Services for Persons with Intellectual and Developmental Disabilities in Montreal: A Nurse’s Perspective

Terry Broda, RN, BScN, CDDN

Abstract

This article provides a glimpse into the field of intellectual and developmental disability nursing in Montreal, Quebec, Canada. Though limited in scope from a geographic standpoint, it provides the author’s perspective and insight into the evolution of services for persons with an intellectual or developmental disability (ID/DD) throughout history, focusing on past and recent trends in Quebec. The author also gives a vision for a more promising future. A case study illustrates challenges and successes in the delivery of health care services to persons with ID/DD in this region. The author draws on personal experience, combines literature review and data collected in interviews with other experienced nurses to illustrate her views.

Keywords:

INTRODUCTION

This article offers a glimpse into the field of intellectual and developmental disability nursing in Montreal, Quebec, Canada. Though limited in scope geographically, it provides historical perspective and insight into the evolution of services for persons with an intellectual or developmental disability (I/DD), focusing on past and recent trends in Quebec. A case study illustrates challenges and successes in the delivery of health care services to persons with I/DD in this region. Drawing on personal experience, literature review, and data collected in interviews with other experienced nurses to illustrate her views, the author also gives a vision for a more promising future.

HISTORICAL PERSPECTIVE

As it did in the United States and in Great Britain, developmental disability nursing in Montreal grew out of the early custodial care that was provided in asylums for the insane^{1, 2, 3, 4, 5, 6}. In the early decades of the 20^th century, there were few available options for children with (I/DD). Many of them were either abandoned by their families at church-run orphanages or sent to live with distant relatives in remote communities. Still others ended up being institutionalized in psychiatric hospitals or in hospital wards for “crippled or handicapped” children, especially if they were seen as having severe and/or complex medical needs and multiple physical handicaps. Many of these children remained in these facilities well beyond the acceptable age, without prospect for productive and fulfilling lives in more appropriate settings.

"Reception Centers": Specialized Institutional Living

In the early 1970s, organized groups of concerned parents advocated alternatives for their children, demanding that they be placed in more appropriate specialized “reception centers.” Although these remained institutionally based in design and in their approaches to care, housing as many as 80 to100 people each, they were purposely built to meet the specific needs of persons with ID/DD. During this time, and until the early 1980s, parents in maternity wards were still being encouraged to “place” their “handicapped” children in one of these centers as soon as possible. In these settings, the residents were often left to wander aimlessly around their ward, with little supervision or sensory-motor stimulation except to watch TV. Basic personal care and hygiene was provided in morning routines and, as necessary, for those with greater needs.

By the late 1980s, the "warehousing" model of care began to change over from large wards to smaller rooms with fewer beds. During this movement toward deinstitutionalization, overall living and caring conditions began to improve considerably, and from behavioral and vocational perspectives, certain philosophies and trends became predominate. Behavior modification theory^{7, 8} and supervised workshops where individuals with I/DD provided “cheap labor,” engaging in “table tasks," such as sorting and packaging various items for profitable business enterprises, are a few examples. This was seen as an honest attempt to prepare such individuals for life in the larger community.

“Readaptation Centers”: Community Based Living

The “reception centers” continued to evolve into the present-day “readaptation centers” which now provide a large range of community-based services. Various service provider agencies operate a number of residential programs in different settings that include foster homes, group homes, supervised apartments and “contractual homes,” which are homes owned and staffed by the agency. Educational and vocational services may include supervised workshops, supported employment, and work placements in community businesses where individuals’ salaries are subsidized by the government of Quebec.

The case management model of care directs delivery of services with an emphasis on a multidisciplinary team approach. Professional educators, social workers, community health nurses, psychologists, and psychiatrists provide consultation and support to individuals with I/DD and their caregivers. For specialized services such as physiotherapy, occupational therapy, and dental care, some agencies rely on services offered in the community while others contract with various health professionals for their services. Persons with I/DD are provided medical services at various government-operated community health centers and clinics and at local and regional hospitals along with the general population.

