Florida Senate - 2012                                    SB 1826
       By Senator Gardiner
       9-00771D-12                                           20121826__
    1                        A bill to be entitled                      
    2         An act relating to developmental disabilities;
    3         creating s. 383.141, F.S.; providing legislative
    4         findings; providing definitions; requiring that health
    5         care providers provide pregnant women with current
    6         information about the conditions that are tested for
    7         in a prenatal test, the accuracy of such tests, and
    8         resources for obtaining support services for such
    9         conditions, including information and support services
   10         regarding Down syndrome and other prenatally diagnosed
   11         conditions; establishing a prenatal advocacy council
   12         within the Department of Health; providing membership
   13         for the council; providing duties of the council;
   14         providing meeting times for the council; requiring the
   15         members to serve without compensation, but be
   16         reimbursed for per diem and travel expenses; requiring
   17         the department to provide administrative support;
   18         amending s. 383.14, F.S.; conforming provisions to
   19         changes made by the act; amending s. 1002.39, F.S.;
   20         requiring that each school provide information
   21         regarding the John M. McKay Scholarship Program upon
   22         the enrollment of a dependent child of a member of the
   23         United States Armed Forces; amending s. 1004.55, F.S.;
   24         requiring each regional autism center in this state to
   25         provide coordination and dissemination of local and
   26         regional information regarding available resources for
   27         services for children who have developmental
   28         disabilities, not just autism or autistic-like
   29         disabilities; revising the requirements for the
   30         centers with respect to supporting state agencies in
   31         development training; providing an effective date.
   33  Be It Enacted by the Legislature of the State of Florida:
   35         Section 1. Section 383.141, Florida Statutes, is created to
   36  read:
   37         383.141Prenatally diagnosed conditions; patient to be
   38  provided information; definitions; clearinghouse of
   39  information.—
   40         (1) The Legislature finds that pregnant women who choose to
   41  undergo prenatal screening should have access to timely and
   42  informative counseling about the conditions being tested for,
   43  the accuracy of such tests, and resources for obtaining support
   44  services for such conditions. Informed consent is a critical
   45  component for all genetic testing and prenatal screening,
   46  particularly as the results of such testing or screening and the
   47  counseling that follows may lead to the unnecessary abortion of
   48  unborn humans who have Down syndrome or other prenatally
   49  diagnosed conditions.
   50         (2) As used in this section, the term:
   51         (a) “Down syndrome” means a chromosomal disorder caused by
   52  an error in cell division which results in the presence of an
   53  extra whole or partial copy of chromosome 21.
   54         (b) “Health care provider” means a person or entity
   55  licensed, accredited, or certified by the Department of Health
   56  to perform specified health services.
   57         (c) “Prenatally diagnosed condition” means an adverse fetal
   58  health condition identified by prenatal genetic testing or
   59  indicated by prenatal screening procedures.
   60         (d) “Prenatal test” means a diagnostic procedure or
   61  screening procedure performed on a pregnant woman or her unborn
   62  offspring to obtain information about her offspring’s health or
   63  development.
   64         (3) When a prenatally diagnosed condition, including, but
   65  not limited to, Down syndrome, becomes prenatally diagnosed as a
   66  result of one or more prenatal tests, the health care provider
   67  who requested or ordered prenatal tests, or his or her designee,
   68  shall provide the patient with current information about the
   69  conditions that were tested for, the accuracy of such tests, and
   70  resources for obtaining support services for such conditions,
   71  including information hotlines specific to Down syndrome or
   72  other prenatally diagnosed conditions, resource centers, and
   73  clearinghouses for such conditions, support programs for parents
   74  and families, and developmental evaluation and intervention
   75  services under s. 391.303.
