IEC’S Take On: Disability, health equity, and the NIH

Background: IEC has been getting a lot of questions about the actions taken by the National Institute on Minority Health and Health Disparities (NIMHD) Advisory Committee in September.

The committee initially made the controversial decision not to designate people with disabilities as a “health disparity population” — and then reversed this decision a few weeks later.

Here are Lauren’s thoughts on the NIH controversy.

Question: What was the committee’s original decision and why was this bad for people with IDD?

Lauren: The NIMHD Advisory Committee initially recommended not to designate people with disabilities as a health disparity population. This designation would create additional funding opportunities to support improving health of people with disabilities, and expand research funding to further study disparities in the disability community.

It is well known that people with IDD experience poorer access to care, poorer overall health, and higher rates of obesity, chronic illnesses, mental illness and suicide, preventable accidents, maternal mortality, and COVID death than the general population, so the decision really didn’t make sense.

Question: Were you surprised by the original decision, especially given the generally disability-friendly stance of the Biden administration?

Lauren: IEC was very surprised by the original decision; the Biden Administration has taken enormous strides to support the disability community.

Most recently, not even a week before the original NIMHD decision was announced, HHS released regulations updating the Rehabilitation Act reinstating non-discrimination requirements for healthcare facilities to support people with disabilities and the NIH proposed updating its mission statement to be less ableist.

The original decision by the NIMHD committee was incredibly out of step with these other actions.

Question: You and other IEC staff listen closely to disability self-advocates – it’s fundamental to IEC’s work. What are you are hearing now that the decision has been reversed and what do they, and IEC want to see happen next?

Lauren: We heard a lot of pushback and frustration. IEC received a lot of questions from our self-advocate partners and other disability organizations and we worked with them to communicate with administration officials about the negative impact of the initial decision.

We were thrilled when the NIMHD committee reversed their decision a few weeks ago and designated people with disabilities as a health disparity population.

Going forward, we hope to see continued attention to improving the quality of data on people with disabilities, especially data to identify them in claims data and EMRs. This is a problem that IEC believes is entirely solvable, and we’re trying to address it with our Making IDD Visible initiative.