Long Island Roundtable Notes

Final: Approved 8/30/07

Temporary Task Force on Preschool Special Education
Long Island Regional Roundtable
Site: Nassau Community College
August 9, 2007

If you were not able to attend a Roundtable Session, you can submit your comments to the Task Force at PrekTaskForce@mail.nysed.gov . Comments should be in response to the same three questions asked at each session:

What works?
What could be improved?
What should be overhauled?

Group: Parents

What about the current system works? – Before Meeting

Before Meeting Started – Just a Few Feelings Parents Had

Felt August was a poor time to have this meeting.
The way parents were invited presents a problem
Parents weren’t invited directly – choice was bias who they send here.
Parents feel need to bring ‘all groups’ together at the end.

What Works:

Wonderful that we get services.
Happy we have a system in place.

What about the current system works? - Meeting

Suffolk County has a grant (Personal Training Project) that services can be given in the community. A lot of resources available. It’s for any child with a disability.
Suffolk Autism grant program: child can get intensive services while child is in a pre-school. DDI (Developmental Disabilities Institute) has least restricted environment.
Variety of services great – home or in an agency.
When child is diagnosed with a delay good thing child can get services.
Like – ongoing coordinators.
Agency – Kidz Therapy asked: did you get a hearing test – neurologist – for speech problem – prompt therapy was given and child started to do well. They assessed problem and did well.

What about the current system could or should work better?

ABA (Applied Behavior Analysis) Therapy

New Team leader: had a plan book – property of therapist w/her name on it. Team leader told mom didn’t know what she was doing for the summer. Team leader took book – never saw team leader again. Agency trying to get book from team leader. Parent missed a lot of services for their child.
Parent should go to some kind of training so they know what to expect in the home. Someone from agency should send someone into the home once a month to see what’s going on.

Money Issues

Pay less to CPSE therapists than therapists that are not in the school system.
Parents feel they get less than therapists not as good.

Continuity of Service

Other states: Dept. of Education runs program not Dept. of Health and you don’t transition. You go to your community center. Smooth transition that way.
Autism at young age should be with typical peers, does better (mom felt).

Not Diagnosed Correctly

Educate the parent.
Autism – felt evaluators were not accurate.
Assessment was not consistent.
Had to fight to get services for child through Manhasset School District. Shocking when you pay $25,000 in taxes.

Need to Level the Playing Field – Rich Areas/Poor Areas

Laws in place to serve all. This is a must.
Feel not equally distributed services – ones that come with lawyers get everything.
Why do you always have to cut services?

Transition to School District Not Done Correctly

Paper handed to parent and just look – not explained correctly or there should be a place to go to hear what to do.
Fighting all the time when you go to a CPSE meeting - intimidating to the parent.
Diagnosis should not be a reason for services. No diagnosis – no service – always a battle.
When you depend on school district and they don’t help the parents especially in the summer.
Parents should educate themselves – don’t have service coordinators.
Need training – where can parent go?
Auditor shouldn’t be at CPSE meeting.
So over whelming – want the help – take everything on blind faith.
Need something like a website to follow these steps. It’s difficult and frustrating.
Maybe social worker to help them.
Right program needs to be given to child.
Right agency needs to be chosen.
Have to do your homework – parent is best advocate for their child

Parent Said

Fighting with federal government. Regent responsible for all education 0 to 16. Like to see a seamless program. Difficult for parents to have professional advocacy through the federal government. Children’s Cabinet is getting all programs (19 state agencies) together. Want suggestions formed how best to run this seamless program.
CPSE meeting Parent Advocate - don’t know what role is.
Like to get improved – the relationship with parent advocate.
Child only gets 30 minute sessions, no time in there to talk to parent.
Reference for therapists: CPSE gave list – no rating system.
Calling strangers - don’t know these people.
Give qualifications of therapists.
Not enough funding to cover advocates. They go to the East End – no money to go. Help families to go through the system.
Tremendous problem in the way things are done. Autism – districts provide differently. One district gives home services, another district gives nothing.
Homeless population moving around and children don’t get what they should.
Huge issue because of the funding
The laws written not provided on local level.
Breakdown in the system – need accountability.
Transition: breakdown with EI services/CPSE. When diagnosed with Cerebral Palsy (say child does not have a cognitive delay) might have services in the home but not in the school.
When child is in the system – special needs – there must be a formal training where a syllabus must be provided. Too many inconsistencies. Trained in classroom.
Some providers are good some are not.
District programs vary greatly – material that is covered.
Should have a guideline for services when you go from district to district.
Information should filter down from federal government, state to district to pediatrician.

