HB2541 104TH GENERAL ASSEMBLY

LRB104 08083 KTG 18129 b

104TH GENERAL ASSEMBLY
State of Illinois
2025 and 2026
HB2541

Introduced 2/4/2025, by Rep. Nicole La Ha

SYNOPSIS AS INTRODUCED:

5 ILCS 70/1.42
20 ILCS 1705/3.5 new
405 ILCS 5/1-106	from Ch. 91 1/2, par. 1-106
405 ILCS 80/2-3	from Ch. 91 1/2, par. 1802-3

Amends the Mental Health and Developmental Disabilities Code. Expands the definition of "developmental disability" to include a disability attributable to Prader-Willi syndrome. Amends the Developmental Disability and Mental Disability Services Act. Expands the definition of "severe and multiple impairments" to include a substantial disability attributable to Prader-Willi syndrome. Exempts persons diagnosed with Prader-Willi syndrome from any assessment or evaluation to measure cognitive functioning or IQ for purposes of making determinations on whether such persons have severe and multiple impairments eligible for home-based and community-based services. Amends the Mental Health and Developmental Disabilities Administrative Act. Requires the Department of Human Services to include Prader-Willi syndrome as a developmental disability in any rule defining the term "developmental disability" and in any rule listing specific medical conditions or disabilities eligible for developmental disability services provided by the Department. Amends the Statute on Statutes. Provides that, except where the context indicates otherwise: (i) in any rule, contract, or other document the term "developmental disability" shall include a disability attributable to Prader-Willi syndrome; and (ii) whenever there is a reference in any Act to "development disability" the term shall be construed to include a disability attributable to Prader-Willi syndrome.

A BILL FOR

AN ACT concerning mental health.

Be it enacted by the People of the State of Illinois, represented in the General Assembly:

Section 5. The Statute on Statutes is amended by changing Section 1.42 as follows:

(5 ILCS 70/1.42)

Sec. 1.42. Developmental disability.

(a) Except where the context indicates otherwise, in any rule, contract, or other document a reference to a developmentally disabled person or a similar reference shall be considered a reference to a person with a developmental disability and a reference to the developmentally disabled or a similar reference shall be considered a reference to persons with developmental disabilities.

(b) Except where the context indicates otherwise, in any rule, contract, or other document the term "developmental disability" shall include a disability attributable to Prader-Willi syndrome.

(c) Except where the context indicates otherwise, whenever there is a reference in any Act to "development disability" this term shall be construed to include a disability attributable to Prader-Willi syndrome.

(d) The use of either "developmentally disabled" or "developmental disability" or "the developmentally disabled" or "persons with developmental disabilities" shall not invalidate any rule, contract, or other document.

(Source: P.A. 99-143, eff. 7-27-15.)

Section 10. The Mental Health and Developmental Disabilities Administrative Act is amended by adding Section 3.5 as follows:

(20 ILCS 1705/3.5 new)

Sec. 3.5. Prader-Willi syndrome. The Department shall include Prader-Willi syndrome as a developmental disability in any rule defining the term "developmental disability" and in any rule listing specific medical conditions or disabilities eligible for developmental disability services provided by the Department.

Section 15. The Mental Health and Developmental Disabilities Code is amended by changing Section 1-106 as follows:

(405 ILCS 5/1-106) (from Ch. 91 1/2, par. 1-106)

Sec. 1-106. "Developmental disability" means a severe, chronic disability, other than mental illness, found to be closely related to an intellectual disability because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of persons with ID, and requires services similar to those required for a person with an intellectual disability. In addition, a developmental disability: (1) is manifested before the individual reaches 22 years of age; (2) is likely to continue indefinitely; (3) results in substantial functional limitations in three or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, or economic self-sufficiency; and (4) reflects the individual's need for a combination and sequence of special interdisciplinary or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated. "Developmental disability" includes a disability attributable to Prader-Willi syndrome. This definition does not supersede the "developmental disability" definition in Section 1.1 of the Firearm Owners Identification Card Act which is required to be applied under that Act for the purpose of mandatory reporting.

(Source: P.A. 102-972, eff. 1-1-23.)

Section 20. The Developmental Disability and Mental Disability Services Act is amended by changing Section 2-3 as follows:

(405 ILCS 80/2-3) (from Ch. 91 1/2, par. 1802-3)

Sec. 2-3. As used in this Article, unless the context requires otherwise:

(a) "Agency" means an agency or entity licensed by the Department pursuant to this Article or pursuant to the Community Residential Alternatives Licensing Act.

(b) "Department" means the Department of Human Services, as successor to the Department of Mental Health and Developmental Disabilities.

