Health Care:

Home Care Experiences of Families With Chronically Ill Children

HRD-89-73: Published: Jun 20, 1989. Publicly Released: Jun 20, 1989.

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Pursuant to a congressional request, GAO surveyed and interviewed parents of chronically ill children in 11 states and the District of Columbia, focusing on: (1) the parents' experiences in obtaining the necessary medical and supportive nonmedical services in the home setting; and (2) factors that hindered or eased service delivery.

GAO found that: (1) 98 percent of the 892 parents surveyed reported that their child required at least one of such medical services as physician home and office visits, medication, medical equipment and supplies, therapy, and skilled nursing; (2) about 75 percent of parents reported needing at least one of such support services as baby sitting, counseling, day care, and transportation; (3) 27 percent of parents whose children required medical services and 56 percent of parents whose children required support services reported difficulty in obtaining them; (4) factors accounting for difficulty in obtaining necessary services included significant out-of-pocket expenses due to limited insurance coverage or co-payments, lack of information about support services, and lack of personnel to ease the at-home transition of the child after hospital discharge; (5) nonurban residents had somewhat more difficulty obtaining medical and support services than did urban residents; and (6) factors accounting for some parents having little or no difficulty in obtaining services included the availability of various information sources that enabled parents to locate needed services and case management assistance provided by public and private organizations to help parents obtain services.

Recommendation for Executive Action

  1. Status: Closed - Implemented

    Comments: The Department of Health and Human Services (HHS) formed nine MCH national centers to assist states. HHS also published financial guides. MCH also published program guidance in June 1990 to implement P.L. 101-239. This guidance addressed the three issues enumerated in the recommendation. Nonfinancial benefits should occur as a result of increased coordination of service.

    Recommendation: To facilitate the consolidation and publication of information on services for chronically ill children and ensure that case management services are available when needed, the Secretary of Health and Human Services should direct the Office of the Assistant Secretary for Health to take a leadership role in developing necessary policy and program guidance for state maternal and child health (MCH) agencies. Such policy should be aimed at ensuring that: (1) information on providers and services in a given community is consolidated and made available to organizations serving chronically ill children; (2) this information is provided to parents at time of discharge; and (3) case management services are made available to those who need direct assistance.

    Agency Affected: Department of Health and Human Services

 

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