   76         (4)(a) There is established a prenatal advocacy council
   77  within the Department of Health which consists of health care
   78  providers and caregivers who perform health care services for
   79  persons who have developmental disabilities, including Down
   80  syndrome and autism. This group shall consist of nine members:
   81         1. Three members appointed by the Governor;
   82         2. Three members appointed by the President of the Senate;
   83  and
   84         3. Three members appointed by the Speaker of the House of
   85  Representatives.
   86         (b) The prenatal advocacy council shall establish a
   87  clearinghouse of information concerning providers of supportive
   88  services, information hotlines specific to Down syndrome and
   89  other prenatally diagnosed conditions, resource centers,
   90  educational programs, other support programs for parents and
   91  families, and developmental evaluation and intervention services
   92  under s. 391.303. The prenatal advocacy council shall meet
   93  quarterly to review this clearinghouse of information.
   94         (c) Members of the council shall serve without
   95  compensation, but are entitled to reimbursement for per diem and
   96  travel expenses as provided in s. 112.061.
   97         (d) The Department of Health shall provide administrative
   98  support for the prenatal advocacy council.
   99         Section 2. Subsection (1) of section 383.14, Florida
  100  Statutes, is amended to read:
  101         383.14 Screening for metabolic disorders, other hereditary
  102  and congenital disorders, and environmental risk factors.—
  103         (1) SCREENING REQUIREMENTS.—To help ensure access to the
  104  maternal and child health care system, the Department of Health
  105  shall promote the screening of all newborns born in this state
  106  Florida for metabolic, hereditary, and congenital disorders
  107  known to result in significant impairment of health or
  108  intellect, as screening programs accepted by current medical
  109  practice become available and practical in the judgment of the
  110  department. The department shall also promote the identification
  111  and screening of all newborns in this state and their families
  112  for environmental risk factors such as low income, poor
  113  education, maternal and family stress, emotional instability,
  114  substance abuse, and other high-risk conditions associated with
  115  increased risk of infant mortality and morbidity to provide
  116  early intervention, remediation, and prevention services,
  117  including, but not limited to, parent support and training
  118  programs, home visitation, and case management. Identification,
  119  perinatal screening, and intervention efforts shall begin before
  120  prior to and immediately following the birth of the child by the
  121  attending health care provider. Such efforts shall be conducted
  122  in hospitals, perinatal centers, county health departments,
  123  school health programs that provide prenatal care, and birthing
  124  centers, and reported to the Office of Vital Statistics.
  125         (a) Prenatal screening.—The department shall develop a
  126  multilevel screening process that includes a risk assessment
  127  instrument to identify women at risk for a preterm birth or
  128  other high-risk condition. The primary health care provider
  129  shall complete the risk assessment instrument and report the
  130  results to the Office of Vital Statistics so that the woman may
  131  immediately be notified and referred to appropriate health,
  132  education, and social services and other support services in
  133  accordance with s. 383.141.
  134         (b) Postnatal screening.—A risk factor analysis using the
  135  department’s designated risk assessment instrument shall also be
  136  conducted as part of the medical screening process upon the
  137  birth of a child and submitted to the department’s Office of
  138  Vital Statistics for recording and other purposes provided for
  139  in this chapter. The department’s screening process for risk
  140  assessment shall include a scoring mechanism and procedures that
  141  establish thresholds for notification, further assessment,
  142  referral, and eligibility for services by professionals or
  143  paraprofessionals consistent with the level of risk. Procedures
  144  for developing and using the screening instrument, notification,
  145  referral, and care coordination services, reporting
  146  requirements, management information, and maintenance of a
  147  computer-driven registry in the Office of Vital Statistics which
  148  ensures privacy safeguards must be consistent with the
  149  provisions and plans established under chapter 411, Pub. L. No.
  150  99-457, and this chapter. Procedures established for reporting
  151  information and maintaining a confidential registry must include
  152  a mechanism for a centralized information depository at the
  153  state and county levels. The department shall coordinate with
  154  existing risk assessment systems and information registries. The
  155  department must ensure, to the maximum extent possible, that the
  156  screening information registry is integrated with the
  157  department’s automated data systems, including the Florida On
  158  line Recipient Integrated Data Access (FLORIDA) system. Tests
  159  and screenings must be performed by the State Public Health
  160  Laboratory, in coordination with Children’s Medical Services, at
  161  such times and in such manner as is prescribed by the department
  162  after consultation with the Genetics and Newborn Screening
  163  Advisory Council and the Office of Early Learning.
  164         (c) Release of screening results.—Notwithstanding any other
  165  law to the contrary, the State Public Health Laboratory may
  166  release, directly or through the Children’s Medical Services
  167  program, the results of a newborn’s hearing and metabolic tests
  168  or screening to the newborn’s primary care physician.
