Primary care may be an essential cog in treatment of children with autism spectrum disorder (ASD). Studies have shown that the following are true when primary care is tailored to the needs of children with ASD:
Families are much more likely to get connected with appropriate specialty care, such as Applied Behavioral Analysis (ABA), speech-language pathology, and feeding therapy. Even just a simple phone call from the primary care provider to a specialist has been shown to greatly facilitate this transfer of care.
Parents experience less stress related to financial and economic problems. A national survey found that, without such support, families of children with ASD spend a significant amount of time coordinating their children’s care and many have to reduce or stop work as a result.
Families are more satisfied with the care they receive. Survey results suggest that, in addition to support with care coordination, parents strongly desire more time during primary care appointments to address their child’s complex needs (e.g., sleep disorders, gastrointestinal problems, seizure disorders, restrictive eating habits, etc.) and a provider with more knowledge about the management of their child’s behavioral issues. Not surprisingly, when families receive this care, they are more satisfied.
Medical professionals describe primary care that is comprehensive and family-centered with accessible physicians as a “medical home.” Unfortunately, findings from a national survey indicate that only 50% of all children with special health care needs (CSHCN) receive care within a medical home. Of this group, children with autism are the least likely to receive this type of care.
Providers report that there are a number of challenges in providing a medical home to patients with ASD, including the following:
Not enough time in the standard office visit to address the complex needs of children and families with ASD. At many primary care practices, physicians are required to maintain 15-minute visits. I once worked at one health center that demanded physicians to double book one appointment time in the morning and one in the afternoon and were only permitted to address one health concern per appointment.
Lack of practice guidelines for appropriate care. Note: The American Academy of Pediatrics (AAP) have recently (2016-2017) come out with evidence-based practice pathways to guide the treatment of issues that are common among children with ASD.
Limited knowledge and experience with behavioral management.
Lack of reimbursement for care coordination. Despite the fact that the provision of care coordination can significantly improve patients’ quality of life, insurance companies do not offer reimbursement for this time-consuming work. Consequently, it is not a sustainable practice for many health care organizations.
HOPECENTRAL: PEDIATRICS AND BEHAVIORAL HEALTH opened its doors in March 2014 with the vision of providing a higher standard of care for all children, with special attention to kids with autism. Our care model includes:
Physician availability. We offer longer appointment times to provide families with the opportunity to have multiple concerns addressed. The national average for appointment times (other than for well-child check-ups) is 8 minutes; we allow for 30 minutes. HopeCentral’s physicians are also directly available outside of business hours on our after-hours hotline.
Integrated behavioral health. As a clinical child psychologist, I wear a couple of hats at HopeCentral. I lead a multidisciplinary team that provides autism diagnostic evaluations to children and I am also a supporting member of the primary care team. In the latter role, I help our pediatricians address behavioral aspects of treatment, ranging from helping children manage their fears related to various medical procedures and parenting skills training to address temper tantrums to developing treatment plans for sleep problems and restrictive eating habits.
Implementation of AAP practice pathways for the treatment issues among children with autism.
Care coordination for families of children with ASD. We currently have a memorandum of understanding (MOU) with Washington Autism Alliance & Advocacy (WAAA) to provide family navigation to HopeCentral patients with ASD.
Tools to improve appointment. We have various tools available to help children with autism through their pediatric appointments, including “social stories,” sensory toys, and iPads.