Autism Review

This is a common question that parents ask this time of year - many children are having their annual reviews and determinations are being made for eligibility. In an interest of making sure that all families are aware of their rights, New York State does things like releasing the new translation of revised procedural safeguards into multiple languages.

Families might want to look elsewhere for information about how eligibility determinations will be influenced in the future in NY State. In addition to focusing on translation of procedural safeguards maybe the Department of Education and Department of Health and the Governor's office should be more clear about new funding methodologies that are being considered.

I will attempt to demystify what is going on because I don't see that they are informing the public in a particularly clear way.

Last year Governor Cuomo held meetings around the state discussing plans for redesigning Medicaid. I was really hoping we would see some opportunity for impacting service delivery concerns like entrance and exit criteria, consistency in eligibility standards, and promotion of evidence-based interventions. Instead we are getting another year of smoke and mirrors widget counting in a hope and prayer to eke more money from the federal Medicaid till.

Currently, the SSHSP (Preschool/School Supportive Health Services Program) rates for services in schools are set at 75 percent of the mid-Hudson Medicare rates. The government allows several methods for coming up with reimbursement rates - either as a percentage of the Medicare rate or based on commercial rates or based on actual costs of providing the services. Apparently someone is of the opinion that there will be more money available if we start doing time and motion studies and ask for reimbursement based on actual costs incurred.

Proposal 13 was discussed last year as one possible way to realize more Medicaid revenues and was introduced as part of a larger plan to control the Medicaid budget. This proposal led to a a Request for Proposals that was announced last summer to bid on the project entitled "Cost Study and Implementation of Revised Reimbursement Methodology for the Preschool/School Supportive Health Services Program (SSHSP)." The RFP asked for a vendor who could deliver a cost study to determine whether current reimbursement for preschool and school supportive health services furnished in school districts, certain schools, and counties in New York reflects the actual cost of service delivery. The vendor also has to implement a Certified Public Expenditure (CPE) reimbursement model to enhance Medicaid reimbursement. At some point in time that contract was awarded to Public Consulting Group.

NYS released a Medicaid in Education Alert on March 1st regarding implementation of random moment time studies for the new CPE reimbursement strategy. That means that your OTs and PTs and STs will be documenting what they are doing on a daily basis and there will be more reporting requirements heaped upon providers. More concerning, there will have to be data sharing regarding salaries, fringe benefits, contract costs, equipment costs and more bureaucrats hired to track all the data. Then there will have to be some kind of formula for making sense of the very wide variety of ways that costs are incurred (direct through district salaries, billed out to BOCES, billed out to private contractors on all kinds of methods (per pupil, per service, etc.)). Given the inconsistency in cost outlays it will be very challenging to come up with a sensible cost per unit figure.

What will all this mean? The state hopes to get more money out of the federal till - and they are banking on the fact that their cost per unit will exceed the current 75% rate based on the mid-Hudson Medicare reimbursement. There will be more bureaucrats hired and there will be more number crunching to make sure that our costs will allow us to get the most possible money from the Feds. However, costs won't be allowed to go too high because that would mean that the State would have to send excess reimbursements back to the federal government.

In sum, systemic decisions about breadth of special education services will be made in accordance with maximizing federal reimbursement. Your districts will grumble about hiring more bureaucrats. Therapists will grumble about completing time studies. Agencies will grumble about having NY State stand on their necks until they release confidential or proprietary employee data on salaries and benefits.

You will go to your CSE meetings - but now you are armed with information on what is driving all of the 'reforms.'

Quality indicators are monitored when public monies are used, such as for Public Law 108-446, the Individuals with Disabilities Education Act (IDEA) 2004. The act mandates that states develop and submit a six year State Performance Plan (SPP) to the government. For each of the quality indicators that states report on there has to be improvement activities and targets. The idea of all this is to drive improved quality within the system

Quality indicator 7 for preschool services requires that a percent of preschool children with IEPs demonstrate improved positive social-emotional skills (including social relationships); acquisition and use of knowledge and skills (including early language/ communication and early literacy); and use of appropriate behaviors to meet their needs. Performance on this indicator is assessed using standardized tests after children have participated in their preschool program.

The SPP requires that exit assessments only need to be conducted for preschool children with disabilities when they stop receiving preschool special education services due to program completion or declassification during the school year in which the school district is required to report exit data on this indicator. Annually, NYS requires a representative sample of one sixth of the school districts in the State to report progress data on this indicator. When a district is not required to report exit assessment data it is common that the district DOES NOT APPROVE requests for exit assessments. Also, terminating availability of declassification services by allowing EVERY child to simply age out of the program also negates the procedural trigger for exit assessment.

The sum total result is that children complete their preschool services and unless the school happens to be mandated for data sampling in that given year there is a really good chance that there will be no exit assessments. When there are no exit assessments that means that the CSE has no hard data to consider - and eligibility for that system is constricted. Also, parents are left in the dark not knowing the actual status of their child's progress as measured by full assessment.

