Characterization of Family-Directed Care Coordination and Involvement in Behavioral Treatments in an Autism-Specific Medicaid Waiver

Abstract

Services for children with autism spectrum disorder (ASD) and their families have evolved with the advent of the Medicaid waiver, leading to more family-based coordination of care. Evaluating family involvement, the current investigation compared 230 families of children with ASD receiving Medicaid waiver services to a propensity-score matched group of 230 families who were waiting for such services (i.e., registry families). Compared to the registry, waiver families reported more involvement in service planning tasks, but not activities related to future-planning, managing crisis situations, or searching for and securing funding. Additional analyses characterize waiver families as engaging in high levels of coordinating and delivering behavioral interventions for their child. Implications for family burden and future programming for waiver programs are discussed.

Appendix

I. Care Coordination Items

Frequent Activities: In a typical week during the school year, how many hours do you spend:

Anchors: Don’t Know, Less than 1 h/week, 1–2 h/week, 2–4 h/week, 4–8 h/week, More than 8 h/week.

• 1. Scheduling providers for your child^a

• 2. Talking about your child's progress with professionals who currently work with him/her^a

• 3. Managing problems or issues that arise with professionals or agencies who work with your child and/or family^a

• 4. Dealing with crises or challenges^b

  Occasional Activities: During the past 6 months, how often did you work on the following tasks:

  Anchors: Don’t Know, Not at All, 1-8x/year, 1-2x/month, 1-2x/week, 3-4x/week, 6-7x/week.

• 5. Using the internet or other resources to look for services that may help meet the needs of your child^b

• 6. Calling or emailing agencies to find services that may help meet the needs of your child^b

• 7. Fighting for services^b

• 8. Making plans for your child for the current year^a

• 9. Making plans for your child for the next year^a

• 10. Planning for your child's future for the next 5 years (if your child is age 15 or younger)^a

• 11. Planning for your child's future after he/she is 21 years old^a

• 12. Searching for grants or programs for which your child may be eligible^b

• 13. Searching for ways to help pay for the services that your child needs (for example, investigating SSI, grants or LISS)^b

^aCurrent Service Tasks Item Subset.*

^bCrisis and Funding Tasks Item Subset.*

*We have added subset labels here to facilitate interpretation of the manuscript. These are not intended to be subscales. They are rationally-derived and not necessarily empirically supported.

II. Behavioral Intervention Involvement Items

During the past 6 months, how often …

Anchors: Don’t Know, Not at All, 1-8x/year, 1-2x/month, 1-2x/week, 3-4x/week, 6-7x/week.

• 1. Did. you personally provide formal behavioral intervention that you have been formally trained to deliver

• 2. Did you create the plan for your child's behavioral intervention services

• 3. Did you train staff or others to provide your child's behavioral interventions

• 4. Did you monitor the quality of your child's behavioral intervention services