Big Win for Advocacy Efforts!

ADVOCACY UPDATE - Advocacy leads to action!

We raised our voices and helped make a change! Thanks to advocacy efforts by the AADMD and beyond, hospitals and state agencies must now modify “no visitor” policies to accommodate patients with intellectual and developmental disabilities.

In an update on June 9th, the Center for Public Representation released a statement:

Today, in response to a complaint filed by CPR and partners challenging discriminatory hospital “no-visitor” policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic.

Read their full statement here.

In April, the AADMD released a policy statement addressing the potential detrimental outcomes of blanket “no visitor” policies for individuals with intellectual and developmental disabilities. We started a petition to gain public support for changing those policies. To date, the petition nears 47,000 signatures and is supported by 57 organizations. Over the past weeks, we’ve reported states and hospital systems amending their policies, considering them “small victories”.

We’re calling this one a huge victory - a federal response and clear statement that hospitals must ensure patients with disabilities have access to the caregivers and direct support professionals they need.

We encourage you to celebrate with us and consider this a step forward in addressing healthcare disparities for people with disabilities. While it can’t protect our vulnerable population from COVID-19, this resolution removes one obstacle to getting them the best possible treatment.

This resolution also sets a precedent. We hope that when the next global health crises or pandemic strikes - whenever that may be - it will be met with a more equitable healthcare approach for all.

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Why do we advocate?

To change policy and systems of care, it takes persistence, passion — and it takes time.

Recently our friends at Rush University Medical Center and Georgetown University Center for Excellence in Developmental Disabilities produced a documentary None of Us Want to Stand Still that reveals the reality of how poorly people with IDD are treated in the healthcare system - and what one university is doing to change that. Watch this video in our Advocacy section or click the link below.

WATCH NOW