Individuals & Families Resources

Navigating the service system for intellectual and developmental disabilities (I/DD) can be challenging for individuals and families. Understanding your rights, accessing appropriate supports, and connecting with advocacy networks are essential steps toward building a fulfilling and self-directed life.

Understanding Your Rights

All individuals receiving I/DD services have specific rights protected by law, including:

• Informed choice: The right to make decisions about your services and supports
• Privacy and dignity: Protection of personal information and respectful treatment
• Freedom from discrimination: Equal access to services regardless of disability
• Due process: Fair procedures when appealing decisions about services
• Self-determination: The right to direct your own life and services to the greatest extent possible

Understanding these rights is the foundation for effective self-advocacy and ensuring quality services. Individuals and families can request assistance from advocacy organizations to help navigate concerns or questions about rights.

Navigating the Service System

The I/DD service system often involves multiple agencies, funding streams, and eligibility requirements:

• Early intervention services: Supports for children from birth to age 3 with developmental concerns
• Educational services: Special education supports through public school systems
• Medicaid waiver programs: Home and community-based services for eligible individuals
• Vocational rehabilitation: Employment supports and job training services
• State I/DD agencies: Services coordinated through state developmental disabilities departments
• Independent living resources: Supports for community living and self-determination

Building Support Networks

Beyond formal services, connecting with advocacy and peer support networks can provide valuable information and emotional support:

• Self-advocacy organizations: Groups led by individuals with disabilities advocating for their rights
• Family support groups: Peer networks offering mutual support and shared experiences
• Disability-specific organizations: Resources focused on particular disabilities or conditions
• Protection and advocacy agencies: Organizations providing legal advocacy for disability rights
• Parent training centers: Federally funded resources offering information and training for families

These resources aim to empower individuals and families to navigate the complex service system, understand their rights, and connect with supportive communities that enhance quality of life and full participation in society.