MINUTES OF THE 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

March 19, 2004

Attendance (alphabetical):  Cheryl Alexander, Caroline Bass (via video), Representative Calvin Bird, GleeAnn Clayton, Mary Lou Emerson, Barbara Fiechtl, Kristina Hindert, Debbie Justice, Nancy Murphy, Cathy Nelson, Judi Nielsen, Connie Nink, Jill Oberndorfer, Susan Ord, Gina Pola-Money, Marcela Rafide, Krissie Summerhays, Fan Tait, Mark Valentine, and Patti Van Wagoner.
Excused Absences: Chris Giacovelli, Sherry Hancock and Lynette Rasmussen
Absentees:  Kris Fawson
Visitors Present:  Joyce Dolcourt and Meredith Mannebach
Baby Watch Staff:  Patrice Isabella, Vanya Mabey, Kimberly Morris, Ellen Parrish (minutes), and Janet Wade.

I.          WELCOME/INTRODUCTIONS.  The meeting commenced at 9:37 AM, conducted by Barbara Fiechtl. Introductions were made. 

II.         MINUTES.    A MOTION made by Judi Nielsen and seconded by Cathy Nelson to accept the Minutes of January 16, 2004 as written passed unanimously. 

III.        LEADERSHIP TEAM report.

1.         Membership update.    Barb updated the ICC on changes in membership. Tim Floyd has moved to California and Diana Sagers is expecting a child and has resigned.  Meredith Mannebach was promoted to the Executive Director’s Office in the Department of Human Services.  Caroline Bass is now an administrator at Dixie Regional Medical Center, but will finish her term.  We welcome two new agency representatives to the ICC.  Krissie Summerhays is Coordinator of Quality Management and Constituent Services for DSPD, and Mary Lou Emerson is Assistant Director of the Division of Substance Abuse and Mental Health.

2.         Call for Tri-chair nominations.    Each May one member of the three-member tri-chair rotates off and a new member comes on.  This year, Chris Giacovelli’s term will end, so we need nominations for a vote at the May meeting.  This person should be willing to make a three-year commitment to serve on the tri-chair. Members may nominate themselves.  The tri-chair tries to lead the focus of the council toward whatever issue may arise.  Debbie Justice nominated Cathy Nelson, who will think about it. 

IV.        bABY wATCH REPORT.

1.         Health Assessment Policy.    Susan Ord reported on the efforts by a workgroup that comprises State staff and providers to draft a new policy.  Providers have asked the State to reconsider the health assessment policy and the way it has been implemented.  The hope is to expand the assessment, especially in vision and hearing, so that qualified individuals other than a nurse can administer the assessment. 

When a child comes into early intervention, we assess in all areas of development: cognitive, communication, adaptive, social/emotional, and physical, including and vision and hearing so we can design and implement a plan for services.  We are also required to determine the child’s health status before the IFSP is developed.

The new policy says that at the annual IFSP, the child’s health status can be determined by three different methods.  Previously, there was either a review of medical records or a health assessment completed by a nurse.  We also want to add provisions to expand who can carry out the evaluation of the level of functioning in vision and hearing.  We have formed a vision screening committee that includes two pediatric ophthalmologists, USDB staff, nurses, and staff from different e.i. programs.  This committee is looking at the current vision screen, and asking what qualifications that person would have, what training they would need, and what the protocol at the initial exam would be, compared to at the annual IFSP.  The group is also looking at technology currently in use in other states, such as photoscreening, and who would read and interpret photos.  We are going to form a committee to work on hearing as well.  We are not changing policy without a lot of thought.  Our interest is ensuring we don’t eliminate something that we really need. 

2.         Health Assessment principles. 

1.       Access to a medical home is important for all children and is essential for children with special health care needs.  Early intervention programs will promote access to a medical home for all children.

2.       The early intervention program is not a medical provider and should not duplicate evaluations or assessments that have already been completed. 

3.       Information on health status, and vision and hearing development must be received within 45 days of referral in order to be utilized by the IFSP team in planning and evaluating services and the need for further evaluations.

4.       The early intervention nurse plays an important role in the evaluation and assessment process, as well as in the development of the initial and subsequent IFSPs.  The nurse can identify any medical or health conditions that could potentially impact the delivery of early intervention services.

5.       In addition to the initial and annual review of health status, and levels of functioning in vision and hearing; the type and frequency of assessments should be individualized according to the child’s need, and risk factors for developing health related problems.

6.     Children who fail the screening of hearing and/or vision that occur in the context of the Part C evaluation and assessment need a referral for full diagnostic audiological and/or vision evaluations by qualified professionals. 

