Sunday, February 26, 2006

A Need to Support the Mental Wellness of Parents

Explanation of occupational risk with supporting evidence

Parents who have children with disabling conditions are at an increased risk for psychopathology as compared to parents with typically developing children (Fuller and Rankin, 1994). Parenting occupations are more complex and challenging when children have disabling conditions; increased demands on parents contribute to changes in normal parent-child interactions (Anastopoulos, Shelton, DuPaul, & Guevremont, 1993). In addition to the directly negative impact that stress causes to the parent, parental stress has been associated with increased child behavioral problems and intergenerational psychopathology, including depression (Baker, 1994; Ellenbogen & Hodgins, 2004).

Many child-centered and parent-centered factors may have a negative impact on development of normal parent-child interactions. Parent-centered factors include emotional and mental health needs that are unmet or poorly addressed by health professionals that can impact interactions. Although research shows that parents are not always able to follow through on professionals’ recommendations, it is known that they appreciate helpful suggestions for activities that promote child development or make caregiving easier (Humphrey & Case-Smith, 2001, p. 123). Shearn and Todd (1997) identified that there are long-term implications when a child has a disability because the parenting role is extended beyond typical expectations. They also state that the expectation of professionals contributes to levels of perceived stress, indicating that the parent’s needs are not being consistently met.

Several occupational therapy authors have also discussed the particular stresses upon parents whose children are disabled and the impact this has on the orchestration of their occupation (Esdaile, 1993; Primeau, 1998; Larson, 2000; Segal, 2000, Cronin, 2004). This literature has added significantly to occupational therapy’s understanding of parenting occupations through narrative analysis.

Relationship to Leading Health Indicators

According to Healthy People 2010 Leading Health Indicators (USDHS, 2002), mental health is defined as “a state of successful mental functioning, resulting in productive activities, fulfilling relationships, and the ability to adapt to change and cope with adversity. Mental health is indispensable to personal well-being, family and interpersonal relationships, and one’s contribution to society.” Mental health was chosen as a Leading Health Indicator because conditions such as major depression are the leading cause of disability among adults in developed nations such as the United States (USDHS, 2002).

Objective 18-9b of the LHI specifically targets the recognition and treatment of depression, which is reportedly the most unrecognized and untreated mental illness cited in the report. Depression is a leading cause of mental illness in women, affecting them at a frequency twice greater than men (Weissman & Klerman, 1992). Occupational therapists often interact with mothers as the primary caregivers to children, making awareness of maternal mental health issues particularly important for practice.

Developing a wellness program that facilitates parental mental health is critical in supporting the objectives of the Healthy People 2010 initiative. Little progress was made toward Healthy People 2000 objectives that focused on controlling stress and seeking treatment for depression (USDHS, 2002). The Centers for Disease Control and Prevention statistics (as cited in USDHS, 2002) indicate that there was a slight decline in the proportion of nurse practitioners who typically inquire about the parent-child relationship and a greater decline in the numbers of practitioners who ask about affective functioning in their adult patients at all. This indicates that an important need is present regarding parental mental health that is not being met.

Contextual influences

The Healthy People 2010 report (USDHS, 2002) provides strong political contextual support for programs that facilitate parental mental health and prevention of illnesses including depression. The stresses of everyday life are a challenge to all parents and all children, and the fast-pace (tempo) of modern life has a negative impact on society’s collective ability to meaningfully interpret and experience normal occupations (Clark, 1997). This fact underscores the importance of addressing the mental health needs of parents whose children have disabilities. Killegrew (2000) identifies that broad ecocultural and contextual factors including perceived time availability, child-rearing strategies, and socioeconomic capital were more likely to dictate family routines than a child’s skills or abilities. Therefore there is substantial benefit to be gained by providing contextual interventions that promote and support parental mental health and wellness. Additionally, as parents of children who have disabilities have high levels of stress as measured on standardized instruments, parental stress management should be considered as an integral part of all occupational therapy programs for children who have disabilities (Esdaile & Greenwood, 2003).

