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It’s hard for parents to get options. Parent says the EI service
coordinator did not provide options. At Committee on Preschool Special Education
(CPSE) meetings parents don’t do the talking – everybody else
does the talking.
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Parent has two children. One is integrated and the other
in a special class. Parent
has asked for full day special class. School district says no. Parent
notes so much improvement for child-talking after half day program.
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Person who controls decisions gets recommendations made
based on cost. Huge
problem in some counties. (Very frustrating and intimidating). So
much inconsistency from county to county.
-
Parent of a 4½ year old son had to fight for services. When child
was supposed to start – transportation was another fight for the child.
Child is cognitively high but hits a lot. Why do you have to fight the school
district? What happens to parents who don’t know special
education? What’s available?
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Parent suggests that Early Childhood Direction Center (ECDC)s are funded
to help families.
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What to do that would help parents use resources?
- Districts try to dumb down system and minimalize parent concerns
- School districts need to address all parents
- School districts should put information and resources on-line
- EI service coordination and information from bad special education teachers
- Transition was bad, trying to get a Special Education Itinerant Teacher
(SEIT) and then had to wait for a qualified professional. CPSE
did not help.
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Rural counties have special problems getting qualified professionals. When
a complaint was made to the Regional Associate, parent was advised that the
problem was a staff issue.
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Constant changing of staff.
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Many parents don’t question the quality of services.
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Concern of continuity of services for children.
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Real break in the system at transition.
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Those approved to provide services should be able to work in EI and preschool.
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Could be a set back for child to have an interruption in service provider.
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When child turned 3, parent didn’t want to send
the child to program.
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Service coordination is very important/critical and should be available
for at least 6 months after child enters Kindergarten.
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When CPSE person is asked, it goes back to funding.
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Would not like to see a transition from 2 to 3.
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Why isn’t there service coordination earlier? Medicaid
service coordinator is often assigned.
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Medicaid service coordinator is available to families of school children
and can help school staff.
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Independent Living Centers can assist families. Grandmother speaks of help
of Independent Living Centers to explain that special education is available
for children. Family Network, Parent to Parent and Regional centers are also
helpful.
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Parent was told that parents can get printed materials
from State Education Department (SED) – not agencies. Recommends
parents to individually request materials from SED.
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Why do we have to transition children at 2½?
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Even professional in EI was overwhelmed
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Would rather transition be at 4 not 2½
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Programs and services need to be individualized.
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Parent of very medically fragile kids (natural and adoptive
children) is concerned that children’s educational needs are not addressed any differently
than for other children. Why isn’t there more emphasis on education
for these children? This is a statewide problem. Qualifications of professionals
should not change when children transition.
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Parents encouraged to visit options, but many times services/programs are
not available when child is eligible to receive them.
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Attendance should be monitored. If class is “capped at 12” and
some children don’t attend, those children should be dropped and
space made for others.
-
Long term education is an issue. Education system is set up for planning
one year at a time. Parent has to provide the thread from year to year and
also has to coordinate services among medical and education professionals.
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Sometimes who the parent is drives the kind of programs and services recommended
for children.
-
Advocacy is so important and very much influences the ways and kinds of
decisions that are made and decisions are made.
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School districts should give resource information to parents.
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Family court services were coordinated and available.
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Key is having support.
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Service coordination is vital and should be birth to death.
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Service coordinator can’t give parents all information
needed.
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NYS Regulations are no longer available in print. It’s not fair. Advocacy
agencies download so many pages and must print copies for families at their
expense. Districts should start off giving parents the SED website
address.
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Transitions can be smooth or terrible.
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Problems when professionals use their professional opinions about children
instead of knowledge and training (especially for kids with autism).
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Early Intervention Service Coordinator - Family was approached and connected
to service coordinator while child is in the hospital. Very helpful when
S.C. comes to home.
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Options cut off when child transitions.
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Parents had to be their own advocates. Parents
found a regular nursery school which advised child to go to physician who
directed family to the committee.
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Issue about how kids are identified –
- 4 professionals consulted and all provided evaluations. CPSE did not
even look at evaluations parent provided. The Committee really was not
looking at child’s individual needs and the recommendation was
off base and not appropriate for child.
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Parents brought child with them to visit program and
attend the CPSE meeting. Very intimidating – there were 15 people
at a table. CPSE focused on one program. Parent refused recommendation
and brought a lawyer to the second meeting which very much improved from
first CPSE meeting. School districts made decisions that parent had to
fight for a one on one aide. School
district said no.
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School districts place child in outside programs.
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Parents think that district programs are needed.
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State should put in place incentives for people to go
into special education (teach)
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Should physicians have a different role? Parent
says all physicians are not trained in child development. A parent
provided evaluation reports from an Autism center outside New York and
committee completely ignored their recommendations.
-
If a child attends a center based preschool, can not
get home instruction/services
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Transportation issues –
- In rural areas – lots of families transport their children
- Bussing for 2 hours for children or parent drives is unacceptable.
Took 6 months to get speech therapy in EI.
-
Services had to change to bring children closer to home – not
same quality.
