ADVOCACY UPDATE – Our voices are being heard!
During an AADMD Virtual Grand Rounds webinar on advocacy last month, Dr. Rick Rader compared advocacy not to a Calvary charge, but to guerrilla warfare. There are often no widespread defeats, but small victories that get us closer to our goals. Those small victories are what we are celebrating now, as we see an increase in states and hospital systems making policy changes to address the issues our petitions have raised.
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa
Petition support continues to grow, which is a victory in and of itself. The plight of people with IDD during this pandemic is no longer going unnoticed. Over 47,000 people and 57 organizations have signed our petitions. As those numbers keep rising, they remind us of the important work we are doing to protect the rights of people with IDD.
You can cast a stone by continuing to share our 2 petitions…
Ventilator Rights: The first petition asked hospitals not to discriminate against people with IDD who need a ventilator during a resource scarcity. Right now, we have 41 organizations as Official Signatories helping to spread the word! On May 27th, an addendum was added to our official policy statements addressing the potential for discrimination as some hospitals turn to the Sequential Organ Failure Assessment (SOFA) Score as a means to decide short-term mortality.
Hospital Visitation Rights: In the second petition, we urged hospitals to allow caregivers to accompany patients with IDD for in-hospital support. Right now, we have 57 organizations as Official Signatories and over 46,000 individuals helping to spread the word!
Below is a growing list of states, medical centers, organizations and press addressing this issue.
British Columbia Center for Disease Control calls for hospital visitor policies to be expanded to include DSPs for persons with disabilities.
Nuvance Health, a hospital network in western Connecticut, permits visitors for people with intellectual/developmental disabilities or cognitive impairments including dementia.
Various nonprofit organizations such as Disability Rights Connecticut and PARC Florida have compiled resources, written letters, and offered assistance with filing complaints with the Office of Civil Rights.
May 11: Maryland Department of Health and Department of Disabilities jointly issued a statement authorizing support persons to accompany, visit, and stay in the hospital with individuals with disabilities.
May 17&19: Joseph Shapiro for NPR covers two stories related to hospital visitor bans for patients with IDD.
May 18th: The United Hospital Fund reports on the effects of COVID-19 on individuals with IDD.
May 21: Medstar Health has updated their policy to allow patients with disabilities to have a designated support provider stay with them in the hospital.
May 26: Northwestern Medicine has an official policy permitting visitors for patients with disabilities who require a reasonable accommodation for assistance related to an intellectual, developmental, or cognitive disability.
May 27: UVA Health has an official policy allowing persons with cognitive, behavioral, or special needs to have a visitor with them to ensure their safety.
May 27: Alisha Glover for NJ.com calls for more resources to support individuals with IDD during the COVID-19 crisis.
May 28: Wake Forest Baptist Health has an official policy allowing visitors with patients who “need help with communication, decision-making or mobility”.
Want to join the movement? Learn More | Ventilator Petition | Hospital Visitation Petition
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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.
