In this issue of Pediatrics, Tarasoff et al1 present the results of their systematic review and meta-analysis of the risks to newborns and infants of mothers with disabilities. The research they undertook underscores the importance of health care professionals addressing both the life course perspective and barriers to health equity. The authors found that newborns of women with “any” physical, sensory, and intellectual and/or developmental disability were at an elevated risk for preterm birth and low birth weight. Some of the studies revealed an elevated risk for other adverse neonatal and infant outcomes. The authors rightfully frame their findings in the context of socioeconomic and health disparities for individuals with disabilities. The elevated risk experienced by mothers with disabilities should come as no surprise because preterm birth and low birth weight are heavily influenced by socioeconomic factors,2 which frequently co-occur with disabilities. In addition, people with disabilities experience higher rates of unmet health care needs.3,4
Disability is common. In 2018, 12.9% of Americans were limited in their usual activities because of chronic health conditions.5 The prevalence of disability increases with age, such that 6.5% of adults between the ages of 18 and 44 years (the typical childbearing years) have disabilities, compared with 43.9% of Americans ≥75 years old.5 Notably, disability among children is on the rise,6 indicating that we should anticipate greater numbers of adults with childhood-onset disabilities over time. The rates of disability are markedly higher among people living in or near poverty (26.9% and 19.5%, respectively) compared with the nonpoor, whose rates of disability are only 9.7%.5 Similarly, there is a strong relationship between race and disability, with 15.0% of Black women having disabilities, compared with 12.5% of white women.7 Poverty and racial discrimination, identified as drivers of social determinants of health, are additional barriers to health equity for people with disabilities.8
At first read of this informative meta-analysis, a pediatric health care provider might feel that addressing the prenatal health care needs of women with disabilities falls outside of their purview. The life course perspective,9 however, helps pediatric health care providers understand how health disparities are created, mitigated or exacerbated, and reproduced longitudinally across generations.10 Ample research indicates people with disabilities receive substandard sexual education that most people get throughout their youth.11–14 The lack of understanding about how disability impacts sexuality likely reduces the willingness of physicians to address it, as does the more general stigmatization of people with disabilities as nonsexual beings.15 The unique and longitudinal interactions pediatric health care providers develop with their patients and families allow for the promotion of anticipatory guidance about sexual health for children and youth with disabilities, through a developmentally appropriate, culturally respectful relationship.7 Anticipating that many young women with disabilities may become mothers, pediatric health care providers can thus help mitigate risks for poor birth outcomes in the future. In addition, pediatric health care providers can screen for sexual exploitation, adverse childhood experiences, food and housing insecurity, and other social determinants of health, making referrals and coordinating care as appropriate.16 By promoting autonomy and self-determination, reproductive health care, prenatal care, nutrition, and general health and fitness for their patients with disabilities who may become mothers, pediatric health care providers may play an important role in optimizing future birth outcomes.
And, of course, the infants born to mothers with disabilities will become the patients of pediatric health care providers. The life course perspective recognizes that trajectories to adulthood health and wellness are affected, positively or negatively, by events that start prenatally and continue throughout childhood.7 Framing interventions around the short-term management of prematurity and low birth weight is inadequate. Pediatric health care providers should emphasize a healthy and timely developmental trajectory for their infant patients, focusing on building resiliency and mitigating the downstream consequences of social determinants of health. All children should have a medical home and access to insurance and receive a free, appropriate public education,17,18 yet children born preterm or with low birth weight less commonly received care in a medical home and children born preterm less frequently had adequate and continuous health insurance.19,20 Parents with disabilities may require additional supports and resources to ensure such access for their children, as evidenced by the fact that mothers who are not in excellent or very good health more commonly reported that their children do not receive care in a medical home.21 Psychosocial screeners and parenting resources, however, are often not tailored for children and parents with disabilities.22 Addressing the gap in the applicability of screeners and resources will take extra effort on the part of pediatric health care providers.
Outside of clinical practice, it is important to recognize that pediatric health care providers have an essential role in promoting health equity through advocating for the elimination of social determinants of health such as poverty and discrimination. Disability should be understood as a dynamic interaction between health conditions and personal and environmental contextual factors.23 The framework of disability from the World Health Organization highlights that outcomes for persons with disabilities may be altered through accommodations in society and changes in policy. In our communities, we need to help close the gaps in health care as well as help eliminate social determinants of health and societal complications for people with disabilities, whether they are our patients’ mothers or the children in our practices. Despite the 1990 passage of the Americans With Disabilities Act, a civil rights law that prohibits discrimination on the basis of disability, people with disabilities continue to be stigmatized and discriminated against in all sectors of life, including health care.24–26 The intersection between disability, racism, poverty, and other drivers of inequities is an important area of future research that will further help tease out pathways to health and wellness.
Tarasoff et al’s1 study is one of a few studies which points out the importance of focusing on individuals with disabilities through the life course perspective if we are to make progress for inclusivity and diversity. Healthy People 2030 (and 2020, and 2010 before that) has been focused on disabilities, recognizing that abilities and health outcomes depend more often on society and community.27 As the body of literature on disabilities grows, we need to remind ourselves that the legal and cultural expectations have set a bar that we continually need to strive to achieve.
Opinions expressed in these commentaries are those of the authors and not necessarily those of the American Academy of Pediatrics or its Committees.
FUNDING: No external funding.
COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2020-1635.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.