-
Transportation arrangements difficult –
- A 2 year old was put on a bus with a 13 year old with emotional difficulties.
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Needs to be a time limit for transportation from NYC
throughout State.
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Parent is still waiting for transportation reimbursement
check.
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Due process is very lengthy. Needs to be a step that’s
less intimidating – i.e.
mediation, but before resolution session.
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Issue of kids getting less than 5 days of services. In
one district all kids get 5 days of services whether or not that was needed.
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Belief that LRE fosters independence.
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Change: parent doesn’t want children evaluated
by any agency that has a financial stake in serving that child.
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There’s a lot of work/tightrope to get services.
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Parents should have people who help, not push you away.
People in decision making positions should not be making recommendations
based on costs.
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Parent must fight for everything: parents need
an advocate.
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How do we make school districts accountable? Even if
school district is “wrong”,
there are no consequences for violating the Individual Education Program
(IEP). It’s atrocious.
-
There is accountability of a complaint brought to Vocational
Education Services for Individuals with Disabilities (VESID)/Regional Associate
(RA). Some
children don’t get services for 6-9 months even after parent “wins” in
hearing. (Process takes too long.)
-
Question: If Department of Health (DOH)
and SED fund EI and Preschool why is there inconsistency in what is funded
(such as playgroups)?
-
If an agency complains against the county, the contract
is “yanked” by
county. Family is left without services.
-
County is sometimes “the bully”. County
said child didn’t
need services.
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Possible solution: funding for statewide advocacy
center/services needed. Issue is often about money but not always: sometimes
it’s
about ego; sometimes parents are put into a position of being police of
the system and knowing and enforcing the law
-
Need to have some kind of monitoring for compliance.
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Parent recommends a Protection Advocacy System, not
a government agency.
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What happens if child gets years of services but at
21 can not get a job? Nobody looks at the cost of the long term services
after 21 years (could be for 40 years)
-
There’s compartmentalized thinking, instead of
long term planning.
-
Recommend “front loading programs” for young
children, rather than having huge expenses down the road.
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Give people choices: give parents a bigger say and respect
their choices. Give parents an equal say at the table. The parent
is ultimately responsible for child (both successes and failures).
-
Give parents access to information – information
shouldn’t
be so hard to get.
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Stress making decisions as a team.
-
Need to look at outcomes for children. Preschool
has more flexibility for designing individual programs. (Child learned
more in 2 years of preschool than in the 2 years after Kindergarten.)
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Child care provider more involved in process
-
Need more options statewide for children. In rural areas where forums need
to be closer to North Country.
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Sometimes takes months to get in
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Some parents feel once identified labeled for life
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Some therapists do not communicate
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Poor scheduling by individual therapists
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Providers should help parents know their rights
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Continuing service coordination
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Rural areas feel isolated without services
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Role conflict between CPSE, EI & County & providers
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Providers hand slapped when information given to parents sometimes
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Someone needs to explain to parents instead of handing a booklet
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Service coordination for provider becomes confusing
when RSO & SEIT
-
Service coordination from classroom based program seems to work
-
No additional rates for service coordination for SEIT
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CPSE Chairs need to be trained when new and receive ongoing
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Training might improve consistent decisions across districts
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CPSE should be more closely monitored by preschool
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Parent advocate should be chosen by outside entity
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Parent advocates at meetings important
-
Parent member link by district & providers
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Chairperson should not choose parent member
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More money so provider group is more complete
-
Transportation should not be county provided nor providers
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More consistency with transportation. between counties
-
Districts should provide transportation
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Districts should coordinate efforts if providing
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County eliminated from process
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SEIT approval should be clearer and regional needs more established
-
EI teachers should be able to provide SEIT
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Limitation of 2 ½ million UPK makes difficult
to provide integrated program
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Many providers quit providing because of rates
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Change eligibility for ESY
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Causes difficulty to children when trying to prove regression.
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At AR not focus on goals & objectives but tends
to focus on regression
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School age regulations not appropriate for preschoolers
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2 months out of preschool different than for school age
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Valid IEP should follow in-state move
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County requirements should be consistent across state
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Guidelines needed for eligibility for 1-1 aide
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Financial incentive for special education to stay in system
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Salaries & benefits closer to school district
-
Incentives for staff development & mentoring as
available in districts
-
Teacher aides & assistants need higher pay & better
benefits
-
Incentives for more providers in rural areas
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Better access for services for parents in rural areas
-
Training on being CPSE chair
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Regional Associates should attend discussions
-
Conflict for payers to make program decisions
-
Counties to provide is conflict of interest (more saying)
-
Professional expertise often ignored due to monetary reasons
-
Some County representatives not trained in early special education
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CPSE need to understand how to Chair a meeting
-
CPSE Chairs favor BOCES over private because of connections
-
Timely payments causes cash flow problems
-
Need to understand that speech teachers & speech
therapist provide different services
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Clear eligibility standard to continue in program
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Rates that make it possible to provide SEIT services
-
Change reconciliation process to remove reconciliation from rate setting.
