(1) Legislative declaration. (a) The general assembly finds and declares that:
The death of a child has a devastating and enduring impact on the child's family;
Too often, children with fatal conditions and their families fail to receive compassionate and consistent care that meets their physical, emotional, and spiritual needs;
Better care is possible but current methods of organizing and financing palliative,end-of-life, and bereavement care impede the provision of services that are both more appropriate and more cost-efficient;
Current federal medicaid regulations contain inherent barriers to providing appropriate palliative and end-of-life care to pediatric patients. These barriers include requirements that preclude the pursuit of curative treatments, mandate a do-not-resuscitate order, and require physician certification that death is expected within six months.
The general assembly declares that it is in the best interest of the state to investigateand implement hospice guidelines that provide appropriate, compassionate care to dying children and their families while proving to be cost-neutral or cost-saving to the state and federal medicaid programs.
The general assembly further finds and declares that, while this direction immediately concerns federal approval for hospice care that recognizes the distinct circumstances of children facing life-threatening illnesses and their families, it is the intent of the general assembly that the information and data produced as a result of this act shall be used to improve the delivery of palliative and end-of-life services to persons of all ages when such improvements can be made in a manner that is cost-neutral or cost-saving to the state.
(2) Definitions. As used in this section, unless the context otherwise requires:
(a) "Eligible child" means a child who:
Is less than nineteen years of age; and
Is eligible for the state's medicaid program pursuant to section 25.5-5-101, 25.5-5201, or 25.5-5-203;
(b) "Pediatric hospice care" means hospice care for eligible children as authorized in this section.
(3) Pediatric hospice care. (a) (I) The state department shall seek the appropriate federal authorization, conditioned on the receipt of gifts, grants, or donations sufficient to provide for the state's administrative costs of preparing and submitting the request, for pediatric hospice care that shall include but may not be limited to:
Respite care;
Expressive therapies, as defined in rule by the state board;
Palliative care from the time of diagnosis of a potentially life-threatening illness; and
A continuum of care through the coordination of services, which may include skilled, intermittent, and around-the-clock nursing care.
(II) The state department is authorized to seek federal approval for modifications to the provision of hospice care for adults who are eligible for the state's medicaid program.
(b) For the provision of pediatric hospice care, the state department shall seek an exemption from the following federal medicaid requirements for the eligibility of and election for hospice care:
The mandatory do-not-resuscitate order;
A physician's certification that a patient is expected to live less than six months; and
The nonallowance of curative care therapies concurrent with palliative and hospicecare.
In any application for federal authorization pursuant to this section, the state department shall retain bereavement services to the extent available under federal law.
Pediatric hospice care, as authorized pursuant to this section, shall meet aggregatefederal waiver budget neutrality requirements.
The state department shall implement the provision of pediatric hospice care to theextent authorized by the federal government.
Review. The state department shall notify the joint budget committee of the general assembly of the extent to which the state department received federal authorization for pediatric hospice care services pursuant to this section in order for the joint budget committee to review the approved budget neutrality analysis for such services prior to the state department's implementation.
Rules. The state department shall develop the service provisions for pediatric hospice care in consultation with medical professionals who have expertise in providing end-oflife and palliative care to pediatric patients and family members who have experienced the death of a child. The state board shall adopt rules necessary to implement and administer the provisions of this section.
Fund. The state department is authorized to seek and accept gifts, grants, or donations from private or public sources for the purpose of providing for the administrative costs of preparing and submitting the request for federal approval for the provision of pediatric hospice care. All private and public funds received through gifts, grants, or donations shall be transmitted to the state treasurer, who shall credit the same to the pediatric hospice care cash fund, which fund is hereby created and referred to in this section as the "fund". The moneys in the fund shall be subject to annual appropriation by the general assembly for preparing and submitting the request for federal approval pursuant to this section. Any moneys in the fund not expended for the purpose of this section may be invested by the state treasurer as provided by law. All interest and income derived from the investment and deposit of moneys in the fund shall be credited to the fund. Any unexpended and unencumbered moneys remaining in the fund at the end of a fiscal year shall remain in the fund and shall not be credited or transferred or revert to the general fund or another fund.
Source: L. 2006: Entire article added with relocations, p. 1868, § 7, effective July 1.
Editor's note: This section is similar to former § 26-4-533 as it existed prior to 2006.