Life in the Waiting List Line
Robin Springer, S-LP(C) Montreal, QC

Complete article from excerpt printed (Page 10) in January 2001 Communiqué

We have become obsessed with waiting lists in speech-language pathology. Perhaps it is the by-product of an era of increased public attention to the state of our health care and educational systems that is giving us our notoriety-finally. Waiting lists for many of us have become a focus of what we think about, and appear to stand in direct competition with the combined intellectual passions and clinical dedications that to me are the hallmarks of a wonderful profession.

One wonders, then, what is the impact of this situation? Does it affect our professional self-image or our image in the public eye? Does it alter the definition of what we do and how we do it? Does it expand our everyday clinical functioning into the realm of politics and policy making? Is this a developmental marker in the growth of speech-language pathology-a gap between the state of our knowledge and awareness in the area of communication disabilities and needs, and that of the resources which allow us to act on this knowledge, a gap which will someday be closed?

I am a clinician-manager, a professional whose identity resembles those mythological half-and-half characters-mermaids, Pegasus, or maybe even Medusa. My job title falls somewhere between heaven and hell. My accountability is not only to my therapy clients, but also to the staff in my department, and to the senior administrators in my organization. Into the mix also fall all of the clients on the waiting lists, our referral sources, the other players on our multidisciplinary teams (clinical and managerial), and the government, of course, which pays our salaries.

While I am neither historian nor expert, given the number of times I've produced current waiting list numbers, accounted for why these waiting lists have appeared and why they weren't there before, outlined strategic plans and accounted for the methods used to educate budget hewers of our plight, I find myself with the advantage of a broad perspective.

My purposes in writing this are two-fold. One is merely informative: I would like to talk about what I see happening to all of us-the clients, the therapists, the managers. The second is admittedly in a more intellectual vein-to try to set out some observations that may help us understand what drives change in our field; to try, perhaps, to put this into a constructive, rather than defensive, context. It is possible that we may want, in fact, to facilitate rather than to fight this change.

In the Quebec public sector in pediatrics, speech-language pathology is funded both by the Ministry of Health and Social Services (MSSS) and the Ministry of Education (MEQ). Organization of the services in MSSS is through a variety of regional institutions, each with its own mandate and supposed place in line in a continuum of diagnostics to treatment. The main institutions are community health clinics, or CLSCs, hospitals, and rehabilitation centres, which are organized by disability. MEQ has the mandate to provide S-LP services in the schools. An agreement between MSSS and MEQ outlines guidelines for the responsibilities of each of these sectors in provision of services in S-LP.

The hospitals still function as the entry point for diagnostics. Once an initial diagnosis is established, a referral is made to an appropriate community resource, either within the health care sector or to the school boards. The rehabilitation centres can differ quite markedly in organization and provision of services. In education, while the official provincial policy is social integration and normalization, there can be wide variation in educational philosophies; some boards are singularly inclusive while others organize their special needs populations through segregated classrooms, free-flow or resource room models, or the transfer of children to specialized schools. The province is divided along linguistic lines for deafness, and for severe language disorders (la "Dysphasie").

All pediatric centres in the health care sector are faced with lengthy waiting lists in speech-language pathology. The average waiting time for children for diagnostics is minimally six to eight months, and for treatment in the rehab centers between 18-48 months. For many preschool aged children with mild-moderate specific speech and/or language disabilities there are no designated public services as of yet. School board S-LPs have notoriously enormous caseloads.

The course of events for children with diagnosed needs for intervention in S-LP can be not only confusing and the "system" difficult to negotiate, but parents are also advised of waiting lists of up to two or more years for therapy from the moment of diagnosis of a severe language disorder-a very discouraging picture with which to be presented when you have just been told that your child is seriously at risk developmentally. The mathematics are not complicated: children who are diagnosed at four or four and a half, the average age for specific language disorders, may not begin treatment until well after they have entered school.

While there is growing government attention to children diagnosed with Dysphasie-the rough equivalent of SLI-children who present with other types of communication disabilities also suffer from the lack of resources but are not at the moment receiving as much publicity. Most organizations have priority systems in place-even with these, waiting lists persist. A rehab center such as ours, with its combined mandate of severe and persistent motor, hearing, and language disorders, is at a loss in finding ways to prioritize which disability is the more handicapping.

By the time children with language disorders are admitted to our centre, they have usually been waiting at least eight months, if not more. Our own waiting list is presently 18 months. While our primary referral sources-the Montreal area childrens' hospitals-are working hard to provide interim programming, it is, as would be expected, a holding pattern only, given their own waiting lists for diagnostics and prioritization for medical interventions.

