ICC: Meeting Minutes

UTAH INTERAGENCY COORDINATING COUNCIL (ICC)
FOR INFANTS AND TODDLERS WITH SPECIAL NEEDS AND THEIR FAMILIES
Utah Department of Health, Division of Community and Family Health Services
44 North Medical Drive, Salt Lake City, Utah

September 20, 2002

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

The meeting commenced at 9:37 AM, conducted by Barb Fiechtl. Introductions were made. Telehealth site: St. George.

A MOTION was made by Dr. Fan Tait and seconded by Chris Giacovelli to accept the Minutes of May 10, 2002 as written. Motion carried unanimously.

1. Outgoing members Chris Giacovelli reported that some ICC members are no longer available to serve. Dr. Paul Ebbert, Barbara Johnson, and Maree Webb each gave us valuable information and contributions while they served the ICC. Chris thanked Maree and presented her with a plaque. Plaques will be sent to Dr. Ebbert and Barbara Johnson, thanking them for their contributions.

2. New recruits Chris is working on recruiting new agency representatives. She has contacted DCFS head, Richard Anderson, to see if he can recommend someone. Alison Lisano, head of the Governor's Council for People with Disabilities is also going to get back to her with a name from that group. We are looking for another medical professional such as a PT or OT. Another contact, Dr. Eggert, a Neonatologist, may be able to recommend someone from the Ogden area.

Grants Update Dr. Fan Tait provided an overview of eight new grants within the Bureau.

1. Newborn Hearing Screening: Three Grants One is from CDC, one is from Maternal/Child Health, and one looks at the follow-up system, including how much it costs, the funding for follow-up, and presenting this information nationally to provide a model on follow-up. It also looks at the genetics of hearing loss. We screen around 98% of newborns now, and about 90% pass the first time. With hearing loss that occurs at birth, there is a significant genetic component. We have a grant that looks at infants with confirmed hearing loss, who are referred to geneticist Dr. John Kerry at the U of U, so we can counsel the families and, ultimately, prevent hearing loss. Dr. Jim Bayle is looking at how infants who have CMV at birth often develop hearing loss later. The question is, are we missing some of the kids who have infant hearing loss because we are not looking at CMV? We are testing a pilot to look at the urine of the infants who fail their hearing test and/or their blood to see if we can identify this.

2. Birth Defects Surveillance Grant Through Marcia Feldcamp and Lynn Martinez we've also been fortunate to get a grant of $5 million over five years. With the University of Utah and Utah State, we become one of eleven centers nationally looking at birth defects. The long-term outcome is to help prevent and treat birth defects.

3. Traumatic Brain Injury (TBI) Grant We had two years of TBI planning which we'll finish up this fall. Our advisory committee has done needs assessment across the whole state with close to 500 responses of TBI families, we've looked at 40 different agencies and we've gotten significant feedback from providers. Because of the grant we've established satellite support groups outside the Wasatch front. The plan is to take this data and develop an action plan, then apply for the implementation grant for the next three years.

4. Genetics Implementation Grant This follows a genetics planning grant and is a 3-year deal that looks at 1) data and how we share that information, 2) confidentiality, and 3) re-establishing and expanding the genetics advisory committee for the state. There is an explosion regarding genetics in every field, it's critical that we have input from families, patients, experts, and consumers to look at these issues and direct us in using funding and information. Part of that is the issue of the ethics of genetics and what newborn blood screening means. A population screening subcommittee helps decide how to screen. We look at four factors in Utah's screening, some states look at 20. It varies widely.

4. Medical Home Grant Any grants we write now we try to collaborate with the other grants we already have. The genetics grant piggybacks on this one. Next meeting Fan will show the ICC the medical home website. Type in the URL medhome.med.utah.edu to access the site, but realize that it is a prototype. Right now there are various modules, the most complete being the CP one. Each module has information for downloading. For example, if your child has CP you can look at the 15 questions you should ask your physician or get information on behavioral modification. It gives approaches families and physicians can use. There is ongoing discussion on whether to give it to the public when it's not perfect or wait until it is. Maree asked whether it is set up to be accessible to persons with disabilities. Fan said even though we have a lot of things families can use, the site is for the primary care provider in partnership and collaboration with the family.

So now with our grants we have funding to add the newborn blood screening issues modules. Education has been wonderful to fund and do the modules for the education segment. We got some supplemental funding from Maternal/Child Health to do the newborn hearing screening module. As we add other things, there will ultimately be a way to log in and earn CNB credits, and a feedback mechanism to evaluate the information. We're looking for additional, ongoing funding from the National Library of Medicine. There's no need for other states to repeat our efforts. They can use what we've done.

5. Leadership Education in Neural Development Grant. AKA the LEND program: 12 disciplines are involved in this 5-year grant: OT/PT, speech, nursing, medicine, Special Ed, Audiology, Psychology, Dentistry, Social Work, Families, Nutrition, and Business. This is an exciting program, with coordinators from the university system who mentor trainees. Trainees come on for a year in all areas. It entails 300 hours/$5000 dollars, is a fair amount of work but you learn a lot. We are looking at graduate-level trainees or above. For example, there is a speech language pathologist, also a Wyoming state representative who brings a lot of insight. 100 hours of the module is lectures, 100 hours research, and 100 hours clinical work. They have to have a project that they present at the end of the year and use what they learn to effect systems change.