Basic standards of practice would dictate that a therapist would want to have some kind of reasonable assessment data to make determinations about progress made, recommendations for future eligibility, and for feedback to families. Basic standards of practice are compromised by these policies.

School districts blatantly disregard basic standards of practice in favor of ONLY following the bare reporting requirements of the State Performance Plan. In the mail today I received a notice that read as follows:

The above mentioned memo advised you to request full evaluations for students you are considering for declassification. However, because we are not reporting on State Indicator 7 this year, you do not need to request a full evaluation for students you are declassifying.

What happens on the street is that very few children are referred directly to CSE - unless it is VERY obvious that they would have eligibility due to notable diagnosis (cerebral palsy, autism, etc.). In truth, very few children have such severe diagnoses and most kids who receive special education services have 'softer' developmental delays like learning disabilities, attention deficit disorder, or other problems that are often relatively less severe. This causes most children to 'age out' of special education, never receive a full exit assessment (unless the state happens to be looking for data that year!), and they are not again picked up on the elementary school side until they are failing in first or second grade.

I can't comment on the heart of the people who write memos indicating that there shouldn't be exit assessments since the state isn't looking. However, I can state that it is odd to dictate your practice based only on the likelihood of whether or not someone is watching your conduct at any given time.

One would hope for a more universal standard of 'appropriate practice.' In my opinion, any preschool child who has been receiving services should receive periodic reassessments to measure progress, particularly if they are at the terminal point of their preschool participation.

How can we recommend declassification services, and even if they were approved - how can anyone know what still needs to be worked on unless we have good assessment going on?

How did we get to this point? There are groups lobbying for even less oversight of the 'declassification' process for preschoolers. Professionals working in school systems need to understand that pressures for 'reform' are driven primarily by municipalities and counties who don't have the funds to support programs any longer and also by special interest groups representing school business officials who struggle with the challenge of meeting standards with a shrinking resource pool. When you hear the words 'mandate relief' you have to understand that this has absolutely NOTHING to do with what is professionally/educationally appropriate but it has EVERYTHING to do with what districts can afford.

I never thought that outcome assessment could be considered a radical request - apparently it is if the State isn't looking for data that year. But here we are.

Please reference an entry earlier this year about seat cushions.

I am essentially re-posting that earlier entry but replacing 'seat cushions' with 'weighted vests.' Let me start this post with congratulations for Amy Collins and Rosalind J. Dworkin who wrote an excellent article in this month's American Journal of Occupational Therapy.

Here comes some mildly edited cutting and pasting from the previous entry - and I will take the liberty of copying my own writing because the issue is identical and this entry will likely be searched separately than the seat cushion entry!

I encourage everyone to open up the current American Journal of Occupational Therapy and read 'Pilot Study of the Effectiveness of Weighted Vests.' This is a fantastic article that looks at the issue of whether or not weighted vests were effective at promoting attending behavior.

I think this is a fantastic study because it take a very common OT intervention and puts it to the test. For many years OTs have been dispensing weighted vests to children in classrooms based on the thought that the vests provided calming/organizing sensory stimulation that would promote attention . This has been done for so many years in so many settings that it becomes a common request from teachers who don't know what to do with children who have attending difficulties. How many OTs hear the request "Can we try to see if a weighted vest will help?"

We have precious little evidence that weighted vests do anything at all for children - and the lack of evidence is reflected in the fact that this intervention is barely mentioned in some common pediatric occupational therapy texts. However, given the formulaic and mythical popularity of the intervention you might think there would be more supporting research!! Now we have a series of recently published articles that when considered in total indicate very little evidence for using weighted vests.

For additional background reading please also reference Hodgetts, Magill-Evans, & Misiaszek (2011); Leew, Stein, & Gibbard (2010); and Stephenson & Carter (2009).

In the AJOT study the authors Collins and Dworkin used an intervention and control group in a blinded and randomly assigned design to measure the impact of wearing a weighted vest on attending behaviors. They used a clever model of removing the weights from the vests in the control group and inserting insignificantly weighted Styrofoam that replicated the appearance of the weighted vests for the data collectors.

The authors were unable to find evidence that weighted vests had any effectiveness for improving attending behaviors. The study was limited because of small sample size and a need for ensuring consistency in coding/recording methods. These limitations are significant enough to warrant the label of 'pilot study.'

The findings of this pilot study are consistent with previous studies and although there are some limitations in the research design there are some other strengths of the study and its confirmation of previous studies is compelling.

My analysis of this is that we should probably make attempts to confirm this with a more tightly controlled design and a larger sample, but based on these results and the consistency of these results with previous studies there is very little support for using weighted vests with the expressed purpose of trying to improve attending behaviors.


References:

Collins, A. & Dworkin, R.J. (2011). Pilot Study of the Effectiveness of Weighted Vests. American Journal of Occupational Therapy, 65(6), 688-694.

