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Washington, DC Update 2/8/23
Legislative Updates
Energy & Commerce Hearing
Last week, the House Energy and Commerce Committee, chaired by Representative McMorris Rogers (R-WA), held its first hearing titled Lives Worth Living: Addressing the Fentanyl Crisis, Protecting Critical Lifelines, and Combatting Discrimination Against Those with Disabilities. During the hearing, Chair McMorris Rogers urged the committee to ban the use of Quality-Adjusted Life Years (QALYs) by passing the Protecting Health Care for All Patients Act (H.R. 485). The bill would ban the use of QALYs in health care. 

An article in POLITICO notes that Republicans and some Democrats on the Energy and Commerce Health Subcommittee found potential common ground at the hearing around the proposed bill. “Families need hope, not a government that has power over life and death,” Chair McMorris Rodgers said. The subcommittee’s ranking member, Rep. Anna Eshoo (D-CA), also said she supports ending use of the metric because it doesn’t give equal weight to the lives of people with disabilities. Click here to read the article.
QALYs are a measure used to prioritize patient care, and they put lesser value on drugs and treatments that extend the lives of people with disabilities as compared to the lives of people without disabilities or chronic illnesses. You can learn more about QALY in this report by the National Council on Disability.

Better Care Better Jobs Act
  • Increase Medicaid funding for Home and Community Based Services (HCBS) with a 10 percent increase in the federal match
  • Increase funding for administrative activities
  • Provide more benefits for direct care workers
  • Improve oversight
  • Make spousal impoverishment protections permanent, and
  • Make the Money Follows the Person program permanent.
The bill will improve HCBS for millions of Americans and their families, and direct support professionals. The bill has been referred to the Senate Finance Committee.
Unwinding of the Public Health Emergency
CMS Information and Resources for the Unwinding

NASHP PHE Unwinding Resources
Visit this link for all the resources and blogs by the National Academy of State Health Policy (NASHP) on the unwinding of the Public Health Emergency.

Kaiser Family Foundation (KFF) PHE Unwinding Resources
KFF Webpage
The end of the COVID-19 public health emergency (PHE) will have numerous implications for the many policies that were temporarily waived or modified to help respond to the pandemic. This page includes key KFF resources examining how the eventual expiration of the PHE will affect the health care system.
KFF Brief
This brief provides an overview of the major health-related COVID-19 federal emergency declarations that have been made, and summarizes the flexibilities triggered by each in the following areas:

This is not an exhaustive list of all federal policy and regulatory provisions made in response to COVID-19 emergency declarations.

From the Administration
CMS: Direct Care Workers Online Training and Resources
Direct care workers, also referred to as direct service workers, provide essential supports to people with intellectual and developmental disabilities, physical disabilities, and behavioral health needs. The Centers for Medicare & Medicaid Services (CMS) has released an online training course and a series of resources that offer strategies and information on self-direction of home and community-based services, strengthening the direct service workforce (DSW) in rural areas, and emerging strategies for states.

CMS: 2022 Accomplishments and Key Advances in Health Care
Last month, CMS started the new year by highlighting key 2022 Accomplishments about the agency’s focus on continuous operational improvement and setting the benchmark for health-system transformation. CMS has made tremendous progress on its six strategic pillars: advancing health equity, expanding access, engaging partners, driving innovation, protecting programs, and fostering excellence, as well as the 13 cross-cutting initiatives driving results across the agency.

HHS: Early Care and Education Workforce Center
The U.S. Department of Health and Human Services (HHS), through the Administration for Children and Families (ACF), announced the launch of the new National Early Care and Education Workforce Center (the ECE Workforce Center). The ECE Workforce Center is the result of a $30 million investment to support research and technical assistance for states, communities, territories, and tribal nations to improve the recruitment and retention of a diverse and qualified workforce across early care and education programs. Read more about the initial plans for the Center HERE.

