Monday, January 30, 2006

Working on Benny's hip

The doctors in the pediatric rheumatology department asked me to come spend some time in the clinic on Wednesday mornings; they liked the idea of having an occupational therapist there to see patients with them and to provide some direct assessment and intervention. I did a lot of measurement to monitor the mobility of little hips and knees and elbows and wrists and fingers. The one thing that I noticed about most of the children is that they were used to pain and they often didn’t say when something was hurting them. They were so accustomed to the sensation of pain that you often wouldn’t know they were hurting until you would see a glistening in the eye, or even worse, a stray tear escaping and rolling down a little cheek. When I would ask a child why they didn’t tell me that they were hurting, I would often hear “But it always hurts.” This is why working with children who have arthritis is often like taking a crash course in sensitivity training.

Although the children all had individual needs, there were certain services that the families came to expect from the clinic. The doctors would monitor medication and make broad suggestions and plans for intervention. I would often make the children splints to help guide their joints back into the proper position, or provide their parents with education on what kinds of activities were best to encourage or discourage in consideration of the child’s pain and need for movement. Most of the families would come in again and again so it was easy to see that patterns of interactions emerged. They understood my role, the role of the rheumatologist, and their own roles as well. Like most medical experiences, there is a degree of predictability and routine that everyone follows and expects.

Benny was different from many of the other patients in the clinic. He was an eighteen year old black teenager who was a senior at a high school in the tough neighborhoods on the west side of the city. He always came to the clinic alone; his mother would call and inform us that he would be coming but she never attended with him. He had JRA like all of the other children who were seen in the clinic but he also was diagnosed with paranoid schizophrenia. He was heavily medicated with psychotropics that suppressed the voices in his head as well as the spontaneity and joy of his adolescence.

Benny’s mild arthritis was restricted to one leg so the doctors were a little surprised when I asked them for a referral. “He needs a lot of work on his hip,” I told them. They trusted my judgment so they accepted my explanation and provided the referral that authorized evaluation and treatment.

We met for our initial interview and Benny wouldn’t look at me. When I asked him to remove his hat I noticed that his hair was a little too long and that it was lined with furrows that were caused by the seams of his baseball cap. He wore dark blue polyester pants that were a little too short, a red pocket tee, and a plaid flannel shirt that hung unbuttoned around his sides. “What are your goals, Benny?” I asked him. “I mean, what would you want to do if you knew that you couldn’t fail?”

Benny’s voice was flat and dull, but the interest in his expression was unmistakable. During an interview, sometimes you get lucky, and you ask a question in just the right way. He managed to glimpse at me fleetingly and he replied, “I would be like the other kids in my school.”

Benny was about as far away from being like the other kids in school as a person could be. What was worse, the other kids knew it, so he stood out like, well, a kid with JRA and paranoid schizophrenia. Benny was unkempt, gangly, and awkward. He had virtually no functional communication or interpersonal skills, and above all, he was not hip.

I am not sure what I had to offer Benny. I was just an un-hip white man. I was just about as far from the world he aspired to as he was. I still had a sense of what hip was, and what it was not, so I thought that there was at least some room to try.

I knew immediately that what Benny needed was more than what could be offered within the context of a once or twice weekly clinic appointment. He needed to learn how to communicate with others, how to present himself socially, and he needed a basis from which he could interact with his peers. Benny needed an intensity of intervention that was beyond typical, so I offered him a volunteer position in my office where I could supervise him directly.

No matter how hard we tried it seemed like Benny would never be able to maintain eye contact in a conversation. At the time the internet was not in common use by the public but I tried to eliminate the interpersonal stress by setting him up on my Compuserve account. In this format he could email as a pen-pal with people that I knew. The anonymity of the computer freed him to discuss issues without the fears of face to face communication. On the computer no one knew that he had JRA, or that he heard voices. On the computer, he was just Benny.

There were still days when the voices would be particularly strong, and it was easy to see that Benny struggled. He would lose his focus, be even slower to respond, and his grooming was worse. I took up a collection in the department to buy Benny a Walkman. Listening to rap at moderate volumes drowned out the voices, and although it was just a short term crutch, that Walkman got him through some tough days until he could get a doctor appointment to check out his medication and make adjustments as needed.

