This question was posed by an OT student in her comments on my assertion that advocacy groups such as the Icarus Project can provide new ideas - and "re-emergent" practice opportunities - for OTs who want to focus on mental/behavioral health challenges.

How would you address this student's question? What have you done to overcome the inertia of the healthcare system and incorporate attention to mental health issues in "non-mental health" practice venues? How would you turn discussions in the OT literature about the "abandonment" of mental health practice in the U.S. OT community into roadmaps for students wanting to enter this practice niche? Would you suggest different strategies for experienced OTs looking to practice specifically in mental/behavioral health?

I don’t think "re-emerging" in a practice niche is significantly different from identifying or creating new ones. Either way, one has to apply basic career- and/or business-development strategies in order to get noticed and sell one’s vision to the prospective employer and/or clients. Publications like OT Practice and ADVANCE have many feature articles about "non-traditional" practices and how they came to be. They all have basic career- and business-development elements in common, plus the "twist" of personality and temperament the featured OTs brought to the endeavor.

I also don’t think any individual OT can make a practice niche "re-emerge" or emerge for the OT community at large. We can each pursue what interests us the most; talk and write about what and why our version of OT is so fulfilling and engaging, and hope that enough other OTs are intrigued enough to try it themselves so that we achieve a critical mass of recognition as a "go-to" profession in each niche. So the strategies I suggest are straight-forward (though not simple):

- Have the courage of your convictions about OT

- Try it

- See where it takes you.

- Tell others about your journey

- Advocate for OT – in general, as well as in your niche

- Mentor when you can

This blog is ostensibly about emerging OT practices, of which case management is but one example. But there are also existing OT practices that can become "re-emergent" if more OT practitioners consider them in the context of new information. In the U.S., few OTs work in programs specifically for people with mental illness - when formal programs even exist in the current reimbursement system.

But one of the themes of OT "identity and public recognition" - and increasingly, U.S. health care in general - is the concept that people (and insurance companies) will be willing to pay for services that have "comparative effectiveness" and "ROI" (return on investment); in other words, perceived value.

I see potential for OT to be attractive to people with mental illness who not only prefer not to take any medication, but reject the socio-cultural definitions of "normal" and instead embrace their differences. The Icarus Project, based in New York City, describes itself as "Navigating the Space Between Brilliance and Madness", and its purpose as "...a network or people...[that] envisions a new culture and language that resonates with our actual experiences of 'mental illness' rather than trying to fit our lives into a conventional framework." Members of the Icarus Project refer to their perspective as "mad pride".

I first heard about this group from an article in the May, 18 2009 issue of Newsweek. Most of the people associated with Icarus have had bad experiences with medications and some have been institutionalized too. We hear all kinds of stories in the media about people who are "off their meds" and the professional literature is rife with articles about increasing "medication compliance". The Icarus network "reject[s] the notion that the things that are called mental illness are simply something to be rid of". I can see many Icaristas [their name for themselves] being interested in OT services - even paying out of pocket - if we present them in person-centered, occupational terms. But I also believe that any OT working with people who have mental health issues - even if not formally diagnosed - can make a significant contribution to helping people minimize their use of medication.

Although U.S. society is unlikely to embrace "mental diversity" anytime soon, there's at least more extensive mental health parity in the insurance industry regulations. On January 1, 2010, the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act¹ is scheduled to go into effect. It is an expansion of the 1996 law on mental health parity. Of course, the Act doesn't require insurers to cover mental health or addiction services at all; only that if they do cover any such services, they don't apply different restrictions than for other covered services. Depending on how Health Care Reform shakes out, it's quite possible many insurance plans will either dump what mental health coverage they now offer, or restrict other coverage even more than they would've anyway. But for Icaristas (and their employers) who have mental health coverage in their plans, I see opportunities for OT to re-emerge in mental health practice. And OTs in Work practices can be instrumental in promoting to employers the benefits of integrating mental health parity into their benefits package.²

² see Mental HealthWorks (2009) First and Second Quarters 2009

What experiences in your career have awakened you to beliefs you didn't know you had, and/or made you change your mind about any of them?

