Financing Care for CYSHCN in the Next Decade: Reducing Burden, Advancing Equity, and Transforming Systems

Abstract

Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), presented by the Maternal and Child Health Bureau at the Health Resources and Services Administration, outlines principles and strategies that can be implemented at the federal and state levels and by health systems, health care providers, payors, and advocacy organizations to achieve a strong system of care for children and youth with special health care needs (CYSHCN). The vision for the financing of services outlined in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and their Families is one in which health care and other related services are accessible, affordable, comprehensive, continuous, and prioritize the wellbeing of CYSHCN and their families. There are several barriers caused or exacerbated by health care financing policies and structures that pose significant challenges for families of CYSHCN, including finding appropriate and knowledgeable provider care teams, ensuring adequate and continuous coverage for services, and ensuring benefit adequacy. Racial disparities and societal risks all exacerbate these challenges. This article outlines recommendations for improving financing for CYSHCN, including potential innovations to address barriers, such as state Medicaid expansion for CYSHCN, greater transparency in medical necessity processes and determinations, and adequate reimbursement and funding. Financing innovations must use both current and new measures to assess value and provide evidence for iterative improvements. These recommendations will require a coordinated approach among federal and state agencies, the public sector, the provider community, and the families of CYSHCN.

Therapeutic Play Gym: Feasibility of a Caregiver-Mediated Exercise System for NICU Graduates with Neuromuscular Weakness—A Case Series

“…In a recent Pediatric Physical Therapy journal article, the mobility rights perspective reimaged “the therapist as a key provider, ally, and educator of the training and technology that advances mobility equity.”18 Similarly, the American Academy of Pediatrics released their 2022 Health Care Blueprint urging that “families should be able to have care that does not present a financial burden but is also continuously available.”19 The consultative approach to caregiver-mediated exercise training with a TPG is just one example of how these new health care models could merge, reducing long waiting lists and enhancing access to both pediatric therapists and daily adaptive exercise for children in the postpandemic landscape.…”

“…17 Growing numbers of children do not have access to community-based therapy services or equipment to help them learn through self-initiated play and prevent the secondary impairments of immobility. 18,19 Gap in the evidence: There is no literature describing physical therapy interventions for the 3 rare disease diagnosis described here or early mobility interventions/equipment for infants and young children who experience long hospitalizations and cannot access community therapy services after hospital discharge.…”

“…Current evidence: Child mortality rates have improved 60% in 30 years and globally there are now 37.7% of children younger than 5 years diagnosed with a developmental disability 17. Growing numbers of children do not have access to community-based therapy services or equipment to help them learn through self-initiated play and prevent the secondary impairments of immobility 18,19…”