Improving Care Coordination for Children with Autism Spectrum Disorders and Developmental Disorders/Delay/Disabilities in the United States

It is widely accepted that continuity and coordination of care as a form of healthcare delivery is essential to meet patients’ comprehensive health needs regardless of geographical location or social economic status. Healthcare organizations and providers must be transformed into health services designed around diseases and for the patients. The need to “redesign healthcare delivery” in the U.S. was highlighted when the Triple Aims were introduced in 2008, and the Affordable Care Act (ACA) was signed into law in 2010. The ACA created an official and unifying position on the importance of care coordination (CC) to the U.S. healthcare system. The ACA law emphasized a primary care transformation through CC and promoting patient centered medical home (PCMH) for children and adults. ACA’s impact to CC is not limited to the PCMH model but broadly includes all efforts related to value-based care (VBC), including both payment-model and delivery-model reforms.This dissertation contributes to the general understanding of CC which is essential to the U.S. healthcare delivery system and provides the recent status of CC with a focus on high-need and high-cost children with Autism Spectrum Disorders (ASD) and DD (Developmental Disorders/Disabilities) using two large national databases. we also examined PCMH utilization across both ASD/DD and MBD. The specific questions posed in this dissertation provide insights into status of current CC through Patient Centered Medical Home (PCMH) and its association with ED visits, urban and rural differences on PCMH utilization, and healthcare utilization pattern differences from pre- and post-ACA. The findings from the first paper (Chapter 2) found MBD children without ASD had higher odds to use ED compared to non-ASD and non-MBD group. What sets this study apart from many others is that we were able to evaluate interaction terms between PCMH and health status (ASD and MBD) since the benefit of PCMH’s depends on different level of health status. The key finding from the second paper (Chapter 3) was that rural areas have more DD and MBD compared to urban areas, and children in rural areas had higher odds to report meeting all PCMH criteria compared to children in urban areas. Finally, the third paper (Chapter 4) explored the healthcare utilization pattern differences pre- and post- ACA. This is a question that, to my knowledge, has not been explored directly in the context of the broad CC at national level. We found increasing low-cost care post-ACA, but there were no downward trends on high-cost care for children with DD. Both the first and the second papers also found that more than half of U.S. children did not meet all needed PCMH components. Both these papers also provided additional insights on detailed PCMH components for children with ASD or MBD or DD. These children had higher odds to have a usual source of sick care and personal doctors and nurses, but reduction in odds to utilize the three PCMH components of having needed care coordination, family centered care, and referral. All three papers also used rich social economic data to identify social insights on children with DD. The results found certain social profiles including younger ages, having public insurance, African Americans or Hispanics, poor, and lower education levels were less likely to use PCMH and more likely to use ED. Care Coordination is an important population health issue in the U.S. This is not only due to cost savings but also the impact on children’s lifelong health, families, and communities. There is still plenty of improvement possible for all children in the U.S. Providing those essential PCMH and CC activities needs time, resources, and training for healthcare professionals; a supporting environment and policies for CC; and a focus on target populations. There is a long way to go and a significant amount work for healthcare professionals, healthcare systems and policy makers to improve PCMH and CC.

Grantor dc:publisher

University of Kansas

Year dc:date.issued

2021

Author dc:creator

• Huang, Li

Advisor dc:contributor.advisor

• Saint Onge, Jarron

• Health care management
• Autism
• Care coordination
• Children
• Developmental Disabilities
• Healthcare utilization
• Patient centered medical home

Statement dc:rights

• Copyright held by the author.

Language dc:language.iso

en

Dc Identifier Other

http://dissertations.umi.com/ku:18096

OAI identifier oai:identifier

oai:kuscholarworks.ku.edu:1808/39130