For me, it took providing disability case management (DCM) services to injured workers to find out how elitist I was as a result of my upbringing. Although my parents overtly taught me not to automatically judge people on the basis of things such as race, gender or nationality, they themselves subscribed to various "-isms", mostly related to social class. Consciously, I rejected their pronouncements of "unworthy-ness" of people I liked or found interesting. But I didn't realize how much of their snobbery I'd absorbed until I started practicing in the work. Comp. System, where most of my clients have been "working class". As my caseload came to be comprised mostly of immigrants from Latin America who speak little, if any, English, the perspective I'd grown up with was challenged even more.

As a DCM, I've met wonderful people who worked at terrible jobs. A significant responsibility for me as a DCM is to do onsite job analyses; so I have had the privilege of seeing a lot of what goes on "behind-the-scenes" in both production and service industries. It's really fascinating, and I learned that many of the so-called "unskilled" or "low-skilled" jobs require skills I myself lack: tolerance for repetition and for lack of autonomy being two big ones.

As my clients let me into their lives and tell me about themselves, I wonder even more how my father - who, as an immigrant himself, had scary and degrading experiences - could still have held such contempt for people just doing their best to make an honest living. I was appalled to find out how much of his snobbery I'd absorbed in spite of myself. In the middle of listening to a client's fascinating narrative, I'd catch myself thinking "snobby" things about the choices my client made, or the perspective s/he seemed to have of the situations. I'd have to mentally shake myself to "clear the debris" from the questions I wanted to ask to keep the conversation open. I don't have to do it as much anymore, but I'm not resting on my laurels: I know someone will come along who will trigger old ways of thinking, so I have to stay alert.

Thank you, Katherine Collmer, for your blog post that was the inspiration for this one.

What strategies do you use to remind yourself to use person-centered language in your professional communication?

I still see the word "patient" used a lot in the health care literature, even though the concept of "person-centered service" is becoming more familiar to the general public via phrases such as "consumer-driven care". The cartoonist Randy Glasbergen recently drew a panel in which a woman says to her doctor, "You have to learn about thousands of diseases, but I only have to focus on fixing what's wrong with ME! Now which one of us do you think is the expert?"

A few years ago, I coined the term "co-consultant" for my own use in referring to the people to whom I offer my OT/CM services. As the Glasbergen cartoon reminds us, human service providers have to consult with the people to whom services are offered in order to determine what will be most relevant for them. Conversely, we are being consulted on what's available to help them meet their wants and needs, and therefore improve their lives as they see them.

Why did I come up with this "alternative" term? Well, some years ago, I had an ongoing email conversation with a doctor in Chile who practiced in communities of indigenous people. We were comparing notes on our experiences working with people from cultures different from our own (98% of my clients in the past 10 years have been from Spanish-speaking countries), as well as in our second languages (his was an indigenous dialect). He brought me up short when he challenged my use of the word "client" to refer to the people I work with, saying it was demeaning. I expressed surprise, saying that in the U.S., we consider it to be somewhat empowering: a "client" is someone who hires someone to provide something, and technically our "clients" have the power to fire us if they aren't satisfied with what they're getting from us. Thus, "client" is more egalitarian a term than "patient". My e-pal responded that for people from countries with little or no democratic history, "client" means dependency and oppression. He gave the example of Cuba and the former Iron Curtain countries of eastern Europe being "clients" of the USSR. Hoo-boy, that got my attention! I started wondering how much my very American use of the word struck a queasy chord somewhere within the non-English-speaking immigrants I interact with.

I asked my e-pal for suggestions for better words. He teased me that because Americans love shortcuts and abbreviations I would probably annoy people if I used the long-winded "people I work with" or "people to whom I provide services". (He gave me all kinds of grief when I would write things like "info." and "rehab." instead of "información" and "rehabilitación".) I good-naturedly replied that "PIWW" or "PTHIPS" don't make pronounceable acronyms, or I might get away with it. When I proposed "co-consultant", he said that was a step in the right direction. Unfortunately, the people with whom I communicate about my "co-consultants" haven't taken to the new term when I've tried to use it. However, my "co-consultants" have indicated they rather like it.

Shea¹ reminds us that "[t]he practice of changing rhetoric...to [person-centered terms]... gently demands that case managers and other providers also change their thinking and behavioral processes in a productive fashion that is not threatening to adopt."

I've found that using "co-consultant" in my thoughts has helped me catch myself losing sight of the person in some challenging situations, and "righting myself" in time. I set up a macro in my documentation template to automatically replace "co-consultant" with "client" as I write. The macro doesn't get used a lot, since I usually refer to people by Mr./Ms. Lastname instead of their "dependent role" in order to keep the "cast of characters" straight. But sometimes it comes in handy.

