STAND. COM. REP. SCR2304

Honolulu, Hawaii

, 2004

RE: S.B. No. 2621

S.D. 1

 

 

Honorable Robert Bunda

President of the Senate

Twenty-Second State Legislature

Regular Session of 2004

State of Hawaii

Sir:

Your Committee on Human Services, to which was referred S.B. No. 2621 entitled:

"A BILL FOR AN ACT RELATING TO MEDICALLY FRAGILE CHILDREN'S TRUST FUND,"

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.

Testimony in support of this measure was submitted by the State Council on Developmental Disabilities (supports intent), Kapiolani Medical Center, Hawaii Disability Rights Center, and two private citizens. The Department of Budget and Finance submitted comments.

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 face limited health plans or other programs that are unable to fund certain items consistently or even at all. For example, homes often need to be adapted with new wiring, widened doorways, and ramps in order to accommodate certain equipment. Often what we take for granted requires special equipment and strategies to manage daily activities of life. This measure will provide some relief to families already burdened both financially and emotionally as a result of the necessity of caring for a medically fragile child.

Upon further consideration, your Committee has amended this bill by:

(1) Replacing the administrator of the trust fund with a community foundation;

(2) Establishing an advisory committee for the trust fund;

(3) Limiting expenses from the trust fund to those not covered by health insurance; and

(4) Making technical, nonsubstantive amendments for the purposes of style and clarity.

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

Respectfully submitted on behalf of the members of the Committee on Human Services,

____________________________

SUZANNE CHUN OAKLAND, Chair