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Public Act 099-0788


 

Public Act 0788 99TH GENERAL ASSEMBLY



 


 
Public Act 099-0788
 
SB0345 EnrolledLRB099 03283 RLC 23291 b

    AN ACT concerning health.
 
    Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
 
    Section 1. Short title. This Act may be cited as the Autism
and Co-Occurring Medical Conditions Awareness Act.
 
    Section 5. Findings. The General Assembly finds the
following:
        (1) The medical consensus is that autism is an
    idiopathic disorder that has complex and multiple
    etiologies. The development of autism appears to be a
    complex interaction of multiple genetic and environmental
    factors. Both the prevalence and incidence of autism has
    risen in recent decades.
        (2) The Centers for Disease Control estimates that one
    in 68 children born in 2002 and one in 42 boys have been
    identified as living with autism.
        (3) A 2012 survey conducted by the Centers for Disease
    Control of U.S. households estimated one in 50 children
    ages 6 to 17 has an autism spectrum disorder.
        (4) Autism spectrum disorders occur among all racial,
    ethnic, and socioeconomic groups.
        (5) Autism spectrum disorders are almost 5 times more
    common among boys than among girls.
        (6) According to the Centers for Disease Control,
    autism rates increased 78% between 2002 and 2008. The most
    recent estimate is roughly 30% higher than the estimate for
    2008 (one in 88), 60% higher than the estimate for 2006
    (one in 110), and 120% higher than the estimates for 2000
    and 2002 (one in 150).
        (7) While autism spectrum disorders have primarily
    been diagnosed in measuring deficits in the areas of
    communication, socialization, and behavior, recent
    clinical and scientific investigations have determined
    that co-occurring pathophysiological conditions may occur
    more commonly in persons also diagnosed with autism. These
    pathologies include, but are not limited to, allergies,
    autoimmune conditions, gastrointestinal diseases, immune
    dysregulation, metabolic disturbances, mitochondrial
    abnormalities, oxidative stress, neuroinflammation, and
    seizure disorders.
        (8) Scientific inquiry is providing evidence of
    biological markers, including, but not limited to, single
    nucleotide polymorphisms, indications of cellular
    inflammation, increased cellular oxidation and damage, and
    abnormal DNA methylation, that may be clinically
    significant in the provision of appropriate medical care
    for persons also diagnosed with an autism spectrum
    disorder.
    Therefore, it is the intention of the General Assembly to
promote a greater awareness and the detection, diagnosis, and
treatment of underlying and co-occurring medical conditions
that occur more commonly in persons with autism to further
awareness, scientific understanding, and health outcomes for
persons living with autism.
 
    Section 10. Definitions. In this Act:
    "Autism spectrum disorder" means a neurobiological
disorder, including autism, regressive autism, Asperger
Syndrome, and pervasive developmental disorders not otherwise
specified.
    "Clinical symptomatology" means any indication of disorder
or disease when experienced by an individual as a change from
normal function, sensation, or appearance.
    "Co-occurring or otherwise diagnosed medical condition"
means a simultaneous illness, condition, injury, disease,
pathology, or disability that is not primarily diagnosed as an
autism spectrum disorder.
    "Department" means the Department of Financial and
Professional Regulation.
    "Pathophysiological" means the functional alterations in
the body related to a disease or syndrome.
    "Provider" means any provider of healthcare services in
this State.
 
    Section 15. Study and education. Public partnerships and
private partnerships supporting the discovery of biomarkers
and their implications in pathophysiological conditions shall
be encouraged and information derived from such discoveries
shall be disseminated to providers and made available to the
general public through research initiatives that may be
promoted by universities, medical clinics, health care
providers, consortiums, State agencies, private organizations,
public organizations, and any party that may contribute to the
scientific understanding of medical conditions associated or
occurring more often in persons also diagnosed with an autism
spectrum disorder than in the general population.
    Universities, private organizations, public organizations,
and associations are encouraged to develop for providers who
treat persons with autism spectrum disorders continuing
education courses which address training in evaluation,
diagnosis, and treatments for co-occurring and otherwise
diagnosed pathophysiological conditions in autism spectrum
disorders to promote and align standard of care practices to
reflect emerging clinical findings and promising practices
derived from improved patient outcomes.
 
