Happy New Year! Both houses of Congress are back in session this week after a Holiday break. Build Back Better is… no one is sure what it is or where it stands. Is it alive? Is it dead? It appears that Build Back Better (BBB) is on “pause” now as committees turn to other work, notably voting rights and children’s mental health. Reports indicate that Senator Manchin continues to negotiate with the White House and is open to re-engaging on Build Back Better if certain provisions are removed.

So what does a pause on BBB mean for CYSHCN and families? There is still time to raise your voice and share your story about why you need affordable child care, HCBS, Medicaid expansion, paid medical leave, permanent Medicaid funding for territories, expanded maternal health care, permanent CHIP, and so much more. The pause is on formal policymaking, but there are still lots of discussions and negotiations occurring. Sharing a story and educating members of congress about how access to these issues affects your life is critical.

In the meantime, the Senate Finance committee shifts focus to children’s mental health and other business. Senators Wyden and Crapo have invited Surgeon General Vivek Murthy to join a Finance Committee hearing to discuss youth mental health.

If you recall, the Senate Finance Committee issued a request for information about children’s mental health last year. The Committee sought input on approaches to enhance behavioral health care in specific areas: Strengthening the workforce; Increasing integration, coordination, and access to care; Ensuring parity between behavioral and physical health; furthering the use of telehealth; and Improving access to behavioral health for children and young people.

Additionally, the Surgeon General issued an advisory on protecting youth mental health.

Senate Democrats are also considering new voting rights legislation; unfortunately, as with many other issues, there does not appear to be clear agreement. To pass this legislation, Democrats will also need to reform filibuster rules to enable the Voting Rights proposal to pass with simple majority. Disagreement amongst the Democrats begins with the issue of filibuster reform. Senator Schumer has encouraged consideration of the Voting Rights legislation and corresponding filibuster reform before January 17, 2022. Consider reading this article if you want to learn more: The fate of the filibuster: Your guide to the changes Dems really want.

Last fall, The John Lewis Voting Rights Advancement Act of 2021 (S. 4 and HR.4) was introduced in both the House and Senate. A summary of the Act can be found here (from co-sponsor Senator Leahy) and here (from Representative Horsford).

How does Voting Rights legislation impact CYSHCN and families? Some of the voting restrictions that have been proposed and enacted around the country directly affect the ability for those with disabilities to vote. This type of legislation is critical to issues of access and civil rights for those with disabilities.

In effect as of January 1, 2022, the protections, implemented under the No Surprises Act, ban surprise billing in private insurance for most emergency care and many instances of non-emergency care. They also require that uninsured and self-pay patients receive key information, including overviews of anticipated costs and details about their rights.

This Georgetown Center for Health Insurance Reform blog post breaks down what CYSHCN and families need to know about the No Surprises Act.

Starting January 15, most people with a commercial health plan will be able to receive at-home over-the-counter COVID-19 diagnostic tests authorized by the U.S. Food and Drug Administration (FDA) at no cost, either through reimbursement or free of charge through their insurance. This applies whether you purchased your health plan on your own or whether you get health insurance through your job. Check out this FAQ document from CMS for more information. State Medicaid and Children’s Health Insurance Program (CHIP) programs are currently required to cover FDA-authorized at-home COVID-19 tests without cost-sharing.

This Department of Labor FAQ offers more details as to diagnostic testing and related issues under the ACA Implementation of the Families First Coronavirus Act.

The U.S. Access Board has reopened its public comment period on advisory guidelines for aircraft onboard wheelchairs. As indicated in a published notice, the Board seeks information on onboard wheelchair loads and caster wheels for use in finalizing its voluntary guidelines. The Department of Transportation also solicits further information on its performance standards for onboard wheelchairs as outlined in a separate meeting notice. Individuals may submit comments to the Board via any of the following methods:

Office of Technical and Information Services

U.S. Access Board

1331 F Street NW, Suite 1000

Washington, DC 20004-1111

View the docket to read background documents and comments received.

