Illinois Neurological Institute

Care Navigator for Children and Adults with Spina Bifida

There are a lot of organizations that provide programs and services for people with spina bifida and their families. With so many options geared to so many different age groups, it can be difficult to understand which ones are available to you. We have compiled information about available services and organized it for you to make it easier to find what you need.

  • Benefits and Insurance
  • Birth-3 years old 3-5 years old 6-13 years old 14-18 years old 18 years old +
    Insurance/All Kids/Medicaid Insurance/All Kids/Medicaid Insurance/All Kids/Medicaid Insurance/All Kids/Medicaid Insurance/All Kids
    Division of Specialized care for Children Division of Specialized care for Children Division of Specialized care for Children Division of Specialized care for Children Division of Specialized care for Children
    Supplemental Security Income Supplemental Security Income Supplemental Security Income Supplemental Security Income Supplemental Security Income
    Women, Infants, Children Women, Infants, Children      

     

    Medicaid/All Kids
    211 Fulton St., Suite 300 Peoria, IL 61602 | (800) 843-6154 | dhs.state.il.us

    This medical aid program is designed for those who are unable to afford regular medical service and is financed by the state of Illinois and local governments. The program is administered by the Illinois Department of Human Services (DHS).

     

    Division of Specialized Care for Children (DSCC), Peoria Regional Office
    7013 N. Stalworth Dr., Peoria, IL 61615-9465 | (309) 693-5350 | dsc.uic.edu

    DSCC’s mission focuses on public service, education, and promoting coordinated family-centered care for eligible children with special health care needs in Illinois from birth to age 21. DSCC may be able to provide additional help to pay for specialty care for certain medical conditions and equipment.

     

    Supplemental Security Income (SSI) Title XVI
    (800) 772-1213 | ssa.gov

    SSI provides monthly payments to people who are either 65 or older, blind, or disabled. The SSI office will look at both disability and financial situation. Children and adults can apply for SSI. Once a person is 18 years old, parental income is no longer considered when evaluating a financial situation.

     

    Social Security Disability Insurance (SSDI) Title II
    (200) 772-1213 | ssa.gov

    SSDI pays benefits to you and certain members of your family if you are insured, meaning you worked for a qualifying length of time and paid Social Security taxes. Children over the age of 18 who have a disability may receive benefits if his or her parent worked for a qualifying length of time, paid Social Security taxes and is retired, disabled, or deceased. These adult children are termed “disabled adult children” (DAC).

     

    Women, Infants, and Children (WIC)
    (800) 323-4769 | dhs.state.il.us

    WIC is a supplemental nutrition program for women, infants, and children. WIC may help provide healthy food or certain types of formulas for women who are pregnant or breastfeeding, have a child under 5 years of age, have limited income and are looking to improve their family’s health and nutrition education. Call the local WIC clinic to schedule an appointment.

  • Education and Employment Services
  • Birth-3 Years old 3-5 years old 6-13 years old 14-18 years old 18 years old +
    Early Intervention (Easter Seals- Peoria) Pre School Transition School Age Education Services (IEP/504) IEP Transition Planning Post High School Plan
          Vocation Rehabilitation (DRS) Vocation Rehabilitation (DRS)
          Work Incentive Planning (if have SSI) Work Incentive Planning (if have SSI)
          Goodwill Industries Goodwill Industries

    Easter Seals UCP (Child and Family Connections #14): Early Intervention
    3000 W. Rohmann Ave., West Peoria, IL 61604 | (309) 672-6360

    The Early Intervention program provides developmental resources and support to families who have infants and toddlers – birth to 3 years – with diagnosed disabilities, developmental delays or substantial risk of significant delays. Some services may include occupational and physical therapy, as well as social work support. If your child is in Early Intervention, speak with your coordinator to start planning for the transition into pre-school after Early Intervention services end.

     

    Individualized Education Program (IEP)
    Illinois State Board of Education | isbe.net | Public School District

    Children with delayed skills or other disabilities might be eligible for individualized education programs in public schools, free of charge to families. Understanding access to these services can help parents advocate effectively for their children. Parents can work with educators to develop a plan to help their child succeed in school. The IEP describes the goals the team sets for a child during the school year, and identifies the special support needed to help achieve them. When a child reaches 14 years of age, the IEP will start to address the transition planning for life after high school. All teens should start to have a post high school plan by the age of 17.

