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ASPE/BHDAP Announces $1.5 Million Investment in ID/DD Data Infrastructure

By Tisamarie Sherry, MD, PhD, Deputy Assistant Secretary; & Emma Plourde, BS, Public Health Analyst; Office of Behavioral Health, Disability, and Aging Policy; Office of the Assistant Secretary for Planning and Evaluation, HHS

As HHS commemorates the anniversary of the Americans with Disabilities Act (ADA), the Office of Behavioral Health, Disability, and Aging Policy (BHDAP) is working to advance data capacity to generate evidence to implement policies, programs, and practices that promote the full inclusion and participation of all individuals with disabilities in society. We are grateful to our colleagues at the Administration for Community Living, with whom we work closely to achieve these goals, for this opportunity to share with you a little more information about BHDAP and our work!

Housed within the Office of the Assistant Secretary for Planning and Evaluation (ASPE), BHDAP provides guidance to the Secretary of HHS on policy development and conducts policy research, evaluation, and economic analysis. BHDAP focuses on policies and programs that support the independence, productivity, health and well-being, and long-term care needs of people with disabilities, older adults, and people with mental health conditions and substance use disorders.

In the three decades since the ADA, we have witnessed much progress in meeting the needs of people with disabilities. For example, recent research<https://lnks.gd/l/eyJhbGciOiJIUzI1NiJ9.eyJidWxsZXRpbl9saW5rX2lkIjoxMDMsInVyaSI6ImJwMjpjbGljayIsImJ1bGxldGluX2lkIjoiMjAyMTA4MDIuNDQwMjU2NTEiLCJ1cmwiOiJodHRwczovL2FzcGUuaGhzLmdvdi9yZXBvcnRzL2hlYWx0aC1pbnN1cmFuY2UtY292ZXJhZ2UtYW1vbmctd29ya2luZy1hZ2UtYWR1bHRzLWRpc2FiaWxpdGllcy0yMDEwLTIwMTgifQ.sHNgpe422Jihogx-xttgHvonR2QBPQbfxDaGYVVuWJI/s/1527327974/br/110262979580-l> by BHDAP and ASPE's Office of Health Policy, found gains in insurance coverage among adults with disabilities since 2010. This same study, however, found that adults with disabilities are still less likely to have continuous insurance coverage than adults without disabilities, illustrating that more work must be done to fulfill the ADA's promise. (Read more in this TIME magazine article<https://lnks.gd/l/eyJhbGciOiJIUzI1NiJ9.eyJidWxsZXRpbl9saW5rX2lkIjoxMDQsInVyaSI6ImJwMjpjbGljayIsImJ1bGxldGluX2lkIjoiMjAyMTA4MDIuNDQwMjU2NTEiLCJ1cmwiOiJodHRwczovL3RpbWUuY29tLzYwODYzNTkvb2JhbWFjYXJlLWhlYWx0aC1pbnN1cmFuY2UtcGVvcGxlLWRpc2FiaWxpdGllcy8ifQ.AqigPxlbmeaClUERRYwxyvugKgdYw8MsDzrcRWsWzJ8/s/1527327974/br/110262979580-l>.)

As policies evolve to better support individuals with disabilities, it is imperative that related data infrastructure evolves as well. Robust disability data enables evaluation to ensure equitable and effective provision of services to individuals with disabilities in society.

In celebration of the ADA, BHDAP is excited to announce a new, $1.5 million interdepartmental pilot project, the Dataset on Intellectual and Developmental Disabilities<https://lnks.gd/l/eyJhbGciOiJIUzI1NiJ9.eyJidWxsZXRpbl9saW5rX2lkIjoxMDUsInVyaSI6ImJwMjpjbGljayIsImJ1bGxldGluX2lkIjoiMjAyMTA4MDIuNDQwMjU2NTEiLCJ1cmwiOiJodHRwczovL2FzcGUuaGhzLmdvdi9kYXRhc2V0LWludGVsbGVjdHVhbC1kZXZlbG9wbWVudGFsLWRpc2FiaWxpdGllcy1saW5raW5nLWRhdGEtZW5oYW5jZS1wZXJzb24tY2VudGVyZWQtb3V0Y29tZXMifQ.slSHxeLN94gG7dr35fMySp48K2F4oZZhVHgwf8y1oHw/s/1527327974/br/110262979580-l>. The project, funded through the Patient-Centered Outcomes Research Trust, will build data capacity for person-centered outcomes research for people with intellectual and developmental disabilities (ID/DD), through the creation of a publicly accessible, de-identified, linked dataset of ID/DD relevant state-level data. The linked dataset will enable researchers to generate evidence for policy makers, providers, and persons with ID/DD, to implement evidence-based person-centered programs and policies to promote the full participation of individuals with ID/DD across various life domains, including community inclusion and employment.

In addition, we recently released the final report, COVID-19 and People with Intellectual and Developmental Disabilities<https://lnks.gd/l/eyJhbGciOiJIUzI1NiJ9.eyJidWxsZXRpbl9saW5rX2lkIjoxMDYsInVyaSI6ImJwMjpjbGljayIsImJ1bGxldGluX2lkIjoiMjAyMTA4MDIuNDQwMjU2NTEiLCJ1cmwiOiJodHRwczovL3d3dy5hc3BlLmhocy5nb3Yvc2l0ZXMvZGVmYXVsdC9maWxlcy8yMDIxLTA3L0NPVklESURERlJfMC5wZGY_X2dhPTIuMjY5NzUyMjkuMTU3NzIxMDM1OS4xNjI3MzA4NTQ2LTE2MDk5MzYwNzcuMTU4MzkzNzYzNyJ9._3BjbRQYptRhbHAIRJ9u7wZUl4xwTCQKuzkx955J8pU/s/1527327974/br/110262979580-l>, and the issue brief, COVID-19 Data on Individuals with Intellectual and Developmental Disabilities<https://lnks.gd/l/eyJhbGciOiJIUzI1NiJ9.eyJidWxsZXRpbl9saW5rX2lkIjoxMDcsInVyaSI6ImJwMjpjbGljayIsImJ1bGxldGluX2lkIjoiMjAyMTA4MDIuNDQwMjU2NTEiLCJ1cmwiOiJodHRwczovL3d3dy5hc3BlLmhocy5nb3Yvc2l0ZXMvZGVmYXVsdC9maWxlcy8yMDIxLTA3L0NPVklESURESUJfMC5wZGY_X2dhPTIuMjM2OTcyNzQuMTU3NzIxMDM1OS4xNjI3MzA4NTQ2LTE2MDk5MzYwNzcuMTU4MzkzNzYzNyJ9.--Hj4ozf9M-HPc9682gJts2EnCMRbviHMYhgQ3qY9tI/s/1527327974/br/110262979580-l>. The reports examine state collection and reporting of COVID-19 data, COVID-19 infection prevention strategies, and COVID-19 vaccine prioritization for the ID/DD population to inform future efforts to reduce the risk of infection and adverse effects of infectious diseases on the population.

The ADA anniversary is an opportunity to reflect on advancements in policies, programs, and practices for people with disabilities, and an opportunity to identify future advancements needed to ensure meaningful inclusion and participation is realized by all Americans with disabilities. BHDAP remains committed to strengthening data, policies, and programs to not only meet the ideals of the ADA, but to optimize the health and well-being of all people with disabilities.

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