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
November 21, 2003
Attendance (alphabetical): Caroline Bass (via video),
Calvin Bird, Kris Fawson, Barbara Fiechtl, Timothy Floyd (via video),
Chris Giacovelli, Debbie Justice, Meredith Mannebach, Nancy Murphy, Judi
Nielsen, Cathy Nelson, Susan Ord, Mark Valentine, and Patty Van Wagoner.
Excused Absences: Cheryl Alexander, Sherry Hancock, Connie
Nink, Lynette Rasmussen and Fan Tait.
Absentees: GleeAnn Clayton, Kristina Hindert, Jill Oberndorfer,
Gina Pola-Money, Marcela Rafide, and Diana Sagers.
Visitors Present: Joyce Dolcourt and Donna Gleaves.
Baby Watch Staff: Janice Boswell, (equip.), Patrice Isabella,
Vanya Mabey, Kimberly Morris, Ellen Parrish (minutes), and Janet Wade.
I. WELCOME/INTRODUCTIONS. The meeting commenced at 9:40
AM, conducted by Chris Giacovelli. Introductions were made.
II. MINUTES. Due to absence of a quorum, the September
19, 2003 minutes were not approved.
III. THE ARC OF UTAH
Donna Gleaves, Executive Director of the Arc of Utah, presented information
on how the Arc was formed in the 1950s by parents interested in having
their children educated. The Arc stands for the rights of citizens with
disabilities. Founders of the Arc were instigators for IDEA, the Individuals
with Disabilities Education Act. Their focus moved to advocacy for other
supports and services as educational services for children improved. Utah’s
chapter focuses on respite programs, residential and employment support,
and special education. Joyce Dolcourt, Director of Governmental Affairs
reported on the Arc’s advocacy activities related to the following
legislation. Their website www.arcutah.org has links to make it easy to
contact legislators.
· IDEA is up for reauthorization, including Part C, and is on the
Senate calendar.
· The Ageing and Assistive Technology Act would give more coordinated
integrative support for getting assistive technology for people with disabilities.
· The Lifespan Respite Care Act creates a coordinated community-based
system of care.
· The Family Opportunity Act gives some families the chance to
purchase Medicaid for their children.
· The Genetic Non-discrimination in Health and Employment Act would
prevent insurers from discriminating against known genetic conditions.
· The National Affordable Housing Trust Fund proposes to set aside
HUD money to build or restore accessible, affordable housing for families
with a child with a disability.
IV. LEADERSHIP TEAM REPORT
- OSEP ICC Early Childhood Conference. Chris and GleeAnn Clayton
attended the same conference in Washington DC that Susan Ord attended
at the beginning of November. They were able to network with ICC members
from other states. It was an opportunity to compare how others run their
ICCs and deal with issues such as funding and eligibility. Many states
are implementing fees and looking at the same financial issues as Utah.
Our ICC is working well because we use subcommittees to deal with the
various problems. This really helps Susan to run this very complicated
program.
- New Members. Attending their first ICC meeting were Representative
Calvin Bird and TLC program director Debbie Justice. Because it takes
a while to figure out how things work with the ICC, the team will do
their best to mentor new members. Issues may change, but the same threads
we have dealt with for years run through our work. Ongoing issues include
eligibility, how to find families who need early intervention, and how
to best support and fund the local programs. ICC’s agency representation
is very important because Baby Watch is just one piece of the multi-agency
services for children with disabilities. Historically, Baby Watch is
the payor of last resort so it is important to have representation of
all affected agencies when decisions are being made.
V. FINANCE SUBCOMMITTEE REPORT
At the Finance Subcommittee meeting the group discussed issues raised
at the OSEP Early Childhood Conference. They have developed an action
plan and want to look at the fee system and what our services are costing.
Recent federal legislation means more children will be referred to early
intervention. As far as billing insurance, the national tone is that without
state legislation to mandate a level of coverage it is not very effective.
All ICC members and anyone they know who might be interested in the work
of the finance subcommittee are invited to the December 11 meeting
VI. BABY WATCH REPORT
- Funding Update. The Health Department had planned to request
an increase in funding for Baby Watch for an additional $1 million dollars
and held public hearings about budget and need. As the in-depth analysis
unfolded, based on the criteria that our caseload was not increasing,
the request was pulled.
- Enrollment. Child count numbers have decreased over the last
couple of months for several reasons: we changed our eligibility criteria,
we instituted an exit policy, and the institution of parent fees has
impacted families’ decision about entering the program. The question
is, will the caseload decrease level out, or continue, or increase at
some point? We will continue to monitor those numbers.
