We are all better off when we can access healthcare when we need it and have our care options presented in a way that we understand. However, today we know people with intellectual or developmental disabilities (IDD) are being:
- Denied access to healthcare, including access to lifesaving technologies
- Denied support under hospital “no visitor” policies from people they trust to help them understand their care options and communicate with healthcare providers – this denial violates the reasonable accommodation provisions of the Americans with Disabilities Act, and
- Coerced into signing “do not resuscitate” (DNR) or “do not intubate” (DNI) orders
And, because of these denials, people with IDD are dying both from COVID-19 and treatable preventative disease as recently as this week.
But, you can help change this – and we need you to act fast!
Oregon Legislature will meet June 24
for a “Special Legislative Session.” During this special session, legislators will only consider policy bills that relate to COVID-19 or police accountability.
Today, please call or email legislators and ask them to put Legislative Concept 52 on the list of bills for consideration during the Special Session.
Legislative Concept 52 is a step toward ensuring that Oregonians experiencing disability can access healthcare, use support from people they trust while they are hospitalized and be free from coercion when making end of life decisions.
Legislative Concept 52 does this by:
- Mandating hospitals allow support people to patients as required by the Americans with Disabilities Act, consistent with the order recently released by US Health and Human Services and current OHA guidelines.
- Clarifying that Crisis Care Guidance may not include provisions that consider the presence of a disability as a determinant factor in the decision of who gets care and who does not.
- Clarifying that DNR/POLST/DNI orders are not a requirement for admission to a hospital or provision of care for a person with a disability, elderly person or resident of a longer-term care or congregate care facility and specifying that coercion of an individual or their representative to sign such orders to waive care are not permitted.
- During a public health emergency, requiring hospitals to contact Disability Rights Oregon prior to withholding or withdrawing lifesaving treatment or making a hospice election for people with disabilities who are in the care of the state when that decision is directed by a hospital or health care provider or the instrument allowing the decision was signed at admission to the hospital, after admission to the hospital or within the 14 days prior to hospital admission.
How can you help?
First, find out who represents you in Oregon! Every Oregonian is represented by a Senator and a Representative. Find who represents you by looking up your address here:
Type in your full address in the upper right hand corner, and a box will appear on the screen. In it, you’ll find three tabs. You’ll find out who your State Senator is, and if you click to the next tab, who your State Representative is. Both tabs should have an email and a phone number. Use whichever is more comfortable for you.
Second, decide what to say in your phone call or email:
Start with something like “everyone deserves access to healthcare and support from people they trust to help them understand their care and communicate with doctors. Today, too many people experiencing disability are not able to access healthcare or the support they need.”
If you have a personal story about being denied access to healthcare, denied support in the hospital or being asked to sign a DNR/DNI when you weren’t comfortable, please say a few sentences about that. It’s so important that our lawmakers know what’s happening in our communities.
Ask that Legislative Concept 52 (or “LC 52”) be added to the list of bills for legislators to consider in next week’s special session.
Third, end with saying Thank you!