Autism Review

Above all else, human life is valuable in all of its forms, and under every circumstance must be held in the highest regard.

"Nancy Cruzan is obviously "alive" in a physiological sense. But for patients like Nancy Cruzan, who have no consciousness and no chance of recovery, there is a serious question as to whether the mere persistence of their bodies is "life" as that word is commonly understood, or as it is used in both the Constitution and the Declaration of Independence. "

Our society revisited this debate in 2005 with Terri Schiavo. The slippery slope of Justice Steven's opinion was in full view and again there was a debate of what the State's compelling interest was. In this situation some argued that Terri Schiavo was not in a persistent vegetative state. Perhaps more importantly there was again conflicting information about her wishes and who would be responsible for making proxy care decisions.

I don't pretend to know what the correct course was in either of these cases. The point in referencing them is to highlight the cultural debate about life, and when it should be protected, and who is responsible for making decisions. In general I felt that my cardinal principle worked, because if nothing else the decision and action to hold life in the highest regard prevents the State from hasty decisions that can have disastrous and deadly consequences. Ultimately, all kinds of final decisions might be made - but at a core I believe that high regard for life is a preferable cultural value as opposed to a low regard for life.

The debate came home to occupational therapy in 2008 when Dr. Jane Sorenson wrote an opinion piece in an OT magazine where she argued for resource allocation decisions to be made upon the basis of what human potential was possible given 'the reality of a diagnosis.' To me this was a chilling reference to Justice Stevens' opinion and I wrote blog entries about it here and here. AOTA weighed into the conversation when Dr. Moyers wrote to the editor of the OT magazine; it was good to see AOTA take this kind of a stand.

Like all controversies do, all this died down but in the last couple months the debate about value of life seems to be coming up again in our culture. An article recently appeared in the British Journal of Medical Ethics that argued babies have no moral relevance because they can't make determinations about the value of their own lives. We also have the slickly marketed MaterniT21, which is little more than grease for the wheels of the Down Syndrome abortion industry. Fresh on the heels of the release of the MaterniT21 we have the case of Kalanit Levy, whose parents have openly stated they would have aborted her if they knew she had Down Syndrome. Perhaps they think that their $3 million dollar 'wrongful birth' lawsuit against the lab that did their prenatal testing will set their world aright. I am shocked at the concept of 'wrongful birth.' What will happen if Kalanit is provided the supports so that she is able to learn how to read about how her parents wanted her aborted and how she is compared against her oldest brother who "is a competitive chess player and has placed in the 99th percentile on standardized tests." Wow.

So we have some important cultural debates going on regarding life, the value of life, and who determines the value of life. We see doctors and ethicists advocating for the moral irrelevance of infants, we have slickly marketed Down Syndrome prenatal tests being covered as 'preventive care,' and we have parents suing for 'wrongful birth' of their children. All of this follows a slow cultural slide out of the confusion of cases like Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo. In OT we have even heard about witholding services from children who won't make progress based on the 'reality of their diagnosis.'

This is why I support the DSM-V criteria to make autism diagnosis more difficult. Now is NOT the time to want a diagnosis of a developmental disability. Watch out for ethicists, doctors, testing companies that are more interested in profits than moral debates, and a misguided populace that doesn't know which way to turn anymore. Our society is creating this disaster right in front of our eyes.

By my reasoning, at the rate of our current cultural delay, fewer diagnosed cases of autism might actually save lives. The community of people who have autism might go underground for a while and stay safe, at least until we can smack some collective sense into the skulls of this society that is not making sane value determinations.

As for me, I will hold onto my cardinal principle, because it provides a clarity that serves me everyday and gives me hope and reason to serve my purpose as an occupational therapist for all people - including the ones that some people are now considering inconvenient or a resource drain.

There is great risk in taking stands and writing opinions. There is even greater risk in case of being accused of reductio ad Hitlerum - but I take the risk and ask people to remember Martin Niemoller and his poem 'First they came...'

Early intervention and preschool services to children who have disabilities will be scrutinized heavily in the upcoming year and many reforms are being discussed. This summary is a general outline of some of the salient drivers that are impacting reform efforts in New York State.

