Sen. Don Harmon

Filed: 5/18/2016

 

 


 

 


 
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1
AMENDMENT TO SENATE BILL 345

2    AMENDMENT NO. ______. Amend Senate Bill 345 by replacing
3everything after the enacting clause with the following:
 
4    "Section 1. Short title. This Act may be cited as the
5Autism and 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.

 

 

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1        (3) A 2012 survey conducted by the Centers for Disease
2    Control of U.S. households estimated one in 50 children
3    ages 6 to 17 has an autism spectrum disorder.
4        (4) Autism spectrum disorders occur among all racial,
5    ethnic, and socioeconomic groups.
6        (5) Autism spectrum disorders are almost 5 times more
7    common among boys than among girls.
8        (6) According to the Centers for Disease Control,
9    autism rates increased 78% between 2002 and 2008. The most
10    recent estimate is roughly 30% higher than the estimate for
11    2008 (one in 88), 60% higher than the estimate for 2006
12    (one in 110), and 120% higher than the estimates for 2000
13    and 2002 (one in 150).
14        (7) While autism spectrum disorders have primarily
15    been diagnosed in measuring deficits in the areas of
16    communication, socialization, and behavior, recent
17    clinical and scientific investigations have determined
18    that co-occurring pathophysiological conditions may occur
19    more commonly in persons also diagnosed with autism. These
20    pathologies include, but are not limited to, allergies,
21    autoimmune conditions, gastrointestinal diseases, immune
22    dysregulation, metabolic disturbances, mitochondrial
23    abnormalities, oxidative stress, neuroinflammation, and
24    seizure disorders.
25        (8) Scientific inquiry is providing evidence of
26    biological markers, including, but not limited to, single

 

 

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1    nucleotide polymorphisms, indications of cellular
2    inflammation, increased cellular oxidation and damage, and
3    abnormal DNA methylation, that may be clinically
4    significant in the provision of appropriate medical care
5    for persons also diagnosed with an autism spectrum
6    disorder.
7    Therefore, it is the intention of the General Assembly to
8promote a greater awareness and the detection, diagnosis, and
9treatment of underlying and co-occurring medical conditions
10that occur more commonly in persons with autism to further
11awareness, scientific understanding, and health outcomes for
12persons living with autism.
 
13    Section 10. Definitions. In this Act:
14    "Autism spectrum disorder" means a neurobiological
15disorder, including autism, regressive autism, Asperger
16Syndrome, and pervasive developmental disorders not otherwise
17specified.
18    "Clinical symptomatology" means any indication of disorder
19or disease when experienced by an individual as a change from
20normal function, sensation, or appearance.
21    "Co-occurring or otherwise diagnosed medical condition"
22means a simultaneous illness, condition, injury, disease,
23pathology, or disability that is not primarily diagnosed as an
24autism spectrum disorder.
25    "Department" means the Department of Financial and

 

 

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1Professional Regulation.
2    "Pathophysiological" means the functional alterations in
3the body related to a disease or syndrome.
4    "Provider" means any provider of healthcare services in
5this State.
 
6    Section 15. Study and education. Public partnerships and
7private partnerships supporting the discovery of biomarkers
8and their implications in pathophysiological conditions shall
9be encouraged and information derived from such discoveries
10shall be disseminated to providers and made available to the
11general public through research initiatives that may be
12promoted by universities, medical clinics, health care
13providers, consortiums, State agencies, private organizations,
14public organizations, and any party that may contribute to the
15scientific understanding of medical conditions associated or
16occurring more often in persons also diagnosed with an autism
17spectrum disorder than in the general population.
18    Universities, private organizations, public organizations,
19and associations are encouraged to develop for providers who
20treat persons with autism spectrum disorders continuing
21education courses which address training in evaluation,
22diagnosis, and treatments for co-occurring and otherwise
23diagnosed pathophysiological conditions in autism spectrum
24disorders to promote and align standard of care practices to
25reflect emerging clinical findings and promising practices

 

 

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1derived from improved patient outcomes.
 
