Pennsylvania Act 2014-130 — DOWN SYNDROME PRENATAL AND POSTNATAL EDUCATION ACT - ENACTMENT

Act text

An Act

Requiring certain health care practitioners to disseminate information relating to Down syndrome; and imposing duties on the Department of Health.

The General Assembly of the Commonwealth of Pennsylvania hereby enacts as follows:

Section 1. Short title.

This act shall be known and may be cited as the Down Syndrome Prenatal and Postnatal Education Act.

Section 2. Definitions.

The following words and phrases when used in this act shall have the meanings given to them in this section unless the context clearly indicates otherwise:

"Department." The Department of Health of the Commonwealth.

"Down syndrome." A chromosomal condition caused by an error in cell division that results in the presence of an extra or partial copy of chromosome 21.

"Health care practitioner." A person who is licensed, certified or otherwise authorized by law or regulation to provide or render health care services or genetic counseling to expectant or new parents.

Section 3. Dissemination of information on Down syndrome.

(a) Requirement.--A health care practitioner that administers or causes to be administered a test for Down syndrome to an expectant or new parent shall, upon receiving a test result that is positive for Down syndrome, provide the expectant or new parent with educational information made available by the department under section 4.

(b) Compliance.--Delivery of information prepared by the department in accordance with section 4 at the time genetic results or diagnostic conclusions are provided shall constitute compliance with this section.

Section 4. Informational publications by department.

(a) General rule.--The department shall make the following available to health care practitioners on the department's publicly accessible Internet website:

(1) Up-to-date, evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations. The information provided shall include the following:

(i) Physical, developmental, educational and psychosocial outcomes.

(ii) Life expectancy.

(iii) Clinical course.

(iv) Intellectual and functional development.

(v) Treatment options.

(vi) Any other information the department deems necessary.

(2) Contact information regarding First Call programs and support services, including the following:

(i) Information hotlines specific to Down syndrome.

(ii) Relevant resource centers or clearinghouses.

(iii) National and local Down syndrome organizations.

(iv) Education and support programs.

(b) Form.--The information provided in accordance with this act shall conform to the applicable standard or standards provided in the Enhanced National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care as adopted by the United States Department of Health and Human Services and published in the Federal Register on September 24, 2013.

Section 5. Effective date.

This act shall take effect in 60 days.