Once rate goes down difficult to recover
-
Efficiency rate for SEIT doesn’t work at multiple sites & great
distance
-
Change in eligibility for ESY
-
Clearer guidelines from SED not in gray area
-
Rate methodology needs to change
-
Letters come too late to providers
-
Rate setting process faster so payments can be made
-
Reconciliation should be in current year (vast majority says out with reconciliation)
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Provider should be able to hold on to part of reimbursement (profit of
3%)
-
Methodology should be similar to school district so providers can establish
budget
-
Districts can raise taxes; providers can’t
-
Money easier to come for providers/districts
-
Streamline DOB approval. process if under certain parameters
-
Multi programmatic approvals on same classroom
-
Providers with darkened program makes it difficult to
get approvals ‘ “Fictitious
waiting list”
-
Annual review often happens early – difficult
to project needs for September
-
Parents waiting until July is “evil” (to
determine if eligible for program)
-
Waiting lists cause delays for placement
-
Decision for ESY in June makes it difficult to get services in place
-
Not enough placements for children
-
In North – too few program options
-
Because of lack of services 3 year olds hurt
-
Recent approval process makes it difficult to approve kids
-
Administrative approval. process acts like moratorium on integrated placement
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Services determined made on regression availability rather than child needs
-
Difficult to have new program because of rate methodology
-
Services determined on what’s available
-
Rates should be on budgeted needs
-
Recommendation for a 0-5 system
-
Lead agency should not be DOH or newly created office
-
Lead agency under current system: an Office of Early Childhood under SED
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Some counties not honoring SED approvals
-
Concerns SED issued some single county program approvals
-
Distribution of SED memo re. time child can be on bus
-
Re. 0-5 system:
- Blue ribbon panel of experts to determine what it should look like
- Look at other states
- 0-5 system – Family friendly, more support to families (like
EI)
- IFSP with good elements
- 0-5 & 0-3 unique in each
- 0-5 similar to EI but with contract provider
- EI more medical than family driven
- Maybe OCFS – lead agency
- Lead agency with knowledge of children with special needs
- Providers have had difficulty with behavior intervention through licensing
-
Medicaid is driving services
-
Conflict of interest when CPSE is also CSE Chair
-
Conflicts between systems
-
Lead agency should have diverse group of overseers
-
Has to be money to pay for services which causes conflict – vicious
circle regarding payment & who’s paying
-
State should be responsible for 100% of payment
-
Centralized State payments
-
Question – Would different entity match Fed mandate?
-
Two major overhauls:
- ESY
- County involvement
- Methodology
-
Evaluation process:
-
0-5 could create seamless evaluation process
-
Neither EI or CPSE process pays for meetings
-
O.T. evaluations – current guidelines do not take
into account sensory integration needs
-
Do away with all of it & have universal childcare
with special education services (Government pays for)
-
STAC paperwork – should have electronic submission
directly from school district to SED, by-passing county as intermediary
-
Need to streamline transportation arrangements and costs. Shift transportation
responsibility to school districts (some dissenting districts, especially
smaller ones which must contract for their transportation.)
-
SEIT-lack of providers due to difficulty getting approved and low rates.
Regional rates would be better. Concern re: services paid for but not provided.
Consider fee-for-service instead of enrollment, provided fee considers absenteeism
adequately.
-
SEIT/RSO – need more accountability for services
not delivered, especially when there is a lapse for an extended time
-
SEIT-SEIT not being used to deliver ABA at high authorization levels and
providers can not always deliver to that frequency
-
Consider transporting children to a “central location” for
SEIT/RSO instead of delivering services at home
-
Explore inconsistencies in tuition and SEIT rates across providers in the
same region
-
SED – need better training for CPSE chairs – a lot of turnover – for
districts, preschool may be a low priority, compared to school-age
-
SED – need faster turnaround for payment to counties
-
SED-Regional Associates need better training/familiarity
with preschool as opposed to school-age – frequent turnover
-
SED-need more consistent/clear chain of command for preschool within SED.
Need more specific preschool expertise. SED needs more resources/staffing
-
SED – difficult to navigate SED website for updated
information
-
SED – need better/consistent guidance on eligibility criteria and “appropriate
services” to avoid inconsistencies around the State
-
Implement a “screening” option prior to
referral for full evaluation
-
Need more co9nsistent fiscal & programmatic auditing
of providers and use of learning standards
-
Need more consultation models instead of intensive one on one frequency
of therapy
-
Need distinction between medical needs and educational
needs … difficult
changing philosophies from EI – What is the role of “School”
-
Over identification of children (on autism spectrum/with behavior difficulties)
with high IQs
-
Evaluations – separate evaluation team providers
and service providers (no vested interest)
-
Mixed opinions on school districts as evaluators … need
adequate funding and expertise
-
Confusion re: role of county vs. school district. Need
more clear-cut guidelines re: roles & responsibilities
-
Transition – too many confusing options for time
of transition from EI. By age 3, children should be in educationally-based
program.
-
Providers choosing to provide EI but not preschool RSO due to difference
in rates. EI rates too high or RS rates too low?
-
Streamline transition meetings --- too many/multiple meetings in months
before transition. Some recommendations even have to change as children continue
their development before they enter preschool
-
Entity that “pays” should have “control”