National Council on Disability Recommends Improving Federal Data Describing the Status of Americans with Disabilities

March 21, 2008

WASHINGTON—The National Council on Disability (NCD) today released Keeping Track: National Disability Status and Program Performance Indicators (/newsroom/publications/2008/Indicators_Report.html), calling on the Federal Government to do more now to improve federal data describing the status of Americans with disabilities.

This report is the result of a year-long effort. It describes what is known about the status of people with disabilities in the United States, and examines current data to assess the extent to which they meaningfully measure the well-being of people with disabilities.

According to NCD Chairperson John R. Vaughn, “There is much we do not know about the lives of people with disabilities. Currently, the statistics informing the policy debate are predominantly economic, such as employment and household income. Such statistics are helpful, but paint only part of the picture. Other quality of life dimensions are substantially overlooked. Although some surveys cover topics that are related to some aspects of well-being, such as income, assets, or health insurance status, they do not necessarily reflect other aspects of well-being as they would be defined by the target population.”

“During the past 30 years, advocates, policymakers, and a variety of public and private organizations have undertaken significant efforts to improve the lives of people with disabilities, culminating in the passage or improvement of legislation such as the Americans with Disabilities Act (ADA), various sections of the Rehabilitation Act, the Individuals with Disabilities Education Act, the Ticket to Work and Work Incentives Improvement Act, and others. Notwithstanding these various policies, little effort and progress has been made to measure and reflect upon the overall effectiveness and performance of these laws and policies, and their impacts on the quality of life for people with disabilities,” Vaughn concluded.

NCD’s previous 2004 research also reported that the incidence of disability is rising in the under Age 65 population. And, while it has decreased slightly for seniors, it will begin to rise sharply as the current senior population of 34 million doubles over the next 20 years.

In 2005, the Government Accountability Office (GAO) conducted a review of 200 federal programs that served people with disabilities located in 20 agencies. It identified the need to transform many of the programs it reviewed to keep pace with the changing expectations and challenges of the 21st century. In addition, most participants at a 2007 GAO forum on modernizing disability programs agreed that multiple indicators were needed to measure the success of disability programs and that these measures should include not only economic measures such as income and employment, but quality of life measures as well.

Keeping Track: National Disability Status and Program Performance Indicators includes a set of statistical social indicators that NCD believes are currently able to measure the progress of people with disabilities in important areas of their life, over time. The report includes 18 indicators determined by stakeholders to measure “quality of life” using both objective and subjective measures. The indicators span a variety of life domains, including employment, education, health status and health care, financial status and security, leisure and recreation, personal relationships, and crime and safety. Collectively they will create a holistic representation of the lives of people with disabilities.

Consequently, NCD recommends the following:

Recommendation 1: The National Institute on Disability and Rehabilitation Research (NIDRR) establish and fund a coalition of disability policy makers and advocates to: 1) develop a more robust set of indicators that are important to people with disabilities, building on the indicators outlined in this report; and 2) ensure that disability is included as a demographic subgroup as the Key National Indicators Initiative is developed.

Recommendation 2: Promote a standard set of disability questions.  

Recommendation 3: Fully disseminate disability data.

Recommendation 4: Administrative records of all means-tested programs should include a disability indicator.

Recommendation 5: Expand the Job Training Common Indicators.

NCD is an independent federal agency and is composed of 15 members appointed by the President, by and with the advice and consent of the Senate. We provide advice to the President, Congress, and executive branch agencies to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.