RD181 - Report to the House Appropriations and Senate Finance Committees of the Virginia General Assembly on Community-based Sickle Cell Programs - June 30, 2009


Executive Summary:
Background

During the 2007 General Assembly Session, $100,000.00 was allocated to Virginia Department of Health (VDH) to provide service grants to community-based programs for education and family-centered support for individuals, and families, with a diagnosis of sickle cell disease. The service grants expectation was to support local community activities that would enable individuals and families living with sickle cell disease to develop the necessary skills and resources to improve their health status, family functioning, and self-sufficiency.

Item 297(S) of the Appropriation Act requires that VDH develop criteria for distributing these funds, including specific goals and outcome measures and submit an annual report detailing program outcomes to the House Appropriations and Senate Finance Committees of the Virginia General Assembly.

Program Administration Narrative

VDH monitors all contracts through a combination of program site visits, telephone calls, written communication, review of quarterly progress reports, billing activities and program development opportunities.

• Contracts with three community-based programs were renewed on July I, 2008 and continued until December, 2008.

• General goals and objectives established in the previous year were continued by most programs. Adjustments to the work plans reflected awareness that many of the services offered by the programs were not being utilized by clients. Programs were encouraged to partner with other organizations targeting similar populations to enhance their educational outreach capabilities.

• The Organization for Sickle Cell Anemia Resources (OSCAR) sent an e-mail to VDH stating that it did not have the capacity to fulfill its contract to provide community-based services and did not wish to renew the contract. That request was later rescinded when OSCAR merged with another Richmond based program. A renewal application was submitted, and approved, under the name Sickle Cell Association of Richmond. VDH received two complaints (phone and e-mail) from a parent indicating that OSCAR was not holding open meetings and not responding to calls and requests for information. These concerns were addressed with both the parent and the program leadership. Open meeting were initiated in October and November.

The following activities were conducted by VDH to enhance community-based program development. (See Attachment 1 for Table of Program Activities)

• Pursued opportunities to fund sites in the Lynchburg, Roanoke, and Charlottesville areas through active solicitation with established Statewide Sickle Cell Chapters. The Sickle Cell Association of Central Virginia (Lynchburg) stated it did not have the capacity to provide services and did not wish to apply. Carilion Medical Center in Roanoke was requested to consider submitting a proposal, but did not submit a proposal.

• In collaboration with contractors, a set of posters and educational bookmarks that could be used across the Commonwealth to advertise community-based sickle cell program services was developed and disseminated.

• A nationally recognized sickle cell awareness media campaign was distributed to all Sickle Cell Chapters for use in their communities.

• Assisted in the overall coordination and evaluation of a Statewide Sickle Cell Chapters Conference, held in Richmond in September 2008. The conference attracted 101 participants from across the Commonwealth and was given an overall rating of excellent-very good by 49 participants completing the evaluation form.

• Joseph Telfair, DrPH, MSW, MPH, Professor, Public Health Research and Practice, Department of Public Health Education, School of Health and Human Performance, University of North Carolina at Greensboro conducted an in-depth training on writing successful grant applications in September, 2008. Participation was mandatory for all funded community-based sickle cell programs.

• Completed an analysis of the Community-based Program (CBP) Client Needs Assessment Tool. December, 2008. (See Attachment 2 for a copy of that report)