Health Services to Adults with Intellectual and Developmental Disabilities in British Columbia : Building Partnerships in our Communities

Louise Le Cavalier, RN, BSN, MN

Abstract

British Columbia's (BC) Health Services for Community Living (HSCL) program is a province-wide government funded initiative that targets the delivery of community-based nursing and rehabilitation services to adults with intellectual and developmental disabilities (I/DD). In this article, the evolution of services to individuals with I/DD in BC is chronicled and information is presented about BC's HSCL program's organization and activities. The unique roles and community partnerships of HSCL nurses are examined. Important trends, issues and challenges that impact service delivery are discussed.

Keywords: Intellectual and developmental disabilities , British Columbia , Canada , Health Services for Community Living program , community health services , partnerships

INTRODUCTION

Individuals with intellectual and developmental disabilities (I/DD) face unique challenges. Although these persons' rights for dignity, health and safety, independence, self-determination and community inclusion are increasingly recognized, more can be achieved to improve support systems that promote the quality of their lives. In particular, health and social services must be able to meet the needs of individuals with I/DD in our communities. In British Columbia (BC), institutional care came to an end in 1996, when Woodlands, the last of three large provincial institutions for persons with I/DD, was closed. A wide range of government funded services are now based in the community and British Columbians with I/DD live, work and play in BC's urban and rural communities, actively participating in mainstream society. Creative initiatives and partnerships support the development of innovative residential and non-residential programs that are tailored to meet individuals' unique needs. BC's Health Services for Community Living (HSCL) program plays an integral role in promoting individuals' health, safety and access to health care.

In this article, the evolution of services to individuals with I/DD in BC, including the HSCL program, is chronicled, and various trends and issues that impact the delivery of community health nursing services are discussed. The unique and rewarding role of the community health nurse in the HSCL program is examined in light of some the presenting challenges.

BACKGROUND HISTORY

Prior to the 1870s, overcrowded city jails in Victoria and New Westminster provided social housing for the criminally insane, the confused elderly, the difficult to handle orphans, the feeble minded and the mentally ill. It became increasingly obvious that it would be desirable to construct a suitable and separate place for the lunatics, leaving the present jails for the criminals. The first Insane Asylum was built in Victoria, BC in 1872, but overcrowding resulted in the construction of a larger facility a few years later. Located beside the new federal penitentiary in New Westminster, the Provincial Asylum for the Insane opened its doors for occupation in May of 1878. In 1897, the new Hospitals for the Insane Act superseded the previous Insane Asylums Act of 1873, and the asylum became officially known as the Public Hospital for the Insane (PHI). By 1899, difficulties in accommodating retarded patients with the mentally ill were first reported.¹ In the absence of any pediatric services, the PHI had gradually taken in unwanted children with any type of physical, mental and behavioral problem, including those with mental handicaps. Criticism mounted about overcrowding, poor hygiene, unfit care, fire and other safety hazards, and the helplessness of patients at the PHI. In 1913, Essondale opened, serving as another institution for the care of the mentally ill in nearby Coquitlam. By 1929, construction started at Essondale to build additional facilities for housing of frail patients, and the formal training of psychiatric nurses was offered for the first time in BC. In 1937, it was suggested that a separate institutional school for the mentally retarded be set up at the PHI site in New Westminster to free the PHI for the intensive treatment of psychotic patients.

In 1950, the PHI was again renamed to the Woodlands School (TWS), in recognition of its educational emphasis as an institutional school and treatment center for the mentally handicapped². TWS gained national recognition as BC's Phenylketonuria Centre where Dr. Bluma Tischler, the first pediatrician to work at TWS, was researching an experimental diet for children suffering from Phenylketonuria. In 1958, overcrowding at TWS caused the provincial government to convert the Tranquille facility in Kamloops , once used as a sanatorium for tuberculosis patients, to a congregate care facility for persons with I/DD. In 1976, a third facility was created at Glendale Lodge near Victoria in response to long waiting lists for services.

Beginning in the 1960s, great efforts were initiated to return people back to their communities. Community-based services developed, including recreational, social and educational programs; sheltered workshops; foster care; and boarding home services, in keeping with similar international trends and in growing recognition of the importance of goal-directed education and rehabilitative training to foster independent living in community. However, it became clear that the challenge rested not in discharging individuals from the institutions, but in creating sufficient and responsive community-based services that would prevent new admissions and readmissions.

