Hawaii-2014-HB1682-Introduced

SECTION 1. The legislature finds that fetal alcohol spectrum disorder is one of the most underdiagnosed developmental disabilities in Hawaii and across the United States. The effects of prenatal alcohol exposure are lifelong, yet fetal alcohol spectrum disorder is completely preventable. The devastating effects of fetal alcohol exposure can be ameliorated through early intervention and effective systems of care and services.

Fetal alcohol exposure is a leading cause of intellectual disabilities in the United States, and the majority of those exposed do not actually exhibit intellectual delays. Individuals with diagnosed or undiagnosed fetal alcohol exposure often suffer from secondary disabilities and other areas of concern including child abuse and neglect, family separation or disjointment, multiple foster placements, school related failure, juvenile delinquency, job instability, depression, aggression, and other serious mental health disorders. These secondary concerns and intellectual disabilities come at a high cost to the individual, their families, and society. These problems can be substantially reduced, however, by early diagnosis and appropriate, effective intervention.

Fetal alcohol spectrum disorder is an umbrella term describing the range of effects that can occur as a result of an individual's mother consuming alcohol during pregnancy. These effects include physical, mental, behavioral, and learning disabilities with lifelong implications.

Nationwide, the occurrence of fetal alcohol spectrum disorder is estimated to be one per cent of live births. That means forty thousand newborns per year are affected by fetal alcohol spectrum disorder. There are more cases of fetal alcohol spectrum disorder than down syndrome, cerebral palsy, sudden infant death syndrome, cystic fibrosis, and spina bifida combined. Human costs of prenatal alcohol exposure are great, as are the economic costs. Caring for someone with fetal alcohol spectrum disorder costs between $1,400,000 and $1,500,000 over a lifetime, whereas implementing effective systems of care and services will cost a fraction of that amount.

There are currently very few fetal alcohol spectrum disorder-specific services in Hawaii, yet thousands of women in the State put their infants at risk for fetal alcohol spectrum disorder. Based on the Hawaii pregnancy risk assessment monitoring system data, approximately one thousand three hundred women who gave birth in Hawaii during the years 2009 to 2011 reported that they drank alcohol in the last trimester of their most recent pregnancy. In that same time period, approximately two hundred women per year reported binge drinking in the last trimester of their most recent pregnancy. Binge drinking for women is defined as drinking four or more alcoholic drinks in one sitting.

Hawaii pregnancy risk assessment monitoring system data also states that of those surveyed, three thousand four hundred females engaged in drinking prior to pregnancy. Pregnancy risk assessment monitoring system data finds binge drinking is estimated to increase over time, including during pregnancy. In Hawaii, women under the age of twenty-five have the highest estimates of binge drinking three months prior to pregnancy. It should be noted that pregnancy risk assessment monitoring system data does not include every woman who gives birth in Hawaii, so the prevalence of drinking during pregnancy may well be higher than reported. Because fetal alcohol spectrum disorder can occur in any community where women consume alcohol during pregnancy, it is a statewide public health concern that has service, policy, and economic implications for virtually all state departments.

Because fetal alcohol spectrum disorder is frequently underdiagnosed, and families as well as providers have significant problems in addressing the multiple and challenging needs of persons with this disorder, fourteen states already have permanent fetal alcohol spectrum disorder coordinators. These fetal alcohol spectrum disorder coordinators serve as a key educational, informational, and coordinative link between departments and agencies dealing with persons with fetal alcohol spectrum disorder.

Poor coordination hampers prevention, diagnosis, and service delivery. A fetal alcohol spectrum disorder interagency coordinating council with a fetal alcohol spectrum disorder coordinator would organize all fetal alcohol spectrum disorder related activities, and would ensure that a comprehensive state strategic plan to address fetal alcohol spectrum disorder is drafted and implemented.