According to a blog by a British OT with whom I’ve connected on Facebook, a member (I assume by her title: Baroness Finley) of the House of Lords suggested in 2008 that OTs should be involved in evaluating the mental capacity of people requesting assistance to die!

But wait: that isn’t what I consider to be the misunderstanding! Usually it’s non-OTs thinking we’re less than what we are, not so skilled as to literally be involved in an evaluation with life or death consequences. After all, in the U.S., OTs are often treated as 2^nd-class citizens in professional hierarchies: we can’t open a home health case; we have to fight at the state level to be recognized as "qualified" mental health service providers; we still need a physician’s referral even for an initial evaluation…. When I first read Baroness Finley’s comment, I thought, wow, at least with politicians, the British OTs seem to have a more exalted place in their health system than we Americans do!

No, the misunderstanding about OT in the context of Baroness Finley’s statement was from OTs themselves, as reflected in the blogger’s (Sarah Bodell) description of her reaction to Baroness Finley’s remark, as well as in comments from Ms. Bodell’s readers. It seems they don’t really see the ways in which OTs can make a positive difference in how a person perceives his/her quality of life – and thus possibly change the person’s mind about dying of “unnatural” causes, at least for awhile. So I think the blog missed an opportunity for a stimulating exchange on a touchy subject.

I thought maybe OTs don’t work in hospice in the U.K., so I did an online search. The sites that came up¹ mentioned pain management, ADLs and leisure activities as things OTs help people with, but not in ways I believe distinguish OT in end-of-life contexts from “rehab.” situations. In other words, there was nothing to indicate that dying is, in a way, a distinct occupation to which OTs can contribute in ways no one else can.

Bear with me here. There are what I consider to be unique roles and activities associated with the knowledge that death is no longer an abstract inevitability, but staring one in the eye. I believe that maintaining as much independence and participation as possible has more layers of meaning in one’s final chapter than when either recovery or learning to live with chronic challenges is the goal. Therefore, in a sense, we OTs are uniquely skilled in “helping someone die”, even though we aren’t doing anything to actually end someone’s life.

Depression that results from loss of abilities in a terminal situation has elements I believe are distinct from depression in people who don’t have a terminal diagnosis. Saying goodbye is unlike any prior farewell experience when you’re the one who’s leaving forever, no turning back, no do-overs; and it’s a lot of work for anyone trying to do it (or trying to avoid doing it, as the case might be), not to mention for the people trying to help them do it. There’s a lot of rather unique “doing” going on: who better than OTs to help navigate those unfamiliar activities?

After I read Ms. Bodell’s blog, my local newspaper reported the death of the “world’s oldest person” at 115 years old. The article mentioned that the woman said 8 months before that she was happy to be alive, and would happily live another 100 years. She went on to say “I enjoy nothing but eating and sleeping.” That’s a pretty narrow range of occupations, plus it’s the two most commonly associated with depression when done to the exclusion of everything else. Yet this person said she was happy. Do we take context into enough account when we label someone as “depressed”? When it comes to a hot-button issue like “assisted dying”, I think people sometimes hide behind the “convenience” of mental health labels, and fail to see what else might be going on. The discussion on Ms. Bodell’s blog suggests that OTs have difficulty seeing what we have to offer when “recovery” or “rehab” aren’t part of the equation.

As I mentioned in my 8/24/09 post, some people consider being placed in a nursing home (long-term care/LTC facility) tantamount to a life sentence in a prison. The stereotype is powerful enough to make some people view even assisted living facilities as a '"sneaky back door" into LTC, thus fueling resistance to discussing alternatives to current living situations as part of the aging process.

Various organizations and publications develop guidelines for the general public to consult when considering LTC placement for a family member. One example was in Aging Well's e-news ¹, which reviewed some issues of evaluating the quality of life in LTCs. The closing sentence didn't sit well with me: "If you present it as a temporary situation, it might be easier to talk about." But how many people really have confidence that an LTC placement will really be only temporary? I've never been willing to raise anyone's hopes about LTC placement being "temporary" unless I've been confident someone would be available to advocate effectively for services most likely to result in a discharge from LTC if it's at all possible. My reluctance stems in no small part from when I practiced OT in LTCs early in my career; and has not been assuaged by what I have observed when visiting elderly friends in LTC since then.