One potential contextual obstacle to consider is that some research indicates that parents may be hesitant to discuss their stress and associated depression for fear of being reported to child welfare agencies (Heneghan, Mercer, & DeLeone, 2004). However, these researchers also indicate that this effect is partially mediated by a trusting relationship with the practitioner. Despite this, parents appreciated support that they did receive, even when it was only in the form of general written information and resources. These findings provide important contextual information to consider in developing an occupation-based program that supports parental mental health.

Existing programs and strategies

The principles behind the inclusion of parent education and support into an overall occupational therapy program was described by Cohn (2001), who discussed the benefits of waiting room experiences of parents while their children were receiving occupational therapy. Case-Smith & Nastro (1993) described dissatisfaction with occupational therapy when parental needs were not being met; they suggest that open communication and consistency are important factors to consider in promoting parental satisfaction. Despite professional calls for a focus on the occupation of parenting (Llewellyn, 1994), there is not much documentation in the occupational therapy literature regarding use of parenting skills as a therapeutic means. Hanna and Rodger (2002) reviewed the occupational therapy literature and identified that the available evidence regarding the efficacy of occupational therapy intervention for parent training and collaboration is limited. However, research completed outside of the occupational therapy profession supports the use of parent training programs for facilitating parental mental health, particularly in the short term and when the groups are offered to mothers (Barlow & Coren, 2003).

Relation to health promotion model

An ecological model as described by Gorin (1998, p.21) incorporates the interrelationships between parents and their environments that lead to stress and may threaten mental health. This type of model considers the environment from a systems perspective, including institutional, social, and cultural factors. Bronfenbenner (1977) suggests that development occurs within a context or ecology. The family’s microsystem, including the local community institutions such as school, religious institutions and peer groups, are all critical influences on health and well-being. The interaction of these various systems creates forums for development to occur, or not occur. These external factors may constitute significant barriers for parents of children who have disabilities; this makes the ecological model most appropriate to consider for this program proposal.

As an example, institutional factors could include local influences regarding availability of resources in a community and even the availability of professionals to provide services. Specifically, local municipalities all interpret IDEA in accordance with their own district policies and procedures. Navigating local special education systems can be highly frustrating to parents and the associated stressors related to obtaining appropriate services for a child who has a disability can be a drain on mental health.

OT centered wellness intervention: A call to action

Based on the evidence presented herein, there is a strong need for specific attention to be offered to the mental health of parents when their children have disabilities. Generic support has always been a component of occupational therapy intervention in the form of verbal discussion regarding child progression in treatment, or to offer suggestions for a home program. It is now evident that parents need more directed efforts to support their mental wellness. All occupational therapists who work with children should look for ways to support the mental health of parents.

Anastopoulos, A., Shelton, T., DuPaul, G., & Guevremont, D. (1993). Parent training for attention-deficit hyperactivity disorder: Its impact on parent functioning. Journal of Abnormal Child Psychology, 21, 581–596.

Baker, D. (1994). Parenting stress and ADHD: A comparison of mothers and fathers. Journal of Emotional and Behavioral Disorders, 2, 46–50.

Barlow, J. & Coren, E. (2003). Parent-training programmes for improving maternal psychosocial health. (Cochrane Review) In: The Cochrane Library, 2003. Updated quarterly. (Issue 2.).

Bronfenbrenner, U. (1977). Toward an experimental ecology of human development. American Psychologist, 32, 513-530.

Clark, F. (1997). Reflections on the human as an occupational being: biological need, tempo, and temporality. Journal of Occupational Science, 3, 86-92.

Cohn, E.S. (2001). From waiting to relating: Parents’ experiences in the waiting room of an occupational therapy clinic. American Journal of Occupational Therapy, 55, 167-174.

