Due to stigma and “ableism”, children and young people with neurodevelopmental disorders often do not receive appropriate care and may suffer physical and psychological harm. A new National Consensus Statement and Bill of Rights aims to change this. (Photo: Adobe Stock)
National data shows that one in six children has a neurodevelopmental disorder (NDD) such as autism, intellectual disability, ADHD, etc. Their medical care is often inadequate, symptoms are sometimes left untreated and preventive care is often neglected, resulting in poor prognosis.
Clinicians may not have the time to communicate with children, teens, and young adults with NDD. Rather, these patients are more likely to experience seclusion, restraints, accidents, and injuries while in their care, which harm them physically and mentally. Here are some examples of testimonials recently provided by patients, families, and caregivers across the country:
A young man with aggressive behavior was confined to his hospital room for months and fed as an incentive to stay there. This led to him taking antipsychotic medication and gaining 30 pounds in weight with no opportunity to exercise. An autistic child was held down by several people and sedated in the emergency room. The family of an autistic boy was told he would not need home care after orthopedic surgery. Upon returning home, his mother found him ripping off his cast. There was little follow-up instruction in the emergency room, and insurance would not pay for home care services.
Alarmed by this state of affairs, Carol Weitzman, M.D., co-director of the Autism Spectrum Center at Boston Children’s Hospital, led the development of Supporting Access for All (SAFE), the first consensus statement calling for systemic change. The statement was compiled by a diverse group of health care professionals from across the country and published in the journal Pediatrics on April 10.
“Everyone deserves fair and compassionate care,” Weitzman said. “Too often, patients are told, ‘Check your disability at the door and do it our way,’ but the system needs to be open to change.”
Adoption of testimony
The SAFE team began with a two-day fact-finding conference, with 40 testimony presentations from parents, caregivers, and adults with NDD sharing their lived experiences, as well as experts from developmental behavioral pediatrics, psychology, behavioral health, psychiatry, neurology, occupational therapy, child life, and program administrators.
“It was eye-opening to listen to people’s stories and hear about the medical trauma they’ve experienced or witnessed,” Weitzman said.
Our job is to define what we need to do as a nation.
Incorporating disability awareness into healthcare
Based on this testimony, the SAFE Panel developed a series of consensus statements outlining what hospitals need to do to transform health care. The statements call for change across five areas:
Training for health care providers on NDDs and special care needs of patients, tailored to different professional roles. “This needs to be deeper, ongoing, and comprehensive, not just a one-time ‘I’ve been trained’ type of effort,” says Weitzman. “Health systems need to commit to and invest in training. All staff who work directly with patients need to learn the basics.” Communication with patients and families needs to be proactive and take into account the communication needs of children who may not speak and use alternative means of communication. “Providers should explain, ‘You’re going to need a slightly longer appointment,’ or, ‘We’re going to incorporate a communication device.’” Access and planning: Teams should develop support plans with patients and families before they receive care. Plans should take proactive steps to reassure patients, provide access to the expertise and equipment they need, and include provisions for transitioning to adult care. Diversity, equity, inclusion, belonging, and anti-ableism. Structural ableism tends to devalue and disadvantage people with disabilities. Marginalization of race, ethnicity, gender, and other identities can exacerbate health disparities. Healthcare providers may assume or feel that having a disability means they cannot live a high quality of life. Policy and structural changes are needed across the health care system, including interdepartmental collaboration, continuous quality improvement, patient satisfaction measurements, and accreditation requirements. Healthcare systems must advocate for changes in reimbursement and payment models to better support the long-term health of patients with NDD.
First, do no harm
The SAFE consensus statement fills a major gap in the health care system. “There is very little literature on how to provide effective accommodations for people with disabilities in health care settings,” Weitzman says. “Our work provides clarity on what we need to do as a country.”
In Massachusetts, bills currently before the Legislature also seek to close this gap. Both bills, S. 1401 and H. 172, are titled “An Act to Enhance Hospital Care for People with Autism, Intellectual Disabilities, and Developmental Disabilities.” The bills include training and continuing education requirements for interprofessional health care workers.
NDD Bill of Rights
Safe care means:
– Care that individuals understand and want
– Personalized care that evolves to meet people’s changing needs
– Accessible for life
– Fairly and respectfully
– Defined and measured by patient experience, quality of care, and psychological wellbeing of patients and caregivers.
“You need to be human.”
SAFE testimony provided several positive examples of NDD-informed care and demonstrated that better responses are possible.
Theresa McCarthy, a child life specialist at Boston Children’s Hospital, told the story of a child who was waiting for an X-ray and became agitated, pacing the room, then collapsing on the floor and crying loudly. McCarthy met the child there and then, sitting next to him on the floor and talking to him, introducing him to activities on an iPad. The child calmed down, agreed to take a seat, and was fine for the remainder of the appointment.
One mother shared another positive experience. Her son was experiencing a great deal of anxiety about upcoming gastrointestinal surgery. The surgical team learned that her son’s favorite song was “We Are the Champions.” They came together and sang with him on the way to the operating room. “You don’t need a degree in developmental disabilities,” the mother said. “You just need to be human.”
Learn more about the Department of Developmental Medicine at Boston Children’s Hospital.