In this unprecedented time of COVID-19, people with disabilities are at heightened risk, more vulnerable than ever. Is there anything you can do to help someone with a disability prepare for an unexpected hospitalization?
In the best of times, if someone is sick and needs hospitalization, we have certain expectations about how to prepare and how to support the person while in the hospital. First, we would think about all the things the person would need while in the hospital, such as their communication device, other assistive technology, or a comforting pillow, blanket, or photograph, for example. You would know what is needed to help make the transition from home to hospital a calmer, smoother one.
Additionally, we expect that while the person is in the hospital, they would have a loved one, family member, or beloved caregiver with them – a “visitor” on 24/7 watch. Other visitors may come in and out during the day. You may start a “guestbook” so that visitors can write down both critical and happy events you and they witness, thus allowing for continuity of communication and care. If you are unfamiliar, here are examples of things you may write down in a guestbook while visiting someone in the hospital:
The CT scan that was ordered this morning has still not happened (6 p.m.). Please follow up with the next nurse on duty.
We listened to radio station XYZ, and there was a lot of head shaking, laughs, and giggles.
We read chapters 6 and 7 today. Here is a brief summary….
The notes can also include recommendations such as the name of a helpful attendant, attentive nurse, etc.
Now, imagine someone you care about suddenly being taken by ambulance to the hospital due to COVID-19. Who will be there to sit by their hospital bed and hold their hand? You will not be allowed to go with them, and there are no visiting hours. It is likely that the only people in and out of the person’s hospital room will be hospital staff who will see them through the days or weeks ahead.
For a person with a disability, the need for a loved one to provide support is crucial. Think about the things a caregiver – whether family member, friend, or paid staff – does on a daily/hourly basis when the person is healthy and at home. Hospital staff do not provide all these things routinely; they do not know your loved one and could easily miss the nuances in their breathing, facial expressions, or behavior that a caregiver would recognize as life threatening.
What does the hospital need to know? What do you need to convey to keep your loved one safe? These things and more are what we need to be considering now – before a person gets sick – if we want to continue to keep people with disabilities safe.
BEFORE you and your loved one are separated as a result of a hospitalization, make sure you have a health plan in place that provides all the information someone in the health care field will need to know. It must be specific to the individual. To start, think of the things you provide at the time of a hospital admission. Remember, you are not going to be present to answer any questions or to fill out any forms when your loved one is admitted. Right now, make a document that includes the person’s name, address, emergency contact’s name and phone number, names of medications/ doses, known allergies, etc. Make sure the document goes to the hospital with the person. It helps to have a health plan for everyone in your home, and most especially for anyone who is not able to answer medical questions.
Here are two sites that can guide you in making a health plan:
- A Health Care Passport is a resource developed by Liz Perkins and colleagues at the University Center for Excellence in Developmental Disabilities (UCEDD) at the University of South Florida. This is a document that any person with an intellectual and developmental disability can take with them into a hospital, especially if family or staff or friends cannot accompany them. Although the graphics are geared to a younger user, the information requested is important. If you like, you can use it as a guide to create your own template.
- Dr. Michelle Ballan, faculty member at the State University of New York (SUNY) at Stony Brook, developed a COVID-19 form in concert with emergency room physicians and adults with disabilities and their families. They created a website and tailored a form for each state. You can access the website here. The link to the Georgia form is here.
There is a small amount of space at the bottom of each form for a handwritten note or additional information the individual wishes to include.
It is important to prepare for the worst and hope for the best. Be proactive – we hope you never have to use your health plan. But if you find your loved one with a disability on the way to the hospital – alone – you will be glad you took the time to plan.
Look for additional tips on keeping people with disabilities safe in the hospital soon.
This is part one in a series. You can read part two here.
TASH member and family member, Denise Quigley has advocated for the rights of people with disabilities at the Georgia Advocacy Office for nearly 25 years. Like many of us, she is concerned about the ways we can continue to support the people we stand beside while in the midst of a pandemic.