According to the 2022 summary of the Maternal and Child Health Bureau’s National Survey of Children’s Health, more than 14 million children had special healthcare needs. These children, in particular, are more likely to experience chronic physical, developmental, behavioral or emotional conditions and require added care and services.
This is why health equity for children with special needs, disabilities, or autism needs to be carefully examined. These individuals face significant challenges in accessing quality healthcare, leading to disparities that can have profound long-term effects on their well-being and development.
Deloitte’s 2021 report, Breaking the Cost Curve, described how new business models, technological breakthroughs, personalized data, and regulations that could encourage change would dramatically slow down healthcare spending by 2040. However, health inequities remain a major barrier to this goal.
Inequities in the US health system cost around $320 billion and could surpass $1 trillion in yearly spending by 2040 if it remains unaddressed.
Systemic Challenges in Healthcare Access
The US Office of Disease Prevention and Health Promotion (ODPHP) defines a health disparity as “a health difference that is closely linked with social, economic, or environmental disadvantage.”
Children who experience unique healthcare needs experience these disparities in medical care and services. Some key points from the National Survey of Children’s Health are:
- Children and youth in this category were nearly four times as likely to have unmet care needs as their peers.
- The most common reasons for unmet needs were related to cost and appointment availability.
- Fewer than 2 in 3 kids with special needs had adequate health insurance to cover the services needed.
- Fewer than one in four youth with special needs, ages 12 to 17, received plans and services for adult health care.
Race, geographic location, and socioeconomic status compound these challenges, impacting the accessibility and quality of healthcare these children receive.
Sheila Thurman, DDI Director of the Office for People With Developmental Disabilities (OPWDD) Nursing Services, notes, “Many barriers exist to achieving health equity for people with disabilities. Having Medicaid-only insurance is a major limiting factor. Inadequate comprehensive and preventative health measures lead to poor outcomes and poor monitoring of chronic conditions.”
Within the health care system are multi-payer federal and state and Medicaid-specific initiatives focused on addressing social needs. These include models under the Center for Medicare and Medicaid Innovation, Medicaid delivery system, payment reform initiatives, and options under Medicaid.
Managed care plans and providers also identify and address social needs. For example, 19 states required Medicaid-managed care plans to screen for or provide referrals for social needs in 2017, and a recent survey of Medicaid-managed care plans found that almost all responding plans reported activities to address social determinants of health.
Barriers to Communication and Quality of Care
Effective communication is vital in healthcare, yet children with complex needs or who are non-verbal often struggle in this area. Inadequate communication can lead to misdiagnosis and suboptimal care.
Additionally, the quality of care is frequently compromised, with children with special needs or autism not always receiving coordinated, continuous, timely, and inclusive care.
Thurman explains, “We will have health equity when every person has equal access and opportunity to achieve their highest levels of health. Children and adults with complex mental, physical, and behavioral needs due to autism or other disability often cannot verbalize how they are feeling. Being unable to communicate their signs and symptoms of wellness or illness can lead to misdiagnosis.”
Social determinants of health (SDH) also play a crucial role in shaping the healthcare experiences of children with disabilities. Family income, job security, insurance access, and living conditions can create additional stress and impact these children’s overall health and well-being. Addressing these social determinants is essential in mitigating the health disparities faced by children with disabilities.
The Importance of Policy and Legislation
Policy and legislation can help in advancing health equity for children with disabilities. Initiatives such as providing Medicaid reimbursement increases for diagnostic and treatment centers can help address the healthcare crisis facing families and individuals with disabilities. Supportive policies and legislation are crucial in ensuring access to necessary healthcare services.
Thurman emphasizes, “Policy and legislation play a huge role in advancing health equity for those with disabilities. Currently, in New York, we are calling on Governor Hochul and our elected officials to address the crisis facing families, staff, and individuals with disabilities. This is the only way to keep health care available for New Yorkers with disabilities. Providing Medicaid reimbursement increases for freestanding Article 28 Diagnostic and Treatment Centers is both the right and the fiscally responsible thing to do.”
Data-Driven Approaches and Economic Impact
Leveraging data and technology can help develop targeted interventions and policies to address the disparities faced by children with disabilities. Furthermore, addressing health disparities can unlock economic value and improve the quality of life for millions of individuals. Investing in health equity is both a moral imperative and a smart financial decision.
Achieving health equity requires a multifaceted approach that addresses systemic barriers, improves communication in healthcare settings, enacts supportive policies and legislation, and leverages data for targeted interventions.
As Thurman rightly points out, “Health equity is important for individuals with disabilities because it is only fair that our most vulnerable receive equal access to the same high level of quality care as everyone else.”
By committing to these efforts, we can ensure that our most vulnerable populations are not left behind and have the opportunity to attain their highest level of health.
