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Washington DC Update 10/20/21
Deadlines loom, negotiations continue. October 31st is the self-imposed deadline for the infrastructure and reconciliation bills. President Biden is very involved in discussions amongst Democrats in Washington this week as they try to work toward agreement. The difference in negotiations this week is the extent to which the President is involved and that there are attempts to put pen to paper and outline a bill. We still cannot predict exactly what will happen. Health issues are still very much in jeopardy of being drastically reduced or cut out.

NOW is the time to share your story, experience, and needs around home and community-based services (HCBS), paid family and medical leave, child tax credits, continuous eligibility and enrollment, making CHIP permanent, ACA Premium Tax Credit, prescription drug pricing, Medicaid coverage gap, maternal health, etc.! 
New Guardianship Legislation

Senator Casey (D-PA) and Senator Collins (R-ME) have introduced the Guardianship Accountability Act to protect people with disabilities and the elderly. It would also establish a National Resource Center on Guardianship, which would be tasked with:

  • Collecting and publishing information relevant to guardianship for use by guardians, individuals subject to guardianship, as well as courts, states, local governments, and community organizations;
  • Publishing model legislation and best practices developed pursuant to the Elder Abuse Prevention and Prosecution Act;
  • Compiling and publishing training materials for guardians;
  • Promoting the use of less restrictive alternatives such as supported decision-making;
  • Sharing research related to guardianship; and
  • Maintaining a database on state laws regarding guardianship, and the use of less restrictive alternatives, and the restoration of rights.

NOTE: A version of this bill has been introduced in the past. Senator Casey and colleagues are reportedly working on another bill that focuses on alternatives to guardianship.

New Mental Health in Schools Legislation

The bipartisan, bicameral Improving Mental Health and Wellness in Schools Act (H.R. 5526/S. 2930) led by Reps. Manning (D-NC), Hartzler (R-MO), and Sens. Klobuchar (D-MN) and Lummis (R-WY) was introduced in both chambers earlier this month. The bill proposes to update local school wellness policies to integrate education and resources for mental health promotion. Typically these programs focus only on nutrition education and physical activity; this bill works to bridge the gap between the mind and body for our nation’s schools.

Fact Sheet: Biden Administration Updated Plan on Operational Planning for COVID-19 Vaccine for 5-11 Year-olds

In anticipation of the FDA’s independent advisory committee meeting on October 26 and the CDC’s independent advisory committee meeting on November 2-3, the Biden Administration is announcing a plan to ensure that, if a vaccine is authorized for children ages 5-11, it is quickly distributed and made conveniently and equitably available to families across the country. The start of a vaccination program for children ages 5-11 will depend on the independent FDA and CDC process and timeline, but White House planning efforts mean that they will be ready to begin getting shots in arms in the days following a final CDC recommendation. In the fact sheet, the administration outlines several goals: secure vaccine supply, establish vaccine administration sites that children and families trust, and support education and engagement efforts to build public trust of the vaccine.
COVID-19 Boosters - who gets them?
Lots of discussion about who gets COVID-19 boosters right now. Use the CDC webpage as a source for clarification.
National State of Emergency in Children’s Mental Health
The AAP, American Academy of Child and Adolescent Psychiatry, and Children’s Hospital Association declared a state of national emergency in child and adolescent mental health. Find the press release here. They are calling for action from every level of government.
SSI Cost of Living Increases
In 2022, SSI will see a 5.9% increase for cost of living. Cost of Living Adjustment notices will be mailed through the end of December. Read more on this Social Security Administration blog.
State-Funded Affordable Coverage Options for Immigrants
This issue brief by State Health and Value Strategies—the first in a series “Supporting Health Equity and Affordable Health Coverage for Immigrant Populations”—provides an overview of the national immigrant health coverage landscape and offers considerations for policymakers related to state-funded affordable coverage programs for low-income individuals who do not qualify for subsidized health insurance under the ACA or other public programs due to immigration status. It features an overview, easy-to-use tables, and state-specific programs with links.
Following the trail of American Rescue Plan Act (ARPA) funding
Early Childhood

This Georgetown Center for Children and Families blog post provides an overview and outline of a new toolkit, Supporting Prenatal-To-Three with Federal Relief Funds, developed in collaboration with the Center for Law and Social Policy, Georgetown University Center for Children and Families, and Linchpin Strategies, that provides details on more than 30 funding streams from the ARPA that can be used to support early care and education, family support policies, and maternal and infant/toddler health.