2    Section 20. Treatment or service of persons with an autism
3spectrum disorder. Providers are strongly encouraged to
4evaluate persons diagnosed with an autism spectrum disorder for
5co-occurring or otherwise diagnosed medical conditions when
6clinical symptomatology is present or suspected and prescribe
7appropriate treatments or services in alignment with care
8practices for the condition, illness, injury, disease, or
9disability. Providers may consider, without limitation,
10whether or not a medication or any ingredient, allergen,
11potential toxicant, or artificial agent may exacerbate
12clinical symptomatology of autism spectrum disorder or a
13related or co-occurring or otherwise diagnosed medical
14condition and, if so, may consider adopting measures that would
15result in the reduction or elimination of risk to the patient.
 
16    Section 25. Complaints. Any person with an autism spectrum
17disorder, or the person's parent or legal guardian on his or
18her behalf, who believes they have not received an appropriate
19medical assessment, evaluation, diagnosis, service or
20treatment from a provider because he or she is also diagnosed
21with an autism spectrum disorder may report the incident to the
22Department.
 
23    Section 30. Right to seek new care. A person with an autism

 

 

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1spectrum disorder, or the person's parent or legal guardian on
2his or her behalf, retains the right to seek further medical
3opinions or care from other providers.
4    A parent or legal guardian shall not be threatened with
5loss of parental or legal guardianship rights for a person with
6autism spectrum disorder for pursuing additional medical
7expertise, especially in the case of trying to ascertain
8appropriate identification and diagnosis of underlying or
9co-occurring medical conditions that may or may not be
10exacerbating symptoms primarily associated with an autism
11spectrum disorder. This Section does not abrogate or restrict
12any responsibilities set forth under the Abused and Neglected
13Child Reporting Act.
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 pursue appropriate and available medical
17interventions or treatments that may help to ameliorate or
18improve the symptoms primarily associated with an autism
19spectrum disorder or co-occurring or otherwise diagnosed
20medical condition.
21    Any person diagnosed as having an autism spectrum disorder
22or his or her parent or legal guardian shall not be denied the
23right to decline a medical treatment or intervention.
 
24    Section 35. Repeal. In order to consider the most
25innovative medical study and research involving autism and

 

 

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1co-occurring medical conditions, this Act is repealed 5 year
2after the effective date of this Act.
 
3    Section 90. The Illinois Insurance Code is amended by
4changing Section 356z.14 and by adding Section 356z.24 as
5follows:
 
6    (215 ILCS 5/356z.14)
7    Sec. 356z.14. Autism spectrum disorders.
8    (a) A group or individual policy of accident and health
9insurance or managed care plan amended, delivered, issued, or
10renewed after the effective date of this amendatory Act of the
1195th General Assembly must provide individuals under 21 years
12of age coverage for the diagnosis of autism spectrum disorders
13and for the treatment of autism spectrum disorders to the
14extent that the diagnosis and treatment of autism spectrum
15disorders are not already covered by the policy of accident and
16health insurance or managed care plan.
17    (b) Coverage provided under this Section shall be subject
18to a maximum benefit of $36,000 per year, but shall not be
19subject to any limits on the number of visits to a service
20provider. After December 30, 2009, the Director of the Division
21of Insurance shall, on an annual basis, adjust the maximum
22benefit for inflation using the Medical Care Component of the
23United States Department of Labor Consumer Price Index for All
24Urban Consumers. Payments made by an insurer on behalf of a

 

 

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1covered individual for any care, treatment, intervention,
2service, or item, the provision of which was for the treatment
3of a health condition not diagnosed as an autism spectrum
4disorder, shall not be applied toward any maximum benefit
5established under this subsection.
6    (c) Coverage under this Section shall be subject to
7copayment, deductible, and coinsurance provisions of a policy
8of accident and health insurance or managed care plan to the
9extent that other medical services covered by the policy of
10accident and health insurance or managed care plan are subject
11to these provisions.
12    (d) This Section shall not be construed as limiting
13benefits that are otherwise available to an individual under a
14policy of accident and health insurance or managed care plan
15and benefits provided under this Section may not be subject to
16dollar limits, deductibles, copayments, or coinsurance
17provisions that are less favorable to the insured than the
18dollar limits, deductibles, or coinsurance provisions that
19apply to physical illness generally.
20    (e) An insurer may not deny or refuse to provide otherwise
21covered services, or refuse to renew, refuse to reissue, or
22otherwise terminate or restrict coverage under an individual
23contract to provide services to an individual because the
24individual or their dependent is diagnosed with an autism
25spectrum disorder or due to the individual utilizing benefits
26in this Section.

