Navigating the healthcare system is growing more complicated by the day, especially for parents of children with disabilities. Many of my clients have had extensive contact with medical providers and hospitals, and in particular, emergency rooms. Yet, they have also encountered a surprising lack of understanding of their children’s particular healthcare needs.
One mother recently spoke with me about this. “If it’s this tough, when I’m here advocating and explaining for my daughter, what is it going to be like when she’s on her own and has either forgotten or refused to take her medication, gets confused about questions the intake nurse is asking her, or even gets up and runs out of the examining room because the lights are bothering her?” asked Betty, the mother of a teen girl with Asperger’s, a high-functioning type of autism.
With autism and other developmental disabilities on the rise (one in six children, according to research in the journal Pediatrics), it’s clear that a healthcare storm is brewing on the not-so-far away horizon. Another aspect of this simmering problem is the fact that adults with developmental disabilities are more likely to use hospital emergency rooms for their primary medical care.
With this in mind, I asked Betty for her wish list of what she would like hospitals to know about her daughter and her condition, and how they might improve the level of care for this growing population. This is what she wrote:
“Hospitals need to know that although my daughter, and others like her, may not look different or disabled, new or unusual environments can be hugely anxiety provoking for her, which might result in some unusual behaviors. Those behaviors need to be addressed with understanding, not fear.
For anybody entering a hospital, especially an ER, clear and easy-to-understand signage and directions about where to go and what to do are paramount. This is especially true for kids/adults with developmental delays, for whom transitions are really tough.
Because conditions like Asperger’s can come with strange, repetitive behaviors or lack of impulse control, a private waiting area is important, as is keeping patients informed about how long a wait to expect. If the wait is going to be long, some alternatives to sitting in a crowded room should be offered. Beeper systems, like those used by some restaurants to alert patrons when their table is ready, would give someone with ADHD or with sensory issues, for example, a chance to take a walk outside, away from the noise and confusion of the ER.
From first contact in the hospital, anyone dealing with a developmentally disabled (DD) patient should know their diagnosis, should ask if there are any sensory issues that need to be addressed (fluorescent lights, strange smells, loud noises can all cause sensory overload), and be given as much information up front as possible. They should also understand that a kid or adult with developmental disabilities is not mentally ill, and in fact might often be of high intelligence, but due to their neurological difficulties, may not be able to function at their chronological age.
If a child or adult with DD shows signs of becoming violent or that he is about to bolt out the door, staff should think about safety first, of course, but should understand that these behaviors are most likely due to fear or anxiety–fight or flight response–and should take a step back to de-escalate a situation, rather than immediately rely on restraints or confrontation.
But most of all, medical staff should know that inside a cursing or combative patient is a scared kid who needs understanding and compassion–just like any patient. And they should also realize that parents of these kids are under a lot of stress, and that they are trying to juggle their kids’ growing stress along with their own fears and confusion.”
It is during these occasions having a patient advocate can be extremely helpful–for the parent, patient, and hospital. In addition to coping with all of the above issues, there remain the underlying health problems that brought the DD patient to the hospital. While patient-centered care should be the norm and standard for everyone, with cases like this, patient-centered care becomes paramount to ensure the patient gets the care he or she needs and deserves.
Jacqueline O’Doherty is a certified patient advocate based in Peapack, N.J., with Health Care Connect, LLC.
Reprinted with permission from Hospital Impact
