Washington, DC Update 12/5/23

The first full week of December finds both the House and Senate busy at work to realize a number of priorities before the end of the year. On tap are a number of bills, such as supplemental funding foreign aid and border security, the Federal Aviation Administration (FAA), and the National Defense Authorization Act.

Tip for the F2F Education Campaign: Need to know what your member is doing, where they are, and good times to connect with them in the New Year? Look at the 2024 calendar for both the House and Senate.

SHVS: “Re-Enrollment” Data

We have all been closely tracking and monitoring the impacts of eligibility redeterminations during the unwinding of the Medicaid continuous coverage requirement. While there has been a strong focus on disenrollment data, recently, several states have also voluntarily begun reporting Medicaid reinstatement (also sometimes referred to as “re-enrollment” or “re-opening”) data. Medicaid and Children’s Health Insurance Program (CHIP) reinstatement data (especially when paired with enrollment data) allows states to tell a more complete story about what happens to individuals after they are disenrolled. This State Health and Value Strategies publication shares a table of “Re-enrollment” data.

CMS: Toolkit for Clinical Offices and Healthcare Settings

CMS recently released a toolkit for clinical offices and health care settings with patient-centered messaging regarding the unwinding of the Medicaid continuous enrollment requirement. The toolkit includes helpful information on how health care providers can share information on Medicaid and CHIP renewals.

• The toolkit starts with suggestions on what various staff members within the health care setting – from the front desk to clinicians to back-office administrators – can do to spread the word about Medicaid and CHIP renewals, the importance of returning renewal forms, and how to get help in renewing.
• It links to flyers, postcards, and fact sheets that can be used in waiting rooms and at check-in desks, as well as educational videos that can play on closed-circuit TVs in waiting rooms.
• The FAQs may particularly help clinicians and support staff answer questions patients may have. The toolkit includes phone/hold messages, no reply text messages and push notifications for patient portals and e-newsletters.

Related Resource

The American Academy of Pediatrics maintains a website with materials that pediatric practices can use to inform and assist families with the Unwinding.

CHIR Blog: Marketplace Navigator Guide FAQs

With the December 15 open enrollment deadline to sign up for the ACA marketplace fast approaching, this Georgetown Center in Health Insurance Reforms blog spotlights frequently asked questions (FAQs) from the Navigator Resource Guide about how to compare benefits and out-of-pocket costs across Marketplace plans, which might be helpful as F2F/FVAOs assist families who may have to seek coverage in the marketplace as a result of Medicaid disenrollment.

HHS and DOE: Inclusion of Children with Disabilities in Early Childhood Programs

The U.S. Department of Health and Human Services and U.S. Department of Education (the Departments) today announced the release of an updated joint-policy statement on supporting the inclusion of children with disabilities in early childhood programs.

The HHS-ED Policy Statement on the Inclusion of Children with Disabilities in Early Childhood Programs builds upon a statement originally released in 2015 and includes a renewed commitment and urgency, as children with disabilities continue to face barriers accessing and fully participating in inclusive early childhood programs. The statement was updated consistent with a directive to both agencies in President Biden’s Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers.

Over 61 million adults in the U.S. have a disability, and nearly one out of every six children are estimated to have a developmental delay. The Departments’ shared vision is to build a culture of inclusion for individuals with disabilities beginning at birth, continuing in early childhood programs and schools, and into communities and workplaces.

The statement reiterates expectations for inclusive early childhood settings and updates recommendations for state and local agencies that implement Individuals with Disabilities Education Act (IDEA) programs, Head Start, childcare, home visiting, preschool, and public schools to increase inclusive early learning opportunities for all children. Additionally, the statement includes evidence-based models and exemplars of inclusion and resources for programs and others to support high-quality individualized programming and inclusion of children with disabilities in early childhood programs.

To read the HHS-ED Policy Statement on the Inclusion of Children with Disabilities in Early Childhood Programs and to learn more, visit Policy Statement on Inclusion of Children with Disabilities in Early Childhood Programs | The Administration for Children and Families (hhs.gov).

