Terry Kirkpatrick first met Bob Carey at the Oxford Regional Centre in Woodstock. Terry was working in the Social Work Department and Bob in the Psychology Department. Both had strong backgrounds in Applied Behaviour Analysis and had much in common from the beginning. Terry had recently graduated from the Master of Education program at the Ontario Institute for Studies in Education, and was considering continuing his studies there for the Doctor of Education degree, focusing on Special Education and Adult Education. Before the Ontario government developed a comprehensive plan for the closing of 6 institutions and downsizing of several others, Terry had already placed enough individuals in communities in the Southwest Region to have closed a complete residence at that time  and had a great deal of experience in how to make these transitions successful. He prided himself on ensuring that all clients were successful in making the transition from institution to community. Terry drew on his experience earlier in his career, teaching residents of Rideau Regional Centre at Algonquin College, Lanark Campus (in Perth, Ontario), how to live (semi-) independently in the community, and his time as an Adult Protective Service Worker, working with clients to preserve their residency and quality of life in Cambridge, Ontario. He was consequently thrilled, then, to be assigned the duty of Placement Coordination with responsibility to the Waterloo Regional Office of the Ministry of Community and Social Services. In this initiative, Terry was responsible for the planning and implementation of moves from multiple institutions in the Southwest Region of Ontario of 108 men and women. The “window” to accomplish these discharges  from start to finish, was actually 8 months. Given this narrow time frame, several community services organizations were challenged. Some organizations were eliminated from direct involvement for a variety of reasons, some organizations were literally created in areas where there had previously been only an association, with no direct services, and some organizations were heavily depended upon for leadership and partnership to make this work. So there was involvement from government program supervisors, local advocates and advocacy organizations, community leaders, members of governing boards and committees, senior staff and direct service personnel at the front line, all working collaboratively to ensure success. In the region where Terry was responsible, all 108 people were successfully transferred from institution to community living and remained there five years later. Alas, this was not the experience of several other regions (see below).

After successfully accomplishing this mission, Terry returned to Oxford Regional Centre, this time to the Community Services Department. The interest at that time was to repair and support what was seen by most Community Services Department members, as insufficiently prepared and/or unsuccessful placement experiences. Failure rates (meaning clients placed in communities, but returned to Oxford Regional Centre within the year or two following placement) ranged from 12% to greater than 25%. One agency in particular had a 50% failure rate for their placements – 4 of 8 people placed had already been returned to Oxford Regional Centre within the first year after placement. 

As Bob has already pointed out, most agencies had very low levels of training in effective behaviour management strategies, and some had very strong ideological postures that gravitated against taking intensive efforts at managing challenging behaviour (such as offensive personal habits like fecal smearing, spitting, public urinating, screaming, swearing, and other “unsocialized” habits; aggressiveness such as hitting, self-harm, kicking, breaking and throwing objects, biting, etc.); and a host of behaviours indicative of distress (such as crying and sobbing, refusal to eat, withdrawal, refusal of self-care or participation in recreational activity, etc.). Terry noticed in his work that, in such “trouble spots”,  there was often  “system level” obstacles preventing successful transition of individuals into the community. In some cases community advocates protested against what they claimed were “dehumanizing” or “authoritarian” methods being used, without being particularly precise about what these acts might be defined as; one board of directors had allegedly made it clear to staff that, if the staff touched a resident, even to redirect them or prevent them from either eloping from a safe location into a dangerous location, they could be fired. Later staff expressed fear and, in one example, a staff member was reported to have been seen to be running away from a resident who was apparently chasing them with a glass of water in hand. The staff member was convinced the resident was going to splash them with the water. In today’s world, it may seem strange, but criteria for admission to almost any residence in virtually any community in those days included the phrase “no behaviour problems”.

For more of a sense of what was going on at that time, the reader is referred to two documents created by Terry for Oxford Regional Centre administration speaking of conditions of the day: “Oxford Regional Centre’s Aging Population: Proposals and Recommendations for Programs and Services” (1987), and “Oxford Then and Now: A Critical Review of Oxford Regional Centre Client Services 1980 to 1986”. (Click on the .pdf buttons below).  We apologize in advance for the uncomfortable use of some of the terminology then in use, but remember, it was written in the late 80s.

