A-Z Guide: Pediatric Resources for Illinois Families

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Like many parents of children with disabilities, you may be feeling overwhelmed at the quantity of resources available to you, and how to access them.

Use the following checklist of key entitlements and resources for residents of Illinois.

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This organization aims to assist individuals with disabilities and enable them to live as independently as possible. While many services are geared toward adults, children with disabilities may be eligible for a minimum of 240 respite hours per year. To determine if your child is eligible, complete the referral form on their website.

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This program offers Medicaid Waiver and Non-Waiver programs to help families with children with special needs to connect to services and resources. Find more information and see if your child is eligible for services.

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If your child is between the ages of 0-3 and is experiencing delays with development, ask your physician for a referral to Early Intervention or reach them directly here.

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If your child is qualified and enrolled for services through DSCC, contact your child’s Care Coordinator to inquire about home modifications for which you may be eligible. If your child is not qualified for DSCC and you reside in Chicago, contact the Mayor’s Office for People with Disabilities to inquire about their home modification program.

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Individuals with developmental disabilities may be eligible for services under the Illinois Developmental Disability Waiver Program. To access these services, your child must be registered in the PUNS database. Learn more about PUNS, the services available, and how to access them.

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Starting at age 3, parents and guardians can request an IEP for children and seek to enroll them in school. For information and guidance about your rights as a parent of a child with special needs in Illinois, visit the Illinois State Board of Education website. Several agencies in Illinois offer resources, education and advocacy support related to the IEP process, including the Family Resource Center on Disabilities, Equip for Equality and Access Living.

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There are many opportunities for children with disabilities to participate in community sports and recreational activities.

• Shirley Ryan AbilityLab’s Tengelsen Family Foundation Sports for Kids offers many opportunities for children ages 7-17.   
• KEEN (Kids Enjoy Exercise Now) is a program in Chicago that is geared toward those aged 5-21.
• The Chicago Park District's special recreation services.
• For communities outside of Chicago, find sports and recreation information here.

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Individuals with a qualifying diagnosis who meet the financial criteria may be eligible for supplemental security income, a monthly payment to help cover the costs associated with a disability. The starter kit for children can be found on the federal Social Security Administration website.

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There are several transportation options that your child may be eligible to use. Access is determined depending on insurance and the individual child’s ability to use public transportation.

• If your child has Medicaid, First Transit can assist with transportation to medical appointments.
• If your child has a Medicaid-managed plan such as Blue Community, Aetna Better Health, County Care or Meridian, contact your plan's member services department to request transportation to medical appointments.
• Pace Paratransit is an option for any transportation needs (medical and non-medical), but your child will need to be assessed for eligibility. Determine your eligibility.

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If you have additional questions about entitlements and resources available to parents and individuals with disabilities in Illinois, ask to speak to the social worker at your physician’s office, or visit the Henry B. Betts LIFE Center at Shirley Ryan AbilityLab.

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Chris Lau, LSW, is a social worker in Outpatient Pediatrics at Shirley Ryan AbilityLab since 2008. She is dedicated to connecting patients and families to services and resources that will maximize their health and well-being.