Invited Commentary: Disability Discrimination Among Children With Special Health Care Needs Free

The problem of provider disability discrimination is well-documented in adult medical care.^1–3 The prevalence and consequences of such discrimination in pediatric care is less widely discussed but no less important. The report by Ames and colleagues published in this issue of Pediatrics thus addresses a key gap in the research literature.⁴ In their analysis of data from the National Survey of Children’s Health (NSCH), Ames and colleagues document important associations between parents’ perceptions of disability-based discrimination and children’s patterns of health care use. More than 11% of families that include children with special health care needs (CSHCN) reported having experienced disability-based discrimination in health care settings, defined as a parental report of “being treated or judged unfairly because of the child’s health condition or disability.”

Such disability discrimination is surely less prevalent than one would have found 40 or 50 years ago. These experiences remain harmful, affecting an estimated 1.54 million CSHCN, according to the NSCH data analyzed by Ames and colleagues.

Reported experiences of discrimination appear notably more common among children aged 13–17 years than among younger children and among children whose daily activities are moderately or consistently affected by their condition. These latter patterns are to be expected. When a child or adolescent is experiencing more severe disabilities, families have more opportunities to experience negative encounters with health care providers and thus to experience providers’ adverse judgments or disability stigma. Although these NSCH discrimination data display softer sociodemographic gradients that are often found, experiences of discrimination are more commonly reported by single parents than by parents in other household arrangements and are more commonly reported for children insured wholly or in part through public payers.

Reported experiences of disability-based discrimination were associated with higher odds of a past-year emergency department visit (adjusted odds ratio [AOR] = 1.45). Most concerning, reported experiences were associated with more than twice the odds (AOR = 2.13) of forgone care, defined by the survey as “any time in the past 12 months when the child needed, but did not receive, healthcare.”

The reasons for such forgone care cannot be fully parsed in these data. Reasons likely include some combination of patient or family care avoidance, as well as care forgone because of logistical obstacles, such as transportation barriers or challenges arising from competing responsibilities regarding other household members.

Common scenarios that may encourage forgone care also underscore the bidirectional causal relationships at-play. Consider the practicalities facing a single mother on Chicago’s far South Side who cares for an autistic son and his 2 siblings. His care team wishes him to regularly attend speech therapy appointments at their academic medical center and for the child and his mother to conduct regular speech exercises at home. His mother recognizes the value of such services and home exercises. Yet attendance requires multiple bus rides and awkward care arrangements for her other children. The child occasionally or frequently misses speech therapy appointments. In part because of these missed appointments, he has fallen behind on the exercises that his care team very much had hoped would be happening at home.

The care team is understandably frustrated. Public-insurer payment logistics compound their frustrations. Medicaid is a difficult payer.⁵ Their organization faces specific reimbursement challenges arising from missed appointments, which cannot be charged.⁶ The parent correspondingly feels judged and disrespected by the care team’s pointed questions and by other interactions that telegraph their frustration with her approach to her son’s care. These negative interactions may lead her to forgo other care or perhaps to pursue care through the emergency department rather than navigating the conventional appointment process to schedule a far-off, not-entirely-pleasant, logistically challenging care visit.

Such scenarios underscore the necessity of collaborative approaches to patient care that embrace families and children as valued partners in decision-making roles. From the care team perspective, it may be most productive to approach the child’s family with an attitude of curiosity and a clearly communicated intention to engage in joint problem-solving. When providers take the opportunity to listen to a parent who describes the barriers she encounters accessing services—poor transportation options, punishing parking fees, disrupted school attendance for the child and sometimes siblings, and challenges to her own work schedule—providers and families can begin problem-solving. Team members, including social workers and care coordinators, have information about resources and other options that may alleviate some of the burdens that prevent this family from fully engaging in the recommended care plan. Consistent, respectful collaboration is likely to increase trust between the family and the provider. This may decrease missed appointments and improve parent-provider relationships.

As Ames and colleagues acknowledge, such scenarios underscore the accompanying challenges and the need for focused qualitative research involving medical providers, caregivers, and patients. Such research can explore facilitators and barriers to collaborative care, as well as patient, family, and provider perspectives regarding potentially conflictual interactions. Nurses, social workers, care coordinators, and peer support specialists are particularly well positioned to report on these facilitators and barriers. Qualitative research can explore the dynamics that sometimes lead patients not to receive needed care. Such research can explore parents’ and providers’ perspectives regarding the likely consequences of such forgone care for patient and family well-being.

Qualitative research can also explore sensitive issues that are difficult to address in population surveys. Condition-specific stigma is one obvious domain. A child with cystic fibrosis elicits different reactions from many providers and caregivers than would, for example, a teen with Fragile X Syndrome who displays psychiatric comorbidity or accompanying aggressive behaviors. Compared with 50 years ago, overt blame is less commonly placed on parents today regarding autism and other conditions.⁷ Parents still experience pejorative judgments in many domains.

Parents and pediatric care teams harbor different perceptions and goals regarding effective approaches to patient care. Conflict and disagreement will sometimes arise from these differences. Care teams also comprise human beings who want what’s best for a child in their care. If members of that team believe a parent is providing suboptimal care for a child with disabilities, they may interact with that parent in ways the parent interprets as arising from disability discrimination. In fact, these interactions reflect providers’ human concerns for their patient. At the same time, providers are not positioned to always know families’ practical constraints or to fully appreciate other aspects of families’ life circumstances that may promote imperfect adherence to care plans. In these encounters and others, health care providers, family caregivers, and patients must respect and embrace each other as imperfect but valuable partners in the lifelong journeys that frequently accompany disability care.

CSHCN

children with special health care needs

NSCH

National Survey of Children’s Health

AOR

adjusted odds ratio