In 1974, TWS was once again renamed to Woodlands to reflect that many residents were no longer children attending school. That same year, the administration of Woodlands was transferred from the Department of Mental Health to the Department of Human Resources, later to become Ministry of Social Services and Housing (MSSH). This was significant, as it reflected the progressive evolution of services for people with mental handicaps around the world and a change in the philosophical orientation from the biomedical to a social model. This new model emphasized that individuals with I/DD were not sick but in need of specific social services and resources in their local communities.

Closure of Institutions in BC

Throughout the 1970s, families and advocates of the BC Association for the Mentally Retarded (now known as BC Association for Community Living) began calling for the closure of large institutions and the further development of community services. Their work and advocacy, combined with the emerging philosophy that people with I/DD had the right to live 'normal' lives in community (normalization) and the UN Declaration of 1981 as the International Year of Disabled People, supported the trend towards deinstitutionalization in BC. A major effort was launched to deinstitutionalize BC's mentally handicapped and to create a Community Living Society to guide transition to community placements³. Downsizing began, and by 1985 Tranquille was closed; closures followed at Glendale Lodge and Woodlands in 1996. BC had effectively become the first province in Canada to end the practice of segregating persons with I/DD in large congregate care facilities.

HSCL Program Initiative - Humble Beginnings

As planning for downsizing progressed in the 1980s, community programs and services were considered ineffective in meeting the needs of Woodlands' more severely challenged and medically compromised residents. In order for individuals to function safely in their new homes and communities, they would require many of the support services once received in the institutions, including health care.

In 1990, an agreement was reached whereby MSSH would provide MOH with dedicated funding and other necessary resources to develop and deliver a network of specialized community-based nursing and rehabilitation services (the HSCL program), nutrition and dysphagia services, preventative dental health services and mental health services. In 1991, the Provincial Advisory Committee on Services for Persons with Mental Handicaps proposed a framework of health and social services specifically targeted to adults with I/DD⁴. It included HSCL, residential services (funded residences, temporary respite and emergency residential care), and non-residential services (day services; supported work placements; self-help skills training and support; behavior and communication support; social work and case management; community care facilities licensing; and family support services). The committee provided leadership in community development and public consultation leading up to the full implementation of services.

The HSCL program was launched in June 1993. Government and community representatives, seasoned institutional staff and community health practitioners joined together in a provincial inauguration event in Vancouver.

Nurses would need to market the HSCL program and reach out to communities in order to gain their trust and acceptance. Unlike their counterparts from the institutions, many community-based nurses lacked the clinical experience and necessary knowledge and skills to care for individuals with I/DD, having had very little if any previous exposure to this client group. Hence, they felt inadequate and ill prepared. It was a slow, gradual and often painful process for these novices who worked tirelessly to familiarize themselves with this interesting service sector, where strong personalities, a complex maze of organizations and strange politics combined to play prominent roles! A retrospective look makes it abundantly clear that a better coordinated approach to providing educational,administrative and clinical support to HSCL nurses and therapists would have benefited everyone concerned, as the HSCL program was being introduced in BC. Lesson number one had been learned, unbeknownst to us!

HSCL - STRUCTURE AND ORGANIZATION

Specialized Nursing and Rehabilitation Services

In BC, individuals with I/DD may receive the same health services from the same health care providers as persons without I/DD, with the addition of specialized nursing and rehabilitation services (HSCL), mental health services and dental health services that target individuals with I/DD. Since 1997, dedicated funding transfers to BC's five health authorities have facilitated the regionalization of all nursing, rehabilitation, mental health and dental health services, which, with the exception of mental health services, are provided under the umbrella of Home Health.

This framework operates in most of BC to promote a high quality of service while allowing for the maximum integration of persons with I/DD in mainstream society, with access to all available health services. The exception is in the Capital Health Region ( Victoria , BC), where HSCL are fully integrated with Home Care Nursing and Community Rehabilitation Services. In this region nurses and therapists provide home health services to all consumers, regardless of the existence of any I/DD. Anecdotal reports indicate that many of these nurses find the full integration of home health services with HSCL problematic, as it fails to recognize the unique aspects of I/DD nursing practice, which presents difficult challenges for health professionals, community living service providers and health care consumers.