Behavioral Health

States, taking advantage of federal flexibilities and new federal funding, are implementing policy changes that seek to increase availability of and equitable access to behavioral health services. States have submitted spending plans to the Center for Medicare and Medicaid Services (CMS) outlining how they intend to use these one-time funds to invest in home and community-based services (HCBS) that aim to keep individuals out of high-cost institutional settings. These proposals reveal priorities across states for investing in home and community-based behavioral health services. This great NASHP publication presents priorities in an organized and comprehensive manner; find out what your state and others have planned.
Opportunity for Input
Mental Health (2 opportunities--from Finance and HELP)

Senate Finance Committee Chairman Ron Wyden, D-Ore., and Finance Committee Ranking Member Mike Crapo, R-Idaho, are working together to develop bipartisan legislation to address barriers to mental health care as the COVID-19 pandemic has worsened alarming trends in Americans’ mental health. They are seeking input from stakeholders across the health care continuum to help better understand how Congress can address these challenges to be able to develop a bipartisan legislative package before the end of the year addressing many of the behavioral health care challenges currently faced by millions of Americans. Responses are due by November 1, 2021, and can be sent to mentalhealthcare@finance.senate.gov. Here is the full request letter.

Senators Chris Murphy (D-Conn.) and Bill Cassidy, M.D. (R-La.), members of the U.S. Senate Health, Education, Labor and Pensions (HELP) Committee, are requesting feedback from patients, families, health care providers, advocacy organizations, and state, local, tribal, and territorial governments on the effectiveness of the historic federal mental health and substance use disorder programs that were signed into law in 2016 as part of the senators’ historic mental health legislation. Read the full letter here, requesting input by November 5, 2021. Constituents, health care providers, and other stakeholders may leave feedback on their experience navigating the mental health or substance use disorder system using this form.

IACC Strategic Plan

The Interagency Autism Coordinating Council (IACC) is requesting public comments to inform the development of the 2021-2022 IACC Strategic Plan. The current IACC Strategic Plan that was issued in 2017 was developed through an extensive process engaging a wide range of stakeholders including federal agencies and the public. The IACC issued a progress update of the Strategic Plan in 2019. The IACC Strategic Plan chapters are organized around seven topic areas that are related to community-focused questions (provided below). The IACC is requesting comments on what you consider to be the most important issues, needs, and gaps in these seven topical areas that could be addressed by federal programs and activities, and/or in partnership with community organizations. Responses are due by November 30, 2021.
Webinars of Interest
Webinar: Federal Policy Priorities on Disability Employment: NDEAM 2021 and Beyond 
Wednesday, November 10, 2021 | 1:00pm ET

19 months into the COVID-19 pandemic and 10 months into the Biden Administration, it is worth taking time to reflect on how the employment landscape has been transformed for workers with disabilities. The federal government is actively working to capitalize on the accessibility gains made by remote work and striving to implement policies to promote the safety of workers in diverse sectors of the economy. This webinar will feature a host of VIP federal leaders reflecting on their work, their priorities and their hopes for the months ahead. As we celebrate National Disability Employment Awareness Month, we look to these leaders for their reflections on how to link greater inclusion, diversity and equity to the economic recovery of America. Date: Wednesday, November 10 Time: 1 p.m. ET / 12 p.m. CT / 11 a.m. MT / 10 a.m. PT.

Webinar: Briefing Celebrating National Disability Awareness Month
Thursday, October 28, 2021 | 1:00 - 2:30pm ET

CCD will host two panel discussions on innovative strategies and best practices to recruit and hire people with disabilities in competitive integrated employment. Join us to learn how one state (Washington) successfully transitioned to competitive integrated employment. Learn how state, provider, and local leaders collaborated to create a legislative movement to phase out 14c. Discussion will include ways that other states may create a road map for legislative changes, programmatic changes, and advocacy that can lead to a national change in the nature of work for individuals with disabilities.