Hodgetts, S., Magill-Evans, J., & Misiaszek, J. (2011). Weighted vests, stereotyped behaviors and arousal in children with autism. Journal Of Autism And Developmental Disorders, 41(6), 805-814.

Leew, S., Stein, N., & Gibbard, W. (2010). Weighted vests' effect on social attention for toddlers with Autism Spectrum Disorders. Canadian Journal Of Occupational Therapy. Revue Canadienne D'ergothérapie, 77(2), 113-124.

Stephenson, J., & Carter, M. (2009). The use of weighted vests with children with autism spectrum disorders and other disabilities. Journal Of Autism And Developmental Disorders, 39(1), 105-114.

Dear Evaluating Occupational Therapist,

You evaluated a preschool child who has been receiving private occupational therapy for a year. I referred the family to their local school district because I thought it would be a better option for the family to receive services this way. Your evaluation was thorough and a fair representation of how that child functions - which is always good to see because sometimes evaluating preschoolers is tough and their performance can be variable. I was a little disappointed that you didn't make any attempt to contact me and get any input on the case. I think it is important for evaluating therapists to talk to previous therapists especially when high stakes decisions are being made, like eligibility for services through a system.

The agency that you work for sent a very nice person to the CPSE meeting to represent all of the evaluations that were completed. I asked the representative person what their position and role was at your agency and I learned that this person was a representative. I asked a second time and was told that the person was a representative for CPSE and CSE meetings. I didn't want to ask a third time because it might have been embarrassing - so I am not sure if it was a janitor or the executive director from the agency. They were very nice though.

The Representative read selected portions of all the evaluations at what I would call breakneck speed and it was very difficult to process the information that was provided so rapidly. I read over all of the evaluations prior to the meeting so I would be fully prepared to discuss them and am very familiar with all of the contents. What came across in the rapid review was not fully representative of what you and some of your colleagues documented in the evaluations. It was close, but it was not really accurate. At this point in the meeting I started to worry a little.

The CPSE chairperson was also very kind and friendly. I was happy that they asked me for my input. I explained that I worked with the family for a while and encouraged them to pursue services through the CPSE. I told them my own evaluation findings which were pretty close to yours. I spent some time going over the ways that this child would have difficulty in a pre-academic context, because it really wasn't explained all that well by the Representative.

I think that the CPSE chairperson was pre-disposed to finding the child eligible because no questions were really asked - which was good, because the evaluations that were completed really did support the child's classification. You didn't put any recommendations for services in your evaluation - I know that a lot of therapists don't because they are told not to put recommendations into their assessments. I understand that the idea is that final determination of eligibility and services provided rests with the CPSE - which is fine - but I still stand quite firm in the belief that the recommendations should be made and then the committee should be responsible for accepting, rejecting, or modifying those recommendations as the full committee sees fit.

I find that committees don't like to have dissenting opinions in the room, and I think that is unfortunate because when everyone is agreeing it really undermines the collaborative planning process that is actually supposed to be occurring. It really would have been OK for you to make some recommendation - and then the whole group can decide what the best solution is in context of all the other information on the table. Something bad happens when you don't make any recommendations at all - and I think you really need to know about it.

So the good evaluation that you completed was reported a little inaccurately because you weren't at the meeting. The janitor or executive director representative really didn't understand the full nature of this child's difficulties, but it was mostly ok because I tried to fill in the gaps and thankfully the CPSE chairperson was in essential agreement anyway. Something odd happened though because there were no recommendations about frequency or duration of service from you - so the CPSE chairperson turned to the district speech pathologist who has never before met the child and said

What do you think?? Once a week or maybe twice a week??

Well you can thank this very nice speech pathologist who never met the child before because they thought the child should get OT services at least twice a week. I have absolutely no idea why the CPSE chairperson would ask the district speech pathologist this question but in this situation it worked out ok.

So I know this is a long letter, Evaluating Occupational Therapist, and you are probably really busy and perhaps being so busy made it impossible for you to represent your evaluation at a child's meeting. I just thought you might want to know that THIS TIME all the stars aligned:

1. even though you didn't contact me about the child's therapy history and performance
2. even though the agency representative didn't represent your evaluation very clearly
3. even though you didn't make any recommendations in your report
4. even though some random speech pathologist made the determinative statement on how much OT the child should receive

So EVEN THOUGH all these factors were working against this child today I certainly know better than to open my mouth and stop something that just happens to be working in a child's interest. Call it good fortune. I prefer calling it divine intervention. Either way, it worked for a child today.

It might not work out so well next time - so I thought you might just want to be aware of this story.

One of the biggest concerns that we hear about from parents relates to how their children are functioning socially in their schools. Most schools have 'anti-bullying' or 'bullying prevention' programs in place. Recently, there is a lot more talk about bullying in school environments but that hasn't seemed to stop the behaviors much in the perspective of many families whose children still struggle with the problem.



