Realizing the Intent of the DD Act

Prepared for the Developmental Disabilities Network by
Robin E. Cooper, Director of Technical Assistance, NASDDDS, Inc.

Executive Summary

The Developmental Disabilities Assistance and Bill of Rights Act (DD Act, P.L. 106–402) established a set of programs to improve the lives of people with developmental disabilities through capacity building, systems change, advocacy, and the enforcement and protection of civil rights. These programs are the Developmental Disabilities Councils (DDC), the Protection and Advocacy (P&A) agencies (now known as the Disability Rights Centers), and the University Centers for Excellence in Developmental Disabilities (UCEDD); collectively, they are known as the "DD Network." Funds for the DD Network programs are administered by the Administration on Developmental Disabilities (ADD), a federal agency presently located in the Department of Health and Human Services, Administration on Children and Families.¹

The DD Network partners have been integral to the growth and development of service systems across the nation; they

• Provide resources to test out new service models.
• Conduct research and evaluation of outcomes and effectiveness.
• Conduct extensive interdisciplinary training on cutting edge service strategies and evidenced-based practices.
• Provide advocacy to project legal rights.

The efforts of the DD Network partners are essential in helping states' Medicaid agencies, developmental disabilities agencies, schools, and other providers to meet the mandates of the Americans with Disabilities Act, the Individuals with Disabilities Education Act, and the Olmstead decision through advocacy, research, and training that assures individuals with significant disabilities are served in the community, rather than in institutional settings.

The DD Network partners engage in critical functions that would otherwise result in critical gaps in the development of services systems for children, youth, and adults with disabilities. They fulfill a critical role in moving the entire field of intellectual and developmental disabilities forward through research, program development, education, and training that enhance the lives of individuals with developmental disabilities, their families, and communities.

State Medicaid and developmental disabilities systems do not have the capacity to try out new approaches or pilot programs, conduct research, train personnel and certainly cannot engage in the type of legal advocacy provided by the P&A arm of the DD Network. The DD Network partners provide essential resources that have had a profound effect on the lives of individuals with developmental disabilities. The collaborative efforts of the DD network partners have resulted in sustained changes in the landscape of supports and services to individuals with developmental disabilities. DD Network efforts have been and remain essential to the deinstitutionalization of individuals with developmental disabilities and the growth of home and community-based services and the improvement in the quality of lives of people with developmental disabilities and their families.

For the purposes of this report, examples of DD Network initiatives in just six states (Maine, Oregon, Pennsylvania, Tennessee, Washington, and Wisconsin) are cited to illustrate the broader array of programs and projects that the DD Network engages in around the country. These examples and topics are in no way exhaustive of the types of activities that the DD Network is engaged in across the states and territories. These examples merely provide a snapshot of the scope of DD Network initiatives on key state and national trends in the development of policies, supports, and services for individuals with developmental disabilities.

DD Councils have set the standard that assures the voices of consumers and families are always included as essential stakeholders in determining policy. The UCEDDs provide a laboratory for demonstrating emerging and promising positive practices such as working with schools and provider agencies on using positive behavioral supports or providing interdisciplinary training to professionals on cutting-edge approaches to serving children and adults with autism and other developmental disabilities. The P&A programs play a pivotal role in assuring that the civil rights of individuals with developmental disabilities are upheld through both advocacy and litigation.

In short, this report, using six states as examples, clearly illustrates how the DD Network partners, working with each other and in collaboration with state developmental disability agencies and others, have positively affected the lives of hundreds of thousands of individuals with intellectual and developmental disabilities — assuring their rightful place as full community members through advocacy, research, training, and programs that directly support individuals and families. The DD Network continues to move the entire field of intellectual and developmental disabilities to advance independence, productivity, and integration of people with developmental disabilities.