What about the current system should be overhauled or changed substantially?

Conflict of interest – profit or nonprofit, inclusive, setting and districts decide which agency child should go to. Don’t want to make decisions that go against the school district. Not empowering parents; segregating setting.
School doesn’t support parents, doesn’t fight for them. Teachers don’t speak up, afraid might lose their jobs.
Providers not too good. Instead of huge list, give names in parent’s area or with this disorder. Then parent can ask qualifications of provider.
Home therapy related services – a lot of money spent – ‘services not overseen.’
Don’t help parents find therapists.
Funding (non-profit – public school) get a certain amount of money as another wealthy district gets more.
Has to be more universal. Hurting the children.
Why have transition? Should have 0-5 through EI and that’s it.
State regulations don’t have to send child at age 5, special needs child, to self contained class. Want to hold them back – only can have speech.

Group: Providers

What about the current system works: (keep)

Providers help parents through transition. EI has offered more training, opportunity giving correct information to parents.
When services delivered in school, not home, there is a problem.
We offer many options for services and in a variety of settings.
Not profit provider can provide excellent program and mainstream to school district.
Variety of needs: one service verses many can be delivered by private providers.
Evaluations should remain with providers who do excellent job.
Place of delivery of services more applicable and convenient: home, daycare, school, etc.
Providers deliver a better product due to parent choice/competition.
CPSE chairs to select single, multiple or program services. Parent choice in EI and should continue at CPSE level. We have excellent selection, Variety, etc. Process insures best choice, outcome, parents satisfied and participate in plan development and feel good.
Parent can be intimidated by school district and feel providers support them.
Providers empower parents to secure services.
“I” in IEP is important and individualizes plan for each child so they have a variety of choices.

What about the current system could or should work better? (improve)

Evaluation process is start. Timeline signed at start of testing in New York City; in Nassau County starts at sign-up and would like to see change.
Evaluation process creates different results at each district.
More mandate training for chairs so evaluation doesn’t have to be assessed differently in each one.
All Chairs from different backgrounds need standardized training.
Parent members trained in district, but in other districts can be adversarial or too comfortable.
We present child and supposed to be committee, but no uniformity in who shows up to decide.
LRE (Least Restrictive Environment) not adhered to – one packet to one district – different result in next and can preclude children who need or get what entitled.
Follow LRE model.
CSE staff could provide standards for CPSE.
Parents are set up by others to go in to fight and unable to get to fair process. One would be getting more in another district.
Lack of universal standards district to district.
Time lines vary in each school district
Some school districts delay the process.
One parent registers in February and just had meeting: problems with registering, not completing registration packages, getting evaluated and meeting deadlines.
When a parent first learns services identified, someone should sit down to explain process to reduce problems.
When agency does CPSE evaluation they should go over the evaluation. Not happening before CPSE meeting, team should meet and give holistic assessment.
All members of CPSE evaluation team should meet after completing all evaluations; should then have meeting with parents.
In Florida there was a more cohesive approach to meeting around transition evaluation to plans. (In Palm Beach and worked from a pod model.)
If Nassau County operated as an overall county body: trains, monitor, set standards for chairs.
Who you are and what areas you live in determine whether you get better services.
More state guidance.
More consistency.
Two types: contract and school need to get together to deliver.
Consistency and calendar: each school district - unique calendar and makes it difficult to follow.
Paperwork: at mercy of secretary in each school district – wait for EIP or document. Can’t start until provider gets authorization.
Get CPSE age children into system: doctors don’t know when to refer nursery school, teachers don’t know or afraid to offend parents.
Not enough evaluation sites: can’t adhere due to large number of referrals. (Westchester provider)
Some agencies are training teachers and child care workers to identify children in need.
Counties work in isolation and left to interpret, develop own forms, etc.
When you call the state it can’t give answer because they left decision to county. (Data, forms, decisions should be uniform!!) Need database to enter all information.
Districts slow to give paperwork to agencies, parents get frustrated, child can’t start right away, maybe missing IEP, miss program start date; administration from school district get angry with program.
No fee for inter disciplinary meeting of members doing services in CPSE program or office providers.
Can’t fill CPSE services: therapists don’t want to take case due to lower rate and have to do annual reviews.
Change rate to keep special education teachers employed at center based programs, not leaving for school district jobs.
Agency losing money on evaluations, particularly bi-lingual.
SEIT and related services regionally reimbursed at same rate.
SEIT based on tuition. Inconsistent amounts due to different rules and regulations.
SEIT rules unclear.
Inconsistent to get paid for meetings or not.
EI has reimbursement for team meeting.
Tuition based: no competitive salaries.
Lost COLA (Cost of Living Adjustment) so teachers can get better benefits/salaries on EI side.
Costs rose more than reimbursement – fixed costs rose more than formula fixed rate reimbursement.
Individual provider: fee schedule based on provider experience – private industry does
Contracted agencies have more increases in all areas: rent, paperwork, training, salaries.
Lose best teachers to SEIT rates/programs.
SEIT rates reported to be restricted but not true by regulations.
OT services hard to find and children often go without.