What are the effects of this, then, on all of us?

It is perhaps easiest to list the ramifications of a waiting list situation on the clients and their families. The risk factors of deferred intervention are routinely stated, although it is difficult to find hard data to support this thesis. Our experiences do dictate that most significant language problems do not disappear but do in fact become compounded over time. The parents of children on our waiting list are anxious and confused and often in great distress. Even with parent information/education sessions, and with our attempts at facilitating parent peer groups, the anxiety persists. I find it sad to watch the length of time a parent will sit with feelings of self-blame. This may not be a product of waiting lists alone, but not receiving services can exacerbate it. The social worker who conducted groups for parents of children on the waiting list cited the waiting list itself as a prime anxiety factor for these parents.

We all know, as well, that there are those who are better skilled at advocacy and having their children's needs met than others. But even some of these parents get "burned out"-the phone calls, petitions, letters, appointments with administrators, and government representatives all the way up the public organizational chain don't move mountains fast enough for their kids. In addition, private practice S-LPs also have waiting lists. Insurance policies, as we are well aware, are limited with respect to coverage for our services. Action and anger are replaced by a sense of helplessness and a certain kind of resignation. This too is sad to see-the number of angry phone calls I receive these days is fewer-this perhaps may make my job a little less stressful, but underneath it worries me.

For therapists-the "front line" workers, the impact of waiting lists is harder to explain and to accept. The overriding perception of clinicians is of not being able to do a job to the best of one's ability. The symptoms are anger and frustration and a certain initial digging in of heels with respect to changing ways of thinking and approaches to treatment-what waiting lists force us to do. This in turn gives rise to feelings of job dissatisfaction, which lead to further frustration and anger. This reaction is a natural course of events if one looks at the processes of change. A waiting list, however, is not readily perceived as a reason to change. While theories of change abound, they are not the first source of reference in dealing with waiting list situations.

I am asked endlessly why S-LPs are reacting to the waiting lists; why, I am asked, should it impact on a clinician when her/his everyday caseload remains the same? The scheduling demands don't change. All therapists are supposed to be productive and efficient in what they do. Why need the S-LPs be concerned with what is not on their intervention schedules?

Waiting lists have put us-all of us who work in the public sector-in the spotlight. They have made us publicly accountable for every clinical action and decision. They have pushed their way into treatment frequencies and duration, the amount of hands-on time, as well as into documentation, planning, thinking, reading, and researching for clients.

The S-LPs, like other members of our multi-disciplinary teams, have pressing schedules. They are also under the gun ceaselessly to justify these schedules-to continually report the number of clients discharged and the new ones picked up, to constantly explain treatment frequencies and length of intervention, to answer relentless questions about their clinical judgments in treatment methodology-judgments for which some of the research base is sparse.

They also harbour the knowledge that the list of clients waiting for them is endless and no matter how we try to hide the files, in the end each of us must assume responsibility for all of our clients-active or on the waiting lists.

The S-LPs encounter attitude issues; the not quite indifferent attitude of statistics keepers on indirect time, the comments and queries (we sympathize with you) of their multi-disciplinary teammates on whose jobs the waiting lists impact (note definition multi-disciplinary), and the quieter but audible remarks about our incompetence as the root of all this evil (well we don't have waiting lists-obviously you are doing something wrong).

S-LPs feel themselves to be in an ethical bind. There is a constant search for someone to blame: what my staff call the higher-ups (all the way up), the "system," targeted individuals. It engenders a sort of hostility or distrust of peers in our referral sources (the ones who diagnose the children) and of the professionals in other organizations in the education and health care sectors whose mandates cross over with ours. There are battles about who should be providing services and criticisms flying both ways amongst S-LPs in various organizations. Accusations abound, and include the less-than-rational arguments about who really "cares" for the children. The job of the S-LP in an otherwise exciting environment just isn't as much fun anymore.

As for the clinical managers, people who like me who come from the proverbial ranks but whose jobs include responsibility for entire service-the therapy program, if you like, for a department-there too feelings of incompetence and job dissatisfaction prevail which lead also to anger. The anger is often accompanied by dread and maybe even a bit of paranoia. Relationships on all levels appear to be affected. At the department level, there is dread at staff meetings where management of the waiting list is a recurrent theme provoking anger, resentment, and accusations. All from the very people hired with so much delight for their striking intelligence and creativity. There is a dread of hallway-gatherings in hushed tones or of private meetings behind closed doors, or of any massing outside my door…are they coming to tell me that they are quitting? That they're going on strike? Are they filing a grievance with the union? Or are they just going to lunch? For the therapist who asks for an appointment with me-normally a truly happy part of my job-my immediate reaction is ominous. More complaints? (On my less positive days, I find myself asking it is going to be something bad even before agreeing to a meeting time.)

