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NCI mourns the loss of Judy Heumann, who passed away over the weekend. Judy was a tireless advocate for disability rights and worked to break down barriers to ensure that people with disabilities have equal access and opportunities to live the lives they want to live. Judy was a founder of the independent living movement and played a critical role in the passage of the Rehabilitation Act, the Individuals with Disabilities Education Act, and the Americans with Disabilities Act.

HSRI President Emerita and NCI founder Val Bradley shares her memories of Judy Heumann.

I first became aware of Judy in 1975 when she came to California to be the Deputy Director of the Berkeley Center for Independent Living where she worked until 1982.  The Berkeley Center was the forerunner of the independent living movement.  I knew of the work of the Center since I had the good fortune of spending time with its founder, Ed Roberts, who became the Director of the California Department of Vocational Rehabilitation.  Both Judy and Ed were survivors of polio. 

The next time I was made aware of her was at the White House Conference on Handicapped Individuals Conference which opened on May 23, 1977.  HSRI was under contract with then HEW [Department of Health, Education and Welfare] to assist with the planning and logistics of the Conference.  Judy was a delegate, and I was able to see her in action and to witness the strength and breadth of her advocacy.  Months before the conference, HEW Secretary Joseph Califano had refused to sign off on regulations that would have provided enforcement of Section 504 of the Rehabilitation Act which prohibited discrimination against people with disabilities in any federally funded program.  Judy and colleagues demonstrated at HEW in Washington D.C. and she was an organizer of a sit-in at the San Francisco Office of HEW from April 5, 1977 to May 4, 1977 – the longest such sit-in in history.  Simultaneous sit-ins were happening at 9 other regional HEW offices.  Because of the relentless pressure by Judy and her colleagues, Califano signed the Education for All Handicapped Children’s Act and Section 504 regulations on April 28, 1977 – only days before the White House Conference.  There was an enormous sigh of relief by the Conference organizers. 

Judy took on many roles after that including at the Department of Education and the Department of State and as the co-founder of the World Institute on Disability.  I met her again when she because DC’s first Director of the Department of Disability Services.  We were working with the DD agency to do training and technical assistance with their ongoing federal litigation.  Judy was in her element and raised the profile of the Department as well as the cause of people with disabilities.

The last time I saw her was at the ASAN Gala a few years ago where she received an award for her lifetime of advocacy.  When she finished her speech, she came over to me to say hi and gave me her card.  I was touched to be remembered by such a giant in our field.  Good bye Judy, what an extraordinary legacy you leave behind.

Judy’s impact extended far beyond the borders of the United States. As the co-founder of the World Institute on Disability, she was a leading voice for disability rights on the global stage. She worked tirelessly to raise awareness of the challenges faced by people with disabilities around the world and to promote the inclusion of people with disabilities in all aspects of society.

Judy’s legacy will live on through the countless individuals whose lives she touched and the countless achievements she helped to make possible. Her courage, determination, and unwavering commitment to the cause of disability rights will continue to inspire future generations of advocates and activists.

Rest in peace, Judy Heumann. Your work and your spirit will never be forgotten.

• Created in 1999, National Quality Forum (NQF) is the only federally-recognized organization in the nation that evaluates and endorses healthcare measures or practices as the best, evidence-based approaches to improving care.
• NQF-Endorsed measures, which must meet rigorous criteria, are relied on by the federal government, states, and private-sector organizations to evaluate performance and share information with patients and their families.
• In early 2022, NQF officially endorsed 14 NCI-IDD measures, and the technical specifications can be found on the NQF website. Please note that the data referenced in the NQF endorsement was from survey year 2018-19.
• This all-new Report Chapter showcases the NQF-Endorsed measures using the latest available data (2020-21).

• Without the advantage of education and training beyond high school, the ability of people with IDD to escape poverty and find employment is diminished.