7.       A statement of the child’s present levels of physical development, including vision, hearing, and health status is included on the initial and subsequent IFSPs.

8.       Nursing and health goals may be included on the IFSP for children who have health issues that can be met by the early intervention program.

3.         Health Assessment Practice.    We do an evaluation at least twice a year, but we don’t want to rule out doing it more often depending on risk factors.  We have a strong obligation to ensure children get the evaluations they need.  Those statements are on the IFSP along with nursing and health goals.  We are asking local programs to decide what they have the resources and capabilities for.  Programs have the ability to define their own health policies, although we will review these policies at the State level to ensure that they meet the overall requirements. 

Fan Tait remarked that it is important to ensure minimum competencies. Flexibility is fine, as long as there is a baseline of what needs to be done and how it can be done.  It is up to state to ensure the appropriate education of staff. 

Providers feel that at the annual IFSP, after they’ve worked with the child a year, they may not necessarily need to carry out the lengthy screen because they know the child is healthy.  We have required that a nurse do the hearing and vision screens, and the health assessment.  Many states are looking at this same issue.  We realize the importance of identifying health concerns in very young children even though sometimes there is difficulty getting medical records. Sometimes Early Intervention picks up problems that weren’t identified by doctors.

Gina Pola-Money suggested looking at enhancing a line in principle—when you’re looking at an IFSP, the F is family.  Where is the empowerment for the family?  The biggest part of the Medical Home is the partnership with family. 

Another point is to not look at vision and hearing in isolation; rather, it should be looked at as a package, in the context of overall development in all domains.  Who can do these assessments? Can an OT assess for eye-hand coordination?  The committee will need to pull all these parts into the revised health assessment, including families. 

Patti Van Wagoner suggested that the wording—children who have “failed” the vision screen might be put as children who have “had a need identified.”  Baby Watch plans to keep the ICC involved in the process as we continue to develop policies and procedures.  

4.         PIP Pilot Program.    Judi shared how the Ogden Health Department is participating in a pilot program where, when a child fails the newborn hearing screen, she is referred directly to PIP.  This has successfully reduced the rate of parents who don’t take child to the follow up screening.  This program is now going statewide to hospitals that want to participate in the pilot.

PIP is the organization that provides vision and hearing services, and collaborates with Early Intervention to ensure that there is a vision and a hearing person at each local program.  When a child fails his first screen, PIP gives support throughout that process.  There is not a high rate of families that ends up in PIP, but if a child needs treatment, the earlier he is picked up, the better.  Often, by age five, these PIP children’s language levels, regardless of hearing severity, are comparable to their peers’.  

5.         A Form For Physicians.    Mark Valentine remarked that before children enter school, families bring them in for a checkup to ensure they are ready.  Doctors have developed expertise in assessing and anticipating what children need to function in kindergarten.  Because high school students come in with a health form to be completed in order to compete in sports, doctors are skilled in assessing the heart, back, and joints, for rehabilitation if they get into sports.  But no one comes to the doctor with a form to ask whether the child will be eligible for Baby Watch.  There is a big potential for doctors to develop a level of expertise in assessing for Early Intervention.  Maybe Baby Watch could have a form directed to doctors or for parents to take to the Medical Home. 

6.         The Importance of The Medical Home.    Can a family get in to see doctor in time, within the 45 days?  This needs to be reviewed by the assessment team.  We should also consider such issues as whether there is a family doctor and whether families have the money for a co-pay.  We want a lifelong relationship with the doctor.  There are some logistical things to consider in establishing a Medical Home.  We have to investigate how to get connected with the Medical Home and do a good job of keeping current with our reporting to the Medical Home.  

It took three years to develop the communication form between schools and doctors that is on the Medical Home website.  This form could be adapted for early intervention.  Janet Wade noted that Intermountain Pediatrics has a Comprehensive Assessment for Tracking Community Health (CATCH) grant for developmental screening across all domains.  Utah and Salt Lake County e.i. providers will be involved in this undertaking.  She has been meeting with the chair of the Intermountain Pediatric Society, Dr. Gordon Glade on this.  It is clear that we need to connect and collaborate from the start.  We are working on integrating the flow of early intervention information to the pediatric practice.  GleeAnn Clayton stated that as a parent, it would be nice to have that piece of paper.  Sometimes it seems like a constant replay, because each time a family goes to the doctor, they must re-summarize everything about the child’s health history. 

7.         Annual Performance Report.    Part C is required to complete and submit an Annual Performance Report to OSEP.  The governor-appointed ICC is a separate advisory body with an obligation to submit a performance report to the governor.  In order to reduce paperwork, OSEP says that the two reports can be the same one.  In the past, the ICC has certified the Baby Watch report as their annual report, but also has the option of doing its own.  The state report is more complicated and comprehensive, because it is OSEP’s response to Congress and contains data that verifies our program’s implementation of IDEA. 

