Prenatally diagnosed conditions; patient to be provided information; definitions; information clearinghouse; advisory council.

(1) As used in this section, the term:

(a) “Down syndrome” means a chromosomal disorder caused by an error in cell division which results in the presence of an extra whole or partial copy of chromosome 21.

(b) “Developmental disability” includes Down syndrome and other developmental disabilities defined by s. 393.063.

(c) “Health care provider” means a practitioner licensed or registered under chapter 458 or chapter 459 or an advanced practice registered nurse licensed under chapter 464.

(d) “Prenatally diagnosed condition” means an adverse fetal health condition identified by prenatal testing.

(e) “Prenatal test” or “prenatal testing” means a diagnostic procedure or screening procedure performed on a pregnant woman or her unborn offspring to obtain information about the offspring’s health or development.

(2) When a developmental disability is diagnosed based on the results of a prenatal test, the health care provider who ordered the prenatal test, or his or her designee, shall provide the patient with current information about the nature of the developmental disability, the accuracy of the prenatal test, and resources for obtaining relevant support services, including hotlines, resource centers, and information clearinghouses related to Down syndrome or other prenatally diagnosed developmental disabilities; support programs for parents and families; and developmental evaluation and intervention services under this part.

(3) The Department of Health shall develop and implement a comprehensive information clearinghouse to educate health care providers, inform parents, and increase public awareness regarding brain development, developmental disabilities and delays, and all services, resources, and interventions available to mitigate the effects of impaired development among children. The clearinghouse must use the term “unique abilities” as much as possible when identifying infants or children with developmental disabilities and delays. The clearinghouse must provide:

(a) Health information on conditions that may lead to impaired development of physical, learning, language, or behavioral skills.

(b) Education and information to support parents whose unborn children have been prenatally diagnosed with developmental disabilities or whose children have diagnosed or suspected developmental delays.

(c) Education and training for health care providers to recognize and respond appropriately to developmental disabilities, delays, and conditions related to disabilities or delays. Specific information approved by the advisory council shall be made available to health care providers for use in counseling parents whose unborn children have been prenatally diagnosed with developmental disabilities or whose children have diagnosed or suspected developmental delays.

(d) Promotion of public awareness of availability of supportive services, such as resource centers, educational programs, other support programs for parents and families, and developmental evaluation and intervention services.

(e) Hotlines specific to Down syndrome and other prenatally diagnosed developmental disabilities. The hotlines and the department’s clearinghouse must provide information to parents and families or other caregivers regarding the Early Steps Program under s. 391.301, the Florida Diagnostic and Learning Resources System, the Early Learning program, Healthy Start, Help Me Grow, and any other intervention programs. Information offered must include directions on how to obtain early intervention, rehabilitative, and habilitative services and devices.

(4)(a) There is established an advisory council within the Department of Health which consists of health care providers and caregivers who perform health care services for persons who have developmental disabilities, including Down syndrome and autism. This group shall consist of nine members as follows:

1. Three members appointed by the Governor;

2. Three members appointed by the President of the Senate; and

3. Three members appointed by the Speaker of the House of Representatives.

(b) The advisory council shall provide technical assistance to the Department of Health in the establishment of the information clearinghouse and give the department the benefit of the council members’ knowledge and experience relating to the needs of patients and families of patients with developmental disabilities and available support services.

(c) Members of the council shall elect a chairperson and a vice chairperson. The elected chairperson and vice chairperson shall serve in these roles until their terms of appointment on the council expire.

(d) The advisory council shall meet quarterly to review this clearinghouse of information, and may meet more often at the call of the chairperson or as determined by a majority of members.

(e) The council members shall be appointed to 4-year terms, except that, to provide for staggered terms, one initial appointee each from the Governor, the President of the Senate, and the Speaker of the House of Representatives shall be appointed to a 2-year term, one appointee each from these officials shall be appointed to a 3-year term, and the remaining initial appointees shall be appointed to 4-year terms. All subsequent appointments shall be for 4-year terms. A vacancy shall be filled for the remainder of the unexpired term in the same manner as the original appointment.

(f) Members of the council shall serve without compensation. Meetings of the council may be held in person, without reimbursement for travel expenses, or by teleconference or other electronic means.

(g) The Department of Health shall provide administrative support for the advisory council.