Agencies | Governor
Virginia Regulatory Town Hall

Proposed Text

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Action:
Promulgate regulations to implement an adult comprehensive ...
Stage: Fast-Track
 
12VAC5-191-40 Scope and content of the Children with Special Health Care Needs Program

A. Mission. The Children with Special Health Care Needs Program promotes the optimal health and development of individuals living in the Commonwealth with special health care needs by working in partnership with families, service providers, and communities.

B. Scope. The scope of the Children with Special Health Care Needs Program includes the following:

1. Direct health care services.

2. Enabling services.

3. Population-based services.

4. Assessment of community health status and available resources.

5. Policy development to support and encourage better health.

C. Networks and Services. The Children with Special Health Care Needs Program administers the following networks and services:

1. Care Connection for Children.

2. Child Development Services.

3. Virginia Bleeding Disorders Program.

4. Genetics and Newborn Screening Services.

a. Virginia Newborn Screening System.

b. Virginia Congenital Anomalies Reporting and Education System.

5. Virginia Sickle Cell Awareness Program.

6. Pediatric Comprehensive Sickle Cell Clinic Network.

7. Adult Comprehensive Sickle Cell Clinic Network.

D. Target population. The target population to receive services from the networks and programs within the Children with Special Health Care Needs Program are the following:

1. Residents of the Commonwealth.

2. Individuals between the ages of birth and their twenty-first 21st birthday except that the Virginia Bleeding Disorders Program and the Virginia Sickle Cell Awareness Program serve individuals of all ages, and the Adult Comprehensive Sickle Cell Clinic Network serves individuals 18 years of age and older.

3. Individuals diagnosed as having, or are at increased risk for having, a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.

Each network and program within the CSHCN Program has its own specific eligibility criteria.

E. 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.

12VAC5-191-330 Description of the Adult Comprehensive Sickle Cell Clinic Network

The Adult Comprehensive Sickle Cell Clinic Network is a statewide group of clinics and subspecialty providers that provide comprehensive medical and support services that are collaborative, family centered, culturally competent, community based, and outcome oriented for individuals 18 years of age and older living with sickle cell disease.

12VAC5-191-340 Scope and Content of the Adult Comprehensive Sickle Cell Clinic Network

A. Mission. The Adult Comprehensive Sickle Cell Clinic Network delivers accessible services to provide access to specialty care and promotes the optimal health of adults living in the Commonwealth with sickle cell disease by working in partnership with individuals, families, service providers, community-based sickle cell programs, and the Virginia Sickle Cell Awareness Program.

B. Scope. The Adult 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, which may include a physician, nurse, social worker, community health worker, or patient navigator.

2. Partnering with pediatric sickle cell providers to help facilitate and coordinate the transition of adolescents and young adults with sickle cell disease from pediatric to adult care and services.

3. Assistance in linking patients with primary care practitioners, a medical home, and subspecialists.

4. Educational genetic counseling to explain the inheritance pattern of the variants of sickle cell disease and diagnostic studies to ensure the accurate diagnosis of sickle cell disease.

5. Patient and family education related to all aspects of the diagnosis consistent with cultural and language needs.

6. Collaborative care between primary and subspecialty care providers.

7. Information, referral, and partnership with community-based sickle cell support programs.

8. Promotion of peer or family support that may include postsecondary education and vocational assistance.

9. Training and technical assistance to educate community and health care providers about best practices and evidence-informed standards of care for individuals with sickle cell disease.

10. Collection of surveillance data to monitor incidence, prevalence, demographics, morbidity, mortality, health care utilization, and costs in order to identify disease burden in the Commonwealth.

C. Criteria to receive services from the Adult Comprehensive Sickle Cell Clinic Network. Individuals are eligible to receive services from the Adult Comprehensive Sickle Cell Clinic Network if they are:

1. Residents of the Commonwealth.

2. 18 years of age and older.

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 criteria in this subsection must also meet the financial requirements based on a sliding scale charge schedule of the providers.

D. Goals. The Title V national performance measures, National Institutes of Health and American Society of Hematology standards are used to establish the following program goals:

1. Individuals and families with sickle cell disease will partner in decision making at all levels and will be satisfied with the services they receive.

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

3. All individuals with sickle cell disease will have adequate private or public insurance or both to pay for the services they need.

4. Community-based services will be organized so individuals and families can use them easily.

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

6. All adults with sickle cell disease will receive proper health maintenance care, management of complications, and chronic pain management.