Kris Fawson remarked that with the changes in eligibility a greater
number of the children we are serving are severely delayed and wondered
whether it will cost more to serve the eligible children. The cost charged
for children who need more services makes it tricky to figure out. We
are not serving more severe children, but rather, serving fewer mild
children. Everyone in the program needs more services. We feel we are
serving those who really need Early Intervention.
- Fee Information. We instituted a sliding fee that ranges from
exempt to a low fee of $10/month to a cap of $100/month, based on income
and family size. This effort has been detailed to the ICC and Finance
Subcommittee, who helped us hammer out fee policy and implementation
procedure. The process includes sitting down with each family to determine
their fee and verify their income. Each family submits a Fee Determination
Form. If their income changes they should complete a new form. Until
now we didn’t know about the income of our families, but the income
breakdown indicates the majority are on the low end. When you look at
what they’re paying for fees, you can extrapolate family size.
When we apply our policy for WIC, Medicaid, TANF and extenuating circumstances,
70% of families are exempt from fees. If a family doesn’t want
to complete the form, the fee defaults to $100/month. This suggests
that the percentage of families paying $100 will decrease once these
families begin receiving bills.
- Exiting due to fees: At present 4% of families say they have
exited because of fees. We are particularly concerned that moderate
and severely delayed children are exiting. Interestingly, most families
who have chosen to exit because of fees were already in Early Intervention,
not entering as new families. Some programs report that as the old families
exit, the new ones coming in seem to have no problem with the idea of
fees. However, the incoming families with children who are siblings
of Early Intervention graduates don’t like the fees. On the positive
side, the things we’re trying to do at no cost—IFSP and
service coordination may be all that a child needs. And just because
a family opts out of Early Intervention, that doesn’t mean the
child is not receiving services. Some have private insurance or are
working with the child on their own. Moreover, providers believe many
of these families will end up returning to Early Intervention.
- Implementation Costs. Providers are reporting on the cost of
implementing fees including administrative and travel time, and supply
costs. They are not receiving extra funding to collect fees. We implemented
fees in August and costs are leveling out. Start-up costs are always
more. Right now we are collecting around $10,000 per month and are breaking
even on fees. We are predicting to level out at $10-12,000 per month.
Representative Bird asked who the providers for Early Intervention services
are and Susan explained that the state contracts with 15 agencies statewide
and the USDB PIP program, although PIP doesn’t receive Early Intervention
funds because vision and hearing services are free services by law.
If a family declines other Early Intervention services because of fees,
they still receive IFSP, service coordination, and PIP services free.
Other services include occupational, physical, and speech therapy; special
instructions to parents; and more. The providers include school districts
such as Weber and Jordan, local health departments such as Central Utah,
Universities such as USU’s Up to 3, and private non-profits such
as DDI Vantage. Our services are geographic, because it would otherwise
become an issue when it is time for the child to move into special education.
Programs re-apply every year. Programs receive many in-kind services
and initiate fundraisers to stretch their dollars. For example, Jordan
School District provides the building for the Child Development Center,
which serves over 1000 children in the 0 to 5 age range.
- Key Questions. Susan shared questions that have been formulating
in her mind after the OSEP Conference Part C Financing Workshop. Early
Intervention was never given the money for full funding. The question
is, how do we keep a growing program funded? Do we need more money?
Each year we ask the legislature for more money because our population
is growing. How do we know what it costs now by service? This is related
to the prevalence of delays. How many children should we be serving?
About 2%? It depends on demographics and eligibility. What is our expected
growth rate? How much does it cost us to do business? Are we catching
all of the children who need to be served? Are all resources being used,
e.g. state and federal dollars? Are we doing the right thing with the
money we have, i.e. report writing, IFSP, scheduling, and training?
Before we determine policy we need to know these things.
Measuring delay/disability is difficult. We can count how many of the
population have CP or Down syndrome—there is a 1/1000 chance that
a child will be born with Down syndrome—but not speech delay.
How we capture where these children are, needs to be parent driven.
50% of late talkers will eventually “get it,” but how do
we identify which 50 they are? Picking up on autism early is hit or
miss. It is difficult to diagnose until children reach the age of talking,
because it is a communication disorder. However, when there is significant
delay we don’t wait for a diagnosis to serve a child. We evaluate
all children who are referred. There is some reluctance to diagnose
before age three, even though we get a better outcome if the child is
treated earlier.
VII. WHAT A COST STUDY WOULD LOOK LIKE
Dr. Linda Goetze, an economist and researcher for the Early Intervention
Research Institute (EIRI) at USU who has worked in Early Intervention
for about 15 years and provided research to a number of states regarding
Parts B and C costs, talked to the council about what a Baby Watch cost
study would look like.
