Shafali Jeste, MD, FAAN, shares COVID-19 considerations for caregivers and healthcare providers of those with neurodevelopmental disabilities
Shafali Jeste, MD, FAAN, hosted a Facebook Live with the American Brain Foundation where she discussed guidelines for those living with neurodevelopmental disabilities during the COVID-19 pandemic. Dr. Jeste is a pediatric neurologist and an associate professor of Psychiatry, Pediatrics and Neurology at the David Geffen School of Medicine at UCLA who also serves as a member of the American Brain Foundation’s board of directors and as a director of CARING, a multidisciplinary clinical research program. In her Facebook Live, Dr. Jeste discusses COVID-19 considerations for children with neurodevelopmental disabilities, including risk factors and signs of infection as well as important resources and advice for caregivers and healthcare providers.
Posted by American Brain Foundation on Tuesday, May 5, 2020
What Are Neurodevelopmental Disabilities?
Neurodevelopmental disabilities refer to impairments in physical, learning, language or behavior areas that begin during an individual’s early neurodevelopmental period. According to Dr. Jeste, these conditions, which include autism, intellectual disability, global neurodevelopmental disability and ADHD, emerge early but affect patients for their entire lives. As a result, individuals with neurodevelopmental disabilities often need help and support beginning in childhood and through to adulthood. This may include services such as speech therapy, physical therapy and occupational therapy in addition to educational supports.
Neurodevelopmental Disabilities and COVID-19
Dr. Jeste notes that those with neurodevelopmental disabilities are not at an elevated risk for COVID-19 infection. However, she explains, “because of the fact that they have other challenges, if they do get sick with COVID or any other viral illness, they are at more risk for getting sicker in other areas as well.”
People with neurodevelopmental disabilities often have coexisting conditions. These illnesses may cause additional stress to the body and further compound health issues. Those with epilepsy, for instance, may experience a worsening of seizures with illness or fever. Other individuals with neurodevelopmental disabilities may have significant motor delays or low muscle tone, which can lead to difficulty recovering from simple respiratory infections or with breathing, especially at night, affecting the quality of their sleep.
Because some people with neurodevelopmental disabilities may be nonverbal or have severe cognitive challenges, they may not be able to communicate their symptoms or discomfort. Dr. Jeste cautions parents and caregivers to be vigilant in watching out for signs of illness. She explains that in those with neurodevelopmental disabilities, sickness can manifest in other ways: from being less alert or less coherent than normal to sleeping poorly or having a poor appetite to a worsening of other conditions such as seizures.
Dr. Jeste explains that due to the national health crisis and the safety restrictions in place, many people with neurodevelopmental disabilities have struggled to access educational and interventional services—such as speech therapy, physical therapy and occupational therapy—that they received on a day-to-day basis in school. To illustrate the impact of these restrictions on the families of children or adults with severe neurodevelopmental disabilities, Dr. Jeste reviews the preliminary results of a survey conducted through CARING.
The survey found that more than 90% of respondents had lost access to some kind of non-educational or healthcare service, with some families struggling to access medical providers they used to see regularly. Responding parents also missed the one-on-one service providers who previously administered their services directly in the home. While it is hard to find a substitute for these therapy sessions in the COVID-19 era, Dr. Jeste remarks that this speaks to their importance.
On a positive note, families also reported on the benefits of telehealth. Many families wanted more access to therapy and healthcare services provided remotely. Parents also reported that they have enjoyed seeing more of their child’s therapy services firsthand by accompanying them during telehealth visits and being part of the process.
Advice for Healthcare Providers
Dr. Jeste urges physicians to provide as much guidance to parents as they can. She notes that even a short 10-minute session can be helpful. Most importantly, healthcare providers should “Keep lines of communication open with families.” She also explains that many families have struggled to refill prescriptions, especially in places where staff is out of the office, and that when possible, parents shouldn’t have to get refills every month. “Making that medication management piece as easy as possible is important,” she says.
Additionally, Dr. Jeste tells healthcare providers to encourage families and boost their confidence during this time. “We’re a team taking care of our families,” she explains. “They’re at the center of the child’s world right now.” While this can be overwhelming, healthcare providers should applaud parents on the good job they’re doing and be a source of guidance and motivation.
Advice for Families
For caregivers of those with neurodevelopmental disabilities, Dr. Jeste advocates the practice of self-care, referencing being on an airplane and putting on your own oxygen mask before helping others. “Do what you need to take care of yourself,” she says. “If you’re not eating well, trying to exercise or sleeping well, it will be harder to take care of your child.” She encourages families to take breaks when they need them.
Dr. Jeste also advises families that maintaining a routine at home helps establish a sense of structure. This can be especially helpful in the first few hours of the morning and the last few hours before bed. In school, the educational experiences of those with neurodevelopmental delays are built around a structured environment. For those with autism especially, a visual schedule may help them anticipate what’s coming. Such a schedule can also mitigate behavior challenges and tantrums. By bookending the day with a morning and before-bed routine, caregivers can help their child sleep better, and “if we sleep well, we feel better during the day,” Dr. Jeste explains. She also cautions parents to stick to their child’s medication routine even though they are not in school.
Telehealth and Its Benefits
When working with telehealth service providers such as therapists, Dr. Jeste encourages parents to first have a 10-minute session with the provider to ask how to help facilitate the experience. That can mean sitting at the child’s side to help. It could also mean setting them up in a room without distractions or reinforcing the material covered in the session. It all depends on the child’s needs and the materials the service provider is covering.
Dr. Jeste does not believe children will regress though she acknowledges some areas may not develop as quickly with less support. But she says this will pass. “We will figure out how to support them better, even remotely,” Dr. Jeste says.
She also acknowledges that parents, healthcare providers and therapy providers cannot recreate the educational experience and resources of school but says that’s okay. For colleagues, trainees, parents and patients, Dr. Jeste explains, “We all have to manage our expectations. We need to give ourselves a pat on the back for those small victories that we do have during the day.” She also asks families to be sure to try and enjoy the time they have at home with their child or adult with neurodevelopmental disability.
Online Resources for Support and Tele-interventions
Dr. Jeste also shares resources for those providing care for individuals with neurodevelopmental disabilities during the COVID-19 pandemic. She highlights the UCLA Center for Autism Research and Treatment, which offers parents support on establishing routines at home as well as managing expectations and challenging behaviors, in addition to a wealth of other valuable information for families of those with neurodevelopmental disorders. She also recommends the Autism Science Foundation, which gives information for parents, physicians and researchers that includes educational materials, toolkits and training materials.