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Family Support Subgroup Minutes 

Wednesday, November 23, 2011 | 9:00 AM

Meeting Location:  414 Stratton Office Building, Springfield, IL
Telephone:  (605) 562-3000

Members present

Jane Breen
Marcia Breese
Marybeth Lauderdale
Randy Shearburn
Tomi Minner
Elizabeth Gastelum

Charge of Committee and Identification of Issues

To look at what family supports are available in the State of Illinois for families of children with hearing loss and/or vision loss.

Discussion of Questions

  1. Does Illinois have a catalog of education resources/options available to parents of deaf or blind children?
    • Deaf children: There are several directories available. They are not distributed to parents. Rather a parent has to be proactive to seek them out. An exception to this is the directory from ISD Outreach - that directory is included in bags that are handed out to parents who register and attend their annual conference. Examples of some of the directories available in Illinois are:
      • ITHI Directory
      • IDHHC Parent Manual
      • CHOICES for Parents
      • IL Families for Hands and Voices
      • Guide by your Side
      • Early Intervention Outreach (name has changed from IL Hearing and Vision Connections)
    • Blind children: The subcommittee feels there is nothing consistent available. There are resources on the web. There is the directory from Early Intervention Outreach
    • Subcommittee member asked whether there is a commission or similar entity serving the blind? Identified was the Blind Council under DHS, but it is unknown if there is anything developed for parents of blind children. Michele Clyne of Project Reach is an authority on services of children who are blind and deaf/blind and would be a good addition to this subcommittee.
    • Issues: One problem with directories is that they become outdated very quickly and therefore must be constantly updated. Another issue is that there is no list of parents in the State to utilize in order to proactively send information. Unknown whether information is distributed once children fail the newborn hearing screening. Unknown if there is a similar screening for blind children at birth, but assumed that there is not and that children with vision loss are identified more randomly and at different ages. Children with hearing loss are also identified at different ages, but the newborn hearing screening serves to identify those born with hearing loss immediately after birth. Another issue is that many of the directories focus on school options and parents are really lacking information and resources for the birth to school age population.
  2. How does the State communicate with parents of deaf/blind children?
    • There are the outreach programs at ISD/ISVI. The problem they have is reaching children all over the State. Many children slip through the cracks
    • There is DSCC, but not all audiologists refer to DSCC. There was an attempt with introducing legislation to address getting information to parents. Need to follow up with Margaret Vaughn and Tom Ryder to see exactly what this was going to entail and what happened to it. Parents really need one place in the State that will communicate with them and follow up with them after a diagnosis that is able to give them resources. An invaluable person to the committee would be Gail Olson with IL Hearing and Vision Early Intervention Outreach (DHS). She works with early intervention for babies who are deaf, blind, or deaf/blind and is able to give more information to the subcommittee. Asked whether we also need someone from IDPH. Subcommittee members feel Gail Olson would be able to provide the necessary information regarding Newborn Hearing Screening and another person from IDPH.
    • One issue is that audiologists, optometrists, pediatricians, and medical professionals are the first person a parent typically deals with when learning that their child has a vision or hearing difference. The focus of the medical professionals is to fix the difference rather than provide information and resources on all the options for parents with children with vision and hearing differences.
    • Another issue is communicating with parents of children in underserved areas of the state. These children may be in programs which are not geared toward working with students with hearing loss, and may not get information.
  3. What can we learn from the Texas Registry?
    • The Texas Registry is an annual registration, on January 1st of each year, of children with IEPs that have been identified as having a vision or hearing loss. The Registry is easy and the registration is done by professionals who know what they are doing. Suggested that this be compared to the same other states the subcommittee for governance is studying which are AZ, MD, Texas, and FL to see exactly how their models work and the benefit of such models. Here in Illinois, one problem is that there is no way to track children with hearing loss or vision loss from the time of identification throughout their education. Another problem is children who do not have an IEP, and only have a 504 plan may not be identified also.
    • Suggested that the Registry should also include the registration of children identified through the newborn hearing screening and through other diagnosis prior to school. Should include early intervention services as well as school aged children.
    • Deaf Annals with Gaulladet does some sort of tracking -- voluntary.
  4. Are there parent support groups for ISD and ISVI student families?
    • There are parent support groups but they are not very active. They recently hired their own legislative liaison so they are more active than they have been in the past, but overall they are not very active. They actually function more as a parent-teacher group, like a PTA, than they do as a parent support group.
  5. What are the current outreach methods for reaching families?
    • ISD/ISVI/Hearing Vision Early Intervention Outreach: They reach out primarily to the IL Supervisors of the Hearing Impaired, but from there the information does not always reach families. Illinois Hands and Voices has started a program reaching out to families, but it is new and it is unsure how it is doing---guessed to be doing better in the Chicago area than downstate. A registry would help enormously with outreach methods for reaching families. There is some concern that others view the state schools as trying to “recruit” children, but this is not the case. They would like to be a resource capable of providing assistance.
  6. Is there a standard approach in the medical community for working with parents of deaf or blind children?
    • Believed to be a medical model.
  7. What kind of follow-up takes place after a hearing/vision newborn screen?
    • This is information Gail Olson could provide.
  8. What are the geographical disparities in support for parents of deaf or blind children in Illinois?
    • Marcia has a map - another committee member has a map as well - these will be updated and discussed at the next subcommittee meeting.

Main issue identified in IL: No one state agency or entity that follows a child from identification of hearing or vision difference through early intervention and then through their education. Many programs at a various state agencies such as Newborn Hearing Screening at IDPH, Early Intervention Services through DHS, and then the variety of deaf education programs throughout the state via local school districts, special education cooperatives, private schools, and the state schools for the deaf and the visually impaired. The state schools for the deaf and the visually impaired have outreach programs, but their ability to reach families is limited. In some other states, such as Texas, the state schools for the deaf seem to serve more as a school AND an outreach center for local schools, providing expertise in the education of children with hearing loss.

Next Steps

For next meeting:

  1. Elizabeth Gastelum will contact the Governor's Office regarding sending an invitation to Gail Olson and Michelle Clyne to serve on this subcommittee.
  2. Elizabeth will contact Margaret Vaughn and Tom Ryder, lobbyists, to follow up regarding information being given to parents by audiologists. If not, the committee can research assembling packets of information to give to audiologists for disseminating to parents.
  3. Marcia Breese will compare directories for parents of children who are deaf or hard of hearing.
  4. Jane Breen will conduct a survey to find out what information is given to parents of children who are visually impaired.
  5. Marcia and Marsha Schoth (ISVI) will update map of underserved areas of the state for educational programs for children with hearing and/or vision loss, with background.
  6. Jane Breen will review registries/child find methods in Texas, Maryland, Florida and Arizona.