Introduction

  1. Overview of Rising Expectations: The DD Act Revisited
  2. Purpose
  3. Methodology

The Developmental Disabilities Assistance and Bill of Rights Act (DD Act, P.L. 106-402), signed into law in 1963 and reauthorized most recently in 2000, is the nation's policy and civil rights framework for more than 4.7 million Americans with intellectual and developmental disabilities (ID/DD). When the law was passed in 1963, Congress established a set of principles and programs focused on improving the lives of people with ID/DD; protecting their civil and human rights; and promoting their maximum potential through increased independence, productivity, and integration into the community. Today, these goals must be revitalized and translated into a coordinated federal strategy focused on supporting citizens with ID/DD in achieving optimal self-sufficiency, economic advancement, and full participation in the community.

Overview of Rising Expectations: The DD Act Revisited

In 2011, NCD released a report entitled Rising Expectations: The Developmental Disabilities Act Revisited [1] (hereinafter Rising Expectations), which summarized the accomplishments and challenges of the DD system since the passage of the DD Act in 1963. In its synopsis, the report described the development of the DD system, which has evolved from a purely medical model to a multifaceted social model involving an interdisciplinary approach to identifying needs and delivering supports and services in the community. Despite some gains in disability rights, people with ID/DD continue to face considerable barriers to full integration, maximum independence, and self-determination. Major programs funded by the Federal Government that affect the lives of people with ID/DD have been in place since the inception of the DD Act. Most significantly, the growth of the Medicaid program has shifted the system of supports for people with DD from one that is funded predominantly by state funds to one that is funded predominantly by Medicaid—with joint federal and state funding. Currently, no federal policymaking or funding stream is focused on building effective community-based alternatives to Medicaid-funded supports for people with ID/DD. Although the original intent of Congress was that the Administration on Developmental Disabilities (ADD) would span agencies that manage the key domains in the lives of people with developmental disabilities, today the power to affect DD programs is concentrated in the Centers for Medicare and Medicaid Services (CMS). Thus, policy related to citizens with ID/DD lacks coordination across federal departments and agencies.

Rising Expectations addressed three basic questions:

  • What has the DD Act accomplished in the past 40 years?
  • What are the strengths and weaknesses of the current structure?
  • Is the existing structure suited to address the current and future social and policy environment?

This supplement builds on the original NCD report to explore opportunities for expanding the infrastructure to fully realize the underlying goals of the DD Act and to establish a comprehensive policy framework of clear, consistent objectives across federal agencies and within other major legislative statutes.

As Rising Expectations described, the nation's expectations, attitudes, policies, and services for people with disabilities have changed dramatically since the DD Act was passed in 1963, and they continue to evolve. Today, our society generally has greater faith in the competencies of citizens with ID/DD, and these citizens and their families have higher expectations about the types of lives they will lead. Graduating from high school, obtaining integrated employment at livable wages, developing meaningful social relationships and natural supports, and living independently in the community are common goals of citizens with ID/DD. Public policy and publicly financed supports must be realigned to more closely mirror the desires and expectations of citizens with ID/DD to contribute and participate fully in society.

Unfortunately, the majority of publicly financed support systems have not kept pace with evidence-based practices or the evolving, enhanced expectations of citizens with ID/DD and their families. Citizens with ID/DD continue to face barriers to accessing health care, housing, employment, and community supports focused on ensuring their full participation in society. Significant public policy issues remain, including inadequate supports for the transition from youth to adulthood, a disconnect between employment and income/asset limits, and a lack of coordination among key systems driving outcomes for citizens with ID/DD.

Purpose

The Developmental Disabilities Assistance and Bill of Rights Act was established under the premise that "Individuals with developmental disabilities, including those with the most severe developmental disabilities, are capable of achieving independence, productivity, integration, and inclusion into the community, and often require the provision of services, supports, and other assistance to achieve such."[2] The legislation was crafted to establish an infrastructure that would improve access and responsiveness to the needs of people with developmental disabilities and their families, and to ensure that federal policy and programs presumed the highest level of expectations, competency, inclusion, and engagement of citizens with ID/DD.

This supplement expands on the challenges identified in Rising Expectations by offering specific recommendations for aligning systems and landmark statutes both within and outside the scope of the DD Act. The supplement examines specific regulatory and legislative strategies that could be deployed to ensure a solid, unified federal policy aimed at fully realizing the intent of the DD Act: to give people with ID/DD the information, skills, opportunities, and support to—

  • make informed choices and decisions about their lives;
  • live in homes and communities in which they can exercise their full rights and responsibilities as citizens;
  • pursue meaningful and productive lives;
  • contribute to their families, their communities, their states, and the nation;
  • have interdependent friendships and relationships with others;
  • live free of abuse, neglect, financial or sexual exploitation, and violations of their legal and human rights; and
  • achieve full integration and inclusion in society as individuals, consistent with their unique strengths, resources, priorities, concerns, abilities, and capabilities.

This report is organized into three parts. Section 1 lays out a framework for addressing the structural challenges of achieving strong cross-system coordination of policies, programs, and services within the existing state and federal ID/DD infrastructure. Section 2 explores policy options to coordinate various federal systems vital to the provision of programs, supports, and services aimed at improving outcomes for people with ID/DD across the lifespan, aligned with the underlying principles of the DD Act. Section 3 is the conclusion.

Methodology

The recommendations outlined in this supplement are based on findings from the following research and intelligence-gathering activities:

  • a comprehensive literature review analyzing trends, developments, challenges, and achievements of the DD Act since its last reauthorization in 2000;
  • 25 interviews with individual stakeholders—self-advocates, family advocates, researchers, practitioners, and state and federal government officials; and
  • five independent focus groups composed of 6–10 participants representing 15 states.

The supplement also provides an overview of relevant legislative proposals before the 112th Congress and an analysis of several existing and new federal program initiatives linked to the emergence of the DD Act and its fundamental goals.

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