(305 ILCS 60/5)
Sec. 5. Legislative findings. The General Assembly finds as follows:
(1) Each year, approximately 1,185 Illinois children |
| are diagnosed with a potentially life‑limiting illness. |
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(2) There are many barriers to the provision of |
| pediatric palliative services, the most significant of which include the following: (i) challenges in predicting life expectancy; (ii) the reluctance of families and professionals to acknowledge a child's incurable condition; and (iii) the lack of an appropriate, pediatric‑focused reimbursement structure leading to insufficient community‑based resources. |
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(3) It is tremendously difficult for physicians to |
| prognosticate pediatric life expectancy due to the resiliency of children. In addition, parents are rarely prepared to cease curative efforts in order to receive hospice or palliative care. Community‑based pediatric palliative services, however, keep children out of the hospital by managing many symptoms in the home setting, thereby improving childhood quality of life while maintaining budget neutrality. |
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(4) Pediatric palliative programming can, and should, |
| be administered in a cost neutral fashion. Community‑based pediatric palliative care allows for children and families to receive pain and symptom management and psychosocial support in the comfort of the home setting, thereby avoiding excess spending for emergency room visits and certain hospitals. The National Hospice and Palliative Care Organization's pediatric task force reported during 2001 that the average cost per child per year, cared for primarily at home, receiving comprehensive palliative and life prolonging services concurrently, is $16,177, significantly less than the $19,000 to $48,000 per child per year when palliative programs are not utilized. |
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(Source: P.A. 96‑1078, eff. 7‑16‑10.) |
(305 ILCS 60/25)
Sec. 25. Qualifying child.
(a) For the purposes of this Act, a qualifying child is a person under 18 years of age who is enrolled in the medical assistance program under Article V of the Illinois Public Aid Code and suffers from a potentially life‑limiting medical condition, as defined in subsection (b). A child who is enrolled in the pilot program prior to the age 18 may continue to receive services under the pilot program until the day before his or her twenty‑first birthday.
(b) The Department, in consultation with interested stakeholders, shall determine the potentially life‑limiting medical conditions that render a pediatric medical assistance recipient eligible for the pilot program under this Act. Such medical conditions shall include, but need not be limited to, the following:
(1) Cancer (i) for which there is no known effective |
| treatment, (ii) that does not respond to conventional protocol, (iii) that has progressed to an advanced stage, or (iv) where toxicities or other complications prohibit the administration of curative therapies. |
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(2) End‑stage lung disease, including but not limited |
| to cystic fibrosis, that results in dependence on technology, such as mechanical ventilation. |
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(3) Severe neurological conditions, including, but |
| not limited to, hypoxic ischemic encephalopathy, acute brain injury, brain infections and inflammatory diseases, or irreversible severe alteration of mental status, with one of the following co‑morbidities: (i) intractable seizures or (ii) brainstem failure to control breathing or other automatic physiologic functions. |
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(4) Degenerative neuromuscular conditions, including, |
| but not limited to, spinal muscular atrophy, Type I or II, or Duchenne Muscular Dystrophy, requiring technological support. |
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(5) Genetic syndromes, such as Trisomy 13 or 18, |
| where (i) it is more likely than not that the child will not live past 2 years of age or (ii) the child is severely compromised with no expectation of long‑term survival. |
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(6) Congenital or acquired end‑stage heart disease, |
| including but not limited to the following: (i) single ventricle disorders, including hypoplastic left heart syndrome; (ii) total anomalous pulmonary venous return, not suitable for curative surgical treatment; and (iii) heart muscle disorders (cardiomyopathies) without adequate medical or surgical treatments. |
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(7) End‑stage liver disease where (i) transplant is |
| not a viable option or (ii) transplant rejection or failure has occurred. |
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(8) End‑stage kidney failure where (i) transplant is |
| not a viable option or (ii) transplant rejection or failure has occurred. |
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(9) Metabolic or biochemical disorders, including, |
| but not limited to, mitochondrial disease, leukodystrophies, Tay‑Sachs disease, or Lesch‑Nyhan syndrome where (i) no suitable therapies exist or (ii) available treatments, including stem cell ("bone marrow") transplant, have failed. |
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(10) Congenital or acquired diseases of the |
| gastrointestinal system, such as "short bowel syndrome", where (i) transplant is not a viable option or (ii) transplant rejection or failure has occurred. |
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(11) Congenital skin disorders, including but not |
| limited to epidermolysis bullosa, where no suitable treatment exists. |
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The definition of a life‑limiting medical condition shall |
| not include a definitive time period due to the difficulty and challenges of prognosticating life expectancy in children. |
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(Source: P.A. 96‑1078, eff. 7‑16‑10.) |