In the past, the ICC assisted Baby Watch in its self-assessment.  These self-assessments are being collapsed, but we will always do an Annual Performance Report.  This year our forms were delayed.  We just got them and our deadline is March 31^st.  We want to involve the ICC in this report.  If council members do not agree with the reports, or want to add things, they can. 

8.         Executive Summary.    OSEP asks the State to address cluster areas for Early Intervention, and the main pieces are General Supervision, Comprehensive Public Awareness and Child Find System, Family-centered Services, Natural Environments, and Transition to Early Childhood.  What we do is establish a baseline of what have we done, show trend data whenever possible, and self-assess.  We ask how we are really measuring ourselves, and then target activities and goals for the coming year. 

Patrice Isabella reviewed the report.  She explained that within the five cluster areas are a number of prescribed probes and indicators.  We then address each cluster area and each probe.  For each of those indicators we have a baseline and a goal.  It was useful in the process that OSEP asked us to drill down and survey at least three years.  This helped us to identify areas of progress and also of concern.  We don’t have trend data in every cluster area, as some are less well-defined, and more difficult to measure.

There are two mechanisms for General Supervision:  Provider Program Applications and Program file reviews.  Programs must demonstrate that the have appropriate procedures in place.  During this reporting review we did eight file reviews. For any area not in compliance, the program writes an Improvement Plan and Baby Watch provides ongoing technical assistance.

A significant area of general supervision in the report is the fact that in Utah, over three years, full-time equivalents (FTEs) increased 10 percent, while the number of children served has increased 25 percent. We are serving more children with fewer staff than the national baseline. People here do work hard.   In the CSPD section, progress is being made toward training and credentialing all early intervention workers.

Child Find data show a dramatic increase in caseload from 1998 to 2002.  By contrast, in the current reporting period, we have had some decline in caseload.  One indicator that OSEP asked us to address is what percentage of eligible population we are serving.  We served 1.8%, while the national baseline is 1.9%.  We served three-quarters of the national baseline of infants.  We hope to make sure we are finding and serving all of the eligible infants and toddlers. 

Another portion of the report shows the increasing diversity in our caseload.  The percentage of Hispanics served is now approaching the distribution in the population.  This is due to good efforts on the parts of programs and state. 

The Family-centered Services area is a difficult place to find data and drill down. Do family Support Services enhance outcomes?  We don’t have good baseline data in this area. We are focusing on training and systems development to enhance the outcomes in this area.  All states are struggling because there is not a good way to get this data. 

The majority of children are served in the home, which indicates that Utah is about where it should be regarding Natural Environments.  Program file reviews show that all of our families have a service coordinator and assessment in all domains within 45 days.

Another performance indicator is that when children exit, the majority transition out at age three.  However, during the assessment process, some may be found to be functioning at an age-appropriate level and can exit prior to age three.  Utah shows a slight increase over the national baseline of children who completed their IFSP (18% versus 15%) and exited prior to age three.

Kristina asked whether, since children are leaving for a variety of reasons, it is clear to them that they can re-access services if needed.  Did they really achieve developmental levels, or did families not understand how to get services they needed?  Susan explained that while there is a small percentage who did not let us know why they left, we have an obligation to do a transition and provide families with resources if they need them. We make sure we have a complete transition meeting.  There is also a tracking mechanism in place so that if children are exited before age three, there is an option to provide tracking and monitoring services.  This data doesn’t capture that fact. 

Debbie remarked that at age three or four they can fall through cracks and Connie Nink shared that Part B is working on this area.  Confidentiality issues make it difficult.  Part B is required to do Child Find too.  Debbie suggested working with the Medical Home to let them track this by getting the doctors involved.  Kristina suggested that when a child leaves an early intervention program, providing a release so the doctors are notified that early intervention services are being discontinued, and whether they qualify for Part B would be an additional safeguard.

Susan asked the ICC to provide feedback to Baby Watch on the annual report.  It is laid out in a good format for the ICC to review so we can focus on where we want to set the trends.  It has been a time-consuming process, but it shows the data that backs up all the work that we are doing.  It also shows the importance of working on BTOTS.  We can thank the Department of Health for finding other than Baby Watch funds to develop that.  It will help us to gather more data as time goes on.  Susan would like the ICC to be kept abreast of cluster areas we are looking at, especially if the ICC wants to take on data monitoring as an activity.

