Adapted Abstract

Background and Aims: HOME is a multi-age, primary care clinic providing different types of autism services using a medical home model. This study compares the views of caregivers of autistic children receiving care at the HOME clinic to the views of caregivers of autistic children nationwide.

Methods and Results: Questions from the 2016 NSCH, a survey previously sent to 1,151 families nationwide, were sent to 129 caregivers of members of the HOME clinic. The results showed that members of the HOME clinic had more opportunity for shared decision-making, more often received family-centered and coordinated care compared to the nationwide 2016 NSCH results. HOME members also had more access to behavioral treatment and adult transition services and less medical needs that were not met.

Conclusions and Implications: A primary care clinic providing different types of autism services using a medical home model like HOME can help meet the needs of autistic individuals from childhood to adulthood.

Findings

Compared to a national US sample, caregivers from HOME reported:

• More family-centered and more coordinated care for their children.
• More opportunities for shared decision making.
• Increased access to behavioral treatments.
• Increased access to adult transition services.
• Less financial burden and less medical needs that were not met.

Summary

The University of Utah has an outpatient clinic for persons with developmental disabilities and co-occurring health conditions. This outpatient clinic is part of the Neurobehavior Healthy Outcomes Medical Excellence (HOME) program. It provides primary care and other services in the same clinic. Many professionals from the care team may attend the healthcare visit. The visits at HOME are scheduled for 1 hour.  HOME members also have access to specialist care within a large healthcare network. HOME is funded through capitated payments from Medicaid and private insurances. In previous studies, the HOME program has shown an increase in outpatient services with less time spent in the hospital for their members.

This study looks at how the caregivers of members of the HOME program evaluate their care in comparison to a nationwide sample of caregivers of children with autism. Data from the nationwide sample was collected in another study, but was used as a control group for the HOME model. The survey asked about Shared Decision-making, Family-centered care, Effective care coordination, Care within a medical home, and Transition discussions. There were also questions about medical needs that were not met.

Compared to the control group, caregivers of the HOME model reported more opportunities for Shared Decision-making, more Family-centered care, Effective care coordination, and Care within a medical home. Caregivers also reported more conversations about the transition of care with their provider and less medical needs that were not met than the nationwide sample. They also said they received more autism specific behavioral treatments and had more than 20 minutes with their doctor during their healthcare visit. These results were found after “adjusting” or considering age, sex, race/ethnicity, insurance, autism severity and intellectual disability.

Real-World Implications

A primary care clinic providing different types of autism services using a medical home model like HOME can help meet the needs of autistic individuals from childhood to adulthood.

Limitations

• There could be overlap in answers as caregivers in the home program may have answered questions for the nationwide survey as well as the survey sent out specifically based on their enrollment in the HOME program.
• There may be a participation bias for those in the HOME program being likely to participate in the study based on how satisfied they are with their care.