SB0345 EngrossedLRB099 03283 RLC 23291 b

1    AN ACT concerning health.
 
2    Be it enacted by the People of the State of Illinois,
3represented in the General Assembly:
 
4    Section 1. Short title. This Act may be cited as the Autism
5and Co-Occurring Medical Conditions Awareness Act.
 
6    Section 5. Findings. The General Assembly finds the
7following:
8        (1) The medical consensus is that autism is an
9    idiopathic disorder that has complex and multiple
10    etiologies. The development of autism appears to be a
11    complex interaction of multiple genetic and environmental
12    factors. Both the prevalence and incidence of autism has
13    risen in recent decades.
14        (2) The Centers for Disease Control estimates that one
15    in 68 children born in 2002 and one in 42 boys have been
16    identified as living with autism.
17        (3) A 2012 survey conducted by the Centers for Disease
18    Control of U.S. households estimated one in 50 children
19    ages 6 to 17 has an autism spectrum disorder.
20        (4) Autism spectrum disorders occur among all racial,
21    ethnic, and socioeconomic groups.
22        (5) Autism spectrum disorders are almost 5 times more
23    common among boys than among girls.

 

 

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1        (6) According to the Centers for Disease Control,
2    autism rates increased 78% between 2002 and 2008. The most
3    recent estimate is roughly 30% higher than the estimate for
4    2008 (one in 88), 60% higher than the estimate for 2006
5    (one in 110), and 120% higher than the estimates for 2000
6    and 2002 (one in 150).
7        (7) While autism spectrum disorders have primarily
8    been diagnosed in measuring deficits in the areas of
9    communication, socialization, and behavior, recent
10    clinical and scientific investigations have determined
11    that co-occurring pathophysiological conditions may occur
12    more commonly in persons also diagnosed with autism. These
13    pathologies include, but are not limited to, allergies,
14    autoimmune conditions, gastrointestinal diseases, immune
15    dysregulation, metabolic disturbances, mitochondrial
16    abnormalities, oxidative stress, neuroinflammation, and
17    seizure disorders.
18        (8) Scientific inquiry is providing evidence of
19    biological markers, including, but not limited to, single
20    nucleotide polymorphisms, indications of cellular
21    inflammation, increased cellular oxidation and damage, and
22    abnormal DNA methylation, that may be clinically
23    significant in the provision of appropriate medical care
24    for persons also diagnosed with an autism spectrum
25    disorder.
26    Therefore, it is the intention of the General Assembly to

 

 

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1promote a greater awareness and the detection, diagnosis, and
2treatment of underlying and co-occurring medical conditions
3that occur more commonly in persons with autism to further
4awareness, scientific understanding, and health outcomes for
5persons living with autism.
 
6    Section 10. Definitions. In this Act:
7    "Autism spectrum disorder" means a neurobiological
8disorder, including autism, regressive autism, Asperger
9Syndrome, and pervasive developmental disorders not otherwise
10specified.
11    "Clinical symptomatology" means any indication of disorder
12or disease when experienced by an individual as a change from
13normal function, sensation, or appearance.
14    "Co-occurring or otherwise diagnosed medical condition"
15means a simultaneous illness, condition, injury, disease,
16pathology, or disability that is not primarily diagnosed as an
17autism spectrum disorder.
18    "Department" means the Department of Financial and
19Professional Regulation.
20    "Pathophysiological" means the functional alterations in
21the body related to a disease or syndrome.
22    "Provider" means any provider of healthcare services in
23this State.
 
24    Section 15. Study and education. Public partnerships and

 

 

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1private partnerships supporting the discovery of biomarkers
2and their implications in pathophysiological conditions shall
3be encouraged and information derived from such discoveries
4shall be disseminated to providers and made available to the
5general public through research initiatives that may be
6promoted by universities, medical clinics, health care
7providers, consortiums, State agencies, private organizations,
8public organizations, and any party that may contribute to the
9scientific understanding of medical conditions associated or
10occurring more often in persons also diagnosed with an autism
11spectrum disorder than in the general population.
12    Universities, private organizations, public organizations,
13and associations are encouraged to develop for providers who
14treat persons with autism spectrum disorders continuing
15education courses which address training in evaluation,
16diagnosis, and treatments for co-occurring and otherwise
17diagnosed pathophysiological conditions in autism spectrum
18disorders to promote and align standard of care practices to
19reflect emerging clinical findings and promising practices
20derived from improved patient outcomes.
 
