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Washington, DC Update 4/6/23
Legislative Updates
Congress is out for spring holidays. The House and Senate lawmakers will return for legislative business on Monday, April 17. 

Guardianship Bill of Rights
On March 30th, Senator Bob Casey (D-PA) introduced the Guardianship Bill of Rights Act (S. 1148). Guardianships are intended to be legal relationships established to protect people with disabilities and older adults, but often lead to loss of rights, abuse, fraud, and exploitation. This bill would establish a Guardianship and Other Protective Arrangements and Supported Decision-Making Council that would be responsible for promoting less restrictive arrangements for people living under, or being considered for, guardianships. The bill would also create a protection and advocacy agency focused on the rights of people being considered for, and living under, a guardianship. The bill is cosponsored by Senator John Fetterman (D-PA), Senator Elizabeth Warren (D-WA), and Senator Bernie Sanders (I-VT).

Educating versus Lobbying
As the F2F Education campaign gears up for the push to reauthorize the program, this AUCD one-pager may be helpful. It clarifies that sharing about the impacts of the F2F funding in your state is education and is permissible as an employee.

You can find other helpful AUCD Policy “How To” materials here.
Unwinding of the Public Health Emergency & Medicaid Continuous Coverage
AAP: Unwinding Resources
Check out these new resources jointly developing by AAP and Georgetown CCF, including state-based flyers in English and Spanish that can be shared with families.

State Health and Value Strategies (SVHS): How States are Operationalizing the Unwinding
In this new expert perspective series, State Health and Value Strategies will highlight examples of the work states are engaging in to prepare for and operationalize the unwinding of the continuous coverage requirement to minimize coverage losses. States are on different timelines for initiating Medicaid eligibility redeterminations following the end of the continuous coverage requirement on March 31, 2023, and therefore in different stages of the process. This new series aims to showcase strategies that other states may be interested in adopting and highlight how states are leveraging federal flexibilities. SHVS also has a one-stop resource page to support states as they plan for and implement unwinding.

Blog: Understanding Procedural Dis-enrollments
This blog by Georgetown CCF is helpful for understanding procedural dis-enrollments and why they happen.

Blog: Risk of Coverage Loss for Those with Disabilities - and What to Do About It
Consider reading this blog by Michael Atkins of The Arc with data about the real risk for people with disabilities losing coverage during the unwinding - and what to do about it.
From the Administration
ACL: Disability Cultural Competence in Health Care
As part of their Lunch & Learn webinar series, the Interagency Committee on Disability Research (ICDR) is hosting "Disability Cultural Competence in Health Care." During this webinar, attendees will hear about research projects and findings related to disability cultural competence, access, and inclusion. At the end of the presentation, there will a 15-minute Q&A session.

April 26, 2023 12-1pm EST. Register now to reserve your spot and to receive instructions for joining the webinar. Registration closes April 20.

U.S. Department of Labor: FMLA Fact Sheets
The U.S. Department of Labor has launched a webpage with resources to help family caregivers understand and exercise their rights to job-protected leave under the Family and Medical Leave Act (FMLA). The fact sheets include information about the FMLA for caregivers of someone with a serious health condition, an adult child with a disability, or for someone who is not a biological or legal parent but who was in the role of a parent when the family caregiver was a child.  Visit the website.
Other CYSHCN Policy-Related Materials of Interest
Georgetown CCF: More than 10 reasons Why Medicaid Work Requirements are Still a Bad Idea
This blog lays out the many reasons, including data and links to article or resources, for why Medicaid work requirements are not a good idea.

Georgetown CCF: Medicaid MCOs in CHIP
Some three million kids in states with separate CHIP programs are enrolled in Managed Care Organizations (MCOs). Who are those MCOs, and how are they performing for children? Unlike Medicaid, there is no publicly available national database that answers those questions.  This new brief attempts to fill that gap. Georgetown CCF used a variety of methods, including reviewing publicly available websites, CHIP annual reports, and Annual Technical Reports, to compile data for the 27 states with separate CHIP programs that use MCOs to manage these programs.

Some of their key findings include:
  • Of the seven million children enrolled in CHIP, about four million receive coverage through their state Medicaid programs; the remaining three million are covered through a separate CHIP program.
  • Currently, 34 states operate a separate CHIP program, either exclusively or in combination with enrolling CHIP children in Medicaid; 27 of these 34 states use MCOs to deliver covered services to CHIP children. The other seven use a fee-for-service delivery system.
  • Of the 154 MCOs contracting with the 27 separate state CHIP programs, 136 had parent companies that also contracted with the Medicaid program in the same state – a significant overlap in the context of the COVID-19 Public Health Emergency continuous enrollment policies which ended on April 1, 2023.

The major takeaway is that there is huge variation in the amount, quality, and accessibility of information available about the MCOs participating in CHIP. Read the whole report here.

NASHP: Behavioral Health Policy Academy
NASHP hosted a 12-month State Policy Academy on Rural Mental Health Crisis Services with five state teams selected through a competitive application process (Montana, South Carolina, South Dakota, Texas, and Wisconsin). State teams were composed of leaders in Medicaid, behavioral health agencies, rural health agencies, and other state officials involved in advancing cross-agency approaches. Read more here.

NOTE: Scroll down through the results to a link for a NSHP tracker of which states are funding Peer-to-Peer mental health services and how.

SVHS: Proposed Changes to Federal Standards for Collecting Race and Ethnicity
Medicaid agencies and most U.S. territories collect self-reported data on race and ethnicity from applicants during the eligibility and enrollment process through an optional question, and there is significant variation in how the data are collected and their quality. The U.S. Department of Health and Human Services (HHS) provides guidance, but does not mandate, that states use federal data collection standards when collecting race and ethnicity from Medicaid applicants. These standards were developed by the U.S. Office of Management and Budget (OMB) in 1977 and last revised in 1997. 

In June 2022OMB initiated a process to review and revise SPD 15. The administration convened the Federal Interagency Technical Working Group on Race and Ethnicity Standards (Working Group), and in February 2023, the Chief Statistician of the United States released an initial set of recommended revisions to the 1997 standards. These revisions are out for comment until April 12, and the revised standards are expected to be completed by summer 2024. Consider reading this article for a summary and overview of proposed changes.

National Center for Cultural Competence: Resources for Advancing Racial Equity
The Racial Equity Learning Community was developed to respond to the interests and needs of a Community of Practice (CoP) on Cultural and Linguistic Competence in Developmental Disabilities. Multiple resources were developed to support the CoP teams and other IDD organizations to use cultural and linguistic competence as key approaches to advance racial equity within systems of supports and services in states, territories, and tribal nations. Multiple resources were developed to support the CoP teams and other IDD organizations to use cultural and linguistic competence as key approaches to advance racial equity within systems of supports and services in states, territories, and tribal nations. Access the resources.  

National Indian Council on Aging: Understanding Disabilities in American Indian & Alaska Native Communities
NICOA has released a toolkit dedicated to increasing awareness and knowledge of the needs of American Indian and Alaska Native persons living with disabilities. The toolkit — “Understanding Disabilities in American Indian & Alaska Native Communities” — contains information about disabilities, tribes and resources. Read more and download the report

National Partnership for Women and Families: Raising the Bar for Maternal Health
The National Partnership, in collaboration with other key partners, has launched a website: Raising the Bar for Maternal Health Equity and Excellence. The site includes actionable strategies, resources and innovations, such as:

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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.