The Sudden Infant Death Syndrome Program Helps Families but Needs Improvement

HRD-81-25: Published: Feb 6, 1981. Publicly Released: Mar 26, 1981.

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GAO reviewed the Sudden Infant Death Syndrome (SIDS) Counseling and Information Program, the performance of selected program grantees and contractors, the extent of voluntary groups' participation in the grantees' project activities, program administration, and procedures for awarding and managing grants and contracts. Since 1975, the Department of Health and Human Services (HHS) has provided assistance to families who have suffered a sudden infant death. Grants are awarded to public and nonprofit private entities. GAO reviewed case files and interviewed family members. Lack of sufficient data and a lack of HHS performance standards prevented a full evaluation of the project's effectiveness.

SIDS projects generally were making progress in meeting program objectives. Autopsies were generally done promptly, and SIDS was recorded on death certificates when appropriate. The projects generally saw that parents were notified of the cause of death, given information on SIDS, and offered counseling. The project's performance varied considerably in seeing that parents were notified and counseled within the period desired by HHS. Two major problems were the failure of some medical examiners and coroners to promptly inform the projects of SIDS deaths and the failure of many projects to collect sufficient data. The families GAO contacted believed the services were helpful. The extent of voluntary participation varied. HHS procedures for determining the funding of individual grantees resulted in excessive funding for several projects. HHS did not follow established procedures for making sure that grantees' unused funds were applied to the next year's funding.

Matter for Congressional Consideration

  1. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Matter: Congress should consolidate the SIDS Information and Counseling Program and the Maternal and Child Health program authorized under title V of the Social Security Act.

Recommendations for Executive Action

  1. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Recommendation: The Secretary of HHS should assure that the SIDS Program Office is appropriately staffed on a continuing basis to permit it to periodically evaluate grantees' performance and compliance with program requirements.

    Agency Affected: Department of Health and Human Services

  2. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Recommendation: The Secretary of HHS should issue guidelines on projects' appropriate use of community groups, including volunteers. The guidelines should include a clear statement of (1) the types of activities appropriate for community groups; (2) the circumstances under which the groups can be used; and (3) projects' responsibilities for ensuring appropriate use of the groups.

    Agency Affected: Department of Health and Human Services

  3. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Recommendation: The Secretary of HHS should issue additional guidance to projects concerning case management and epidemiological data they are to collect and submit, periodically evaluate these data, and ensure that only data which are needed and used are collected.

    Agency Affected: Department of Health and Human Services

  4. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Recommendation: The Secretary of HHS should enforce requirements that grantees promptly report to HHS when they will not be spending all of the funds they were awarded and assure that future grant awards are offset with unexpended fund balances.

    Agency Affected: Department of Health and Human Services

  5. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Recommendation: The Secretary of HHS should issue instructions--such as those applicable to the SIDS grant program--which prohibit panels reviewing contract technical proposals from including persons who might have reason to be biased, or might have the appearance of being biased, against any competitor.

    Agency Affected: Department of Health and Human Services

  6. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Recommendation: The Secretary of HHS should develop standards for measuring SIDS projects' performance and evaluate project performance against those standards.

    Agency Affected: Department of Health and Human Services

  7. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Recommendation: The Secretary of HHS should assure that the scope of work statement in each contract provides adequate specificity regarding HHS' requirements and expectations.

    Agency Affected: Department of Health and Human Services

  8. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Recommendation: The Secretary of HHS should establish criteria for funding SIDS grantees, considering such factors as the number of SIDS cases in their service areas and the need for Federal funding in those areas.

    Agency Affected: Department of Health and Human Services

  9. Status: Closed

    Comments: Please call 202/512-6100 for additional information.

    Recommendation: The Secretary of HHS should issue additional guidance on the content of the narrative section of SIDS grant applications and require grant applicants to submit specific, measurable objectives for those aspects of operations critical to an effective program. HHS should also issue guidance to applicants on the types of objectives appropriate for new and continuing projects and assure that projects evaluate their own performance as required.

    Agency Affected: Department of Health and Human Services

 

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