Final: Approval August 24, 2007

Temporary Task Force on Preschool Special Education
Rochester Regional Roundtable
Site:  Monroe Community Hospital
August 8, 2007

Group:  Parent

What about the current system works?

• One of the most important things was having the service coordinator come to our home, work with us, and explain what was out there.  Helping to direct parents to what is available.  Would like the service coordinator to take a more important role.  Did not have all the options explained to them.  I wished the hospital had told us about organizations like the Advocacy Center.
• Early Intervention (EI) was a positive experience (group agreed).
• If a child is struggling, the first person who is contacted is usually the doctor.  They are often lacking in the knowledge and options for families.  Some were very knowledgeable.
• Getting into the system was a barrier (waiting lists, getting through to a person, referrals were made to many places until finally getting to the appropriate agency).
• Only reason we got into EI was our father-in-law was a retired Committee on Special Education (CSE) Chair.
• Families are willing to make the call if they can just get someone to answer the questions. 
• If child has a definitive diagnosis, it is an easier route into EI.
• Parent with background in special education obtained the majority of her information from a group like Flower City Down Syndrome.
• It is friends, family, and dinners with friends who gave information about what was available.
• Pediatrician stating she is ____   months old do not worry.  Give her more time.  Once she got the diagnosis, she was in. If you have a child who is just “delayed”, it is more difficult.
• My son was floppy and low muscle tone; parent's mother said he seems kind of floppy.  Went to doctor, who agreed, and everything flowed.  Met with the county and my son started services quickly with a fantastic provider.  Independent provider who also worked with the Kirsch Center.  Later contacted the Advocacy Center and Rochester Early Childhood Direction Center.  Then contacted other organizations like Parent to Parent.
• Other areas do not have the support that we have in this area.
• If it is a very apparent delay, great.  If it is social-emotional (volatility, ADHD, tantrums), may be pooh-poohed away saying they will out grow it.  Needed evaluation and diagnosis may not happen.  Have gotten EI and some things, but not full array to address the social-emotional needs.
• I was very fortunate that the service coordinator was knowledgeable.  She also knew I was very particular.  I picked Finger Lakes Developmental Disabilities Services Office a year ahead of time.  That service coordinator met with me and the transition team from EI to Preschool.  The training of the service coordinator is crucial.  Personal touch was important also. 
• I have a wonderful service coordinator through X and that is why I am here.  I wanted to get her Medicaid.  Now the state is telling us that we cannot keep both service coordinators.  The hand-off did not go smoothly. 
• In summary a valuable service of EI is the service coordinator.  It should follow-through to Pre-School.
• The developmental needs of the child do not stop.  EI has a valuable family focus.  Pre-school focuses more on educational needs.  EI does more to listen to parents.  Monroe County has good caring providers.  There are still a lot of bureaucratic barriers.
• A lot of children with autism do not get the diagnosis until they are 3 or 4-years-old.

What about the current system could or should work better?

• One suggestion is a training of service coordinators.  She would have worked better if she had more training and knowledge.  I am a school teacher.  I do not understand when I hear that the family is not the focus.  It is the educational goals.  How all of a sudden, my three year old’s goal is to prepare for education?  I do not know why the focus is not the family and the child's life.
• A lot depends on the program and services.  Being able to integrate those into unit involving the parents.  The program required parent classes and said we have to do these things together.
• My son did not receive services until he was four.  My doctor said I should send a letter.  I have not been able to send that letter because I was furious. The program he got into was encouraging and worked, but at five we hit a wall.  I had a Committee on Preschool Special Education (CPSE) meeting, five minute break, and Committee on Special Education (CSE) meeting.  You would not have known they are the same people.
• It depends where you are as to whether the preschool was family oriented.
• We went to a Pre-School program that was excellent.
• Pushy works.
• Have a developmental perspective works.
• My beef about EI was transportation.  We transitioned to preschool that was not in his community.  His program was wonderful, but it was in a separate setting.  The school age program was not ready.  They did let another year of preschool even though he was school-age.  We have a lot of things in place, but there is still a bureaucracy.  I do not know what the answer is.  Is it having one system birth to 21?  We do not know about the Direction Center and Advocacy Center until we need them.  The EI Service Coordinator was able to provide service beyond the transition. 
• I have three points.  My son is in the midst of transition.  It is a huge transition at age three. They cannot have the same providers.  We had one provider look into it, but there was huge paperwork.  The preschool providers have to get to know him again.  Most of what will happen is at school, but there is no guarantee of our involvement as parents. The school day is only 2 and ½ hours long.  It would be great to have a five hour program where the kids can get more then the social time.

