Wednesday, April 20, 2011

Perspectives on aging and not aging.

"I love you," Kimmie's grandfather said, while gently releasing her hand and carefully pulling up the bedsheets around her thin shoulders.

"Well I love your eyes," she said back, and planted a kiss squarely on his jaw.

The grandfather gave her a wink, got up, and tipped his hat to me as he left the room. I felt a little awkward and concerned that I stepped into a personal moment, but Kimmie didn't say anything about it so we just quickly got to the business of therapy.

Kimmie was a nineteen year old young adult who had cystic fibrosis and spent many long weeks in the hospital. I got to know her pretty well because she was admitted to the hospital several times each year. She landed on my caseload after her first hospitalization and the way we divided workload kept 'repeat' patients like her with the same therapist each time.

She talked a lot about tranferring to an adult hospital but she knew her pulmonologist so well (and vice versa)that her family decided to stay as long as possible in the children's hospital where she felt more comfortable.

I didn't know a lot about CF when I started working with her; she taught me most everything that I know about the condition. My job assignment from the pulmonologist was relatively simple and straightforward: she had diminished lung capacity and frequent infections that limited her physical activity - so my job was to keep her as physically engaged as possible within the limits of her physical capacity to maintain oxygen saturation levels.

Sometimes that meant trying to get through self feeding in the ICU. Sometimes it meant playing air hockey in the playroom while standing and using wrist weights during the activity. She normally beat me in air hockey but one day I had an uncharacteristic winning streak. I assumed she was just having a bad day because the pulse oximeter was ticking down into the low 80s, threatening to alarm, so we decided to take a break and let her recover a little bit.

"I'm getting killed!" she said as she reached toward her chair. I had to steady her on the way down because she was a little winded. Kimmie's body was very frail and her trunk was stiff and rounded like a barrel. Her shoulders were in her typical position of being hunched up close to her ears and rounded forward. "Come on now Kimmie, let's not throw posture out the window," I answered back in a non-reply as I lowered her into the chair.

Then I continued, "Well usually you are the one who is killing me in this game, so it is about time I have a chance to beat you!"

I watched her O2 levels stabilize at 82 and I was glad that I wasn't going to have to get the nurse. "I don't think you understand Chris," she said. I looked over and saw that tears were in her eyes. Kimmie had soft round eyes with large lashes, and her cheeks were dimpled and puffy and always seemed a little rosy no matter how far down her O2 levels sank. "I'm getting killed. I'm dying and I can't stop it."

Kimmie's air hockey defeat apparently underscored her inability to stand and underscored her inability to maintain her focus because she had to concentrate every bit of effort on finding a way to get sustaining oxygen into some functional part of her lungs. She used to tell me that she wished she could control her breathing so she wouldn't waste time and energy sending air down to places where it wouldn't make a difference. She was pragmatic that way, but now suddenly everything in front of her became a blurred confusion of loss, and gigantic tears welled in her eyes, dangled briefly on her eyelashes, and then splashed down heavily onto her cheeks.

"I hate crying," she said as I frantically grabbed for some tissues and handed them to her. Her tears welled and lingered and overflowed and then bounced off of her cheeks in a repetitive pattern that she could not blink away. "I hate crying because I can't see and its bad enough not being able to breathe but I hate when I can't see and can't breathe at the same time."

This was probably something that she spent some time thinking about before, I figured, based on the specificity of her concerns. Perhaps the crying loosened up something in her lungs because her O2 levels ticked closer to 85.

"I'm afraid Chris, that someday in the ICU I won't be able to breathe. Maybe I will know I am dying. Maybe I'll see my Mom and I'll cry. What if I cry and can't see when I can't breathe? What am I going to do?"

When you work around people who are critically ill or even around those who are dying or close to death you can develop some very sophisticated defenses that may not be particularly logical, especially in consideration of all the scientific facts and knowledge that go into your training. I never really considered that Kimmie was going to die, because the ICU doctors could save any person's life. Besides, she could play air hockey so anyone who can play air hockey and teach me about CF wasn't close to dying any time soon. Besides, it wasn't my job to think about that anyway. It was my job to help her find ways to do things and to stay as healthy as possible.

Kimmie got worse. Then she got better and went home. Then she got worse again and was on a transplant list. Then she got better and went home. This reinforced the fact to me that Kimmie was not going to die.

Nineteen turned to twenty and even her pulmonologist was pushing her toward an adult facility. We still played air hockey. Her shoulders got more rounded and her chest and ribs became even more stiff and immobile. Air hockey was something that she could still do. It was a point of activity in a senseless disaster of steroids, IV antibiotics,respiratory therapy, and recovery from impossible metabolic imbalances when she got bad enough to require temporary intubation.