     

    Work Incentive Planning & Assistance Program
    DHS Family Community Resource Center in Peoria County | Family Community Resource Center
    211 Fulton St., Suite 300 Peoria, IL 61602 | (800) 807-6682 | dhs.state.il.us

    People receiving supplemental security income (SSI) who want to work should meet with a community work incentive coordinator to understand how benefits may be affected by going to, or returning to, work. Contact your local office to set up a free benefits planning session.

     

    Goodwill Industries of Central Illinois

    2319 E. War Memorial Drive, Peoria, IL 61614 | (309) 682-1113 | goodwillpeo.org
    Goodwill offers a wide variety of programs free of charge, including job preparation, learning centers, a youth mentoring program, a workshop series, and a retail project. For information specific to youth services, contact Lyndsie: (309) 369-2335.

  • Developmental and Disability Services
  • Birth-3 Years old 3-5 years old 6-13 years old 14-18 years old 18 years old +
    Division of Developmental Disability Division of Developmental Disability Division of Developmental Disability Division of Developmental Disability Division of Developmental Disability
    Easter Seals Easter Seals Easter Seals Easter Seals Easter Seals

    Division of Developmental Disability
    (800) 843-6154| dhs.state.il.us

    The Department of Human Service’s Division of Development Disability provides services and support for individuals with developmental disabilities and their families. Services include: in-home support, respite care, training programs, job coaches, residential living arrangements and adaptive equipment. Coordination agencies are located throughout Illinois. Intake coordinators will complete a “Prioritization of Urgency of Need for Services” (PUNS) form. Services available for all ages. See social services for more information on PUNS.

     

    Easter Seals
    507 E. Armstrong Ave., Peoria, IL 61603-3197 | (309) 686-1177 | easterseals.com/ci

    Easter Seals provides services to ensure that people with disabilities and their families have equal opportunity to live, learn, work and play in their communities. Therapy services include physical therapy, occupational therapy, speech therapy, aquatic therapy, counseling, developmental therapy, and the therapeutic fitness center. Other services include: assistive technology clinic, orthotics clinic, constraint-induced movement therapy, support groups, respite programs, and augmentative communication. Services are provided from birth to age 21.

  • Support, Recreation and Sport Opportunities
  • Birth-3 Years old 3-5 years old 6-13 yars old 14-18 years old 18 years old +
    Illinois Spina Bifida Association Member Illinois Spina Bifida Association Member Illinois Spina Bifida Association Member Illinois Spina Bifida Association Member Illinois Spina Bifida Association Member
        Camp Independence Camp Independence Camp Independence
    HISRA HISRA HISRA HISRA HISRA
      AMBUCS AMBUCS AMBUCS AMBUCS

    Illinois Spina Bifida Association of Illinois (ISBA)
    2211 N. Oak Park Ave., Chicago, IL 60707 | (773) 444-0305 |  i-sba.org

    The ISBA is a nonprofit organization dedicated to promoting prevention of spina bifida and enhancing the lives of those affected. The association provides information, education, advocacy and services to the community, those living with spina bifida and their families. Services include annual walk-a-thons, holiday parties, social network support, play dates, emergency funds, crossroads newsletter, and support groups. Join the Facebook support page.

    The Central Illinois ISBA Support Group
    This support group for people with spina bifida and their families typically meets at 6:45 p.m. on the third Thursday of each month at OSF Medical Group – College Avenue, 1701 E. College Ave., Bloomington, Illinois. The format varies from speakers to informal networking. For more information about this group or to RSVP, email Lynn at lynn.bradtke@comcast.net.

    Peoria ISBA Support Group
    RSVP to (773) 444-0305 or info@i-sba.org.

    People living with spina bifida and their families are invited to join this Peoria support group. The support group meets on the second Monday of each month at Children's Hospital of Illinois, 420 NE Glen Oak, Suite 201, Peoria, Illinois.

    Camp Independence: YMCA Camp Duncan
    (847) 546-8086 | ymcacampduncan.org

    Camp Independence is a program run by the YMCA of Metro Chicago in association with the Illinois Spina Bifida Association. It is an overnight camp designed for people with spina bifida, age 7 through adult. Campers are encouraged to learn self-care skills, develop new friendships and try new adaptive sports.