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

• Behavior plans are important.  At EI they are not there.  There is no consistency.  This is a huge issue for my son.  Going into preschool, first year was horrific.  There was a lot of turnover.  They have a new speech teacher.  Transportation issues were there.  We got extended school year because of regression.  If someone is providing summer services, they should be there the entire six weeks.  I just presented a Strong.  I suggested team teaching, but it was not allowed.  This would be a solution to the turn-over issues.  Parents are in the dark about a lot of stuff.
• I want to make a quick suggestion.  Nothing in day care about EI.  Saw signs about 292  Baby.  I never called 292 Baby, but signs about services would be helpful. 
• The state has done a transition conference.  I was the only person who knew about it.  I did because of RECDC and the Advocacy Center.   My son is not transitioning until ****
• All of the information we have heard about transition from EI to Preschool has us scared.  We are proactive, but we cannot overcome this hurdle by ourselves.
• The need to create education in the community would help us to de-stigmatize disabilities.  On a preschool level more education is needed to help families know what it means.  There is a creation of another family beyond the immediate family.  We would not have to hide away.  When we come out to support groups, we know there are those who understand.  It becomes a community responsibility to advocate.  We need to think about community programs that address the other part of the half day.  How are those other service providers/programs able to accommodate the child in that other part of the day? 
• There all kinds of things that work well.  They are not all working well together.  292-Baby is an 18 hour line to get help.  There are all kinds of things that work if people know about them and the system responds to them.  We put together a video, but some of those meetings were horrible.  They do not do it the way it is supposed to be done.  They did not get services, e.g. integrated services, because “That is not the way we do it”.  
• What worked for my family is that I kept my EI providers and I planned ahead.  My daughter went to a school setting that I trusted as a family.  The Least Restrictive Environment (LRE) for my daughter is a typical preschool.  The CPSE would not pay for that.  We have the means to pay for that.  Every one of my child’s goals is school related.  Why can’t a LRE happen unless I can pay as I am doing?  CPSEs’ needs to step up.
• One of the things we do as Parent to Parent is to create a fact-sheet.  I challenge the Task Force to come up with fact-sheets.   If they had a fact-sheet with numbers with lists of general supports through the state, the local advocacy organizations.  Parents need this information.  It is the first big step.
• There is a parent’s guide through VESID, but parents do not have it.
• Would it be advantage to have a zero to six? Some positive responses.
• Who would be the lead agency? No answer.
• New person:  Why not extended school year for all?  Teachers have to fudge regression.  For my son it is behavioral regression.  If we take him out, we are in deep doo-doo at home. 
• The nurseries, Neonatal Intensive Care-Unit and Pediatric Intensive Care-Unit should have this information.  Public Libraries also.
• For the regression question, it is almost like you have to make your child worse.
• For summer school, it seems that the goal is maintenance.  Why is that?
• For some children, inclusion is important.  We must keep a variety of choices.  Music therapy was good.  Music Therapy is recognized by pre-school, not EI.
• The earlier you get services, the better the long-term.  Pre-school is important.
• We are lucky in our area, but there is a trend with the number of children needing services.  Our colleges and universities need to promote professionals serving the preschool children.  Where are the systems tracking the children and where the needs are?  There need to be planning tools in place to plan ahead.  School Districts need to know that there are “50 kids with autism” coming into their system.
• Districts are not looking ahead to children who will later be 70 or 80 years old.
• Strong reaction against school districts being responsible for all (birth to 21).
• Transportation is an issue.  Mini-vans transporting kids with little signs.  I was almost read-ended by truck when I was stopped behind a min-van.
• From a provider's perspective, it is frustrating to make that connection to school districts.  The school districts need to be engaged.  There needs to be a forum so they can hear this.  From our perspective, there is a need for advocacy or some sort of service coordination to help with the transition.
• We do distribute fact-sheets, but it is hard to get into doctors’ offices and get the information there (in hallways, etc.).  There is a money/budget and staffing issues to get that information out.  We have used volunteers.   At Camp Hacomo, we are having a day for parent support (with a variety of disabilities).   
• Most of the parents that our agency work's with are older.  They struggle at school, but now the task is harder.  It is different from kids identified with clearly identified disabilities.  We need to work with all systems to have people understand the services available.  Doctors are the first resource people turn to.
• Two main points.  Something needs to be done at the statewide level to encourage therapist to work with parents.  We need to get people interested in teaching at a pre-school level.  The therapists and teachers need to learn how to interact with the parents.
• X group has been important.  They have responded to proposed budget cuts.  It took us awhile to do it.  The Council has been watching. 
• We are all involved with our kids.  Many of the parents are involved in organizations.  I am a member of a school board.  Many parents do not come to meetings and do not know what to do.  We are squeaky wheels.  The kids that suffer are the ones with parents who do not know.  The county sits in on every meeting.  The funding has to change.  The schools should not be held hostage.
• I have been doing this for almost thirty issues.  Many/some of the issues are the same and this is distressing.  This has been an important discussion (both positive and what does not work).
• There is not a Commission on Quality of Care for Education.  We have to do better.
• Going from EI to preschool, my daughter did well.  Now they say she has to fail at a specific level (33%) to qualify for services at a preschool level.
• We need to advocate together for an investment in our kids.
• If we have to privately pay as a parent, it is extremely difficult.  Insurance companies point a finger at the school district, and the district points a finger back at insurance companies.
• Call the Direction Center in this area.  They know these things.  You have a resource here.

