Skip to Main Content

Family Support Minutes 

Wednesday, December 14, 2011 | 9:00 AM

Location: 414 Stratton Office Building; Springfield
Teleconference: (605) 562-3000

Members Present

Jane Breen
Marcia Breese
Marybeth Lauderdale
Randy Shearburn
Tomi Miner
Patti Chang
Gail Olson
Elizabeth Gastelum

Administrative Items

The Open Meetings Act requires us to establish a schedule of our regular meetings for the calendar year. We do not know the 2012 schedule for the Working Group. Once that schedule is established then we will schedule our meetings accordingly. Approval of the minutes from the last meeting postponed to the next meeting.

Follow up on Action Items from Previous Meeting

  1. Invitation to Gail Olson and Michelle Clyne to serve on this subcommittee in order to learn more about the Newborn Hearing Screening/Early Intervention and Blind Services. (Elizabeth Gastelum)
    • At this time awaiting confirmation from the Governor’s Office.
    • Gail Olson provided a summary of the newborn hearing process and follow up, explaining how gaps in the service occur.
  2. Prior lobbying efforts regarding information to parents with the Illinois Association of Ophthalmology and the Illinois Academy of Audiology. (Elizabeth Gastelum)
    • Margaret Vaughn responded to our inquiry. She had the idea last legislative session for the ear and eye doctors to provide info to parents or guardians about ISD and ISVI. The idea was met with opposition from the Illinois State Medical Society and the specialty societies that represent these professions so it was not introduced as legislation. Instead, she coordinated a meeting with Representative Watson and the executive directors and lobbyists from these groups along with the Superintendent of ISD and ISVI. The groups were very interested in the schools and they were provided with brochures and other materials. There needs to be a stronger relationship between these professional organizations and the schools, but this should probably take the form of an initiative that is led by someone who is employed by the schools or the State.
  3. Comparison of directories for parents of children who are deaf or hard of hearing available in the State of Illinois. (Marcia Breese)
    • This project is ongoing. It is a complex project and because there has not been much time between our last meeting and this meeting, we will revisit this issue at a future meeting.
  4. Survey on what information is given to parents of children who are visually impaired (Jane Breen)
    • This project is ongoing. We will revisit this issue at a future meeting.
  5. Update of map of underserved areas of the state for educational programs for children with hearing and/or vision loss (Marcia Breese and Marsha Schoth (ISVI))
    • A survey was sent out and we are awaiting responses. Hopefully we will get responses by December 31st, but probable some responses will come in after the holidays.
  6. Review registries/child-find methods in Texas, Maryland, Florida and Arizona. (Jane Breen)
    • This project is ongoing. We will revisit this issue at a future meeting.

New Discussion Items

  1. 504 vs. IDEA
    • Some children in the public school system have 504 plans under the Rehabilitation Act rather than Individualized Education Plans under the Individuals with Disabilities Education Act. 504 plans tend to address the issue of communication access, rather than special educational objectives---although this is not entirely across the board how it works. It was mentioned in a prior meeting of the main working group that students with 504 plans do not appear in the numbers that ISBE has for students with hearing or visual differences as those are based on IEPS and do not include students with 504 plans.
    • ISD and ISVI do not have students with 504 plans. All students have IEPs.
    • ISD and ISVI are viewed as the residential option under the continuum of placements under the Individuals with Disabilities Education Act.
    • Schools with 504 students may not be turning to ISD and ISVI for educational guidance because they may not view their 504 students as special education students and may have the perspective that ISD and ISVI are special education or rehabilitative institutions. Parents who believe their child simply needs communication access to the regular curriculum may also have similar hesitations.
    • Issue was raised as to whether schools or parents prefer the 504 plan rather than an IEP. Illinois Hands and Voices, a parent organization provides substantial information to parents on 504 versus IEP and it was discussed whether desiring a 504 versus an IEP plan is becoming something that is a parent-driven movement to prevent their children from being “special education” students. Some members of the committee felt that it was parent-driven, but a majority of the members felt that writing a 504 plan is something that is school-driven.
    • Legally speaking, federal courts across the country have tended to interpret 504 and IDEA has requiring the same standard, even though the language of 504 has a much more “civil rights” ring to it than the language of IDEA. Essentially a 504 plan that addresses access to the regular curriculum of a public school achieves the same objective as an IEP that requires related services (such as interpreters) in order for the student to access the regular curriculum of a public school but that would then have no other educational goals. Because of how the federal courts have interpreted these two laws as having the same standard, despite some difference in language, these two different documents under two different federal laws are essentially the exact same thing. Some parents have challenged their child’s access to communication in the educational setting under Title II of the ADA. There is one federal court (Puerto Rico) that has suggested that Title II of the ADA possesses a different standard (higher) than that of 504 or IDEA.
    • There are federal funding differences between a student with a 504 plan and a student with an IEP.
    • It is difficult for outreach at ISD and ISVI to know where the 504 students are—these students do not seem to be tracked.
    • 504 students represent an anticipated potential gap in reaching families.
  2. Potential redefinition of ISD and ISVI
    • Although there seems to be agreement with the majority of members of the main working group that ISD and ISVI are to also serve in the capacity of a centralized information point for families, the potential redefinition of these two entities, without knowing what redefinition will occur, requires this subcommittee to address other entities and the pros and cons of those agencies serving in that capacity.
  3. Central Information Point for Families
    • ISD/ISVI (as they exist today)
      1. Pro: They have the greatest number of professionals specialized in the education of these two low incidence population groups.
      2. Con: Being classified as a rehabilitative school and the view/opinions of some that it is a school of “last resort” under IDEA (when really the educational options are supposed to be viewed as a continuum). No real ability to find students, other than through contacting special education supervisors for each school district or cooperative. Some have the belief that ISD/ISVI have an agenda to recruit, when the agenda is to assist others to serve these populations.
    • ISBE
      1. Pro: It is the education agency of the State and it has the ability to track the numbers and locations of students based on IEPs.
      2. Con: Hearing and vision differences are low incidence populations and could be lost within the larger agency. ISBE is not responsible for children prior to the age of 3 and that is the age when many parents need the most information (for hearing differences) because of the Newborn Hearing Screening.
    • DHS
      1. Pro: Early Intervention Services for both populations.
      2. Con: Not education related. No services for school-aged children.
    • IDHHC
      1. Pro: Its statutory mandates require the Commission to provide information on a state-wide level and also to coordinate with entities providing education to the deaf.
      2. Con: It is not a deaf & blind commission so this does not serve the blind community. Could recommend changing the commission to a deaf and blind commission; however, this may not be advisable. Unsure the Commission would be willing to assume the role as a central information point for families.
  4. Brainstorming: If a program were created specifically to serve as the central information point for families with children with hearing or vision differences, what would that entity require to best serve families in the State?

Next Meeting

The next meeting, and all meetings for the coming calendar year, will be determined after the larger Working Group's meeting in January.