Documenting Service Use and Satisfaction Across Time In Families

Background: The pervasive and complicated nature of ASD has led to service provision through a variety of service sectors that constitute what can often be described as fragmented system of care. The exact nature of an individual child’s intervention program will depend upon a variety of clinical and non-clinical factors, including individual child and family characteristics, state and local policies, and intervention availability. Data is needed on the sequence of events that lead to service use patterns and changes in service use over time and a better understanding of the many factors that influence parent needs and service satisfaction.

Objectives: To examine the utility of a prospective approach for obtaining information about service use patterns, changes in service type and intensity over time, and the role of the parent in this process. As part of a pilot study of the long-term benefits of a parent training program, information about a prospective services survey approach was obtained and closely evaluated from a small group of families.

Methods: Four families who had a child with ASD (ages 2 to 4) participated in this 12-month study. The mother of each child was contacted on a monthly basis and the Ongoing Services Survey was completed over the phone. This survey was developed to obtain information about the amount and type of individual and educational intervention services received by children with ASD. For each service received, information about funding source, parental opinion of progress, and satisfaction with services was also obtained.

Results: All children in the study experienced a number of changes in service provision during the 12-month period. These included transitions from individual therapies to school-based programs, changes in providers, decreases in service provision due to changes in funding eligibility and consideration of individual child needs. The amount of time spent in individual intervention and educational programs ranged from 8 to 32 hours per week (mean=26 hours). The number of different individual services (outside of educational programming) ranged from 1 to 6 (mean=3.9). Parental opinion of child progress and satisfaction with service provision were generally positive and correlated but varied across services for each parent and fluctuated from month to month, particularly as services changed. Parental comments provided more detailed information about reasons for changes in services and the parental role in service advocacy.

Conclusions: This type of prospective monthly survey approach provides a means for obtaining accurate information about the variety of services obtained by young children with ASD and for examining the role of the parent in service use. Monthly contacts with the parent, either over the phone or in person, is likely to be more convenient and reliable than requesting parents to maintain their own services log. Additional sources of information, such as from the service providers and funding sources may be helpful for learning more about factors impacting service provision and how these factors ultimately may affect child and family outcomes.