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ACLP Bulletin: Summer 2016

Specialized Resources: Preparing Teenagers and Young Adults with Developmental Disabilities and Behavioral Concerns and their Caregivers for Transition to Adult Care

Mary Faith Roell, MS, CCLS
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH

A comment I occasionally hear prior to a procedure may sound something like, “The patient is 17, so he should be fine.” Once I have delved a little further, I may find that this 17-year-old’s cognitive development is that of a 5-year-old, but he is the size of a linebacker and has had difficulty with the most basic health care encounters, such as stepping on the scale, transitioning from the waiting room, or even getting out of the car. This same 17-year-old’s caregiver might request a Barney & Friends DVD for him during the wait for the provider. I often wonder how this patient will do in an adult setting, where there are no children’s videos, preferred motivators, or sensory items for patients with developmental differences, let alone knowledge about how to support patients with behavioral difficulties.

In the pediatric setting, staff regularly deal with the varying developmental levels of children and can usually adapt accordingly. Once a patient begins to transition into the world of adult primary care, how can we help the patient and family, knowing that some primary care providers and their staff may have less knowledge or understanding of the difference between chronological age and developmental age, much less the functions of behavior for a patient with autism or other developmental disabilities? A search for resources for teenagers and young adults with developmental disabilities and behavioral concerns transitioning to adult care reveals how little has been written or developed to address this need.

According to Minnes and Steiner (2009), parents of children with Down syndrome report limited medical services if someone is not available to identify, interpret, and support the patient’s needs. For example, a mother reported her daughter becoming “hysterical” (which could be a typical baseline behavior) with a PAP smear, so in follow-up care, the physician never tested her again. Reasons for these limitations included practitioner attitudes, such as fear and leeriness due to a communication barrier (Minnes & Steiner, 2009). Binks, Barden, Burke, and Young (2007) found that child-focused developmental programs, such as continuity of care and family engagement, were poorly available in the world of adult services. Only one-fifth (21.1%) of youth with autism spectrum disorder receive any transition planning (Kuhlthau, Warfield, Hurson, Delahaye, & Crossman, 2015), and there is limited understanding among adult health care providers of this population’s unusual or unexpected sensory responses to environmental stimuli, as well as their often-increased anxiety associated with entering new and highly stimulating environments (Aylott, 2010).

Typically within transition planning, the pediatrician is responsible for sharing current health information, medication management, medical and psychosocial history, and patient summary information with adult health care personnel. Unfortunately, for patients with developmental disabilities and behavioral concerns, there is rarely anyone directly responsible for helping the patient and family prepare for the transition and seldom anyone to address the psychosocial concerns. With typical transition planning, a large focus is on preparing the young adult for self-care and independence, but many young adults with developmental disabilities and behavioral concerns will not be independent and able to take on the responsibilities of managing their health care. Therefore, helping families and caregivers share strategies and supports and advocating for adaptations in care can make all the difference for patient outcomes, and child life is well suited for this role.

Since there are limited available resources, I wanted to provide colleagues with information to share with families and caregivers. This information is based on interventions, recommendations, and adaptations that I have utilized through my work with the Adaptive Care Team at Cincinnati Children’s Hospital Medical Center. Teaching families and caregivers to advocate and share recommendations with health care providers prior to appointments can potentially help ease the transition and reduce the negative impact that an unexpected outburst can have on the patient participating in a medical appointment. In some cases, an outburst can even have an impact on the flow for the whole medical system with the potential of multiple staff being required for de-escalation. Below are some ideas of what can be done within child life’s scope of practice:

As you are helping to plan the transition to adult care, ask the caregiver if the patient has difficulty with any of the following:
Communication – How does the young adult get his wants and needs met?
Sensory Concerns – What type of sensory sensitivities impact the young adult? Do touch, sound, or light cause problems, or is the patient a “sensory seeker”?
Environmental Stimulation
     - Does the young adult have difficulty with crowds, too many people talking at once, or people asking 
     too many questions?
     - Does the young adult have difficulty with transitioning or waiting?
     - Does the young adult have difficulty complying with demands or requests, or being told no?
     - Does the young adult have anxiety around unfamiliar people or environments, or in health care
      encounters in general?

If the answer is yes to any of the above questions, remind caregivers that they are the experts about the patient’s psychosocial needs and encourage caregivers to:
     -Prepare not only the patient, but also the staff, for the new visit.
     -When they call to schedule appointments, ask the question, “How familiar is your staff with patients
      with developmental or behavioral difficulties?” and to share strategies they have found helpful for
      anxiety-producing situations.
     -Share accommodations that have been beneficial in the past that may help the new staff prevent
     problems. Adaptations may include limiting touch until the end of the appointment for a patient with
     sensory sensitivities, or using the “Tell, Show, Do” method of preparation, first/then language, or a
     visual schedule for a patient with communication limitations so that the patient is aware of the steps of
     a procedure.
     -Ask whether the clinic or medical setting recognizes the impact of environments and sensory
     stimulation on coping in this population. Sharing with the practice can facilitate understanding that
     having to wait in the waiting room or make several transitions can cause anxiety and a possible
     behavioral outburst from the patient.
     -Share with the new staff what typically upsets the patient and the reactive behaviors that may ensue.
     It is important that the provider not assume cognitive impairment when a patient is nonverbal or
     appears uninterested. This type of information sharing is more effective than the patient having a
     complete meltdown, and leads to better health care outcomes.

Below is a list of resources with more questions and checklists that could be helpful. It is beneficial for providers to receive this information directly from the caregivers; therefore, I encourage caregivers to make their checklist specific to their young adult.

Mary Faith Roell, MS, CCLS, is part of the Adaptive Care Team program at Cincinnati Children’s Hospital Medical Center, which works with patients with developmental and/or behavioral conditions who have difficulty with coping and cooperating during health care visits.


Aylott, J. (2010). Improving access to health and social care for people with autism. Nursing Standard, 24(27), 47-56.

Binks, J. A., Barden, W. S., Burke, T. A., & Young, N. L. (2007). What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Archives of Physical Medicine and Rehabilitation, 88(8), 1064-1073.

Kuhlthau, K. A., Warfield, M. E., Hurson. J., Delahaye, J., & Crossman, M. K .(2015). Pediatric provider’s perspective on the transitions to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions. Autism, 19(3), 262-271.

Minnes, P. & Steiner, K. (2009). Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome. Child: Care, Health and Development, 35, 250–256.