U.S. Department of Health and Human Services

Do Consumer-Directed Medicaid Supportive Services Work for Children with Developmental Disabilities

Executive Summary

Leslie Foster, Stacy Dale, Randall Brown, Barbara Phillips, Jennifer Schore and Barbara Lepidus Carlson

Mathematica Policy Research, Inc.

September 2004

This report was prepared under contract HHS-100-95-0046 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and the University of Maryland. Additional funding was provided by the Robert Wood Johnson Foundation. For additional information about this subject, you can visit the DALTCP home page at http://aspe.hhs.gov/_/office_specific/daltcp.cfm or contact the ASPE Project Officer, Pamela Doty, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. Her e-mail address is: Pamela.Doty@hhs.gov.

The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.

When the parents of children with developmental disabilities rely on Medicaid waiver programs for home- and community-based services (HCBS), they may have less control over those services than they would like. If parents, rather than case managers, could allocate the resources for their child's assistance, supplies, and equipment, they might be better able to meet the child's needs and be more satisfied with the child's care and quality of life. This study of Florida's Cash and Counseling demonstration program, Consumer Directed Care (CDC), compares children's use of services and quality of care under traditional versus consumer-directed approaches to Medicaid HCBS.

A Randomized Design and Comprehensive Surveys Provide Definitive Results

Demonstration enrollment, which occurred between June 2000 and August 2001, was open to children who were 3-17 years old and participating in Florida's Developmental Services waiver program. After their parents completed a baseline interview, the 1,002 children enrolled in the demonstration were randomly assigned to participate in CDC (the treatment group) or to receive waiver services as usual (the control group). Parents of treatment group children had the opportunity to receive a monthly allowance roughly equal to the expected Medicaid expenditures for the waiver services for which the child was eligible. Parents could use the allowance to hire their choice of caregivers and to buy other services and goods to meet their child's care needs. Program consultants and fiscal agents were available to help parents manage these responsibilities.

Service-use and quality indicators were drawn from computer-assisted telephone interviews. Nine months after baseline, we asked treatment and control group parents factual questions about their child's use of paid and unpaid personal care services (PCS), disability-related health problems, and adverse events. We also elicited opinions about: (1) parents' satisfaction with their child's care and quality of life, (2) the child's unmet needs for PCS and care supplies, (3) the child's general health status, (4) whether parents felt knowledgeable about caring for their child, and (5) how much difficulty their child had in performing daily activities. We used logistic regression models to estimate the program's effects on all these outcomes (except hours of care), while controlling for a comprehensive set of baseline characteristics.

Parents Altered Service Use, Reported Higher Satisfaction with Children's Care and Lives

Compared with children in Florida's usual HCBS waiver program, children whose parents directed their services were more likely to receive PCS from someone who was paid to help them, and their parents were happier with their care and well-being. These treatment group children received more hours of paid PCS, but fewer hours of unpaid PCS, than did control group children. Parents of treatment group children were less likely than their counterparts in the control group to say their child had unmet needs for PCS and care supplies, and they were much more satisfied with their child's overall care arrangements and with the way paid caregivers performed their jobs. Moreover, children in the treatment group were less likely than children in the control group to experience certain disability-related health problems.

CDC clearly benefited children and their parents during our follow-up period, even when we accounted for the treatment group's higher ratio of actual to expected waiver costs (as assessed in a companion analysis). From a consumer satisfaction standpoint, Florida and other states have compelling reasons to offer programs like CDC to families with children who have developmental disabilities.