Finding good medical care for people with intellectual and developmental disabilities (I/DD) can be difficult to do — all the more so if they have Medicaid, given the waitlists for Medicaid doctors. Not surprisingly, this can have serious consequences.

Individuals with I/DD “experience significant health disparities, including increased rates of co-occurring mental and physical health conditions and decreased life expectancy,” according to a study that came out this past November.

Kerri Neifeld, commissioner of the Office for People with Developmental Disabilities (OPWDD), recently joined the NYS Dept. of Health’s “Grand Rounds” — which offer an opportunity for healthcare professionals to hear from subject matter experts — to discuss medical equity for people with I/DD.

You can check out the Dec. 15th, 2023, webinar, but I’ve also put many of its highlights here. While the webinar was targeted at professionals, I think family members and caregivers will find the information helpful; knowing the problems can help you find solutions.

Some Statistics

Neifeld cited some statistics from the Centers for Disease Control and Prevention (CDC):

• 1 in 4 people with disabilities aged 18 to 44 do not have a consistent health provider.
• 1 in 4 in the same group have unmet healthcare needs due to cost.
• 1 in 5 people with disabilities aged 18 to 64 did not have a routine health checkup in the last year and overall were twice as likely as people with disabilities to skip or delay medical care.
• In September 2023, the National Institute of Health designated people with disabilities as a “health disparity population.”

Hurdles to health equity

• Physical barriers such as inaccessible equipment.
• Education barriers: Most medical professionals don’t receive specific training related to disabilities as part of their standard medical training.
• Negative biases: Doctors may assume, for instance, that people with disabilities can’t speak for themselves or understand what’s going on.
• Some deny care because they’re not sure how to provide it.
• Poor prior experiences can keep people from seeking further care.

What to do (this was for doctors, but I’ve tweaked it a bit to help caregivers)

The most important suggestion is to communicate. Panelist and family physician Dr. Vince Siascoco suggested that if a patient can’t clarify their symptoms due to communication problems, a health provider should examine things such as behavioral changes and make sure they do a good medical workup. Make sure you suggest these avenues if you feel you’ve hit a dead end.

And of course, if your loved one is verbal, make sure the provider is giving them the space and time to discuss their issues. If a doctor is shoving you out the door, sit tight and ask them to listen.