-
Evaluations: get done quickly during non-peak times.
-
In NYS, services are well funded compared to other states, kids are able
to access.
-
Numbers of service options available - kids don’t
have to fit into just one option.
-
Very collaborative approach between districts & providers.
-
Provide services out in community settings.
-
Good access for parents (i.e. Early Childhood Direction Center (ECDC),
Parent Network).
-
State has embraced private providers to provide services. Is
this a benefit vs. provision by school districts?
-
BOCES also provides, well trained staff, does a good job.
-
Diversity of providers makes system richer, enhances
service, system non-profits can offer more experience with age group than
districts. BOCES in districts,
able to offer services, expertise to prekindergarten’s.
-
Nice collaboration between professionals. We provide
services not only to children, but families as well.
-
Providers provide options that districts can’t
before school age and at age 21.
-
Evaluation system works well. Lots of options open to providers to
choose appropriate evaluations, assessments, etc. Legislature looks
at this, suggest district do them, don’t want a conflict of interest. Very
clear that this group wants evaluation system to stay as is. Districts
would most likely have to contract with providers to do evaluations due to
personnel & expertise. Districts don’t have links to community
organizations that providers might. Evaluators take the time & effort
to assist families.
-
Evaluation system works well to identify kids with disabilities and weed
out kids who do not have disabilities.
-
Parents choice of evaluators needs to stay, have objective
oversight with district Committee on Preschool Special Education’s
(CPSE).
-
Evaluation system a fairly objective system as per statistics.
-
When there is a problem a provider doing poorly, State needs to focus on
this provider, not system.
-
Regional issues also play a role.
-
Rate methodology system. DOH, SED & OMRDD totally disjointed. Money
should come out of 1 pot.
-
Rates are not timely, doesn’t deal with real costs (costs in today’s
money) i.e., utilities have soared, system doesn’t recognize increases
for them, cost of providing health benefits.
-
BOCES may be only providers in rural areas, can’t
carry over costs from year to year.
-
Legislators say “What’s your problem? Use appeal process.” Meanwhile
need to deficit spend, by the time you get through appeal, may never recover
costs. Very bad fiscal, very bad educational/clinical practice.
-
Many providers started at a much higher rate than Western New York (WNY)
has.
-
Consensus: dump methodology/schedule of reinforcement a problem, as well.
-
Need methodology that is: responsive to need of kids, recruitment (allows
for this), reimburses real costs, encourage agencies to carry a small surplus
(2-3%) to promote efficiency, creative solutions.
-
Fair funding initiative and excellence need to come down to CPSE.
-
Consensus is that county needs to be out of the picture, no involvement.
(County would not continue to pay).
-
Special Education Itinerant Teacher (SEIT): most agencies
don’t even
get the regional rate. If plummets in a bad year, can only come
back up to growth screen.
-
RSO has not increased since 1989/1991. Service unit a medical model
that doesn’t work well, fee for services should be replaced with tuition
based for RSO. RSO rate lower than EI rate.
-
Question: Would folk’s prefer a regional rate for SEIT? Depends. Rate
for New York City (NYC) lower than WNY. Would be better if RSO rate
was closer to EI; however, would really be better to have a rate more sensitive
to variables: how far to travel, etc.
-
Regression statements for summer services need to go. Not developmentally
appropriate, hurts kids going into school age. Game that leads to blaming. Horrible
thing to present to parents, difficult for them to understand. Goes
back to medical model & federal government trying to save money for
districts.
-
What would be the best way to go? For young children birth – 5
system would be better (eliminates 1 transition) and keeps focus on developmentally
appropriate. What about an entire new agency for birth – 6? Would
another bureaucracy be better?
-
Layers of personnel very expensive, not efficient.
-
Medicaid: restrictive, drowns people in paperwork.
-
Need enhanced funding for recruitment issue system need
to be based on real costs, not manipulating growth screens. State micromanages, needs
to be removed from current rate methodology. Methodology needs to
be based on real current costs, not historical costs.
-
Nursing issues hard to capture on Individual Education Program (IEP).
-
Notion of a global budget that allows money to be spent
as per need. Also,
need to consider flexibility in kind of program (1/2 vs. full day) without
having to do program modification.
