The mission of the AACPDM is to “provide multidisciplinary scientific education for health professionals and promote excellence in research and services for the benefit of people with and at risk for cerebral palsy and other childhood onset disabilities." Our Academy pursues this mission on behalf, and through the activities, of over 1000 members drawn from the broad spectrum of professional disciplines pertinent to childhood onset disability. “Nothing about us, without us” has been the slogan of the international disability movement, to communicate the fundamental principle of inclusion and the integration of persons with disabilities in all matters that effect their lives. Are we ready as an Academy to embrace this notion of fuller engagement with our patients and their carers, arguably our ultimate stakeholders, to help us better fulfill our mission? I posed this question to the members at last year’s annual meeting. I proposed that we consider a stream of membership for persons with cerebral palsy or other childhood onset disabilities or their parents who, by virtue of their life experience and their expertise in a range of occupations or professions, might choose to contribute richly to our education as health professionals, influence our research priorities, and bolster our advocacy efforts to promote services for the benefit of these populations. Surely the time is ripe for us to adopt the concept of “Nothing about them, without them”*.
Since that announcement to plant the idea for your consideration, I have heard from many of you. Most have been very supportive, although it’s fair to say some have been cautiously so. Others have shared legitimate reservations, and I daresay a few might (silently) consider such an initiative as simply too radical. More recently I circulated this message to the past presidents, some of whom were supportive, but most, quite sceptical.
At the mid-year Board meeting we devoted 90 minutes to discussing this issue. There was an excellent exchange of viewpoints. There was universal support for the goal of increased engagement with persons with childhood onset disabilities and parents (PD&P). On the question of whether the creation of a membership stream was the best way to accomplish this, opinions ranged from no, (or at least not yet) to full support. A common theme was the need to be thoughtful about the implications of such an initiative.
An obvious next step is to hear directly from our members. Please complete this survey to gauge your reservations or level of support for the idea of a new membership stream for persons with disabilities and parents (PD&P). The survey includes alternatives to membership as means to achieve similar objectives. You may add your own. Concurrently we shall explore the perspectives of PD&P for their own views and level of interest, which we must not take for granted, and learn how best they think they can contribute to the Academy’s mission.
Your responses to the survey and the results of the consultations with PD&P will inform the Board’s thinking and decisions about this important question. Rest assured any such initiative would have to be approved by the Board, followed by a formal change to the Bylaws, which in turn would require your future vote for final approval. We are a long way yet from that.
The following are some of the concerns that have been raised about such a proposal and my thoughts about these, which you may wish to consider as you form your own opinions about this issue.
The purpose of this initiative is to enhance the mission of the Academy, not to change it. Here’s how:
We are not a patient/parent organization, nor will this initiative in any way change that or open the door to some such risk. Indeed, it is likely that only a small number of interested persons with disabilities or parents would want to become members, and be willing to commit their time to contribute to the activities of the Academy to fulfil the Academy’s mission.
With respect to including “non-health professionals”, the Academy has historically experienced similar concerns about expanding membership. The AACPDM was once exclusively an Academy of medical doctors, and experienced similar existential questions about including other health professionals such as therapists, nurses, teachers, or psychologists. Can there be any question today about the value of our multidisciplinary constitution? Consider PD&P as members representing another “discipline” within our Academy, and some might bring to the Academy their own professional backgrounds (e.g. law, architecture, education, communication, technology, marketing, to name a few) that could enhance the spectrum of disciplines already represented.
This initiative is not a tool to expand membership to enhance the financial health of the AACPDM. Nor should attracting such members be exploitative, taking advantage of persons’ perceptions that this might provide an opportunity for increased access to our members who are experts in the field. Instead, the purpose of this membership stream is to include those individuals who wish to contribute and commit their efforts to enhance the activities of the Academy, by virtue of their personal experiences and expertise, that qualifies them for such a role. Indeed, there is likely to be little by way of direct benefit to them, other than the providing them an opportunity to share their expertise.
Exactly. So why not afford PD&P the opportunity for membership so that their contributions can continue and/or be expanded to:
5. Inclusion of PD&P will change the tenor of the Annual meeting. Presenters might feel compelled to“watch what they say” or “change how they say it”. Some topics presented might be “upsetting for parents to hear”, etc. A parent in the audience might ask an “inappropriate” question or have a “different agenda” that could be an unwelcome distraction or “hijack the discussion”. How would we deal with the communication/speech challenges that some patient might have that impedes their participation?
Not exactly. The Community Council is comprised of representatives primarily from patient & parent groups, condition specific (all CP) foundations, non-profit, charitable and research organizations in addition to parents and persons with disabilities. The purpose of the Community Council is to bring together these multiple stakeholders to partner with the Academy to develop a shared research agenda, to advocate for increased research funding, collaborate on creation of educational materials and informational resources for families. Although the Council does include some parents, who are not affiliated with a specific organization, there is a limit on how many can be included on this Council. In the absence of an affiliation with such an organization, individual PD&Ps currently would not have a voice in the Academy. What we are considering, are PD&Ps as individual members whose contributions might indeed complement some of the activities of the Community Council, but have the opportunity to play a wider role in the activities of the Academy.
Because it is 2017. Because we are the AACPDM with a longstanding broad multi-disciplinary tradition that has been the source of our strength and cause for celebration. The value of including representatives from arguably our most important stakeholders seems self evident, and particularly relevant for what we do and the populations we serve.
This is not entirely new. Other similar organization, such as the AIADD and LEND have allowed full participation of patients and parents. This is also true of national research funding agencies such as PCORI in the US, SPOR in Canada and INVOLVE in the UK, whose grant funding support requires true collaborative efforts with patient populations, in all aspects of clinical research.
Of course, we should proceed thoughtfully and perhaps use a process that allows for some trial period. We can be the pioneers that lead by example or follow others (such as the EACD and AusAACPDM) who are considering similar initiatives.
Unni G. Narayanan, MBBS, MSc, FRCP(C)