It is important for parents to know that there are different kinds of bullying - and just because a program is established or policies are in place in a school that doesn't mean that bullying will cease to occur. Broad programmatic anti-bullying efforts like those listed on the OSEP website tend to speak to the whole school population and attempt to create a culture of respect that works on a very broad level. As a result, most kids understand that peer exclusion, relational aggression, and even direct bullying is not acceptable.



However, these programs seem to work best when the differences between children are least notable. In other words, these bullying programs don't work as well to address problems related to helping children tolerate broader differences - so the more overweight, or the more short, or the more learning disabled, or the more speech-impaired a child is then the more difficult it is for kids to act and react appropriately to those differences.



Some of this is a function of normal social development - children struggle with understanding the complexities of social group norms and at the same time develop tolerance for differences from those norms. We have an opportunity to intervene when children react negatively to their peers because of perceived differences that really should NOT be a threat to the establishment of their social order.



I don't mean to imply that peer on peer bullying between relatively 'equal' kids is not a concern because in fact it is - but that we need to develop different interventions for kids when those differences are more magnified. This is difficult for adults to do, probably because most adults are not particularly adroit with tolerating differences themselves. In that sense, the behavior of children is not terribly different than the behavior of many of the adults in the room - but we need to start intervening somewhere.



Sometimes I think that the reasons why some forms of bullying persist is because it is what I call a 'Low-N' problem. That means that it is generally only impacting a very small number of children -those who are falling most far from the 'acceptable' ranges of the social order.



So, the first thing for parents and OTs to do when they want to understand how to address bullying behavior is to understand bullying in its various forms - and then think about what is driving that bullying behavior. I encourage both parents and OT practitioners to study bullying laws in their states and the programs in their local districts and understand how those programs are most directly effective in tamping down negative social behaviors for the broad population. This is a great place to start and will lay a good foundation for being able to intervene with persistent problems at the individual level.



My next blog post will talk more about what steps to take to address bullying problems on the individual level for those students who are still often subject to bullying despite the presence of school-wide prevention efforts.

This is a topic that is probably long overdue - it is something that I have observed in my geographic area for a long period of time. Based on conversations I have with therapists around the country I know that it is not exclusive to my area.

Increasing demands on therapist time, decreasing reimbursements, and dependence on a non-centralized workforce that is not subject to an intense quality improvement process has contributed to significant changes in how occupational therapy 'evaluations' are completed.

Our agency made attempts to impact this system while contracted to complete some evaluations, but 'contractor status' did not place us into a position to make broad system changes. Now it seems that the entire community is stuck into a cycle of low expectations based on long history. Unfortunately, there is no centralized service delivery system or 'top-down' method of assuring quality control - so I think the only way this can change is for the stakeholders to start increasing awareness of the problem and having a conversation.

Both therapists and parents should be interested in this issue. Therapists should be interested because I am calling the quality of our collective 'evaluation' work into question. Parents should be interested because they should know what to expect out of an occupational therapy evaluation for their children.

The American Occupational Therapy Association publishes standards of practice that outline some basics that should be part of all evaluations - but these standards are not very specific. Many evaluations that I see completed as a part of preschool and school-based practice do not even meet these basic standards. Currently, many evaluations that I am seeing can be outlined as follows:

1. Very general statement regarding the child, including name, classroom, and very minimal if any history
2. Long boilerplate descriptions of standardized tests that were used, followed by a very brief report of the child's performance on those tests
3. A 'summary' section with minimal if any analysis and deferred decision making to the CPSE or CSE regarding eligibility for services.

I understand how 'evaluations' have devolved to this state - there are significant time demands and therapists do not have the time to complete lengthy evaluations. Also, there is no demand from CPSE or CSE for higher quality because the bottom line from the committee perspective is 'are children eligible or are they not eligible.' The committees are not in business to promote best practice; they are in business to determine eligibility. If a committee is receiving an evaluation report from a therapist it is generally making a de facto assumption that the evaluation being handed to them is appropriate and complete. Committees occasionally receive feedback about quality because some parents identify that the 'evaluations' are inadequate - and that causes external data (like a private evaluation) to be brought to the table.

External data in the form of a private occupational therapy evaluation causes a lot of consternation to committees, who don't understand 'what is wrong' with the evaluations completed within the system. That causes committee chairs and their committees to be puzzled at what is documented in a private assessment - and contributes to the general sense of 'that's not the way that we do things in schools' or even more commonly 'that is a clinical evaluation and not a school-based evaluation.' The most discouraging part of this problem to me is the engendered culture of low expectation and how practitioners create these myths about what constitutes acceptable practice.

The role of related service providers and their relative power within schools also contributes to the problem; this group of professionals is generally not in a position to take on the systems where they work and they are not always likely be on the front lines of change promotion within their systems.

Anyone who has been involved in this system for any length of time can identify with this issue.

So what can we do to change this?

I don't want to talk about 'best practice' because the term is overused and I also don't think it represents an intermediate step that we can reasonably take to improve. Let's talk about 'better practice.'

