Why We Are Needed

Why We Are Needed

Over a half-century ago, individuals with developmental disabilities such as autism, epilepsy, cerebral palsy, and intellectual disabilities had no right to an education or supports to live in the community. Instead, they were routinely locked up in institutions with deplorable conditions. But then parents joined together to fight for the rights of their children to be educated and live and work in the community. The willpower and dedication of these parents led to the passage of two historic laws, eventually called the Individuals with Disabilities Education Act (IDEA) and the Lanterman Act.

More than fifty years have gone by and individuals with developmental disabilities in California are now educated in their local public schools and provided services funded through local regional centers. But these systems have not achieved their ultimate goals. Outcomes for these individuals remain grim. Many lack a high school diploma, over 80% are unemployed, the vast majority live in poverty, many families are struggling financially, and many are victims of abuse. It is hard to say these programs are working well.

Over time, the parents who built the systems have been relegated to the sidelines, replaced by professionals and bureaucracy. In many cases, individuals with developmental disabilities and their families are no longer driving the decisions affecting their lives and are shepherded into one-size-fits-all programs and classrooms that don’t meet their needs. Surveys show that they are unsatisfied with the little choice and control over the services they receive. Consumers from Latino, African-American, and Asian families continue to receive far fewer services. Some parents and individuals feel fear and intimidation and therefore don’t complain. Many families and individuals have lost confidence in the systems that are supposed to help them.

The oversight and accountability that could improve the system is lacking or misdirected. Policymakers hear from advocates for the regional centers, school systems, and providers far more than from individuals and families. The voices representing the pure interests of individuals with developmental disabilities and their families don’t always get heard.

Recent developments have proved that, when organized, consumers and families can be heard. The 2013 unanimous passage of the Self-Determination Law shows that thousands of individuals and families will come together to fight for changes they believe in. It demonstrates that they want more control over the services they receive and the system that provides it. This law, and the lessons learned by its journey through the legislature, present a guide for families and consumers to take back the system they created.

Now, a half-century after they created them, families and individuals with developmental disabilities are joining together to establish a new organization – Disability Voices United -- to reclaim the developmental disabilities and education systems. Through grassroots education, organizing, and empowerment, monitoring of regional centers, legislative and administrative advocacy, and calls for increased oversight, Disability Voices United will advocate for systemic changes to the systems that ensure choice and control, meaningful outcomes, equality, and accountability.