Abstract
The number of children living with a disability is substantial and expanding. Children with disabilities and their families are disproportionately exposed to adverse experiences, increased stress and stigmatization, face more barriers, and are more likely to be diagnosed with mental health disorders. Unfortunately, adequate and specifically tailored professionals, programs, and interventions aimed to enhance resilience, support families, and decrease stigma have not increased proportionately. Certified Child Life Specialists (CCLS) promote coping, validate emotions, and use play-based techniques to build relationships and increase understanding of difficult experiences. By increasing the availability of Certified Child Life Specialists in community settings, children with disabilities and their families will gain additional advocacy, insight, and opportunities to lead fuller, more supported lives.
TopIntroduction
With advances in science, technology, medicine, and life-saving interventions, children with disabilities, complex medical needs, and comorbid conditions are living longer lives with more specialized interventions. The number of children defined as having a disability has steadily increased throughout the last decade (World Health Organization, 2021). With over two hundred and forty million children and young adults globally categorized as having disabilities (Unicef, 2021) and disability strongly correlating with poverty and inequity (Kuper et al., 2014), Child Life Specialists must expand services beyond the hospital to decrease the risk of trauma and increase access to quality care.
Universally, children with disabilities experience more adverse experiences such as abuse, neglect, and maltreatment (Ammerman, 1997), have challenges with maladaptive behaviors, difficulty communicating their needs, experience more healthcare exposure with less access to quality care (World Health Organization, 2021) and have undermanaged pain experiences (Breau & Burkitt, 2009). Interpersonal relationships can also be challenging due to stigma, isolation, bullying, attachment challenges, and communication barriers. These factors often lead to undesirable and unsafe behaviors, negatively impact mental health, and contribute to lifelong health disparities.
Disability-related stressors also affect family members. Caregivers with increasing responsibilities have less time to manage myriad emotions that accompany having a child with a disability. Caregivers must manage additional care, services, behaviors, and educational opportunities and are responsible for ensuring the quality of life for their child. These stressors have been noted in families globally (Olawale et al., 2013; Cheshire et al., 2010; Basaran et al., 2013; Wu, et al., 2017). In order to ensure adequate adjustment for the future, professionals must address the individual and unique needs of siblings. Siblings function better long term when they receive specific interventions to process their experiences.
Advocacy and providing quality care that focuses on strengths and individual needs are essential to optimize functional outcomes, yet barriers remain. Despite the need for interventions, adequate and equitable services have not increased proportionally, and access to quality services is not universally available. These gaps should be considered an opportunity for growth and improvement and can be mitigated with the professional skills of a Certified Child Life Specialist (CCLS).
Child Life Specialists focus on normalizing experiences, supporting and validating emotions, and processing potentially adverse and traumatic experiences while considering the perspective of the individual, family, and culture with a resilience-focused, family-centered lens. Their expertise in play-based interventions and emphasis on the value of building and maintaining relationships allow for unique expression and processing of experiences. This combination of professional scope and individually-tailored interventions is particularly impactful for children with disabilities but is limited to pediatric hospitals and emergency departments where Child Life Specialists primarily practice.
To positively impact the lives of children with disabilities, Child Life Specialists need to focus on meeting the needs of children with disabilities while becoming a standard of care in community settings. Settings include but are not limited to schools, daycares, respite care, outpatient clinics, rehabilitation centers, day programs, and relevant community nonprofits. Additionally, the case for employing Child Life Specialists in young-adult and geriatric facilities is warranted to ensure adults with disabilities continue to receive resilience-enhancing services, particularly regarding potentially traumatic medical procedures, transitions, and other triggers.
This chapter connects the specific needs of those with disabilities and the unique professional scope of Child Life Specialists constructed through theory, evidence-based practice, and case studies.
Specific chapter objectives:
Key Terms in this Chapter
Complex Medical Needs: Medical conditions that are persistent, prolonged and require extensive medical oversight to manage over time. Complex medical needs often present comorbidly and impact quality of life and activities of daily living.
Sensory Seeking: The compulsive need for continuous sensory input to regulate.
Neurotypical: Neurological functioning that does not deviate from what society considers as developmentally normal or functional.
Neurodiversity: The viewpoint that deviations from what society considers ‘typical’ neurological functioning, cognition and behavior is common and acceptable. Ranges of functioning occur naturally and should be accepted by society at large.
Disability Culture: The conceptualization of disability being its own culture with a unique history, norms, aesthetics, community, language, beliefs, behaviors and ways of living that specifically pertain to those having a disability.
Sensory Integration: The ability to categorize and absorb sensory information in a way that allows for adequate responses and appropriate functioning.
Trauma-Informed: A model of care that presumes most individuals have experienced and been affected by trauma in the past. Trauma-informed practices seek to understand how the presence of past trauma affects behavior, decisions, health, and relationships.
Strengths-Based: Conceptualized interventions focused on individual strengths (i.e., what they have and are currently doing positively) and viewing individuals as resilient and resourceful rather than focusing on their deficits, failures, or mishaps.
Presuming Competence: A strengths-based approach that making the assumption, when working with individuals with disabilities, that despite their potential inability to articulate, speak, or communicate verbally, a basic understanding of what is being said to them (receptive language) is present.
Sensory Avoidant: Avoiding sensory stimuli due to aversion or dislike.
Sensory Regulation: The ability to match arousal responses and states appropriately to the presented environmental stimuli (i.e., quiet voices in a library or dancing at a music hall).