Crying after air hockey started to become something of a ritual. "I hate it, but do you mind, Chris, that I cry after we are done?" she asked me one day. I didn't know what to say - so I offered to stop our air hockey activities if they were just making her cry. "I don't want to stop beating you in air hockey! I just want you to be sure that I can see if I start to cry." I couldn't decline the request, so instead of handing her the tissues it became my job to wipe the tears from her eyes and face if I won.

People develop different points of meaning around all different kinds of things. Kimmie had a thing about eyes and crying and being able to see. She talked about wanting to be able to see constantly. She hated when she couldn't see things because of crying or oxygen masks. I accepted it, and wondered about it because it came up all the time with her.

As I dabbed her tears one day I had to ask, "Kimmie, why did you tell your grandfather that you loved his eyes? I always wondered why you said it to him that way."

"I want to be old," she told me. "But it won't ever happen. I want my eyes to crinkle around the corners when I smile. I want to experience enough to have those happy lines on my face. Then if I cry the tears won't get stuck on my eyelashes and they won't fall on my face. They will go where tears go when you have lived long enough to have riverbeds for them to flow into."


Kimmie died that year. She was 20. The doctors couldn't save her, because no one can save you from CF. She didn't live long enough to have happy lines. I hope she didn't cry as she was dying, because I know she wanted to see. I don't know because I wasn't there when she died. No one was. She died at home in her room at night, alone.

That was almost 20 years ago. It took me a really long time to write Kimmie's story down. I'm thinking about her now because I am 45 and at the end of a long day I take water into my hands and splash it onto my face, watching drops beginning to find small patterns that follow away from my eyes. It is a gift that she wanted desperately and could not have. It is a gift that I am only now beginning to be blessed with.

Thursday, April 14, 2011

Fact check: Will new EI rules really create jobs as claimed?

Proposed rule changes for EI rates were published yesterday.

The main issue for practitioners to be aware of is that you will no longer bill for a 'basic visit' which in most cases consists of a 30 minute visit. Instead you will bill in 15 minute increments - but what is important to understand is that the rate you were previously paid will now apply to a base visit length of 45 minutes. That means that if you are continuing with your standard 30 minute visits that you will experience an additional 33% rate cut.

Whenever rule changes are proposed there needs to be impact statements - and NYS rulemakers have decided that cutting EI rates an additional 33% will result in increased job opportunities:

The proposed rule change for home and community services to full 15 minute billing increments may result in a minimal increase of employment opportunities as providers will have to align time spent delivering services with the time assumptions used to establish the rates. It may also provide an employment opportunity for providers of children who receive intensive services to provide a higher level of services through longer visits without incurring the cost of travel to a participant's home. Previously these intensive services may not have been cost effective or feasible to provide under the existing payment structure.

In other words they are stating that since providers will have to work 33% longer to make the same amount of money that this will cause agencies to hire more people to meet the same EI demand. Obviously the rulemakers have never directed an agency or owned a practice. I don't know how they can be so dishonest when they are writing these rules - it isn't even a matter of perspective - the impact statements are just dishonest.

What is more likely to happen is that agencies will not be able to hire therapists because no one will work for such a low rate and because there is no way for agencies to cover costs at current salary levels and at this low reimbursement. Current EI therapists and even entire agencies will bail out of the system and try to find work in other sectors - and indeed that will create job opportunities! No one will want to work in EI, so there sure will be a lot of EI jobs available.

On a serious note, this means that many children will not receive EI services - and that those families who have resources will access private resources/insurance to help themselves. Those families who do not have resources will be out of luck.

The bottom line here is that cost-sharing is realized because people who have resources will activate those resources and that saves the EI system and NY State money. However, the distribution of this cost-sharing is only an option for people who already have the resources - and if these rule writers knew anything about the demographics of the EI program they would understand that they just kicked a very needy population that doesn't have a lot of resources even further into the gutter.

Wednesday, April 13, 2011

Sensory integration research: Who is it for?

The March/April issue of AJOT has two articles on sensory integration that are worth discussing.

The first is Verification and clarification of patterns of sensory integrative dysfunction (Mailloux, Mulligan, Smith Roley, This article is another factor analysis study that has to be considered in the context of a number of other studies including Ayres (1989) original cluster and factor analyses that went into SIPT standardization, Mulligan's 1998 and 2000 cluster and factor analyses, and the critically appraised topic written by Davies and Tucker (2008).

