Attendance (alphabetical): Brenda Broadbent, GleeAnn Clayton, Pamela Colson, Barb Fiechtl, Chris Giacovelli, Judi Nielsen, Cathy Nelson, Susan Ord, Gina Pola-Money, Marcela Rafide, Diana Sagers, Fan Tait, and Shelley Wiseman.
Excused Absences: Caroline Bass, Trisha Beck, Kris Fawson, Colleen Fitzgerald, Timothy Floyd, Sherry Hancock, Kristina Hindert, and Jill Oberndorfer.
Absentees: Jill Adams, Meredith Mannebach.
Visitors Present: Adrienne Akers, George Delavan, Terry Johnson, Sue Olsen, Chris Thompson
Baby Watch Staff: Lori Brady, (equipment),Vanya Mabey, Kimberly Morris, Ellen Parrish (minutes).

I. WELCOME/INTRODUCTIONS. The meeting commenced at 9:44 AM, conducted by Barbara Fiechtl. Introductions were made.

II. APPROVAL OF MINUTES. A MOTION was made by GleeAnn Clayton and seconded by Fan Tait to accept the Minutes of September 20, 2002 as written. Motion carried unanimously.

III. LEADERSHIP TEAM REPORT

1. Incoming members. Chris Giacovelli reported on new ICC appointments. Johna Larson is replacing Maree Webb from the Governor's Council for People with Disabilities. She is also a pediatric NICU nurse, and mother of three adopted children with special needs. Patty Van Wagoner, DCFS Deputy Director, will replace Dr. Paul Ebbert as an agency representative. Lynette Rasmussen, DWS Child Care Director, is replacing Colleen Fitzgerald. The paperwork for these new members should be ready for approval by the Jan. 17th meeting.
2. ICC Conference and OSEP seminar report. Chris reported on the conference that she, Susan, and GleeAnn attended in Washington DC. Chris and GleeAnn attended an intensive ICC seminar all day Sunday and discovered there is a wide range of how ICCs are run. One state had a paid staff of 25 for their ICC alone. Many states have a minimal paid staff with the chair employed half or full time. By not having a paid staff we don't get quite as much. Most ICCs are quite involved in making decisions, advising and informing the lead agencies, and hearing concerns of those providers on the front lines, serving the kids. When Chris talked to our provider's group, they said they would like to offer more feedback to the ICC on what's happening in their programs. Chris suggested having information from a provider on the ICC agenda, maybe not every time, but as needed.

IV. PARENT SUBCOMMITTEE REPORT

1. Parent Tri-chair. GleeAnn Clayton explained that at the November 13 meeting it was proposed that the parent subcommittee create a tri-chair much like the regular ICC has, to help with sharing the responsibilities and take some of the pressure off present chair, Jill Adams.
   
2. Parent Workgroups. In Washington, GleeAnn talked with several ICCs about how they formed and set up parent workgroups. They've found workgroups to be effective in helping to advise and assist, a good way to bring back something to the ICC. Our Parent committee established five working groups at the May national ICC Summit in Park City. GleeAnn's goal is for these workgroups to gather and organize information, then take it back to the programs all over Utah. Once a project is completed the groups can be dissolved. This is an opportunity for the parents to be more influential, more expressive about what goes on here, and better informed. GleeAnn's challenge to the providers is to get parents more involved.
   
3. Legislative Coalition Conference. It was powerful to realize that disability issues impact everyone. There's always somebody who knows somebody taking care of someone. This takes away the feelings of isolation, that "this is only happening to me". It was a joint meeting regarding adult/children's health. They took the fact sheet into the small group meeting and talked. There was a feeling among those there that children's needs were overshadowed by those of adults, so next year there will be a change.
   
4. Next parent meeting. Parents will meet again on January 8, 2002, at 1:30 PM.

V. POSSIBLE CHANGES TO THE 619 PROGRAM

Brenda Broadbent, from Utah State Office of Education represents the Mountain Plains Region for the 619 coordinators, reported on the quarterly phone conference with OSEP. The gist is that they believe that current programs will not stay the same when IDEA is reauthorized. Right now we have a birth-to-3, then the 3-to-21 system. OSEP is suggesting either a birth-to-5 and a 6-to-21 or a birth-to-21 program. We have an opportunity in our state to voice feedback regarding our preferences. If it's a birth-to-21 system could a state still opt for separate lead agencies? Would it make a difference to families if it were one system or separated into two systems, or if we change the age group break? If anyone has input, the timeline is before January.
Some states are considering discontinuing Part C. In Oregon, because of budget cuts, their legislature is looking at opting out. In Montana, parents and providers are advocating for keeping the program, but the agency suggested to the governor that it not be in the budget. This may be a way of getting the attention they need to get funding. There is a feeling nationally, that Part C and 619 programs must come together and speak with one voice.
The question is, what is the cost to the people who are receiving services? When we merge, someone is going to lose. Right now, we have certain eligibility criteria, while Part B has other guidelines. Sometimes a merge can strengthen both programs, but it depends on what it takes to provide the services. 619's current poll shows the majority of the states saying that IDEA should be Birth-to-21, and it should be up to states to decide how that should look.