I strongly recommend starting your reading with the Reforming Mandates, Reducing Costs report that was written by the New York State Association of Counties. This report was submitted to the Medicaid Redesign Team last year to provide input about the unsustainable increasing costs of these programs.

Mandated Medicaid costs are crippling County budgets, and have been for many years. Most recently the State entered into a settlement agreement with the Federal Government often referred to as the State Plan Amendment. This settlement is the contract between New York State and Federal government whereby the State agrees to administer the Medicaid program in accordance with Federal law and policy. This agreement imposed backdated requirements that made it virtually impossible for Counties to receive payments for services that should have been reimbursable as they were compliant with rules in place at the time. This placed a very large strain on this particular component of Medicaid reimbursements to Counties.

Recently enacted property tax caps complicate the situation. You don't need to be an accountant or the County Comptroller to understand that rising costs, lack of reimbursements, and constricted income all spell a recipe for disaster. In short, Counties are being crippled by these programs.

County budgeting staff are at their wits end, and that is why you see proposals from Counties like removing them from the fiscal, contractual and programmatic responsibilities of the program, limiting eligibility to individuals that have greater delays in development, requiring some family financial participation based on income, increasing the County role in developing and writing Individual Education Plans, centralizing organization to the County as opposed to the district level, requiring parent participation for non-working parents, and eliminating contracting/fee for service arrangements because of the inherent conflict of interest with the current system. All of these and more recommendations were made to the Medicaid Redesign Team.

Some of these recommendations are more reasonable than others, but the point in reading this report is that it will help people understand the desperation of Counties.

Providers and parents may not understand these dynamics as well as they need too - I frequently hear calls to contact the NYS Department of Health, or to lobby the school districts, or to make noise in general to their legislators about how these services can not be touched. All of these call to action are potentially misguided. The ability to understand the problem starts at the level of the Counties and their Medicaid budgets and an analysis of the unsustainable growth of these programs and the inability to meet these costs within the current and expected fiscal environments.

You will not help this situation by yelling at your CPSE Chairperson. You have to start with your County legislators and understanding the broad dilemma that they are in.

Readers here are being informed that Governor Cuomo HEARS the Counties and UNDERSTANDS the dilemma. He released his Executive Budget yesterday that calls for some dramatic reform to how these systems are administrated. This WILL have a large impact on service eligibility and service provision - it WILL NOT just be a switch to billing a new entity.

Future posts here will cover the inability to NY State to effectively administrate EI billing, inability to recoup revenues, and inability to effective coordinate via the well-intentioned but very broken NYEIS system, the Counties' calls to the Governor to act on these problems, the rock and hard place of Counties with respect to the property tax cap, and what the Governor's proposals will mean for actual service provision.

This will also include a deep exploration of our own social and cultural values. The large question to answer is 'What is society's responsibilities for these programs.' It will be an interesting ride for the next couple of years as all this plays out.

Stay tuned for ongoing analysis.

I have a longstanding interest in Systems and their impact on our ability to care for people. In 2005 (I can't believe I have been blogging that long) I wrote a blog entry about foster care policy and its impact on occupational therapy.

I try not to get outraged on a daily basis because it makes it a little challenging to maintain focus. If you think about foster care too much though it is hard not to get a little upset.

These Systems are populated by well intentioned and kind people who have to do yeoman's work to make the System run. The problem is not with the well intentioned and kind people who work within these Systems - the problem is with the System creators who have set up a structure that in my opinion fails to meet the needs of the people being served.

That's not so good.

Mental health care Systems are notoriously poorly designed; we have systemic problems like homelessness and poor care coordination and uneven access to care. The Systems are so poor that the American Academy of Pediatrics recommended a model of school-based mental health service delivery. I like the concept, but I am noticing more and more that school systems are ill-equipped to handle mental health needs of children.