Benny got daily feedback on his dress and appearance so over time we noticed that he wasn’t wearing so many layers of clothing. Soon he was just wearing slacks and collared shirts, but the shirts were always buttoned all the way to his neck. Then he learned to wear his shirts with the top button unbuttoned. It was such a small accomplishment, but it represented a giant step for Benny. Then one day he told us that he wanted to wear clothes like the other kids in school, so we went to the mall and generated a shopping list for his mother. I am not sure that I ever saw Benny as proud as the day that he came in wearing a Fubu sweatshirt.

One day I got a phone call from Benny telling me that he and his mom were moving to Florida. He was rather matter-of-fact, and there was not much emotion in his voice. Just like that, he was gone. I never heard from him again.

I sometimes think about Benny and wonder where he is and how he is doing. More than anything else, I think I will always remember the last visit that he had in the rheumatology clinic when everyone agreed that Benny’s hip had improved considerably.

Tuesday, January 24, 2006

more than a little rain

Samantha played quietly in the corner as I entered the room. Her mother sat nearby, observing from a distance. Prior to the evaluation I was told by other staff that the parent was unhappy with having to comply with the evaluations. Reportedly she felt the same way when her older child was identified as needing special education services. Samantha was going to be different, by her reckoning, and no evaluation team was going to tell this mother otherwise. Samantha continued occupying herself, carrying her parent’s burden of hope as I began to introduce myself.

“I really don’t know why we are here, and neither does anyone else,” the mother stated coldly in response to my greeting. She was thin and her face had a severe look, punctuated by her frowning eyebrows. “Samantha isn’t having any problems. Sometimes she can be stubborn and won’t do things that she is told to do, but I have no other concerns.”

“Do you like to be called Samantha?” I asked the child.

“She won’t respond to anything else, but she probably won’t answer you now,” the mother telecasted toward her daughter. She is stubborn so don’t be surprised if she won’t even talk.” The mother’s voice had a tone of disgust, hardly something you would expect from a mother. Any mother.

On cue, Samantha’s lips sealed together. The mother continued, “She knows her name though. Her father sometimes calls her ‘Little Susan’ which is my name. Samantha always gets mad when he says that and she yells at him even more.” The mom spoke nonchalantly, not realizing that her husband was not paying any compliments.

Samantha refused to accompany me and she wouldn’t talk or make eye contact. I watched as her mother verbally sparred at her, “Don’t be like this now. I told you not to be like this. You always have to be like this, don’t you?” The words rained down on Samantha, and she seemed to get visibly smaller with each word. Then the mother turned to me and asked if any of the preschool staff could come and intervene. I wondered to myself – if she was not able to get her own daughter to comply with a request then what could a group of strangers possibly accomplish? Samantha sat by mutely. I sat and listened, thinking that Samantha’s hair was very cute and poker straight. I felt badly about her mother’s words. I wondered if Samantha expected some salvation, and I momentarily wondered how I could deliver it.

Samantha didn’t speak throughout the entire evaluation, which is very unusual for a four year old. She wouldn’t participate in many of the assessment tasks so it was difficult to assess her actual skill. Toward the end of the evaluation I noticed her squirming in her seat so I asked her if she needed to use the bathroom. She didn’t answer; she just stared straight ahead.

As I finished writing my final notes on the paper I noticed a small stream of urine running alongside Samantha’s leg as she sat in the chair. The urine fell in drops and then collected on the floor.

I wasn’t sure what to say, or do. Then I thought of the way Samantha’s mother spoke to her, and the way her words must have stung as they fell from the mother’s mouth and toward Samantha’s ears, forming puddles around her feet.

Samantha sat expressionless, unmoved. I didn’t tell her that it would be alright, because it probably won’t be. As I quietly put on my gloves and kneeled down at Samantha’s feet, I wished that fixing this problem could be as easy as cleaning the floor.

Monday, January 23, 2006

The abject failure of school-based occupational therapy

I think that we can often learn best from our largest mistakes and shortcomings. This kind of topic will not win me friends among those people who aren't interested in delving into the issues in a real way - but sometimes an issue just screams to be expressed.

This vignette does not represent ALL school based practice, but it represents enough that merits some serious discussion.

I received a phone call from a CSE chairperson today who wanted me to present my independent evaluation at a meeting. He was confused that I was recommending occupational therapy services to a pre-adolescent 12 year old child. The child has a non verbal learning disability and is failing in school. He received occupational therapy until he was in 4th grade, after which time he was discharged.

"I don't understand how a child this old can benefit from occupational therapy," said the chairperson. "We don't provide occupational therapy services to children this old."