21    Section 20. Treatment or service of persons with an autism
22spectrum disorder. Providers are strongly encouraged to
23evaluate persons diagnosed with an autism spectrum disorder for
24co-occurring or otherwise diagnosed medical conditions when
25clinical symptomatology is present or suspected and prescribe

 

 

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1appropriate treatments or services in alignment with care
2practices for the condition, illness, injury, disease, or
3disability. Providers may consider, without limitation,
4whether or not a medication or any ingredient, allergen,
5potential toxicant, or artificial agent may exacerbate
6clinical symptomatology of autism spectrum disorder or a
7related or co-occurring or otherwise diagnosed medical
8condition and, if so, may consider adopting measures that would
9result in the reduction or elimination of risk to the patient.
 
10    Section 25. Complaints. Any person with an autism spectrum
11disorder, or the person's parent or legal guardian on his or
12her behalf, who believes they have not received an appropriate
13medical assessment, evaluation, diagnosis, service or
14treatment from a provider because he or she is also diagnosed
15with an autism spectrum disorder may report the incident to the
16Department.
 
17    Section 30. Right to seek new care. A person with an autism
18spectrum disorder, or the person's parent or legal guardian on
19his or her behalf, retains the right to seek further medical
20opinions or care from other providers.
21    A parent or legal guardian shall not be threatened with
22loss of parental or legal guardianship rights for a person with
23autism spectrum disorder for pursuing additional medical
24expertise, especially in the case of trying to ascertain

 

 

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1appropriate identification and diagnosis of underlying or
2co-occurring medical conditions that may or may not be
3exacerbating symptoms primarily associated with an autism
4spectrum disorder. This Section does not abrogate or restrict
5any responsibilities set forth under the Abused and Neglected
6Child Reporting Act.
7    Any person diagnosed as having an autism spectrum disorder
8or his or her parent or legal guardian shall not be denied the
9right to pursue appropriate and available medical
10interventions or treatments that may help to ameliorate or
11improve the symptoms primarily associated with an autism
12spectrum disorder or co-occurring or otherwise diagnosed
13medical condition.
14    Any person diagnosed as having an autism spectrum disorder
15or his or her parent or legal guardian shall not be denied the
16right to decline a medical treatment or intervention.
 
17    Section 35. Repeal. In order to consider the most
18innovative medical study and research involving autism and
19co-occurring medical conditions, this Act is repealed 5 years
20after the effective date of this Act.
 
21    Section 90. The Illinois Insurance Code is amended by
22changing Section 356z.14 and by adding Section 356z.24 as
23follows:
 

 

 

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1    (215 ILCS 5/356z.14)
2    Sec. 356z.14. Autism spectrum disorders.
3    (a) A group or individual policy of accident and health
4insurance or managed care plan amended, delivered, issued, or
5renewed after the effective date of this amendatory Act of the
695th General Assembly must provide individuals under 21 years
7of age coverage for the diagnosis of autism spectrum disorders
8and for the treatment of autism spectrum disorders to the
9extent that the diagnosis and treatment of autism spectrum
10disorders are not already covered by the policy of accident and
11health insurance or managed care plan.
12    (b) Coverage provided under this Section shall be subject
13to a maximum benefit of $36,000 per year, but shall not be
14subject to any limits on the number of visits to a service
15provider. After December 30, 2009, the Director of the Division
16of Insurance shall, on an annual basis, adjust the maximum
17benefit for inflation using the Medical Care Component of the
18United States Department of Labor Consumer Price Index for All
19Urban Consumers. Payments made by an insurer on behalf of a
20covered individual for any care, treatment, intervention,
21service, or item, the provision of which was for the treatment
22of a health condition not diagnosed as an autism spectrum
23disorder, shall not be applied toward any maximum benefit
24established under this subsection.
25    (c) Coverage under this Section shall be subject to
26copayment, deductible, and coinsurance provisions of a policy

 

 