HHS: Report to Congress Supportive Services for Individuals with Autism

The 2022 HHS Report to Congress on Supportive Services for Individuals with Autism, requested by the U.S. House of Representatives Committee on Appropriations in House Report 117-96, describes supportive services that, in addition to healthcare, may be beneficial for improving outcomes for autistic individuals and their families.

• This report provides an overview of existing coverage policies for supportive services under federal programs.
• The report also describes activities and programs related to supportive services conducted by multiple federal departments and agencies, including agencies and offices within the Department of Health and Human Services, as well as the Departments of Defense, Education, Housing and Urban Development, Justice, Labor, Transportation, and Veterans Affairs, and the Social Security Administration.
• The report highlights needs and opportunities for strengthening supportive services for individuals with autism. There are several critical areas of need, including long waitlists for services; the "services cliff" experienced after high school; workforce shortages; service delivery; services for older adults; as well as racial, ethnic, and geographic disparities in access to quality autism services and care.
• The report discusses how systems navigation tools and services can assist with the complexity of obtaining services and coverage. Also discussed is the need to establish and strengthen the evidence base demonstrating efficacy for some of the services that autistic individuals currently use and find helpful for addressing co-occurring physical and mental health conditions.

ACL: New Website for Health Care Transition

The Center for Transition to Adult Health Care for Youth with Disabilities, a national resource center funded by ACL’s Administration on Disabilities (AoD), has launched a new website to help young people with intellectual and developmental disabilities (I/DD) direct their own transition to the adult health care system.

Developed for and by youth with I/DD, the site has a variety of both person-centered and culturally competent tools and resources to help support youth, their families, and health care professionals through this important transition.

Resources on the website are designed to give youth more choice and control throughout their health care transition. Examples include helping youth gain an understanding of their legal rights and responsibilities in a health care setting and supporting them to lead appointments and at-home health care routines. The website’s data section shows that only 14% of youth with I/DD receive health care transition preparation and guidance from their doctor.

The Center for Transition to Adult Health Care for Youth with Disabilities was established through a five-year cooperative agreement awarded in September 2021, led by Family Voices. The project is funded under the Projects of National Significance within the Developmental Disabilities Assistance and Bill of Rights Act. 

CMS: Improving Collection of SDOH data

This infographic created by the Center for Medicare and Medicaid Services (CMS) explains how ICD-10-CM Z codes can help improve the collection of SDOH data. It also outlines ways that collection of SDOH data can improve equity in health care delivery and research. These blogs by the American Academy of Family Physicians give a bit more context and background on the role of these codes in practice: Screening for Social Determinants of Health in Daily Practice | AAFP and New "Z codes" and a tool to help physicians use them | AAFP.

CMS OMH: LEP and Access Challenges Infographic

The CMS Office of Minority Health created this infographic to highlight the challenges people with limited English proficiency (LEP) experience while getting care, including misdiagnosis, higher hospital admission rates, and difficulty getting regular screenings.

NAMD: Why Did They Do It That Way? In Brief

As we all know, Medicaid is a complex program with overlapping policy priorities and a long history of constant evolution. The National Association of Medicaid Directors (NAMD) has written several issue briefs that give a broad overview and then dive deeper into specific aspects of policy.

Why did they do it that way? Eligibility policy 

This issue brief, Why did they do it that way? Eligibility policy, explores the history of Medicaid eligibility policy, why states and territories make different choices around Medicaid eligibility, and how operational factors like state agency structures and data systems impact eligibility processes. 

Why did they do it that way? Understanding Medicaid policy making 

From the outside, it can be difficult to understand Medicaid policymaking. Why did one Medicaid program choose to cover doula services, while another did not? Why did one Medicaid agency use an 1115 waiver to cover substance use services, while another used a state plan amendment? And how do these choices impact the experiences of Medicaid members? Dive into Why did they do it that way? Understanding Medicaid policy making to learn more.  



