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MINUTES OF UTAH INTERAGENCY COORDINATING COUNCIL (ICC)UTAH
INTERAGENCY COORDINATING COUNCIL
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 21, 2003
Attendance (alphabetical): Caroline Bass (via phone),
Brenda Broadbent, GleeAnn Clayton, Pamela Colson, Kris Fawson, Barbara
Fiechtl, Timothy Floyd (via phone), Chris Giacovelli, Sherry Hancock,
Judi Nielsen, Jill Oberndorfer, Susan Ord, Gina Pola-Money, Marcela Rafide,
Lynette Rasmussen, Diana Sagers, Fan Tait, Patty Van Wagoner, and Shelley
Wiseman.
Excused Absences: Meredith Mannebach and Cathy Nelson.
Absentees: Jill Adams, Kristina Hindert, and Johna Larson.
Visitors Present: George Delavan and Joyce Dolcourt.
Baby Watch Staff: Lori Brady, (equip.),Vanya Mabey, Kimberly Morris, Ellen
Parrish (minutes), and Janet Wade.
I. WELCOME/INTRODUCTIONS. The meeting commenced at 9:45
AM, conducted by Sherry Hancock. Introductions were made. Council members
expressed their sympathy to Gina Pola-Money on the loss of her son Tyson.
Fan Tait and Chris Giacovelli shared some memories.
II. APPROVAL OF MINUTES. A MOTION made by Kris Fawson
and seconded by Fan Tait to accept the Minutes of January 17, 2003 after
correcting the spelling of Joyce Dolcourt’s name was unanimously
approved.
III. LEGISLATIVE FUNDING REPORT.
- $1 million allocation. Susan Ord announced that Baby Watch was able
to secure $1 million of the $2.3 million needed to maintain services
at the current level. Governor Leavitt included Early Intervention in
his budget proposal for $1.3 million. We were fortunate to get this
help and Susan credited the Legislative Coalition for People with Disabilities,
the ICC, parents, and providers for their work to keep early intervention
at the legislative forefront. Susan suggested that the ICC write letters
thanking the elected officials for their support and the chairs agreed
to do this.
- Kris Fawson said that LCPD advocates have never worked harder than
this year on the early intervention budget. GleeAnn Clayton deserves
kudos for her book of stories. The press conference and the many people
who were there talking to the legislature were also valuable. The initiative
was a successful grass roots effort that illustrates how critical it
is for people to get involved in showing legislators how important this
program is. GleeAnn asked providers to let their program parents know
how key their support was. The story of a Jordan family with triplets
was featured on Channel 4 and in the Tribune. Jacob Santini, the reporter,
did an excellent report.
IV. BABY WATCH REPORT
- Sliding fee scale. The legislature did say that Baby Watch must institute
parent fees on a sliding scale.
- Public Hearings. Susan handed out a sheet with charts showing the
results of the public hearings. It was hard to tease out more exact
measurements because there were so many different comments. We will
want to take the comments into consideration when we are talking about
parent fees and eligibility.
- State Plan. To get our federal grant, in April or May we’ll
need to re-write sections of the State Plan, including proposing a definition
of developmental delay. The definition changes are less drastic than
what was drafted for the public hearings and it will be approved. We
don’t need an exit policy to show OSEP.
- Compliance Coordinator for Baby Watch. This position is open if anyone
is interested or knows someone who may be.
V. ELIGIBILITY SUBCOMMITTEE REPORT
- Mild and Moderate Definition change. Barb Fiechtl explained the eligibility
subcommittee recommend the ICC accept the Provider group's recommendation
that the eligibility be changed to –1.5 standard deviations in
one area to qualify for services. The previous mild category of –1.0
standard deviation in three areas of development will be eliminated.
The committee discussed a long term follow-up from EIRI at USU that
showed that children in the mild/moderate category do benefit from early
intervention and some will graduate and not require services once they
reach school age. Children who are at risk of mild delay can be on tracking
and monitoring to ensure they’ll be served if they need it, or
we can offer them the option of receiving services for tuition.
- Exit Policy. Once a child is in a program it is hard to exit them,
especially when they are progressing. Children brought into the program
at –1.5 standard deviation, would exit when they reach –1.0
standard deviation. This way they will have progressed to the normal
range before exiting services. The drawback is that programs will have
to do more testing. At six months they will need to re-test and after
doing so, they may have to exit these children. Providers know that
saying goodbye is tough, but we should celebrate that early intervention
has been successful in helping the child. Providers feel that if we
bring in only the premature infants that require services, set an exit
policy, and change eligibility we will be able to make our services
more efficient with our limited funding
Diana Sagers remarked that exiting is about empowering families by graduating
them from services, adopting an attitude toward the parents that they’re
the best advocate for their child. Chris stated that before providers
let families exit they do look at this. Providers can track and monitor
children until they’re three.