When I worked in LTC, I "planned prison breaks" with several residents. I didn't necessarily believe at the initial evaluation that every resident insisting that s/he had been inappropriately placed could in fact live safely outside the LTC. However, I was willing to create OT interventions that engaged my residents in developing their own discharge plans, with emphasis on demonstrating their occupational abilities for the powers that be. I made it clear that I couldn't promise I'd "get them out." I believed the process of trying would be occupationally significant, though I didn't use that phrase with my residents. I also believed that the residents that really needed to be there would be able to accept it more easily if they could see for themselves why leaving wasn't an option. This belief was supported by the positive changes in the occupations and levels of participation among the residents for whom discharge wasn't viable.

My resident-clients and I had to swim against such powerful tides as census pressures; institutional "traditions" that squashed individuality; doctors; family members; geography and finances. We experienced the terrible paradox of enjoying the restoration of occupational performance and having their hopes and ambitions undermined at every turn. There were a few successes; but I decided I wasn't temperamentally suited to continue to practice OT in LTCs, so I left for the world of voc. rehab. and disability case management practice. This was well before the Olmstead decision² and the increase in assisted living facilities; but what I've seen in the intervening years hasn't convinced me that things have changed much for the better. The LTCs where friends and in-laws have lived appeared to assume that everyone who wasn't there for sub-acute rehab. absolutely belonged there for the rest of their lives. When I talked to the "inner circle" family members about advocacy issues, none wanted to "rock the boat". Some said they didn't want staff giving their loved one less personalized attention as a result of "meddling family." Others stated that having a non-relative (me) try to help address the possibility of discharge would be seen by staff as "siccing" someone on them for "no good reason." I've been surprised and disturbed that some people believe that LTC staff would retaliate against the residents for anything a visitor says or tries to change about a resident's situation.

My fellow OTs recognize that such responses from family members and other "outsiders" stem from far more than just negative stereotypes of LTC, so I don't need to get off on that tangent now. But such responses speak to the need for OTs in LTCs to be more active "internal" case manager/advocates for their residents. OT advocacy also engages the family members who are struggling to do the best they can for their loved ones, and who perhaps wrongly think that leaving them in LTC is the only alternative.

Several years ago I participated in an online mentoring program for OT students. One of the class assignments that the students and mentors discussed involved a case study of a person newly admitted to LTC. I saw elements in the case that made me question the placement, and I kept challenging the assumptions the students were demonstrating in their analysis of the OT treatment options. They all seemed stumped by the concept that people might be put into LTC for reasons that didn't warrant keeping them there.

I hope that health care reform in the U.S. will result in making aging in place and geriatric case management (GCM) services more available to more people so that OTs can be at the forefront of making sure that the only people in LTC really can't live anywhere else.

An article in Aging Well Magazine¹ tells the story about an elderly woman named Margaret who, for nearly 8 years, managed to stay in her own home despite strenuous efforts to assign her to long-term-care (LTC) "before her time".

The article describes Margaret as an intelligent woman with strong self-advocacy and creative problem-solving skills. She hired the author, a social worker named Carol Heape, to help her continue to live in a house that Margaret had bought and remodeled according to her own specifications while she was fighting to be discharged from a nursing home. OT was never mentioned in the article, so there's no way to know if any of the adaptations or assistive devices Margaret was using had been chosen with any input from an OT.

I'm not going to summarize the article; please read it for yourself online. Meanwhile, I'd like you to consider how an OT in Ms. Heape's Geriatric Case Management (GCM) position might have responded to some of the challenges Margaret faced:

• Margaret couldn't afford more than a few hours per day of personal care assistance, so "was out of bed and in her wheelchair only a few hours each day". If the GCM had been an OT, could s/he have helped Margaret develop ways to spend less time in bed?


• Margaret had a voice-activated phone set up, but it wasn't close enough to her bed - where she spent so much time - for Margaret to be able to use it. I believe an OT-GCM could have helped Margaret find a better EADL match than that - either by finding a different type of communication device within Margaret's limited budget, or creating a more functional user-environment-device interface with the device she ended up with.


• Margaret left her front door unlocked when she was expecting visitors. How might an OT-GCM address this safety and security risk?


• Sometimes Margaret's scheduled care provider would fail to show up, and Margaret would phone Ms. Heape in a panic. Could an OT-GCM have helped Margaret devise some fall-back strategies to make such incidents less of an emergency?


