*As of June 9th a press release was made for the Office of Civil Rights regarding those with disabilities bringing a support person to the hospital when admitted. I was surprised to know that this was still continuing to be an issue! Find the details here:
A few weeks ago I watched a friend live out that concern. It had been an unspoken fear for awhile as we heard that those admitted to the hospital during the Covid-19 outbreak have to go alone.
Each meal and snack I have become a broken record of “chew that food!! We are NOT going to the Emergency Room with all the germs!” Any walk we take becomes even more concerning to me, “Watch where you are going! Don’t drive into anything or off the curb…WE ARE NOT going to the ER!’. This is in addition to the excessive hand washing and social distancing to avoid Coronavirus exposure the best we can.
Then a friend asked for prayers as her son aspirated and needed to head to the hospital.
…and he had to go in alone, even though he is non-verbal. However, if you know him, he’s not without communication. His parents do a fabulous job of interpreting what he wants to say. Even my husband teared up at the thought.
I’m happy to report he was quickly sent home with his therapies to be completed at home by mom, but it sure got my fears stirred up. And my daughters began to voice their own concerns.
Turns out we are not alone with these worries.
I am both surprised and relieved that there are people who have already considered this and created resources for us:
This factual information from a non-profit organization “dedicated to protecting and advancing the civil rights of the more than 5 million people of all ages in the United States who, due to disability or other condition, are unable to rely on speech alone to communicate” was a relief to read! I am grateful for the facts and legal words they provide that explain the rights of our daughters with communication needs.
If you are a patient in a hospital or other health care setting, you still have communication and other civil rights under Titles II and III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act (ACA)—even during a pandemic. Hospitals and other health care facilities must meet your communication needs at all times. They also have an ethical duty to try to obtain your informed consent before treating or withholding treatment.https://communicationfirst.org/
I actually felt a physical weight lifted when I found the form they included to print and send along with any non-verbal patient HERE.
Knowing that I could proactive have a plan in place for their IPad to be plugged in and charged at their bedside so she could call me felt empowering. Also, the nurses are to call and allow me to read their lips or facial expressions through Facetime if needed. Print it out or bookmark the page just in case HERE.
I found a second resource, that includes another more thorough form for each state, that I would attach to the legal rights form.
A member at Stonybrook University created the “COVID-19 Disability Form which has been reviewed by ER physicians, families of individuals with IDD and adults with IDD.” It allows for more specific information about the patient, their communication, and their needs.
At the request of disability agencies nationwide, the form was amended for each state governmental agency’s Developmental Disabilities Services and the state’s equivalent of the MOLST/POLST. The goal is for the form to be completed proactively prior to seeking medical attention for COVID-19 symptoms at a hospital. Having this form, and the accompanying documents noted on page 2 of the form, will help to alert ER staff to the preferred communication with the patient with IDD and his/her needs and wishes. My hope is that everyone completes this form and never needs to use it.Ballan, M. & Perri, C. (2020). COVID-19 Disability Form. Stony Brook, NY: NY.
As residents of Pennsylvania, we would use the form found when clicking on our state HERE.
And finally, I’d consider adding this information sheet with details about our daughter.
I figure they can’t have too much information. Maybe this easy to read and printable form could help explain a little more. It’s worth a shot! Find the PDF here.
They have some good advice:
Complete the NEED TO KNOW paper and attach it to your loved one. Use a safety pin or clasp. Maybe put it in a plastic sheet protector. Make sure that it can be easily seen. This NEED TO KNOW information can include information about health conditions, disabilities, assistive tools, lifestyle and more. You can let people know about how to make the person as comfortable as possible. You can help others communicate with this person.TechOWL @ the Institute on Disabilities
Having a plan gives me a little bit of a sense of control.
Do you have any other plans or resources? Please share in the comments!