The primary point of difficulty that schools have with this kind of service delivery is in the MODEL that is used for defining problems. As an example, an Intake History that I read recently started off describing all of the problem behaviors of a child including lying, cheating, stealing, profanity, attention difficulties, poor ADL compliance, and aggression. Somewhere in the middle of the second page of the Intake was a section with diagnostic information, and it was left blank because the information was not available at the time the Intake was completed. Digging through the educational file, I eventually learned the following:

1. Diagnosis of Dysthymic Disorder, early onset
2. Parental abandonment
3. Possible sexual abuse
4. Multiple foster home placements

This child's story is sordid and would bring most people to tears.

I am stuck because I am trying to understand how we have created a System where the well intentioned people have no MODEL for understanding the nature of the problem. They are just educators, or perhaps people with a B.S. in psychology or a generic human services degree - and they start off with defining the problem as lying, cheating, stealing, etc. etc.

How does that happen?

The System is populated with clinical social workers and an occasional consulting psychiatrist and even an occasional occupational therapist - but the NON-CLINICAL MODEL that is perpetuated causes people to start identifying the problem as the presenting behavior, or by how the child is functioning in the context of the school. Somewhere along the line we have forgotten that this is a child whose parents have abandoned her who has been to multiple foster home placements and repeatedly raped.

If these facts are true, how horrible is it that we have created a System that places the PROBLEM on the middle of the second page (where it was unceremoniously left blank) and only ambitious people who dig through old records are able to find a psychiatric report that lists the REAL PROBLEM??!

To make matters worse we then relegate the care of these abused children to people who do not have enough input and guidance from mental health clinicians. I really don't know where all the mental health clinicians are. I can speak for my field of occupational therapy - only 2% of OT practitioners even work in mental health settings. Occupational therapy has abandoned mental health and moved on to other pastures. Only now is our professional association starting to make some much needed moves to re-insert the profession back into the mental health care Systems.

I suspect that this issue of abandonment of mental health is not unique to OT. Every professional who still has involvement in these Systems has a unique opportunity to educate the Systems on the value of using a more clinical model for the purpose of FRAMING PROBLEMS.

Eventually these Systems need to be absolutely torn down and replaced. They are broken and we need to stop pouring money and misplaced effort on propping up failure.

Unless we are intent on continuing to fail.

I wondered this morning how much writing I have done on various OT message boards and I started thinking that an awful lot of my opinions are probably documented all over the Internet. I visited the forums on the AOTA website and found the equivalent of over 40 single spaced pages of my writing! Then I thought it might be interesting to see what motivated me to post on professional forums this year. Here is a summary of one interesting forum conversation:

The Social Justice Debates

Early this year there was a motion to rescind part of newly adopted AOTA ethics statements; the concern was that they unnecessarily referenced social justice concepts and that the existing ethics statements already covered that conceptual material and did so without politically charged terms like 'social justice.' The new ethics documents includes:

SOCIAL JUSTICE
Principle 4. Occupational therapy personnel shall provide services in a fair and equitable manner.

Social justice, also called distributive justice, refers to the fair, equitable, and appropriate distribution of resources. The principle of social justice refers broadly to the distribution of all rights and responsibilities in society (Beauchamp & Childress, 2009). In general, the principle of social justice supports the concept of achieving justice in every aspect of society rather than merely the administration of law. The general idea is that individuals and groups should receive fair treatment and an impartial share of the benefits of society. Occupational therapy personnel have a vested interest in addressing unjust inequities that limit opportunities for participation in society (Braveman & Bass-Haugen, 2009). While opinions differ regarding the most ethical approach to addressing distribution of health care resources and reduction of health disparities, the issue of social justice continues to focus on limiting the impact of social inequality on health outcomes.