• Occasionally, Margaret would be hospitalized with pneumonia. Could an OT-GCM been more effective in helping Margaret develop functional and occupational adaptations that would help decrease her risk of pneumonia?


• Margaret received a holiday gift basket and "sent a handwritten thank you note that we all knew had taken her an hour to write with her crippled hands." An OT-GCM could've helped Margaret with joint protection strategies and inexpensive adaptations.


• Ms. Heape helped Margaret evade a return to LTC placement for nearly 8 years. Could an OT-GCM have staved off the placement even longer if some of the issues listed above had been addressed in uniquely OT fashion?

Margaret's limited finances apparently precluded a referral to "official" OT services in her home (and I assume Ms. Heape ruled out Margaret's eligibility for home-health OT under Medicare). But some challenges don't require "medical model" OT interventions, with the rules about physician referrals, frequency and time units, etc.; but rather can be addressed as they come up during "general purpose" interactions between a case manager who's also an OT, and the people the OTCM is serving. In my career as a case manager, I have had many opportunities for "single-visit" OT interventions that addressed challenges my clients mentioned in the course of a CM visit, and which we solved before I left that appointment. I'll save those examples for another time; but I think Margaret's story provides a good frame of reference from which to understand how OTs practicing under case management job titles can continue to practice OT "as we know it".

¹ Heape, C.S. (2009) "A Lesson in Determination" AgingWell 2(2) March/April 2009, 42

Advocacy is an integral part of OT practice in several domains and processes described in the second edition of Occupational Therapy Practice Framework: Domain & Process¹ ["Practice Framework" for short]. I consider OT advocacy in LTC to include intervention planning and implementation that makes sure that every resident of the LTC really has no other options but to live out his/her life in LTC. Every OT - especially those serving people already living in institutional settings, no matter how "home-like" - should be keeping the Olmstead decision² in mind with every interaction s/he has with clients and team members, and advocating for services that will result in the least-restrictive living environments for clients, as mandated by Olmstead.

We're all familiar with people's wide-spread fear of being sent to a nursing home and getting "stuck" there. None of the articles referenced in this essay offers anything to debunk or assuage such fears.

There have been two articles in my local newspaper ^3,4 concerning people whose need for LTC placement resolved, but no one within the LTC seemed to do anything to help them get discharged to more independent living situations. In the first article, the person "suddenly" became able to return to community-based living when the money paying her conservators ran out. In the most recent article, "a court is keeping Isabelle Jessich in a nursing home even though a doctor says she's sane, sober and fit to leave."

OK, I can hear you saying, "but stuff in the news is usually extreme examples: sensationalism sells papers." In response, I steer your attention to articles in OT publications:

• Magasi and Hammel's⁵ article in AJOT about women living in LTC when they could've still lived in the community

   

• Phyllis Erhlich's column in ADVANCE⁶, about a fellow OT's advocacy (and case management) activities that made it possible for a person in danger of being placed in LTC to remain in his home. Erhlich characterized her colleagues' efforts as going "above and beyond" an OT's "typical" responsibilities. I strenuously disagree that such interventions are "above and beyond" any OT's "typical" responsibilities; the Practice Framework and the Olmstead decision support my position.

I acknowledge the sometimes yawning chasm between what OTs know they should do and the systemic constraints that are placed on them. But OTs need to do more to help doctors, payers, local governments and the general public realize how OTs can help identify cost-effective solutions to the challenges of aging and acquired disabilities - and helping to keep people out of expensive LTC is a very visible place to start!. These types of activities involve case management (CM), either provided by the OT, or as a result of the OT's recommending that a case manager become involved, and with ongoing communication and cooperation between the OT and CM. As the AJOT article (and indeed, entire issue) emphasized, OTs are at the forefront of promoting occupational justice⁵. The Olmstead decision supports the concept of occupational justice, even if no such terminology is used. Maybe the current economic crisis and political attention to the flaws in U.S. health care will force people to think more creatively about alternatives to expensive institutionalization. Maybe the political crisis will also make institutions more supportive of OTs who can actually come up with implementation plans!

I want to emphasize that I have a lot of respect for OTs - and their co-workers/teams - providing services in LTC. Without all of them, life in LTCs would be as bleak as the stereotypes and sensationalist articles make it out to be. But OTs can do a lot more to make more LTC stays only temporary. Erhlich's article describes a fine example of OTs doing "what comes naturally." As such, the article echoes what I preach from this blog pulpit about case management being an integral, yet specialized, part of holistic, person-centered OT practice.

