Children with disabilities and their families form unique relationships with their pediatrician, nurses, and the staff at pediatric practices. Engaging with these families can ensure better outcomes for physical and emotional health, reduce bottlenecks in receiving care, and can define your practice as a trusted resource for kids who need a little more medical support. Learn how your practice can establish itself as a place families can depend on and trust to support them over their child’s life.
Support Children, Not Just Disabilities
It’s important to start out a discussion about disability by acknowledging that it’s difficult to discuss disability broadly, and that every patient and family’s experience is unique, and their needs will be, too. Disabilities may include autism spectrum disorder, anxiety, deafness, birth defects, cerebral palsy, and many, many more diagnoses. The responsibility of the physicians and nurses overseeing a child’s care is not only to treat disability, but to support the whole health and happiness of the child, and to provide necessary guidance to caregivers so that a child’s medical needs are best supported at home, at school, and at play.
Support for these families will look different for each case. A child with cleft-lip/palate may require collaboration with educators, surgeons, and speech-language pathologists, while another child’s disability may be sufficiently managed with simple interventions, such as medication for asthma.
If pediatricians’ aim is to support the whole health of any child, including those with disabilities, why should you focus on supporting these families at your practice? Children with disabilities need tailored support from a medical home who is ready to act as advocate, collaborator, and supporter. A practice who engages with families in this way can gain a reputation as a trusted place for families to call when their child needs extra support, when their accessibility aids are challenged by insurers, educators, or peers, or when parents need simple reassurance that their kid is going to be fine. Pediatricians can also help improve care for kids with disabilities, extend their experience to other families and physicians, and help families advocate for national and local issues related to disability.
Supporting Pediatric Disabilities by Law
Federal and state laws exist to support the education of children with disabilities and to ensure that both children and adults have accessible ways to work, live, and play. Besides the need for pediatricians to be familiar with their responsibilities under federal and state laws, pediatricians can also support and engage with families by supporting their understanding of a child’s rights.
IDEA (Individuals with Disabilities Act)
According to the National Center for Learning Disabilities, IDEA or the Individuals with Disabilities Act is a federal special education law designed to ensure that children may receive free public education and may learn in the “least restrictive environment”. IDEA requires that all U.S. states and territories must comply at a minimum with all of the protections in the act.
To best understand how federal and state laws will affect your practice, physicians and managing staff should familiarize themselves with both the Individuals with Disabilities Act and their state’s requirements. For example, New York State participates in the Early Intervention Program (EIP) which is optional under IDEA. This program provides zero-cost access for families to interventions for children from birth to age 2 for support for their disability. Pediatricians in New York State are therefore able to refer young children for these services.
Americans with Disabilities Act (ADA)
Signed into law in 1990, the Americans with Disabilities Act (ADA) is a law designed to support children and adults with disabilities to ensure equitable access to healthcare, business services, education, and accessibility.
For pediatricians and all healthcare professionals, the requirements of the ADA include but are not limited to:
- Patients must be able to have “full and equal” access to the office and its services no matter their mobility status (ramps, Braille handouts, American Sign Language interpretation)
- Doors and hallways inside the office must be accessible
- Patients must be seen by the pediatrician in a timely manner, just as with any other patient
- Patients in wheelchairs should generally be examined on an exam table, not in the wheelchair
- Staff should receive the appropriate training in order to ensure their and patients’ safety (e.g., when lifting a patient)
- A pediatrician may not refuse to treat a patient with a disability
Knowing the requirements of IDEA and the ADA can ensure your practice’s building is accessible for all patients and parents, and that physicians and staff are appropriately trained.
Why Should You Advocate for Disabled Kids?
A child growing up with a disability, as well as their caregivers, depend on their pediatrician to be the first line of information and guidance to balance their health with the child’s development and well-being. Advocating for the rights of disabled people is an opportunity for all pediatricians to share their experience supporting families whose needs must be recognized in order to give their child an equitable childhood, education, and if necessary, transitional support into adulthood.
It’s important to remember that families and patients may choose to advocate for themselves, and engaging with their efforts is a great opportunity for pediatricians to learn. Living with a disability does require more time and energy from families to complete daily tasks, attend school, or attend medical appointments, so a family may also choose not to actively advocate. For practices who wish to show support for kids with disabilities, it’s important not to single any patient or family out, but to show general support – such as celebrating World Autism Day.
Here are some ways pediatricians can advocate for kids with disabilities.
A child’s Individualized Education Program (IEP) is a legal contract that outlines the support the child may receive at school. An IEP offers students the right to environments and tools that will enable them to best receive an education at no cost to their families. IEPs may include the right for a child to sit an exam in an alternate, quiet location; to receive special education services with the help of a teacher’s aide; even to use objects like fidget spinners to expend energy in ways that don’t disrupt the classroom.
If a patient is struggling in school or has new or upcoming changes to their medical care, it’s a great time for their pediatrician to engage with the child’s IEP annual review. In this review educators, parents, and physicians can revisit challenges, track a child’s progress, and aim for goals for the next school year. This is a great chance to help educators and school nurses better understand a child’s healthcare needs, including the use of sensory aids, upcoming medical appointments or procedures, medications, and even guide school staff through how to help a child use a less-common medical device, such as a colostomy bag.
A child has the right to any tool or supports the IEP outlines. Advocacy is not only actively supporting a child’s right to this support, but also identifying when a child’s needs are not being met and stepping up to make it right.
Specialists & Other Pediatricians
Yes, you can be an advocate for disability and share resources with other medical providers! The list of disabilities is long, and each diagnosis presents as uniquely as each child’s personality does. Over time, you may realize you’ve learned a lot about autism, the Deaf/Hard of Hearing community, speech disorders, or any other disability. Advocacy can look like learning more, asking questions, and then educating others.
Specialists are great resources and collaborators for a child’s health. It may be hard for your families to access the needed pediatric specialty, or the only specialists nearby may be for adults. Coordination with specialists from a distance can be a lifeline for families, to prevent the time and money required for trips to specialists. Ask specialists what you need to know about your mutual patient, and offer to provide certain procedures yourself, when appropriate, such as removing sutures, assisting a child trying out a new mobility device, or following up on medications.
A pediatrician’s role is to understand how best to support a child’s health, whether they have a disability or not. Support for disability goes beyond healthcare, however, and extends to community, accessibility, communication, and how families are welcomed at your practice. As policy and healthcare technology develop, it’s important to include training for physicians and staff at your practice to be sure you’re supporting families in the best way possible.
Training can be formal, such as CME courses for physicians and nurses on the nature and support of certain disabilities. You might also ask educators, social workers, or a specialist to provide feedback for your staff to help accommodate a patient’s needs.
Don’t forget, part of diversity in the workplace includes disability, too. Your practice should also be able to grant reasonable requests for accommodation to employees with disabilities. If they wish, these employees may have thoughts to share on working with kids with disabilities, but they are never required to offer this insight. Learn more about disability in the office here.
Families with disabilities want empathy, compassion, and fun at their pediatrician’s, just as any other family would. Pediatricians who engage with these families can help build trust, advocate for the rights of children, and solidify sometimes life-long relationships. As frequent “shoppers” at your practice, these bonds are unique and sometimes challenging, but never without reward.
Interested in hiring more diversely to include employees with disability, or do you simply want to build a practice filled with people who value the same opportunities for disabled children as you do? Learn more with our webinar with PedsOne pediatric billing founder Tim Rushford, and find out how an “inner-view” of your next candidate can help you connect on more than resume and salary talks.