP Services, Centers for Medicare & Medicaid Services
  • Amanda Baran, Chief of Policy and Strategy, U.S. Citizenship and Immigration Services, Department of Homeland Security
  • Kelly Whitener, Associate Professor, Georgetown University McCourt School of Public Policy’s Center for Children and Families
  • Patrick Bresette, Children’s Defense Fund – Texas
  • Jenn Kerr, Outreach Contractor, Connecting Kids to Coverage National Campaign, Porter Novelli Public Services
Recent ACL Grants of Interest to CYSHCN
National Healthcare Transition Resource Center

The Administration for Community Living has awarded a new Project of National Significance: A National Healthcare Transition Resource Center (NHCTRC) for youth with intellectual and developmental disabilities (ID/DD). Family Voices is pleased to receive this five-year funding award. The Center will provide healthcare transition training and resources to a broad and diverse group of youth and young adults with ID/DD, ages 12-26, their families, and the professionals who serve them. The Center will have a national Youth Steering Committee that guides all project activities, as well as a National Advisory Committee composed of representatives of organizations committed to the empowerment of youth to direct and manage their healthcare transitions.
The work of the Center will be carried out through a collaborative partnership of Family Voices with the National Alliance to Advance Adolescent Health/Got Transition, SPAN Parent Advocacy Network in New Jersey, the University of Missouri-Kansas City and the Waisman Center at the University of Wisconsin-Madison.

Community of Practice: Disability and Aging

ACL has awarded a new Project of National Significance on “Bridging the Aging and Disabilities Networks” to the National Association of Councils on Developmental Disabilities (NACDD) in the estimated amount of $398,384.00 every year for five years beginning September 1, 2021.

The grantee will develop a Community of Practice designed to build capacity across and within states’ aging and disability networks that will focus on creating culturally competent systems to support individuals with intellectual and developmental disabilities (ID/DD) and their families to improve planning to address their individual needs, goals, and preferences across the lifespan. 

NACDD is partnering on the project with the Institute on Disability and Human Development at the University of Illinois Chicago, Lurie Institute for Disability Policy at Brandeis University, The Arc, and National Association of Area Agencies on Aging.

National Technical Assistance Center on Grandfamilies and Kinship Families to Generations United
With funding from the American Rescue Plan Act of 2021, ACL has awarded a new 5-year cooperative agreement to Generations United (GU). In partnership with five national organizations (USAging; the National Caucus and Center on Black Aging; the National Indian Child Welfare Association; ZERO TO THREE; and Child Trends) and an array of subject matter experts, GU will lead the creation of the first National Technical Assistance Center on Grandfamilies and Kinship Families (NTAC). The development of the NTAC directly aligns with the mission of the ACL’s Advisory Council to Support Grandparents Raising Grandchildren (SGRG council).

New Funding for UCEDDs

ACL is announcing a number of new grants to University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs), including:

  • Community-based transition planning and implementation grants to help people with intellectual and developmental disabilities (IDD) with transitions, including from school to college or work in the community and from pediatric to adult health care providers.

  • National Training Initiative grants to help states more effectively address barriers experienced by people with IDD and co-occurring mental/behavioral health issues.

National Training Initiative to Support People with IDD Experiencing Co-Occurring Mental/Behavioral Health Issues. These grants will build on the work of ACL's Mental Health and Developmental Disabilities National Training Center with a specific focus on training multi-disciplinary teams comprised of state agency staff, program administrators, service providers, and other relevant stakeholders to create more seamless cross-systems collaboration.

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.