A future blog post will be a narrative of how I dealt with some LTC placement challenges when I worked in that setting.

References:

¹American Occupational Therapy Association. (2008). Occupational therapy practice framework: Domain and process (2nd ed.). American Journal of Occupational Therapy, 62, 625-683.

²Olmstead v. L.C., 527 U.S. 581 Sup. Ct. (1999). See also: Cottrell, R. P. F. (2005). The issue is-The Olmstead decision: Landmark opportunity or platform for rhetoric? Our collective responsibility for full community participation. American Journal of Occupational Therapy, 59, 561-568.

³Shiffer, J.E. "2 years and $672,808 gone" Minneapolis Star-Tribune, 2/15/09

⁴ Shiffer, J.E. "Whistleblower: 'I Feel Like I'm in Jail'"   Minneapolis Star-Tribune, 8/23/09

⁵Magasi, S., & Hammel, J. (2009). Women with disabilities' experiences in long-term care: A case for social justice. American Journal of Occupational Therapy, 63, 35-45.

⁶ Ehrlich, P. (2009) Above and Beyond ADVANCE for Occupational Therapists

I got to thinking about this question after I posted last week’s blog on "suffering". As you know, the word "disabled" has its controversies, which include the "pity factor" the term evokes in many "non-disabled" people. I mentioned in the "suffering" essay that there can be secondary gain from using the term, and I believe that is true for "disabled" as well.

I periodically get fund-raising phone calls in which the caller introduces himself as "a 100% disabled [person]". Having spent more than 20 years providing services in a work. comp. system, I view the "100% disabled" characterization in this context as misleading – perhaps deliberately on the part of the fund raising script writer(s). This introduction annoys me: as hated as telemarketers are, it’s still a job (even if only as a volunteer); and in my book, anyone with a job isn’t "100% disabled." Insurance/indemnity definitions of degrees of disability are an entirely separate topic, and irrelevant to this essay.

Another fund-raising tool is to offer items such as greeting cards featuring artwork by participants in programs for people with "special needs." Are you more likely to make a donation to the organization – via buying the art – than you would if you received something not produced by the organization’s clients?

If you go to an art exhibition, would you be more inclined to purchase something if you found out that the artist "had problems" than if you had no information about the artist’s "personal characteristics"? Would you decide you liked a piece after all once you found out the artist had "suffered" or had a disability?

As a professional bead artist with vision and visual processing impairments, I have an interest beyond OT in such things. My impairments have significantly affected the way I’ve acquired my skills, as well as my designs and artistic style. Yet I hesitate to mention my visual challenges in the Artist Bio. that’s part of my portfolio and marketing to galleries. I don’t know how such information will affect people’s reaction to my art. Part of me is shameless and greedy enough to welcome any sales I might make because someone pities me. But a much larger part of me wants my work to be appreciated for itself, regardless of what people know about me. Therefore, I don’t include the "tidbit" about my vision in my portfolio.

In my essay on suffering, I cited a quote by a painter who has quadriplegia. For all I know as an OT about the challenges people with quadriplegia face, I consider them somewhat incidental to what it takes to be a painter. A person who paints with brushes held in his/her teeth has an easier time of creating a painting than I, with no talent for painting, do, even with the use of my entire body. So who’s the "disabled" artist here?

Many people who see my creations comment "oh, I wouldn’t have the patience to do that!" I have to laugh, because patience is definitely not one of my virtues. But even though the often-tedious processes of my creations take longer than "normal" as a result of my visual impairments, I find them soothing. If the design challenges outweigh the satisfaction of the problem-solving processes, I quickly get impatient and abandon the piece. Thus, anything I lack the patience for doesn’t get created. Patience stems from many component skills that OTs address by using arts and crafts. So who has the "disability" here – me or the person who "lacks the patience" to do my type of art?

Anita, a reader of this blog, recently asked me what I think of the term "suffer" – as in "the woman ‘suffered a stroke’, the person ‘suffers from schizophrenia’ .…" My short answer is that we should be careful about assigning "intensity" descriptions to another person’s experience based on how we think we’d react to or interpret the situation. We could end up making things worse for a person trying to tap into his/her resilience to maintain hope and optimism.