-
Compliance with Office of Children and Family Services
(OCFS) when not a day care. Very difficult to meet State Education expectations because
hard to get typical kids. Shouldn’t it have to follow OCFS
except for safety when have to follow State Education Regulations.
-
IEP mandates: Need to have flexibility to meet child & family
member needs.
-
Need clear guidelines on 611 and 619. Need to be careful what you
ask for. Grants originally to be used for fun things. Now have
to go to necessities. Process much more complicated than used to
be.
-
EI & Preschool: What needs to happen? Don’t tie everything
to reimbursement and IFSP. Only way to get money is tied to prescription,
not program. (Model in existence for EI very poor).
-
OCFS regulations: issue may be to bring OCFS & SED regulations closer
in alignment, especially if you want typical & special needs together.
-
Transportation a horrendous issue. Frequently not appropriate. Cost
is huge (20-25% total cost of preschool related to transportation, if not
more.
-
Safety issues: non-responsive transportation
-
Parents are grateful system exists. So many challenges – good
to have a place to go to learn resources. Parent heard from several
people informally before they realized a problem. Pediatrician was
terrible. Pediatricians now mandated to identify problems.
-
As a parent we had no prior exposure to any of the challenges – to
have a place where people can give guidance and give therapy, etc … Is
important
-
Question was asked - where did you find out about system? – Childcare
provider who was a neighbor said they knew of EI program – parents
had to hear from several sources before it clicked that child may need
evaluation–
-
Pediatricians are horrible referral sources
-
Pediatrician in California referred for speech, but
insurance problem. Eventually
got California county speech services – very good, but in California
services go to school district at age 3 – not good. Moved
to New York for better services.
-
Consistency/coordination among providers was good during EI.
-
Looking forward to fresh input from new providers CPSE- so changing providers
can be a good thing
-
Coming to home is critical – accommodating needs
of family.
-
Service Coordinator (SC) said that therapist were really accommodating
to provide service anywhere
-
Many moms and dads cannot stay home during EI and families
need dual incomes – it
is hard because services are in child-care – if family gave up career
than they may get more out of system
-
Critical that families stay home
-
Awesome SC from county
-
Feel lucky with EI program
-
Lucky that we have ECDC
-
Communication that is built really works. Plus
parents learn to be communicators.
-
Every one working as a team
-
One school district paid for SC – sometimes you
have to ask for things and it can happen
-
Some CPSE are proactive and will go the extra mile when kids are young
so that hopefully the child will have less services down the road
-
When a child has a diagnosis – even if they are all classified as
PSWD – they get a lot of services (i.e. Down Syndrome (DS)
-
Good to do evaluations at home & good that parent has input in evaluation. Evaluation
seems like team approach for EI.
-
Parent felt that they were not intrusive in the team
-
One parent said that he believed CPSE services were
better than EI (i.e. fax came over during the CPSE meeting from pediatrician-
with the child’s
diagnosis – as soon as that happened all doors opened and child received
all recommended services plus more)
-
Autism = services
-
Preschool – integrative - more services because child is in a group – when
others get OT, residual benefit from other’s getting services in an
integrative class – EI did not have that option.
-
Parent member can be a great resource
-
This meeting was positive…
-
A lot of the services that end with EI program to CPSE
really need to continue – (Service
Coordinator & 12 month service to name two)
-
Too many rules that take place when looking at what
child really needs – rules
can inhibit what is allowed
-
Reimbursement is not conducive to appropriate service
-
Don’t have proper systems in place for siblings
and families
-
At times too many systems – Office of Mental Health (OMH) or OMRDD – need
systems that are more unified statewide at preschool level and School District
(SD) level – need additional funds to make the above happen. Some
of it is in EI program and then it is taken away which hurts the transition
-
Confusion over the range of transition times – should we stay in
EI or move – what date do we transition – may not get services
so let’s stay in EI program – not cut and dry – transition
whenever you feel like it – confusing for parents
-
Extended year causes a lot of issues
-
Many people have expectations of children with a diagnosis
(like Down Syndrome) so they say all kids with DS don’t’ need speech until this age
etc…. losing individuality
-
Can’t have same service provider when you transition – wasteful – you
have been working for 3 years with a provider and then you have to change
-
Lack of openings – agencies don’t have room
-
Need more slots
-
EI program people knew mom’s son well – yet
the EI program therapists did not have input into the new evaluations,
new IEP, for CPSE
-
CPSE mandated formally to get information and reports
from EI team…
-
CPSE has to provide new evaluations … all new team – all prior
documents and evaluations have to be communicated by parent – who needs
to make contacts – provide duplicate documents – If you don’t
get EI program therapists as part of the transition – the new evaluators
cannot see the whole child – it could be a good day or a bad day – it’s
only a snap shot of the child
-
Dissemination of information to parents – parents have to be proactive – cliff
notes –
-
What do you do when you have a diagnosis? People do not know where to go
-
What is an EI SC, what are they supposed to be doing?