I was intrigued by the concept that a twelve year old was somehow not likely to improve their capabilities. My evaluation demonstrated that the child could not functionally write and that he was having a significant difficulty in participating in his curriculum because of this writing disability. He was failing most of his classes due to poor writing skills and limited organizational skills.

I decided to ask the chairperson a few questions, just to poke at his value system a little. "So what was the entire point of occupational therapy services when this child was between the ages of 5 and 10?" The chairperson replied, "He needed to improve his writing skills."

Now that is just fine, except that my evaluation indicated that he has no functional writing skills at all and that the very little that he is able to produce is on a computer - but that he even lacks age appropriate typing capabilities. My independent evaluation recommended occupational therapy services to teach the child organizational strategies and to work on his skills with accessing computer technology for typing his assignments.

I stated to the chairperson, "The whole purpose of occupational therapy for over five years was to help him develop writing skills. Now here he is in 7th grade and he still has no writing skills. Don't you think there is some problem that needs to be investigated, or should we instead ignore the obvious fact that he simply can't write or get himself organized?"

The child's fourth grade IEP had occupational therapy goals on it related to improving unilateral standing balance, improving ability to find words in a word search puzzle, and improving ability to copy forms on the Developmental Test of Visual Motor Integration. At the end of the year the COTA who was treating him indicated that his balance and visual motor skill had improved because of small raw score improvements over the course of the year. The discharge summary indicated that Brain Gym activities were used in therapy once a week and he had improved and that he would no longer benefit from occupational therapy. There was no OTR commentary or co-signature on the documentation.

The CSE chairperson replied to me, "Well how exactly can occupational therapy benefit him at this point in time?"

"I would suggest that occupational therapy WON'T benefit him if they spend their time doing word search puzzles once weekly or participating in some foolish Brain Gym activities. However, if he is trained in functional task-oriented organizational strategies and these are communicated to the team and progress in monitored on a regular basis - he may have a greater chance of achieving some benefit. Also, if he is taught how to type and how to access a word processer then he may have a better chance of handing in writing assignments."

Should I blame the CSE chairperson who has been educated to believe that OT ends in fourth grade? Should I instead blame the occupational therapist for thinking that unproven pseudoscientific intervention strategies constitute 'best practice?' Should I blame the occupational therapist for failing to document progress with the appropriate use of standardized tests? Should I wonder why a CSE has come to believe that occupational therapy can't be provided to teach a set of very concrete and functional skills in middle school, but it is ok to provide it for 5 straight years and have no one question the efficacy of the program in elementary school?

If the occupational therapy profession wants to convince anyone that it has a vital and unique role to play in the education of children, it will need to do a lot better than what it is doing now.

Friday, January 20, 2006

SUVs - safe or not?


Pediatric occupational therapists often have good opportunities to talk to parents about injury prevention. Parents are often looking for advice on proper child restraints and other child passenger safety issues. Parent education regarding safety and wellness issues should be critical components of all occupational therapy interventions.

It is very difficult to cut through the hype when it comes to reporting on SUV safety - and the reporting on the newest study in Pediatrics this month is no exception. Read the full article at http://pediatrics.aappublications.org/cgi/content/abstract/117/1/9

On average, SUVs in the study weighed 1,300 pounds more than the cars studied. The extra weight of SUVs enhanced safety, reducing the risk of injury by more than a third. That safety is offset by findings that SUVs were more than twice as likely as cars to roll over in crashes.

So what should parents do? Study the rollover risks of SUVs. Go to the website http://www.safercar.gov/ and study the issue of rollover yourself. Then when you choose a vehicle, consider the ratings, consider whether the vehicle was dynamically tested, and consider the additional safety options like Electronic Stability Control and curtain airbags. Learn about the dangers of overcorrection when driving an SUV and check your tires frequently. Even more, understand the risks of driving SUVs in rural areas.

Cars and vans can rollover also. The rate is about half that of SUVs.. again, it is important to educate yourself about this. Don't think that driving the family minivan is better than an SUV - sometimes, the minivans are actually worse.

SUVs offer superior safety in frontal crashes. The issue is this: can you avoid a rollover? That's tough to know - instincts can kick in and all the knowledge of maneuverability can go out the window if you are trying to avoid hitting a child who has run into the road.

No matter what you do, keep your children restrained properly in SUVs. And keep them away from deploying air bags in the front seat if they are less than 13 years old.

Reference:
Daly, L., Kallan, M.J., Arbogast, K.B., & Durbin, D.R. (2006). Risk of injury to child passengers in sport utility vehicles. Pediatrics, 117, 9-14.