- Breaking down costs. Looking at the program costs, we break
down funds into Medicaid, federal, and state. We see this money, but
not donated buildings or other in-kind donations like volunteer help.
A cost study can identify those resources. Part of the average cost
per child includes staff, supplies, and travel. How many children are
in the denominator? Is it the number of children receiving services
at the Dec. 1 child count or is it the number with actual IFSPs?
Part C is obligated to do evaluation/assessment to all children who
are referred and provides services to children who never receive an
IFSP. If you count those services, which are not part of the Dec. 1
child count, there is a disjoint in the average cost per child.
We can describe the resources from the provider perspective (cost of
building, salaries for direct services, materials, etc) and average
the cost across all children even though we know services are different
for different children (a function of prevalence.) Do we want a description
of the types of children served or at the program level? We can measure
costs per program or costs per child.
We can break out the costs of consultants. Every program has therapists
and service coordinators but not all have psychologists or social workers.
Some programs keep costs lower by hiring paraprofessionals. We can look
at travel expenses. There is a shift over time that has altered the
cost of Early Intervention—the natural environments requirement.
Travel time has shifted from the parent to the provider. This means
that when physical therapists drive to visit families they are being
paid a high salary for travel time. This decreases the time available
for direct services.
One thing to look at is the model of service coordination. We may want
to look at how these individuals are doing in the various situations.
It’s difficult to ask providers to document their activities,
but these studies provide rich information. One irony is that we document
the time devoted to paperwork. If service coordinators spend time networking
it will all tie together and provide value.
IFSP development varies by program, for example. How valuable would
it be to look at this in terms of the child and family’s outcomes?
If there is a correlation it can suggest that certain programs spend
more time than they have to. Still, improving the family’s quality
of life is intangible, hard to measure. If you’ve got lots of
kids who don’t require as much and others who need more there
are differences. While we need to fund at a level for high quality services,
a high quality program such as Jordan’s is not reflected in how
they are funded.
Meredith Mannebach shared how her agency, DSPD, has done a time study
that was used to get a Medicaid bundled rate. They had to get information
from providers about what they are doing. DSPD forgot about the human
part—the outcomes. A program needs both to make a good business
decision. They had a set rate and found out that providers are doing
different things than what was counted and measured before.
- Medicaid. We have a Medicaid rate but we can’t get a
cost increase because we can’t show exactly what services cost.
We can’t just declare costs to Medicaid without proof. Plus, evaluation
and assessment is provided regardless of whether a child qualifies.
The cost of doing business rises, but we aren’t funding programs
more. Debbie asked whether we could look at Early Head Start and Early
Intervention to estimate the costs. It’s a way of doing business
that could provide this information. TLC’s in-kind with Head Start,
for instance, is at 25%.
Can we look at what the market rate is for private services to cost
these things out? Medicaid gives us a bundled rate, which means that
we receive a certain amount if we provide at least one service per month.
We aren’t paid based on which service is provided. In some other
states, each individual provider bills Medicaid.
- The Outcomes Factor. Nancy Murphy pointed out that talking
about costs and about how money is spread around is different than talking
about outcomes. What are we getting for our money? The intensity of
the disability doesn’t necessarily mean the services cost more.
This is an important question across the country. It is easier and smaller
to study costs we can measure. Medicaid cares about costs, not about
outcomes.
Linda stated that one can make some conclusions about outcomes by looking
at other studies. We can look at the service coordination study, taking
existing child development scores and extrapolating. This is also relevant
to the Medicaid issue as we are serving more severe children, and severe
children may cost more. We want to be able to document this to Medicaid.
We do need to attend to outcomes, but there is a problem with an outcomes
study in that you can’t deny services to a comparison group.
- Resolve to take the matter back to committee. It was decided
that the cost study issue be taken to the Finance Subcommittee. Susanne
Knight may already have the information we are looking for and we don’t
want to spend the money if we already have the data. Do we not have
the information because we have not asked the questions? We know about
budgeting, but not the cost of doing business. The providers will tell
you how much they spend, but not about in-kind expenditures. If the
state tells providers how to define in-kind expenditures we’ll
get unified information. Can we ask providers ourselves or would the
analysis piece of an outside study be missing? The Fees have a really
clear definition of the process so we should give the matter over to
the Finance Subcommittee for definition. The Finance Subcommittee will
look at this on December 11 and make recommendations to the ICC at the
next meeting.
VIII. NEXT SCHEDULED ICC MEETING. January 16, 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 12:15
PM.
APPROVED AS TO FORM:
____________________________________
Chris Giacovelli, Chair for ICC
MINUTES SUBMITTED BY:
_____________________________________________
Ellen Parrish, Executive Secretary for ICC
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