The purpose of this Act is to coordinate and develop fetal alcohol spectrum disorder information, education, policies, and support services statewide by establishing a fetal alcohol spectrum disorder interagency coordinating council with a fetal alcohol spectrum disorder coordinator within the department of health's family health services division.

SECTION 2. (a) There is established within the family health services division of the department of health a fetal alcohol spectrum disorder interagency coordinating council and a fetal alcohol spectrum disorder coordinator. Members of the council shall be appointed for three-year terms by the governor and shall not be subject to section 26-34. The council shall comprise no less than fifteen members and no more than seventeen members as follows:

(1) At least three members shall be individuals with fetal alcohol spectrum disorder or immediate relatives or guardians of an individual with fetal alcohol spectrum disorder, with at least one member from a neighbor island;

(2) At least one member shall be a representative of the maternal and child health branch of the department of health;

(3) At least one member shall be a representative of the children with special health needs branch of the department of health;

(4) At least one member shall be a representative of the developmental disabilities division of the department of health;

(5) At least one member shall be a representative of the alcohol and drug abuse division of the department of health;

(6) At least one member shall be a representative of the adult mental health division of the department of health;

(7) At least one member shall be a representative of the special education section of the department of education;

(8) At least one member shall be a representative of the comprehensive student support services section of the department of education;

(9) At least one member shall be a representative of the judiciary;

(10) At least one member shall be a representative of the office of youth services of the department of human services;

(11) At least one member shall be a representative of the social services division of the department of human services involved in providing services for foster and adoptive families;

(12) At least one member shall be a representative of an agency responsible for the recruitment, training, or support of foster and adoptive families;

(13) At least one member shall be a representative of a private nonprofit group concerned with services for individuals with fetal alcohol spectrum disorder in this State; and

(14) At least one member shall be from the native hawaiian health care system;

provided that each member representing a state agency shall have the authority to influence policy in the member's respective agency.

Any vacancy on the council shall be filled in the same manner in which the original position was filled.

(b) The council shall elect its officers, and fifty per cent of the members shall constitute a quorum. Members shall serve without compensation but shall be reimbursed for authorized expenses, including travel expenses, necessary for the performance of their duties. No member shall cast a vote on any matter that is likely to provide a direct financial benefit to that member or otherwise give the appearance of a conflict of interest.

(d) For the purpose of minimizing travel and per diem expenses for parties who are not located on Oahu, the board shall utilize cost efficient means, such as teleconferencing or videoconferencing, that do not require appearances on Oahu, whenever practicable, to conduct its proceedings.

(e) The council and coordinator shall perform the following functions:

(1) Increase statewide awareness of fetal alcohol spectrum disorder in the general public and in at-risk populations;

(2) Expand the statewide capacity to identify and intervene with at-risk women who are pregnant and parenting;

(3) Advocate, mobilize, and coordinate state and community resources to assist persons and families affected by fetal alcohol spectrum disorder to receive the support they need;

(4) Improve statewide service delivery to individuals and families affected by fetal alcohol spectrum disorder;

(5) Facilitate development and implementation of a comprehensive, statewide system of care for the prevention, identification, surveillance, and treatment of fetal alcohol spectrum disorders; and

(6) Develop and implement a statewide strategic plan to address the full range of lifelong fetal alcohol spectrum disorder prevention, identification, care, treatment, and education.

SECTION 3. There is appropriated out of the general revenues of the State of Hawaii the sum of $ or so much thereof as may be necessary for fiscal year 2014-2015 to establish a fetal alcohol spectrum disorder interagency coordinating council and a permanent fetal alcohol spectrum disorder coordinator position in the family health services division of the department of health.

The sum appropriated shall be expended by the department of health for the purposes of this Act.

SECTION 4. This Act shall take effect on July 1, 2014.

INTRODUCED BY:	_____________________________

HOUSE OF REPRESENTATIVES	H.B. NO.	1682
TWENTY-SEVENTH LEGISLATURE, 2014
STATE OF HAWAII