We pediatricians consider ourselves as compassionate professionals, optimistic about the potential of all children. This is reflected in the American Academy of Pediatrics’ equity statement of “its mission to ensure the health and well-being of all children. This includes promoting nurturing, inclusive environments and actively opposing intolerance, bigotry, bias, and discrimination.”
A committee of the Developmental Behavioral Pediatric Network developed and published a consensus statement specifically about problems in the care of individuals with neurodevelopmental disabilities (NDD) called the Supporting Access for Everyone (SAFE) initiative. All of us care for children with NDD as one in six are affected with these conditions that impact cognition, communication, motor, social, and/or behavior skills such as autism, ADHD, intellectual disabilities (ID), learning disorders, hearing or vision impairment, and motor disabilities such as cerebral palsy. Children with NDD are overrepresented in our daily practice schedule due to their multiple medical, behavioral, and social needs. NDD are also more common among marginalized children with racial, ethnic, sexual, or gender identity minority status compounding their difficulties in accessing quality care.
Dr. Barbara J. Howard
NDD present similar challenges to care as other chronic conditions that also require longer visits, more documentation, long-term monitoring, team-based care, care coordination, and often referrals. But most chronic medical conditions we care for such as asthma, diabetes, cancer, hypertension, and renal disease have clear national guidelines and appropriate billing codes and are not stigmatizing. Most also do not intrinsically affect the nervous system or cause disability as for NDD that alter the behavioral presentation of the individual in a way that changes their care.
Discrimination against individuals with NDD and other disabilities, called “ableism,” can take many forms: assuming a child with communication difficulty or ID is unable to understand explanations about their care; the presence of one NDD condition ending the clinician’s search for other issues; complicated problems or difficult behaviors in the medical setting truncating care, etc.
Adjustments Needed for Special Needs
As pediatricians we already adjust our interactions, starting instinctively, to the development level of the child we perceive before us. We approach infants slowly and softly, we speak in shorter sentences to toddlers, we joke around with school-aged children, and we take extra care about privacy with teens. This serves the relationships well for neurotypical children. But our (and our staff’s) perceptions of children with autism, ID, genetic syndromes that include NDD, or motor disabilities based on their behavioral presentation may not accurately recognize or accommodate their abilities or needs. Communication and environmental adjustments may need to be much more individualized to provide respectful care, comfort and even safety.
As an example, at this time 1 in 36 children have autism with or without ID. Defining features of autism include differences in social communication, repetitive or restrictive interests or behaviors, and hypersensitivity to the environment plus any coexisting conditions such as anxiety and hyperactivity. But most children with autism have completely age appropriate and typical physical appearance and their underlying condition may not even be known. The office setting, without special attention to the needs of a child with autism, may be frightening, loud, too bright, too crowded, fast paced, and confusing. The result of their sensitivities and difficulty communicating may lead to increased agitation, repetitive behaviors (sometimes called “stimming”), shrieking, attempts to escape the room, refusal to allow for vital signs or undressing, even aggression. Strategies for calming a neurotypical child such as talking or touching may make matters worse instead of better. We need help from the child and family and a plan to optimize their medical encounters.
If not adequately accommodated, children with many varieties of NDD end up not getting all the routine healthcare they need (eg vaccinations, blood tests, vital signs, even complete physical exams including dental) as well as having more adverse events during health care, including traumatizing seclusion, not allowing a support person to be present, restraint, injuries, and accidents. When more complex procedures are needed, eg x-ray, MRI, EEG, lab studies, or surgery, successful outcomes may be lower. Children with NDD have higher rates of often avoidable morbidity and mortality than those without, in part due to these barriers to complete care. While environmental accommodations to wheelchair users for accessibility has greatly improved in recent years, access to other kinds of individualized accommodations have lagged behind.