Healthcare can be complicated when you have a disability. Implicit bias – a form of bias that occurs automatically and unintentionally in all of us – can impact care. Medical professionals rarely receive adequate training in how to meet the needs of kids and adults with intellectual and developmental disabilities.
So when healthcare providers put in the effort to understand and meet our needs, it has a big impact.
The Center for Family Involvement is highlighting some of the ways that doctors, nurses, and other healthcare workers have made a difference in our lives.
“18 years ago it was hard to find anyone who was familiar or comfortable with assessing autism in children who were blind. I finally found a psychologist in Baltimore. After seeing my daughter in her office and hearing my input she felt that she didn’t have enough information to diagnose my daughter. The doctor actually took a train down to spend the day with my daughter. She spent half the day with her at home and half the day observing her at school. Ultimately diagnosing her with autism and spending the entire evening with our family going over things to help us better understand ways to meet my daughter’s needs.
My daughter used to have exams under anesthesia every few months for the first 7 years of her life. Getting an IV and having the electrodes on was very scary and produced a lot of anxiety and sensory reactions in the beginning. To help ease my daughter’s fears, the surgery center would allow her to wear fairy wings and allowed me to put on protective coverings and carry my daughter into the operating room, later walking her back. And they allowed me to be there as soon as she came out of surgery to help her stay calm and remove the electrodes as she only trusted me to do that.”
“My pediatrician – she is the best in the world! She always talks to me directly, describes and tells me everything she is about to do, answers all of my questions and always asks my permission first before doing anything.
Some of the pediatric nurses at the UVA ER, in my experience, were always upbeat, spoke to me directly, described, asked permission and were gentle.”
“Our doctor’s office is a team of UVA doctors and rather than seeking our care from a specific doctor or nurse practitioner, I tend to take appointments with the first available, which means we see a lot of different people. I’ve noticed over the years that although my daughter is young and has Down syndrome, each and every healthcare provider who’s working with us speaks directly with my daughter first, trying to understand from her what’s going on. I eventually have to step in, but I love that they make this effort.”
“Several of my son’s specialists have given me their cell phone numbers or emails so I can reach them directly if there’s an issue. They know I’m not going to use it unless absolutely necessary. It brings such peace of mind know we have that option. They also recognize that my son’s medical complexities are so unique that a doctor on call might not know the right treatment.”
“As a person with a Traumatic Brain Injury with residual memory issues, one of my physicians will write down key points for me while meeting with me so I have this to take home for review and to assist with memory. I very much appreciate her efforts.”
“COVID masking protocols made everyday communication difficult for my teenage daughter who is hard of hearing and wears hearing aids. A few months ago, she went to see a new specialist. He was wearing a mask and we were too. I mentioned early on that she was hard of hearing and wears hearing aids. He immediately pulled off his mask and asked if we would be be more comfortable if he didn’t wear it. Knowing he was fully vaccinated, and we were too, we felt more than comfortable – we felt heard. My daughter could understand and contribute to the whole conversation, start to end.”
“Ever since my son was 8-years-old, he has seen a psychiatrist for mental health support. From the very beginning, during every appointment, our psychiatrist addresses my son first, before me. The doctor will ask my son how he is doing, or if he has any concerns he would like to address.
He makes a point to remember my son’s personal interests and asks about those extracurricular activities at every appointment because he recognizes the impact those activities have on a child’s overall emotional well being. It is only after my son has shared his own thoughts and concerns that the doctor will turn to me and ask for my input.
At first I was worried that I would not have an opportunity to share my thoughts but over the years I have learned that my son was his own best advocate, asks questions about medication side effects, knows the name and dosage of his medication and the reason it is prescribed. I am so thankful to our psychiatrist for modeling how to provide my son autonomy and competence when it comes to his mental health.”