-
This shouldn’t be this hard! …
-
Not all parents are educated – how to be tenacious
-
Families need help advocating
-
State needs to increase funding to ECDC and to Parent
Network – ECDC’s
funding has moved from families to supporting SPP
-
The parent rights that you get with the districts are
a joke – unreadable
-
Need a system to communicate the rights of the parents when you enter
-
Funding evidence based practices – so many therapies related to autism – 35-40
hrs of ABA is needed to be effective – districts only pay for 15
hrs.
-
Every kid should have the best chance
-
Why is this done through education not health care – others
totally opposed this because DOH is also not the right choice
-
Parent member of CPSE need to be paid –at the
very least for child care
-
School District (SD) choose parent member and when they
advocate the SDs don’t want strong advocate to come back
-
Breach of confidentiality with parent member
-
Parent advocate is different from parent member
-
Should not have CPSE and CSE meetings back to back – it’s wrong – it’s
confusing – it’s legal, but wrong – too overwhelming
-
Disconnect between providers and districts – provider has IEP but
isn’t following it and CPSE isn’t monitoring it …
-
What is the hold up – with districts not having enough options – kid
is going to Summit educational services and now she wants son to go to district – and
there is nothing in the district for autism – Mom wants an integrative
setting for social skills, interaction, learning how to play
-
Not paying for recreation programs for kids with autism
-
Child was in an integrative class in preschool now it
is more restrictive when they transition to school age because they will
be in segregated class; don’t have options in the SD
-
Integrate into regular schools- can graduate students
for IEP work in the schools- be the support for the SD…. save money – will
get credits for class, tuition forgiveness and SD gets help
-
We all know about the needs of autism and the increase – why aren’t
districts changing this
-
Difficult from forced integrative setting in CPSE to
regular kindergarten – services
were cut in Buffalo – and it will be too hard for child to transition
-
The one more year in preschool – was big discussion
-
Transition is stark from a integrative setting to throwing them into a
full inclusion setting
-
Are there enough opportunities for Least Restrictive
Environment (LRE)? No
-
The people who are the squeaky wheel get the LRE services
-
No consistency between service in districts
-
Child with Apraxia – all the quality programs are very expensive – doors
have been shut – music therapy –
-
Approve & support a variety of approaches - i.e.
music therapy
-
SSI
-
EI & preschool should be one system – one
seamless system
-
Example of a situation that happened to a family - IEP
dictates the services that are to be provided and the location - the preschool
was closed for power outage – since preschool was closed – relate service personnel
could not provide services at home because on the IEP it said preschool location – need
more flexibility because they were unable to provide the make-up in different
site – no flexibility on location of services on IEP - need flexibility
for power outage etc –
-
Parent perspective – system is so complicated – it
would make sense to simplify service and have one system
-
All the numbers that a family has called – read the law – ECDC
does B-5 and you have to go to other agencies when they are over 5 …too
confusing
-
0-6 with no benchmark was suggested by facilitator – families seem
OK with this – but may not know the downside – how would this
work – families think it would also work for transportation – sometimes
the child needs to go to more than one location –
-
Transportation is a big issue
-
Salary rates are so much higher in EI program than CPSE
-
Programs should be in their own community – too much transportation – schools
are closing –
-
Better system for providing transportation – 40 minute rides – behavior
problems – that may be why the child is receiving services and then
they are expected to sit on a long bus ride without behavior challenges
-
Some point in process where people who have had experience
with the child legally have to have input into the new evaluations – not
beneficial to child to ignore the people with experience
-
Family support needs to be early.
