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MINUTES OF 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
January 17, 2003
Attendance (alphabetical): Jill Adams, Brenda Broadbent,
GleeAnn Clayton, Kris Fawson, Barbara Fiechtl, Timothy Floyd (via video),
Chris Giacovelli, Sherry Hancock, Judi Nielsen, Cathy Nelson, Jill Oberndorfer,
Susan Ord, Gina Pola-Money, Marcela Rafide, Lynette Rasmussen, Diana Sagers,
Fan Tait, and Shelley Wiseman.
Excused Absences: Caroline Bass, Pamela Colson, Meredith
Mannebach, Judi Nielsen, Dr. Fan Tait, and Patty Van Wagoner.
Absentees: Trisha Beck, Kristina Hindert, Johna Larson, and Diana Sagers.
Visitors Present: George Delavan and Sue Olsen.
Baby Watch Staff: Lori Brady, (equip.),Vanya Mabey, Kimberly Morris, Ellen
Parrish (minutes), and Janet Wade.
I. WELCOME/INTRODUCTIONS. The meeting commenced at 9:37 AM, conducted
by Sherry Hancock. Introductions were made. Telehealth site: St. George.
II. APPROVAL OF MINUTES. A MOTION made by GleeAnn Clayton
and seconded by Kris Fawson to accept the Minutes of November 15, 2002
as written carried unanimously.
III. FINANCE SUBCOMMITTEE REPORT.
- Summary. Under legislative mandate the State instituted parent
fees in 1997 but later went to a donation system. At November’s
ICC meeting, re-instituting parent fees was discussed and the Finance
Subcommittee was set on this task. They have met three times. Their
December 12 minutes were sent out to the ICC so that members had an
idea of the committee work on evaluating what the fees would look like.
They need ICC advise and consent on the policy change and it is important
that the ICC understands what is involved.
- Flat-Rate vs. Fee-For-Service. One thing they examined was
the Flat-Rate vs. Fee-For-Service pros and cons. The subcommittee’s
vote on these two systems changed from one meeting to the next, depending
on who was present. In November they voted to recommend Fee-For-Service,
then at the January follow-up meeting, the vote was for a flat rate.
The issue of ease of billing has an impact on what is more palatable
to providers. There are caps on the maximum monthly charge for either
system. The Fee-For-Service cap is $150/family or $250/family with more
than one child receiving services. The recommended rate for Fee-For-Service
is $45/individual services, or $10/group services per hour. Some of
this was based on data gathered in the 1997 UISSIS survey of 500 early
intervention families. The workgroup didn’t want to penalize families
who received a lot of services, and did not want families to cut back
on services based on inability to pay. Families do have the choice to
go to private therapy. Fee-For-Service could bring in a third more than
the Flat-Rate system. We don’t want implementation costs to exceed
the income generated, and fees must be uniform statewide.
- Sliding Scale Based on Family Income. Another group worked
on setting up parameters for sliding fees, with the lowest fee set at
180% of the federal poverty level. The difficulty is projecting our
families’ incomes because we don’t know yet if the early
intervention families reflect the state’s numbers. Plus, these
numbers don’t take family size into account. Looking optimistically
at those numbers it seemed like we could raise more than ½ million.
The committee also sampled families from a couple of different programs
to see what incomes and family sizes look like.
- Disregards. In the past there was a long list of disregards
that allowed families to not pay fees. But this task force found that,
with rare exception, the taxable income line on a family’s 1040
covers disregards. Programs won’t interrogate parents. Past fees
were set based on parent reporting and we never asked to see their income
tax form. Families can choose not to report this information. Extenuating
circumstances will be determined by providers if something such as a
substantial loss of income due to death or divorce comes up in a certain
month. We will pin all this down so the providers won’t be put
on the spot.
- What Families Want. The families currently in our programs
have never paid fees, but most say they would rather pay than lose services.
