Last week I presented information and resources on how be proactive in planning for an emergency situation during this unprecedented time of COVID-19. I hope many people who had not thought about a plan for the health of their loved ones with a disability in the past have now completed one. Here are two resources I shared last week:
If you have not prepared a health plan for yourself and other family members yet, this may be a good time to prepare one.
Here is one family member’s account:
We wish we were prepared to have to leave him. My mom had to write information down in the ER for them to have because we had not already done that. We wish we knew more about the expectations of the hospital and the expectations of the days they allowed my parents’ permission for the day. (My mother never knew that if she coughed 3 times that she would not be allowed back in.)
If you find yourself in the hospital and you are told to leave as your loved one with a disability is wheeled to their room alone, here are some important things to do BEFORE you leave:
- Provide the hospital with emergency details (allergies, specific likes and dislikes; emergency contact information, etc.) and if appropriate, consider noting any of the following:
- Special diet (modified, liquid, soft foods, type of formula, tube feeding, aspiration risk, small bites)
- Soothing or calming things to help your loved one (a warm blanket, type of music, a toy)
- Daily routine (familiar routines help to make the transition from home to the hospital more comforting)
- Method of communication (perhaps your loved one understands but is unable to communicate verbally or in a way that is easily understood; for example, a certain sound can be an indication of pain or could be self-soothing)
- Unique qualities that may be helpful to someone who does not know your loved one
- If possible, provide a labeled family photo (identify each person by the name your loved one recognizes them by so the healthcare worker can have some familiarity with your family). If you do not have a photo with you, consider mailing one to the hospital social worker when you get home.
Disability advocacy organizations around the country are hearing from devastated family members who have loved ones with a disability hospitalized and alone. Although the person may not have COVID-19, the stories of isolation and despair felt by the family members or beloved caregivers are universal. They find themselves in a new, unfathomable situation: their loved one is entirely alone in their room, in some instances for the first time in their life. The family member or caregiver has been the protector, the calmer when things get rough, and most of all – the fierce advocate. The panic sets in, the nervous stomach ache, the throbbing headaches, anxiety, the feeling of helplessness. You have so many unanswered questions and thoughts: Is my vulnerable loved one confused without me? Do they think I have abandoned them? How can they call the nurse if they need help?
How can I keep my loved one with a disability safe when they are in the hospital without me?
While there is no easy remedy and each situation is different, there ARE things you can do. Remember all the years of advocacy you have provided to the person already. You are the voice and advocate needed. You know what is best. You are not powerless; you are fearless, creative, and resourceful.
Here are some of the successful advocacy efforts family members and caregivers have used when a loved one with a disability is in the hospital alone.
- First and foremost, when you are told you must leave, say, “No!” Explain that you are the person’s voice. State that this is not only a reasonable accommodation under the Americans with Disabilities Act (ADA), it is a lifesaving requirement.
- If this does not work, call your state and local representatives, the facility administrator, the risk manager, director of nursing, and the social worker on the unit. DO NOT stop calling! Insist that you be allowed to be with your loved one with a disability. Until you are allowed in, INSIST that your loved one have 24/7 sitters (hospital volunteers to sit with the person, to do all the things you would do if you were there). I learned of a family that was finally allowed one family caregiver in the room with their loved one 24/7 after four days of persistent calls and emails.
- Write a note every day. Enlist a chain of note writers. Each note should contain just a few lines with pictures of your loved one (for example, pictures of them at work, with friends, family, or at a dance brings the reality of the person). Pictures help replace the image of “patient” or “person with a disability” with who the person is: an employee, a friend, daughter, sister, or dancer. Be sure to put the names on the back so hospital staff can identify the people in the photo.
- Ask the facility to provide a two-way electronic monitoring device for the person’s room. Most hospital neonatal intensive care units use baby monitors. These devices are especially helpful for individuals with disabilities who do not use speech communication or cannot push the nurse’s button for help. It is also a great way for you or others to connect with your loved one. Insist that you speak with the person every time the staff nurse or doctor talks to you regarding his or her health status. This can also be done with a computer, tablet, or speaker phone. You can tell them that you are sorry you are not with them, that you love them, and/or let them know you are sorry they are sick. Even if your loved one cannot speak, it is soothing just to hear your voice.
Next week we will share additional tips and real-life accounts of successful advocacy efforts.
This is part 2 in a series. You can read part 1 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.