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

Ellenbogen, M., & Hodgins, S. (2004). The impact of high neuroticism in parents on psychosocial functioning in children: Family-environmental and genetic pathways of intergenerational risk. Development and Psychopathology, 16, 113-136.

Esdaile, S.A. (1994). A focus on mothers; their children with special needs and other caregivers. Australian Occupational Therapy Journal, 41, 3-8.

Esdaile, S. A., & Greenwood, K. M. (2003). A comparison of mothers' and fathers' experience of parenting stress and attributions for parent child interaction outcomes. Occupational Therapy International, 10, 115-126.

Fuller, G. B., & Rankin, R. E. (1994). Differences in levels of parental stress among mothers of learning disabled, emotionally impaired, and regular school children. Perceptual & Motor Skills, 78, 583-92.

Gorin, S. S. (1998). Models of health promotion. In S. S. Gorin & J. Arnold (Eds.), Health promotion handbook (pp. 14-38). St. Louis, MO: Mosby.

Hanna, K. & Rodger, S. (2002) Towards family-centred practice in paediatric occupational therapy: A review of the literature on parent-therapist collaboration. Australian Occupational Therapy Journal, 49, 14-24.

Heneghan, A.M., Mercer, M.B., & DeLeone, N.L. (2004). Will mothers discuss parenting stress and depressive symptoms with their child’s pediatrician? Pediatrics, 113, 460-467.

Humphrey, R. & Case-Smith, J. (2001). Working with families. In J. Case-Smith (ed.), Occupational Therapy for Children (pp. 95-135). St. Louis: Mosby.

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.

Larson, E.A. (2000). The Orchestration of Occupation: The Dance of Mothers. American Journal of Occupational Therapy, 54, 269-280.

Llewellyn, G. (1994). Parenting: A neglected human occupation. Parents’ voices not yet heard. Australian Occupational Therapy Journal, 41, 173-176.

Primeau, L. A. (1998). Orchestration of work and play within families. American Journal of Occupational Therapy, 52, 188-195.

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.

Shearn, J., Todd, S. (1997). Parental work: an account of the day to day activities of parents of adults with learning disabilities. Journal of Intellectual Disability Research, 41, 285-301.

Travis, J. & Ryan, R. (2004). Wellness workbook: How to achieve enduring health and vitality. (3rd. edition). Berkely, CA: Celestial Arts.

U. S. Department of Health and Human Services. (2002). Healthy people 2010: Understanding and improving health. (2nd ed.). Washington, DC: U. S. Government Printing Office.

Weissman, M.M, & Klerman, J.K. (1992). Depression: Current understanding and changing trends. Annual Review of Public Health, 13, 319-339.

Monday, February 20, 2006

A Critical Appraisal of Therapeutic Listening


According to Frick (2002, p. 358), auditory training has been used in Europe since the mid-1900s to address sensory processing disorders and these techniques have been recently popularized in the United States. Frick has based her Therapeutic Listening program on the work of Dr. Alfred Tomatis and Dr. Guy Berard, both of whom are French physicians. Both the Tomatis and Berard programs are delivered by specific machines using earphones but these devices do not have FDA approval and have been banned in the United States (Barrett, 2003). Frick (2001) states “With the advent of new technology, similar altered music has become available on compact disc. The discs do not replace either the Tomatis Method or the Berard Method. The compact discs do provide a less intense way to access both the auditory and vestibular systems to impact neural function and integration and are easily available to clinicians in a variety of practice arenas.” The CDs referenced on Frick’s webpages are associated with Ingo Steinbach, a German engineer who also studied Tomatis’ and Berard’s methods.


As defined by the principle founder of this intervention technique, Therapeutic Listening “is a highly individualized method of auditory intervention utilizing electronically altered compact discs in protocols specifically tailored by sensory integrative professionals to match client need” (Frick, 2003). Presumably, the intervention includes a combination of listening to specially enhanced CDs and participation in a sensory-based occupational therapy program. There are very few references to Frick’s program in the literature, so practitioners need to attend her workshops in order to receive specific information about this intervention.