Brenda Broadbent explained that NECTAC is the National Early Childhood Technical Assistance Center with an OSEP-funded grant to provide technical assistance and training for state-level endeavors. Susan and Brenda and NECTAC people were endeavoring to find a common issue to work on together to come up with some sort of systems change that would meet the needs of both Parts B and C. Together they identified a common issue-serving young children in natural environments, and as they get older, in the least-restrictive environment. In August various agencies, school districts, private programs, parents, and Head Start met together and spent a day talking about issues, barriers, and things that are working. In September the group had a day and a half meeting to really delve in and come up with a plan for Utah.

One topic the group will be looking at is the higher ed programs that are training our personnel to ensure they are providing experiences for the students to be in natural environments and providing services in a multitude of service delivery patterns, not just one. For example, preschool special ed teachers are being hired before they finish their programs because there is such a shortage that they are getting their practicum hours right in the classroom as teachers. Another issue is defining what a natural environment actually is. It looks different in different communities, because community standards vary. Where are the typically developing peers? In some communities they are at home, some are in private preschools. How do we provide training on this to those already working in the field? Is it just coming up with good definitions? Technical assistance guidance? The community infrastructure-local early intervention, private preschools, daycare centers, in-home centers, Head Start, the providers that are going to be implementing these initiatives-what are there needs? Some are ahead of others. The solution can't be a one-size fits all model.

Meredith Mannebach reported how she and Janet Wade wrote a grant to the Governor's Council For People With Disabilities to have an out of state trainers group come and train a local planning group and caregivers on respite. The training objective is to help parents understand how to articulate to providers the needs of their child. Providers were there to learn how to ask questions and listen. Very professional and important parent, caregiver, and training manuals were included in the training. The presenters were wonderful. Janet and Meredith hoped to conduct three more workshops across the state, but didn't get the grant to extend the contract. They can still offer the workshop to groups if they want to pay for it. The Utah State Family Council has a parent network for DSPD, and they might partner with their mini-conferences across the state in doing a revised version of this. Janet stated that it was a very moving workshop with very high evaluations. There is a core team anxious to teach other people. Presenting this material to others was one of the requirements of the workshop trainers.

Update on Funding Issues Susan gave an overview of early intervention funding needs and how the system works. In Utah, 15 statewide contracted agencies are funded to provide all services for early intervention. In addition, Baby Watch supports training, credentialing, and teaming with local early intervention.providers for the USDB's PIP; they get separate funding from the legislature for actual service delivery. We can't keep waiting lists and we can't leave out rural areas. Last year we provided services for a total of 6000 children. For July, there is a count of 3000 current children. Funding needs grow by about a million dollars each year, because for the last four years our caseload growth has been about 10% per year. Reasons for growth are that we must serve all the children who are eligible, and we've done a good job with Child Find, plus the birth rate and in-migration are growing. There's a federal benchmark to serve 2% of the population. Utah is contracting for a bit over 2%. The 2000 Census counted 129,200 children birth to three. It is estimated that there will be 136,815 children birth to three in 2004.

Part C receives federal fund allocations on a formula based on 0 - 3 population, and Utah has gotten an increase each year because our population has grown. Then we have a state allocation-a little more than federal funds. We also use Medicaid funds for those children who qualify. Those are our three funding sources.

We contract for services every July and the current fiscal year is for 2940 children. To maintain those contracts at the same level next year we will need an additional $1,351,474. This is not allowing for growth. Nor have we increased the amount spent per child over the last several years, which averages out to about $4,100 per child per year. That amount funds all that goes on in early intervention including administration, and assumes that we will get another $1,000,000 based on growth. The amount we still need is what we call the budget shortfall. We are already seeing more children than before. The contract formula is based on averages for the previous years. The budget shortfall is based on additional need in supporting all programs to serve all children in Utah. We must lay out exactly what we need just to maintain where we are. Part of this increased funding need is from growth, some is based on the fact that we've had some carryover in years past that we could put into contracts for the coming years. We don't have that now.

Department of Health Funding Process George Delavan explained that when a program anticipates a need, it submits a request. The DOH looks at the requests and decides which will submitted to the governor's office. There are guidelines that all the departments get about what kinds of requests they can pass along. This year is restrictive because the tax revenues are low. In mid-November the revenue projections will come out, and those are what the legislature and governor will look at to decide on spending. All the departments will turn in their prioritized list, and negotiate with the governor's office, who, in mid-December, will come out with a recommended budget. The legislature can use that list of recommendations however they want, and make their own decisions regarding what they are going to fund. In a week the DOH is going to submit its finalized list. It would be important for the ICC, as advocates, to let the governor and legislature know how important this funding is. Fan noted that this is not a surprise to us. Utah has been at the forefront of looking at all of the possibilities for funding, including bringing in national experts several years ago. The finance subcommittee looked for solutions including insurance, parent fees and more. Ultimately, we need funding from the legislature. We are not hoarding. The last legislative session we didn't get an increase. That's why there is now no carryover. We have enough to get through June. We are anticipating growth. The positive side is that the DOH is supportive.

