Access to Care for Disabled Children under Medicaid

Long, Sharon K., Coughlin, Teresa A., Health Care Financing Review

INTRODUCTION

Medicaid provides health care to one-third of all disabled children and 7 out of 10 poor disabled children (Bruen and Holahan, 2001). Not surprisingly, disabled children on Medicaid use significantly more health care services than healthy children. They also require services far beyond basic preventive and primary care, needing care from an array of providers including medical specialists, therapists and social service agencies. Consistent with their greater service use, caring for disabled children is much more costly. One recent study estimated that Medicaid costs for children with chronic disabilities were six times greater than other children on Medicaid and accounted for about 75 percent of total Medicaid expenditures on children (Allen and Croke, 2000). If recent trends persist, disabled children will likely account for a bigger share of the Medicaid costs in the future: Over the past decade, the disabled--both adults and children--were the fastest growing enrollment group in Medicaid (Bruen and Holahan, 2001).

While the challenges of accessing care under the Medicaid Program are well-documented for the overall Medicaid population, very little is known about access to care for children with special health care needs, including how access differs for children with mental and physical disabilities (Allen and Croke, 2000; Shalala, 2000). State administrative data provide little or no information on the beneficiary's disabling condition and surveys of Medicaid beneficiaries seldom include large enough samples of disabled children to provide information on their health care experiences. Given the vulnerability of children with special health care needs and their high costs under the Medicaid Program, a better understanding of the needs and experiences of these children is needed. This article uses data from a survey of blind and disabled Medicaid children riving in NYC to address that information gap. Specifically, it explores the health care experiences of children who are eligible for Medicaid by virtue of receiving Supplemental Security Income (SSI), the Federal program that provides cash assistance to needy aged, blind, and severely disabled individuals. We examine differences in access and use of care among children on Medicaid with physical disabilities, mental illness, and MR/DD. To our knowledge, this is the first article to document access and use within the population of disabled children on Medicaid.

Having some understanding of the health care experiences of disabled children is important. Among other things, this information can help identify gaps in the current Medicaid Program, specifically whether particular groups of children are having problems getting access to particular types of care. Further, knowing more about the population will help Medicaid policymakers as they develop managed care programs for disabled beneficiaries, an idea that is being pursued by a number of States (Regenstein and Anthony, 1998).

METHODOLOGY

Data

New York Survey of Disabled Medicaid Beneficiaries

Our sample of blind and disabled child SSI beneficiaries (hereafter referred to as disabled children) is obtained from the New York Survey of Disabled Medicaid Beneficiaries, which was fielded in NYC in 1999-2000. New York was selected for study because of plans by the State to implement mandatory capitated Medicaid managed care for disabled beneficiaries in the future. The survey will provide a baseline for evaluating the impacts of the planned shift to mandatory managed care on disabled beneficiaries. The randomly selected sample of Medicaid beneficiaries was identified through State enrollment records for the Medicaid Program, with information on the primary disabling condition under SSI obtained through a match with Social Security Administration records for the SSI program. (The primary disabling condition represents the disabling condition that most readily qualified the child for the SSI program.) Child SSI beneficiaries in institutions, those receiving long-term care services in the community under Medicaid waiver programs, the homeless, and those receiving Medicare were excluded from the survey. At the time of the survey, approximately 15 percent of the SSI children were voluntarily enrolled in Medicaid managed care. Most of those were individuals who had entered Medicaid managed care while enrolled in the Temporary Assistance to Needy Families program and continued in managed care after their eligibility for SSI was established.

The survey collected information from the child's parent (or guardian) on the child's access to and use of health care. Information on the child's socioeconomic circumstances, health status, and disability information was also collected. Interviews were conducted by telephone using computer assisted telephone interviewing. In attempt to obtain responses from persons without telephones, a toll-free number was provided in an advance letter asking the parent to call in to complete the survey. Interviews were conducted in English and Spanish, with translation services used for other languages.

The overall response rate for the survey was 53 percent, a rate similar to other recent surveys of Medicaid beneficiaries (Hill and Wooldridge, 2000; Sisk et al., 1996) and general social science surveys (Kenney, Scheuren, and Wang, 1999; Massey, O'Connor, and Krotki, 1997). Virtually all of the non-response was due to an inability to locate sample members rather than a refusal by those who were located to participate in the survey. Locating information was obtained from Medicaid Program records, directory assistance, the U.S. Postal Service, online address databases, credit bureau checks, contacts with neighbors, and the use of field locators, who went out in the community in an attempt to find sample members who could not be located through other sources.

Sample weights were developed to reflect the probability of selecting each individual for the survey and to adjust for survey non-response. The adjustments for non-response were based on the administrative data available for both respondents and non-respondents, which included basic demographic information about the child (e.g., age and sex) along with primary disabling condition and ZIP Code. Relative to the administrative data, the children in the survey data were somewhat older (72 versus 68 percent age 7 or over) and more likely to be female (41 versus 36 percent). The availability of the administrative data allow us to develop weights that reduce biases that occur because non-respondents have different characteristics than respondents. Nonetheless, it may well be that some bias remains if the children who could not be located differ from those who could be located in unobserved ways that are correlated with their access to care. For example, if, as we suspect, the children who could not be located are in families with more tenuous ties to the community our sample of children in more stable families is likely to overstate access to care among disabled children on Medicaid in NYC.

Measures of Health Care Access and Use

We focus on key aspects of access to care using a standard framework (Andersen, 1968, 1995; Andersen and Aday, 1978; Andersen et al., 1983). We consider potential access--as measured by the presence of a usual source of care and the parent's report of unmet need for health care over the past year (l)--and realized access--as measured by use of health care services and parent's rating of the ease of accessing health care. The measures of health care use include visits to the emergency room (ER), …

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Publication information: Article title: Access to Care for Disabled Children under Medicaid. Contributors: Long, Sharon K. - Author, Coughlin, Teresa A. - Author. Journal title: Health Care Financing Review. Volume: 26. Issue: 2 Publication date: Winter 2004. Page number: 89+. © 1998 U.S. Department of Health and Human Services. COPYRIGHT 2004 Gale Group.

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