Honorable Robert Bunda

President of the Senate

Twenty-Second State Legislature

Regular Session of 2004

State of Hawaii

Sir:

Your Committee on Ways and Means, to which was referred S.B. No. 2621, S.D. 1, entitled:

begs leave to report as follows:

The purpose of this measure is to create a medically fragile children's trust fund to help pay for a medically fragile child's expenses as well as the child's caregiver's expenses.

The measure also creates a medically fragile children's trust fund advisory committee, placed within the Department of Health for administrative purposes.

Your Committee finds that recent trends in legislation place a larger responsibility on government to provide a means for meeting the unique needs of children with disabilities. Medically fragile children are children who typically suffer from cerebral palsy, muscular dystrophy, cancer, heart and lung disease, spina bifida, and other conditions that threaten their ability to survive without proper medical care. These are children who are usually medically stable but require skilled nursing services, therapies, and equipment to sustain their lives.

On a daily basis, families with medically fragile children are faced with limited health plans or other programs that are unable to fund certain items consistently or not at all. For example, homes often need to be adapted with new wiring, widened doorways, and ramps in order to accommodate certain equipment. This measure will provide some relief to families already burdened both financially and emotionally as a result of the need to care for a medically fragile child.

Upon further consideration, your Committee has amended this measure by inserting customary language regarding the appointment of the advisory committee's members, term of office, quorum, vacancy, unexpired terms, service without compensation, and the like. Your Committee has also made several technical nonsubstantive amendments for the purpose of clarity.

As affirmed by the record of votes of the members of your Committee on Ways and Means that is attached to this report, your Committee is in accord with the intent and purpose of S.B. No. 2621, S.D. 1, as amended herein, and recommends that it pass Third Reading in the form attached hereto as S.B. No. 2621, S.D. 2.