The success of the HSCL program depends largely on the nurses' opportunities to build healthy and sustainable partnerships with individuals and families, service providers and community stakeholders, and these can be extremely time consuming processes. HSCL nurses, who work only with individuals with I/DD, can afford to dedicate all of their time and other resources to HSCL activities, and thus to focus all their attention on the multi-dimensional aspect of service delivery that is so characteristic of I/DD nursing practice. Dedicated HSCL nurses are then able to appreciate more fully the unique health needs and responses of individuals with I/DD and they understand the community resource management issues that influence the provision of health care in this service sector. Therefore, HSCL nurses are more likely to find themselves in a better position to influence systems for needed change. They have more frequent opportunities to develop the specialized clinical knowledge and skills needed for I/DD nursing practice, which in turn promotes more efficient service delivery and better outcomes.

Indeed, the idea of specialized services has been a highly sensitive issue that caused quite an "uproar" initially. Strong proponents of the community living movement, including some parents, opposed the idea of using specialized services. They preferred relying on already established generic services in the community. Over time, it was recognized that both generic and specialized services can co-exist, complimenting each other to promote the health and safety of individuals with I/DD. Gradually, individuals and families, service providers, community partners and HSCL nurses have discovered the compatibility of their values and their deep commitment to serving the needs of individuals with I/DD. Today, they collaborate to maximize equal access to specialized and generic health services for individuals with I/DD.

Referral to Other Health Agencies

HSCL nurses recommend, initiate and coordinate referrals to other appropriate health agencies, including other generic services offered in Home Health. These include, but are not limited to, home care nursing, physiotherapy and occupational therapy, speech and language therapy, long term care, palliative care and geriatric assessment teams. Other professional supports that include specialization in complex seating and dysphagia services are also available to HSCL nurses and individuals with I/DD. Services augment already existing core services in the community in order to avoid duplication of services. Resources are allocated according to regional and operational needs. The ongoing participation of HSCL nurses, after referrals are made, ensures the smooth coordination of services, the maintenance of communication between key players, the support of care providers and the joint evaluation of outcomes.

Feeding and gastro-intestinal disorders are common in individuals with I/DD, presenting multiple implications for community care⁵. Resources for dietetic services are inadequate in many parts of BC, as evidenced by the numerous reports of HSCL nurses and dietitians. Dietitians manage heavy caseloads and demanding work schedules, and their abilities to monitor individuals' responses to treatment plans are somewhat limited. HSCL nurses assist by investing much of their time and resources in monitoring individuals' nutritional health, thus filling in existing gaps in services, whenever possible.

HSCL program enhancements in nursing and rehabilitation therapy are needed in response to increased demand for service. In particular, there is a need to provide better access to physiotherapists who are skilled in developing individualized movement and exercise programs for individuals with I/DD who have significant mobility impairments, in order to limit their further loss of function. HSCL nurses and therapists manage heavy and frequently complex caseloads, reducing their availability to provide community health support to individuals and their care providers in need. Decision making regarding HSCL funding and resource allocation is a lengthy process that can seem burdensome. Despite these obstacles, HSCL nurses and rehabilitation therapists work very hard to serve large numbers of individuals and to provide an optimal quality of care.

Mental Health Services

Mental Health Services (MHS) are governed under the responsibility of the provincial health authorities, and five MHS teams are located strategically around BC⁶. Ministry of Children and Family Development (MCFD) social workers initiate referrals and manage waiting lists, with input from MHS teams, HSCL nurses and other members of the individuals' community support teams. HSCL nurses collaborate with MHS teams, individuals and families, social workers and service providers, to conduct assessments of the psychiatric and behavioural support needs of individuals with I/DD, implement various treatment and behavioral support plans, monitor individuals' response to treatment and provide training and education.

Individuals with co-existing I/DD, a mental illness and/or severe behavioural disturbances often require intensive community support services. Behaviors of more challenged individuals can create potentially unsafe situations in the community, occasionally exceeding prudent risk. Adults with dementia whose behavioral support needs exceed available community resources also accentuate caregiver burden. Long waiting lists and limited resources in outpatient services reduce timely access to MHS. A critical shortage of in-patient psychiatry services also strains community resources. Collaboration among all involved parties is critical to the success of all MHS intervention.