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• To summarize the points Terry made at that time: Approximately 50% of residents of ORC in 1987 were older than 45; most of those older than 50, and had, therefore a lengthy period of time becoming accustomed to an institutional life. Choice was limited, and routines pretty regimented. It would be a major culture shock to move to smaller, more intimate, more demanding community living; in addition, most would be strangers to the others into whose company each client might move. Community agencies generally were demanding that new admissions be for people under 45, and “without behaviour problems”.

• Demission “failures” or “placement failures” between 1980 and 1986 were nearly double that of other age groups at that time; this despite the finding that the over-45 groups generally had relatively higher intellectual ability and life skill functioning, and the relatively lower incidence of personality disturbances and behaviour disorders perceived in that group. In addition, of new admissions of clients to ORC (even while attempting to downsize), people over age 50 constituted about 1 in 5.

• During those years, only 5 people from ORC over the age of 50, were able to move to community residences.

• Most community agencies reported that they were not planning expansions specifically for seniors, and professed concern for the aging populations currently in their own jurisdictions.

• There was a perceived inadequacy of adapted equipment, appropriate materials and supports, prosthetic devices, and physical environments adaptable to those with mobility problems, as well as activities and recreation suitable for a more “retirement” style of living.

• There is a need for combinations of behavioural, cognitive, dynamic, ecological and educational interventions, in conjunction with medical/pharmacological assistance, administered by multi- or trans-disciplinary teams of direct-care staff and consultants.

• More needed to be known about those being served, with respect to personality, trauma history, expectations, habits and routines, and the “life lived”.

• There can be too much emphasis on changing the individual through educational and behaviour-management programming without regard to the ecology and other non-client environmental influences on lifestyle and well-being.

• There was a perceived lack of program accountability and feedback mechanisms…very few of the elements…have been implemented anywhere in Ontario (McWhorter and Kappel (NIMR) – Mandate for Quality, Volume II Missing the Mark: An Analysis of the Ontario Government’s Five Year Plan, p. 25)

• Disagreements upon admission of clients to institution previously supported in community agencies often centred around inconsistent degrees of commitment toward working with clients with persistent, obnoxious or disturbing behaviour, non-compliance, or a variety of mildly threatening aggression such as slapping, hitting or kicking others. Area Office personnel might not support the goal of retaining people in their home communities and might show a lack of accountability to the individual being supported.

• Institutions COULD be a “cause” of people having anomalous behaviour, but more often people were arriving at institutions because their “challenging behaviour” was not being managed in community living. We simply were not delivering services and supports for those who didn’t comport themselves well in the environments that were being funded to help them. And problems including abuse and maltreatment and the long term adjustment problems that are often consequent to this were not only merely products of the institutions, but found in families prior to and even after institutionalization, during home visits, for example.

Later in his career, Terry took over a residential treatment program for children and adults with severe autism and extremely challenging behaviours. He instituted training and implementation of treatment programs using Applied Behaviour Analysis. He expanded the program from one site and seven residents to five sites and seventeen residents. Terry then moved over to child welfare and managed the creation and operation of specialized fostering, child protection and family support systems for children with a variety of special needs, including autism, behaviour disorders, neurological conditions, developmental disabilities, and medical frailties. Terry ended his employment career running a multi-service organization providing services to adults with developmental disabilities, seniors, people who were homeless in a small-town/rural county in Eastern Ontario, youth transitioning from care in the child welfare system to the adult residential system for people with developmental disabilities, and worked as a family support worker for the autism Intensive Behavioural Intervention program in Lanark, Leeds and Grenville. During this entire time, Terry also has provided private counseling to couples, families, and individuals, including people with developmental disabilities, and continues to this day. He joins Dr. Bob Carey in promoting Positive Systems Approach training, development and implementation, utilizing the experiences of a nearly fifty year career helping make the world a better place, especially for people with developmental disabilities, and their families.

Terry goes on to say, that in his later experience, there is no source continuing to examine how community living organizations succeed (or fail) in dealing with “behaviour problems” in their clientele, and there is at least anecdotal evidence that individuals with abuse histories, those living in highly dysfunctional families, and those with neurological and developmental disorders that have anomalous behaviour patterns often associated with them, are still needing better care and adaptation to help them live satisfying lives in the community of their choice.