Tuesday, January 17, 2006

break

Wow. It has been a mad dash the last couple weeks - wrapping up my last semester of classes for the doctoral program which necessitated a day-trip to Florida, and then a weekend trip to California, and inbetween one computer caught fire and the other decided to roll over and die - and then there are the contract nightmares. Life is not boring, to be certain.

Anyway, I appreciate the kind comments recently and I just wanted to remind folks that I am happy to contact people to discuss issues more but if you leave anonymous notes I have no way of contacting you! Please email me directly if you don't want to share your email with the world!

I seem to have a two week break now before the next round of travel. I'll be posting more soon..

Monday, January 09, 2006

Dimm wit

If you are not interested in technobabble about computers, please move on. Or if you look at the title of this entry and think I forgot how to spell, you can also move on. These are not the droids you are looking for...

OK for all you techno geeky people out there - I have the wonderful job of IT Manager and System Administrator for ABC Therapeutics. Of course that is in addition to my other job duties including occupational therapist, CEO, and janitor.

When you wear so many hats you sometimes start to think that you actually have the competence to be doing all the jobs that you take on. This can be dangerous.

I am one of the original computer nerds though. I built a Heathkit Z80, loaded my programs off of cassette tapes on a TRS-80 Model III, and ran an Atari BBS off a 300 bps acoustic coupled modem. Back in those days we wondered, "Why do we need speeds over 1200 bps? You can't even read that fast?" Mt war dialer ran all night, sequentially searching telephone numbers until it found a carrier. I wonder how many people I woke up in the dead of night to the sounds of my modem?

I had my souped up Atari 130xe with a 320k Hi-speed OS jerry rigged via a MIO 256k to a Lapine LT2000 20 mb hard drive and a NEC D5126 20 mb hard drive via a Western Digital controller. Life was good until my controller caught on fire,. and to this day no one believes me when I tell them that I found a spot on the motherboard with three fried tracers so I soldered a penny over the tracers and the stupid thing actually ran again after that 'fix.'

Life changed quickly though. PCs took over, the 6502c was a thing of the past, and having small children meant that it was no longer practical to spend my life programming BBS modules. Cars started being equipped with fuel injectors instead of carburetors and I was suddenly as technically useless as the rest of the world. 1990 or thereabouts was the end of my technical expertise.

Old habits die hard though, so of course I never admitted to anyone that I was technically ignorant after 1990. This leads me into tonight's problem.

I was about to purchase a new computer for the home office so I called my friendly Gateway rep and started talking about the relative merits of different systems. Now this guy talked me out of getting a new computer and instead talked me into getting a new video card and some new memory chips.

"How easy are they to put in" I asked with some trepidation. It had been some time from those old soldering days of yore. He assured me that a baby could do it, and in consideration of the fact that I am an IT Manager and in consideration of the fact that I am computer genius in my own mind I figured that a $300 investment in 1 gig of RAM and a hot new video card would be preferable to spending $2500 on a new computer.

I spent the better part of the evening cursing the Gateway idiot who talked me into this idea. My computer is now completely useless and won't even recognize the old RAM or the old video card. They are thinking that I somehow damaged the motherboard while inserting the RAM. This seems so remotely unlikely, but the nighttime technical support dudes don't know what to do when the problem deviates from the scripted book in front of them. Now I have to call tomorrow and see what the real gurus have to say.

There is nothing worse than having a totally functioning computer one minute, and then have it totally non-functional after spending time to actually improve the stupid thing.

Gone are the days of soldering pennies onto flaming hard drive controllers. I wish it could be that easy again.

In the meantime, thank goodness for my daughter's computer. At least I get to come here and rant.

Saturday, January 07, 2006

What I learned in school today.


At the time that my flight plans were made, they seemed like a good idea. I had to go to Nova Southeastern University today to wrap up my last doctoral coursework. Other than dropping off my updated IRB paperwork and touching base with another faculty member there really wasn't much else for me to do there. So I left Buffalo at 6:30 am, arrived in Fort Lauderdale at 11:45 am (head winds were kind of strong today and slowed down the flight). I ran like OJ to get my rental car, I had a nice lunch with several of the faculty, chatted briefly with fellow doctoral students, dropped off my research proposal, and went to class. Class got out at 4:30 pm, so I headed to the airport and got on a 7:10 pm flight back north. I got in at 12:01 am, precisely, which makes my flight an 'overnight flight.' That amused me.

