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.

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.

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. 

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 [email protected].

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.

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. 

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.

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.

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!

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.

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.

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. 

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).

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

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.

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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.