Congress is back in session this week after a brief break for the Independence Day holiday. Many proposals are floating around, such as the American Jobs Plan, the American Family Plan, and the Republican Road Map, to help the country recover. What will actually become law and how it will come to fruition depends on a variety of factors, including legislative process and priorities. 

Process: Not all of the proposals have bipartisan support. Although the House and Senate both have Democratic Majorities, the Senate is 10 members short of the 60 needed to pass any of the proposals with only Democratic votes. Therefore, President Biden, House and Senate Democrats and Republicans have been meeting and negotiating the proposals on which they agree. Announcements were made the week of June 21st about a deal on a bipartisan framework for an infrastructure package. Highlights of this framework include significant investment in broadband, public transit, clean drinking water, electric vehicles, and repairing and rebuilding roads and bridges.

Notably, the “caregiving infrastructure” (HCBS) is not within this framework. Instead, the Better Care Better Jobs Act continues to move in a budget reconciliation process. This legislative tool only needs a simple majority (51) in the Senate but must be tied to spending.

How can you roll up your sleeves to help? Contact your members of Congress and educate them as to how important investment in caregiving infrastructure is for you, your family, the F2Fs, and people of all ages with extra health care needs and disabilities. Share your experiences; teach them what HCBS means for children and families!

The Credit for Caring Act (S.1670, H.R. 3321) would create a new, non-refundable federal tax credit of up to $5,000 for eligible working family caregivers to help address the financial challenges of caregiving. Eligible working family caregivers caring for loved ones of all ages could receive the credit if the care recipient meets certain functional or cognitive limitations or other requirements. This tax credit would help family caregivers who care for non-dependents or who do not live with the person they are assisting.

How can you roll up your sleeves to help? The Credit for Caring Act has been introduced in the past but has yet to be passed. While you are educating your members of Congress about the role that HCBS plays in your lives, take time to also educate them about how much unpaid caregiving you provide each and every year on which the system relies.

Introduced in the House on May 11, 2021, the bill has since gained additional co-sponsors. The Accelerating Kids Access to Care Act is bipartisan legislation that eliminates administrative burdens that get in the way of accessing out-of-state care for children with special health care needs by creating a limited streamlined Federal Medicaid enrollment and screening process. The following link will allow you to access the summary of the bill, the text of the bill, the actions taken thus far, and also identify whether your member of Congress is a co-sponsor. Simply click through the tabs in the middle of the page to access details and track progress.

Boston Children’s Hospital hosted a Community Briefing: Accelerating Kids' Access to Care Act on July 8, 2021.

The Centers for Medicare & Medicaid Services (CMS) is proposing actions that aim to close health equity gaps by providing Medicare patients battling End Stage Renal Disease (ESRD) with greater access to care, through the ESRD Prospective Payment System (PPS) annual rulemaking. This proposed rule would update ESRD PPS payment rates, make changes to the ESRD Quality Incentive Program (QIP), and modify the ESRD Treatment Choices (ETC) Model. The proposed changes to the ETC Model policies would aim to encourage dialysis providers to decrease disparities in rates of home dialysis and kidney transplants among ESRD patients with lower socioeconomic status, making the model the agency’s first CMS Innovation Center model to directly address health equity. See fact sheet.

The U.S. Department of Education has released more than $3 billion in American Rescue Plan Act (ARPA) funds to support Individuals with Disabilities Education Act (IDEA) grant programs. Of the $130 billion that was allocated to the Department, the following amounts were earmarked for IDEA grant awards as supplemental FFY 2021 funds:

           IDEA Part B, 611 $2.5 billion

           IDEA Part C $250 million

The 2021 Child Tax Credit (CTC) expansion provides a historic opportunity to reduce child poverty in the United States by more than 40 percent. Your efforts to help people get advance CTC payments are essential. Many people will need help to understand their eligibility and to use the IRS Non-filer Portal.

The following training, co-hosted by Code for America, will help you become a CTC navigator for your community. They will share:

As you may know, Supplemental Security Income (SSI) is a modest but vital source of income for people with disabilities of all ages who are struggling to make ends meet. Members of the Consortium of Citizens with Disability are thinking deeply about how to bring more voices and groups to the table in efforts to improve access to SSI.

Consider completing the Community Input Survey: Equity and Inclusion in SSI Program on behalf of your organization and also sharing widely with families and professionals alike.

As part of the American Rescue Plan Act, the Centers for Medicare & Medicaid Services (CMS) is again lowering the cost of health insurance and opening more pathways for Americans to obtain affordable and comprehensive health coverage. Starting July 1, 2021, consumers who received or are approved to receive unemployment compensation for any week beginning in 2021 may be able to find even lower cost plans and save extra money on out-of-pocket expenses through www.healthcare.gov.

Additionally, as a result of the Biden-Harris Administration’s Special Enrollment Period for the COVID-19 Public Health Emergency, consumers can continue to apply for coverage, compare plan offerings, or learn if they qualify for more affordable premiums by visiting www.healthcare.gov or www.CuidadoDeSalud.gov through August 15, 2021.

COVID-19 Policy Flexibilities Affecting Children and Youth with Special Health Care Needs: What to Keep, Modify, or Discard? Prepared by Health Management Associates and funded by the Lucile Packard Foundation for Children’s Health.

Through a series of executive working groups titled Medicaid Forward, NAMD and its partners are identifying concrete, actionable ways that state Medicaid administrators can and are creating a healthier, stronger American future. Workgroups are focused on mental/behavioral health, children’s health, and long-term services and supports. See summaries and reports.

Community Health Workers Advancing Child Health Equity focuses on the community health workforce as a community-led, anti-racist solution in health care delivery for children. This brief explores the power of a community health workforce in advancing child health equity and dismantling systemic racism.

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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.