Legislative Updates from the 2nd Annual IDD Leadership Summit: 

Update on Policy Progress and Advocacy

The 2nd Annual IDD Leadership Summit was a profoundly inspiring event. Leading advocates and industry professionals shared countless strategies and insights to advance support for the IDD community and the participation of those in attendance was off the charts. 

There were many highlights of the Summit, and we look forward to unpacking all of them. One highlight we’re eager to recap here was the legislative update presented by Jonah C Cunningham, President and CEO of the National Association of County Behavioral Health and Developmental Disability Directors (NACBHDD). Cunningham’s session provided essential insights into the latest policies and legislative efforts impacting IDD services and supports. 

Here’s a summary of the must-read updates and future directions for IDD advocacy and policy.

Understanding the Federal Government’s Role in IDD Services

Cunningham opened his presentation by outlining the federal government's involvement in healthcare and IDD services. Its role falls into six key categories: research, funding, technical assistance, regulation, health surveillance and direct services. Each of these categories impacts how IDD services are delivered across the United States, affecting both the accessibility and quality of care.

For IDD providers, understanding these categories significantly impacts advocacy efforts. Cunningham pointed out that the more informed providers are, the more effective they can be in communicating the needs of their communities to policymakers.

Key Legislation Updates for 2024

One of the primary focuses of Cunningham’s presentation was on recent and pending legislation impacting the IDD care industry. He highlighted three critical bills that passed the House of Representatives and now await consideration in the Senate.

1. Autism CARES Act (HR 7213)

This bill reauthorizes funding for autism-focused programs, particularly for developmental disability surveillance and the Interagency Autism Coordinating Committee (IACC). The bill supports ongoing research, services and coordination for individuals on the autism spectrum.

2. Think Differently About Emergencies Act (HR 6249)

A timely piece of legislation, this act requires the Federal Emergency Management Agency (FEMA) to report on how it supports individuals with intellectual and developmental disabilities during natural disasters. FEMA would also be required to propose recommendations for improving these services, ensuring that emergency response systems are more inclusive and adaptive to the needs of people with disabilities.

3. Respite Care for Caregivers Act (HR 6160)

This bill reauthorizes funding for programs that offer respite care for caregivers of children and adults with special needs. The act addresses a critical need, recognizing that caregivers often face high levels of stress and need breaks to continue providing effective support.

While these bills passed in the House, Cunningham reiterated that each session of Congress lasts two years, and pending legislation must pass both chambers before the session concludes. If these bills do not move through the Senate by the end of the session, they will need to be reintroduced in the new Congress.

Executive Branch Update

Cunningham also shared updates from the executive branch, including proposed rules from federal agencies that influence IDD services. Among these is the proposed update to Section 504 of the Rehabilitation Act, marking its 50th anniversary. This update aims to reinforce protections for individuals with disabilities, ensuring they receive equitable access to healthcare and that facilities are fully accessible.

Another important regulatory update is from the Department of Housing and Urban Development (HUD), which recently issued guidance on mainstream housing vouchers. This guidance aims to streamline access to housing for individuals with IDD, promoting alternatives to institutional care. By enhancing access to mainstream housing, HUD is helping individuals with IDD live independently within their communities.

Lastly, Cunningham discussed a highly anticipated proposed rule by the Department of Labor (DOL) to end the practice of subminimum wage for individuals with disabilities. This rule, when enacted, would mark a significant step toward economic equity and independence for individuals with IDD, aligning with the broader movement for fair employment practices.

Preparing for the 119th Congress and Beyond

Looking ahead, Cunningham urged attendees to remain engaged and proactive as the 119th Congress convenes in January. Changes in congressional leadership and upcoming fiscal debates could impact legislation affecting IDD services. Cunningham described Congress as “a group project from hell” but stressed the importance of staying informed and engaged.

“The more that you know, the more of a resource you can be to your community, especially when you're interacting with policymakers,” Cunningham emphasized.

He recommended several resources to help IDD providers and advocates stay up to date on legislative matters, including Congress.gov for bill tracking, Regulations.gov for updates on regulatory changes and the Congressional Research Service (crsreports.congress.gov) for in-depth, nonpartisan reports on a range of issues relevant to IDD and healthcare.

Advocating for a Stronger Future in IDD Services

Cunningham’s detailed legislative update served as a reminder of the power of informed advocacy. By understanding current policies and tracking upcoming changes, IDD industry professionals can better serve their communities and advocate for the necessary resources and support systems. From legislative bills addressing caregiver respite and emergency preparedness to executive efforts aimed at housing and wage equity, each of these efforts represents a critical step forward for individuals with intellectual and developmental disabilities.