SF 632

1st Engrossment - 88th Legislature (2013 - 2014) Posted on 09/11/2013 03:11pm

A bill for an act
relating to health; extending expiration of an advisory board; classifying data
collected under the early hearing detection and intervention program; amending
Minnesota Statutes 2012, section 144.966, subdivisions 2, 3, 4, by adding a
subdivision.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:

Section 1.

Minnesota Statutes 2012, section 144.966, subdivision 2, is amended to read:

Subd. 2.

Newborn Hearing Screening Advisory Committee.

(a) The
commissioner of health shall establish a Newborn Hearing Screening Advisory Committee
to advise and assist the Department of Health and the Department of Education in:

(1) developing protocols and timelines for screening, rescreening, and diagnostic
audiological assessment and early medical, audiological, and educational intervention
services for children who are deaf or hard-of-hearing;

(2) designing protocols for tracking children from birth through age three that may
have passed newborn screening but are at risk for delayed or late onset of permanent
hearing loss;

(3) designing a technical assistance program to support facilities implementing the
screening program and facilities conducting rescreening and diagnostic audiological
assessment;

(4) designing implementation and evaluation of a system of follow-up and tracking;
and

(5) evaluating program outcomes to increase effectiveness and efficiency and ensure
culturally appropriate services for children with a confirmed hearing loss and their families.

(b) The commissioner of health shall appoint at least one member from each of the
following groups with no less than two of the members being deaf or hard-of-hearing:

(1) a representative from a consumer organization representing culturally deaf
persons;

(2) a parent with a child with hearing loss representing a parent organization;

(3) a consumer from an organization representing oral communication options;

(4) a consumer from an organization representing cued speech communication
options;

(5) an audiologist who has experience in evaluation and intervention of infants
and young children;

(6) a speech-language pathologist who has experience in evaluation and intervention
of infants and young children;

(7) two primary care providers who have experience in the care of infants and young
children, one of which shall be a pediatrician;

(8) a representative from the early hearing detection intervention teams;

(9) a representative from the Department of Education resource center for the deaf
and hard-of-hearing or the representative's designee;

(10) a representative of the Commission of Deaf, DeafBlind and Hard-of-Hearing
Minnesotans;

(11) a representative from the Department of Human Services Deaf and
Hard-of-Hearing Services Division;

(12) one or more of the Part C coordinators from the Department of Education, the
Department of Health, or the Department of Human Services or the department's designees;

(13) the Department of Health early hearing detection and intervention coordinators;

(14) two birth hospital representatives from one rural and one urban hospital;

(15) a pediatric geneticist;

(16) an otolaryngologist;

(17) a representative from the Newborn Screening Advisory Committee under
this subdivision; and

(18) a representative of the Department of Education regional low-incidence
facilitators.

The commissioner must complete the appointments required under this subdivision by
September 1, 2007.

(c) The Department of Health member shall chair the first meeting of the committee.
At the first meeting, the committee shall elect a chair from its membership. The committee
shall meet at the call of the chair, at least four times a year. The committee shall adopt
written bylaws to govern its activities. The Department of Health shall provide technical
and administrative support services as required by the committee. These services shall
include technical support from individuals qualified to administer infant hearing screening,
rescreening, and diagnostic audiological assessments.

Members of the committee shall receive no compensation for their service, but
shall be reimbursed as provided in section 15.059 for expenses incurred as a result of
their duties as members of the committee.

new text begin (d) By February 15, 2015, and by February 15 of the odd-numbered years after that
date, the commissioner shall report to the chairs and ranking minority members of the
legislative committees with jurisdiction over health and data privacy on the activities of
the committee that have occurred during the past two years.
new text end

deleted text begin (d) deleted text end new text begin (e) new text end This subdivision expires June 30, deleted text begin 2013 deleted text end new text begin 2019 new text end .

Sec. 2.

Minnesota Statutes 2012, section 144.966, subdivision 3, is amended to read:

Subd. 3.

Early hearing detection and intervention programs.

All hospitals
shall establish an early hearing detection and intervention (EHDI) program. Each EHDI
program shall:

(1) in advance of any hearing screening testing, provide to the newborn's or infant's
parents or parent information concerning the nature of the screening procedure, applicable
costs of the screening procedure, the potential risks and effects of hearing loss, and the
benefits of early detection and intervention;

(2) comply with parental deleted text begin consent deleted text end new text begin election as described new text end under section 144.125,
subdivision deleted text begin 3 deleted text end new text begin 4 new text end ;

(3) develop policies and procedures for screening and rescreening based on
Department of Health recommendations;

(4) provide appropriate training and monitoring of individuals responsible for
performing hearing screening tests as recommended by the Department of Health;

(5) test the newborn's hearing prior to discharge, or, if the newborn is expected to
remain in the hospital for a prolonged period, testing shall be performed prior to three
months of age or when medically feasible;

(6) develop and implement procedures for documenting the results of all hearing
screening tests;

(7) inform the newborn's or infant's parents or parent, primary care physician, and
the Department of Health according to recommendations of the Department of Health of
the results of the hearing screening test or rescreening if conducted, or if the newborn or
infant was not successfully tested. The hospital that discharges the newborn or infant to
home is responsible for the screening; and

(8) collect performance data specified by the Department of Health.

Sec. 3.

Minnesota Statutes 2012, section 144.966, subdivision 4, is amended to read:

Subd. 4.

Notification and information new text begin ; data retention and destruction new text end .

(a)
Notification to the parents or parent, primary care provider, and the Department of Health
shall occur prior to discharge or no later than ten days following the date of testing.
Notification shall include information recommended by the Department of Health new text begin and
information regarding the right of the parent or legal guardian to discontinue storage of the
test results and require destruction under paragraph (d) new text end .

(b) A physician, nurse, midwife, or other health professional attending a birth outside
a hospital or institution shall provide information, orally and in writing, as established by
the Department of Health, to parents regarding places where the parents may have their
infant's hearing screened and the importance of the screening.

(c) The professional conducting the diagnostic procedure to confirm the hearing loss
must report the results to the parents, primary care provider, and Department of Health
according to the Department of Health recommendations.

new text begin (d) The Department of Health may store hearing screening and rescreening test
results for a period of time not to exceed 18 years from the infant's date of birth.
new text end

new text begin (e) Notwithstanding paragraph (d), a parent or legal guardian may instruct the
Department of Health to discontinue storing hearing screening and rescreening test results
by providing a signed and dated form requesting destruction of the test results. The
Department of Health shall make necessary forms available on the department's Web site.
If a parent or legal guardian instructs the Department of Health to discontinue storing
hearing screening and rescreening test results, the Department of Health shall destroy the
test results within one month of receipt of the instruction or within 25 months after it
received the last test result, whichever is later.
new text end

Sec. 4.

Minnesota Statutes 2012, section 144.966, is amended by adding a subdivision
to read:

new text begin Subd. 8. new text end

new text begin Data collected. new text end

new text begin Data collected by or submitted to the Department of
Health pursuant to this section is not genetic information for purposes of section 13.386.
new text end