Goals of Treatment:

The goals of Therapeutic Listening are to improve the following functions: sensory modulation, balance, movement perception, exploration, sense of physical competence, praxis, sequencing, social competence, and language (Frick, 2002, p. 360).


Frick (2003) states that “listening is a function of the entire brain; when we listen, we listen with the whole body.” This statement is not specifically explained or qualified, however, reference is made on the Vital Links website to accompanying interventions including postural training, respiratory intervention, and sensory diet. Tomatis (1993) believed that spectral enhancement of high frequency sound ranges would help listeners improve attention and awareness to sound. Because of the intricate linkages between auditory and vestibular systems, he also hypothesized that posture, laterality, and language development would improve when children listened to filtered music.

Appropriate clients for this method:

According to Frick (2002, p.360), clients of all ages can benefit from this technique but younger children (less than two years old) need a modified program that can be monitored by an experienced clinician.

Efficacy research:

The American Academy of Pediatrics (1998) and the American Academy of Audiology (1993) stated that there are no well-designed scientific studies demonstrating the usefulness of AIT. AIT devices, typically associated with the Tomatis and Berard intervention programs, do not have FDA approval and in 1997 the FDA banned the importation of the Electric Ear or any other AIT device made by Tomatis International, of Paris, France (Barrett, 2003).

Gilmor (1999) completed a meta-analysis of Tomatis-styled interventions and found that there was “compelling” evidence of improvement in the children who received intervention. However, all studies included in the meta-analysis had very small sample sizes and design problems with randomization and lack of control groups.

Edelson and Rimland are strong proponents of auditory integration interventions who have published supportive articles on AIT in the literature (1994, 1995). They published a literature review (undated) of auditory integration intervention studies that was widely distributed on the Internet and is frequently cited by parents and professionals as proof that AIT is effective. Many of the supporting studies that they cited in their review were published in newsletters, newspapers, and other forums where there is no rigorous peer-review. Also, they summarily dismissed any study that did not support auditory intervention techniques.

According to the National Research Council (2001, p. 100) “auditory integration therapy has received more balanced investigation than has any other sensory approach to intervention, but in general studies have not supported either its theoretical basis or the specificity of its effectiveness.

Critical appraisal:

There have been many negative opinions of auditory interventions published by respected organizations such as the American Academy of Pediatrics, the American Academy of Audiology, and the National Research Council. It is concerning to me that these techniques continue to be so readily embraced by occupational therapy clinicians who are seeking therapeutic answers for the children on their caseloads. This is a very clear example of how our profession needs to consider evidence-based practice. The profession is collectively concerned about the acceptance of occupational therapy in general and sensory integration/processing interventions in particular. We all need to be as educated as possible on what constitutes appropriate levels of evidence that will be broadly accepted, and subsequently respected, valued, and reimbursed.

Based on the published literature, there is currently very little evidence that Therapeutic Listening or any auditory integration therapy has proven to be an effective intervention. However, that does not mean it is not potentially useful. Rather, we need to conduct appropriate, well-designed studies and publish them in peer-reviewed journals. In the meantime, we need to be very cautious at how we present these interventions to the public.


American Academy of Pediatrics Committee on Children with Disabilities (1998). Auditory integration training and facilitated communication for autism. Pediatrics, 102, 431-433.

Barrett, S. (2003, July). Mental Help: Procedures to Avoid. Retrieved November 22, 2003, from

Committee on Educational Inverventions for Children with Autism, National Research Council (2001). Educating Children with Autism. Washington, D.C.: National Academies Press.

Edelson, S.M., & Rimland, B. (n.d.). The Efficacy of Auditory Integration Training: Summaries and Critiques of 28 Reports (January, 1993 - May, 2001). Retrieved November 22, 2003, from

Executive Committee, American Academy of Audiology. (1993). Position statement: Auditory integration training. Audiology Today, 5, 21.