As the introductory quote suggests, "suffering" is perception rather than fact. So why assume a perception that something is worse than it might actually be if left to the individual to process as his/her unique experience? I believe "suffering" feeds into (as well as on) the medical model’s idea that everything presented to the practitioner needs to be fixed.

The concept of suffering is somewhat slippery, I think. For one thing, although "suffer" has negative connotations, it’s not always "thoroughly bad." For example, some people might achieve some sort of secondary gain from identifying their experience as "suffering" – or eliciting that assumption from others. Other people might have religious, spiritual or even "practical" beliefs that view "suffering" as necessary to achieve positive things.

I came across a discussion in a Facebook group¹ of the question "is suffering necessary to produce good art?" One respondent wrote,

"Suffering is only necessary if you want to play into the unfortunate stereotype that the general public believes. Claude Monet's idea of suffering was to shut himself in a room with a good supply of fine wine, and wait until the weather cleared up again, so he could wander his estate and paint. I guess that this isn't so tragic."²

Remember what I said earlier about whether suffering for secondary gain is really "suffering?" If that statement about Monet is accurate, there you have an example of what I mean.

Projecting one’s idea of suffering onto the "sufferer" can lead us astray:

Whatever challenges that woman experiences as a result of her quadriplegia, it doesn’t sound to me like she "suffers from" it.

So, one person’s "suffering" is another’s "transition". I’ll admit I’m cynical when I hear someone talking about how a horrifying experience turned out to be a blessing. I hope it’s true, and not just their whistling past the graveyard. But really: who is anyone to label another’s experience any more than "factually": "surviving" a life-threatening event, or "living with" challenges? Yeah, I know: we can argue forever about what constitutes "living" vs. "just not dead yet;" but that’s the whole point: quality of life isn’t imposed or granted; it’s subjectively achieved. Your idea of heaven could be my idea of hell. The most we can do as OT practitioners is help individuals find the paths that lead away from their hells.

¹ Facebook Group "Art" (Admin.: Matt Merhar)

² Barry Monohon, posted May 18, 2009 to Facebook Group "Art" Discussion

³ Cited in Yerxa, E. J. (2009). The infinite distance between the I and the it. American Journal of Occupational Therapy, 63, 490–497.

In my house I'm the boss. My wife is just the decision maker - Woody Allen

In her article in OT Practice (7/28/08, pgs 15-18), "Working With the 'Difficult' Client", Costa states (pg 16),

"Clients who arouse negative feelings are often those who do not respond to treatment, fail to comply with treatment recommendations, or challenge clinicians' authority. "

I'm surprised to see the concepts of "compliance" and "clinicians' authority" still being presented to health and human service professionals. "Adherence" has become the preferred term, despite Steiner & Earnest's¹ suggestion in 2000 that "[t]he terms compliance and adherence should be abandoned because they subtly exaggerate the importance of the clinician, describe behavior inaccurately, and shed little light on motivations." This quote opens a two-part article² about the "medication interest model" (MIM)³ of interviewing people to determine the best treatment approaches for each one.

Although OT was not mentioned as one of the disciplines contributing to the development of the MIM*, the model is infused with occupational themes. For example, "[M]any patients search, not only for relief from their symptoms...but also seek to regain the chance to play [sports], return to work, recover their sense of self-esteem, and believe in their dreams again." ⁴ The "interviewing tip" for determining a "personalized motivator" and guiding the client "to arrive at the conclusion that the [treatment] is a good idea" is called "The Inquiry into Lost Dreams." If that title doesn't scream potential for OT, I don't know what does!

As the model's title indicates, the MIM is focused on medication use, and relies on the concepts of the Choice Triad:

1. The patient believes something is wrong
2. The patient is motivated to use a medication to do something about it
3. The patient is convinced that the "pros" of the medication outweigh the "cons"

Shea explains that within the Choice Triad, "Patients weigh the pros and cons by looking at three belief sets, generated from three corresponding questions. These belief sets and their corresponding questions are as follows:

1. Efficacy (Does this drug make me feel better?)
2. Cost (Is it worth it to me to take this drug?)
3. Meaning (What does it say about me that I have to take this drug?) ⁵

Does your OT "Spidey Sense" tingle at this like mine does? Meaning tied to self-concept as an underpinning of motivation and decision-making....enough said.