Service Principles

All services provided by MCFD Adult Community Living Services branch and the HSCL program are guided by a set of core values and principles⁷. In Table 1, these are described briefly.

Table 1: Core Values and Service Principles*

Value and Principle	Definition
Respect for the Individual	Respect of individual's dignity and human rights Services are designed to meet person's individualized needs
Self-Determination	Services enhance individual's right to control his/her own destiny Services promote participation in planning and decision making
Person-Centered Service Planning	Services are developed through an individualized planning process Planning process recognizes and supports individual's unique characteristics, strengths and needs Personal service plan is reviewed on a regular basis
Family Involvement	Family or advocate is key resource and support in all personal service planning Services support family involvement and relationships Family support agencies are utilized for individuals without natural family support
Maximizing	Services provide support and opportunities for maximizing individual's physical, psychosocial, intellectual, affective and developmental growth
Maximizing Environmental Choices	Services are provided in environments that allow as much individual freedom of expression as possible Environments provide safety and security
Community Inclusion	Services support integration of people with I/DD into the day-to-day activities of life in the community Services support access to same lifestyle and age appropriate services available to non-disabled people in the community

*Source: Ministry for Children and Families & Ministry of Health (1997). Health Services for Community Living: Client Health Care Planning Process Guidelines. Government of British Columbia : Victoria, BC.

Program Eligibility for Services

Individuals must reside in BC, be 19 years of age or older and possess a developmental disability (measured intellectual functioning of approximately 70 IQ or lower, with onset before age 18 and measured significant limitations in two or more adaptive skill areas).

Admission Process - Intake and Screening

Anyone with concerns regarding the health and/or safety of an individual with I/DD may refer to HSCL. Most referrals are initiated by social workers and service providers in local communities. The HSCL nurse coordinates all service intakes and screening to assess appropriateness of referrals and to estimate service needs. Collaborative teamwork begins immediately upon referral, when the nurse communicates with the individual's community support team to initiate the health care planning process. Meetings are held in various community settings to complete assessment process and clarify service requirements and priorities.

Service Goals and Objectives

Service goals and objectives focus on maximizing individuals' potential for health, safety, independence and community integration. Inherent to HSCL program philosophy is the recognition that each individual has the right to lead a high quality life with appropriate community support. Community health nursing services include:

• screening and assessment of individual needs
• health care planning
• health promotion and teaching
• caregiver education and training
• professional consultation
• liaison and referral to other health agencies
• treatment and direct care
• consumer advocacy
• coordination of health services
• hospital discharge planning
• transitional planning (i.e., from children to adult services)
• case management.

 

Health Care Planning Process Guidelines

These guidelines promote a respectful, holistic, systematic and inclusive approach to health care planning for individuals with I/DD⁸. A client-centered approach, effective communication, joint problem solving and collaborative teamwork are seen as integral to effective health care planning. Guidelines outline steps of the health care planning process, recording and reporting mechanisms, lines of communication and respective roles and responsibilities of community partners. Conflict resolution guidelines are used to address issues that cannot be negotiated successfully by other means.

HSCL PROGRAM RESOURCES

A number of joint initiatives among HSCL, MCFD and service providers have resulted in the creation of various sets of guidelines and supporting documents to assist individuals and their families, HSCL nurses and other health professionals, ministry social workers and care providers as they respond to some of the extra-ordinary needs of individuals with I/DD. The following examples provide a glimpse of some of the issues that HSCL nurses deal with in their everyday practice and illustrate some of the tools and resources that are at their disposal.

Guidelines for Anticipatory Health Care Planning and Consent to Health Care

Guidelines for anticipatory health care planning and consent to health care provide guidance in facilitating consent for major and minor health care, end of life decision making and anticipatory health care planning⁸. A decision making hierarchy tool provides direction in the determination of an individual's capability and demonstrates how to apply BC's new provincial Adult Guardianship legislation, which can appear cumbersome to users.