Agencies

If parents cancel session SEIT’s get paid but not for related services. Why?
We have to carry insurance but don’t’ get coverage.
There should be an increased rate if treatment is provided in the student’s home.
Can’t get services in single source.
Look into home or clinic homecare reimbursement.
How come agency reimbursed if child sick but not if parent doesn’t bring them?
Agency reimbursement verses billing for service bilingual rate low group SEIT rate for children.
Can’t get paid in a timely way “prompt payment” program should be adopted to avoid inconsistent/late payment.
Need a property package so you will be aware of what the school district will approve.
Consistent guidelines to spending money.
Same related service rate should be raised.
Need better funding for 1:1 nursing.
Evaluation rates: better rates and rates for observations.
New guidelines for school psychologists.
Attendance at CPSE meeting: should be reimbursed, also team meeting.
Look at all areas to reimburse.
STACS hold up process: wait on school district staff to start process.
Have to have loans to bridge money, save money, hundreds of thousands to borrow to cover costs.
Unforeseen expenses can cause a provider to go over budget.

Transition

When child age out end of December no spaces in programs or services.
Backlog of fall birthdays create waiting lists.
Open temporary classes from January to June and then close/transfer to Sept.
If you add one child it changes reimbursement rate lower and not worth this.
Have service coordinator through CPSE to provide support and guidance to help parents transition (take to see schools). Help parents see what delivery model would be needed/appropriate for 3 & 4 year old.
Parents want program at school and then at home. After school services confusing as to how given out.
Full team and service coordinator for parents: help in all aspects, develop curriculum for parent trainer. Get support in choices, needs, etc.
Children coming to CPSE without EI have no information or education.
Define parent training: need session or meeting to guide parents, state objectives and map out plan, educate parent (transition module meeting).
SEPTA: parents can join to get information.
Parents should be trained to follow through.
In New York City they have parent meetings. In Westchester - regular parent meetings.

Discussion

Difficult to deliver parent training due to busy schedule. Possibly put in beginning of delivery of CPSE services.
Social Worker underutilized and could be part of parent education.
Social Worker rates low and search for play therapy services for one year.

What about the current system should be overhauled or changed substantially?

System not flexible each year (1/2 or full) to go with applications that come in.
Need to add or close.
Session time: Florida more flexible about sessions.
Schedule of CPSE meetings based on annual review date if possible.
No flexibility in classes so children who are eligible have no IEP.
Current formula maybe too restrictive – more flexibility in duration/frequency.
Changing an IEP too restrictive and no ability to grade services.
60 minutes to 30 or 30 to 60 minutes?
Put change in hands of provider.
As more restrictions/laws in place agencies are having difficulty in being flexible.
State Education and DOH split system and should be in hands of State Education like other states.
NYS Certification: hard to find teachers in both programs.
Pay for CPSE observations.
Not clear on all current issues, so before fixing find what’s working and what’s not.
Salary different, more equitable whether at home or center.
Westchester has a good model including bilingual services. Bilingual underserved and lost TSHH (Teacher of the Speech and Hearing Handicapped) which provided a lot of help. Consider consultation rate with family 1-2 month(s).
Increase reimbursement rate.
Increase calendar year, more flexible and include weekends.
Summer services: cut this year children in Head Start with no services all summer.
CPSE chairs asking evaluators to write goals for IEP.
Evaluators are not paid for CPSE goals. The Chairs should write goals at CPSE meeting.
If you develop goals on your own parents are not included in creating them.

