Guidelines

Guidelines for

Arkansas Children’s Catastrophic Illness Grant Program

March 31, 2024

Background:

In 2003 the Arkansas legislature passed Act 279 creating the Arkansas Children’s Catastrophic Illness Grant Program. Senator Jeremy Hutchinson was instrumental in getting the bill approved, and Governor Mike Huckabee signed the bill into law. The act established a state income tax refund check-off to allow Arkansans to voluntarily help their fellow citizens experiencing financial challenges resulting from having a child with a serious medical condition. The act created a trust fund to offer grants to needy families and established a five-member Advisory Council to administer the funds.

A tragic event in the life of Little Rock residents Richard and Sharon Emmel led to the passing of Act 279. Their granddaughter, also named Sharon Emmel, was born in 1999 in Vietnam with a serious heart abnormality, one that could have been addressed by physicians at Arkansas Children Hospital (ACH). The Vietnamese government required a $35,000 payment to grant her permission to leave the country. Delays in raising the money prevented the potentially life-saving intervention at ACH. Baby Sharon died at 9 weeks old following a malfunction with her life support tubing. The trust fund established by Act 279 is also known as The Baby Sharon Fund.

Since 2003 the Advisory Council has met monthly and approved grants to help needy families with a child receiving care at ACH. Grant applications are handled by the Department of Social Work at ACH, which provides care to seriously sick children from all parts of Arkansas. In the monthly meetings a representative of that department presents the grant applications for the month, and the Advisory Council decides on which cases are funded and the level of their funding. Decisions rest primarily on the nature of the childhood illness, the needs of the family, and the availability of funds. There are no administrative costs incurred by the Advisory Council or the Department of Social Work at ACH, thus 100% of the funds go to needy families. Currently, the fund is supported by the income tax refund check-off, contributions from state appropriations, and private donations.

From 2003-2023 a total of $323,000 was awarded to families with children suffering unusually difficult medical issues at ACH. Examples of cases receiving funding include children with cystic fibrosis, brain injury, congenital heart disease, sickle-cell disease, cerebral palsy, and end-stage kidney disease. Typically, the children supported by Baby Sharon are medically complex with several chronic medical conditions, often requiring prolonged hospitalizations. Funding has gone to pay for housing concerns (e.g., mortgage, rent, utilities), transportation issues (e.g., auto payments, auto repair, maintenance, fuel), and family dynamics (e.g., who can stay with the sick child or with other children at home, who can continue to work, and marriage and parenting challenges). Cash disbursements are never made directly to the applicants but given directly to agencies or service providers in the name of the applicants by way of the Department of Social Work at ACH (or comparable intermediaries).

Rules and Guidelines:

The Advisory Council and the Department of Social Work at ACH have adopted various rules and guidelines in awarding grants. What follows is a listing of those rules and guidelines.

1. The patient must be under the care of a physician practicing in Arkansas. While the overwhelming majority of the cases involve Arkansas residents receiving care at an Arkansas hospital, grants can be made to out-of-state cases as long as an Arkansas physician is supervising and the treatment is unavailable in Arkansas.
2. Families may submit a maximum of two applications for assistance in a calendar year.
3. The disease must be of a catastrophic nature. While a catastrophic illness is understood to be an acute or prolonged illness usually considered to be life-threatening or with the threat of serious residual disability, the Council does weigh all factors impacting the sick child’s family in reaching its final decision for funding, i.e., an illness may have dire consequences on the family’s financial situation.
4. Valid request examples include, but not limited to: allow family to remain at bedside, maintain current transportation, prevent foreclosure/disconnection of utilities, long-term admission issues like transplant or other diagnosis needs, resources/equipment/services that would enable patient/family to fulfill a patient need or additional financial hardship, etc. Funeral expenses are not eligible for funding.
5. Only patients less than 18 years old are eligible for funding. The one exception would be individuals who have started treatment when younger but require it after reaching 18 years.
6. There is no direct contact between Council members and the parent or child throughout the award process.
7. The Council meets once each month. A social worker at ACH (or a comparable intermediary at another Arkansas hospital) presents the cases for the Council’s consideration.
8. A Council member takes minutes of the meeting. A Council member also summarizes the grants awarded and then notifies the Arkansas Department of Finance and Administration of the awards. This notification triggers the release of funds to ACH or another intermediary which is then responsible for its disbursement directly to the agency or service provider.
9. Approval requires a majority vote of the Council, i.e., at least three of the five members must be in favor.
10. The funds are not given directly to the grant applicant but only to those providing goods or services to the applicant by way of the Department of Social Work at ACH or a comparable intermediary.
11. The Council limits the grants awarded for automobile purchase or repair to not exceed $15,000 per year. The most one family can receive for automobile purchase or repair is $5,000 per year.
12. The Council aims to help as many needy families as its resources allow, while always striving to maintain a prudent reserve. It is anticipated that monthly grant totals will vary, depending on number of needy cases, availability of current funding, and prospects for continued funding.
13. The Council will meet at least once every two years to review these rules and guidelines.