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(305 ILCS 60/25) Sec. 25. Qualifying child. (a) For the purposes of this Act, a qualifying child is a person under 21 years of age who is enrolled in the medical assistance program under Article V of the Illinois Public Aid Code and is diagnosed by the child's primary physician or specialist as suffering from a serious illness, as defined in subsection (b).
(b) The Department, in consultation with interested stakeholders, shall determine the serious illnesses that render a child who is enrolled in the medical assistance program eligible for the program under this Act. Such serious illnesses 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 limit the administration of curative therapies.
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(2) End-stage lung disease, including but not limited
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| to cystic fibrosis, that results in dependence on technology, such as mechanical ventilation.
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(3) Severe neurological conditions, including, but
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| 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,
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| 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, but not limited to,
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| Trisomy 13 or 18, where the child has substantial neurocognitive disability with no expectation of long-term survival.
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(6) Congenital or acquired end-stage heart disease
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| without adequate medical or surgical treatments available.
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(7) End-stage liver disease where (i) transplant is
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| 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
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| not a viable option or (ii) transplant rejection or failure has occurred.
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(9) Metabolic or biochemical disorders, including,
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| 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
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| 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
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| limited to epidermolysis bullosa, where no suitable treatment exists.
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(12) Any other serious illness that the Department,
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| in consultation with interested stakeholders, determines to be appropriate.
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The definition of a serious illness shall not include a definitive time period due to the difficulty and challenges of prognosticating life expectancy in children.
(Source: P.A. 102-655, eff. 1-1-22.)
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