-
Problem with dual incomes needed in WNY – parent can’t stay
home with EI child. Need a supplement to enable parent to stay home.
-
Parent transitional child out of EI to prekindergarten
so mom could work. Another
parent had good services while child in daycare.
-
Problem with “child with disability” is classification. Not
specific enough so services are limited.
-
Daycare unwilling to be trained to serve child (trained by EI providers).
-
EI in New York is great, but only to 3 years old. Just
get Dx, start services, get to know providers and time to switch.
-
Service Coordinators more intense in EI.
-
Problem with rules regarding amounts of services (i.e.
if only need a service once a week, can’t get it). Have to need it twice a week. Problem
regarding deciding between OMRDD & OMH systems and/or neither system
applies.
-
No systems in place for family/sibling supports. OPTS won’t
pay for sibling services.
-
Some services stop at prekindergarten – automatic
summary program.
-
Services coordination. One school district paid
for service coordination.
-
Needs to be a way for services for kids who are not Dx, gray area.
-
Sometimes Dx limits the services. If Down Syndrome
children only get speech at certain age.
-
Services go up with tax.
-
Services are more if in a group vs. EI. Services
are less because at home.
-
Sometimes have to switch service coordinators when switch
from EI to prekindergarten. Because
county says “full”. The number of slots is a problem.
-
EI therapists have no input in evaluation/IEP etc. for
CPSE. Invite
EI team from parent – why completely ignore their experience. Need
a requirement that CPSE get information from prior providers. New evaluation
by CPSE often advisory so EI therapist should give information. A continuation
of service coordinator could provide this. Also need to tell parents
what a service coordinator does.
-
Burden on parents to be ridiculously proactive. Parents don’t
know where to start.
-
It shouldn’t be this hard.
-
Need to fund agencies like Parent Network to get info to families.
-
Notices regarding due process are good.
-
Autism – not enough services paid by districts. Need 30-35
hours of services, get only 15 – saves money in long run.
-
Need to utilize the CPSE parent member except others
have problems with parent members (i.e. school picks them and/or school
won’t use them
again if disagree). Parent member system is flawed. Could
be good, but not.
-
Professional parent advocators are better than parent members.
-
Should not have CPSE & CSE meetings back to back – overwhelming.
-
Disconnect between school district & private center
regarding implementing IEP.
-
Districts are slow getting programs for autistic kids
going to special private schools instead of district and special private
schools have waiting lists now. Kids need to be in district for socialization,
role models/typical peers.
-
Districts need to pay for ?????? for socialization.
-
Problem putting kids (autistic) in self contained instead
of mainstreamed when get to kindergarten. Use teacher education students to fill in
due to overload/need for assistants for autistic kids to be mainstreamed. Use
tuition forgiveness to get education grads to do this.
-
Difficult to go from private prekindergarten to regular
kindergarten and cut services when get to kindergarten. Transition
is stark from integrated private prekindergarten to regular kindergarten.
-
If child needs another year of prekindergarten – can’t get
services, can’t get prekindergarten in some districts.
-
LRE – enough options being offered? NO – have
to fight like a dog to get appropriate placement.
-
Why don’t districts approve methodologies that
are proven to work?
-
EI & Education/CSE should be one system. Seamless. Too
many evaluations, wasting money.
-
Problem where IEP says services provided in “daycare” so won’t
provide services at home for (i.e. storms & daycare closed). Need
flexibility regarding location.
-
Need family support – don’t know what is behavior and what
is sensory – I don’t know how to parent this child – parental
family and sibling support is critical – fathers are critical
-
Transition from EI to CPSE so child could services at
school in a Center Based (CB) program – would rather have a classification – because
of autism would get more services
-
Childcare teachers not on board – not wanting
people to come into their center
-
By the time we know service providers we have to transition – extend
EI program
-
Everything boils down to finances – trim off the
fat in a lot of agencies
-
Is there a preference for one agency b-5 – parent
said it may work
-
What if county was out of mix – not sure of the
answer
-
Get rid of burden of proof- Shafer v Weist
-
Get rid of Substantial regression
-
Not enough individuality (no “I” in IEP)
-
Is the task force going to be looking at other states? Are
there other states that are really doing it right?
-
Need developmental pediatricians
-
Why aren’t methodologies for therapies – peer
reviewed, journal published, impartial
-
Need to split therapists –
-
System is too complicated, too many levels – wastes
money.