The dread is there because there are no easy answers, because there is not much literature to sink your teeth into for ideas and suggestions, and because I have run out of stress-relief suggestions ("Just do the best job you can," starting department meetings with jokes, or bags of marbles only go so far).

Administratively, there is more dread: dread of admissions meetings during which the numbers of new clients increases, dread of organizational meetings where other department heads question everything we do in the department and comment freely on all decisions and actions. This includes negative comments about the decision our centre made five years ago to admit children with severe language disorders and allusions to the notion that we are holding out for more staff by maintaining waiting lists. There is the pressure from senior administration for increased efficiency in S-LP (translation: get rid of the waiting list) and from the government, which has also demanded that we develop an "alternative measures" program.

There is a dread also for when the phone rings (another angry parent on the line?) or for parent appointments. I have had parents in my office in tears and pleading, parents reaching into their pockets for money, parents who are persistent in regularly contacting me with the hope that visibility or familiarity will lead to quicker services. Funny how the parents want to focus on their number in line as if they're preciously holding up one of those little tickets you pull out at a supermarket when waiting for the meat guy to serve you. There is an acute awareness amongst them of who is where in that perceived line (we do not in fact work on a number system) and anger when it appears someone has gotten ahead in line. Triaging does not sit well with anxious parents.

Anger ends up being a two-way street; it is provoked in others towards us as well. In our more public face, I have heard comments about the "prima donnas" in S-LP who won't change their ways, about how over-rated the significance of language disorders is, or about how we "over"-evaluate. Even though we have been fortunate to add positions-our centre should be praised for its strong commitment to fulfilling its mandate-there seems to be a rule: no matter how many new S-LPs are added, given the difference between in and out (ie., the rate of referrals vs. the rate of discharge) the waiting list will remain. I too find myself in a defensive stance. Conflict boils all around me-therapist-manager, manager-clients, manager-boss, client-organization, therapist-organization, organization-organization…some days, my job isn't too much fun either.

We are now over two years into lengthy waiting lists and have passed the initial stage of reacting. While it is not the case that there is less distress, we have moved on to action rather than reaction and are able to step back more objectively to analyze our methods and approaches to decision-making in intervention. We are developing a harder edge, a greater pragmatism in delivering services.

In a positive light, we are in fact looking at different options for making changes in communication without diminishing quality of service. Again, there is little in the way of research to support our questions about clinical decisions we make in this situation. These include decisions about the basic parameters of a treatment: its frequency, duration, and timing of, particularly over the long run, as well as development and application of prioritization systems or schemas. Our decisions about utilizing other resources-particularly about the use of communication assistants, have great merit for sure, but provoke discord both within our own centre and in the general S-LP community.

The prioritization systems we are developing help but provoke more anger, most certainly amongst those who are rated lower down on the need scale. We meet resistance in trying new things and are not feeling entirely "sure-footed" anyways-we are wary about the service delivery decisions we make.

Our training tells us that the answers need to be printed in a journal first before we act, but we do not have that luxury. I would argue that much clinical change comes from these types of situations, that the new and innovative approaches to intervention in reality do come from creative therapists as much as from research. Despite a strong commitment to clinical research, somehow the perception of a lack of choice in this situation interferes with our looking at what we are doing with an investigative eye.

There has to be some positive impact of the context in which we find ourselves practicing these days. There is a brighter side, most definitely an instructive side and it is imperative that we look at what has come about because of this waiting list line. There are things we have learned which are valuable and contribute to our overall understanding of who we are and what our business is all about. There is information which will help us to be better clinicians (an ongoing process for us all) and which may instigate more research into the clinical issues which have arisen for us. To wax poetic, we must remember that we drink from and fill the cup of research at the same time.

Following are my thoughts are commentaries on some of the issues that the waiting list situation has brought to the foreground for me.

There is a change in the definition of "therapy," both for clinicians and clients. The success of parent training programs is well documented. The parent-oriented intervention program developed by one of our clinicians has surprised us in its effectiveness. It is indeed a fine program (itself one of the positive outcomes of this situation); it includes a section on providing information about the nature of language disorders ("unpacking" the labels) and it teaches parents specifically how to carry out the home programs, which are the staple of waiting list intervention. Copies of the home program go to others who may integrate or carry out the program, where possible (e.g. teachers and child care workers). Maybe because of the context, the participation and dedication to the home programs exceed expectations. Parents' introduction to therapy is as a partnership with limited availability of the partners.