TRENDS, CHANGES AND CHALLENGES

Although the deinstitutionalization movement crystallized in the late 1980s, the process continues to evolve to this day, as psychiatric hospitals and readaptation centers, hoping eventually to close their doors, continue to discharge residents into mainstream society. This phenomenon, an uphill battle from the start, has met with much resistance and cynicism by concerned parents and institutional employees. Parents fear that without the medical and nursing support systems of such institutions, their children with I/DD may not receive adequate care in the community. Other parents would like service-provider agencies to hire their own “on-site” registered nurses to ensure quality of care. Issues about community care facility standards, adult care requirements, and agencies’ ability and competency to provide quality care and services have plagued this service sector during its restructuring and reorganizing efforts to meet the special needs of persons with I/DD⁹.

For example, how are agencies able to guarantee that medication errors will not occur? How can parents be reassured that necessary access to medical care and hospital services will not be denied? In the old institutions, residents enjoyed ready access to medical care, rehabilitation therapy, radiology services, dental clinics, and laboratory services because they were on the immediate premises. In Montreal the three largest psychiatric facilities, Hospital Louis-Hippolyte Lafontaine, Hospital Riviere-des-Prairies, and Douglas Hospital were self-contained communities with extensive grounds and recreation services, including gymnasiums, swimming pools, and in some cases, even a small bowling alley and its own radio station! For those who have grown up in the age of institutional care, how can mainstream society provide similar opportunities for these activities? Can society meet all the complex support needs of individuals with I/DD?

The answer is a resounding yes! It does, however, require an immense investment of time, effort and resources, not to mention the need for strategic planning, continuous coordination, and the collaboration of all those involved. There is a way to achieve the appropriate level of support that is required for each person with I/DD living in the community; it requires boldness and tenacity, honest advocacy, patience and persistence, and a lot of creativity. Although it is not easy, it is not impossible. It requires that all individuals with I/DD and the people who support them be empowered to provide the highest standard of care, and that they do so with a strong conviction that community living affords the best opportunities for growth and development.

Frank’s Story

Until 1992, Frank had lived most of his life in a psychiatric hospital. When he was a young adolescent, his mother placed him there when she could no longer cope with the demands of his care. Along with mild mental retardation, Frank had epilepsy that remained uncontrolled despite numerous trials and combinations of medications. The instability of his health posed certain safety requirements, such as placing his mattress on the floor and installing protective gym mats and padding on the walls. He wore a hockey helmet for head protection whenever he was up walking, should he fall suddenly as a result of seizure activity. Frank had a "horrible" temper, and was often aggressive toward both staff and peers. Attempts at completing initial neurological investigations in the 1980s were unsuccessful because Frank refused to cooperate during diagnostic testing, acting out violently and causing property damage. As a result, Frank was heavily sedated in order for caregivers to provide care safely.

Frank’s siblings seldom visited him. His mother would visit every few months and he would speak to her on the phone at regular intervals. He was allowed away from the care unit, but only with supervision. In the early 1990s, after adjustments were made with medication use to improve Frank’s level of alertness, he began attending a supervised workshop. Frank was a hard worker, very productive and very proud of his job. He was eventually placed in a foster home in the community and continued working at the supervised workshop. He began attending a social activities club, attended dances on Friday evenings, and went bowling on Saturdays. However, the social club soon revoked his membership because of his chronic hot temper and seizures. Staff persons said they were not equipped to deal with Frank’s challenging behavior and his seizure management needs.

In the mid-1990s, another neurologist was consulted, and this time the idea and possibility of surgical intervention was explored for improved seizure control. Medical and surgical technologies had advanced significantly, and neurosurgical procedures in particular had gained attention by providing well-proven and effective methods in the treatment of intractable seizures ever since Dr. Wilder Penfield’s initial work in the field in Montreal¹⁰.

A strategic plan was implemented to involve Frank in the decision-making process. His family was involved in the planning and their support was solicited during the process. All procedures were explained to Frank in great detail, using language and pictures that he could understand. Frank was told to expect some pain and he was reassured that he would receive analgesics and other support, as required. Either his primary caregiver or his outpatient (OPD) nurse would accompany him to scheduled appointments for diagnostic testing and follow-up with the neurologist and neurosurgeon. This extra support provided reassurance and also encouraged Frank to cooperate for the various tests. A general anesthetic was administered for the MRI, and both his caregiver and OPD nurse stayed with him. He was given a special tour of the intensive care unit prior to surgery, in an effort to prepare him for the surroundings when he awoke. His family, foster home "mom," members of the OPD team, and his peers from the workshop all visited him in the hospital before and after the surgery. It was also arranged for Frank to have a TV in his room.