'Better practice' means taking a step forward from where we are now. It might not be best, but it is moving in that direction. From our current position, I propose the following for 'better practice' occupational therapy evaluations completed for CPSE and CSE:

1. Background information including reason for referral, identification of medical issues, and lists of allergies and medications. Birth and developmental history need to be present, including history of CPSE or CSE involvement. The inclusion of developmental and medical history does not make an evaluation 'clinical.' This is basic information that is required to form a contextual understanding of the child's performance difficulties.
2. Description of the child's ability to participate in the assessments. This also provides important contextual understanding of the results.
3. A LISTING of the assessments used. If there is a value to 'explain' the tests for the parent audience then provide the parents with a separate sheet of paper with that information. The evaluation should never be 90% boilerplate explanation of what tests were administered.
4. Direct performance observations AND performance on testing. Organize observations and test data into logical performance categories such as 'Physical skills,' 'Sensory skills,' 'Cognitive skills,' 'Regulatory skills,' and 'Social/emotional skills.'
5. Apply this to actual function in their environment, including observations of how these performance attributes impact participation in personal care, learning, and play or socialization. Here it is likely that school based therapists will limit the 'environment of concern' to the school setting, which is appropriate.
6. Summarize the findings, identifying areas of strength and areas of need. Form a summary opinion of what is happening with this child's life and make referrals for other services as needed.
7. MAKE AN ACTUAL RECOMMENDATION! There is nothing wrong with giving your professional opinion. It is up to the committee to accept or reject your recommendations. That DOES NOT MEAN that you defer recommendations to the committee. This is where many committees fail - because it is absolutely fine for professionals to make recommendations and then for a committee as a whole to review those recommendations and decide what is most appropriate. For example, you may identify that a child's needs are so severe that you recommend OT three times a week. However, you may get to the committee meeting and find out that colleagues in PT, speech, and education made similar recommendations for their domains and in total it would be 'too much' for the child to tolerate in their day. The committee may then consider that a different level of service or an altered service delivery method is needed in consideration of ALL the data on the table. That is fine and is actually the STRENGTH of multidisciplinary planning.
8. Follow up with the parents and teacher and talk to them on a regular basis so that you are not providing or documenting this service in a vacuum.

These are just some preliminary ideas. I am interested in feedback - again with the intention of promoting 'better practice.'

If we take some solid first steps, wouldn't it be nice to have a conversation about 'best practice' next?

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

For those who are not aware, IEP Direct is a proprietary Internet-based software package that many school districts use for IEP writing. One value of this kind of tool is that there is more uniformity and subsequent adherence to regulation when IEPs are created in this format. However, a serious negative is that therapists often over-rely on the canned goals that are part of the drop down menus in the software.

I am not sure who writes/approves the canned goals in IEP Direct but some of them are rather silly.

Being a former full time educator myself I know that academic programs spend quite a bit of time teaching students how to write appropriate goals that are both functional and measurable. Something seems to happen between the classroom and practice because the quality of many goals that I see written for children in school settings is very poor.

This is not new but is a perennial rant because the situation does not ever change. Programs like IEP Direct have now compounded the problem because it perpetuates the thinking that "if the computer has it listed as a well-written goal then it must be ok."

The offending goal today is:

Joey will demonstrate a consistent hand preference and appropriate grasp on a crayon to trace basic shapes and letters using correct sequencing with 1/4" accuracy.

The problem with this goal is that it attempts to measure too many things with too little specificity. There are at least six goals in this single goal:

1. Joey will demonstrate a consistent hand preference
2. Joey will use an appropriate grasp on a crayon
3. Joey will trace basic shapes
4. Joey will trace basic letters
5. Joey will trace with correct sequencing
6. Joey will maintain accuracy within 1/4"

Also, what is an appropriate grasp? What shapes? What letters? What does 'correct sequencing' mean?

My favorite point of silliness about this goal is accuracy within 1/4". Here is a picture of the letter 'A' drawn correctly and also drawn within 1/4" accuracy. Obviously, the absurdity scales when the demand for writing within a more confined space increases - but this is a scaled size that a kindergarten student might attempt:

Would you feel as though your child had achieved this goal if they produced a letter that looks like the 'letter' on the left??

I would like to encourage school-based therapists to be a little more thoughtful when writing goals or when clicking the silly drop down menu options when writing IEPs.

I promise all practicing therapists that parents are getting very tired of trying to understand what the goals mean and how they are supposed to know if a child is really making appropriate progress.

I have recently blogged about the State Plan Amendment that involved a $540 million settlement paid from NY State to the federal government because of Medicaid fraud. In the wake of the settlement, the Office of the Medicaid Inspector General has developed guidelines that municipalities are trying to understand, and in turn these guidelines are trying to be followed by local school districts and providers.

The current street level problem is that documentation requirements for services are being applied retroactively - and that causes even greater amounts of ineligible billing. In a mad rush to understand and comply with new requirements (I am hesitant to call them rules or guidelines) the locals are desperately looking for guidance on how they are supposed to provide services, document services, and bill for services.