Frick, Sheila (2001, March). An Overview of Auditory Interventions. Retrieved November 22, 2003, from

Frick, Sheila (2002). Therapeutic Listening: An Overview. In Bundy, A.C., Lane, S.J., & Murray, E.A. (Eds.). Sensory Integration Theory and Practice, 2nd ed. Philadelphia: F.A. Davis.

Frick, Sheila (2003, Spring). What is Therapeutic Listening? Vital Links. Retrieved November 22, 2003, from

Gilmor, T.M. (1999). The Efficacy of the Tomatis method for Children with Learning and Communication Disorders, International Journal of Listening, 13, 12-23.

Rimland, B. & Edelson, S. (1994). The effects of auditory integration training on autism. American Journal of Speech and Language Pathology, 3, 16 - 24.

Rimland, B. & Edelson, S. (1995). Auditory integration training in autism: A pilot study. Journal of Autism and Developmental Disorders, 25, 61 - 70

Tomatis, A. (1993). The Ear and Language. Ontario: Moulin.

Sunday, February 12, 2006

awkward positions

This will be boring for non-OTs - sorry. But it is an issue that begs to be broadcast. I am hoping some students will find this as they do web searches on top-down and bottom-up approaches to practice.


There is a growing divide between academia and practice in occupational therapy. This is not necessarily new. Back in 1972 Phil Shannon wrote a wonderful article talking about the 'derailment' of occupational therapy practice as practitioners were focusing on biomedical models of intervention as opposed to 'biosocial' models - those that were more expansive and systems based.

The problem is that the issue was defined for the profession over 30 years ago and there is still considerable disconnect between academically espoused models or frameworks and what actually occurs in occupational therapy practice 'in the trenches.' The latest iteration of this massive disconnect is reflected in the broad clinical brush-off to the OT Practice Framework (AOTA, 2002). Academics espouse a performance based top down method of intervention, and from my view of current practice most clinicians could care less.

When reviewing advantages and disadvantages of a specific intervention approach it is necessary to identify the nature and quality of that approach. In-depth analysis of occupation as a concept has led some to believe that occupational therapy is only “authentic” (Yerxa, 1967) when an occupation-based approach is embraced. However, there are forces within the profession that pragmatically reject this analysis and practice without considering occupation at all. An overview of these disparate approaches to occupational therapy intervention is helpful to fully understand the schism between those that more strongly identify the advantages and those that more strongly identify the disadvantages.

The Advantages of Occupation-Based Intervention

Many important leaders of the occupational therapy profession have historically professed the advantages of occupation-based intervention approaches. Mary Reilly was concerned with the profession’s adoption of a medical model that did not focus on occupation - but she openly questioned whether or not American society had “tolerance” (Reilly, 1985, p. 91) for the premise that occupation was central to health. Reilly’s conceptual understanding of intervention broadly encompassed the concepts of productive occupation and were not limited to the traditional medical model. She suggested that intervention should be primarily concerned with occupational satisfaction and that the aim should be the support of the patient’s development of competency and achievement oriented urges and the development of pre-conditional skills that support occupational role (p. 100). By focusing on occupation, Reilly believed that occupational therapy could realize its “magnificent purpose” (p. 104).

There has been and continues to be strong and vocal support from academia for occupation based interventions. Important developments in occupational therapy theory have identified that occupation based interventions can include use of occupation as both a means and as ends in intervention, and that there is power in use of occupation in both circumstances (Trombly, 1995; Gray, 1998).

David Nelson’s work is an example of basic research that demonstrates the value of occupation as means. He has completed several studies that have demonstrated the beneficial effects of occupation as a means of improving functional performance; these studies are referenced in his Eleanor Clark Slagle Lecture (Nelson, 1996). Nelson’s contributions are important because of the strength of his methodological work and the support he has been able to demonstrate for occupationally embedded exercise on recovery after injuries. The Well Elderly Research Study (Clark,, 1997) is an example of use of the power of occupation as a therapeutic end following an intervention that focused on lifestyle redesign. This study concluded that preventative occupational therapy reduced the health risks of older adulthood and was widely heralded for its methodological rigor.

