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A MEDICAID WAIVER FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES AND/OR AUTISM
January 27, 2006
The Autism Society, The Arc of Illinois, The Family Support Network of Illinois
1. We recognize and appreciate the important work of the Autism Task Force and commend their task force report making important recommendations supporting individuals with autism in the State of Illinois.
2. The Autism Task Force has recommended that the Governor and State Legislature should give a Children’s Autism Waiver”the highest priority” this year.
3. Illinois remains one of a few states that do not have a Medicaid Waiver for Children with Developmental Disabilities and/or Autism.
4. We acknowledge that ALL children with developmental disabilities are underserved in Illinois.
5. We recommend that Illinois apply for a Waiver for Children with Developmental Disabilities and/or Autism immediately.
6. We recommend the Children’s Waiver include children with Autism. This waiver will provide federal matching funds to the state through reimbursement by the federal government for services provided under this waiver.
7. We agree that on or before June 1, 2006, the Department of Healthcare and Family Services and the Department of Human Services shall prepare and submit to the federal Centers for Medicare and Medicaid Services an application for an Illinois Developmental Disabilities Children’s Waiver for Children including Children with Autism and Autism Spectrum Disorders (“ASD”), pursuant to Section 1915 (c) of the federal Social Security Act, to take effect on or before January 1, The waiver shall provide for services for children with developmental disabilities who are ages 3 through 21. The Department of Human Services Shall administer the Developmental Disability Children’s Waiver.
8. The Children’s waiver shall provide for no fewer than 800 children in the first year, no fewer than1,750 children in the second year, and no fewer than 3,350 children in the third year. Of those totals, no fewer than 500 children with autism shall receive services in the first year of its implementation, no fewer than 1,000 such children in the second year, and no fewer than 2,000 such children in the third and subsequent years.
9. The waiver shall provide for a waiver of family income as a consideration for participation in the program. The waiver shall not waive statewideness. Each family participating in the waiver program shall receive a financial allotment for services and supports and shall be able to select individualized services from the array of available services. The financial allotment shall be ample enough to provide an adequate array of services that can effectively meet the child’s needs and shall equal no less than 2.5 times the equivalent of the then-prevailing rate of Supplemental Security Income. The waiver shall allow for direct hiring of support personnel by parents or caregivers, including but not limited to (i) line therapists who are not providers under the medical assistance program under Article V of the Illinois Public Aid Code or their employees and (ii) family members.
10. At a minimum, the Home and Community Based Services Medicaid Waiver for Children with Developmental Disabilities and/or Autism or Autism Spectrum Disorders shall include the following services, to be directed by the parents or caregivers on behalf of the waiver services recipient pursuant to an individualized service plan:
(1) Applied Behavioral Analysis Therapy, or an analogous habilitative methodology.
(2) Parent/Care Giver Education
(3) Social skills training.
(4) In-home supports.
(5) Respite.
(6) Occupational, physical, and communication therapy (in excess of or not duplicative of the basic State Medicaid Plan services).
(7) Environmental modifications to the home, including but not limited to (i) technological aids to assist with the individual’s safety and security and (ii) therapy or habilitation supplies and equipment needed for implementing the service plan.
(8) Transition services to employment.
(9) Transition services to independent living.
(10) Individual Service Coordination (Optional)
(11) Day Care
(12) Crisis Services
(13) 24 Hour Emergency Services
(14) Specialists
(15) Other Assistive Technology
(16) Live in Care Expenses
11. Eligibility for Developmental Disabilities Children’s Waiver including Children with Autism shall be the federal definition of a developmental disability. The term “developmental disability means a severe, chronic disability of an individual that
a. is attributable to mental or physical impairment or combination of mental and physical impairments
b. Is manifested before the individual attains age 22
c. Is likely to continue indefinitely
d. Results in substantial functional limitations in 3 or more of the following areas of major life activity:
i. Self-care
ii. Receptive and expressive language
iii. Learning
iv. Mobility
v. Self-direction
vi. Capacity for independent living
vii. Economic self-sufficiency and
1. 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.
2. Infants and Young Children. An individual from birth to age 9, inclusive, who has a substantial developmental delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the criteria described in clauses (a) through (1) if the individual, without services and supports, has a high probability of meeting those criteria later in life.
12. Autism Assessment Tool. On or before June1, 2006, the Department of Human Services working with family representatives from the Autism Society, The Arc of Illinois and the Family Support Network of Illinois, shall develop an assessment tool to determine eligibility for services under the waiver program. The tool shall incorporate children with a diagnosis of autism or pervasive developmental disability. The tool shall assess that the individual will require an ICF/MR or institutional level of care if it were not for the availability of the home and community-based services. The tool shall take into consideration the following elements:
(1) A child between the ages of 3 and 21 years must have a diagnosis of an ASD in accordance with DSM IV Pervasive Developmental Disorder, determined by a Professional qualified to make such a diagnosis.
(2) In addition, the child must exhibit at least 2 of the following criteria:
(A) Engages in behaviors or activities that may result in serious physical injury to himself or herself or others.
(B) Lacks age-appropriate comprehension to predict outcomes for actions and behaviors, including but not limited to acting impulsively and without regard for consequences, such as running into traffic.
(C) Is unable to verbalize or functionally communicate information or needs.
(D) Is unable to comprehend the age-appropriate meaning of language or other forms of communication.
(E) Is unable to complete age-appropriate daily living activities such as toileting, bathing, dressing, and feeding.
(F) Engages in self-stimulation or behaviors to a degree that hinders age-appropriate participation in home and community environments.
(G) Lacks age-appropriate social skills and understanding to a degree that inhibits meaningful participation in the educational and community environment.
(H) Exhibits a degree of rigidity, obsessions, or compulsive behaviors that inhibits meaningful participation in his or her home or community environment.
13. Funding. All federal matching funds for the waiver program under this Act shall be placed in a dedicated fund to support additional services in the waiver program.
14. Rules. On or before September 1, 2006, the Department of Human Services and the State Board of Education shall adopt rule that allocate responsibilities between those agencies and establish procedures necessary to coordinate educational services with other home and community services not
based in the education system, as well as transitional services to adult services.
15. Illinois could maximize federal funding by claiming on existing children’s services that could be included in a children’s waiver. The current Illinois budget contains over $40 million in general revenue funds for services such as in-home supports, respite, therapies, and children’s residential homes. Creation of a children’s waiver could capture over $20 million in federal matching dollars for re-investment in the Children’s Waiver. Source Gettings Report, 2003.
16. Children enrolled in the new waiver will automatically transition into the Home-Based Services Programs at age 21 as long as they continue to qualify.
17. Illinois should support the creation of a new and separate waiver for residential services for children with developmental disabilities and autism.
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