SUPPORTING ADULTS IN MEDICAL SITUATIONS
By Brad Walker, V.P., Community Living Supports
Families with adult children on the spectrum face an additional layer of concern during the COVID-19 crisis. How should they prepare for medical emergencies for their adult children, many of whom may not be able to effectively advocate for themselves? What supports can be put into place for those with communication challenges?
It is critical that adults with autism who need support, enter into any medical situation accompanied by a caregiver or family member. This minimizes confusion and anxiety, and more importantly, ensures better medical care. During the current crisis, many states have decreed that individuals with intellectual and developmental disabilities can be supported by at least one caregiver in hospitals; it is their right.
HERE ARE SOME GROUND RULES AND RESOURCES THAT MAY HELP
The adult with autism is the patient and client.
- Ask doctors, nurses, and other medical personnel to address the patient directly, in plain language.
- Help the medical providers explain conditions to the patient in the patient’s communication style, e.g. visual supports that might include pictures or communication symbols.
- Share the patient’s particular sensitivities with the providers if the patient is unable to. For example, behavioral challenges, the need for environmental structure, or a dislike of physical touch.
You are the advocate.
- Your job is to receive treatment information and seek clarity for the patient and yourself. Ask questions on behalf of the patient if they haven’t asked the necessary questions of the doctors. Be thorough.
- Help explain to the patient what is happening and the steps that will unfold during the visit and after the visit, to reassure them and calm anxiety.
- If the care will extend over a longer period of time, create a daily or weekly schedule to help the patient anticipate what will happen each day. Post the schedule in a place that is visible to the patient and others. Use pictures if that will help with understanding.
- If hospitalization is not required, but there are new medications or routines, explain them and write them out as well.
Communicate with the patient, their family, and your team
- Communicate clearly and often with the client, the family, medical staff and your agency about new information and routines.
- Write down daily updates from the medical providers and yourself in a notebook that stays next to the hospital bed for your colleague in the next shift or the family. These are not medical notes, just updates like wins, challenges, concerns that everyone can know and monitor.
- Within your agency, meet with and update the interdisciplinary team and seek recommendations from the family and clinical staff who know the patient best.
Utilize Hospital Resources
- Make sure you know the names of each doctor and nurse and understand their roles.
- Understand the Patient’s Bill of Rights (Sample below)
- If you’re overwhelmed, ask for a visit from the hospital’s patient advocate or social worker, who can help you advocate for the patient.
- Sample form to help medical providers understand needs during COVID-19 treatment.
- Information about COVID-19 by and for People with Disabilities
- Tips for adults with autism to better work with support staff.
- Sample script of what to say in a hospital situation.
- Free picture communication boards for healthcare settings
- Patient’s Bill of Rights are provided by hospitals, states, and the federal government. Sample from New York State.