A MOTION made by Connie Nink and seconded by Gina Pola-Money to accept the Annual Performance Report for this year as written passed unanimously. 

V.         LEGISLATIVE SESSION REPORT.

Representative Bird summarized the session’s highlights specific to Health.  In contrast to the last three years, no programs had their budget reduced for FY05. [Please see Attachment A.]

IV.        NEW CAPTA REGULATIONS.

Patti explained that the Child Abuse Prevention and Treatment Act (CAPTA) requires the Division of Child and Family Services (DCFS) to support and enhance collaboration between child protection agencies, to address health needs including mental health and physical development. DCFS needs to develop provisions to refer a child in a neglect situation to Early Intervention.  Assuming there will be additional referrals, this will impact Baby Watch. DCFS wants to form a task force to help develop what those provisions and procedures should look like so they don’t flood Early Intervention with children who don’t need services.  Patti’s understanding is that they are required to set up the procedures and provisions, not refer all children. 

Children who have come into the custody of Child Protective Services have already had a physical exam.  The DCFS health care nurses are helping foster care providers to use the Ages and Stages screener. This could impact the number of children who are neglected and in ongoing involvement with DCFS.  Patti invited the ICC to become involved and passed around a taskforce signup sheet.  She is looking for as much participation, including parents, as possible.  Barb asked whether this should be an interagency agreement between the Department of Health and DCFS.  Patti replied that it needs to be a partnership, especially when we are looking at the number of children this could impact.  Jill Oberndorfer said that the Early Head Start Program 3- to 5-year-olds have an agreement with the local DCFS. 

Susan said that early intervention already receives referrals from DCFS of children who are identified with a delay, but the impact of the new CAPTA regulations means they may have to refer all the children, which would double our assessments.  It is important that we address the issues between our agencies.  The same type of requirement may happen with the reauthorization of IDEA.  The financial impact is one of the things to look at; this is a requirement for the CAPTA grant.  We have got to look at capacity.  We can’t deny services to anyone who might be eligible.  Cathy Nelson asked if this is only looking at evaluation, or does early intervention have the capacity to treat mental health issues?  Some IDEA portions indicate that we would expand our services to serve more children in this area. 

This partnership is important.  It is more about collaborating and identifying those children early.  A significant number of the total of children referred to DCFS is going to have some delays.  Is there a way to make sure we don’t refer children who don’t need early intervention services and still comply with CAPTA? 

V.         F.U.N. (FAMILIES UNITED NETWORK) MEETING report.

GleeAnn reported on how plans for the Parent Training Workshop are coming along.  The manual and resources are compiled, and the manual is being edited for the final time.  Right now they have 18 parents and the grant covers 30.  The Utah Parent Center brought GleeAnn in to be the coordinator, modeled after the national ICC training. 

The agenda will cover 1) family stories and how to tell them appropriately to make most impact in 2 ½ minutes; 2) the importance of telling your story; 3) what families look like, their different aspects, cultural awareness, siblings, grandparents; 4) the grieving process and how to get through it; 5) a communications packet; 6) teaching team building and what elements keep teams strong, including forming parent connection groups; 7) stress training and how to take care of self to take care of family; and 8) a completion ceremony with certificate.

Family Links continues the next two days, so parents can stay on for that conference. They will be putting parents onto teams to take things back to their own communities, then let them present to the group, so they can practice and see how effective their team is.

On the second day, GleeAnn will cover anything they didn’t finish in the training.  Registration packets went out two weeks ago.  This will be in Ogden at the Eccles Conference Center right before the Family Links Conference.  There is scholarship money for those who can’t pay for Family Links. This excellent training goes hand in hand with FUN and its work to help the ICC and to let parents feel they make a difference on the state level.  The dates are April 22 and 23, corresponding with the Family Links on April 23-24.  There will be Spanish translators.  GleeAnn wants the slots filled with e.i. families, because the grant was written for Early Intervention.  

Gina reminded the ICC that the Family Opportunity Act is close to being passed again.  This act gives the option for families who cannot get access to insurance because they are uninsurable to buy into Medicaid. Their children would have to meet the SSI definitions of eligibility.  Families should call their representatives and tell them how important this bill is.      

VIII.      NEXT SCHEDULED ICC MEETING.    May 21, 2004 at 9:30 AM at DOH Children with Special Health Care Needs, 44 North Medical Drive, Salt Lake City, Utah. 

IX.        ADJOURNMENT.    The meeting was adjourned at 11:59 AM.

APPROVED AS TO FORM:

____________________________________

Barbara Fiechtl, Chair for ICC

MINUTES SUBMITTED BY:

_____________________________________________

Ellen Parrish, Executive Secretary to the ICC