VI. OPENING UTAH'S DOORS UPDATE

Adrienne Akers from Utah State University updated the ICC on her project, Opening Utah's Doors and demonstrated the application process prototype. The purpose of the grant, funded through Maternal and Child Health Services, is to create a way states can organize services so people can use them more easily. The Opening Doors Project is focusing on one of the objectives of the grant-a common application process. They have developed a Web-based application system for the eligibility process so that families don't have to fill out multiple applications in multiple locations. Another goal is minimizing the overlap of service coordination that sometimes occurs when families receive services from multiple agencies. They are piloting the system in Provo and Vernal in January. Along with early intervention, families will be able to access applications for Medicaid, Workforce Services, WIC, food stamps, Office of Child Care, CSCHN, and Baby Your Baby.

VII. HEALTH DEPARTMENT REPORT FOR CSHCN

Dr. Fan Tait demonstrated the Medical Home website. (http://medhome.med.utah.edu). She explained which areas are under construction and showed the committee pages that are completed. There will be things added, for example, information for families, education and legal issues such as IFSPs, screening and prevention, and coding, to ensure doctors code appropriately. There is funding for seven more modules. She showed the committee the page on Cerebral Palsy which has links to the most recent articles, and lists CP issues. Parents can also access and use the clinical assessments area. The website is a tool doctors can use to give additional information to families at the point of referral.

VIII. BABY WATCH BUDGET UPDATE REPORT

Susan Ord provided a handout about the purposes of Part C and budget scenarios. The handout explained early intervention's needed budget increases to maintain contracts at the current level, and allow for expected growth, which comes to approximately 2.3 million. Another chart based on eligibility data from April and September, broke out the levels of delay. With a monthly average of 210 children, 80% were listed as a severe delay. To qualify as mild, they should test out with a standard deviation of 1.0 in three areas, for a moderate level, they need a delay a standard deviation of 1.5 in two area, for severe, a delay in one area with a standard deviation of 2.

1. Funding scenarios. Susan outlined and explained the ramifications of: 1.) full funding from the legislature, 2.) funding for maintenance but no growth, and 3.) no funding increase. If we get partial funding, ramifications may include changing eligibility to exclude 300 children from our caseload starting in July of 2003, possibly by eliminating children born prematurely who currently are automatically qualified, and eliminating the mild delay category. If we don't get any money from the legislature, that could mean about 700 children would have to be eliminated, around 24%. Possible scenarios include providers could take greater cuts to their contracts, children with mild and moderate delays could be eliminated, parent fees could have to be instituted, and possibly insurance could be billed.
   Diana Sagers, who sits on the Health Advisory Committee, told about their recent discussion on budgets and what programs are federally mandated. Early intervention is not. Everything that is cut affects so many other things. Early intervention helps the families of children with severe delays learn how best to care for them. The children with mild delays can be brought up to the level of their peers. It's hard to say that eliminating the children in the mild category is the right choice.
   
2. Timing is everything. If we change our state plan, before we get funds next July we have to conduct public hearings for the changes which includes an open comment period of 60 days, following a 30 day notification. The hearings should take place in January, so changes can be included in our state plan submitted in March to OSEP. We plan to move forward now, rather than wait and see what the legislature does regarding funding.
   
3. The Governor's Budget Process. George Delavan explained how the governor's budget works. It's in the final process, it must be made public by mid-December. One factor that determines what ends up in the governor's budget is the revenue projection which currently does not look good. All the state programs are on notice to prepare for the possibility of budget cuts.
   The questions the DOH has for the ICC are: A.) can you suggest any other ways to try to deal with this situation? B.) do you feel instituting parent fees is worth the effort to try to increase revenues so maybe we won't have to cut families from the program? C.).) What sequencing do you think we should go through in taking budget cutting measures (e.g. cutting the children with mild delays first, then parent fees, then, if it gets worse, cutting the moderate cases?)
   
4. Billing Insurance. GleeAnn said many of the parents of children with mild delays she talked with would rather pay parent fees than bill insurance. It's a concern that families will have to wait for milder delays to become more severe before receiving services. The parents would rather pay than -not qualify for services in the mild category. It seems that when parents know about the lack of sufficient funding, they are more willing to pay fees rather than lose services. Family Voices did an informal survey on billing insurance and the national trend is that insurers are reducing coverage. Families are worried that adding one more thing to their insurance could create problems. Early intervention would be a hard thing to sell to insurance.
   
5. Parent fees. Several years ago when first instituted, parent fees were cost more to process than the money that was collected The finance committee task force will reconvene to study the issue of setting the fee and reassess the requirements. Previously, the legislature mandated parent fees, but few families actually were required to pay. The finance subcommittee will look at all the issues surrounding parent fees and report back to the ICC at the January meeting.
   Shelly Wiseman suggested an actuary who might crunch the numbers to help figure out what the actual cost of service is.
   The 619 program will be effected if eligibility for Part C is changed. GleeAnn suggested using this same argument when talking to the legislators. One way or the other it's going to come out of the budget. A suggestion to request a PTA or UEA representative participate on the ICC was made.
   The first choice is to continue to lobby for the necessary funding to maintain the program. The Finance committee will look at all the funding issues and develop a parent fee policy, before the January 17th ICC meeting The public hearings will be scheduled for the last two weeks of January.

IX. NEXT SCHEDULED ICC MEETING. January 17, 2002 at 9:30 AM at DOH Children with Special Health Care Needs, 44 North Medical Drive, Salt Lake City, Utah.

X. ADJOURNMENT. Barbara Fiechtl adjourned the meeting at 12:09 PM.

APPROVED AS TO FORM:

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Barbara Fiechtl, Chair for ICC

MINUTES SUBMITTED BY:

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Ellen Parrish, Executive Secretary for ICC