GleeAnn is collecting letters and stories from families and working on educating legislators and the governor's office. Kris reminded the group to look at who is running for office right now and what they believe in. Fan said, don't just vote, there are those out there who are strong advocates who need support. We need friends on both sides of the aisle.

Planning The Finance Committee has talked in the past about insurance and wondered what other options we should consider down the road. They'll be looking at parent fees again. We either need a way to implement them or explain why they don't work. We'd like to keep the program the same but we need to plan for "what ifs" which means revisiting parent fees, billing insurance, and changing eligibility. Our programs can't continue with a deficit of over two million. The Finance Committee looked at setting up a foundation, changing Medicaid and so forth. We came to certain walls in those areas. We'll keep all these things on the drawing board.

There's an Eligibility Task Force that comprises early intervention providers and is a separate issue from funding. The task force is looking at whether we are keeping children in for the right amount of time, exiting them appropriately, and how we are documenting that. There is a new eligibility intake form that all providers are now using. It gives us information that was not in our hands before. The month of April we looked at all the data. We found that the majority of children we are serving are in the more severe category. Brenda remarked that Part B finds that some young children haven't grown into their disabilities yet, and that changing eligibility, and waiting for signs of significant delay by 2nd or 3rd grade won't save money in the long term.

Parent subcommittee:
Legislative Activities Kris Fawson presented advocacy training this month that was video-conferenced to five sites across the state. She emphasized that providers go back to their families and have them write their letters to their legislators. Our role is to educate legislators. Last year in Davis County, they invited the legislators to lunch and discovered that they had no idea what our problems were. Susan said that Orrin Hatch has a disability issues committee she has attended along with the Part B staff and Senator Hatch's staff teleconferences from DC.

GleeAnn Clayton has met with legislators in multiple areas. She passed around a scrapbook of letters and stories for our legislators. We are educating them, and also candidates. The Parent subcommittee is forming subgroups to better advocate, contacting parents in rural areas to educate them on how to push their issues locally. The website to find a legislator is lcpdutah.org. We need to put a face on these people for the legislature to identify with. Kris said, "Take your kids to the legislator's office when you go. Invite them to your home, go to theirs; this is where education comes in. All of the legislators have influence, even if they are not on the committee."

Listserve Bulletin Board Diana Sagers reported increased participation. It's only been a year, and now there are 41 members. Diana also put her story on the listserve as an example. It would help if everyone would put their stories up. Families can practice by doing their stories and letting someone else take them to the legislature. Many feel more comfortable if all they have to do is send an email or make a call. The bulletin board site is utahkids@yahoogroups.com.

Parent Leadership Training GleeAnn reported on the training in May in Park City. The attendees (Jill, Marcela, GleeAnn, Diana, and Barb) set up a state plan. GleeAnn is over legislative issues and funding. Barb is on building relationships with providers, Marcela's area is multicultural inclusion, and Jill doing a VIP "Valued and Influential Parent" program. The next parent subcommittee meeting is November 13 at 1:30pm. Janet will inform providers about the parent meetings and get a staff member go to support the parents when there is videoconferencing happening. The technology didn't work very well last time, but we just keep going. When parents attend and pass on the information there is a snowball effect.

Expanding Options for Infant Toddler Mental Health Subcommittee:
Janet Wade reported on behalf of Kristina Hindert, who was absent. The committee is active and their report is now on the Baby Watch website. The work hasn't ended. Members met on Saturday and that committee is moving to form a Utah affiliate of the World Association For Infant Mental Health, writing bylaws, and inviting key people onto the board. The huge listserve of people who've worked so hard through the ICC on the Infant Mental Health initiative last year will be important to this association, hopefully driving and keeping itself going.

Out of the recommendations from the Expanding Options Subcommittee came the initiative to define a unified approach to infant mental health. The objective is to write preferred practice guidelines for birth to five. The group comprises the Expanding Options Subcommittee and new members from agencies and the mental health services community, and has been divided into three parts looking at Promotion, Prevention, and Intervention. Since that meeting a lot more folks have been invited onto the three workgroups and now there is representation for every agency serving children zero to five. They are meeting at the Cannon building on September 27. The hope is to develop this unified approach so that the preferred practice guidelines will be embedded into the principles of all those practicing in the field of mental health. Janet also handed out recently printed resource guides for infant toddler mental health services.

Susan said that the ICC Annual Report to the governor is usually due December 1. The time period is for 18 months, ending 9/30/2002. OSEP will be changing the format and extending the deadline. Baby Watch staff helps the ICC with formatting and content, but the report actually comes from the ICC.

November 15, 2002 at 9:30 AM at DOH Children with Special Health Care Needs, 44 North Medical Drive, Salt Lake City, Utah.

_____________________________________________
Ellen Parrish, Executive Secretary for ICC