Over the course of five years, Frank required three craniotomies, and the same strategies were applied during each hospitalization. Frank had to work very hard with both physiotherapy and occupational therapy to regain strength in order to return to his foster home in the community, and he did it! Four years ago, the neurologist told him he could throw away the hockey helmet! He donated it to the hospital for other patients to use. It was one of the happiest days of his life.

Frank no longer has generalized tonic-clonic seizures, and he only experiences occasional mild tremors in the left hand and arm. His anti- convulsant medications have been modified significantly, decreasing the side effects. His temper has improved and is no longer an issue. He sleeps in a “normal” bed and has graduated from the supervised workshop. He’s back at the dances and bowling too. Just recently, Frank switched his jobs from working in a thrift store in the community to washing police cars at the local station house. He has always had great admiration for police officers and so this is almost a dream come true for Frank; he even gets to eat lunch with the officers everyday.

What have we learned from Frank’s experience that would allow us to reassure those who have remained skeptical about the community living movement? First, we have learned that health professionals, including community health nurses, can provide effective care and health services in the community with creative collaboration. Second, we have learned that medical and surgical advances in the treatment of epilepsy have largely contributed to increasing the quality of the lives of those with epilepsy and I/DD. Third, we have learned that effective consultation and strategic planning are key components in the delivery of services to successfully improve the lives of persons we support. Finally, we have learned that work and bowling can be even more fun in "real life," outside of the institution! The literature supports this real-life finding. Frank’s case touches on all aspects of O’Brien’s model of service accomplishments¹¹, which are community presence, choice, competence, respect, and community participation. Frank lives and works in the community. Everyday, he makes choices in his life. He displays competence in his work and his co-workers respect him.

Ongoing Challenges

What challenges lie ahead as we deliver services and health care to persons with I/DD? Unfortunately, there are still quite a few. Numerous studies show that people with I/DD continue to be at risk for medical problems that remain undiagnosed, or untreated. Dental problems, epilepsy, hypothyroidism, sensory impairments, and gastrointestinal problems are the primary "undetected" diagnoses presented by Lennox et al.¹², Ryan¹³ and Kastner¹⁴. Bohmer et al.¹⁵, in their study, find that "constipation was randomly demonstrated in almost 70 percent of the population with ID." Communication difficulties compound these problems since many of our nonverbal individuals may not be able to describe their pain or other symptoms^{13, 16}. As nurses, it is our responsibility to listen more attentively, to look closer, and to search for clues that signal the need for intervention. Observations are key, and various tools can be helpful in collecting the necessary data.

Breau, McGrath et al.¹⁷ have developed a pain checklist for non-communicating children. The checklist includes a list of observable behaviors that a caregiver can document, and the corresponding score indicates, with relatively high accuracy, whether the person is experiencing pain. Heaton¹⁸ introduces the Bristol Stool Form Scale to distinguish the various types of bowel movements so that staff can use the same language to describe each type of stool and better monitor patients for initial signs of constipation. While working with David, a young autistic man with limited verbal communication, our data collection and functional analysis indicated a direct correlation with constipation and self-injurious behavior (head-banging). When the constipation was treated, the head banging significantly decreased. Griffiths, Gardner & Nugent¹⁹ have developed a multimodal approach to examine challenging behaviors in more detail. Not only does it take into account the psychological and environmental factors but also the medical, neurological, and psychiatric aspects to consider when performing a functional analysis.

There is a shortage of physicians who are willing to provide services to this population, and we need to make the best use of our limited resources. In 1982, Steven Reiss coined the term “diagnostic overshadowing,” which referred to the phenomenon that all behaviors seen in persons with I/DD are due to their diagnosis of mental retardation²⁰. It is our obligation to look for both physical and mental illnesses in persons with “challenging behaviors” and not let their diagnosis of I/DD “overshadow” other possibilities. The most effective way is through continued education and training²¹.

