65-1,259. Prenatal and postnatal diagnosed conditions awareness programs. (a) The secretary of the department of health and environment may authorize and oversee certain activities, including the awarding of grants, contracts or cooperative agreements to eligible entities to:

(1) Collect, synthesize and disseminate current evidence-based information relating to Down syndrome or other prenatally or postnatally diagnosed conditions; and

(2) coordinate the provision of, and access to, new or existing supportive services for women and the spouses of such women who receive a positive diagnosis of Down syndrome or other prenatally or postnatally diagnosed conditions for their child, including, but not limited to:

(A) The establishment of a resource telephone hotline or website accessible to women and the spouses of such women who receive a positive diagnosis of Down syndrome or other prenatally or postnatally diagnosed conditions for their child;

(B) the development of outreach programs to new and expecting parents to provide them with up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational and psychosocial outcomes;

(C) the development of local peer support programs to effectively serve women and the spouses of such women who receive a positive diagnosis of Down syndrome or other prenatally or postnatally diagnosed conditions for their child;

(D) the establishment of a network of local registries of families willing to adopt newborns with Down syndrome or other prenatally or postnatally diagnosed conditions, and links to adoption agencies willing to place babies with Down syndrome or other prenatally or postnatally diagnosed conditions with families willing to adopt; and

(E) the establishment of awareness and education programs for health care providers who provide, interpret or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions to patients.

(b) A grantee under this section shall make the following available to health care providers of parents who receive a prenatal or postnatal diagnosis for their child:

(1) Up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational and psychosocial outcomes;

(2) contact information regarding support services, including information hotlines and websites specific to Down syndrome or other prenatally or postnatally diagnosed conditions, resource centers or clearinghouses, local peer support groups and other education and support programs.

(c) Information provided under this subsection shall be culturally and linguistically appropriate as needed by women and the spouses of such women who receive a positive diagnosis for Down syndrome or other prenatally or postnatally diagnosed conditions for their child, and approved by the secretary.

(d) In distributing funds under this section, the secretary shall place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations.

(e) On or before January 12, 2015, the secretary shall prepare and submit a report to the governor and the legislature on the grants, contracts and cooperative agreements made under this section and the effectiveness of the programs supported by such grants, contracts and cooperative agreements.

(f) As used in this section:

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

(2) "Eligible entity" means the state, or any political subdivision thereof, or any other entity with appropriate expertise in prenatally and postnatally diagnosed conditions, as determined by the secretary.

(3) "Health care provider" shall have the same meaning as that term is defined in K.S.A. 40-3401, and amendments thereto.

(4) "Postnatally diagnosed condition" means any health condition identified during the 12-month period beginning at birth.

(5) "Prenatally diagnosed condition" means any fetal health condition identified by prenatal genetic testing or prenatal screening procedures.

(6) "Prenatal test" means diagnostic or screening tests offered to pregnant women seeking routine prenatal care that are administered on a required or recommended basis by a health care provider based on medical history, family background, ethnic background, previous test results or other risk factors.

(7) "Secretary" means the secretary of the department of health and environment.

History: L. 2013, ch. 119, § 9; July 1.