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Washington DC Update 6/24/22
Legislative Updates
Achieving a Better Life Experience (ABLE) Age
The ABLE Age Adjustment Act was included in the Enhancing American Retirement Act Now (EARN) Act. The EARN Act was considered in Senate Finance Committee markup session on June 22, 2022 and the ABLE portion of the underlying act passed without amendment.

The ABLE Age Adjustment Act ill amend the Internal Revenue Code to adjust the age of eligibility of beneficiaries of ABLE accounts from the onset of disability before age 26 to onset before age 46. Currently, only individuals who have a qualifying disability prior to age 26 are eligible to open an account in an Achieving a Better Life Experience (ABLE) plan. More info HERE

Senate Finance Releases Draft Text Of Youth Mental Health Bill
A bipartisan group of senators on the Finance Committee, including Chair Wyden and Ranking Crapo, released a discussion draft of policies that seek to bolster youth mental health care. Click here to read Thorne Run Partner's analysis of this legislation.

One section of note for CYSHCN:

Oversight of EPSDT — A provision of today’s discussion draft would require the Secretary of HHS to: (1) review state implementation of the requirements for providing EPSDT under Medicaid, including with the respect to the provision of services under Medicaid managed care; (2) identify gaps in state compliance with current requirements; (3) provide technical assistance to such states to improve compliance; and (4) issue guidance to states on the Medicaid coverage requirements for providing EPSDT services, including best practices. The Secretary of HHS will then be required to issue a report to Congress on the findings of the Department’s review of state compliance with the requirements for providing EPSDT services under Medicaid.
Here are 2 helpful blogs from Georgetown Center for Children and Families:

Electrical Stimulation Devices Ban
The U.S. House of Representatives voted 392 to 28 last week to approve the Food and Drug Amendments Act, a broad bill reauthorizing programs at the Food and Drug Administration. Tucked inside the legislation is a provision that would put an end to the use of what are known as electrical stimulation devices, which send shocks through electrodes attached to the skin in order to condition people not to engage in self-injurious or aggressive behaviors. Last Friday, the Senate HELP committee passed an FDA bill out of committee that included an amendment (offered by Sen. Murphy) which bans the use of electrical stimulation devices. While this is progress, it is important to note that it has been nearly impossible to ban their use without legislation (the Department of Justice and Food and Drug Administration have both tried). For more information, consider reading this Disability Scoop article on the topic.

Call for Government Accountability Study Regarding Barriers People with Disabilities Face Accessing Healthcare
Senators Tammy Duckworth (D-IL), Patty Murray (D-WA), Chris Murray (D-CT), Bob Casey (D-PA), Kristen Gillibrand (D-NY), Elizabeth Warren (D-MA), and Sherrod Brown (D-OH) sent a letter to the US Government Accountability Office (GAO), the investigative arm of Congress, to request that the GAO conduct a comprehensive study into the barriers that people with disabilities, of all backgrounds, experience in accessing healthcare including reproductive healthcare, including access to medical treatment, services, equipment and more. They wrote that, despite antidiscrimination laws, "[t]he lack of accessible healthcare contributes to and exacerbates health disparities experienced by people with disabilities." In addition, the letter notes that while current research about health disparities indicates "significant" racial and gender gaps, it fails to fully explore the issue's severity. The letter includes a request to answer specific research questions related to healthcare facility accessibility, federal data collection about accessibility issues, and financial barriers to accessing healthcare. In the letter, the Senators also request an investigation about potential remediation efforts, such as healthcare provider training, the prevalence of people with disabilities in the healthcare workforce, and federal technical assistance about healthcare provider legal compliance requirements. Read the letter to the Government Accountability Office.
From the Administration
HHS OCR: Audio Only Telehealth Guidance
The U.S. Department of Health and Human Services (HHS), through its Office for Civil Rights (OCR), is issuing guidance on how covered health care providers and health plans can use remote communication technologies to provide audio-only telehealth services when such communications are conducted in a manner that is consistent with the applicable requirements of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy, Security, and Breach Notification Rules, including when OCR’s Notification of Enforcement Discretion for Telehealth - PDF is no longer in effect.