EDUCATION

Although seven of Canada’s provinces presently support the decision to require a baccalaureate degree as a prerequisite to enter into the profession of nursing, Quebec has not yet adopted this position. This means that in Quebec nurses are either trained at the college level, or at the university level, or both. Unfortunately, neither of these levels includes any lengthy specialized training in the field of I/DD. Unlike the specialized instruction available at five Ontario universities, doctors trained in Montreal do not receive extensive training in the field of I/DD²². However, a few other types of educational opportunities are presently offered which specialize in I/DD. For example, the PREM-TGC (the French acronym for the Regional Multidisciplinary Expertise Program for Severe Behavior Disorders) is a program that was mandated by the regional health board of Montreal to provide free consultation, education, and training to those who provide support to persons with developmental disability, autism, or traumatic brain injury and severe behavior disorders. Members of this multidisciplinary team attend seminars, training sessions, and conferences in Canada, the US, and Europe to bring back information on the “best practices” being used. They, in turn, research, create and translate material into French and then transmit the information in the form of conferences, training, and coaching to those in the field. Guest speakers specialized in I/DD have also been brought in from other parts of Canada, the US, and Europe to offer seminars and conferences on special topics in the field, and their documentation is made available in both French and English. The PREM-TGC has also established a regular mail and e-mail list of all partners in the field of I/DD, including agencies, schools, parental support groups, and psychiatric hospitals in the region, to notify them of upcoming conferences. This information is also listed on their website at www.premtgc.org.

Another option for further education is a certificate in developmental disabilities offered at the University of Montreal to adult learners who have some experience in the field with a college diploma as a minimum prerequisite. The program consists of ten courses, requiring completion of thirty credits. At the present time, this program is offered only in French.

VISION FOR THE FUTURE

Several recommendations should be considered to improve training of those working with individuals with I/DD²¹.

First, greater involvement of academic institutions in specialized training designated for those working with persons with I/DD is imperative. Doctors and nurses especially need to have advanced training to recognize the complex health needs of these individuals. Ideally, this training should include classroom discussion, presentation of case studies, and hands-on clinical experience.

Second, there needs to be a greater awareness of existing training programs and informational materials. A centralized website, set up by the provincial government or a designated agency, which lists information on all training sessions, conferences and resources available in the region, could increase participation in formal training activities. Presently, several agencies do offer various conferences, but other agencies are not necessarily aware of these available sessions. This information also needs to reach the frontline staff, not just administrators, since the greatest impact is made with education at that level²¹.

Which brings me to the third point; training must occur at all levels within the agency. The management must be both aware of and supportive of the training, and also must provide frontline staff accessibility to it. In addition, parents, educators, and teachers must also have equal access to these training sessions.

Finally, and most importantly, funding must be available to support these training initiatives. This is especially important since education of frontline staff plays a significant role in providing individualized care to persons with I/DD²¹.

As in many other Canadian regions, Quebec is looking for ways to meet increasing demands on a medical system with diminished resources. The situation is made even more difficult as medical professionals often leave the province for various reasons, including very high taxes and extremely low salaries. The Quebec government needs to consider incentives to retain these health professionals, similar to those offered in the US. Another option, currently under discussion in the province, is to establish advanced practice roles for nurses. Cutler²³ and Wisher²⁴ suggest that advanced practice nurses specializing in psychiatry could especially be of help to the underserved population of persons with I/DD and mental health needs. These practitioners, with their extensive clinical experience and holistic perspective, could help provide the necessary individualized and person-centered care that is so desperately required. Quebec, however, does not yet acknowledge nurse practitioners (NPs) in the field of psychiatry or primary health care. Pilot projects are presently underway for NPs in cardiology, neonatology and nephrology (dialysis). It is anticipated that the process to include nurse practitioners among the health care providers that the province recognizes may be a lengthy one. Any delay is unfortunate, but in light of continuing cutbacks in healthcare funding, nurse practitioners could help alleviate some of the lengthy waits for quality care. In the words of Cutler²³, advanced practice nurses “are an underutilized group of professionals who have the potential to make significant contributions to the field.” Let’s hope Quebec will get on board soon!