Related Links

  • CHARGE Syndrome Foundation The mission of the CHARGE Syndrome Foundation: We lead and partner to improve the lives of people with CHARGE syndrome locally, nationally and internationally through outreach, education, and research. Provide a broad network of support to individuals, families and professionals. Engage in knowledge acquisition, development and dissemination. Promote innovative scientific and clinical advancements. Champion the lifelong potential of people with CHARGE syndrome
  • Chicago Hearing Society (CHS) ICanConnect and DeafBlind Program
      DeafBlind Community Services
    • Provide advocacy for access and services in the intermediate Chicagoland region
    • Develop independent living skills
    • Support tactile instruction and American Sign Language skills
    • Educate community on the needs of the DeafBlind and Low Vision Community
    • Support service providers with training and resources related to all aspects of DeafBlind access
    • Community Outreach and Education related to the DeafBlind Community
      iCanConnect (ICC – NDBEDP) National DeafBlind Equipment Distribution Program
    • Free equipment and training for individuals with vision and hearing loss in the State of Illinois who meet the federal disability and income guidelines.
    • Each consumer receives an individualized assessment to ensure they are fitted with the best equipment solutions.
    • Equipment can include access to smartphones, tablets, computers, braille displays and more.
  • DRS Illinois Department of Human Services - Office of Rehabilitation Services (ORS). DHS's Division of Rehabilitation Services is the state's lead agency serving individuals with disabilities. DRS works in partnership with people with disabilities and their families to assist them in making informed choices to achieve full community participation through employment, education, and independent living opportunities.
  • Helen Keller National Center Authorized by an Act of Congress in 1967, the Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC) is a national rehabilitation program serving youth and adults who are deaf-blind.
  • Illinois Advocates for the DeafBlind is a membership group for family members and others connected to individuals who are DeafBlind. The group is dedicated to protecting the rights and advocating for the needs of all individuals with deafblindness. It does not have a website, but does have a Facebook page. The membership flyer can be found here.
  • Illinois School for the Deaf Outreach Program ISD's outreach services are free and available to parents, teachers, students, and educational personnel who work with children who are deaf or hard of hearing in Illinois. They offer the following services:
    • Training on topics associated with hearing loss
    • Consultations and technical assistance
    • Parent conferences in northern, central, and southern Illinois
    • Annual conference for educational personnel
    • Assessments to identify educational and vocational needs
    • Cochlear Implant support
  • Illinois Service Resource Center The Illinois Service Resource Center provides behavior support for students who are deaf, hard of hearing, or visually impaired in Illinois. Behavior support can be for individual students with challenges, or at the preventive level with classrooms or school programs. ISRC serves students with hearing loss regardless of communication mode. ISRC provides free training, onsite assistance and resources for parents and educators of students who are deaf or hard of hearing. ISRC team members visit homes and schools to work with families and educators in developing positive behavior support plans for DHH students in need of intensive level supports. ISRC team members work with DHH programs and classrooms to develop positive behavior support plans that teach appropriate expected behaviors for all students.
  • Illinois State Board of Education (ISBE) Special Education Deaf, Hard-of-Hearing, Deaf-Blind, Visually Impaired. The ISBE Special Education informational web page for educators regarding students who are Deaf, Hard of Hearing, Deaf-Blind, or Visually impaired has sections with resources, guidance documents, and other important information related to low-incidence disabilities.
  • National Center on Deaf-Blindness NCDB is part of a network of projects for children and youth with deaf-blindness (birth through 21) that includes state deaf-blind projects in every state, as well as Puerto Rico, the District of Columbia, the Pacific Basin, and the Virgin Islands. They are funded by the U.S. Department of Education. Their primary mission is to support state deaf-blind projects as they assist educators, agencies, and organizations to acquire the knowledge and skills needed to help children with deaf-blindness learn, access the general education curriculum, and successfully transition to adult life.
  • NORD National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
  • Office of Special Education Programs (OSEP) OSEP is dedicated to improving results for infants, toddlers, children and youth with disabilities ages birth through 21 by providing leadership and financial support to assist states and local districts.
  • Perkins School for the Blind Through Perkins Core Programs and Services, they work to fulfill a mission of serving children and young adults with multiple disabilities and their families around the globe, as well as the educators, professionals and researchers who support them, by focusing on innovation and excellence in educational services, accessibility and professional development. Services include Perkins eLearning, with professional development opportunities that come in a range of formats.
  • Usher Syndrome Coalition: The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.