Occupational therapy personnel shall
A. Uphold the profession’s altruistic responsibilities to help ensure the common good.
B. Take responsibility for educating the public and society about the value of occupational therapy services in promoting health and wellness and reducing the impact of disease and disability.
C. Make every effort to promote activities that benefit the health status of the community.
D. Advocate for just and fair treatment for all patients, clients, employees, and colleagues, and encourage employers and colleagues to abide by the highest standards of social justice and the ethical standards set forth by the occupational therapy profession.
E. Make efforts to advocate for recipients of occupational therapy services to obtain needed services through available means.
F. Provide services that reflect an understanding of how occupational therapy service delivery can be affected by factors such as economic status, age, ethnicity, race, geography, disability, marital status, sexual orientation, gender, gender identity, religion, culture, and political affiliation.
G. Consider offering pro bono (“for the good”) or reduced-fee occupational therapy services for selected individuals when consistent with guidelines of the employer, third-party payer, and/or government agency.

My own concern was with the statements "to abide by the highest standards of social justice" and "provide services that reflect and understanding of how OT service delivery can be affected by factors such as..." Here the politically co-opted definition and political twist that is taken with the term 'social justice' was challenging because of the associated statements about distributive justice which is politically charged. Additionally, there seems to be a suggestion that there is de facto impact on service delivery because of certain issues like age, ethnicity, race, etc., and many people object to that assertion. There is no doubt that prejudices exist, but it is not correct to state that there is de facto impact.

My concern was also related to how 'social justice' was being defined in the current American political context. I tried to compare worldwide Catholic social justice definitions to American social justice definitions. Context and degree seem to be overarching factors when it comes to definitions of social justice - for example, social justice from the perspective of a person in a developing country must be very different than social justice in the United States (which has incredible wealth and where even those who are very poor have their basic needs met).

Also, a core concept of Catholic social justice is in how it is practiced - no bigger than is necessary and no smaller than is appropriate.

Anyway, what I am saying is that I understand the Catholic position of social justice because it is a world-wide religion and the concept is being applied to a very broad spectrum of human existence.

That is all very different than the way that the term is being used in the United States as a redistributive economic policy.

I don't think that the OT professions needs to avoid issues that are politically charged, but it does not seem unreasonable to have a core value of inclusiveness so that we are not disenfranchising our membership - and there were some people who were uncomfortable with including this language in the ethics documents. I don't believe it is unfair to ask the appropriate contextual question of ''What does social justice really mean in the AOTA documents' and if it is such a core concept to our ethics - then why is it just appearing now?

This really was not a new concept for people who read here - I covered this material in depth previously.

The larger issue I was driving at in the conversations was "what constitutes OT practice and how do ethics aspirations suggest us into practice areas or into practice interventions that are beyond our mainstream." In many ways that makes them beyond pragmatic use to many practitioners.

I think that people can use their OT skills in many ways - but that does not necessarily make the interventions occupational therapy - even though some people are calling it that or perhaps want it to be.

I have no objection to giving recognition or praise to efforts that further people's health and participation - even when those efforts are informed by occupational science and are not falling within the mainstream of occupational therapy practice.

My concern is that sometimes it seems like we spend a lot of time in this profession playing in the stratosphere. Lofty ideals are fun, but the atmosphere is pretty thin - and sometimes it is nice to get your feet planted back on the ground again.

I believe that we will serve our profession best if our ideals and ethical aspirations have application to the everyday concerns of practitioners. If our ideals and ethics only help us populate an academic playground to see how many different ways we can apply our concepts then I fear that we will have created a great academic discipline - but one that has very little traction in everyday practice.

As a bottom line concern, AOTA ethics documents are included in some state license laws. That means that failure to abide by generic aspirational and potentially vague language about social justice in ethics documents might cause someone to be in jeopardy with their state license. That's not so good.

I did not believe that there was a need to include ambiguous social justice terminology to maintain our consistency of belief that people who have disabilities should receive services. The proposed motion to remove the politically charged terminology rather clearly outlined that nothing is lost by removing the social justice terminology, and instead the objective is to remove ambiguity that is associated with the term.

I greatly appreciated the distinctions that were argued between political social justice and ethical social justice in those forums - but the fact remains that based on a reading of the current ethics statement and based on a reading of our literature that there has not been such a distinction made between these different iterations of social justice. In fact - the two have been blurred throughout all the conversations as well as in the literature.

It was an interesting debate. The Motion to remove the language failed. So now I will continue the 'social justice watch' to see if any of this ended up having any notable and pragmatic impact on practice.