The Disadvantages of Occupation-Based Intervention

Despite the vocal support and expert opinion of occupational therapy leaders, and despite some evidence that supports occupation based interventions (both means and ends), the fact remains that many clinicians choose to practice from a reductionistic or more biomedical frame of reference. It is difficult to find literature that has been published by those who see strong disadvantages of occupation based interventions. This may be due to a possibility that those clinicians who believe that there are disadvantages are not likely to be publishing their opinions in peer refereed journals because their focus is on clinical practice and not research or publication.

Still, several opinion pieces have been published that express the inherent disadvantages of occupation-based approaches. English, et. al. (1982) expresses that it is important for occupational therapists to be able “to use many different treatment techniques at various stages in each person’s recovery process in order to give quality care.” (p. 201). Furthermore, they wrote that “the move to confine ourselves to Purposeful Activity destroys our role... [and that] support for the restorative skills of physical disability occupational therapists is necessary for the survival of the practice of physical disability occupational therapy.” (p. 201).

Bissell and Mailloux (1981) documented a declining use of occupation-based interventions in their survey that measured the use of crafts in the practice of physical disability occupational therapy. They posit that “as scientific advancements and overall medical progress brought changes that emphasized technique rather than theory, treatment modalities that appeared more precise were substituted for craft activities in therapy.” (p. 373).

Howard (1991) explored the extent to which third party reimbursement dictated occupational therapy practice. She identified that therapists have to treat within the boundaries of the descriptions of available coverage as they are identified by insurance companies. Thus, there are strong disadvantages to the use of occupation-based interventions, particularly if such services are not likely to be reimbursed.

Most practitioners would argue that the nature of the medical model is entirely “bottom-up.” Practitioners don't see any revolution in health care that the profession is positioned to miss out on. If there will be some revolution, what will happen to medicine? — will there be some wholesale transition to a different value regarding the way medicine is delivered? Despite the publication of the ICF, people would argue that it hasn’t changed the delivery of medicine one whit. The reductionistic practitioners would argue that perhaps we should investigate the possibility that we may need separate health and illness models – particularly if we still wish to participate in the medical arena.


After reviewing the advantages and disadvantages of occupation-based intervention, the original question seems to be even more magnified in its importance: which approach is good, and which is not good? There is strong support from academics for use of occupation based interventions, yet there is evidence that clinicians remain committed to other approaches. These positions seem diametrically opposed and raise important issues that range from the importance of our professional values, the nature of our professional identity, and the reality of the society’s expectations and support of occupational therapy. An understanding of this rift between theory and practice is enhanced by our study of these dynamics.

Thomas Kuhn (1970) detailed the process by which disciplines undergo change and defined a paradigm as a set of values and beliefs that are shared by members of scientific communities or professional groups. Occupational therapy experienced its first paradigm crisis in the 1940s. At that time the core knowledge of occupational therapy, namely occupation, was dismissed as mere common sense while the profession pursued mechanistic explanations of human behavior. This pursuit toward biomedicine was in direct response to society’s demand to produce scientific rationale for medically related interventions. A second paradigm crisis occurred during the 1970s after Reilly’s Slagle Lecture and the subsequent work of her graduate students. When the biomedical model was challenged there was discomfort between the traditional roots of the profession and the newer ways that were available for describing concepts.

What will our next paradigm be? Bottom-up or top-down? We are doing both now, which in all honestly is not a very flattering position.