The second panel will tackle three critical themes: changing attitudinal barriers that impact workforce access, tracking technological developments driving opportunities for remote workers with disabilities, and the predictions about the labor force consequences of "Long COVID." This panel will draw together diverse panelists who will leverage their lived disability and intersectional experiences to inform current policymaking efforts around stigmas, technology, and the future of work. Invited panelists include self-advocates and policy professionals from Easterseals, United Spinal Association, and RespectAbility. 

ASL and CART will be provided.

Webinar: Promoting Health Equity in Medicaid Managed Care
Monday, November 1, 2021 | 1:00 - 2:00pm ET

State Health and Value Strategies is hosting a webinar that will review steps states can take to integrate health equity into their Medicaid managed care programs. Medicaid’s role in providing healthcare coverage to individuals who experience economic and social disadvantage is leading many states to integrate health equity into their population health management strategies, focusing specific attention on reducing health disparities and addressing conditions that create health inequities. The webinar will profile the recently published Promoting Health Equity in Medicaid Managed Care: A Guide for States, a practical guide that offers a series of concrete actions state Medicaid agencies can implement internally and with their contracted health plans in pursuit of health equity.

Recorded Webinar: Working ABLE Account Owners

The National Resource Center for ABLE Accounts hosted a webinar on Working ABLE Account Owners for NDEAM on October 19th- the recording of this and other great webinars are available here. While on this site, check out their podcast series as well as other tools.
News of Interest
ACL announces Community-Based Direct Support Professionals Grand Prize winner

The Blazing New Trails for Community-Based Direct Support Professionals prize challenge was launched by ACL to seek innovative solutions that would strengthen the direct support professional (DSP) workforce and increase the overall stability of home-and community-based services (HCBS) for individuals with intellectual and developmental disabilities (ID/DD). After several phases of competition, ACL is announcing The Collaborative for Citizen Directed Supports – NJ as the grand prize winner! 

The Collaborative for Citizen Directed Supports – NJ is a membership organization that promotes and expands citizen-directed services and supports in New Jersey. They developed an interactive map that indicates where self-directed employees (SDEs) and Direct Support Professionals (DSPs) are located so that clients can contact them about their services.

The Collaborative for Citizen Directed Supports – NJ has built a network of over 700 people who can share and promote the map and DSP support solutions. DSP agencies can submit lists of their available staff to the map, and SDEs can submit information about their staffing preferences. With their small-scale testing, the Collaborative for Citizen Directed Supports – NJ demonstrated that through formalized partnerships, effective marketing, and professional training, it is possible to increase the size and improve the stability of the DSP workforce, while also improving the capabilities of the DSP workforce.  

ACL Awards Two Research Grants on Parenting with a Disability

ACL's National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) has awarded two new research grants to help inform how to best support parents with a disability. One is a new Disability and Rehabilitation Research Project (DRRP) Program grant to the Lurie Institute for Disability Policy at Brandeis University from September 1, 2021, to August 31, 2026, with an anticipated total award of $2.5 million. A second grant is a Field Initiated Project (FIP) to Through the Looking Glass (TLG) from September 1, 2021, to August 31, 2024, with an anticipated total award of $600,000.

The Brandeis University project is entitled “Parents Empowering Parents: National Research Center for Parents with Disabilities” (PEP Center). The Center is directed by a National Advisory Board of racially and ethnically diverse parents with disabilities living with a range of disabilities. The goal of the grant is to conduct research and provide training and technical assistance to improve the lives of parents with disabilities and their families, particularly racial and ethnic minority parents. Products of this grant will include a comprehensive, accessible online hub for parents with disabilities, with training, technical assistance, and dissemination materials in English and Spanish.

The Through the Looking Glass (TLG) project is entitled “Increasing Adaptive Babycare Resources and Intervention Supports with Parents and Caregivers with Physical or Vision Disabilities.” With this grant TLG will partner with key stakeholders to build on their previous NIDILRR-funded foundational research and development work to increase support for parents and caregivers with physical or vision disabilities. Contact Kirstin Painter at NIDILRR if you have questions about these projects.

On a related note: NIDILRR is hosting a series of webinars about disability and pregnancy. Find more information and register here.

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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.