The weather in South Florida wasn't that bad. Here in Buffalo the weather has been miserable soggy wet rain. I got a 'weather alert' email stating that the temperature in Florida might drop into the 30s. I replied that I would pack Bermuda shorts, which was worth a few chuckles from everyone. Who doesn't like a Buffalo winter joke?

Anyway when I got there it was in the low 60s and kind of gray. One of my employees called and asked if I was going to the beach, but I told her that I saw the beach as I flew into the airport. The sky cleared by the afternoon and it was beautifully blue and sunny. It was 'only' 66 degrees so I am sure the natives were freezing, but to this northern boy it really made me stop and think twice about my choice to do Florida in a day.

The whole experience was kind of draining, and I just wanted to document it in case I get the brilliant idea to try this again sometime.

One bright spot (other than the sun which ultimately depressed me anyway) was talking to a cute 5 year old girl named Miranda in the airport. She was kind of active and kept running into my legs while I was dutifully trying to figure out why the power was draining out of the Palm at record speeds (seems that I left the wireless keyboard enabled and the infrared beam sucks up power. Hm.). Anyway the parent of this child was mortified, but I explained that I was used to kids running into me all day so it was no problem. The little girl was just 5 years old but she was a precocious reader. We had some fun reading airport signs.

She started off reading the signs indicating where we were flying, and then started telling me about the signs she read earlier in the day. "One said NO GUNS and NO KNIVES." "Yes," I answered, "we want everyone to be safe on the plane. Then she scrunched up her nose the way five year olds do and said, "Well then what is wrong with bringing 'ornaments' on the plane." I told her that I thought ornaments were fine, but she was insistent, "The sign said NO GUNS and NO KNIVES OR OTHER 'ORNAMENTS.'" Obviously the sign must have said 'armaments' but this was too good of an opportunity to pass up.

"Well why do you think there shouldn't be 'ornaments' on the plane?" I asked her, scrunching up my own nose. She got really serious, and said, "I understand about guns and knives, because they are bad. Maybe they don't want the ornaments to break, because when they break the glass is really sharp and some baby might get cut on it."

"You know," I said, "You are probably right. Ornaments probably woudn't be safe at all." After that she continued telling me about how she would have plastic ornaments when she grew up and she would bring them onto the plane and give them to the pilots. Then we read more signs.

I thought a lot about that conversation on the flight home. Today I talked about Medicare policy for powered mobility devices and continued competency/continuing education policies in different states . There were other topics too. But I think I enjoyed my conversation with Miranda the most.

Thursday, January 05, 2006

Universal Pre-Kindergarten: Who will pay the price?



I talked a little about Head Start a couple weeks back, discussing the merits and weaknesses of the program.

California released an interesting study about the merits of UPK, (Universal Pre-Kindergarten). For details, click here.

One of the primary problems with Head Start that I discussed was the problem with hiring and retaining college-educated teachers. The new California study makes estimates "based on the assumption that the preschools would follow quality standards such as having low student-teacher ratios and requiring college-educated teachers."

What is the likelihood that this will happen?? Don't look to New York as a model. According to authors Herzenberg, Price, and Bradley (2005, September 15) from the Economic Policy Institute, NY early childhood educators with a four-year college degree fell from 42% in 1980 to 23% in 2000 and similar levels in the 2000-04 period.

So the California study says that some amazing benefits will be realized if quality programs are provided. Questions of the day: do people believe it, and will they be willing to pay?

OT implications? Our profession provides a lot of preschool services with people who are trained below the baccalaureate level, specifically with COTAs. Are preschool services different when they are provided by an OTR?

We don't have the outcome data to talk about specific service levels and relative benefits to kids. But will someone else simply start comparing Head Start and UPK outcomes and begin making broad policy recommendations about levels of mandated education for professional staff? Don't be surprised. In a state like NY, cost of programs is not always a prime consideration. What's more, will teacher unions step up to protect uncredentialed or lowly credentialed professionals, or will the unions see UPK as a growth industry? Don't underestimate the power of the lobby. I encourage people to watch NY and California preschool closely. Change is in the wind.



Reference:

Herzenberg S., Price, M., & Bradley, D. (2005, September 15). Losing Ground in New York early childhood education: Declining workforce qualifications in an expanding industry, 1980-2004. Retrieved from http://www.epinet.org/issuebriefs/216/ib216e-ny.pdf January 5, 2006.

