Office of Epidemiology and Research, Division of Research

Advancing Applied MCH Research

Assessing a participant directed service system for low income children with ASD

Funded Projects Search

Advanced Search >>

Project Number: R40 MC 15598-02
Grantee: Brandeis University
Department/Center: Institute Child, Youth and Family / Heller School
Project Date: 9/1/2009

Final Report

Assessing a participant directed service system for low income children with ASD Final Report (PDF) Exit Disclaimer

Principal Investigator

Marji Erickson Warfield, Ph.D.
415 South Street
Waltham, MA  02454
Phone: 781-736-3833


  • Toddlerhood (13-35 months)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)


Description of project. The proposed project will evaluate a Medicaid supportive services waiver program in Massachusetts that uses a participant direction (PD) model to choose and manage services for young children with autism spectrum disorder (ASD) and their families. Families work with a support broker from one of seven local Autism Resource Centers to choose services, supports, and providers. A case manager from a state agency coordinates the clinical services, and a worker from a fiscal intermediary helps families with provider management and payment responsibilities. The evaluation has two specific aims: (1) assess how well PD systems are implemented; and (2) understand the variation in implementation across families and assess what predicts family well-being and child progress. Needs to be addressed and services provided. The PD model is designed to allow families to define their needs and choose services that meet those needs. The waiver allows these lowincome families the chance to access the additional, intensive services used by many wealthier families with children with ASD. The waiver pays for 3 years of supportive services for up to $25,000 per year, with $7,000 for equipment, home modifications, community integration, and respite, and the rest for one-to-one, in-home professional habilitation services. Populations served. The waiver now serves 100 families with incomes low enough to qualify for Medicaid. Outreach is conducted in 8 languages, and one-fifth of the applicants had a primary language other than English. The clients reside in urban, suburban, and rural areas. Research design and data collection. We propose five steps to evaluate implementation (Aim I): (1) a staff focus group to define PD program components and weigh their relative importance to success, (2) a survey of about 30 staff to assess implementation of the components, (3) interviews with about 28 staff at high- and low-scoring sites about barriers to and facilitators of implementation, (4) in-depth interviews of 16 families at these sites concerning their experiences with PD, and (5) collection of administrative and cost data. The state will use the findings to revise the PD program in 2010 and we will assess the revision. We propose three steps to evaluate the impact of the individual variation in implementation and use of services on family and child outcomes (Aim II): (1) conduct in-home interviews with 77 families who have participated in the waiver program for 18 to 24 months and 30 families who entered the program later and will have participated for about 6 months, (2) access child and family baseline assessment data from the state data base, and (3) using therapists' quarterly progress notes, develop a scale for assessing individual child progress and code data using that scale. A series of multiple regression models will test hypotheses regarding both predictors of utilization and family PD experiences and the influence of the PD experience on child progress and family wellbeing and satisfaction. Principal needs and problems addressed. The project will provide insight into the feasibility, costs, and impacts of a PD service model for families with children with ASD. It is responsive to Healthy People 2010 of producing findings to improve health and well-being of people with disabilities.


Listed is descending order by year published.

Timberlake MT, Leutz WN, Warfield ME, Chiri G. "In the Driver's Seat": Parent Perceptions of Choice in a Participant-Directed Medicaid Waiver Program for Young Children with Autism. J Autism Dev Disord. 2013 Sep 22. [Epub ahead of print] PubMed PMID: 24057132.

Warfield ME, Chiri G, Leutz WN, et al. Family well-being in a participant-directed autism waiver program: the role of relational coordination. Journal of Intellectual Disability Research. doi:10.1111/jir.12102.


Autism, Developmental Disabilities, Health Education & Family Support, Mental Health & Wellbeing, Coordination of Services, Access to Health Care, Special Health Care Needs, Insurance Coverage

Title V in Your State