by Jordan Jankus
The author with his daughter
I didn’t have any real knowledge of people with disabilities until my daughter Jessica was born. Over the past 35 years, she has proven to be a great teacher and I have become an avid student of her and other adults with developmental disabilities.
Jessica has cerebral palsy of the ataxic variety that affects her balance and motor control. She, like many other people with developmental disabilities, also has cognitive challenges, but she is mightily aware, in her own way, of the world around her.
Her speech is difficult to understand; you might have to listen to her multiple times to get her real message. Her family and caregivers are always aware that “Mr. Gravity” is lurking nearby, intent on pulling her down from her walker with yet another fall. Her complexity is even more evident when one moment you see her enjoying Sesame Street, then next thing she’s giggling with excitement at the handsome young man at Dunkin Donuts who hands her coffee.
She, like all of us, is truly unique. I have come to know that the best way of helping her through life is to try and take the time to really listen and appreciate her as a full person.
You know what they say about assumptions? Well, I disagree. I would like to suggest several assumptions health professionals should make to provide better patient care to individuals with developmental disabilities:
- Assume there is more to the patient than their disability. A diagnosis does not fully define each person’s complexity and uniqueness.
- Assume receptive ability of your patient. Try to speak directly with the person with the disability, even though they might not always be able to respond back to you.
- Assume patient capacity and a right to personal privacy. If a patient comes to their appointment with their parents or other caregivers, ask the patient if it is acceptable that these people participate in the session.
- Assume that the patient and family have told their story dozens of times. Understand that patients and families have had to provide the same information over and over again to different professionals, often having to dredge up some difficult personal experiences. Electronic medical records and a strong dose of compassion are both very much appreciated.
- Assume you will need to say things in more than one way. Sometimes people with intellectual disabilities are so eager to please authority figures like you that their first answer might not be the true answer. Other times it is difficult to explain the course of action for treatment in the right sequential order. Try and ask the same question or state the same instructions in different ways to make sure that the patient and caregiver truly understand.
- Assume there are other options. Sometimes you will see some challenging behaviors in your patients with developmental disabilities. Before medications to limit behavioral problems are prescribed, please try and understand a person’s environment and all the non-medication options that might be utilized. Perhaps the intervention of a social worker or behavioral therapist can better address the person’s needs.
When I was growing up in the 1950’s, we didn’t see many children with developmental disabilities in our neighborhood; many of them were kept out of sight in institutions. Through advocacy efforts in the last sixty years, individuals with developmental disabilities are now living and working in their local communities, contributing to the world as best as they can.
You will see these people in your practice, so please — take a moment from your day and see them as a person first, and not just their disability. Make the right assumptions!
This piece was written by Jordan Jankus, an MPH graduate student at New York Medical College. He also serves as the Hudson Valley Regional Director of the Self-Advocacy Association of NYS, a non-profit which helps people with developmental disabilities learn to speak up for themselves and others.
