Duke Medical Ethics Journal
Beyond the Doctor’s Office
Supporting Children with Developmental Disabilities and Their Families
By: Sophie Hurewitz
Children and adults with developmental disabilities and severe mental health diagnoses experience significant health disparities (Berg et al., 2019). In our current COVID-19 pandemic reality, people living with disabilities are disproportionately impacted: death rates for those with developmental disorders and intellectual disabilities and people who live in group homes are particularly high. (Massachusetts General Hospital, n.d.) The physical, mental, social, economic, and political implications of the pandemic for children and adults with developmental disabilities and mental health diagnoses are increased due to “longstanding patterns of discrimination and marginalization” (Ertelt, 2020).The disproportionate impact of the pandemic throws into high relief the impact of past and present patterns of discrimination and marginalization, which manifest in a multitude of ways for children and families supporting loved ones with developmental disabilities or mental health diagnoses. Children with developmental disabilities or mental health diagnoses may struggle with negative self-esteem and negative self-perception; parents and siblings may face high levels of stress and anxiety; and entire families may be victim to social isolation and exclusion from their communities.
Multiple studies suggest that children and adolescents with developmental disabilities or mental health diagnoses acknowledge high levels of stigma about themselves and their family members. For example, a recent literature review found that children with mental health diagnoses report negative stereotypes, devaluation, discrimination, self-stigmatization, stigmatization of their community, and that they and their families were the target of stigmatization by others (Mukolo et al., 2010). Additional research highlights how self-stigmatization begins at a young age: school-aged children with learning disabilities have lower self-esteem, higher levels of negative self-perception than their peers, and perceive themselves as being less competent in areas ranging from intelligence to social skills (Barber et al., 2005; Smith and Nagle, 1995). This early onset stigma is particularly concerning given that the “cumulative effect of years of low self-esteem and negative self-perception may have significant life consequences” such as under-utilization of services and therapies in the future, lower educational attainment, substance abuse, experiences with violence and law enforcement, and isolation from family members and friends (Barber et al., 2005; Radmanović and Burgić, 2017).
"A strengthening of policy initiatives, community support systems, and clinical services are critical to the support infrastructure for children with developmental disabilities and their families. Support for this population of children and families falls into four main categories: emotional, physical, material, and informational (School of Social Work, University of North Carolina at Chapel Hill, 2015)."
The diagnostic and acceptance process regarding developmental disability or mental illness can be a long and challenging one for a child’s parents and siblings (Radmanović and Burgić, 2017). Mothers, fathers, and other caregivers of children with developmental disabilities report high levels of parenting-associated stress and poor physical health (Murray, 2017). They also consistently report high levels of anxiety about their child’s future health and productivity and poor communication with their spouse or partner (Bujnowska et al., 2019; Murray, 2017). Research shows that mothers of children with developmental disabilities who do not have professional careers are at highest risk for increased parental stress, anxiety, and poor physical health (Murray, 2017). Additionally, families who have unmet treatment and therapy needs face an increased likelihood of adverse family experiences such as unemployment, financial struggles, and increased rates of behavior problems in their children (Lindly et al., 2016). Typically developing siblings of children with developmental disabilities are among those most influenced by the developmental disability diagnosis (Murray, 2017). Typically developing siblings are often asked to care for their sibling both physically and emotionally, which can lead typically developing siblings to resent their developmentally disabled sibling (Murray, 2017). Longitudinal research reveals that siblings of individuals with mental health diagnoses have less education and lower rates of employment, and that siblings of individuals with developmental diagnoses have lower marriage rates and higher rates of divorce versus comparison groups (Wolfe et al., 2014). Examples of stigmatization extend into the larger community: siblings of children with developmental disabilities report “restricted social activities” with their peers due to the diagnosis of their sibling (Murray, 2017).
The impact of a developmental disability extends beyond the immediate family; sadly, children with developmental disabilities or mental health diagnoses and their families may also face community-level ostracization. Research describes a kind of “stigma by association” for families of children with various special needs, with especially strong stigma in rural school settings and the least in religious settings (Heflinger et al., 2014). Parents and caregivers of children with developmental disabilities or mental health diagnoses report high levels of social exclusion from their communities, with parents and caregivers of children with more profound disabilities experiencing more social restrictions and isolation (Ngo et al., 2012). For parents and caregivers of children with autism, community isolation is related to three main categories: a general misunderstanding of the diagnosis, ignorance regarding the complexity and challenges associated with caring for a child with autism, and limited recognition of the impact of the diagnosis on daily routines and the resulting need for “nontraditional” long-term planning (Marsack and Perry, 2018).
A strengthening of policy initiatives, community support systems, and clinical services are critical to the support infrastructure for children with developmental disabilities and their families. Support for this population of children and families falls into four main categories: emotional, physical, material, and informational (School of Social Work, University of North Carolina at Chapel Hill, 2015). Supporting children with developmental disabilities and their families requires a cross-sector, interdisciplinary approach. Policy initiatives should focus on educating teachers to accept and assist their students with developmental disabilities and mental health diagnoses. Helpful strategies include increasing awareness about diagnoses and helping typically developing peers to accept and acknowledge both the strengths and the challenges of their classmates with developmental or mental health differences (Murray, 2017). Community support systems play an important role in stigma reduction: institutions such as schools, religious entities, local businesses, and recreational settings play a crucial role in improving the acceptance and inclusion of children with developmental disabilities or mental health diagnoses and their families (Mazumder and Thompson-Hodgetts, 2019). Clinical settings and individual service providers have a responsibility to include children and families in all decision-making processes, planning, service provision, and referrals to community resources (School of Social Work, University of North Carolina at Chapel Hill, 2015). Teachers, service providers, peers, and community leaders alike can all make a difference in supporting this population of children and families and protecting them from adverse outcomes.
About the Writer:
Sophie Hurewitz is a junior at Duke majoring in neuroscience with a minor in global health and a certificate in Child Policy Research. She plans to become a developmental-behavioral pediatrician to combine her interests in health and education policy with clinical medicine, family advocacy, and child and adolescent development.
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