January 2025 Policy & Advocacy Updates

Policy Update – January 2025

From the Policy and Advocacy team at the Sibling Leadership Network, happiest of New Years to our devoted members and supporters. We are looking forward to another year of system’s change and advocacy alongside our siblings across the United States and beyond. A few updates from the lame duck session at the end of 2024 include the unanimous passage of the Autism CARES Act renewal. Meanwhile, we did not see the same passage for the Lifespan Respite Care Reauthorization Act (S. 4325), but efforts to expand support for family caregivers will continue. 

Over the next few weeks, we anticipate to see changes as a new congress and White House administration, led by President Donald Trump,  gets settled into their new legislative season. Here are a few considerations for advocates as we move through the beginning of 2025. 

  1. The 119th Congress has been sworn in as of January 3rd. Our team will be watching for the submission of bills aligned with our values and share those as they become available. For example, historically Sen. Durbin (Illinois) has submitted a bill to expand FMLA coverage to include siblings. This continues to be an important piece of our advocacy agenda, as we hear from siblings across the United States regularly that current policy does not work for their situation. 
  2. As we move into a new legislative season, it is important to recognize the power of state and local system’s change efforts. We are already seeing conflict in Congress, highlighting the importance of focusing on what we can control from a pragmatic perspective. State level change offers another approach to ensuring our community is able to access the resources we need to stand alongside our siblings as they navigate self-determined and interdependent lives. 
  3. The first 100 days of a new White House administration sets the tone for the upcoming four years. Experts anticipate President Trump to utilize executive orders to communicate his agenda, which differs from the legislative process and the passing of laws. Executive orders are directives for federal employees and are subject to judicial review for consistency with the law.

We look forward to continuing to serve our community and we continue to welcome your stories and input on what is important to siblings throughout the country and our partners. 

In the News: Healthcare Reform 

There has been a lot of recent discussion related to health insurance reform. Recent investigative reporting on health insurance practices has drawn light to problems with the ways in which insurance companies pay or deny claims, the appeals process to denials, the ways in which they pay clinicians, and other issues. There are groups such the Patient Advocate Foundation, who are able to help individuals with the intricacies of the health insurance system while advocating for reform on a larger scale. There have also been recent state-level efforts tackling reform. There is an emerging interest in health insurance reform and the SLN will continue to keep an eye on how things change and keep you informed.

What is happening with Medicaid? 

 

The 119th Congress, led by Speaker Johnson, has indicated that they intend to focus legislative efforts on one or two large budget reconciliation bills. A reconciliation bill is a special legislative process that allows spending cuts or changes to move quickly through the House and Senate. A reconciliation bill cannot be filibustered, which means that, instead of needing 60 votes in the Senate, it can pass with a simple majority. Learn more about budget reconciliation bills here


This is important for disability advocates because as Congress looks for ways to cut spending in this budget reconciliation bill, Medicaid is vulnerable to changes or cuts. Medicaid is a series of government funded programs that many people with disabilities use and many family caregivers rely on for support. While Speaker Johnson has said that the budget reconciliation bill would not include changes to Social Security or Medicare, Medicaid is a different program and documents from the House Budget Chair, Jodey Arrington, show that the House of Representatives is considering almost $2.3 trillion in reductions in Medicaid. Including Medicaid cuts or changes in a budget reconciliation means that some legislators who may not have otherwise voted for Medicaid changes will feel that they have to vote for the reconciliation bill anyway in order to get other spending priorities accomplished. 

Changes or cuts to Medicaid will have a big impact on the disability community including the sibling community. Siblings who feel that access to Medicaid should not be impacted in this budget reconciliation can connect with their federal legislators to share why Medicaid is important to their family. 



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