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ARIZONA STATE SENATE
Fifty-Sixth Legislature, Second Regular Session
REVISED
developmental disabilities; Prader-Willi syndrome
Purpose
Expands the definition of developmental disability to include a severe, chronic disability that is attributable to Prader-Willi syndrome for the purpose of receiving services through the Department of Economic Security (DES) Division of Developmental Disabilities (DDD).
Background
Prader-Willi
syndrome is the most common of the genetic disorders that cause
life-threatening obesity in children. Prader-Willi syndrome is caused by
genetic changes on an unstable region of chromosome 15 that affects the
regulation of gene expression, or how genes turn on and off. After infancy,
symptoms of Prader-Willi syndrome include uncontrolled eating and delays in
reaching physical activity milestones, such as standing and walking (NIH).
A developmental
disability is either a strongly demonstrated potential that a child who is
under six years of age has or will develop a developmental disability, as
determined by a prescribed test or by other appropriate tests, or a severe,
chronic disability that: 1) is attributable to a cognitive disability, cerebral
palsy, epilepsy, Down syndrome or autism; 2) is manifested before the age of
18; 3) is likely to continue indefinitely; 4) reflects the need for a
combination and sequence of individually planned or coordinated special,
interdisciplinary or generic care, treatment or other services that are of
lifelong or extended duration; and 5) results in substantial functional
limitations in three or more areas of major life activity. Areas of major life
activity include: 1) self-care;
2) receptive and expressive language; 3) learning; 4) mobility; 5)
self-direction; 6) capacity for independent living; and 7) economic
self-sufficiency (A.R.S.
§ 36-551).
The Director of DES is responsible for developing and annually revising a statewide plan and initiating statewide programs and services for persons with developmental disabilities. Services include child, adult, residential and resource services. An Arizona resident with a developmental disability, supported by medical and psychological documentation, is eligible to apply for developmental disabilities programs, services and facilities operated, licensed and supervised by DES (A.R.S. §§ 36-554 and 36-559).
DDD is the division of DES that empowers individuals with developmental disabilities to lead self-directed, healthy and meaningful lives. DDD provides support and services for eligible Arizonans diagnosed with one of the following developmental disabilities: 1) autism; 2) cerebral palsy; 3) epilepsy; 4) cognitive or intellectual disability; and 5) Down syndrome. Children under the age of six who are at risk of having a developmental disability may also qualify. DDD serves more than 40,000 people with developmental disabilities and their families throughout Arizona each year (DDD).
The Joint Legislative Budget Committee fiscal note on S.B. 1191 estimates that the bill would increase enrollment in the DDD program by 183 individuals annually and that each enrollee would have service costs of $74,100 annually. As a result, the bill would increase DDD costs by $4.67 million from the General Fund annually (JLBC).
Provisions
1. Expands the definition of developmental disability to include a severe, chronic disability that is attributable to a pathogenic genetic mutation associated with neurodevelopmental disabilities, including Prader-Willi syndrome.
2. Defines Prader-Willi syndrome as a genetic disorder that is characterized by short stature, cognitive impairment, hypotonia, abnormally small hands and feet, hypogonadism and uncontrolled appetite leading to extreme obesity.
3. Makes conforming changes.
4. Becomes effective on the general effective date.
Revised
· Updates the fiscal impact statement.
Senate Action
HHS 1/30/24 DP 7-0-0
APPROP 2/6/24 DP 7-2-1
Prepared by Senate Research
March 5, 2024
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