Inspired people (like me) went to more than one training session and were shocked to find out that there were inconsistencies between the information that was presented at the trainings. The NYS Education department responded to the confusion by publishing two Q&A documents that attempt to clarify the training that every service provider in the state had to attend. The Q&As are the only official documents outside of the handouts provided at the mandated training.

Questions still persist because the requirements are confusing. Unfortunately, OMIG is no longer answering questions and is referring everything over to State Ed. I am not sure who is in charge of answering questions at State Ed but some rather odd information is being fed out of that department. One thorny issue had to do with what supporting documentation was needed for OTA supervision.

The State, as a de facto third party payor, has the right to require whatever they want to require - much as private insurance companies or worker's comp, or Medicare already does. The problem is that the information that is being disseminated is often incorrect and sometimes incomprehensible. Most recently, a municipality undergoing OMIG audit was asked to produce documentation of OTA supervision. The municipality responded by providing copies of co-signed notes, co-signed quarterlies, and other interim notes that were written by the OTR. There is no rule or regulation that dictates the EXACT nature of these notes - just that it is occurring on a regular basis to review treatment and foster professional development of the OTA. In my estimation the municipality provided appropriate documentation - but OMIG pulled out what appears to be some pages from an old NY City Medicaid billing manual that requires even more in depth documentation. The municipality forwarded this to the occupational therapist, who at that point felt under the gun for not providing the correct documentation. The municipality is not a regulator of any profession and is relying on State Ed or OMIG to provide correct information - so now the municipality thought that the OT wasn't doing the right thing!

Since when did an old NYC Medicaid billing manual supersede State Ed Law and previous documentation requirements of the Medicaid program?? The bizarre part of this all is that the presumed pages of the NYC Medicaid billing manual also have a requirement that OTs be registered by AOTA. I am not sure of the last time that AOTA registered anyone, since it is a voluntary membership organization. Back in the early 1990s AOTCB which was loosely connected to AOTA, provided certification for OTs and OTAs - but that function was taken over by the renamed NBCOT which spun off of the professional association and took full independence as a credentialing agency OVER 20 YEARS ago! Someone needs to update the NYC Medicaid billing manual, apparently.

Someone also has to stand up and ask why an old NYC Medicaid billing manual became the governing document for how to document services.

Also, these strange requirements out of an old NYC billing manual are being retroactively applied to providers across the state. People functioning in the corners of NY were not following the requirements of some arcane and outdated NYC billing manual - and the 'non-compliance' is being mathematically applied across the 'universe of claims.' So now old NYC billing requirements are being randomly applied in areas around the state that never before were exposed to these requirements. They aren't BAD requirements in themselves - but they were never before required.

The bottom line is that the municipalities will not be paid for many of the services that were provided because therapists in Niagara Falls did not think ahead and follow the old NYC Medicaid billing manual. That is insane. It is one thing to decline billing based on fraud - but it is quite another matter to apply some previously unknown standard to decline legitimate claims.

The point here is that people in OMIG and State Ed are just making this up as they go along. That places municipalities in the middle, and it places providers at the bottom of the pole trying to figure out what to do. I don't even know where it places the recipients of services - they are just lost in this whole mess.

I am sorry to report this - but it all gets worse. Paying back the money that was fraudulently billed is understandable - but now we are forfeiting money that should be legitimately paid on legitimate services. The Settlement Agreement signed by the Wizards of Albany effectively throw away your 8th amendment rights - so you are not secure against unreasonable fines and penalties. This is highly amusing to me - but how can a State toss out the 8th amendment rights of its populace? 'Excessive' fines and punishment takes on a very different meaning when it is applied to the State as opposed to an individual. Is anything 'excessive' when the State has unlimited revenue (your tax dollars)???

The dismantling of early intervention by making new Medicaid policy around the edges of the problem is a 'hiding in plain sight' issue, but to understand what is happening to early intervention you need to do a deep dive into power, control, and politics.

Counties are required to follow the requirements of OMIG if they want reimbursement, and they feed the requirements down to locals. The locals do not represent a politically connected constituency. Local providers are individual people who are often contractually related to municipalities. They are not represented by Unions, and their interests are only partially represented by their respective trade associations - none of which are particularly strong or powerful in Albany terms. To make matters worse, there are no formal lines of communication and coordination between the trade associations.

You can be absolutely certain that if a giant multi-million dollar settlement for Medicaid fraud came down on the heads of hospitals that HANYS would have found a way to see the 'draft' document and they would have filed an Article 78 proceeding or maybe even a lawsuit to make sure their interests were protected. There is no such political power among preschool or early intervention providers - and that made the constituency very easy pickings for the U.S. Department of Justice and the Wizards of Albany who were willing to have you all to 'take one for the team.' I am using polite terminology.

This was all predicted nearly six years ago. Still, let me assign blame all around because if we understand our role in the problem then maybe we can adjust our priorities and make sure we don't end up with this happening again.