-
What about 0-6 year’s system? YES. No benchmarks, but
would need a lot of changes due to DOH money, special education money etc. Maybe
regionalize rates.
-
Take the county out of transportation. They use private contractors;
they limit number of locations (i.e., daycare, grandma’s house, etc.). Transportation
and cost is a big issue.
-
Too much busing – should provide education in
community.
-
Burden of proof on parents has to go.
-
Substantial regression proof requirement is wrong (for summer programming).
-
Services given based on what district has available
(i.e., Occupational Therapy (OT) 2x week because school only has OT there
2x week. During
EI had OT 3x week.
-
Need to show progress in all we do. Outcome summaries need to change,
be more consistent. Methods vary, results hurt parents. If not
done with parent sitting there – very upset parent; too intimidating
and upsetting to parents. Open to interpretation – looking at
it differently than parents. How effective is this reporting? If
discussion did not include the #’s would be better. Need #’s
to be low to qualify.
-
EI – works well – has a parents piece to it. Could
be done with CPSE: a parent packet so parents can understand process better.
-
County should get 75% reimbursement – was promised. SD’s
will hate this, but a single point of entry for preschool would work better. Suggest
changing this. CPSE chairs
-
County should have more input into recommended services – an issue
counties face crisis – take up almost 60% of budget.
-
Monopoly for transportation – County stuck with
cost of transportation.
-
Reporting causes us to forget our goal – help
kids.
-
Erie County has no say at the table (CPSE). County goes to meetings,
has staff to do so. Costs to the county is a lot of money. Whether
or not County attends. CPSE’s make right decision. No one
looks at things with money in mind; look at what is best for child. Take
County out of this role or find a way to ensure adequate amount of money.
-
Noted by M.D. higher reimbursement of County
-
Question: do all agree that services do not change whether
or not the County is present? (overall – no)
-
CPSE is only one who knows what program calls.
-
Gathering services what child needs vs. what parents
want. Follow
guidelines from SED. County has equal voice if they are there, gets
a vote like rest of committee.
-
CPSE CSE: parents have difficulty w/LRE issues: perceived reduction in
service.
-
EI-CPSE: parents perceive more service in EI (more parent
friendly – real
world). EI-CPSE-CSE: parents not well enough prepared to understand
differences in programs. No change in system: giving less service,
parents must be more empowered as they move through systems.
-
EI CPSE more into education system, prepare for school age system -CSE
cannot recommend home services anyway.
-
Recommend –ECDC & SETRC give resources to SD to give parents
more access to empower parents to training – parents cannot attend
workshops (i.e. CDs).
-
Parent advocate system (volunteer) for CPSE & CSE: parent can contact
his person. This needs to be a paid position (look at how difficult
it is to get a parent member).
-
Recommend – should have service coordinator in CPSE & CSE.
-
Universal problem with transition from all 3 systems.
-
To alleviate transition problems: Transition team visits
child. Team
comes to meetings – parents meet players – have relationships.
-
Money issue: SD district staff having dual roles – CPSE & CSE. Districts
need a lot more money.
-
Therapists – not enough money to hire and pay
district therapist and service providers.
-
How evidenced based are recommendations. So much
money being spent without looking at outcomes.
-
Problems with lack of a single point of entry from EI to CPSE.
-
CPSE takes up way too much time.
-
Not a fair and equitable system ever - though all follow regulation.
-
Differences between counties re: services recommended. All
should be consistent.
-
SED does not follow up on reports to them.
-
Seamless system would be ideal, but problems. Erie County tried to
combine EI & CPSE – problems – who oversees jobs at stake,
etc.
-
Evidenced based practice not used enough. Outcome
Project now in place, but still subjective.
-
Difficult to evaluate after the fact. System must
be in place initially.
-
Hope DOH & SED SPP’s result is valid info.
-
Regional data system to know what placements and services
are available. State
departments must speak to each other.
-
Transition meetings is a waste – do not need another
meeting.
-
Have quarterly meetings between CPSE chairs & EI folks – to
keep each other informed on what is going on; touch base.