    Section 20. Treatment or service of persons with an autism
spectrum disorder. Providers are strongly encouraged to
evaluate persons diagnosed with an autism spectrum disorder for
co-occurring or otherwise diagnosed medical conditions when
clinical symptomatology is present or suspected and prescribe
appropriate treatments or services in alignment with care
practices for the condition, illness, injury, disease, or
disability. Providers may consider, without limitation,
whether or not a medication or any ingredient, allergen,
potential toxicant, or artificial agent may exacerbate
clinical symptomatology of autism spectrum disorder or a
related or co-occurring or otherwise diagnosed medical
condition and, if so, may consider adopting measures that would
result in the reduction or elimination of risk to the patient.
 
    Section 25. Complaints. Any person with an autism spectrum
disorder, or the person's parent or legal guardian on his or
her behalf, who believes they have not received an appropriate
medical assessment, evaluation, diagnosis, service or
treatment from a provider because he or she is also diagnosed
with an autism spectrum disorder may report the incident to the
Department.
 
    Section 30. Right to seek new care. A person with an autism
spectrum disorder, or the person's parent or legal guardian on
his or her behalf, retains the right to seek further medical
opinions or care from other providers.
    A parent or legal guardian shall not be threatened with
loss of parental or legal guardianship rights for a person with
autism spectrum disorder for pursuing additional medical
expertise, especially in the case of trying to ascertain
appropriate identification and diagnosis of underlying or
co-occurring medical conditions that may or may not be
exacerbating symptoms primarily associated with an autism
spectrum disorder. This Section does not abrogate or restrict
any responsibilities set forth under the Abused and Neglected
Child Reporting Act.
    Any person diagnosed as having an autism spectrum disorder
or his or her parent or legal guardian shall not be denied the
right to pursue appropriate and available medical
interventions or treatments that may help to ameliorate or
improve the symptoms primarily associated with an autism
spectrum disorder or co-occurring or otherwise diagnosed
medical condition.
    Any person diagnosed as having an autism spectrum disorder
or his or her parent or legal guardian shall not be denied the
right to decline a medical treatment or intervention.
 
    Section 35. Repeal. In order to consider the most
innovative medical study and research involving autism and
co-occurring medical conditions, this Act is repealed 5 years
after the effective date of this Act.
 
    Section 90. The Illinois Insurance Code is amended by
changing Section 356z.14 and by adding Section 356z.24 as
follows:
 