This guidance will help individuals to continue to benefit from audio-only telehealth by clarifying how covered entities can provide these services in compliance with the HIPAA Rules and by improving public confidence that covered entities are protecting the privacy and security of their health information. The Guidance on How the HIPAA Rules Permit Health Plans and Covered Health Care Providers to Use Remote Communication Technologies for Audio-Only Telehealth may be found at HERE

CMS: Medicaid and CHIP Continuous Enrollment Unwinding: What to Know and How to Prepare, A Partner Education Monthly Series
This monthly webinar series will provide stakeholders with information to prepare for the Medicaid and CHIP continuous enrollment unwinding. Register for the series HERE.

Jul 27, 2022 12:00 PM
Aug 24, 2022 12:00 PM
Sep 28, 2022 12:00 PM
Oct 26, 2022 12:00 PM
Dec 7, 2022 12:00 PM
A recording, transcript, and the slide deck from the webinar (as well as other calls on interest) can be accessed on the CMS National Stakeholder Calls webpage
The following resources were shared during the May 25 call: Enrollment Unwinding: What to Know and How to Prepare and may be of interest and F2F use in your state efforts to prepare for the PHE Unwinding:

  • Unwinding Homepage: The centralized location where states and stakeholders can learn more about Unwinding and access resources to help them plan and prepare.
  • Medicaid and CHIP Beneficiary Resource Page: A webpage designed for people enrolled in Medicaid and CHIP to help them prepare to renew their coverage when states restart eligibility renewals after the end of the Public Health Emergency.
  • Unwinding Communications Toolkit: The Unwinding Communications Toolkit provides key messages and materials for states and stakeholders to use when communicating with their networks about Medicaid and CHIP Continuous Enrolment Unwinding. The toolkit is available in both English and Spanish.

Related Unwinding blog of interest: 1902(e)(14) waiver authorities
To support states in their efforts to successfully “unwind” from the Medicaid continuous coverage requirement and resume normal eligibility and enrollment operations, the Centers for Medicare & Medicaid Services (CMS) has made available a number of time-limited 1902(e)(14) waiver authorities. Consider reading this Manatt Health blog for a digestible overview as well as links to more detailed information and the State Health Official Letter.

In Case You Missed It: COVID Vaccines for 0-5!!
CDC Director Rochelle P. Walensky, M.D., M.P.H., endorsed the Advisory Committee on Immunization Practices’ (ACIP) recommendation that all children 6 months through 5 years of age should receive a COVID-19 vaccine. This expands eligibility for vaccination to nearly 20 million additional children and means that all Americans ages 6 months and older are now eligible for vaccination. 

In Case You Missed It: Center for Medicaid and Medicare Services Issue Letter to State Medicaid Directors on Utilizing Increased FMAP Funding
On May 13, 2021, the Center for Medicaid and Medicare Services issued a letter to State Medicaid Directors. Section 9817 of American Rescue Plan Act of 2021 (ARP) provides qualifying states with a temporary 10 percentage point increase to the federal medical assistance percentage (FMAP) for certain Medicaid expenditures for home and community-based services (HCBS). “The purpose of this letter is to provide guidance to states on the implementation of section 9817 of the ARP, as well as to describe opportunities for states to strengthen the HCBS system in response to the COVID-19 Public Health Emergency (PHE), increase access to HCBS for Medicaid beneficiaries, adequately protect the HCBS workforce, safeguard financial stability for HCBS providers, and accelerate long-term services and supports (LTSS) reform under section 9817 of the ARP.” States must initially use the increase in federal funds to supplement, not supplant, existing state funds. The Center for Medicaid and Medicare Services recognized the complexity of this policy and has since extended the deadline by an additional year, giving states until March 31st, 2025 to spend the federal funds.