-
Allegheny County (AC) challenges are unique – don’t have providers. ABA
or much center based programs. Has a service coordinator. Waiting
list has dropped. Last year – no waiting list. AC service
coordinator, county employee – has a strong voice at CPSE; School
District works around his schedule.
-
Reading evaluation reports; enter EI – criteria. Enter CPSE – criteria:
delay remains – any progress? Less delay – some progress?
-
Better to look at this than use COS forms. Language used in evaluation – better
define how relates to kids.
-
Service delivery – who can use Teachers – some require supervision. Why
the difference? SEIT: EI can contract with SEIT, but Co. can’t. Autistic
population is exploding – Allegheny County has no SEIT agencies. Why
reimburse a SEIT on tuition basis (paid anyway), but Speech Path does not
get paid if no service. SEIT agency not motivated to do makeup services. Parents
must take some ownership here.
-
SEIT methodology stinks
-
EI-4410 methodology stinks
-
FBAs reimbursement: needs to be a rate for FBAs.
-
Lack of accountability of parents – parent does not take ownership. System
encourages parents dump kids in school district & county lap.
-
Center based programs with kids not showing up: School
district’s
pay anyway. SED must provide clear guidance.
-
Provider should/could monitor child’s attendance. Chairperson
takes responsibility – creates adversarial environment. CPSE
chair needs to build rapport & relationship because CSE chair has child
through age 21. Need SED guidelines/directives/policy/regulation/etc. Takes
heat off chairperson.
-
Need parent involvement in policy/guidelines etc. (parent
perception). Must
find out from parents why kids are not showing up. Need service
coordinator for CPSE.
-
Challenge: families are most challenging (more % of
children in special education? Yes. Need more support – take more time. Service
coordination would help. Not enough service providers (not bilingual
service providers, but most kids are bilingual. No evaluation in primary
language – families cannot communicate. No suggestions on
how to resolve this.
-
In EI – support in English in home, but not an educational delay
at CPSE level – disconnect between the 2 programs.
-
Need more Universal Prekindergarten (UPK) provided by SED.
-
Co. out of loop – school district only.
-
NYS adopt 0-5 system with a governing body (DOH or SED).
-
LEAs take over preschool.
-
Single point of entry.
-
Compare outcomes between counties – scientific basis & programs.
-
Single point of entry from EI program.
-
Under one umbrella – overall in state (done in
other states).
-
Evidence based practice – what works? Look at what works – make
it a model.
-
Evaluation process.
-
Service Coordinator in CPSE – county personnel
(or someone else) to coordinate services.
-
Re-evaluate SEIT system: Look at qualified personnel,
redefine so that availability increases, more consistency, rate setting – tuition based
for RS providers – possibly. County would have this, provider
would love this.
-
Rates must be considered.
-
Parent accountability: may be an attendance policy (must
be law). No
legal recourse. Need SED guidelines or more.
-
Incentives to get service providers in to rural areas. More
UPK programs.
-
Erie County Taskforce of districts – no enforcement piece; not all
districts participate (forum configuration must challenge (not chairs & providers)
to be more productive. Not an SED issue: not regulatory. Recommend:
become regulatory (needs to be an enforcer, must be unified. Enforcement
and consistency (SED or regional board).
-
All under SED – or all under DOH or 3 is 3 (many
issues including fiscal).
-
3 is 3: decrease waste of people’s time. Provider availability
aspect: would not happen with 3 is 3, probably would not be an issue, sometimes
a change at this time is good, may have difficulty in spring – not
always.
-
3 is 3 or transition Sept. 1. School calendar
is a good thing.
-
A single seamless system is best for kids & families
(by a governing system): school calendar, periodic evaluations eliminates
lots of meetings, eliminate too many confusing choices, continuing dealing
with personnel.
-
Summer – regression statements: either all get summer or eliminate
all. Examine and redefine ESY requirements. Some kids don’t
received ESY even though they need it, because regression can’t be
shown. SD issues – impact of ESY money large in large districts. Can
change ESY standards within a seamless system. Look at severity of
needs of child rather than prove a regression (multiply handicapped –v-
speech).
-
Seamless system: service coordination. 12 month
services (can alter placements).
-
Re EI: Oversite. Results in deficiencies re:
service to children.
-
Outcome summary needs to go, but need scientific date
to determine if what is being done is making a difference. Review,
redefine its effectiveness.