In-hospital Support Guidelines

In-hospital Support Guidelines provide assistance to individuals with I/DD who are hospitalized and who require additional in-hospital support that, if withheld, may jeopardize their health and safety⁹. An individual with highly challenging behavior may require such support. A small discretionary fund is available for such eventualities. The HSCL nurse plays a central role in determining support needs and monitoring use of resources during hospitalization.

Field Guide on Death and Dying

The Field Guide on Death and Dying provides direction when individuals are faced with life threatening illness, are anticipating a planned death at home, or when sudden unanticipated deaths occur¹⁰. The guide assists social workers and service providers in preparing for a death, caring for an individual who is dying, and in determining what actions to take following an individual's death. This comprehensive guide provides information about the roles and responsibilities of parties involved, established reporting and recording mechanisms, the grieving process, and available resources in the community.

The Right to Health Care Project

The Right to Health Care project identified several recommendations, one of which was to strengthen community-based services and expertise. A detailed package of information and resources has been developed that can be used for training purposes in the community¹¹. Issues such as medical advocacy; adult guardianship and consent; health care planning; working in partnerships; effective communication; and documentation are reviewed in this guide.

HSCL Risk Assessment Tool

This tool (unpublished) was developed to capture the complexity of care needs for individuals being served in the Fraser Health Authority by HSCL and the Ministry for Children and Family Development, Community Living Services division. The tool identifies a number of critical factors that are evaluated by health professionals on an ongoing basis and that influence the nature and/or extent of supports needed by individuals with I/DD in their homes and community programs. Individual client factors include stability of health, complexity of care needs and the individual's ability to direct his/her care. Task performance factors include degree of risk for harm from the task, complexity of task, frequency of task performance, knowledge/skill requirements for task performance and predictability of outcome. Care environment factors examine ongoing needs for assessment, planning, intervention and evaluation by health professional; existence of policies and procedures; unregulated care provider (UCP) training requirements; documentation requirements; mechanisms for UCP supervision and support; competence of HSCL professional; and availability of expert clinical consultation for HSCL professional. UCP factors include number of UCPs required for individual's care; frequency of staff changes; UCP standard knowledge/skill base; UCP knowledge and skill requirements for delegation of task to UCP; and UCP ability to maintain acquired skill set. The assignment and delegation of tasks to UCPs are issues that HSCL nurses are very familiar with in their work with service providers.

SOME ISSUES AND CHALLENGES

Unregulated Care Providers

The lack of mandatory education, particularly in the physical health domain, and the lack of practice standards for UCPs, can at times affect their ability to function effectively with individuals with I/DD who experience illness. As a result, UCPs can find themselves unprepared to deal with the care demands of individuals who suddenly become ill or who are chronically ill. Service provider agencies do not necessarily expect their employees to have earned certification in a related field (i.e., resident care aide, home support worker, special education assistant). High rates of staff turnover and absenteeism, low pay and lack of recognition for the value of community work often trouble this service industry. These issues can limit the quality and consistency of care and reduce care providers' readiness for learning.

Fortunately, service provider organizations are recognizing that education of care providers is the joint responsibility of all who support individuals with I/DD. HSCL nurses have been very successful in raising standards of caregiver education and subsequently the quality of care within their communities. Nurses are witnessing improvements in the overall performance of care providers who assist in the management of the many and complex health issues that affect adults with I/DD. Care providers are now responding more appropriately and effectively in various situations, with fewer requirements for coaching and direction when making health care decisions on behalf of adults with I/DD. Individuals with I/DD generally enjoy better health with lower rates of preventable illness and unnecessary hospitalization. HSCL nurses continue to work with their partners to improve overall standards of education and quality of community care. The Registered Nurses Association of British Columbia Guidelines for Assigning and Delegating to Unregulated Care Providers clarifies the professional roles, responsibilities and accountabilities of registered nurses who work with UCPs¹². The Canadian Nurses Association's Code of Ethics for Registered Nurses provides direction when ethical issues arise during the process of delegation¹³.

As a result of the transformation of community living services in BC, mechanisms for monitoring and ensuring adequate standards of service delivery and care in government-funded resources are changing, and so are the roles, responsibilities and accountabilities of community living service providers, community care licensing officers and social workers. Service provider agencies are designing and implementing creative models of residential care, and increasingly, they are accountable for monitoring these resources with less interference from government bodies. Community living service providers work closely with government to contain costs and achieve service sustainability. Nurses continue to monitor the quality of care and services according to their own professional and ethical standards. When issues of concern arise that negatively affect the quality and reliability of services to individuals with I/DD, nurses follow the appropriate channels to ensure that issues are dealt with promptly.

