Virginia Law

A. Mission. The Pediatric Comprehensive Sickle Cell Clinic Network promotes the optimal health and development of children and youth living in the Commonwealth with sickle cell disease by working in partnership with families, service providers, community-based sickle cell programs and the Virginia Sickle Cell Awareness Program.

B. Scope of services. The Pediatric Comprehensive Sickle Cell Clinic Network provides the following direct health care services and enabling services:

1. Multidisciplinary evaluation and treatment from a team of professionals that may include physician, nurse, social worker, and educational consultant.

2. Assistance in tracking newborns identified with sickle cell disease to ensure confirmation of newborn screening results and early access to care.

3. Assistance in accessing comprehensive care and a medical home.

4. Educational genetic counseling and diagnostic family studies to insure the accurate diagnosis of sickle cell disease.

5. Parent and client education across the life span.

6. Collaboration with primary care providers.

7. Information and referral to community-based sickle cell support programs.

8. Collaboration with the Virginia Department of Education and its Education in Hospitals Program to provide consultation for families, educators and school administrators.

9. Transition from child to adult oriented health care system.

10. Family-to-family support.

11. Training and technical assistance for community providers.

12. Collection of surveillance data to insure clients are receiving services consistent with their level of risk.

C. Criteria to receive services from the Pediatric Comprehensive Sickle Cell Clinic Network. Children and youth are eligible to receive services from the Pediatric Comprehensive Sickle Cell Clinic Network if they are:

1. Residents of the Commonwealth.

2. Between the ages of birth and their twenty-first birthday.

3. Diagnosed with sickle cell disease.

No financial eligibility criteria are required for clients to receive the enabling services. However, clients receiving direct health care services who meet the above criteria must also meet the financial requirements based on a sliding scale charge schedule of the major medical center.

D. Goals. The Title V national performance measures, as required by the federal Government Performance and Results Act (GPRA-Pub. L. 103-62), are used to establish the program goals. The following goals shall change as needed to be consistent with the Title V national performance measures:

1. Families of children with sickle cell anemia will partner in decision making at all levels and will be satisfied with the services they receive.

2. All children with sickle cell anemia will receive coordinated, ongoing, comprehensive care within a medical home.

3. All families of children with sickle cell anemia will have adequate private or public insurance or both to pay for the services they need.

4. Community-based service systems will be organized so families can use them easily.

5. All youth with sickle cell anemia will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.