(c) "Home-based services" means services provided to an adult with a mental disability who lives in his or her own home. These services include but are not limited to:

(1) home health services;

(2) case management;

(3) crisis management;

(4) training and assistance in self-care;

(5) personal care services;

(6) habilitation and rehabilitation services;

(7) employment-related services;

(8) respite care; and

(9) other skill training that enables a person to become self-supporting.

(d) "Legal guardian" means a person appointed by a court of competent jurisdiction to exercise certain powers on behalf of an adult with a mental disability.

(e) "Adult with a mental disability" means a person over the age of 18 years who lives in his or her own home; who needs home-based services, but does not require 24-hour-a-day supervision; and who has one of the following conditions: severe autism, severe mental illness, a severe or profound intellectual disability, or severe and multiple impairments.

(f) In one's "own home" means that an adult with a mental disability lives alone; or that an adult with a mental disability is in full-time residence with his or her parents, legal guardian, or other relatives; or that an adult with a mental disability is in full-time residence in a setting not subject to licensure under the Nursing Home Care Act, the Specialized Mental Health Rehabilitation Act of 2013, the ID/DD Community Care Act, the MC/DD Act, or the Child Care Act of 1969, as now or hereafter amended, with 3 or fewer other adults unrelated to the adult with a mental disability who do not provide home-based services to the adult with a mental disability.

(g) "Parent" means the biological or adoptive parent of an adult with a mental disability, or a person licensed as a foster parent under the laws of this State who acts as a foster parent to an adult with a mental disability.

(h) "Relative" means any of the following relationships by blood, marriage or adoption: parent, son, daughter, brother, sister, grandparent, uncle, aunt, nephew, niece, great grandparent, great uncle, great aunt, stepbrother, stepsister, stepson, stepdaughter, stepparent or first cousin.

(i) "Severe autism" means a lifelong developmental disability which is typically manifested before 30 months of age and is characterized by severe disturbances in reciprocal social interactions; verbal and nonverbal communication and imaginative activity; and repertoire of activities and interests. A person shall be determined severely autistic, for purposes of this Article, if both of the following are present:

(1) Diagnosis consistent with the criteria for autistic disorder in the current edition of the Diagnostic and Statistical Manual of Mental Disorders.

(2) Severe disturbances in reciprocal social interactions; verbal and nonverbal communication and imaginative activity; repertoire of activities and interests. A determination of severe autism shall be based upon a comprehensive, documented assessment with an evaluation by a licensed clinical psychologist or psychiatrist. A determination of severe autism shall not be based solely on behaviors relating to environmental, cultural or economic differences.

(j) "Severe mental illness" means the manifestation of all of the following characteristics:

(1) A primary diagnosis of one of the major mental disorders in the current edition of the Diagnostic and Statistical Manual of Mental Disorders listed below:

(A) Schizophrenia disorder.

(B) Delusional disorder.

(C) Schizo-affective disorder.

(D) Bipolar affective disorder.

(E) Atypical psychosis.

(F) Major depression, recurrent.

(2) The individual's mental illness must substantially impair his or her functioning in at least 2 of the following areas:

(A) Self-maintenance.

(B) Social functioning.

(C) Activities of community living.

(D) Work skills.

(3) Disability must be present or expected to be present for at least one year.

A determination of severe mental illness shall be based upon a comprehensive, documented assessment with an evaluation by a licensed clinical psychologist or psychiatrist, and shall not be based solely on behaviors relating to environmental, cultural or economic differences.

(k) "Severe or profound intellectual disability" means a manifestation of all of the following characteristics:

(1) A diagnosis which meets Classification in Mental Retardation or criteria in the current edition of the Diagnostic and Statistical Manual of Mental Disorders for severe or profound mental retardation (an IQ of 40 or below). This must be measured by a standardized instrument for general intellectual functioning.

(2) A severe or profound level of disturbed adaptive behavior. This must be measured by a standardized adaptive behavior scale or informal appraisal by the professional in keeping with illustrations in Classification in Mental Retardation, 1983.

(3) Disability diagnosed before age of 18.

A determination of a severe or profound intellectual disability shall be based upon a comprehensive, documented assessment with an evaluation by a licensed clinical psychologist or certified school psychologist or a psychiatrist, and shall not be based solely on behaviors relating to environmental, cultural or economic differences.

(l) "Severe and multiple impairments" means the manifestation of all of the following characteristics:

(1) The evaluation determines the presence of a developmental disability which is expected to continue indefinitely, constitutes a substantial disability and is attributable to any of the following:

(A) Intellectual disability as defined in Section 1-116 of the Mental Health and Developmental Disabilities Code.

(B) Cerebral palsy.