• Though the numbers of people who were enrolled in post-secondary education in the NCI IPS for 2020-2021 was very small, the availability of these opportunities is growing

• According to the results 2020-2021 In-Person Survey (IPS), only slightly more than 3.2% of respondents with intellectual and developmental disabilities (IDD) aged 18-25 were enrolled in a college or university.

• The benefits of vacation are abundant and well-documented, especially for those with IDD, whose social networks and opportunities are often more limited as a result of the enforced uniformity of their daily lives.

• Vacations add to our quality of life and expand our horizons.

• In 2021, while just 44% of the general population vacationed, only one in four people with IDD reported taking a break – a number that ranged by state from 6% to 39%.

This article provides historical context on the evolution of performance measures for system improvement, examines the perspectives and insights of state public managers on the use and utility of NQF-endorsed outcome measures from the NCI®-IDD In-Person Survey (IPS) for quality improvement, and discusses the necessity of ensuring that outcome measures align with public policy goals.

Baltimore MD. August 3-4, 2022

On August 2, NCI admirers, veterans and friends joined together at the National Aquarium to toast NCI’s 25 years of measuring DD system quality and performance.  It was a fun evening of laughs, memories and good food and drink. 

On August 3-4, 2022, NCI-IDD held the 2022 NCI-IDD Annual Meeting. About 60 people came together to talk all things NCI-IDD, such as sharing strategies for survey administration, discussing challenges, examining state data-dissemination resources, and understanding federal quality measurement initiatives. Everyone is energized for the upcoming survey cycle. 

On Thursday, July 21, CMS released a State Medicaid Director Letter providing guidance for the first-ever HCBS Quality Measure Set. This letter was the first of two planned guidance documents from CMS related to the measure set. 

As noted in the State Medicaid Director Letter, CMS provides states flexibility to select measures from the consumer survey of their choice from the following validated tools: HCBS CAHPS®, and POM®, and the National Core Indicators Surveys: NCI®-IDD, NCI-AD™.

The significant inclusion of NCI®-IDD & NCI-AD™ within this national measure set is a testament to the vision, dedication and leadership of state human service systems, NCI staff and staff at HSRI, NASDDDS, and ADvancing States. These entities have continued to emphasize the importance of a robust quality monitoring program that ensures that the experiences of people who access LTSS are at the forefront of quality improvement efforts. NCI partners have consistently expressed to our federal partners how NCI measures align with stakeholder and state priorities and expectations for quality and monitoring.

As CMS noted in this communication, quality measures will continue to be developed and enhanced. We are committed to further measure development and testing to ensure that NCI remains a valuable and valued tool that supports states in improving quality LTSS.

Check out the 2020-21 National NCI-IDD In-Person Survey and Family Survey User Friendly Reports. These reports, designed together with self-advocates, highlight topic-specific data in an accessible, easy-to-read format.

Webinar Recap: Institute on Community Integration (ICI) Policy Forum

• Low wages are a major factor contributing to the direct support workforce crisis. This webinar discusses the recent Policy Research Brief, which compared wages of direct support professionals (DSPs) to what people earn in other similar professions.

• It also puts them in context by comparing DSP wages to living wages—the cost of living based on typical expenses that meet minimum standards of living.

• ICI’s Julie Bershadsky moderated this forum. The discussants were Dorothy Hiersteiner from the NCI-IDD team at HSRI and Mary Lou Bourne from Management Support Solutions.

• The recording of the ICI Policy Forum held on April 6, 2022 and the slides are now available

In response to the national COVID-19 public health emergency, we are pleased to announce that data is now available from COVID-19 Supplements to all NCI-IDD surveys. The COVID-19 Supplements were optional for states, and were intended to support the understanding of the experience of people with intellectual and developmental disabilities (IDD), their families, provider agencies, and the DSP workforce at the beginning of the COVID-19 pandemic. Data were collected between July 1, 2020 and June 30, 2021. These survey findings reflect the far-reaching effects of the pandemic on IDD supports throughout our nation and inform states as they plan for the future.