1. I blame myself, because despite my blogging and ranting about it I was largely ineffective in communicating the issue to relevant stakeholders who might have helped to engage the problem.

2. I blame all the people who label this post as 'boring' and write me emails wondering why I don't write more about treatment ideas. This is a population of therapists that is too large and they need to understand that lack of political engagement is jeopardizing care to a very vulnerable population. Also, jobs are now at stake - that may wake some people up. I especially worry about the OTA and PTA population, because based on new burdensome requirements there is significantly less reason to hire or employ these professionals.

3. I blame educational programs that have ultimately failed to educate therapists on the importance of policy on practice.

4. I blame all the trade associations who needed to see this as a very top priority and neglected to give this issue the attention/resources it was due.

5. I blame municipalities for not fighting back. I do not know if a municipality has standing to contest an agreement made by the State with the US DOJ, but on principle alone they should have been less passive.

6. I blame politicians and lawyers who brokered all this and actually understand this whole issue really well. They do not have the courage to address problems directly so instead they take aim at a disenfranchised group of service providers who have no political clout to do anything about it.

All of this will save NY State untold millions of dollars. This is something that is needed - but it will all happen on the back of our educational system for disabled children. There is no question that we needed reform but of all the places to squeeze money out of the system is this really the place to start?

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.

I attended a CSE meeting for a child who has an autism diagnosis. This child previously received EI and CPSE services and was declassified upon entry to kindergarten. The parent called the meeting for CSE consideration because of the severe functional problems the child was having in the classroom. The school wanted to 'give him more time' despite the problems he was having because in their perspective many kindergarten children haven't been exposed to school environments and that is why it is reasonable to expect that there is a wide variation in skill levels of children that age. I suppose that is true, but I guess they forgot to remember that he received EI services and CPSE services and has autism.

The school-based occupational therapist presented a boilerplate evaluation that stated the child was normal in all areas with the exception of atypical scores on a Sensory Profile. In the entire four page evaluation there were three or four narrative statements that were specific to the child's performance. The test scores were also presumably specific to the child. The rest of the report was generic and basically descriptions of the tests that were administered. OT was not recommended for the child.

The parent brought the child to me for a private evaluation. I repeated some of the same tests because I was concerned that perhaps the assessments were inaccurate based on the expressed concerns of the family. I was pleasantly surprised to see that he DID score in a typical range on some of the tests, for example, the VMI. This is a test where children have to copy shapes - and it was obvious that he had prior exposure to copying shapes because he replicated them flawlessly.

However, the test doesn't measure HOW a child copies the shapes. This child copied them with atypical approach, often using right to left and bottom to top pencil strokes. The forms were also accurate, although they were reproduced in a segmented fashion. Also, the child held the pencil with a fisted grasp. There was no mention of this on the school OT evaluation. The OT evaluation included a two paragraph description of the VMI but stated nothing about the child's performance outside of the test score.

I don't usually give the Peabody to five year old children because I find it is not as sensitive as other assessments. However, I knew that he couldn't button and I knew that he had an immature pencil grasp so I gave the test knowing that it would be another point of documentation that actually showed where he was having difficulties. Also, I knew that we would have to re-assess him for annual review in the Spring, and I wanted to hold back the most appropriate assessment for that time because generally you want to avoid using the same test repeatedly within a constricted time frame. In the Spring I would like to give him the Miller Function and Participation Scales, which I believe will accurately capture the nature of his functional performance problems. That test also requires a lot of direction following, and I like to use that test when children ALREADY know me and there is a better chance that communication problems or shyness will not interfere with test participation.

Anyway, he scored below the first percentile on the Peabody Fine Motor Scale, and that dragged down the Fine Motor Composite rating as expected. This data didn't seem to move the school based therapist though, who couldn't change her position that he was able to copy the forms accurately on the VMI.

So we talked about other issues like the atypical fine motor skill, the atypical writing approach, his poor visual attention, his inability to dress independently, inability to manage buttons, his clumsy gross motor skills, his inability to answer 'wh' questions and interact dyadically, his inability to effectively interact with other children in play, and his inattention to social convention (like walking out of the kindergarten bathroom with his pants around his ankles). The OT stated that she would never write a goal to improve pencil grasp if a child scored normally on the VMI, and that the other issues were "not OT." She was willing to provide the classroom with a sensory diet, as if that will solve all these other issues.

Sadly, the oddity of this meeting did not end with the OT. He is diagnosed with autism and the committee struggled with what educational classification to use. At first they wanted to use 'Other Health Impaired' or perhaps just provide a 504 plan. Then they decided that the severity of his speech delay would qualify him for speech 3 times weekly, but they would use the 'Multiple Disabilities' classification and state that he has autism and speech delay. They STRONGLY resisted using the 'Autism' classification despite direct documentation from a doctor that he has autism. That would have qualified him for more intensive language intervention as well as some training for the school so they would be better prepared to understand how to intervene. They gave him a classification that identifies the problems but does not qualify him for the necessary interventions. It was surreal.