There are a couple important stories in the news today that everyone needs to watch.

In this first story we see an absolute lack of understanding in how a governmental agency responded to an adult who was trying to board a plane with his family:

Dr. David Mandy: Special Needs Son Harassed by TSA at Detroit Metropolitan Airport: MyFoxDETROIT.com

In the second story we see people completely disrespecting and interfering with a Special Olympics activity. It is certainly within their rights to express their displeasure about whatever they want, but sane people would choose a time and place that is appropriate for such a protest:



Lastly, and most tragically, is the continued failure of NYS - all these years after Willowbrook we thought it would never happen again:



It is very clear to me that as a society we still have a very long road to travel.

Sometimes when children progress from preschool to school it is determined that they still need to be classified and receive special education services. Sometimes it is determined that they should be declassified. There is a defined process that is supposed to be followed.

Patrick is a preschooler who has disabilities and if he enrolled in kindergarten last year he would have either continued his classification and received services OR continued his occupational therapy services in the school under a declassification plan for one year. Given his severity of delay he would have also been a likely participant in a summer readiness program designed to help support children's performance when they are struggling with key developmental skills.

The goalposts have been moved again this year. Now there is no summer readiness program and there is no declassification plan. Part 200 regulations governing the special education program in NY State have not changed, and clearly state:

(iii) If the student has been receiving special education services, but it is determined by the committee on special education that the student no longer needs special education services and can be placed in a regular educational program on a full-time basis, the recommendation shall:

(a) identify the declassification support services, as defined in section 200.1(ooo) of this Part, if any, to be provided to the student; and/or the student's teachers; and

(b) indicate the projected date of initiation of such services, the frequency of provision of such services, and the duration of such services, provided that such services shall not continue for more than one year after the student enters the full-time regular education program.

Instead, one local district took Patrick's CPSE referral, tossed it into a CSE subcommittee, and determined that a referral to full CSE doesn't even need to happen. They made this determination based on the opinion of the CSE chair. No evaluations were completed, and the intent of the same district's CPSE was completely disregarded. I called the CPSE people in the district to inform them of what happened and they acted shocked. There is a new and tall 'WALL' being constructed between CPSE and CSE in many districts - and it allows this kind of shenanigans to go on. The CPSE people are conveniently 'protected' by these decisions because they can claim that they have no knowledge of what happens after a child is sent to CSE for referral.

That is about as honest as living in the home of a meth dealer and telling the police that you thought the person just had an innocent chemistry hobby.

If the CPSE wanted to declassify they would have had to do a full complement of evaluations and they would have had to justify why declassification was happening. Instead, it got passed to a CSE subcommittee where the referral was unceremoniously trashcanned. They will argue that it was a fair process that appropriately considered the situation - but that is a falsehood.

Some parents attend their meetings and see this happening with their jaws agape. Other parents do not attend their children's meetings at all and never know it is happening.

I document this for everyone because without the documentation there is no record. If we fail to talk about it and document it then the goalposts get moved every year. Committee chairs are free to work in their Ministries of Truth and throw last years practices down the memory hole, rewriting history and acting as if children NEVER got these services before.

Well children did receive the declassification services before, and they were afforded a correct referral and correct consideration by the CSE. Regulations did not change - they are just not being followed - but the Ministry of Truth wants you to think that nothing is different.

Except I was there last year and I am here this year, and I am witness.

Now you know too.



Reference:

NYS Part 200 Regulations
http://www.p12.nysed.gov/specialed/lawsregs/2001-2005-Mar2011.pdf

I received a referral today for Trevon, who I initially evaluated eight months ago. His mother was concerned about his development and asked the school system for help when he turned three years old. The initial OT evaluation indicated that he had significant fine motor delays and a speech evaluation indicated that he had significant speech and language delays. The school approved speech therapy and a special education teacher but declined the occupational therapy.

Eight months later, I received an authorization to provide services because the motor concerns were impacting his participation in preschool. In the interim months when there was no OT intervention a second OT evaluation was completed which had essentially identical findings to the first evaluation. Apparently, the lobbying efforts of the preschool teacher and speech language pathologist helped convince the district that the OT services were required.