The MIM discusses techniques to find out about people's occupational preferences and desires. You know we OTs are uniquely qualified to enhance outcomes with that information. I think OTs should become familiar with the MIM; explore its applicability beyond just medications use; and use the MIM as a frame of reference when discussing intervention plans with multi-disciplinary teams.

My introduction to the MIM has helped me reflect anew on the successes, as well as the challenges, I have had with my clients, and will help me keep my eyes, ears and mind even more open from now on.
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References:

¹ Steiner, J. F., & Earnest, M. A. (2000). Lingua medica: The language of medication-taking. Annals of Internal Medicine, 132(11), 928.

² Shea, S.C. (2008) The "Medication Interest Model" An Integrative Clinical Interviewing Approach for Improving Medication Adherence-Part 1: Clinical Applications. Professional Case Management Vol. 13, No. 6, 305 Lippincott Williams & Wilkins

* "...the MIM grew directly from the fields of case management, psychiatry, primary care medicine and nursing...." - Shea, 2008 p. 305

³ Shea, S. C. (2006). Improving medication adherence: How to talk with patients about their medications. Philadelphia: Lippincott Williams & Wilkins.

⁴ Shea (2008), p. 310

⁵ Shea, S.C. (2009) The "Medication Interest Model" An Integrative Clinical Interviewing Approach for Improving Medication Adherence-Part 2: Implications for Teaching and Research. Professional Case Management Vol. 14, No. 1, 6 Lippincott Williams & Wilkins

How many of us OTs have proposed arts and crafts activities to people who are resistant to the idea because they believe they'll really stink at it? Or how often have our clients done really well with the component skills of a creative project, only to produce something they don't like the looks of?

Well, as Apple, Inc. says, "there's an app. for that": The Ugly Necklace Contest. This is an annual event, sponsored by a jewelry-making supplies store called "Land of Odds." The entries (not to mention the finalists) range from disturbing to hilarious; merely ugly to truly hideous. The contest is more challenging than you'd think, however. First of all, just because you think it's ugly doesn't mean it is. Ugly is also in the eye of the beholder: one contestant sold her "monstrosity" to an appreciative customer before she had a chance to enter it. (Of course, that customer didn't necessarily have good taste, but given the "rules of ugly" the site lists, the necklace probably didn't really qualify). I could relate to that: several of my creations that I've been bitterly disappointed in have gotten lots of praise from my fellow artists, and they've usually sold before my own favorites have.

An interesting "twist" to the contest is the requirement for entries to include a poem about the necklace. Now, the only thing I know about poetry is that I don't enjoy it as reading material, and certainly have no idea how to write any except so-called 'free form" (which to me means ordinary prose with sentence breaks in odd places). Reading the ones at the Ugly Necklace Contests is re-assuring: it doesn't have to rhyme, or even have a discernible rhythm. It just has to say something about the necklace. The contest rules also require at least 3 different photos of the necklace: one showing it worn by someone; one a closeup of either the entire necklace or a representative section of the necklace that is particularly ugly; and one a closeup of the clasp assembly.

What an opportunity for an OT plan, especially for people with mental illness, cognitive and/or visual deficits! Creating an Ugly Necklace requires at least sequencing, fine motor, eye-hand coordination, visual processing and some problem-solving skills. Planning, organization and color perception are somewhat optional, since deficits in those areas contribute to the "winning" designs. Writing about the necklace can be an excellent outlet for emotions associated with the disabilities being addressed in OT. Using a digital camera, and setting up the required shots, provides more skills challenges and opportunities for the client.

Materials choices fueled by mental illness could, in the context of the Ugly Necklace Contest, be downright inspired! You think I'm kidding? The 2008 winner's materials list stated "The...Wire Caged Beads are recycled hay, grain and water, uniquely formed by our horses' colons, no two are exactly alike. In other words, their turds!"

Clearly, the sponsors of and participants in the Ugly Necklace Contest aren't constrained by any particular concept of "normal"! So it can be a welcoming place for people trying to come to terms with "limitations".

Whether or not the client is interested in competing in the Ugly Necklace Contest, just knowing there is such a thing could take the sting out of "unappealing" results of their OT crafts efforts. I suppose you'd have to be careful about using this project idea with someone who has depression: losing an "ugly" contest could be even more devastating than losing a "regular" one.

The Ugly Necklace Contest is entertaining, so even if you have no "use" for it at work, I recommend you visit it (and vote for your "favorite" during the open voting period each year. This year's ends 7/15/09).