Policy & Advocacy Resources

Policy and advocacy work is essential to creating sustainable, equitable systems of support for individuals with intellectual and developmental disabilities (I/DD). Effective advocacy requires understanding the policy landscape, building strategic coalitions, and amplifying diverse voices in decision-making processes.

Understanding the Policy Landscape

The I/DD service system is shaped by policies at multiple levels:

• Federal legislation: Laws like the Americans with Disabilities Act, Medicaid HCBS authorities, and the DD Assistance Act
• Federal regulations: Implementation rules from agencies like CMS, ACL, and the Department of Education
• State legislation: State laws establishing funding, programs, and rights protections
• State regulations: Administrative rules governing service provision and provider requirements
• Local policies: County and municipal decisions affecting community inclusion and accessibility

Staying informed about policy developments across these levels helps advocates identify opportunities for systems improvement and respond effectively to potential challenges.

Effective Advocacy Strategies

Research on successful advocacy in disability policy highlights several key approaches:

• Diverse coalitions: Building partnerships across stakeholder groups including individuals, families, providers, and allies
• Data-informed messaging: Using research and outcome data to strengthen advocacy positions
• Personal stories: Connecting policy issues to real-life experiences of individuals and families
• Sustained engagement: Maintaining consistent participation in policy processes beyond crisis response
• Media strategies: Leveraging traditional and social media to amplify advocacy messages

Current Policy Priorities

Several policy areas are currently significant to advancing I/DD services and supports:

• Workforce development: Addressing the direct support workforce crisis through compensation and career development
• Community living: Expanding access to integrated housing options and community-based supports
• Employment: Advancing competitive, integrated employment opportunities and ending sub-minimum wage
• Self-direction: Expanding options for individuals to control their services and supports
• Healthcare access: Addressing disparities in health services and outcomes for people with I/DD
• Technology: Ensuring access to assistive technology and remote support options

These resources aim to support informed advocacy by individuals, families, providers, and allies working to improve the quality, availability, and inclusiveness of I/DD services and supports.