Monday, January 02, 2006

Occupational therapy assessments of child participation in everyday activities


This paper originally included a detailed case study of a child and described use of the Children's Assessment of Participation and Enjoyment and the Preferences for Activities of Children. Because of child confidentiality I cut out the case study for purposes of blog publication. If there is any interest in hearing the 'rest of the story' I will have to get parental permission - and then I will re-post the whole paper. Let me know -


Introduction

According to a recent study, 6.5% of all children in the United States experience some degree of disability or long-term reduction in ability to participate in social role activities (Newacheck & Halfon, 1998). Simeonsson et.al (2003) describes the functionality of the International Classification of Functioning, Disability, and Health (WHO, 2001) model in describing the varied nature of childhood disability. However, they also identify potential problems of the ICF with assessing concepts of function within a developmental context. The new ICF represents an important step forward in understanding the relationship between disability, function, and health for children but it is not a complete model.

There is a need for standards that measure outcomes of occupational therapy intervention. Occupation-based and client-centered types of studies are important for creating an evidence-base for our clinical practice (Foto, 1996). “The outcome of therapy, then, transcends the attainment of a certain level of independence in personal and household activities of daily living. Outcome is measured by the quality of life that a patient is able to live as a result of having achieved a certain level of independence” (Foto, 1996).

The Children’s Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activities of Children (PAC) are assessment tools designed to document the everyday participation and preferences of children for activities outside of school performance (King, et.al, 2004). Since the publication of the ICF there is increased interest among researchers in describing the functional condition of people who have disabilities. Where previous systems published by World Health Organization were designed to document diseases and conditions, the ICF is designed to document function. The CAPE and PAC were developed in context of this renewed interest in function, and they specifically document the functional performance of children in daily activities outside of school.

Review of the Literature

Play, social, and recreational participation are major domains of concern within occupational therapy. The concept of purposeful engagement within these domains is at the absolute core of occupational therapy practice and is reflected in the earliest writings about the profession’s philosophy (Meyer, 1922). Florey (1996, p. 425) states that “occupational therapy must value what it does.” “Do(ing) the ordinary things with conviction of their value” (p. 425) should be carried out in celebration of our rich heritage that was provided by Meyer and the early founders of the occupational therapy profession. In doing so, occupational therapy may achieve its magnificent purpose as described by Reilly (1985, p. 104).

Reilly believed that studying playful interactions was critical for human development, and that play had to have its own “explanatory framework” and “theoretical identity” (Reilly, p. 115, 1974). Brazelton and Greenspan argue that children require developmentally appropriate everyday experiences in order to sustain development over time (p. 115, 2000). Wilcock proposed that humans have an occupational nature, and that through occupation the species is able to promote its own health and survival (1998, pp. 36-37). All of these authors build on concepts expressed by the original occupational therapy theorists. They provide a compelling argument that consideration of normal everyday experiences merits serious study and should serve as a focus of assessment and intervention.

The relationship between childhood disabilities and impaired patterns of participation has been extensively studied and described in the occupational therapy literature. Segal (2000) describes divergent methods of temporal adaptation that are employed by mothers of children who have attention deficit disorder. The contextual reality of having a child with a disability sometimes dictated the temporal strategy used by the parent. Mothers enfolded and unfolded occupations dependent on the available socioeconomic capital available to them at any given time. Similarly, Mosey (2004) describes subtle but important differences in mothering patterns between children who have cystic fibrosis and children who have attention deficit disorder. The mothers of children who have attention deficit disorder spent an inordinate amount of time having to mediate the daily activities of their children and they had a difficult time making this mediation ‘routine’ because of the unpredictable nature of attention deficit disorder.

Poulsen and Ziviani (2004) state that children who have developmental coordination disorders are less physically active and have significantly different patterns of social and physical play than their well-coordinated peers. Okimoto, Bundy, and Hanzlik (2003) described how children with cerebral palsy and developmental delays were found to score significantly lower on a test of playfulness than typically developing peers.
Other researchers found that when children who have disabilities are paired with children who have typical play skills, the play skills of the child who has disabilities tends to improve (Tanta, Deitz, White, & Billingsley, 2005).

Missiuna and Pollock (1996) describe the powerful influence of contextual factors on the limitation of development of play skills. Caregiver values and habits, child factors, physical barriers, and social barriers may all have a negative impact on a child’s ability to develop exploratory and competency-driven play behavior. Therapist appreciation of these factors may lead to assessment and intervention strategies that can mediate the negative effects of these contextual factors. Reed, Dunbar, and Bundy (2000) described the contextual factors that could influence the development of playfulness in children who have autism and their typically developing peers in different preschool settings. Desha, Ziviani, & Rodger (2003) reported that the inclusion of preferred play objects in a clinical environment increased intrinsic motivation to play for children who have autistic spectrum disorders, and thereby could enhance assessment and intervention.