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1of accident and health insurance or managed care plan to the
2extent that other medical services covered by the policy of
3accident and health insurance or managed care plan are subject
4to these provisions.
5    (d) This Section shall not be construed as limiting
6benefits that are otherwise available to an individual under a
7policy of accident and health insurance or managed care plan
8and benefits provided under this Section may not be subject to
9dollar limits, deductibles, copayments, or coinsurance
10provisions that are less favorable to the insured than the
11dollar limits, deductibles, or coinsurance provisions that
12apply to physical illness generally.
13    (e) An insurer may not deny or refuse to provide otherwise
14covered services, or refuse to renew, refuse to reissue, or
15otherwise terminate or restrict coverage under an individual
16contract to provide services to an individual because the
17individual or their dependent is diagnosed with an autism
18spectrum disorder or due to the individual utilizing benefits
19in this Section.
20    (f) Upon request of the reimbursing insurer, a provider of
21treatment for autism spectrum disorders shall furnish medical
22records, clinical notes, or other necessary data that
23substantiate that initial or continued medical treatment is
24medically necessary and is resulting in improved clinical
25status. When treatment is anticipated to require continued
26services to achieve demonstrable progress, the insurer may

 

 

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1request a treatment plan consisting of diagnosis, proposed
2treatment by type, frequency, anticipated duration of
3treatment, the anticipated outcomes stated as goals, and the
4frequency by which the treatment plan will be updated.
5    (g) When making a determination of medical necessity for a
6treatment modality for autism spectrum disorders, an insurer
7must make the determination in a manner that is consistent with
8the manner used to make that determination with respect to
9other diseases or illnesses covered under the policy, including
10an appeals process. During the appeals process, any challenge
11to medical necessity must be viewed as reasonable only if the
12review includes a physician with expertise in the most current
13and effective treatment modalities for autism spectrum
14disorders.
15    (h) Coverage for medically necessary early intervention
16services must be delivered by certified early intervention
17specialists, as defined in 89 Ill. Admin. Code 500 and any
18subsequent amendments thereto.
19    (h-5) If an individual has been diagnosed as having an
20autism spectrum disorder, meeting the diagnostic criteria in
21place at the time of diagnosis, and treatment is determined
22medically necessary, then that individual shall remain
23eligible for coverage under this Section even if subsequent
24changes to the diagnostic criteria are adopted by the American
25Psychiatric Association. If no changes to the diagnostic
26criteria are adopted after April 1, 2012, and before December

 

 

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131, 2014, then this subsection (h-5) shall be of no further
2force and effect.
3    (h-10) An insurer may not deny or refuse to provide covered
4services, or refuse to renew, refuse to reissue, or otherwise
5terminate or restrict coverage under an individual contract,
6for a person diagnosed with an autism spectrum disorder on the
7basis that the individual declined an alternative medication or
8covered service when the individual's health care provider has
9determined that such medication or covered service may
10exacerbate clinical symptomatology and is medically
11contraindicated for the individual and the individual has
12requested and received a medical exception as provided for
13under Section 45.1 of the Managed Care Reform and Patient
14Rights Act. For the purposes of this subsection (h-10),
15"clinical symptomatology" means any indication of disorder or
16disease when experienced by an individual as a change from
17normal function, sensation, or appearance.
18    (h-15) If, at any time, the Secretary of the United States
19Department of Health and Human Services, or its successor
20agency, promulgates rules or regulations to be published in the
21Federal Register or publishes a comment in the Federal Register
22or issues an opinion, guidance, or other action that would
23require the State, pursuant to any provision of the Patient
24Protection and Affordable Care Act (Public Law 111–148),
25including, but not limited to, 42 U.S.C. 18031(d)(3)(B) or any
26successor provision, to defray the cost of any coverage

 

 

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1outlined in subsection (h-10), then subsection (h-10) is
2inoperative with respect to all coverage outlined in subsection
3(h-10) other than that authorized under Section 1902 of the
4Social Security Act, 42 U.S.C. 1396a, and the State shall not
5assume any obligation for the cost of the coverage set forth in
6subsection (h-10).
7    (i) As used in this Section:
8    "Autism spectrum disorders" means pervasive developmental
9disorders as defined in the most recent edition of the
10Diagnostic and Statistical Manual of Mental Disorders,
11including autism, Asperger's disorder, and pervasive
12developmental disorder not otherwise specified.
13    "Diagnosis of autism spectrum disorders" means one or more
14tests, evaluations, or assessments to diagnose whether an
15individual has autism spectrum disorder that is prescribed,
16performed, or ordered by (A) a physician licensed to practice
17medicine in all its branches or (B) a licensed clinical
18psychologist with expertise in diagnosing autism spectrum
19disorders.
20    "Medically necessary" means any care, treatment,
21intervention, service or item which will or is reasonably
22expected to do any of the following: (i) prevent the onset of
23an illness, condition, injury, disease or disability; (ii)
24reduce or ameliorate the physical, mental or developmental
25effects of an illness, condition, injury, disease or
26disability; or (iii) assist to achieve or maintain maximum