Finally, we were all pushed out the door as the allotted time for the meeting expired. On every child's IEP there are statements called 'Present Levels of Educational Performance' or 'PLEP' statements. They summarize a child's strengths and needs and are a critical part of the IEP document because they help people understand the nature of the child's skill levels in the school environment and act as a guide for educational intervention. We left the meeting with these incomplete and inaccurate. "Just read them over when you get the document," we were told. "Let me know if we need to change anything. What's important at least is that we got the classification and services established."

So I guess we accomplished classifying him, but not with the classification that is most appropriate and would support the services he needs. I guess we also achieved speech therapy three times a week and OT once a week - although we didn't write goals, didn't write appropriate PLEP statements, and the OT openly stated in the meeting that she didn't know what she could do for the child.

The parent was happy, because this was the most productive meeting she has attended and prior requests to get him classified and services were denied. Although I am glad that she is happy, I was sad because the system has caused her to set her bar so low on this issue.

The system was willing to wait and see how he does in kindergarten, but it ignores the fact that he has required services his whole life and he has an autism diagnosis. The family is worried NOW and they don't understand why he was declassified and they don't understand why the committee acts as though the most important issue is about what terms he should be classified under - when the MD has already provided some very clear evidence regarding his diagnosis. Families don't understand why this process has to be so painful.

The people in the room seemed mostly kind, and other than the apparent administrative tactical maneuvering to avoid the Autism classification it seemed as though they wanted to help the child. I am a little puzzled over how I could have helped the OT. I understand the position that the child scored functionally on one of the tests, but there was an absolute inability to consider his functional participation OUTSIDE of those tests that he could score functionally on. Even when presented with other evidence like:

1. long history of therapy participation because of difficulty achieving skills
   
2. Notable motor delays
3. Notable sensory processing differences
4. Notable social and play impairment

Instead, the school OT lectured me on repeating the VMI and that my entire report was invalidated because I repeated a test that was recently administered in the school. Ironically the child scored identically both administrations of the VMI and copying circles, squares, and triangles is hardly an esoteric task for a kindergarten student. The whole concept of practice effect on a test that was not even in question was so irrelevant to the other evaluation findings I didn't even know where to start. I wanted to help them understand that this was a red herring argument but there was just nowhere to go in talking to this committee.

I understand that it must be intimidating to have another therapist come in to a meeting with a second opinion. It is not comfortable to discuss conflicting findings, and certainly no one wants to be wrong, or incorrect. However, as therapists we can't let our own feelings or egos get in the way of improving our own skills and providing the best possible services for a child. A impersonal boiler plate evaluation is not acceptable or appropriate. Failing to consider a child's individual history and needs is not acceptable or appropriate. Parents should demand and rightfully expect more professionalism than template evaluations where the only thing changed in the document is the test scores. If the systems you are working in place pressures on you to cut corners - don't give in. Fight back and improve the system.

Then I remembered my own advice.

We still have a lot of work to do, because although I wrote that advice nearly two years ago I don't know that I have seen enough progress on what we need to do to improve these systems.

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

I was doing an evaluation recently - and I should know better than be shocked at the things that come from the mouths of children...

It is important for therapists to be observant: it is a skill that I drill into my staff and my students on a regular basis. There is always a lot to observe with preschoolers beyond the typical issues of how many blocks they are stacking or how they are holding their pencil.

As is usual my mind was operating on two different levels during a recent evaluation. While we were stacking blocks I noticed the double whorl pattern in the hair of the five year old I was seeing and I was drifting away into some articles I read about the controversy over whether or not this was a phenotypical expression of altered neurological development and hemispheric lateralization or if it was just an incidental finding. I think that I need to read more because of the recent challenges to this concept that I am now aware of.

Anyway, then I looked at the hands of the youngster, and he had a rather notable injury to one fingernail. I was wondering if the fingernail injury would be causing him to use that hand less than typical - and then I was considering that if he was using that hand less than usual that I could make an error in the assessment regarding reporting what hand he used to do tasks - and that in total my findings could be in jeopardy because also I had to make sure I wasn't tainting this whole picture with inconclusive opinions based on the double whorl pattern in his hair. At the crescendo of my cognitive crisis in how to interpret all this data that part of my mind that operates 'in the moment' asked in a very caring way "Oh my, what happened to your finger??"

I thought he said that he injured it in a bar, and I wasn't sure I heard him correctly because my brain was so muddled with thoughts of lateralization, Geschwind and Galaburda, etc. that I just had to ask the follow up -

"What do you mean, 'It happened in a bar??!??"

Without missing a beat the preschooler says, "I hurt my finger in a bar. You know what a bar is. The place where you drink beer?"

Now I am certain that there is a simple and innocent truth behind all this, but sometimes the way things come out of kid's mouths just stops me dead in my tracks.