    (215 ILCS 5/356z.14)
    Sec. 356z.14. Autism spectrum disorders.
    (a) A group or individual policy of accident and health
insurance or managed care plan amended, delivered, issued, or
renewed after the effective date of this amendatory Act of the
95th General Assembly must provide individuals under 21 years
of age coverage for the diagnosis of autism spectrum disorders
and for the treatment of autism spectrum disorders to the
extent that the diagnosis and treatment of autism spectrum
disorders are not already covered by the policy of accident and
health insurance or managed care plan.
    (b) Coverage provided under this Section shall be subject
to a maximum benefit of $36,000 per year, but shall not be
subject to any limits on the number of visits to a service
provider. After December 30, 2009, the Director of the Division
of Insurance shall, on an annual basis, adjust the maximum
benefit for inflation using the Medical Care Component of the
United States Department of Labor Consumer Price Index for All
Urban Consumers. Payments made by an insurer on behalf of a
covered individual for any care, treatment, intervention,
service, or item, the provision of which was for the treatment
of a health condition not diagnosed as an autism spectrum
disorder, shall not be applied toward any maximum benefit
established under this subsection.
    (c) Coverage under this Section shall be subject to
copayment, deductible, and coinsurance provisions of a policy
of accident and health insurance or managed care plan to the
extent that other medical services covered by the policy of
accident and health insurance or managed care plan are subject
to these provisions.
    (d) This Section shall not be construed as limiting
benefits that are otherwise available to an individual under a
policy of accident and health insurance or managed care plan
and benefits provided under this Section may not be subject to
dollar limits, deductibles, copayments, or coinsurance
provisions that are less favorable to the insured than the
dollar limits, deductibles, or coinsurance provisions that
apply to physical illness generally.
    (e) An insurer may not deny or refuse to provide otherwise
covered services, or refuse to renew, refuse to reissue, or
otherwise terminate or restrict coverage under an individual
contract to provide services to an individual because the
individual or their dependent is diagnosed with an autism
spectrum disorder or due to the individual utilizing benefits
in this Section.
    (f) Upon request of the reimbursing insurer, a provider of
treatment for autism spectrum disorders shall furnish medical
records, clinical notes, or other necessary data that
substantiate that initial or continued medical treatment is
medically necessary and is resulting in improved clinical
status. When treatment is anticipated to require continued
services to achieve demonstrable progress, the insurer may
request a treatment plan consisting of diagnosis, proposed
treatment by type, frequency, anticipated duration of
treatment, the anticipated outcomes stated as goals, and the
frequency by which the treatment plan will be updated.
    (g) When making a determination of medical necessity for a
treatment modality for autism spectrum disorders, an insurer
must make the determination in a manner that is consistent with
the manner used to make that determination with respect to
other diseases or illnesses covered under the policy, including
an appeals process. During the appeals process, any challenge
to medical necessity must be viewed as reasonable only if the
review includes a physician with expertise in the most current
and effective treatment modalities for autism spectrum
disorders.
    (h) Coverage for medically necessary early intervention
services must be delivered by certified early intervention
specialists, as defined in 89 Ill. Admin. Code 500 and any
subsequent amendments thereto.
    (h-5) If an individual has been diagnosed as having an
autism spectrum disorder, meeting the diagnostic criteria in
place at the time of diagnosis, and treatment is determined
medically necessary, then that individual shall remain
eligible for coverage under this Section even if subsequent
changes to the diagnostic criteria are adopted by the American
Psychiatric Association. If no changes to the diagnostic
criteria are adopted after April 1, 2012, and before December
31, 2014, then this subsection (h-5) shall be of no further
force and effect.
    (h-10) An insurer may not deny or refuse to provide covered
services, or refuse to renew, refuse to reissue, or otherwise
terminate or restrict coverage under an individual contract,
for a person diagnosed with an autism spectrum disorder on the
basis that the individual declined an alternative medication or
covered service when the individual's health care provider has
determined that such medication or covered service may
exacerbate clinical symptomatology and is medically
contraindicated for the individual and the individual has
requested and received a medical exception as provided for
under Section 45.1 of the Managed Care Reform and Patient
Rights Act. For the purposes of this subsection (h-10),
"clinical symptomatology" means any indication of disorder or
disease when experienced by an individual as a change from
normal function, sensation, or appearance.
    (h-15) If, at any time, the Secretary of the United States
Department of Health and Human Services, or its successor
agency, promulgates rules or regulations to be published in the
Federal Register or publishes a comment in the Federal Register
or issues an opinion, guidance, or other action that would
require the State, pursuant to any provision of the Patient
Protection and Affordable Care Act (Public Law 111148),
including, but not limited to, 42 U.S.C. 18031(d)(3)(B) or any
successor provision, to defray the cost of any coverage
outlined in subsection (h-10), then subsection (h-10) is
inoperative with respect to all coverage outlined in subsection
(h-10) other than that authorized under Section 1902 of the
Social Security Act, 42 U.S.C. 1396a, and the State shall not
assume any obligation for the cost of the coverage set forth in
subsection (h-10).
    (i) As used in this Section:
    "Autism spectrum disorders" means pervasive developmental
disorders as defined in the most recent edition of the
Diagnostic and Statistical Manual of Mental Disorders,
including autism, Asperger's disorder, and pervasive
developmental disorder not otherwise specified.
    "Diagnosis of autism spectrum disorders" means one or more
tests, evaluations, or assessments to diagnose whether an
individual has autism spectrum disorder that is prescribed,
performed, or ordered by (A) a physician licensed to practice
medicine in all its branches or (B) a licensed clinical
psychologist with expertise in diagnosing autism spectrum
disorders.
    "Medically necessary" means any care, treatment,
intervention, service or item which will or is reasonably
expected to do any of the following: (i) prevent the onset of
an illness, condition, injury, disease or disability; (ii)
reduce or ameliorate the physical, mental or developmental
effects of an illness, condition, injury, disease or
disability; or (iii) assist to achieve or maintain maximum
functional activity in performing daily activities.
    "Treatment for autism spectrum disorders" shall include
the following care prescribed, provided, or ordered for an
individual diagnosed with an autism spectrum disorder by (A) a
physician licensed to practice medicine in all its branches or
(B) a certified, registered, or licensed health care
professional with expertise in treating effects of autism
spectrum disorders when the care is determined to be medically
necessary and ordered by a physician licensed to practice
medicine in all its branches:
        (1) Psychiatric care, meaning direct, consultative, or
    diagnostic services provided by a licensed psychiatrist.
        (2) Psychological care, meaning direct or consultative
    services provided by a licensed psychologist.
        (3) Habilitative or rehabilitative care, meaning
    professional, counseling, and guidance services and
    treatment programs, including applied behavior analysis,
    that are intended to develop, maintain, and restore the
    functioning of an individual. As used in this subsection
    (i), "applied behavior analysis" means the design,
    implementation, and evaluation of environmental
    modifications using behavioral stimuli and consequences to
    produce socially significant improvement in human
    behavior, including the use of direct observation,
    measurement, and functional analysis of the relations
    between environment and behavior.
        (4) Therapeutic care, including behavioral, speech,
    occupational, and physical therapies that provide
    treatment in the following areas: (i) self care and
    feeding, (ii) pragmatic, receptive, and expressive
    language, (iii) cognitive functioning, (iv) applied
    behavior analysis, intervention, and modification, (v)
    motor planning, and (vi) sensory processing.
    (j) Rulemaking authority to implement this amendatory Act
of the 95th General Assembly, if any, is conditioned on the
rules being adopted in accordance with all provisions of the
Illinois Administrative Procedure Act and all rules and
procedures of the Joint Committee on Administrative Rules; any
purported rule not so adopted, for whatever reason, is
unauthorized.
(Source: P.A. 96-1000, eff. 7-2-10; 97-972, eff. 1-1-13.)
 