NHeLP: Florida Home Healthcare Decision on Appeal

On July 14, 2023, the Southern District of Florida issued a significant decision in United States v. Florida, a case brought by the United States to address deficiencies in Florida’s provision of in-home private duty nursing (PDN) and other in-home services for children with medically complex conditions (MCCs). The case is now on appeal at the Eleventh Circuit to be heard the week of January 22, 2024.

This case explainer discusses the decision and pending appeal. NHeLP and the amici are pediatric experts and medical associations, a national philanthropic organization committed to advancing health equity, and family and disability advocates working for people with disabilities, including children with medically complex conditions. The brief focuses on literature concluding that the family home is the most appropriate setting for children and, with supports, families want their children at home. You can download the Amicus Brief.

Manatt and Commonwealth Fund: Leveraging Medicaid to Support Children and Youth Living with Complex Behavioral Health Needs

This new report offers a strategic framework for ways that state-level policymakers can use Medicaid and the Children’s Health Insurance Program (CHIP) to respond to the behavioral health crisis among children and youth living with complex needs. The framework and strategies center on a family- and community-based approach recognized as where children and youth do best, using interventions that build on their strengths and maximize their choices and autonomy. Appendix 1 includes strategies, state examples and mechanisms with Medicaid. Read the white paper, watch the webinar, and view the webinar PPT Slides. 

Respite Care: State Policy Resource Guide 

The National Academy for State Health Policy, in collaboration with ARCH and its Lifespan Respite Learning Collaborative on Implementing the National Strategy, produced a Respite Care Resource Guide with specific steps that states can use to support caregivers, including public awareness initiatives, efforts to engage family caregivers in services and supports, examples of state Lifespan Respite grant activities, such as voucher programs and volunteer and faith-based initiatives, and strategies to support the respite care workforce. It is available on SupportCaregiving.org.

Supporting Families: Formal HCBS Supports for Informal Family Caregivers of People with IDD

This study examines how states supported family caregivers using Medicaid HCBS. To do so, the author analyzed fiscal year (FY) 2021 Medicaid HCBS 1915(c) waivers and Appendix K waivers serving people with IDD.

ARCH: New Resources for Respite - Autism and IDD

The ARCH National Respite Network and Resource Center recently created resources designed to help families, local and state organizations, and providers expand and support respite options: Respite for Individuals with Autism and Nine Steps to Respite for Family Caregivers of Children and Adults with Intellectual and Developmental Disabilities (available in English and Spanish).

The ARC: 2023 FINDS Survey Results

The Family and Individual Needs for Disability Supports (FINDS) survey conducted by the ARC provides insights and understanding of the experiences of families supporting a family member with intellectual and developmental disabilities (IDD).

The 2023 report focused on:

1. What are the challenges families face in meeting the support needs of their family members?
2. What are the economic implications of caregiving?
3. How does caregiving affect caregivers, and what supports do they need? 

Of the more than 3,000 family and friend caregivers of persons with intellectual and developmental disabilities who were surveyed, a quarter (25%) reported that they needed more support than they were receiving. More than a third (37%) reported that they needed respite care but were not receiving it. Half of all participants (49%) said finding respite care was a major problem.

Generations United: Supporting Grandfamilies’ Mental Health and Wellness 

This 2023 State of Grandfamilies Report entitled Building Resilience outlines some of the reasons grandfamilies have mental health concerns, yet have more trouble accessing mental health services and supports for both children and themselves, such as lack of availability, lack of legal authority, and limited understanding of grand families’ needs among providers, cost, stigma, and ageism are some of the barriers. The report highlights that these limitations to accessing services have been exacerbated by Covid-19, racial violence, and opioid use. Recommendations can be found in the report as well, and in addition to improving access, the authors focus on the dire need to compile national and state data on the need for, and benefits of, and availability of respite care and support groups for grand families.  

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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.