With the Medical Home, when families have a relationship with their
primary care doctor, the doctor can make the referral. It is critical
that family doctors know to refer their patients appropriately. Sharing
the eligibility form helps because it shows scores. A pediatrician can
look at it very quickly and learn what she needs to know. The eligibility
form should always get to the Medical Home.
- Transitions. How will we best transition families? Hopefully, providers
are sensitive to the individual needs of each family. In the law we
have best practice for transition. Through the IFSP, the provider determines
what the child needs and what the family needs to help that child. There
is a transition period 90 days before the child is exited. If they’re
in Part C they’re funded. Once they leave Part C, providers keep
them in tracking and monitoring to ensure that families have the continued
contact they need.
- Removing pre maturity as an automatic qualifier. Vanya Mabey is working
with a committee to identify what medical conditions are present when
a premature infant requires services Informed clinical opinion can still
bring a child in using this new criteria.
- Hypoxic Ischemic Encephalopathy. Fan explained how Neonatal Follow
Up and Neonatologists worked this definition this up; they have a very
strict definition of this condition. What you don’t want is to
miss a child. This condition will stay on the list according to the
definition used in NICUs.
A MOTION made by Kris Fawson to recommend the lead agency adopt the
changes to eligibility outlined but including the Hypoxic Ischemic Encephalopathy
NICU definition was seconded by Barbara Fiechtl and carried unanimously.
VI. PARENT FEES REPORT
- History. Chris stated that there have already been hours and months
of discussion because there are many issues. Most of the providers opposed
parent fees in 1997. They were not convinced and did not fully buy into
collecting fees, so the initiative failed. Now we are a big system requiring
a more money to serve many more children, and providers realize that
they can’t count on an endless flow of money from the legislature.
We have no choice but to make it work. The providers must arrive at
the mind set that the services are worth it! The fee system has to be
fair around the state. We can’t have one program making a big
effort and another not.
- Collection. The system must be feasible. We are looking at the Child
Development Clinic sliding fee scale range, which is based on family
size and income and begins at 185% of the Federal Poverty Level. There
would be a cap on the most that any family would pay and some families
may not be required to pay at all depending on their position on the
sliding scale. We need to bring in a reasonable amount of revenue in
a reasonable way, around $200,000 to $300,000 per year. Our efforts
in collecting fees will be extremely important to show the legislature
that we are really trying to make parent fees work as well as knowing
we have this additional stream of funding to support early intervention
services. The state will end up putting out a policy to the providers,
but it will be the state that determines the policy. The policy must
be clear, and it must be workable.
Another detail of this issue is who will do the billing. Susan has met
with the Department of Health people and gotten some ideas of what steps
we would need to take. We may have to hire somebody. It could take close
to $50,000 to institute a billing system.
Diana said that her daughter’s services must have been worth $400-500
per month and that was a bargain. The attitude about the value is important,
because the value to families is immense.
The committee will have to tackle the issue of providing services to
families who cannot pay, but what about families who WON’T pay?
This will be another detail in the implementation guidelines.
The parent fees committee is recommending a sliding fee scale on a flat
rate schedule to the ICC. Fan thanked the committee, which met for many
hours and tackled many issues. It has taken lots of time and lots of
people, and will continue to do so.
A MOTION made by Fan Tait to accept the Finance Subcommittee’s
recommendation that Baby Watch use a Flat rate sliding fee scale and
that the committee continue to work on the scale amounts, the disregard
issues, and non-payer issues. This was seconded by Kristine Fawson and
carried unanimously.
VII. MISCELLANEOUS ITEMS.
Janet Wade announced that GleeAnn Clayton has been named the Parent of
the Year by the Utah Council for Exceptional Children.
The Parent committee has a tri-chair in place with Jill Adams as past
chair, GleeAnn as present chair, and Heather Cunningham as chair elect.
They are changing their name to FUN—Families United Network and
will begin to send out a newsletter to providers and families. Next meeting
is April 1, with Karen Hahne as guest speaker.
Kristina Hindert has been named president of the newly-formed UAIMH, which
resulted from the support of the ICC to get the initiative moving. UAIMH
is an affiliate of the WAIMH.
Brenda Broadbent announced that the May 16 ICC meeting will be her last,
as the DOE has hired Connie Nink, who has a lot of preschool background
to cover Part B.
VIII. NEXT SCHEDULED ICC MEETING. May 16, 2003 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 11:30
AM.
APPROVED AS TO FORM:
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Sherry Hancock, Chair for ICC
MINUTES SUBMITTED BY:
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Ellen Parrish, Executive Secretary for ICC
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