(C) Epilepsy.

(D) Autism.

(E) Prader-Willi syndrome.

(F) (E) Any other condition which results in impairment similar to that caused by an intellectual disability and which requires services similar to those required by persons with intellectual disabilities.

(2) Except as otherwise provided for persons diagnosed with Prader-Willi syndrome, the The evaluation determines multiple disabilities in physical, sensory, behavioral or cognitive functioning which constitute a severe or profound impairment attributable to one or more of the following:

(A) Physical functioning, which severely impairs the individual's motor performance that may be due to:

(i) Neurological, psychological or physical involvement resulting in a variety of disabling conditions such as hemiplegia, quadriplegia or ataxia,

(ii) Severe organ systems involvement such as congenital heart defect,

(iii) Physical abnormalities resulting in the individual being non-mobile and non-ambulatory or confined to bed and receiving assistance in transferring, or

(iv) The need for regular medical or nursing supervision such as gastrostomy care and feeding.

Assessment of physical functioning must be based on clinical medical assessment by a physician licensed to practice medicine in all its branches, using the appropriate instruments, techniques and standards of measurement required by the professional.

(B) Sensory, which involves severe restriction due to hearing or visual impairment limiting the individual's movement and creating dependence in completing most daily activities. Hearing impairment is defined as a loss of 70 decibels aided or speech discrimination of less than 50% aided. Visual impairment is defined as 20/200 corrected in the better eye or a visual field of 20 degrees or less. Sensory functioning must be based on clinical medical assessment by a physician licensed to practice medicine in all its branches using the appropriate instruments, techniques and standards of measurement required by the professional.

(C) Behavioral, which involves behavior that is maladaptive and presents a danger to self or others, is destructive to property by deliberately breaking, destroying or defacing objects, is disruptive by fighting, or has other socially offensive behaviors in sufficient frequency or severity to seriously limit social integration. Assessment of behavioral functioning may be measured by a standardized scale or informal appraisal by a clinical psychologist or psychiatrist.

(D) Cognitive, which involves intellectual functioning at a measured IQ of 70 or below. Assessment of cognitive functioning must be measured by a standardized instrument for general intelligence. Persons diagnosed with Prader-Willi syndrome are exempt from any assessment or evaluation to measure cognitive functioning or IQ for purposes of making a determination of severe and multiple impairments.

(3) Except as otherwise provided for persons diagnosed with Prader-Willi syndrome, the The evaluation determines that development is substantially less than expected for the age in cognitive, affective or psychomotor behavior as follows:

(A) Cognitive, which involves intellectual functioning at a measured IQ of 70 or below. Assessment of cognitive functioning must be measured by a standardized instrument for general intelligence. Persons diagnosed with Prader-Willi syndrome are exempt from any assessment or evaluation to measure cognitive functioning or IQ for purposes of making a determination on whether such persons have severe and multiple impairments.

(B) Affective behavior, which involves over and under responding to stimuli in the environment and may be observed in mood, attention to awareness, or in behaviors such as euphoria, anger or sadness that seriously limit integration into society. Affective behavior must be based on clinical assessment using the appropriate instruments, techniques and standards of measurement required by the professional.

(C) Psychomotor, which includes a severe developmental delay in fine or gross motor skills so that development in self-care, social interaction, communication or physical activity will be greatly delayed or restricted.

(4) A determination that the disability originated before the age of 18 years.

A determination of severe and multiple impairments shall be based upon a comprehensive, documented assessment with an evaluation by a licensed clinical psychologist or psychiatrist. Persons diagnosed with Prader-Willi syndrome are exempt from any assessment or evaluation to measure cognitive functioning or IQ for purposes of making determinations on whether such persons have severe and multiple impairments eligible for home-based and community-based services.

If the examiner is a licensed clinical psychologist, ancillary evaluation of physical impairment, cerebral palsy or epilepsy must be made by a physician licensed to practice medicine in all its branches.

Regardless of the discipline of the examiner, ancillary evaluation of visual impairment must be made by an ophthalmologist or a licensed optometrist.

Regardless of the discipline of the examiner, ancillary evaluation of hearing impairment must be made by an otolaryngologist or an audiologist with a certificate of clinical competency.

The only exception to the above is in the case of a person with cerebral palsy or epilepsy who, according to the eligibility criteria listed below, has multiple impairments which are only physical and sensory. In such a case, a physician licensed to practice medicine in all its branches may serve as the examiner.

(m) "Twenty-four-hour-a-day supervision" means 24-hour-a-day care by a trained mental health or developmental disability professional on an ongoing basis.

(Source: P.A. 102-972, eff. 1-1-23.)