Foundational Policies related to UCEDDs and LENDs
University Centers for Excellence in Developmental Disabilities (UCEDD) are funded by the Developmental Disabilities Assistance and Bill of Rights Act otherwise known as the DD Act. The DD Act is the fundamental law supporting and enhancing the lives of people with developmental disabilities and their families. For over 30 years, the DD Act has enjoyed strong bipartisan support. It was last authorized in 2000 and is therefore long overdue for reauthorization. Title I of the DD Act focuses on the estimated 5.4 million children and adults in the United States and territories who have developmental disabilities. The Act provides federal financial assistance to states and public and nonprofit agencies to support community-based delivery of services to create and enhance opportunities for independence, productivity, and self- determination. The DD Act consists of four programs that create an intersecting network. Grant funds support initiatives related to civil rights protections, education and early intervention, child care, health, employment, housing, transportation, recreation, family support, and other services.
- Action Step: Educating members of Congress about the work of the UCEDD you are connected to supports annual appropriations (money from the federal budget) and helps to ensure that members will be champions for future reauthorization of the DD Act.
Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs are interdisciplinary training programs which are fully funded by the Department of Health and Human Services' Maternal Child Health Bureau under the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act. Since it was first enacted in 2006, the law has helped to expand research and coordination at the National Institutes of Health (NIH), increase public awareness and surveillance at the Centers for Disease Control and Prevention (CDC), and expand interdisciplinary health professional training to identify and support children and youth with Autism Spectrum Disorders (ASD) and their families through the Health Resources and Services Administration (HRSA).
- Action Step: Sharing how valuable your experience as a LEND trainee has been with members of Congress supports them in understanding the impact of the funding in your community. Reauthorization of the Autism CARES Act is critical to the future existence of LEND training programs.