Federal regulations prohibit programs from charging for evaluation and
assessment and development of the IFSP or service coordination, so the
only fees to be exacted would be from direct services. But what is the
most fair to the family? If you pay $45 for one service and another
family pays $45 for six services, where is the equity? We do not want
collection to affect the relationship between the provider and the family.
Someone in each program would do the billing, not a direct service provider.
- Family Compliance. If this is a policy change, non-compliance
is not an option. Fees would have to be etched in stone. Families can’t
think one program doesn’t enforce the rules while another does.
Federal regulations say you cannot deny services if a family can’t
pay. If a family chooses not to pay, services can be denied. The local
program determines this, but there will be a system in place for appeal.
Compliance will have to be a state function
- Billing questions. Parents can pay the fees and submit a
claim to their insurance, but many don’t want insurance billed
by early intervention because it would tap out that resource fast. Billing
families could be an administrative nightmare, with no-shows, providers
missing appointments, or families feeling that group services would
be cheaper than individual. However, there is billing software used
by medical offices that could smooth this part out. One suggestion was
to bill families the actual costs of services and then their share.
We need a mindset change among providers. Accountability is good and
may even make services better. Getting staff to implement this consistently
is the challenge. Anytime you implement a system change, some folks
buy in, and some hold back. The learning curve is a 3-year process.
A couple more years of implementation and monitoring could have grown
the previous fee system into profitability.
- Exiting. Another issue is graduating the children out. Fees
will result in a different attitude toward exiting. Moreover, if families
are paying, they may feel more accountable for doing what the direct
service providers tell them to do to help their child’s development.
No-shows would lessen. If money is at stake they will either cancel
in a timely manner, or show up.
We will also need to sell our plan to the legislature. Nobody wants
to do this, but in Utah we don’t have a lot of choice. We have
got to find the best bang for our buck and most parents are willing.
It won’t be easy, but we make lots of tough choices. We should
implement fees and then we can change the amount by year and by budgetary
needs. This is hardest for the families currently in the system. But
the children will age out quickly. In a way we are teaching families
the hard truth that there will always be costs, for the whole life of
the child.
IV. BABY WATCH REPORT
- Public Hearings. Susan Ord explained how the State Plan
must be submitted to OSEP each year. If there are large changes, we
need public comment. We anticipate that we may have to make changes
and therefore we are holding hearings regarding eligibility and parent
fees. If OSEP accepts the State’s proposed changes, we can make
lesser changes without another public hearing. We have gone to the extreme
due to the timing issues. After the public comment, OSEP will review
the summary of that. Copies of the proposed changes stating that we
could cut the mild and moderate categories, along with automatic qualifying
diagnoses for premature babies and drug-exposed infants have been sent
out to interested parties statewide. The public hearing is a forum for
parents to be heard, not a Q& A session. Families are not voting
on the matter, they are giving input about what matters to them. If
parents ask, we should tell them the fee system is yet to be determined.
It’s also an opportunity to explain that since it is before the
legislative session closes, the outcome remains to be seen. With public
hearings we are laying the groundwork for changes. This is a responsible
way to take this to the legislature. What they appropriate to early
intervention will affect eligibility changes.
- Eligibility and parent fees impact one another and we don’t
want to cut eligibility. We need to explain how interrelated they
are. Many of our families could be cut if eligibility is changed. Families
whose children have a mild disability will be impacted more. From an
ICC perspective, we need to make a recommendation.
Parent fees won’t solve all the problems. But we may not have
to change eligibility if we get funded. It’s a timing issue. We
have an April deadline for submitting our state plan, working backward
from the 60-day public comment period with 30-days advance notification.
This may work in our favor because it shows that we are looking at fees
in order to help with the program. The bigger concern is eligibility.
It is important to note that those children who will be cut will cost
more at school age. It is more cost-effective to serve them early. With
the budget the way it is, the legislature can’t pick up all costs
and we’re willing to go to fees to maintain eligibility at the
current level. Do we decide between cutting kids or charging fees? These
aren’t separate issues and families need to understand the relationship.