Killegrew (2000) identifies that a child’s skills or abilities may not necessarily dictate the development of everyday routines within a family. Rather, broader ecocultural and contextual factors including perceived time availability, child-rearing strategies, and socioeconomic capital were more likely to dictate routines.

Occupational therapy assessments of participation

Many informal or observation-based assessments are used by occupational therapists to assess the participation skills of children. The Play History (Takata, 1974) was designed as a method to obtain information about a child’s historical and current play participation. The Play Scale and the Preschool Play Scale (Knox, 1974; Knox, 1997) provides a perspective on a child’s play skill development. The Transdisciplinary Play-based Assessment (Lindner, 1993) is an informal scale that allows for observation of cognition, social-emotional, communication and language, and sensorimotor skills. Bundy’s Test of Playfulness (1997) is another informal and observational framework for assessing elements of playful participation of children.

Haley, et.al (1994) developed the Pediatric Evaluation of Disability Inventory (PEDI), which is a functional assessment that is typically used in pediatric rehabilitation. The PEDI measures both capability and performance of self-care, mobility, and social functioning. The WeeFIM (Msall, et.al, 1994) is a similar assessment that measures the amount of assistance a child needs to perform daily tasks.

Coster (1997) reiterates the importance of a ‘top-down’ methodology for assessment and intervention but identifies that there are too few standardized assessments that incorporate this model. The School Function Assessment is offered as an assessment tool that measures contextually-relevant occupational performance of elementary school aged children. She suggests that the traditional assessment tools used by pediatric occupational therapists are focused on individual performance components and therefore do not measure contextually relevant and meaningful skills; rather, the application of these skills to actual occupation must be inferred.

The CAPE and PAC are new instruments that have not been studied extensively. The CAPE provides data on overall participation in activities. The CAPE also provides a specific breakdown of participation in formal and informal activities and participation in recreational, physical, social, skill-based, and self-improvement activities. CAPE scores provide information about the diversity and intensity of participation, who else participated in the activity, where the activities take place, as well as children’s reported level of enjoyment of the activities. The PAC provides data on children’s relative preference for participating in various activities.

After a comprehensive literature review only one study was located that focused specifically on the use of this assessment. Law, et.al (2004) administered the CAPE to 427 children who had some degree of physical disability. They found that diagnosis was not an influential factor, but that gender, age, and level of functioning were explanatory factors for levels of participation as measured by the CAPE. This study underscores the importance of measuring participation and functional capability, and also underscores the limited utility of diagnostic information in understanding children’s participation in non-school activities.

Occupational therapists have studied and documented the relationships between disability and function in children. There is a general concensus in the profession that functional participation in everyday activities is within the domain of concern of occupational therapy. Despite this concensus, the profession’s assessment tools have been based on medical and disability models. Newer models like the ICF that focus on function and participation have influenced development of occupational therapy assessment tools. The CAPE/PAC represents a new model in occupational therapy assessment. Occupational therapists should continue to refine and develop participation-based assessments that will more completely describe patient function.

References:

Brazelton, T.B. & Greenspan, S.I. (2000). The irreducible needs of children: What every child must have to grow, learn, and flourish. Cambridge: Perseus Publishing.

Bundy, A.C. (1997). Play and playfulness: What to look for. In L.D. Parham & L.S. Fazio (Eds.), Play in Occupational Therapy for Children (pp. 52-66). St. Louis: Mosby.

Coster, W. (1997). Occupation-Centered Assessment of Children. American Journal of Occupational Therapy, 52, 337-344.

Cronin, A.F. (2004) Mothering a child with hidden impairments. American Journal of Occupational Therapy. 58 (1): 83-92.

Desha, L., Ziviani, J., & Rodger, S. (2003) Play preferences and behaviour of preschool children with autistic spectrum disorder in a clinical environment. Physical and Occupational Therapy in Pediatrics, 23, 21-42

Florey, L. (1996). Valuing the Ordinary in Zemke, R. & Clark, F. (Eds.). Occupational Science: The Evolving Discipline. (pp 425-429), Philadelphia: F.A. Davis.

Foto, M. (1996). Outcome Studies: The What, Why, How, and When. American Journal of Occupational Therapy, 50, 87-88.