American Occupational Therapy Association. (2002). Occupational therapy practice framework: Domain and process. American Journal of Occupational Therapy, 56(6), 609-639.
Bissell, J.C. & Mailloux, Z. (1981). The Use of Crafts in Occupational Therapy for the Physically Disabled. American Journal of Occupational Therapy, 35, 369-374.
Clark, F., (1997). Occupational Therapy for Independent Living Older Adults: A Randomized Controlled Trial. Journal of the American Medical Association, 278, 1321-1326.
English, C., et. al. (1982). On the Role of the Occupational Therapist in Physical Disabilities. American Journal of Occupational Therapy, 36, 199-202.
Gray, J.M. (1998). Putting Occupation into Practice: Occupation as Ends, Occupation as Means. American Journal of Occupational Therapy, 52, 354-365.
Howard, B.S. (1991). How High Do We Jump? The Effect of Reimbursement on Occupational Therapy. American Journal of Occupational Therapy, 45, 875-881.
Nelson, D.L. (1997). Why the profession of occupational therapy will flourish in the 21st century: The 1996 Eleanor Clarke Slagle Lecture. The American Journal of Occupational Therapy, 51, 11-24.
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.
Shannon, P.D. (1977). The derailment of occupational therapy. The American Journal of Occupational Therapy, 31, 229-34.
Trombly, C.A. (1995). The 1995 Eleanor Clarke Slagle Lecture: Occupation: Purposefulness and Meaningfulness as Therapeutic Mechanisms. American Journal of Occupational Therapy, 49, 960-972.
Yerxa, E. J. (1985). Authentic occupational therapy: 1966 Eleanor Clarke Slagle Lecture. in AOTA (Ed.), A Professional Legacy: The Eleanor Clarke Slagle Lectures in Occupational Therapy, 1955-1984, (pp. 155-174). Rockville: AOTA.

Wednesday, February 08, 2006

Lucky break?

When I first met Paul we were both in our mid-twenties and working in the same facility: he was doing piece work in a workshop for people who had developmental disabilities, and I was employed as a therapist to provide services to the workers at the site.

Paul was identified as having moderate mental retardation. He had to use a wheelchair for mobility because he had cerebral palsy. Paul's movement was characterized by what is called 'hemiballismus.' What this means is that he would have 'ballistic'-type movements in his extremities that were uncontrolled. So, Paul would be sitting in his chair and suddenly his right arm or right leg would shoot out straight and his body would seem to spasm. These did not last long, but they did occur at a frequency that disrupted his ability to perform activities independently.

Paul was very conscious about this, and over time he became very aware that he could accidentally hurt people if they were standing too close by when his limbs began to spasm. In order to protect others, he developed a habit of tucking his right arm into the seatbelt of his wheelchair. This served as an effective restraint for his right arm's uncontrollable movement, and saved him from significant social embarrassment. As his wheelchair had a one-arm drive mechanism and operated only with the use of his left arm, he saw no need to leave his right arm free where he might accidentally hit a friend or staff member.

I developed a close relationship with Paul and the other members of his house. Outside of work, my wife and I would borrow the agency van and take Paul and his housemates out to restaurants for dinner at the local mall. It was always a wonderful time, and they always appreciated these adventures into the community.

After several years it was determined that Paul could move into a less restrictive environment and that he would benefit from working in a more competitive setting. The nearest program that seemed to meet his needs was approximately 60 miles away, and so arrangements were made for him to move into a new home and to begin his new job.

The going-away party was a tearjerker. Paul was very attached to his housemates, as they were to him. All of his meaningful relationships were at his worksite. I'm not entirely sure why it seemed to be such a good idea for Paul to leave his home and his friends and his work. Sometimes people who have developmental disabilities are easily dismissed, or their feelings are not considered because, well, because they have developmental disabilities. This was an emotional farewell for Paul, and for all of his close friends. We all drank beer, cried, and hugged goodbye.

A couple months went by when I got a phone call from the case manager in charge of Paul's new home. "He just seems depressed, and he won't eat. Can you see him and give us some ideas on how to best set him up so that he can eat?"