Community Living

In October 2004, BC government passed legislation creating a permanent authority - Community Living BC – it is now responsible for providing services to adults with I/DD and many children and youth with special needs in their home communities¹⁴. The Roeher Institute issued a comprehensive report of the work that led the transformation of community living services in BC¹⁵. The transformation process began in 2001, and a number of important initiatives were instrumental in informing and consulting with key stakeholders including individuals with I/DD and their families, MCFD social workers, community living service providers and HSCL health care providers. Province-wide training events were held to prepare for the final devolution of community living services to the new authority. Transfer of authority from MCFD to Community Living BC occurred in July 2005. The core components of Community Living BC's proposed service delivery model, including independent planning support, individualized funding, and centralized contract management will be implemented over the next several months. Social workers' roles and responsibilities will now be realigned in keeping with Community Living BC's philosophy and commitment to create options that promote and maximize choice, flexibility and service responsiveness, and support an individualized, person-centered planning approach for individuals with I/DD and their families. The following guiding principles support Community Living BC's mission and objectives¹⁶:

• Safety, security and well-being of individuals and families are paramount
• Community is the vehicle for change
• Individuals and families are the decision-makers
• All relationships are founded in mutual respect and trust
• Sustainable supports are developed by introducing flexibility, increasing choice and stimulating innovation and creativity
• The focus in on planning to prevent crisis
• Access to flexible and responsive supports is seamless and straightforward
• The standards of financial performance are consistent with government's financial security and reporting requirements

 

This is an exciting time for HSCL nurses and other community partners. Nurses look forward to working collaboratively with the new authority as it implements its revised service philosophy and framework. British Columbians will look to Community Living BC as it provides guidance and leadership into the next promising decades of community living service in BC.

Shortage of Physicians

In a paper prepared by the Canadian Labour and Business Center, a range of trends, factors and issues that influence the future of the medical profession are identified, and a range of trends, factors and issues that influence the future of the medical profession are identified, and a growing shortfall of various kinds of physicians and a critical shortage of family doctors and general practitioners in Canada are reported¹⁷. This Reduces Canadian's ability to access medical care when they need it. In particular, individuals with I/DD are vulnerable because a number of physicians already seem unwilling to assume responsibility for the care of persons with multiple disabilities for various reasons. Physicians are poorly prepared to deal with the health care needs of persons with I/DD¹⁸. HSCL nurses ' efforts are invaluable in assisting physicians do their work, and establishing positive rapport with individuals' general practitioners is integral to the ongoing successful management of health issues.

Aging and Chronic Illness

The effects of aging in individuals with I/DD are straining health and social services and resources in BC. The ability to provide the necessary services is limited as a result of reduced funding in recent years and the increasing demands of an aging population. Long Term Care (LTC) eligibility policies are outdated and make it difficult for individuals with I/DD to access the services, unless individuals require extended care. MOH and MCFD officials often disagree on whose primary responsibility it is to fund services for aging adults with I/DD. Community living service providers with limited resources to support aging individuals with I/DD disapprove of individuals' placements in long-term care facilities (i.e., nursing homes). Generally speaking, they see these environments as unacceptable for individuals who were just deinstitutionalized in the past twenty-five years. Day programs that serve the elderly in the general population have long waiting lists and are not always suitable to support individuals with I/DD, especially those with mental illness and/or behavioral disturbances.

The community support and health needs of individuals with dementia and other chronic progressive illnesses are varied and complex. The implications are far reaching in the community, as supported in the literature¹⁹, and they affect the provision of care in the following ways: 1) UCP knowledge and skill competencies increase; 2) UCP staffing requirements increase; 3) UCP education requirements increase; 4) community programs' operating costs escalate; 5) caregiver burden may result in increased rates of absenteeism and staff turnover; 6) general expectations for other residents may be reduced; 7) daily routines may be disrupted; and 8) costly medical equipment/supplies, and home renovations may be needed.