Group: Counties/School Districts

What about the current system works?

Good array of services.
Use of LRE.
County representative at committee meeting helpful for CPSE.
Enough providers to cover the different services.
Good relationship with State Education office.
Move towards services provided in integrated setting.
County meetings with school districts to improve services and discuss issues.
EI and Preschool work together to ease the transition process.
Providers work for both EI and CPSE.
Good relationships with providers to share guidelines and regulations.
County reps at CPSE meeting are informative about transition.
Proper use of SEIT is helping children function in community setting.

What about the current system could or should work better?

Limited input from service coordinators and providers at CPSE meetings when transitioning.
Keeping providers up to speed with current guidelines.
County is funding CPSE programs but have limited say in deciding services.
County reps should attend more CPSE meetings.
More county staff needed to attend meetings (CPSE).
Due to high caseload service coordinators are not able to attend all CPSE transition meetings.
Inability to contact EIOD for transition meeting by phone.
Providers who do EI do not always do CPSE. Families have to re-establish a relationship with a new provider when transitioning.
Districts are spending monies above and beyond what is reimbursed by state and county for administrative functioning.
Seamless transition from EI to CPSE to CSE, due to different regulations at each level, is not possible.
IEPs and recommendations for transition from EI to CPSE are happening many months before child is actually transitioning. A second meeting is frequently needed.
A three and out system would avoid additional CPSE meetings.
Summer services are challenging for CPSE as it is necessary to show substantial regression to authorize these services.
Providers are doing evaluations and then the services. It is ‘self serving.’ This is an issue with related services and programs.
Parents want excessive services in typical community programs (SEIT).
Not enough space in CPSE programs for children who need a full day.
Suggestion to allow half day program to become full day program.
Overuse of SEIT services at CPSE level creates a problem when they go to CSE.
Expectations of a CPSE meeting are being influenced by EI providers and can create an ‘adversarial relationship.’ EI providers are telling parents what to request when they go to CPSE meeting.
Inconsistencies between districts in what services they are offering children.
We are not meeting the needs of children on the autism spectrum if programs are not being allowed to develop. SED needs to review regulations regarding children on the spectrum due to higher numbers of diagnosed children.
Westchester County has similar issues to Nassau and Suffolk.
At times there are many SEITS in the same room in typical community programs.
Parents are asking for ‘Wrap Around’ services (24/7) in CPSE as they received in EI.

What about the current system should be overhauled or changed substantially?

More programs need to be developed for children who are diagnosed on the autism spectrum.
There should be a Birth to 3 System. 3 to 21 should be a district program. District program would be financially responsible for 3 to 21.
There are capacity issues for providers and programs for bilingual children.
Regulations need to be modified for a 3 to 21 district responsibility i.e. there is no ‘504’ regulation for preschool.
We need funding for UPK that includes support services.
UPK (Universal Pre-Kindergarten) funding is dependent on “BEDS DAY.” There is no funding for children who come in after that day.
It is recommended that county funding, which is paying for CPSE, should go to school districts to support their programs for a 3 to 21 system. This would create a more seamless situation.
Concern for ‘over-identification’ of children on the autism spectrum.
Use of Medicaid, OMRDD (Office of Mental Retardation and Development Disabilities) support programs.
There is no continuity between districts in authorizing services.
Better mandating of training by the SED to foster continuity amongst districts was recommended. Professional sharing and case studies to be at these trainings.
Children in Head Start and Community Services overlap districts but providers don’t overlap districts and may not provide for a variety of children in the group.
School districts are not sending STAC forms to the county in a timely manner to be able to pay providers for their services. This is causing providers to contact a variety of government agencies and media to complain.