For sure there are those who cannot participate, and there are children for whom it is not appropriate, but on the whole, it seems to work. Children make gains and parents experience success in achieving targets. Right from the beginning, parents understand that "therapy" means a partnership.

Typically, the starting point for many therapists has been individual intervention. In a situation that does not allow for this, we are simply trying a different starting point. This requires creative examination of alternative ways to intervene. Training in-house communication disorders assistants, screening and triage systems, and group therapy are examples. With careful consideration and planning, group intervention succeeds in reducing waiting time.

We are more alert about the depth of our involvement with families. The therapist-parent relationship is a funny animal. It often is perceived as a one-way dependency: the professional and the parent. Our ultimate goal in that relationship should be in fact to turn it around, to terminate it, to have the client and the parent not need us anymore. Our skills lie in getting to that point as quickly as possible. The waiting list situation requires resourceful application of these skills.

There is an increased awareness and understanding on the part of parents and the public in general about language disabilities and about the field of speech-language pathology. Parents, faced with a huge gap of time between being told that their child needs help and when that help becomes available, have taken up the gauntlet and educated themselves. They are serving as potent advocates in the area of speech, language, and communication. With press and publicity, terms such as "dysphasie," "language disorder," and "communication disorder" have become more familiar, better understood, as has the profession for which everyone is clamouring. It's so much more fun when introducing one's profession, to hear, "Oh, you're a speech-language pathologist-I've heard about your situation," rather than "What is speech therapy anyways-something like OT?"

It is curious-sometimes painful-to observe different reactions among therapists to a difficult situation. Some respond with endless ideas and suggestions for changes. Others choose to march down the road of public policy-making and political lobbying. Still others choose to draw strict boundaries between "clinical" and "managerial" activities-a "this is your problem, not mine" stance. They leave the decision-making to those perceived as being paid to do just that. It seems that this situation fosters both rigidity and creativity. It is interesting to watch how the two balance out in groups of professionals.

There is a need for clinical data and research that will give us a more solid ground to stand on for our decision-making issues in intervention. We need creative and innovative ways to support clinical research, given the inherent difficulties of the balancing act of incorporating a research component into our clinical routines.

There is a vibrant curiosity that marks so many of the therapists I know. There is also a sense of hopelessness that is dousing that drive. It would be wonderful to have an easy-access forum to exchange ideas, a reference guide on granting agencies, avenues of support for applying for research monies, and more attention to these kinds of clinical issues from the universities-a means somehow to boost both motivation and self-confidence in a time of challenge.

There has been talk of the changing roles of professionals in a changing economic environment, for example, the use of professionals in a consultant rather than direct capacity. This has elicited a fear of losing control in our profession. We don't have firmly established positions on communication disorders assistants or consensus on the use of volunteers. The waiting list situation heightens these fears-of reduction in need (and therefore number) of S-LPs by categorizing professional activities in levels.

My own experience even in the introduction of now a-la-mode organizational model of program rather than department, which coincided the break through of service delivery models such as transdisciplinarity and flying terms such as "role release," sent me flying over the edge, for sure. In addition, rehab professional training programs are merging and seem to be heading in the direction of greater equivalency in academic preparation. In sailing one talks of feeling the wind at one's back as an indication of wind change; this reference is made also in descriptions of fear-the shiver up the back of your neck. Perhaps perceiving this as a wind change instead of a threat may prove more advantageous in the end for us.

With program rather than departmental organization, the onus of delivery decision-making will fall more and more onto the heads of treating clinicians. Regardless of reaction to issues that arise from a waiting list situation, it is advisable that clinicians concern themselves with decisions being made rather than leave them to purely administrative forces. Without professional input, administrative decisions about treatment can be devastating. One of the centers in Montreal has had its board of directors dictate treatment frequency in speech-language pathology. There is a dire need for all of us to be actively implicated.

For the moment, these waiting lists exist. While it is my hope that no later than tomorrow they disappear, that is unlikely. Although none of the issues touched upon here are new to us, I think it fair to say that the situation is. The opportunity presents itself to take advantage of what is being offered us-new challenges, lots of room for new ideas in all the different arenas-intervention, research, management, and politics too-and a new look at ourselves. I am constantly reminded by my director that S-LPs need only look back over their shoulders to see from whence they have come to feel positive about the future: we have come a long way.

Change rarely occurs as the result of a carefully organized plan. It is more likely thrust upon us and is probably at the root for more than we know in our practices. Its outcome may not necessarily be negative in the long run. For all of those families on our waiting lists, for all of our future clients, and for all of the energetic and impassioned individuals practicing and thinking about practicing in our field, we have an obligation to try for a better picture in the future.

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