As we head into a weekend of events celebrating the 25th anniversary of the signing of the Americans with Disabilities Act, the Administration on Intellectual and Developmental Disabilities (AIDD) is releasing a final rule (PDF) that will strengthen critical programs that promote the independence, inclusion, and civil rights of Americans with developmental disabilities and their families.
The rule provides additional guidance for implementing the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). It accounts for the many changes included in the 2000 DD Act reauthorization and addresses some of the most common barriers and road blocks DD Act programs face in seeking to translate Congress’ charge into programs that have a real impact. With these issues clarified, DD Act programs can devote less time and money to understanding and defending what the law allows them to do and devote more resources to supporting people with developmental disabilities and their families.
From smartphones and electronic medical records to new laws and attitudes, the world we live in has changed drastically since the last DD Act rule was released. And who knows what new changes the coming decades will bring?
In developing this rule, we paid close attention to the feedback we received from the DD network and the community it serves. For example, we have heard from University Centers of Excellence in Developmental Disabilities (UCEDDs) concerned that a lack of clarity in the requirements for how they are structured could lead to their funding and functions being split up, which would hurt their effectiveness. And Protection and Advocacy systems investigating suspected abuse and neglect have shared stories of being forced to wage costly court battles in order to access records, despite the clear mandate of authority included in the current DD Act.
Here are just a few of the notable provisions of the rule:
- The rule explains how and when a P&A should have access to service providers, individuals, and records (including electronic communication and records) when investigated cases of suspected abuse.
- It clarifies the DD Act's requirement that UCEDDs be single interdisciplinary units within their respective university systems.
- Recognizing that Demonstration Projects conducted by State Councils on Developmental Disabilities are intended “to demonstrate new approaches,” the rule sets limits on the duration of these projects while building in some flexibility and outlining when projects can exceed these limits.
- The final rule provides updated definitions for DD Act programs. For example, a flexible definition of “service provider” recognizes that how and where people with developmental disabilities receive services is constantly changing.
We look forward to working with all stakeholders to make sure that those affected by the final rule have the tools they need to ensure a smooth implementation. Over the coming weeks we will be hosting a series of webinars for grantees.
For the disability community, this is a weekend to celebrate hard-earned gains and examine the hard work that remains. Sunday, July 26, marks the 25th anniversary of a historic milestone, the signing of the ADA. The ADA provides, to quote the law itself, “a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities” and a recognition that “physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society.”
The DD Act and the ADA represent two tremendous pieces of legislation that have helped move this country forward. Because of the efforts of the disability rights movement, people living with disabilities lead very different lives than they did in 1963, when the DD Act was first signed into law. At that time, many people with developmental disabilities spent most of their lives in institutions where reports of systemic abuse and neglect were common.
Today, they have far more opportunities to live, learn, and work in the community of their choice. Because of the ADA, they have protection from discrimination on the basis of disability and a more accessible world that includes accessible buses, curb cuts, braille signs, and relay services. And because of the DD Act, they can receive a broad range of state-of-the-art educational and medical services from UCEDDs or participate in an employment or a self-advocacy leadership program funded by a DD Council. And if they do encounter discrimination or abuse, P&As are available in every state and territory to help.
There is still much work left to be done, but we are proud of all the DD Act network has accomplished to support and empower the nearly 5 million people living with developmental disabilities in this country and their families. With this rule, the DD Act network will be in an even stronger position to continue leading the way towards a brighter, and more inclusive, future.
View the full rule on the Federal Register website (PDF) and check out the DD Act Rule Toolkit for more on the rule and the DD Act network.