 

 

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1    (f) Upon request of the reimbursing insurer, a provider of
2treatment for autism spectrum disorders shall furnish medical
3records, clinical notes, or other necessary data that
4substantiate that initial or continued medical treatment is
5medically necessary and is resulting in improved clinical
6status. When treatment is anticipated to require continued
7services to achieve demonstrable progress, the insurer may
8request a treatment plan consisting of diagnosis, proposed
9treatment by type, frequency, anticipated duration of
10treatment, the anticipated outcomes stated as goals, and the
11frequency by which the treatment plan will be updated.
12    (g) When making a determination of medical necessity for a
13treatment modality for autism spectrum disorders, an insurer
14must make the determination in a manner that is consistent with
15the manner used to make that determination with respect to
16other diseases or illnesses covered under the policy, including
17an appeals process. During the appeals process, any challenge
18to medical necessity must be viewed as reasonable only if the
19review includes a physician with expertise in the most current
20and effective treatment modalities for autism spectrum
21disorders.
22    (h) Coverage for medically necessary early intervention
23services must be delivered by certified early intervention
24specialists, as defined in 89 Ill. Admin. Code 500 and any
25subsequent amendments thereto.
26    (h-5) If an individual has been diagnosed as having an

 

 

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1autism spectrum disorder, meeting the diagnostic criteria in
2place at the time of diagnosis, and treatment is determined
3medically necessary, then that individual shall remain
4eligible for coverage under this Section even if subsequent
5changes to the diagnostic criteria are adopted by the American
6Psychiatric Association. If no changes to the diagnostic
7criteria are adopted after April 1, 2012, and before December
831, 2014, then this subsection (h-5) shall be of no further
9force and effect.
10    (h-10) An insurer may not deny or refuse to provide covered
11services, or refuse to renew, refuse to reissue, or otherwise
12terminate or restrict coverage under an individual contract,
13for a person diagnosed with an autism spectrum disorder on the
14basis that the individual declined an alternative medication or
15covered service when the individual's health care provider has
16determined that such medication or covered service may
17exacerbate clinical symptomatology and is medically
18contraindicated for the individual and the individual has
19requested and received a medical exception as provided for
20under Section 45.1 of the Managed Care Reform and Patient
21Rights Act. For the purposes of this subsection (h-10),
22"clinical symptomatology" means any indication of disorder or
23disease when experienced by an individual as a change from
24normal function, sensation, or appearance.
25    (h-15) If, at any time, the Secretary of the United States
26Department of Health and Human Services, or its successor

 

 

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1agency, promulgates rules or regulations to be published in the
2Federal Register or publishes a comment in the Federal Register
3or issues an opinion, guidance, or other action that would
4require the State, pursuant to any provision of the Patient
5Protection and Affordable Care Act (Public Law 111–148),
6including, but not limited to, 42 U.S.C. 18031(d)(3)(B) or any
7successor provision, to defray the cost of any coverage
8outlined in subsection (h-10), then subsection (h-10) is
9inoperative with respect to all coverage outlined in subsection
10(h-10) other than that authorized under Section 1902 of the
11Social Security Act, 42 U.S.C. 1396a, and the State shall not
12assume any obligation for the cost of the coverage set forth in
13subsection (h-10).
14    (i) As used in this Section:
15    "Autism spectrum disorders" means pervasive developmental
16disorders as defined in the most recent edition of the
17Diagnostic and Statistical Manual of Mental Disorders,
18including autism, Asperger's disorder, and pervasive
19developmental disorder not otherwise specified.
20    "Diagnosis of autism spectrum disorders" means one or more
21tests, evaluations, or assessments to diagnose whether an
22individual has autism spectrum disorder that is prescribed,
23performed, or ordered by (A) a physician licensed to practice
24medicine in all its branches or (B) a licensed clinical
25psychologist with expertise in diagnosing autism spectrum
26disorders.

