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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 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.)
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. 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, and the
issue brief, COVID-19 Data
on Individuals with Intellectual and Developmental Disabilities.
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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