Problem

The Florida Partnership for Access to Sickle Cell Services (PASS) Program will provide enhanced sickle cell services to infants identified through the Newborn Screening Program and their families.

Goals and Objectives

Goal 1: To provide enhanced sickle cell services through a comprehensive continuum of care.
Objective 1: Increase the number of infants identified by CMS with SCD/trait, who receive services through the Florida PASS Program to 100% by the end of funding year 1 and maintain that level throughout the funding period.
Objective 2: Enroll 100% of newborns and their families eligible for the Florida PASS Program but without a medical home into primary care by the end of funding year 1 and maintain that level throughout the funding period.
Objective 3: Increase the number of infants identified by CMS with SCD/trait, who contact their local sickle cell chapter from 15% to 30% by the end of funding year 1, to 40% by the end of funding year 2 and to 50% by the end of funding year 3.

Goal 2: To enhance communication among local healthcare agencies, community-based organizations, private foundations and government agencies that will enhance sickle cell services.
Objective 1: To create the Florida PASS Program Advisory Board, a region-wide collaboration among local healthcare agencies, community-based organizations, private foundations and government agencies in June 2005. The Board will guide and evaluate the Florida PASS Program throughout the funding period.
Objective 2: Hold quarterly meetings for the Florida PASS Program Advisory Board throughout the three year funding period.

Activities / Methodology

The Florida PASS Program will provide enhanced sickle cell services to infants identified with SCD/trait and their families by: 1) Improving the current notification process. The State Title V Agency will be legally able to release the names of newborns identified with SCD/trait to JDCH since, as a hospital, it is qualified to receive confidential information. 2) Having staff who possess the necessary medical knowledge and the cultural sensitivity to handle the notification process, treatment needs, education, outreach, and counseling requirements of patients and their families. MHS houses the JCHAO accredited Sickle Cell Day Hospital and also contains a satellite office of the Sickle Cell Disease Association of Broward County. 3) Providing a Project Director who will be a Registered Nurse and who will be culturally representative of the population. In addition to managing contracts and staff, the Project Director will also help children with SCD transition into adult care. 4) Providing social workers and an RN, who will serve specific geographic areas and will conduct follow-up, and provide education, outreach, counseling and psychosocial support to patients and their families. 5) Ensuring all Florida PASS Program staff will be culturally appropriate to the immigrant population of Region VII and will be culturally sensitive to their needs. 6) Enrolling newborns identified with SCD/trait and their families without a medical home into a primary care facility.

Healthy People 2010 objectives:

(1) Related to Objective 16.23. Increase the proportion of Territories and States that have service systems for Children with Special Health Care Needs to 100 percent.
(2) Related to Objective 16.23: Increase the proportion of States and jurisdictions that have service systems for children with or at risk for chronic and disabling conditions as required by Public Law 101-239.
(3) Related to Objective 23.11 (Developmental) Increase the proportion of State and local public health agencies that meet national performance standards for essential public health services.
(4) Related to Objective 23.15 (Developmental) Increase the proportion of Federal, Tribal, State, and local jurisdictions that review and evaluate the extent to which their statutes, ordinances, and bylaws assure the delivery of essential public health services.

Coordination

The Florida PASS Program Advisory Board will guide, evaluate the Program. Members include: Title V Agency, Chris Evert Children's Hospital, Consumers, Healthy Start Coalition of Broward County, Healthy Start Coalition of Palm Beach County, Joe DiMaggio Children's Hospital, Palm Healthcare Foundation, Quantum Foundation, Sickle Cell Disease Association of America, Sickle Cell Disease Association of Broward County, Sickle Cell-Foundation 'or-Palm Beach County, and St. Mary's Hospital.

Evaluation

To evaluate the Florida PASS Program, the Project Director will provide status updates and reports at quarterly meetings to the Advisory Board. These reports will be used to consistently monitor the progress of the Program and will provide quality improvement guidance, ongoing needs assessments, and timely feedback to staff as issues are identified and course corrections are required.

Key Words

Sickle cell disease, Interagency cooperation, Collaboration, Genetic screening, Genetics education, Chronic illnesses and disabilities, Medical home, Minority groups, Newborn screening, Regional programs

Annotation

The Florida Partnership for Access to Sickle Cell Services (PASS) Program will be a model program of sickle cell disease (SCD) and sickle cell trait support services that includes notification, follow-up, extended family testing, genetic counseling, outreach, psychosocial support, and education for affected individuals and families. A Florida PASS Program Advisory Board will guide and evaluate the program. Members will include local healthcare agencies, Title V Agency, CBOs, private foundations and government agencies. A Project Director will coordinate the Program. The Florida PASS Program will provide enhanced sickle cell services to infants identified with SCD/trait and their families.

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