On March 30^th, 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).

Read this announcement from Senator Casey.  Read a one-pager on the bill.

2022_Lobbying versus Educating.pdf (aucd.org)

You can find other helpful AUCD Policy “How To” materials here.

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.

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.

This blog by Georgetown CCF is helpful for understanding procedural dis-enrollments and why they happen.

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.

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.

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.

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.

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.

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 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.

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 2022, OMB 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.

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.  

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. 

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:

Not subscribed to the Washington, DC Update? SIGN UP HERE

Thank you for subscribing to the Washington, DC Update newsletter. Please feel free to contact the Family Voices Public Policy and Advocacy consultant, 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.