 

 

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1    "Medically necessary" means any care, treatment,
2intervention, service or item which will or is reasonably
3expected to do any of the following: (i) prevent the onset of
4an illness, condition, injury, disease or disability; (ii)
5reduce or ameliorate the physical, mental or developmental
6effects of an illness, condition, injury, disease or
7disability; or (iii) assist to achieve or maintain maximum
8functional activity in performing daily activities.
9    "Treatment for autism spectrum disorders" shall include
10the following care prescribed, provided, or ordered for an
11individual diagnosed with an autism spectrum disorder by (A) a
12physician licensed to practice medicine in all its branches or
13(B) a certified, registered, or licensed health care
14professional with expertise in treating effects of autism
15spectrum disorders when the care is determined to be medically
16necessary and ordered by a physician licensed to practice
17medicine in all its branches:
18        (1) Psychiatric care, meaning direct, consultative, or
19    diagnostic services provided by a licensed psychiatrist.
20        (2) Psychological care, meaning direct or consultative
21    services provided by a licensed psychologist.
22        (3) Habilitative or rehabilitative care, meaning
23    professional, counseling, and guidance services and
24    treatment programs, including applied behavior analysis,
25    that are intended to develop, maintain, and restore the
26    functioning of an individual. As used in this subsection

 

 

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1    (i), "applied behavior analysis" means the design,
2    implementation, and evaluation of environmental
3    modifications using behavioral stimuli and consequences to
4    produce socially significant improvement in human
5    behavior, including the use of direct observation,
6    measurement, and functional analysis of the relations
7    between environment and behavior.
8        (4) Therapeutic care, including behavioral, speech,
9    occupational, and physical therapies that provide
10    treatment in the following areas: (i) self care and
11    feeding, (ii) pragmatic, receptive, and expressive
12    language, (iii) cognitive functioning, (iv) applied
13    behavior analysis, intervention, and modification, (v)
14    motor planning, and (vi) sensory processing.
15    (j) Rulemaking authority to implement this amendatory Act
16of the 95th General Assembly, if any, is conditioned on the
17rules being adopted in accordance with all provisions of the
18Illinois Administrative Procedure Act and all rules and
19procedures of the Joint Committee on Administrative Rules; any
20purported rule not so adopted, for whatever reason, is
21unauthorized.
22(Source: P.A. 96-1000, eff. 7-2-10; 97-972, eff. 1-1-13.)
 
23    (215 ILCS 5/356z.24 new)
24    Sec. 356z.24. Immune gamma globulin therapy.
25    (a) A group or individual policy of accident and health

 

 

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1insurance or managed care plan amended, delivered, issued, or
2renewed after the effective date of this amendatory Act of the
399th General Assembly may not allow for the delay,
4discontinuation, or interruption of immune gamma globulin
5therapy for persons who are diagnosed with a primary
6immunodeficiency when prescribed as medically necessary by a
7physician licensed to practice medicine in all of its branches
8and if provided as a covered benefit under the plan. Nothing in
9this Section shall prevent an insurer from applying appropriate
10utilization review standards to the ongoing coverage of immune
11gamma globulin therapy for persons diagnosed with a primary
12immunodeficiency by a physician licensed to practice medicine
13in all of its branches.
14    (b) Upon diagnosis of primary immunodeficiency by the
15prescribing physician, determination of an initial
16authorization for immune gamma globulin therapy shall be no
17less than 3 months. Reauthorization for immune gamma globulin
18therapy for patients with a primary immunodeficiency diagnosis
19may occur every 6 months thereafter. For patients with a
20diagnosis of primary immunodeficiency who have been receiving
21immune gamma globulin therapy for at least 2 years with
22sustained beneficial response based on the treatment notes or
23clinical narrative detailing progress to date, reauthorization
24shall be no less than 12 months unless a more frequent duration
25has been indicated by the prescribing physician.
26    (c) If, at any time, the Secretary of the United States

 

 

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1Department of Health and Human Services, or its successor
2agency, promulgates rules or regulations to be published in the
3Federal Register or publishes a comment in the Federal Register
4or issues an opinion, guidance, or other action that would
5require the State, pursuant to any provision of the Patient
6Protection and Affordable Care Act (Public Law 111–148),
7including, but not limited to, 42 U.S.C. 18031(d)(3)(B) or any
8successor provision, to defray the cost of any coverage
9outlined in subsections (a) and (b), then subsections (a) and
10(b) are inoperative with respect to all coverage outlined in
11subsections (a) and (b) other than that authorized under
12Section 1902 of the Social Security Act, 42 U.S.C. 1396a, and
13the State shall not assume any obligation for the cost of the
14coverage set forth in subsections (a) and (b).
 
15    Section 99. Effective date. This Act takes effect upon
16becoming law.".