    HISRA: Heart of Illinois Special Recreation Association
    8727 Pioneer Road, Peoria, IL 61615 | (309) 691-1929 | hisra.org
    HISRA is the result of a desire on the part of the Chillicothe, Morton, Peoria and Washington park districts to provide quality recreation programs and services to individuals with disabilities and special needs. HISRA and its member districts enthusiastically support the spirit and intent of the Americans with Disabilities Act. HISRA is committed to providing opportunities for every individual to enjoy recreation activities in the least restrictive environment possible. Scholarship programs are available.

    AMBUCS
    (800) 838-1845 | ambucs.org | ambucs@ambucs.org

    National AMBUCS, Inc. is a nonprofit charitable organization dedicated to creating mobility and independence for people with disabilities. Members put the mission into action by providing Amtryke therapeutic tricycles to individuals unable to operate a traditional bike, awarding academic scholarships for therapists, and performing various other forms of community service for people with disabilities.

  • Community and Life Skills Support
  • Birth-3 years old 3-5 years old 6-13 years old 14-18 years old 18 years old +
    Local Center for Independent Living Local Center for Independent Living Local Center for Independent Living Local Center for Independent Living Local Center for Independent Living
    County Health Department County Health Department County Health Department County Health Department County Health Department
      DHS Rehab Services DHS Rehab Services DHS Rehab Services DHS Rehab Services
          Circuit Breaker (Ride Free Program) Circuit Breaker (Ride Free Program)

    Center for Independent Living
    (217) 525-1312 | incil.org

    This is a statewide association with a membership consisting of 22 centers of independent living. Through the centers, people with disabilities in Illinois are empowered with the knowledge and skills to make their own life choices, and to pursue self-sufficiency and full participation in their communities. The center offer four core services: peer mentoring, information and referral, independent living skills training, and advocacy. All services are free and individualized.

     

    County Health Departments (Services vary by county)

     

    Peoria County Health Department
    2116 N. Sheridan Road, Peoria, IL 61604
    | (309) 679-6000 | peoriacounty.org
    Peoria County Health Department offers WIC services.

    Tazewell County Health Department
    21306 Illinois Route 9, Tremont, IL 61568 | (309) 925-5511 | tazewellhealth.org

    • Family Case Management
      This program is funded by the Illinois Department of Human Services (DHS). It provides public health nursing services to all medically eligible pregnant women and to children up to the age of 12 months. These services include home visits. Health education, growth and development assessments, and referrals to needed services are provided.
    • Perinatal Follow-up
      All infants admitted to OSF High-Risk Nursery receive home visits at one to two weeks after leaving the hospital, six months, 12 months, 18 months, and 2 years. Growth and development are monitored at each visit. Appropriate referrals are made when physical or developmental problems are identified.
    • Breastfeeding Peer Counselors
      Breastfeeding peer counselors provide home visits and phone counseling to breastfeeding WIC moms when they are in need of help with common breastfeeding concerns and issues. The peer counselors are available to call or text day or night.
      Breastfeeding Peer Counselors:
    • Danette Eubank (309) 267-7713
    • Carrie Peplow (309) 267-7714
    • WIC Services

    Tazewell County Resource Center (TCRC)
    21310 Illinois Route 9, Tremont, IL 61568 | (309) 347-7148 | tcrcorg.com

    TCRC offers a wide array of programs and services that benefit people with developmental disabilities and visual impairments. The agency operates 10 facilities located in Tazewell County. TCRD offers job training and placement, goal-oriented therapy, case management, day programs, help for the visually impaired, vocational services, homelike residential programs, and more.

     

    McLean County Health Department
    200 W. Front St., Bloomington, IL 61701 | (309) 888-5450 | health.mcleancountyil.gov

    • Behavioral Health
      The health department coordinates behavioral health care and treatment for residents with mental health, substance abuse or developmental disabilities.
    • Family Case Management
      This free program is offered in cooperation with the Illinois Department of Human Services. It connects children under the age of 1 and pregnant women to health and wellness services. This program offers guidance and support to families so they have healthy babies and lead healthy lives.
    • WIC Services

    Woodford County
    1831 S. Main St., Eureka, IL 61530 | (309) 467-3064 | woodfordhealth.org

    Woodford County Health Department offers WIC services.

    Rehab Life Skills
    Division of Rehabilitation Services (DRS)
    Peoria DRS Office: 211 Fulton St., Suite 207 Peoria, IL 61602 | (309) 671-8580 | dhs.state.il.us

    DHS's Division of Rehabilitation Services is the state of Illinois’ lead agency serving individuals with disabilities. DRS assists people with disabilities and their families with making informed choices to achieve full community participation through employment, education and independent living opportunities.