Eligibility for services is not based on income, but early intervention
is not an entitlement program, the child must qualify first. Changing
eligibility has nothing to do with income. The program is based on federal
regulations. Only up to age three can an agency charge a fee, after
that, the child is served by the schools, which is an entitlement program.
Fees might offset the possible eligibility restrictions and help us
to maintain services to as many children as possible. Determining which
way would bring the most money in is key. Pediatricians are concerned
about possibly cutting children with mild delays and are calling their
legislators about this. Special Education directors have also said they
will support the request for early intervention funding. George Delavan
asked who, among these directors might be able to testify for the Department
of Health. The eligibility issue is a concern among preschool coordinators
as well.
- Vote on Parent Fees. Barbara Fiechtl made A MOTION, seconded
by Brenda Broadbent, that the ICC recommend instituting parent fees
to help support early intervention services in our state. The MOTION
CARRIED UNANIMOUSLY.
- Eligibility Subcommittee Formation. Changing eligibility
and parent fees are linked. We are suggesting fees, and funds available
will impact who we have to cut. We want to hear from providers about
eligibility, and whether we are over-qualifying children and see how
their proposal looks compared with the state’s. They recommend
changing exit criteria, and watching numbers carefully in the individual
programs. We can’t separate these issues, it’s a logical
trap to say we support parent fees but not eligibility changes. The
ICC hasn’t had enough discussion about eligibility to determine
its position.
A formal subcommittee will review the eligibility issue and make a recommendation
to the ICC. Chris Giacovelli will recruit some providers, including
rurals, to sit on this subcommittee. We will see if someone from EIRI
who has data on Part C families now in Part B, and perhaps someone from
the pediatric society will participate. There may need to be more than
one meeting before March 21st when the ICC meets again.
V. LEGISLATIVE ADVOCACY ACTIVITIES
GleeAnn Clayton is developing a phone tree for parents in each program
so they can get information across the state instantly. She wants families
to contact their legislators and tell them they’ll be at the reception
for the Legislative Coalition For People With Disabilities. Families should
RSVP to the LCPD at 363-3300 x16 or 580-6091. People can contact their
county clerk to find out who their representatives are. The reception
is January 22 from 4 to 6 pm. The LCPD also needs parents at the February
3rd meeting from 2 to 5 pm in room 403 at the state capitol. Right now
they don’t know exactly when early intervention will be on the table.
They want 3 or 4 families to tell their stories and the others to have
their stories in their hands to give to the legislators. The more the
better and families should bring their children. GleeAnn also wants families
to email her their consent for her to show their stories in the scrapbook
to the legislators. The Medicaid hearing will be January 27 or 29 from
2 to 5 pm in the same room. The DSPD hearing is February 10. Interested
people should contact Kris Fawson, Tina Johnson, Gina Pola-Money, Joyce
Dolcourt, or Julia Pierce. If anyone wants to testify on Medicaid children’s
issues, that would be great. Medicaid provides more than 3 million to
early intervention and is ongoing, not just up to age three. The problem
is, reimbursement rates for healthcare providers are going down. This
impacts people because more and more providers are not taking Medicaid
clients anymore.
VI. PARENT SUBCOMMITEE REPORT
Jill Adams reported that the last parent meeting included participants
from Vernal, Cedar City, St. George and Provo. She feels encouraged that
there is more buy-in by outlying programs. Identifying issues such as
the public hearings is important. Parents are getting excited about going
back to their programs and getting involved. There will be a tri-chair
election at the next meeting. Two Vernal parents invited the Health and
Human Services Committee co-chair to their program to take him around.
This was a way for him to get to know the program and hear their stories.
VII. NEXT SCHEDULED ICC MEETING. March 21, 2003 at 9:30
AM at DOH Children with Special Health Care Needs, 44 North Medical Drive,
Salt Lake City, Utah.
VIII. ADJOURNMENT. The meeting was adjourned at 12:00
PM.
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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