A Guide to Navigating Hospital Stays

Hospital visits are complicated and scary, from the admissions process — those forms! — to the constant decision-making to having to communicate clearly with doctors and nurses. To help people with disabilities, and their caregivers, navigate these challenges, a guide, released late in March, is making the rounds from the Raise Center. (Raise is funded by a grant from the U.S. Department of Education Illinois-based Family Resource Center on Disabilities.)

Below is a summary, but the full resource as well as others concerning medical visits can be found here.

Be prepared for bias

“People with disabilities may be seen as having a lesser quality of life. … Due to provider bias or even refusing to take patients with disabilities, this contributes to health disparities and worse outcomes for people with disabilities.” Be ready to speak up and advocate for what’s needed.

Bring along:

One-day supply of medications/water bottle (until hospital pharmacy takes over)
ID, insurance card, phone/charger, keys
Other important papers like medical conditions/allergies, medication list in a folder with blank paper/pen to take notes

Tips for once you’re at the hospital include:

Use shared decision-making with providers in deciding on care/treatment.
Ask about supportive services if needed like physical/occupational/speech therapy or respiratory therapy.
Technology can be helpful such as bed alarms for wandering or seizures, locking bed positions/bedrails, and even cameras so caregivers can rest at night, so be sure to see what’s available.