Group:  Counties/School Districts

What about the current system works? (keep)

• Kids and families come first!
• Involvement of the family
• Evaluation teams are specialized and strong in early childhood. (able to evaluate)
• Flexibility of evaluators (parent choice)
• Accommodate rural areas
• Continuum of services
• Different locations where services can be provided (community, preschool programs, etc.)
• NYS advocates for integration
• Able to transport children to program
• Pre-K servers 4 year olds
• More parents’ enhanced skills (advocacy, etc.)
• Some children have same service providers in EI and go with same provider in 3-5 (Cost effective)
• Voluntary
• Quality of services from providers in EI high-carries over if also provide services in 3-5
• IEP – chart used by all CPSE’s
• Counties have option of who to contract with
• Ability to bill Medicaid
• One-two UPK system integrates with special services children (Pre school district) More seem less for child going into kindergarten (Greece has UPK and small county)

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

• Hard to pick 1 of 14 evaluators – family (guidance to parents in which team to choose for evaluation)
• Look at outcome has
• Disjointed billing system (state, county, 3rd party, Medicaid requirements)
• UPK –some providers change or too many providers/classroom. District would benefit to be approved Universal Pre-K provider.
• In Universal Pre-K – can’t serve 3 year olds
• County more say or less payment
• EI, 3-5, 5-21 – more is better not a good philosophy
• Sometimes evaluations 2-3 times in a short time (expensive, is it necessary?)
• Findings poor – wide variety in child with autism  - 5 provider agencies could present 5 different provider agency’s meeting child’s need or providers need (finance)
• No incentives – waivers
• Worry about shortages (history OT – push children into classroom shortage)
• Too many changes in EI  - example – service coordinator
• Other services – counties direct different – PHCP, CSHCN, Medicaid management
• Myriad of services available – how to make sure you’re sending family to the right place
• Family focuses is essential birth -21

What about current system should be overhauled or changed substantially?

• Single point of entry – rotate evaluation teams
• Parents look into evaluators and choose before signing papers.
• Transportation – overall – very, very expensive
• How Pre-K can include 3-3 ½
• 1 billing system across the state
• Integrate 3-5 and Universal Pre-K
• Responsibility for everything including fiscal to go to school districts – (3-21 services) Pre-school is not mandatory
• Merge EI and 3-5 (birth – 5)? Have it under state Ed.
• Transitions: EI to 3-5 and 3-5 to schools very cumbersome
• Need to have some control – not opened end system
• Counties and CPSE’s communicate fiscal pieces and if services are appropriate
• Look at absenteeism rates (limits)
• Look at other state: 0-5 systems, 3-5 services
• Merge 3-5 (preschool) into 5-12 (school)
• Remove financial Cap
• Universal Pre-K for ALL districts in NYS
• Make sure wrap around services work in the school districts (child care, etc.)
• Child care is not the same as Pre-school services
• If State Ed has responsibility then they also pay for it (not counties) use state aid funding formula
• Look at child holistically – EI – family centered, 3-5 – educational focused
• Build a way to extend capacity when needed in 3-5 services
• Three is three! (change state regulations)
• Suggest 0-21 = 1 system
• Look at/define parameters eligibility – 25% delay child  50% delay – do they get same services? – a lot of variability’s

Group:  Providers

What about the current system works? (keep)

• Range of options in Monroe County
• More chance for input because of pre transition meetings
• Dedicated and highly trained people in preschools in region
• Collaborations starting to occur between early childhood centers, programs, service providers
• Word is out about advocates in Monroe County
• Great pockets (not consistent) where have true integration integrated programs
• Collaboration of smaller counties to review forms, materials, offer consistency regarding policies and procedures
• Recognition of school districts  to value of early education
• Processes are smoother now – if move from district to district , county to county
• True collaboration among providers – not antagonistic, self-centered
• Service coordinators are good at planning far ahead to help families
• Successful with student outcomes
• CPSE chairs for most part are helpful to Service Coordinators to help plan ahead for families
• Good positive feedback on evaluations
• Very few families who come back and want to change providers
• Input to various organizations regarding specific guidelines, help from State on this has been good
• Extra funding for children with IEP’s get extra co-funding
• Pediatric links program has really helped to improve pediatricians response to EI