On December 31, the Federal Communications Commission (FCC) launched the Affordable Connectivity Program (ACP). This program, created by Congress in the Infrastructure and Jobs Act, is a longer-term replacement for the Emergency Broadband Benefit (EBB) program. This investment in broadband affordability will help ensure households can afford the internet connections they need for work, school, health care, and more. The FCC also launched a toolkit of materials for partners to download and customize to meet their needs. More materials will be added in the coming weeks.

The ACP provides a discount of up to $30 per month toward internet service for eligible households and up to $75 per month for households on qualifying tribal lands. Eligible households can also receive a one-time discount of up to $100 to purchase a laptop, desktop computer, or tablet from participating providers if they contribute more than $10 and less than $50 toward the purchase price.

Enrollment in the ACP is now open for households with at least one member qualifying under any of the following criteria:

Last month, the Office of Management and Budget published the Fall 2021 Unified Agenda which outlines the Biden Administration’s regulatory agenda for 2022. The Unified Agenda includes several proposals that would impact the Medicaid program, including regulations to streamline eligibility and enrollment processes, new mandatory Core Set reporting requirements, and new rules around monitoring and assuring access in Medicaid and CHIP. You can read National Association Medicaid Director’s memo on the Unified Regulatory Agenda here. 

On Dec 7, CMS released a “rule of construction” granting states additional flexibilities in how they determine financial eligibility for home and community-based services (HCBS). States will now have the option to target or tailor income and resource disregards for people who are eligible for (or seeking coverage of) HCBS under section 1915(c), (i), (k) and 1115 authorities. The option grants states broader discretion in applying higher effective income or resource standards to select cohorts of individuals, based on their need for HCBS.

On Dec 8, CMS released their 2021 Medicaid and CHIP Scorecard. The Medicaid and CHIP Scorecard provides information about federal and state performance in administering the Medicaid program across three key pillars: health system performance, state administrative performance, and federal administrative performance. This year’s Scorecard includes updated data, but there are not major substantive changes in the release.

This scan, conducted by Center for Health Care Strategies, highlights examples of strategies in 11 states ― Colorado, Iowa, Illinois, Indiana, Massachusetts, Minnesota, Nevada, New Jersey, Tennessee, Washington State, and Wisconsin ― aimed at strengthening the direct care workforce through legislation, American Rescue Plan Act funding, and training. The scan is part of a report, Forging a Path Forward to Strengthen Michigan’s Direct Care Workforce, developed for the Michigan Department of Health and Human Services, however, information in this report can apply to any state interested in strengthening the direct care workforce.

In this brief, the Vaccine Equity Cooperative (Health leads, NACHW, Partners in Health, and Social Current), provide recommendations based on lessons learned from shared experiences collaborating at the local, state, and federal level to respond to COVID-19 and address health disparities. The recommendations focus on four key pillars of health equity that reflect the challenges faced by implementers during the COVID-19 response: Access, Data, Power, and Resources.

The traction gained by telehealth during the pandemic has raised a number of policy questions. One of the most frequent issues raised revolves around telehealth’s impact on quality of care, but even more so, how to measure quality of care delivered via telehealth. The National Quality Forum convened a stakeholder group between January and October 2021 to create a framework for assessing telehealth impacts on the healthcare system and health outcomes. The final report, Rural Telehealth and Healthcare System Readiness Measurement Framework, recommends primary areas for measurement, such as access and equity, existing measurements that can be applied, and concepts to continue moving forward.

Georgetown University Center for Children and Families Say Ahhh blog post provides a comprehensive overview of the CMS Guidance on the new Medicaid Mobile Crisis Service Option. Notably, the guidance from CMS touches on children and youth in a number of areas, such as partnership with schools, youth-focused mobile crisis models, text and chat technology, and the role of early and periodic screening, diagnostic and treatment (EPSDT).

The RAISE Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren will hold their first joint meeting on January 25, 2022 from 12:30pm-4:30pm EST. The meeting is open to the public and does not require registration. Information will be available on RAISE and SGRG websites.

January is LGBTQ+ History Month! Many individuals identify as lesbian, gay, bisexual, or transgender in the disability community. This infographic by the Center for American Progress, Movement Advancement Progress, National Center for Lesbian Rights, and National LGBTQ Taskforce highlights data and statistics that can be used to raise awareness or inform policy and advocacy.

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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.