  169         Section 3. Paragraph (a) of subsection (2) of section
  170  1002.39, Florida Statutes, is amended to read:
  171         1002.39 The John M. McKay Scholarships for Students with
  172  Disabilities Program.—There is established a program that is
  173  separate and distinct from the Opportunity Scholarship Program
  174  and is named the John M. McKay Scholarships for Students with
  175  Disabilities Program.
  176         (2) JOHN M. MCKAY SCHOLARSHIP ELIGIBILITY.—The parent of a
  177  student with a disability may request and receive from the state
  178  a John M. McKay Scholarship for the child to enroll in and
  179  attend a private school in accordance with this section if:
  180         (a) The student has:
  181         1. Received specialized instructional services under the
  182  Voluntary Prekindergarten Education Program pursuant to s.
  183  1002.66 during the previous school year and the student has a
  184  current individual educational plan developed by the local
  185  school board in accordance with rules of the State Board of
  186  Education for the John M. McKay Scholarships for Students with
  187  Disabilities Program or a 504 accommodation plan has been issued
  188  under s. 504 of the Rehabilitation Act of 1973;
  189         2. Spent the prior school year in attendance at a Florida
  190  public school or the Florida School for the Deaf and the Blind.
  191  For purposes of this subparagraph, prior school year in
  192  attendance means that the student was enrolled and reported by:
  193         a. A school district for funding during the preceding
  194  October and February Florida Education Finance Program surveys
  195  in kindergarten through grade 12, which includes time spent in a
  196  Department of Juvenile Justice commitment program if funded
  197  under the Florida Education Finance Program;
  198         b.  The Florida School for the Deaf and the Blind during
  199  the preceding October and February student membership surveys in
  200  kindergarten through grade 12; or
  201         c.  A school district for funding during the preceding
  202  October and February Florida Education Finance Program surveys,
  203  was at least 4 years of age when so enrolled and reported, and
  204  was eligible for services under s. 1003.21(1)(e); or
  205         3. Been enrolled and reported by a school district for
  206  funding, during the October and February Florida Education
  207  Finance Program surveys, in any of the 5 years prior to the
  208  2010-2011 fiscal year; has a current individualized educational
  209  plan developed by the district school board in accordance with
  210  rules of the State Board of Education for the John M. McKay
  211  Scholarship Program no later than June 30, 2011; and receives a
  212  first-time John M. McKay scholarship for the 2011-2012 school
  213  year. Upon request of the parent, the local school district
  214  shall complete a matrix of services as required in subparagraph
  215  (5)(b)1. for a student requesting a current individualized
  216  educational plan in accordance with the provisions of this
  217  subparagraph.
  219  However, a dependent child of a member of the United States
  220  Armed Forces who transfers to a school in this state from out of
  221  state or from a foreign country due to a parent’s permanent
  222  change of station orders is exempt from this paragraph but must
  223  meet all other eligibility requirements to participate in the
  224  program. Upon the enrollment of the dependent child of a member
  225  of the United States Armed Forces, the school shall provide
  226  information regarding this program.
  227         Section 4. Paragraphs (f) and (g) of subsection (4) of
  228  section 1004.55, Florida Statutes, are amended to read:
  229         1004.55 Regional autism centers; public record exemptions.—
  230         (4) Each center shall provide:
  231         (f) Coordination and dissemination of local and regional
  232  information regarding available resources for services for
  233  children who have with the developmental disabilities described
  234  in subsection (1).
  235         (g) Support to state agencies in the development of
  236  training for early child care providers and educators with
  237  respect to the developmental disabilities described in
  238  subsection (1).
  239         Section 5. This act shall take effect July 1, 2012.