    Ride Free Transit Program
    Illinois Department of Aging
    (800) 624-2459 | state.il.us/aging

    The Illinois Department of Aging provides grants to senior citizens and persons with disabilities. Many individuals with spina bifida utilize the Ride Free program, which offers free public transportation access to individuals who meet the disability and income requirements. You can apply online or call. If you are approved you will receive a postcard in the mail, which you must take to your local Regional Transportation Authority office to receive your pass.

  • Future Needs Planning
  • Birth-3 years old 3-5 years old 6-13 years old 14-18 years old 18 years old +
    Legal Services Legal Services Legal Services Legal Services Legal Services
          Guardianship Guardianship
          Power of Attorney (health care) Power of Attorney (health care)

    Prairie State Legal Services
    331 Fulton St., Suite 600, Peoria, IL 61602 | (309) 674-9831 and (800) 322-2280 | pslegal.org

    Prairie State Legal Services offers free legal services for low income people and those age 60 and over who have serious civil legal problems and need help to solve them. There are 12 office locations serving 36 counties in northern Illinois.

    Guardianship

    Illinois Guardianship and Advocacy Commission
    401 Main St., Suite 620, Peoria, IL 61602 | (309) 671-3030

    The Illinois Guardianship and Advocacy Commission is an executive state agency that protects the rights and promotes the welfare of people with disabilities. A board of 11 commissioners, who serve without compensation, governs the agency. The commission provides legal representation, investigates complaints of rights violations, and provides state guardianship for Illinois' population with disabilities.

    Power of Attorney (health care)
    This document gives a person of your choice the ability to make any and all decisions concerning your personal care, medical treatment, hospitalization and health care should you be incapacitated and unable to make your own decisions. That includes requiring, withholding or withdrawing any type of medical treatment or procedure, even though your death may ensue. The person you designate shall have the same access to your medical records that you have, including the right to disclose the content to others. The person you designate should have full power to make a disposition of any part or all of your body for medical purposes, authorize an autopsy and direct the disposition of your remains.

  • Health Care Plan
  • Birth-3 years old 3-5 years old 6-13 years old 14-18 years old 18 years old +
    OSF/INI Spina Bifida Clinic OSF/INI Spina Bifida Clinic OSF/INI Spina Bifida Clinic OSF/INI Spina Bifida Clinic OSF/INI Spina Bifida Clinic
    Primary Care Doctor (Pediatrician) Primary Care Doctor (Pediatrician) Primary Care Doctor (Pediatrician) Primary Care Doctor (Pediatrician, Family medicine) Primary Care Doctor (Family Medicine, Internist)
      Pediatric Dentist Pediatric Dentist Pediatric Dentist Adult Dentist
            Women’s Health Doctor

    Primary Care Doctor
    All children and adults should have a primary care doctor. Speak with your medical team if you need help connecting to a primary care doctor.

    OSF Saint Francis Medical Center Spina Bifida Clinic
    420 NE Glen Oak, Suite 201, Peoria, IL 61603 | (309) 676-0766

    OSF Saint Francis Medical Center’s spina bifida clinic is held on the second Monday of each month. The clinic aids families in meeting the special challenges associated with spina bifida. The staff consists of a developmental pediatrician, neurosurgeon, orthopedist, urologist and clinic coordinator. The staff also includes representatives from orthopedic supplies, physical therapy, dietary, Department of Specialized Care for Children (DSCC), and social services. For more information or an appointment, please call (309) 655-2343. The clinic is part of the Pediatric Surgery Center, located in Hillcrest Medical Plaza.

    **This is not an inclusive list of all programs and eligibility of some programs depends on child’s medical condition, family income and other factors. For questions or further information, contact Maureen Ardis, RN, Spina Bifida Clinic Coordinator at (309) 624-5100 or by email, Maureen.A.Ardis@osfhealthcare.org.

    You can also contact any of these OSF Mission Partners:

    Michele Wawerski, MSW | (309) 495-6418 | michele.e.wawerski@osfhealthcare.org

    Lynne Lyle, RN | (309) 624-4000

    Julie Deibel, APN, NP-C, CNE | (309) 676-0766

    Julian Lin, MD | (309) 624-4000

    Churphena Reid, MD | (309) 624-5100

  • Spina Bifida Newsletter
  • Spina Bifida Newsletter January 2017 (003).pdf (PDF - 1010.0 KB)