I'm not sure how many street level practitioners read cluster and factor analysis studies but I don't think that most people put this on top of their reading list. I think this is because we don't spend a lot of time educating practitioners on these methods and what they mean. I personally think that these statistical models are interesting but I also understand that they have a serious fundamental flaw in that they are based on heuristic models of interpretation. In other words, in the case of the SIPT, we are trying to label conditions based on a defined set of variables that supposedly 'make up' a construct that is called 'sensory integration' or perhaps 'praxis.'

The truth is that we are using those 17 tests as a point of convenience even though we have a lot of data that tells us that there are individual problems with some of the reliability of some of those tests. On top of that problem we also have expanded our thinking into more dynamic systems models and to be honest I have no idea how you apply factor analysis inside a world of non-linear dynamics. I guess I know enough to know that I don't have the math background for this kind of thinking.

Maybe it isn't a math problem as much as it is a philosophical problem - and that brings us around to the heuristics problem. I just can't help thinking that we are making contrived conclusions that might not really be a reflection of a full data set. If you go through and read all the factor and cluster analyses and the interpretations of these studies that have been done you will see that factors and clusters have been identified, then clarified and redefined, and in this most recent study we have come full circle to claiming consistency with the orginal conclusion of Ayres.

If there are any street level people reading this stuff they are probably wondering:

1. So which is most 'true' - the Ayres data set or the Mulligan data set or the interpretation of Davies/Tucker or now the Mailloux/Mulligan/ data set.
2. In the 20+ years of variability on conclusions has any of this made a difference anyway to how clinicians are practicing?
3. Is this even in sync with the notion of occupation based practice?

I am concerned that decisions will be made for restandardizing the SIPT based on the heuristic interpretation of these data sets. Since we haven't done a historically good job of even definining what SI is that this is kind of like building a castle on a sand foundation.

All of this leads to the overwhelming question of WHO CARES and WHO IS THIS REALLY WRITTEN FOR ANYWAY? This research has no application to practice. My concern is that in the next 20 years someone else will decide to be an eigenvalue purist who thinks THERE MUST BE a 6 factor solution and they will contribute to another 20 years of gear spinning. Will this bring our practice further along?

On to the next article...

Parham, Smith Roley, May-Benson, wrote Development of a fidelity measure for research on the effectiveness of the Ayres Sensory Integration Intervention (ASI). This is a long anticipated article that developed a fidelity measure for use in research on ASI. I understand that this is not a practice tool, but the point is to more clearly operationalize our terms and definitions for research - which in theory is supposed to eventually inform our practice.

Structural and process elements were identified but only process elements were validated. Unfortunately, the only people who can tell you if you are appropriately incorporating the process elements are a handful of specially trained experts who defined what the process elements are. This kind of drives the whole fidelity instrument into a ditch of confirmation bias - and really I just don't know what to say about it from that point.

Structural elements are identified but were not validated. Presumably these would be elements that could be more easily confirmed by untrained people. The problem with the structural elements is that you need to have post professional training in SI, there are restrictive space and equipment requirements, and there are requirements for levels of communication that are rarely achieved in many practice settings.

These elements make ASI as it is described as being apropos of nothing, because if only a couple experts can tell you if you are doing it, and if your practice setting precludes the structural elements - then a fidelity measure won't matter much because the model is not applicable to the realities of street level practice. In my thinking, these two articles do not contribute to practice and demonstrate quite clearly that we should re-work the model until we come up with something that reflects actual practice and perhaps incorporates a broader occupation-based framework. While we are at it we might drop those sensory processing interventions that have not been supported by research.


Ayres, A. J. (1989). Sensory Integration and Praxis Tests. Los Angeles: Western Psychological Services.

Davies P. L., Tucker R.(2010) Evidence review to investigate the support for subtypes of children with difficulty processing and integrating sensory information. American Journal of Occupational Therapy 64, 391–402.

Mailloux, Z., Mulligan, S.,; Smith Roley, S., (2011) Verification and clarification of patterns of sensory integrative dysfunction. American Journal of Occupational Therapy, 65, 143-151.

Mulligan S. (1998). Patterns of sensory integration dysfunction: A confirmatory factor analysis. American Journal of Occupational Therapy, 52, 819–28.

Mulligan, S. (2000). Cluster analysis of scores of children on the Sensory Integration and Praxis Tests. Occupational Therapy Journal of Research, 20(4), 258–270.

Parham, L.D., Smith Roley, S., May-Benson, T.A., (2011) Development of a fidelity measure for research on the effectiveness of the Ayres Sensory Integration Intervention, American Journal of Occupational Therapy, 65, 133-142.