Autism Review

I recall being a newbie occupational therapist and having a keen sense of "having to put my time in." It is probably a broad cultural value passed to me first from my family. My Dad was a hard working person who I saw go to work every day and sometimes even every night when he was assigned an evening shift.

When I graduated from college I gravitated toward home care and consultative occupational therapy; the freedom and responsibility of these settings matched my interests and work style. Since I was a newbie and trying to work for home care agencies all of the preferred geographic areas were taken by more seasoned occupational therapists. That left me with assignments in far-flung areas where I had to drive up to an hour to get the the patient's home. I figured that I would accept these cases and then after some time I would be offered cases that were not as far away.

So, during this time in my career when I was driving from Buffalo to Farnham and North Collins, dreaming of closer assignments, I met Peter Talty.

Peter was one of those 'more seasoned' OTs who I imagined I was competing against for favorable home care referrals. He called on the recommendation of Kent Tigges who was a mutual friend and said to me, "So I hear you are interested in some work and Kent tells me that I should call you!"

I already knew who Peter was although I never met him - and I was nervous and excited that he would call and offer me a job! Now being a newbie and most certainly not being in a position to turn away work and being flattered to have Peter Talty call me and definitely wanting to show my best for my mentor Kent I listened to myself reply, "Sure... definitely!" even before asking for any other details.

I'll never forget meeting Peter in person for the first time and I will never forget the first question I asked: "So... where did I agree to work and what kind of work will I be doing???"

Peter didn't hesitate a second in his response - he delivered the news to me in the straightest of terms. He deadpanned, "You know when you are driving along a major road like the Thruway and there is an exit for a town you never heard of? Then you look over and all you see is trees and maybe a gas station sign? You might wonder what is over there if you took that Thruway exit. That is where we are going to go!!!"

I noticed that he said "we" and that surprised me a little - after all, most "seasoned" occupational therapists only worked in places that were geographically close to their homes. I quickly learned that although Peter was very experienced he was definitely not like "most" therapists.

Although Peter lived near the Buffalo area he went with me to set up and deliver occupational therapy services in very distant places all over Western NY. We went to nursing homes in Salamanca and Machias. We went to community rehabilitation programs in Olean. We went to a residential program for children who had developmental disabilities in Bradford, PA. I will also never forget how Peter gave me directions to find these places: "Keep driving down this road and you will see a place called 'The Cow Palace' on your right. Keep on going and take the right fork in the road after that - but it won't have a street sign." Peter's directions were legendary.

While thousands and thousands of miles ticked off my odometer I never minded it at all. Peter was an amazing role model and I quickly dropped my preconceived notions of how far experienced OTs should have to travel for work. Peter Talty went the extra mile.

He didn't just go the extra mile in physical distance - he did the same for me, for the COTAs we supervised, and for all those patients including every child who had an IEP along the old Route 17 between Randolph and Belmont. In places where there was no occupational therapy, in places where occupational therapy needed to be, Peter Talty made occupational therapy happen.

I also recall Peter's phone call to me asking if I was interested in teaching some lab sections at a college. By that time I knew enough to ask "where is this college where we will be going??" Of course he was referring to Keuka College - a two hour drive for us both - but it was another tremendous opportunity to watch Peter 'go the extra mile' in so many ways for hundreds of occupational therapy students over the years.

A year or so ago Peter called me and wanted to spend some time in my private practice. Watching him work again was another amazing reminder of what he brought to patients, how he listened to their stories, and most importantly how he helped them move forward with their own recovery.

Peter Talty is retiring from Keuka College this year and I can think of no better way of honoring him than telling this story of how much good you can create when you are willing to 'go the extra mile' as an occupational therapist.

Whenever I drive along a road and wonder what is over the treeline I think of how important it is to care. I also remember that Peter showed me that you also have to care enough to actually put yourself into action. Sometimes the people who need us the most will be in places where we haven't been before and where we never imagined ourselves being. His example is one I will always aspire to.

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.'

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...'

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.

Earlier this week I noticed a large uptick in Google searches regarding early intervention that were landing on this blog so I started wondering what was going on. Turns out that there was a NYS Association of Counties meeting this week and the Department of Health gave a powerpoint presentation about the Governor's proposal. Copies of the powerpoint started to make their way around the State - and that got people doing some Internet searches for more information. Here is a link to the presentation for those who have not been able to see it yet.

The powerpoint doesn't offer information that is materially different than what is already listed in the proposed budget but it is in a more readable format.

The largest issues proposed include:
1. Providers will be approved through the Department of Health and won't have contracts with local municipalities.
2. There must be an arms length relationship between service coordinators, evaluators, and service providers.
3. Providers will be required to establish and maintain contracts or agreements with a sufficient number of insurers, including Medicaid and CHP.
4. Providers will have to use the State's Fiscal Agent to bill third party payors.
5. All of this will be achieved by a mandate on insurance companies requiring them to coordinate through the State Fiscal Agent to pay for EI services.

Details that are still a little unclear include how the rate will be negotiated. Currently, there is no alignment between EI rates paid by municipalities, rates paid by insurance companies, and the Medicaid rates. It is unclear whether or not the rates will change based on the information released so far. The current plan calls for providers to continue providing services whether or not they have been reimbursed - so there will need to be some clarity so providers understand the rule systems they are being asked to operate under for reimbursement.

It is likely that this will drive some providers out of the system and that will likely create delays in service provision. That means that private therapies, at least for families that have those resources, will likely replace the EI system as the de facto methodology for children receiving services. It is another form of indirect cost sharing, and is probably intentional.

Stay tuned for ongoing analysis.