DD Councils and P&As: Trailblazers for Inclusion

October 30, 2020
By Sara Newell-Perez, ACL Lead, DD Council Programs, and Ophelia McLain, ACL Lead, Protection and Advocacy Programs

This month we celebrate two milestones for people with developmental disabilities, their families, and the country: 50 years of State Councils on Developmental Disabilities and 45 years of Protection and Advocacy (P&A) systems. As two parts of the trio of programs that make up the Developmental Disabilities Act network on the ground in every state and territory, these programs have worked alongside individuals with intellectual and developmental disabilities (ID/DD) and their families to increase opportunities for community living. Both milestones offer us the chance to collectively reflect on, and celebrate, how much a group of dedicated self-advocates, family members, and professionals working together can achieve. 

A half century ago, the lives of individuals with ID/DD looked quite different. Many had few, if any, opportunities to live, work, learn, and ultimately, thrive in the community. People with ID/DD and their families were rarely at the table when decisions were being made about policies and systems that impacted their lives. The work of Councils and P&As have transformed our communities and our country. This has resulted in empowered individuals with ID/DD who are advocates for themselves and are a voice of influence creating long-term solutions for others.

Since their creation 50 years ago tomorrow, Councils have harnessed the strength of their communities and their connections to individuals with ID/DD, families, providers, and state agencies to expand the skills, resources, and access of people with ID/DD and their families. Today, we have seen how this advocacy has translated into improvements across the life span in a host of areas - from education, to healthcare, employment, transportation, housing, and community supports. Over time, we have seen how supporting innovation, educating policymakers, and building the leadership capacity of individuals with ID/DD can drive needed change.

In 1975, P&As were added to the Developmental Disabilities Assistance and Bill of Rights Act as a result of growing public awareness of the appalling conditions faced by many people with ID/DD living in institutions. P&As have served as both a shield against abuse and neglect and an advocate for rights. Over the years, they have offered individuals with ID/DD a critical legal advocacy resource to assist them when they are facing discrimination or are experiencing abuse or neglect. Over the past 45 years, P&As have been involved in a significant number of landmark cases and today they work to implement the U.S. Supreme Court’s 1999 decision in Olmstead v. L.C. Their monitoring work remains crucial to ensuring people with ID/DD live free of abuse and neglect.

Together, the Councils and P&As, along with the University Centers for Excellence in Developmental Disabilities, have served as strong advocates for individuals with ID/DD. We have been reminded of the endurance and flexibility of our programs during the COVID-19 pandemic. Both the Councils and P&As have found innovative ways to continue serving the community while identifying, and working to address, the most pressing needs faced by people with ID/DD and their families and maintaining their visibility on the local, state, and Federal levels. They have played critical roles in ensuring people with ID/DD have equal access to COVID-19 testing and treatment, personal protective equipment, and their systems of support – especially while in a hospital setting. They have disseminated information and resources in plain language to people with ID/DD and their families and have helped them navigate waiver flexibilities for Medicaid home and community-based service in their states to address service gaps.

As we look to the future, we look forward to these networks continuing to lead the way and move the needle toward greater inclusion of people with ID/DD and their families in all aspects of community life.

As we reflect on these milestones, we remind ourselves of the words of the DD Act:

Disability is a natural part of the human experience that does not diminish the rights of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States Society.

At the federal level, we continue to raise expectations and heighten goals for full community living. Yes, these systemic transformations take time, but we move forward together and we consider ourselves fortunate to be on this journey with the DD Councils, P&As, and individuals with ID/DD and their families to make a difference in communities across America.