Paul never had problems eating before, so this seemed kind of odd to me. Still, I thought that perhaps a visit would cheer him, and if there were some difficulties that the new staff was having with his hemiballismus that I could give them some pointers on how to set him up. We learned to put covers on Paul's drinks, to encourage him to use straws, and to keep knives out of reach. These would be easy pointers to share with the new staff.

When Paul came in, he was slumped over in his wheelchair. He did not smile; in fact, he barely raised his head to make eye contact with me as he was being wheeled in. It was also odd that he was being wheeled in - Paul was fiercely independent and always insisted on pushing his own wheelchair.

I set him up in the cafeteria and brought a tray to him. Paul was clearly depressed - his body posture, his affect, just everything about him was depressed. He couldn't even seem to grip the spoon, and it kept falling out after I placed it in his hand.

As I grabbed Paul's arm to place the spoon in his hand, I felt something different. Very different. His muscle tone seemed dramatically decreased. Normally, Paul's muscles were as springy as a coiled wire, and I would have to duck to get out of the way of his spastic movements and flailing arms. But now there was just nothing there.

"Raise your hands over your head, Paul," I asked. He could barely raise them at all.

I knew that something was desperately wrong. Muscle tone does not just go away like that. And there was no hemiballismus anymore. His arms were just hanging limply at his sides. Even the right one was just lying on the lap tray of his wheelchair - no twitching - no flailing - and no need to be tucked under that seatbelt.

I pulled the case manager aside and she seemed a little impatient. "Can't you just write us a behavioral plan to follow so that we can get him to start doing stuff again? I think he is just feeling sorry for himself, but he will have to get over it and learn that he has to function in his new home."

I guess that when you are developmentally disabled, everyone thinks that things are generally solved by writing behavior plans for you.

I gave her a different answer. "Take Paul to the emergency room at the hospital. Tell them that he needs to see a neurologist. He needs to go." I was not about to try to explain why I was concerned about his muscle tone, and how static brain lesions that cause hemiballismus don't disappear overnight. Actually, I had no idea what could be wrong, but I knew that a neurologist had to figure it out. I shook Paul's hand, and told him it would be ok. I remember how he looked at me, sadly, and simply said, "OK."

I don't know what made the case manager listen to me, but she did. She took Paul to the hospital and the neurologist saw him, and then called me on the phone to hear my concerns.

A few quick cervical x-rays clearly identified the problem: Paul had a C5 spinal cord injury. The nerves that traveled down the spinal column and carried all those spastic impulses to his muscles had been severed and short-circuited.

Still, there was a larger question to be answered - how did Paul get a spinal cord injury??

Turns out that on the very first night he was at the new home, one of the attendants was assisting him with getting from his wheelchair to his bed. Paul was not an easy person to transfer, and you always had to be prepared for his spasms if they came while you were lifting him from one surface to another.

Apparently, the attendant was not careful enough, and Paul had a muscle spasm during the transfer and was unceremoniously dropped on his head. Of course this wasn't documented because this person wanted to maintain their job. Besides, a developmentally disabled person would never tell anyway.

As the truth came to light, the attendant was fired, and Paul was given a cervical collar. The fracture was well on its way to being healed - it was nearly two months old by this time. Paul didn't qualify for inpatient rehabilitation because he was developmentally disabled. On the intake application they didn't ask if he could hold a spoon anymore, or if he use to enjoy Friday nights on the town with his friends at the restaurant or if he always worried desperately that his right arm was one day going to deliver a knockout punch to someone. Instead, they just saw that he was moderately mentally retarded and so they made a bunch of hasty conclusions about his relative value and worth as a human being. Rehabilitation is generally only offered to people who have 'potential' for independence - and as Paul already required 24 hour care, no one saw the need.

Moving away to a new job and more independence was supposed to be Paul's lucky break. Instead he was dropped on his head and broke his neck, which was not lucky.

Paul never went back to his friends, or his old job. He also never had to worry about delivering a knockout punch anymore. His right arm still rests quietly on his laptray, as still and unmoving and impotent as the bureaucracy that was set up to attend to his needs.