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

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

• Fragmentation of systems, needs a complete overhaul; need to look at funding for all, not just children with disabilities
• Wants a 3-21 system where fiscal agents is responsible for all
• 3 is 3 – problems with early birthdays, then need additional meetings
• Look at how school years impact on children, hard to find at odd times
• Blend 2 systems – DOH/State Ed. – needs to be State Education
• EI looking at medical problems vs. an educational model
• Extended school year – seems to be a shot in the dark; recommend a 12 month school year
• 12 month program; preschool is optional
• Thinks a 12 month program would be hard to staff but some programs have more people than need
• Need to answer what is developmentally appropriate – in old days, we were able to choose this – need a mechanism to allow this rather than substantial regression
• Preschool children are not like school age children
• Kids new to 3-5 system (not in EI), can not get services
• Wants a birth – 5 program – not a 3-21 program; DOH should be overseer. Need to look at families up to age 5
• Rate system badly flawed; doesn’t recognize differentiation of services; need to look at staffing, extent of services. RATE SETTING HAS TO CHANGE!
• Have an unequal system in 3-5; need to treat these as we do 5-21. Not paying for regular educator but we do for school age. Have some semblance of this in Universal Pre-K.
• Smaller number of special classes; rates requirement for preschool are not same as day care. Needs to be a much smaller ratio
• Drawing a line at 3 is just so arbitrary, those kids late to EI are being pushed out into another system
• Seamless birth – 5; all children should have 12 month program; capitalize on child’s brain development
• Provider – extra meetings (CPSE +) are not reimbursed
• Need to have outcome guidelines explained better
• Social emotional pre-school is so important and yet we are education driven. Make this a strong piece of performance outcomes – this needs to be seen as a disability
• How we work with children with mental health issues must be a priority. These kids don’t qualify because bright but what can we do when these kids don’t get services and need it
• FBA’s are to do this but problem with these
• No understanding of FBA’s – who can do, how, and what to do with results
• Fiscal piece to do this
• Lots of inconsistencies on how a child is evaluated, assessed
• Only one preschool in Monroe County for children with mental health issues – a real problem
• Need same resources across the State
• Preventive techniques should be taught in the colleges – then don’t need to get to restraints
• FBA’s should follow child wherever he/she is – need fiscal piece to do this
• Need to get pediatricians on board as well for these emotionally challenged children
• Co-determines need, would be great to not have to go thru overwhelming State Ed process
• Classrooms already struggle, need to reach capacity to pay bills; this will be a huge issue of agencies can just go ahead and open a classroom
• Can’t be willy-nilly opening a classroom but does need to be a better way
• Pediatricians jump to medication for mental health issues but don’t reach out to community to see how it’s working
• Need to tie together all the regulations – such as disabled children.
• Big issues in outlying counties because of fiscal problems – BOCES closed in Genesee and Wyoming after 20 years of services. Cannot get providers to offer services such as related services.
• Maybe need ways to entice providers such as loan forgiveness especially rural counties
• Problem with State Ed and Special Ed requirements – Birth – 2 certification
• Can’t compensate preschool staff like they do for school age but they still need to meet State Ed regulations
• Rates in preschool are not the same as in EI
• Maybe look at a Bureau of Children’s Services – Universal Pre-K preschool, maybe start all over. Take pieces of what you like and put together.
• Parents are left out of education process
• Genesee County – County rep runs the meeting, calling the shots, send kids to agencies/friends they are connected with. Also experiencing this in Steuben County. County rep makes all decisions.
• Need panel presentation on scope of practice everyone who has hand in system
• County pays the bills but cannot have any expectations of CPSE chairs; so there is consistency across districts
• Rate setting not considering broad range of services – just think preschool as only a classroom
• 3 is 3 – suggestions:
  • No openings for those early birthdays, could be a long gap for services
  • Maybe follow 12/1 like we do for kindergarteners
  • Need to look at children developmentally – lots of chairs who believe kids should be in a classroom regardless of development
  • Doesn’t mean just a classroom
  • Not universal the way CPSE chairs look at classrooms
  • School needs to be ready to adjust to child at their level not child needing to be ready for a classroom, bringing kids in to a classroom may not work – not enough staff, training on how to work with these kids. These are ideal situations.
  • Decisions need to be individualized
  • Define what the purpose is – get them ready for school provides services? Maybe we need to look at this.