    (215 ILCS 5/356z.24 new)
    Sec. 356z.24. Immune gamma globulin therapy.
    (a) A group or individual policy of accident and health
insurance or managed care plan amended, delivered, issued, or
renewed after the effective date of this amendatory Act of the
99th General Assembly may not allow for the delay,
discontinuation, or interruption of immune gamma globulin
therapy for persons who are diagnosed with a primary
immunodeficiency when prescribed as medically necessary by a
physician licensed to practice medicine in all of its branches
and if provided as a covered benefit under the plan. Nothing in
this Section shall prevent an insurer from applying appropriate
utilization review standards to the ongoing coverage of immune
gamma globulin therapy for persons diagnosed with a primary
immunodeficiency by a physician licensed to practice medicine
in all of its branches.
    (b) Upon diagnosis of primary immunodeficiency by the
prescribing physician, determination of an initial
authorization for immune gamma globulin therapy shall be no
less than 3 months. Reauthorization for immune gamma globulin
therapy for patients with a primary immunodeficiency diagnosis
may occur every 6 months thereafter. For patients with a
diagnosis of primary immunodeficiency who have been receiving
immune gamma globulin therapy for at least 2 years with
sustained beneficial response based on the treatment notes or
clinical narrative detailing progress to date, reauthorization
shall be no less than 12 months unless a more frequent duration
has been indicated by the prescribing physician.
    (c) If, at any time, the Secretary of the United States
Department of Health and Human Services, or its successor
agency, promulgates rules or regulations to be published in the
Federal Register or publishes a comment in the Federal Register
or issues an opinion, guidance, or other action that would
require the State, pursuant to any provision of the Patient
Protection and Affordable Care Act (Public Law 111148),
including, but not limited to, 42 U.S.C. 18031(d)(3)(B) or any
successor provision, to defray the cost of any coverage
outlined in subsections (a) and (b), then subsections (a) and
(b) are inoperative with respect to all coverage outlined in
subsections (a) and (b) other than that authorized under
Section 1902 of the Social Security Act, 42 U.S.C. 1396a, and
the State shall not assume any obligation for the cost of the
coverage set forth in subsections (a) and (b).
 
    Section 99. Effective date. This Act takes effect upon
becoming law.

Effective Date: 8/12/2016