There are many studies that have been completed that discuss the value of prevention and early intervention services for children - I linked a couple good RAND summaries below for primer reading. I wish that we had more sensible policy about child identification - specifically entrance and exit criteria for pediatric services. So much is left to the decision making of committees, and so often the reasoning behind what is or is not approved is impossible to decipher.

In preschool services, a school district has approximately 24 months (between the ages of three and five) to identify children and provide an intervention program. In Trevon's case, this particular district's whimsical decision making threw 8 of those 24 months away. Based on typical patterns within this school district, it is likely that he will be declassified at the end of his preschool career and an additional 1-2 years will pass before he is reconsidered for CSE participation. How much more opportunity will be lost?

There is no doubt that failure to identify needs and failure to provide services saves money in the short term, but in the above referenced studies it is reported that the returns to society for each dollar invested in early intervention services extend from $1.80 to $17.07. The large variability is due to the nature of individuals. For some, early intervention prevents the need for special education services in later grades. For others there are longer term benefits to society like crime prevention and decreased reliance on social safety nets. Short term savings are notoriously shortsighted.

None of this even touches on the subject of the cost to Trevon. In class he is frustrated and now he tantrums when someone places crayons or scissors in front of him. He has the functional skills of an eighteen month old - and now the world is demanding things of him that he can not do. He could have had support, and his family could have received training and education on how to help him, but we have tossed 30% of his available preschool years away.

If there was reasoning behind the school's decision it is not apparent. He didn't qualify before but now he does. We will improve our system tremendously by employing common sense guidelines for related service entry and exit. There will always be room for individual decision making on borderline cases - but real criteria would allow us to appropriately target children who have needs and who would benefit from timely help.

It shouldn't feel so much like a roulette wheel with the likelihood of a child getting the help they need being governed by chance or house rules.

References:

Karoly, L.A..; Greenwood,P.W., et.al. (1998) Investing in our children: What we know and don't know about the costs and benefits of early childhood interventions. Santa Monica: RAND Corporation.

Karoly, L.A., Kilburn, M.R., and Cannon, J.S. (2005). Early childhood interventions: Proven results, future promise. Santa Monica: RAND Corporation.

Money is tight and the new method for getting budgets passed in the NY State capital is to cram everything into emergency budget extensions that the public never gets to see or comment on.

The other method for cost savings is to make rule and regulatory changes that have a public comment period - but it does not matter what the public says because the rules are going to be passed no matter what.

Early intervention providers saw this earlier in the year when they experienced a 10% rate reduction for most home and community based visits. This effectively limits the reimbursement to therapy providers and is driving a large number of professionals out of the delivery system. A mandatory 10% pay cut is significant, and although there were public hearings about changes to the rates and other delivery issues it really did not matter. Fewer providers means fewer services provided - which is precisely what the bureaucrats intended.

A new round of regulatory changes is on the horizon, this time taking aim at children who require speech therapy services and any children who are in integrated classrooms. The new regulations remove all minimum service requirements for speech therapy and they also allow for more children to be crammed into special education classes. Children who have autism are specifically identified as having their minimum services slashed.

The problem with all these changes is that there is no evidence that indicates this is the best way to reform or modify the system. This is pure knee-jerk reaction to a budget shortfall and has nothing to do with best practices. So, as we all continue to pay for waste, fraud, and abuse throughout the system - clueless bureaucrats and politicians sit in their ivory towers and make random cuts to budget lines that they probably don't have any ability to even understand.

The bottom line on all of this is that many schools are quickly becoming a de facto joke of a place for service provision. In most places the inability to effectively manage will cause you to be fired - will we finally apply this standard to the huckster administrators and career politicians who are pretending to manage our educational system?

My advice to parents is to monitor your special education services closely. The system is in a rapid free-fall, but you won't see it reported on much because it is happening in small bits through regulatory and rule changes. Anything discretionary (like summer and after school programs) are all being slashed. Staffing is being reduced and more children are being placed in classrooms. Reimbursement to providers is being cut. Children who previously received services are being declassified.