 

 

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1functional activity in performing daily activities.
2    "Treatment for autism spectrum disorders" shall include
3the following care prescribed, provided, or ordered for an
4individual diagnosed with an autism spectrum disorder by (A) a
5physician licensed to practice medicine in all its branches or
6(B) a certified, registered, or licensed health care
7professional with expertise in treating effects of autism
8spectrum disorders when the care is determined to be medically
9necessary and ordered by a physician licensed to practice
10medicine in all its branches:
11        (1) Psychiatric care, meaning direct, consultative, or
12    diagnostic services provided by a licensed psychiatrist.
13        (2) Psychological care, meaning direct or consultative
14    services provided by a licensed psychologist.
15        (3) Habilitative or rehabilitative care, meaning
16    professional, counseling, and guidance services and
17    treatment programs, including applied behavior analysis,
18    that are intended to develop, maintain, and restore the
19    functioning of an individual. As used in this subsection
20    (i), "applied behavior analysis" means the design,
21    implementation, and evaluation of environmental
22    modifications using behavioral stimuli and consequences to
23    produce socially significant improvement in human
24    behavior, including the use of direct observation,
25    measurement, and functional analysis of the relations
26    between environment and behavior.

 

 

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1        (4) Therapeutic care, including behavioral, speech,
2    occupational, and physical therapies that provide
3    treatment in the following areas: (i) self care and
4    feeding, (ii) pragmatic, receptive, and expressive
5    language, (iii) cognitive functioning, (iv) applied
6    behavior analysis, intervention, and modification, (v)
7    motor planning, and (vi) sensory processing.
8    (j) Rulemaking authority to implement this amendatory Act
9of the 95th General Assembly, if any, is conditioned on the
10rules being adopted in accordance with all provisions of the
11Illinois Administrative Procedure Act and all rules and
12procedures of the Joint Committee on Administrative Rules; any
13purported rule not so adopted, for whatever reason, is
14unauthorized.
15(Source: P.A. 96-1000, eff. 7-2-10; 97-972, eff. 1-1-13.)
 
16    (215 ILCS 5/356z.24 new)
17    Sec. 356z.24. Immune gamma globulin therapy.
18    (a) A group or individual policy of accident and health
19insurance or managed care plan amended, delivered, issued, or
20renewed after the effective date of this amendatory Act of the
2199th General Assembly may not allow for the delay,
22discontinuation, or interruption of immune gamma globulin
23therapy for persons who are diagnosed with a primary
24immunodeficiency when prescribed as medically necessary by a
25physician licensed to practice medicine in all of its branches

 

 

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1and if provided as a covered benefit under the plan. Nothing in
2this Section shall prevent an insurer from applying appropriate
3utilization review standards to the ongoing coverage of immune
4gamma globulin therapy for persons diagnosed with a primary
5immunodeficiency by a physician licensed to practice medicine
6in all of its branches.
7    (b) Upon diagnosis of primary immunodeficiency by the
8prescribing physician, determination of an initial
9authorization for immune gamma globulin therapy shall be no
10less than 3 months. Reauthorization for immune gamma globulin
11therapy for patients with a primary immunodeficiency diagnosis
12may occur every 6 months thereafter. For patients with a
13diagnosis of primary immunodeficiency who have been receiving
14immune gamma globulin therapy for at least 2 years with
15sustained beneficial response based on the treatment notes or
16clinical narrative detailing progress to date, reauthorization
17shall be no less than 12 months unless a more frequent duration
18has been indicated by the prescribing physician.
19    (c) If, at any time, the Secretary of the United States
20Department of Health and Human Services, or its successor
21agency, promulgates rules or regulations to be published in the
22Federal Register or publishes a comment in the Federal Register
23or issues an opinion, guidance, or other action that would
24require the State, pursuant to any provision of the Patient
25Protection and Affordable Care Act (Public Law 111–148),
26including, but not limited to, 42 U.S.C. 18031(d)(3)(B) or any

 

 

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1successor provision, to defray the cost of any coverage
2outlined in subsections (a) and (b), then subsections (a) and
3(b) are inoperative with respect to all coverage outlined in
4subsections (a) and (b) other than that authorized under
5Section 1902 of the Social Security Act, 42 U.S.C. 1396a, and
6the State shall not assume any obligation for the cost of the
7coverage set forth in subsections (a) and (b).
 
8    Section 99. Effective date. This Act takes effect upon
9becoming law.