Haley, S., Coster, W. J., Ludlow, I. H., Haltiwanger, J. T., & Andrellas, P. (1992). Pediatric evaluation of disability inventory. Boston: PEDI Research Group, Department of Rehabilitation Medicine, New England Medical Center Hospital.

Killegrew, D.H. (2000). Constructing daily routines: A qualitative examination of mothers with young children with disabilities. American Journal of Occupational Therapy, 54, 252-259.

King, G., Law, M., King, S., Hurley, P., Hanna, S., Kertoy, M., Rosenbaum, P., & Young, N. (2004). Children's Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment, Inc.

King, G., Law, M., King, S., Rosenbaum, P., Kertoy, M., & Young, N. (2003). A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Physical & Occupational therapy in Pediatrics, 23(1), 63-90.

Knox, S. (1974). A play scale. In Reilly, M. (Ed). Play as Exploratory Learning (pp. 247-266). Beverly Hills, CA: Sage Publications.

Knox, S. (1997). Development and current use of the Knox Preschool Play Scale. In L. D. Parham & L. S. Fazio (Eds.). Play in occupational therapy for children (pp. 35-51). St. Louis: C.V. Mosby.

Law, M., Finkelman, S., Hurley, P., Rosenbaum, P., King, S., King, G., & Hanna, S. (2004). Participation of children with physical disabilities: Relationships with diagnosis, physical function, and demographic variables. Scandinavian Journal of Occupational Therapy, 11(4), 156-162.

Linder, T. W. (1993). Transdisciplinary Play-based Assessment: A functional approach to working with young children. Baltimore, MD: Paul H. Brookes.

Missiuna, C. & Pollock, N. (1996). Play deprivation in children with physical disabilities: The role of the occupational therapist in preventing secondary disability. American Journal of Occupational Therapy, 45, 882-888.

Msall, M.E., DiGaudio, K., Rogers, B.T., LaForest, S, Catanzaro, N.L., Cambell, J., Wilczenski, F., and Duffy, L.C. (1994). Functional Independence Measure for Children (Wee-FIM). Conceptual basis and pilot use in children with developmental disabilities. Clinical Pediatrics, 33, 421–430.

Newacheck, P. & Halfon, N. (1998). Prevalence and impact of disabling chronic conditions in childhood. American Journal of Public Health, 88(4), 610-7.

Okimoto, A., Bundy, A. & Hanzlik, J. (2003). Playfulness in children with and without disability. In C. Royeen (Ed.), A compendium of leading scholarship: Pediatric issues in occupational therapy (pp. 254-267). Bethesda , MD : AOTA Press.

Poulsen, A. A. and Ziviani, J. M. (2004). Can I play too? Physical activity engagement patterns of children with developmental coordination disorders. Canadian Journal of Occupational Therapy, 71(2), 100-107.

Reed, C.N., Dunbar, S.B., & Bundy, A.C. (2000). The effects of an inclusive preschool experience on the playfulness of children with and without autism. Physical and Occupational Therapy in Pediatrics, 19, 73-89.

Reilly, M. (1974). Play as exploratory learning: Studies of curiosity behavior. Beverly Hills: Sage Publications.

Reilly, M. (1985). The 1961 Eleanor Clarke Slagle Lecture: Occupational Therapy Can Be One of the Great Ideas of 20th Century Medicine in AOTA (Ed.), A Professional Legacy: The Eleanor Clarke Slagle Lectures in Occupational Therapy, 1955-1984, (pp. 87-105). Rockville: AOTA.

Segal, R. (2000). Adaptive Strategies of Mothers with Children with Attention Deficit Disorder: Enfolding and Unfolding Occupations. American Journal of Occupational Therapy, 54, 300-306.

Simeonsson, R., Leonardi, M., Lollar, D., Bjorck-Akesson, E., Hollenweger, J., & Martinuzzi, A. (2003). Applying the international classification of functioning, disability and health (ICF) to measure childhood disability. Disability and Rehabilitation, 25, 602-610

Takata, N. (1974). Play as a prescription. In Reilly, M. (Ed). Play as Exploratory Learning (pp. 247-266). Beverly Hills, CA: Sage Publications

Tanta, K., Deitz, J., White, O., & Billingsley, F. (2005). The effect of peer-play level on initiations and responses of preschool children with delayed play skills. American Journal of Occupational Therapy, 59, 437-45.

Wilcock, A.A. (1998). An occupational perspective of health. Thorofare: Slack, Inc.

World Health Organization (2001). International classification of functioning, disability and health (ICF). Geneva, Switzerland: Author.