Families who have resources will use them to seek services privately - but those who do not have resources will simply suffer.

Some of this is a reflection of a tight economy. More of this is related to the New York State Plan Amendment that places vast new restrictions and requirements on Medicaid funding for special education services.

In all fairness, there is indeed a price for the fraud and abuse that has existed in this system for many years - but you do not solve the problem with fraud and abuse by failing to address the real problems and instead placing children in the cross hairs of your budget slashing methods.

The people in power will point to Medicaid fraud and say that budget shortfalls are not their fault.

They are hoping that you won't notice that they are trying to solve the problem at the expense of children who have disabilities.

June 1st is coming - and it reminded me of a particularly sad CSE meeting that I attended a few years ago. There are rules and regulations governing special education in NYS and to some degree there is room for interpretation of those rules and regulations. Parents and districts sometimes disagree on what those rules and regulations mean, and sometimes districts can 'bend' the regulations to accommodate student needs.

In the sad meeting I referenced I sat in amazement as the CSE chairperson approved every single service for a child - and I was surprised because this particular chairperson had a reputation among the parents for being somewhat recalcitrant to parent requests and unfriendly in general. I really didn't expect the meeting to go so smoothly because it was the parent's intent to enroll their child in a private school but they were still asking for special education supports from the school district. There are legal parameters for what a district has to do in these situations and in general it is a complicated process to wade through.

I am infrequently silent in CSE meetings but I sat quietly and wondered if the chairperson had some religious conversion or other change of heart that would lead to such a different attitude. Every service that the parent requested was approved.

As the meeting was about to close and as the parent had a broad smile on her face and sincere thankfulness that their child was going to get everything that she perceived he needed - the chairperson looked at his watch and said, "Oh how unfortunate. Your plan is to send your child to a private school next year, and the deadline for completing the dual enrollment forms was June 1st- and it is now June 15th. I guess we won't be able to provide these services after all because you haven't signed the dual enrollment forms by the specified deadline."

My jaw hit the table at the absolute evil this chairperson just unleashed. "Come back next year," he smirked. "And don't forget to fill out your dual enrollment forms before the June 1st deadline."

So June 1st is coming quickly and parents need to be aware of the date. Enough time has passed that I am able to type this without hurling obscenities - but here is the specific rule that pertains to this issue that all parents need to be aware of:

***

NYS Law:
Students with disabilities who are residents of the State attending nonpublic schools located in the State are dually enrolled in the public schools for purposes of special education and receive services pursuant to an individualized education service program (IESP) developed by the CSE of the school district of location in the same manner and with the same contents as an IEP. Special education services provided to parentally placed students with disabilities must be provided on an equitable basis. Parents must request special education services before June 1 preceding the school year for which the request is made subject to certain exceptions. Parents of students attending nonpublic schools may bring an impartial hearing to challenge their IESP. Requires regulations for procedures for the district of location to recover costs for non-resident New York State (NYS) students.

Federal Law:
Federal law requires that the school district in which the nonpublic school is located use a proportionate share of its Individuals with Disabilities Education Act (IDEA) funds to provide services to nonpublic school students, based on consultation with nonpublic school representatives. Districts develop a Services Plan (SP) for a student that does not create an individual right to services. Nonpublic school students do not have an individual right to services under IDEA and therefore are not entitled to a due process hearing. There are no federal procedures for the recovery of tuition costs incurred by the school district in which the nonpublic school is located for nonresident students, where the services required under state law exceed the federal minimum and require a substantial state and local contribution.

***

Each state has different guidelines and requirements that can exceed but not be less than the federal requirement. I encourage families and providers to be aware of the laws that govern this issue in their own states.


Reference:

New York State Education Department (2010). New York State Law, Regulations and Policy Not Required by Federal Law/Regulation/Policy Revised January 2010 Retrieved May 27, 2010 from http://www.vesid.nysed.gov/specialed/idea/analysis-jan10.html