ACL: Webinar “Getting the Services You Need from the Waiver: The Participant-Centered Service Planning and Service Delivery"
As part of a series on strengthening advocacy in the Home and Community Based Services (HCBS) Settings rule, ACL will host a webinar to review:
  • Appendix D – Participant-Centered Planning and Service Delivery in the HCBS Waiver application and how it impacts the quality of services individuals receive
  • State responsibilities related to service planning and delivery, and
  • How stakeholders can have an impact on the application.
We will also hear about Colorado's effort to design participant-centered planning across their service system.
  • Jill Jacobs, Commissioner, Administration on Disabilities, ACL
  • Nancy Thaler, Senior Policy Advisor, ACL
  • Lori Thompson, Care & Case Management System Improvement, Colorado Department of Health Care Policy and Financing

The webinar is Tuesday February 21, 2023 from 3-5 pm EST. Live captioning will be provided. The webinar will have capacity for 1,000 attendees on a first come, first serve basis. A video replay and transcript will be made available following the event.
To join the webinar, please use the link and passcode below, or dial in via phone:

Passcode: ACLWeb@1
Dial-in numbers: 669-254-5252 or 646-964-1167 or 415-449-4000 or 551-285-1373
Webinar ID: 161 434 6725
Passcode: 11897434
State Policies of Interest to CYSHCN
Manatt Blog: Waiver for Reentry Services for Justice-Involved Youth & Adults
On January 26, 2023, the Centers for Medicare & Medicaid Services (CMS) approved California’s request to amend the California Advancing and Innovating Medi-Cal (CalAIM) Section 1115 demonstration. A centerpiece of the amendment is approval for California Medicaid to provide a targeted set of Medicaid services to youth and adults in state prisons, county jails, and youth correctional facilities for up to 90 days prior to release. By providing reentry services to Medicaid-enrolled individuals who are incarcerated, California aims to build a bridge to community-based care for justice-involved enrollees, offering them services to stabilize their physical and behavioral health conditions and establishing, prior to release, a reentry plan for their community-based care.

With this 1115 demonstration, California will directly test and evaluate its expectation that providing targeted reentry services to Medicaid-eligible individuals will increase coverage and continuity of coverage, improve care transitions as individuals reenter the community, and reduce morbidity and mortality for beneficiaries post-release. Read Manatt’s blog about the new waiver.
Other CYSHCN Policy-related Materials
Blogs: Georgetown Center on Health Insurance Reforms
A record number of people have signed up for health insurance through the Affordable Care Act’s marketplaces. This historic enrollment coincides with a new rule that fixes the “family glitch,” a former policy that blocked over 5 million people from accessing marketplace subsidies. In a post for the Commonwealth Fund’s To the Point blog, CHIR experts highlight the variety of activities undertaken by the ACA’s marketplaces to implement the family glitch fix.

In a new Perspectives piece for the New England Journal of Medicine, CHIR authors help readers navigate the United States’ patchwork system of health insurance coverage, where people’s access to services and level of financial protection — not to mention whether they have coverage at all — varies depending on their birthplace, age, job, income, location, and health status.

Emergency Pandemic Funding for HCBS for People with IDD: How States Used Appendix K to Increase Their Reimbursement Rates
This Council on Quality and Leadership study examined how states adjusted their reimbursement rates for Home and Community Based Services (HCBS) for people with intellectual and developmental disabilities (IDD) during the pandemic. 294 Appendix K waivers (March 2020 to April 2022) that applied to IDD HCBS were analyzed.
States increased reimbursement rates for 2,500 different HCBS services for people with IDD from March 2020 to April 2022. Reimbursement rate increases ranged from a 3.5% increase to a 160.7% increase, with an average rate increase of 23.3%. Respite reimbursement rates increased 31.5%.
The author noted "While increasing funding for other services, such as crisis and respite services, likely had a beneficial impact on families, more attention to family services in particular could help support family caregivers during the pandemic." It was also noted reimbursement rates appear to have been decreasing since April 2021. 
Read the blog about the study and explore links to other articles and resources about people with IDD.

Interagency Autism Coordinating Committee Releases a Draft of the Strategic Plan for Autism Research, Services, and Policy for 2021-2023
The Interagency Autism Coordinating Committee (IACC) has released a draft of their strategic plan for 2021-2023. The IACC is a Federal Advisory Committee that advises the U.S. Department of Health and Human Services on research and services related to autism. The IACC membership is autistic adults, family members of individuals with autism, researchers, clinicians, Federal officials, and leaders of advocacy organizations. The IACC is responsible for releasing a strategic plan that addresses research, services, supports, and public policies.  Read the draft of the strategic plan.

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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.