In Case You Missed It: AHRQ National Advisory Opportunity
Agency for Healthcare Research and Quality (AHRQ) is currently seeking nominations for our National Advisory Council (NAC) and to invite you to consider applying or to encourage others from your organization to do so.

The NAC advises the AHRQ Director and the Secretary of HHS on activities proposed or undertaken to carry out AHRQ's statutory mission. We are seeking members who represent the breadth of healthcare delivery, policy making and research, and who also reflect the diversity of systems and settings where healthcare services are provided.

In addition, we strive to ensure that NAC members and their institutions are geographically representative of the U.S. as a whole and can address the needs of underserved communities and populations, including racial and ethnic minorities. NAC members meet three times a year.

The application process is simple: all that’s required is to submit a resume and a statement that you are willing to serve. Recommendations are accepted, but are not required. However, the application process is a long one! Applicants should expect to hear if they are selected by spring of 2023. 

The deadline for applications is Tuesday, July 5, 2022. More information is provided in the official notice that was published in the Federal Register soliciting nominations. Nominations should be sent to the attention of Ms. Jaime Zimmerman at NationAdvisoryCouncil@ahrq.hhs.gov.
Reports, briefs and a Nomination of Interest
Report: Higher Wages for Home Healthcare Workers
The Economic Policy Institute has written a great report packed with data and mounts arguments as to why and how states must set higher wage benchmark to not only tackle current home health workforce crisis but also meet the need for 1 million more home health care workers by 2029.

NOTE: Data and strategies in this report could be used in all of your state efforts with state agencies and legislature to tackle this crisis. These resources may also be useful in these efforts:

White Paper: Hopes and Fears for 988
This year will see the rollout of “988,” the new three-digit number for calls to the National Suicide Prevention Lifeline. 988 has been touted as the new “mental health 911.” The federal government and many states and localities are touting 988 as an alternative to and resource for the 911 system, to reduce the number of calls involving people with mental health issues to which the police are sent. We appreciate support for 988 as part of a more effective response to people experiencing mental health crises. But 988 alone is not enough. This white paper written by the Bazelon Center for Mental Health proposes a vision for a truly community-based response to people with urgent behavioral health needs. 988 can be part of this response, but is only a part of what we really need.

Families USA Initiative: People First Care
Families USA is excited to announce the launch of our People First Care initiative to push for a redesigned health system that promotes affordable, patient-focused care. Our first paper, “Our Health Care System Has Lost Its Way,”  discusses the profound dysfunction in our health care system and lays out a new policy agenda to address that dysfunction. 

Child Trends Brief: Adverse Police Contact
For many children and youth—especially those from communities of color—interactions with police and law enforcement officers constitute an “adverse police contact,” which we define as a source of physical and emotional harm that may have long-lasting effects. Adverse police contact is most likely when a young person’s interaction with police involves use of force or arrest, or when it results in incarceration for the young person or a loved one. Broadly, this adverse experience can be mitigated via thoughtful and deliberate actions by police, practitioners, community members, researchers, and policymakers. This brief features recommendations for healing the wounds left by adverse police contact.

NASHP: Nominate a State Health Policy Rising Star!
Do you know an outstanding state health policymaker who has up to seven years of experience and has demonstrated exceptional leadership, innovation, and commitment to promoting quality health policy? Help NASHP recognize rising leaders by nominating them for NASHP’s 2022 Rising Star Award!

Note: Nominating a state policymaker for such an award could help foster or deepen their relationship with an F2F and promote better policies for CYSHCN and families!!

Starting in 2015, NASHP recognized new state health policy professionals working for state governments with our Rising Star award. The award strives to promote the accomplishments of those working in the field with seven years experience or less who have demonstrated exceptional leadership, innovation, and commitment to promoting good state health policy.

The award will be presented at #NASHPCONF22, September 12-14, 2022 in Seattle, Washington. The winner will receive an all-expenses paid trip to the conference.

Nominations are due by Friday, July 15. Nominations must be made by a current state government employee.

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.