Report Title:

Trust Fund; Medically Fragile Children; Special Needs Children

Description:

Creates the medically fragile children's trust fund that helps pay for the medically fragile child's medical and caregiver's expenses. Creates advisory board. (SD2)

THE SENATE

S.B. NO.

2621

TWENTY-SECOND LEGISLATURE, 2004

S.D. 2

STATE OF HAWAII

 


 

A BILL FOR AN ACT

 

relating to medically fragile children'S trust fund.

 

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

SECTION 1. Recent federal and state legislation has increased awareness of the rights of all people with disabilities. The passage of the Americans with Disabilities legislation, the United States Department of Education's Individuals with Disabilities Education Act, and state and federal health care reform initiatives have created a growing sensitivity to quality-of-life issues, empowerment, and the right to self-determination among individuals at all levels of disability. These trends place a larger responsibility on government to provide a means for meeting the unique needs of children with disabilities.

A medically fragile child usually has a severe disability that is potentially life threatening and has reached a state of well being that can be maintained only with continuing complex intervention that is medical/nursing, or technologic, or both, in nature.

The legislature finds that the health care needs of medically fragile children have progressively become more expensive throughout the years and may not be available to all children due to a family's financial situation. The legislature believes that this is unacceptable. All children regardless of financial situation should be afforded the proper health care services so that all children may reach their maximum rehabilitation potential and they and their families can lead happier, healthier lives.

The purpose of this Act is to create a medically fragile children's trust fund. Moneys paid into the trust fund shall be used to pay for the medically fragile child's expenses as well as the child's caregiver's expenses to ensure that the medically fragile child receives proper health care.

SECTION 2. Chapter 321, Hawaii Revised Statutes, is amended by adding two new sections to be appropriately designated and to read as follows:

"§321-   Medically fragile children's trust fund. (a) There is established in the state treasury the medically fragile children's trust fund, which shall be administered by a community foundation. All funds contributed to the trust fund, appropriated by the legislature, received from grants, donations, or the proceeds from contributions, and the interest or return on investments earned from moneys in the trust fund shall be deposited into the trust fund and shall be used for the purpose of ensuring the proper health care of medically fragile children by paying for the expenses of the medically fragile child and the child's caregiver, including reimbursing costs for respite care, vacation for caregivers, medical equipment, and supplies not covered by medical insurance.

(b) Moneys in the medically fragile children's trust fund shall be invested by the community agency that administers the trust fund, and all investment earnings shall be deposited into the trust fund.

(c) Upon termination of the medically fragile children's trust fund, all remaining unexpended and unencumbered funds shall revert to the credit of the general fund.

§321-   Medically fragile children's trust fund advisory committee. (a) There is established a medically fragile children's trust fund advisory committee to be placed with the department of health for administrative purposes. The advisory committee shall perform the following functions:

(1) Make recommendations on disbursement of moneys from the trust fund;

(2) Establish criteria for a one-time per family extraordinary expense allowance, not to exceed $5,000, to assist in such expenses as ramp installation, bathroom modification, or vehicle conversion;

(3) Determine the types of eligible costs; provided that expenditures are limited to those not covered under health care insurance;

(4) Establish criteria for expenditures for adults who remain medically fragile; and

(5) Establish criteria for expenditures for expenses for medically fragile children and for caregiver expenses.

(b) The advisory board shall consist of five members appointed pursuant to section 26-34, including one member each from the department of health, department of human services, and attorney general, who shall serve as ex-officio members, and two members of the public representing families with medically fragile children, to be nominated by the director and appointed by the governor. The two public members shall serve for a term of three years. The governor may reduce the terms of those initially appointed to provide, as nearly as can be, for the expiration of an equal number of terms at intervals of one year. A member whose term has expired may continue in office as a holdover member until a successor is elected; provided that the holdover member shall not hold office beyond the end of the second regular legislative session following the expiration of the member's term of office. Vacancies occurring before the expiration of a member's term shall be filled by election of the board. Individuals elected to fill a vacancy shall serve only for the remainder of the unexpired term.

(c) The advisory board shall elect a chairperson from among its members. Three members shall constitute a quorum, whose affirmative vote shall be necessary for all actions by the committee. If two vacancies exist at any one time, no remaining member shall resign until at least one vacancy has been filled in accordance with this section.

(d) Members shall serve without compensation, but may be reimbursed for the necessary expenses, including travel expenses, incurred in the performance of their duties."

SECTION 3. New statutory material is underscored.

SECTION 4. This Act shall take effect upon its approval.