HSCL nurses are very concerned about the present and future care of aging adults with I/DD. British Columbia community living services lack sufficient means and resources to adequately support the needs of aging persons with I/DD at this time. Financial considerations seem to be the greatest barrier. Nurses need to be creative and resourceful in supporting aging persons with I/DD, their aging parents and caregivers. It is hoped that Community Living BC and HSCL will work well together to identify key issues and tangible solutions that will ensure a brighter future for aging persons with I/DD.

Professional Support to HSCL Nurses

HSCL nurses may feel as if they are all alone at times! In comparison to BC's other community health nurses, HSCL nurses form a rather small group and are scattered across the province. Unfortunately, there has been a consistent lack of clinical, educational and professional support to HSCL nurses in BC. Nurses in remote parts of BC are especially prone to the lack of opportunities for professional growth and development and networking, and they report feeling isolated. Efforts to continually update a master provincial membership list are more or less successful to help maintain communication and important connections. An annual provincial conference that once provided opportunities for professional support and networking has been discontinued due to lack of necessary funding to support such expenses. This has significantly reduced nurses' ability to share in the rich and diverse experiences that continue to shape their learning. Nurses do reach out to each other as necessary to consult about various clinical practice issues, and they support one another as well as they can, despite the long distances between them.

MOH initially retained four centrally located FTEs, one each in nursing and rehabilitation and two in medicine, to guide and support province-wide program operations and policy. In 2002, regionalization and the restructuring of programs within government eliminated these consultant positions. Medical consultation is now provided by one physician under contract to the five health authorities, but nurses have no professional clinical support other than to rely on each other. Medical consultation to HSCL nurses is limited, as there is high demand for services in the community sector, where support with a range of issues including health care consent, ethical decision making, health care access and medical advocacy is required, to assist social workers and service providers in areas where HSCL nurses are less accessible. The need for province-wide available clinical nursing consultation and support to HSCL nurses should be addressed. The needs for long-term planning, participatory action and leadership in setting HSCL program policy and facilitating the continuous growth and development of the HSCL program are also real.

There are no professional nursing organizations to support nurses who specialize in I/DD nursing practice in Canada. Therefore, HSCL nurses rely heavily on each other and their colleagues south of the Canadian border to meet their professional development needs. Some nurses have joined the Developmental Disabilities Nurses Association (DDNA) in the United States of America (USA). Membership provides exposure to the professional, educational and clinical issues that affect I/DD nursing and nurses. DDNA, established in 1992, has standards for I/DD nursing practice and a specialty certification, which some Canadian nurses are obtaining. More recently, some HSCL nurses have taken advantage of a collaborative effort between DDNA and HealthSoft, Inc., which has launched an interactive, Web-delivered courseware in Developmental Disabilities Nursing. Response to the educational courseware has been extremely favorable. There is a well documented lack of research-based literature for I/DD nurses²⁰, and this also impacts BC's nurses' ability to provide nursing services that are compatible with evidence-based practice.

Province-wide basic core training programs and resources are lacking to support newly recruited HSCL program staff and this jeopardizes the quality, consistency and reliability of program services throughout BC. Nurses with no previous experience in the care of individuals with I/DD frequently receive training "on the job" with very little or any reliable educational support and mentoring. Unlike their counterparts in other Home Health services, HSCL nurses enjoy fewer opportunities in continuing education, professional development and clinical support.

The HSCL program is small in comparison to others in Home Health. It receives less attention from busy managers and administrators . Fortunately, several nurses and therapists have formed their own regional clinical practice councils to create a forum where issues that relate to I/DD nursing and HSCL program operations can be addressed jointly with other health care providers and program managers. Councils have served as stepping stones to upper management, facilitating the resolution of some important issues impacting service delivery across the regions. A significant investment of resources and funding is necessary to facilitate strategic planning and strengthening of HSCL program development activities, in order to ensure a future that is rich with promise for its dedicated health professionals.

THE NATURE OF I/ DD NURSING IN BC - THOUGHTS FOR THE FUTURE

Prior to 1993, BC's nurses with an interest in I/DD nursing worked primarily in large institutions. The HSCL program brought opportunities for community health nurses to assume new roles and responsibilities in relatively new environments outside the walls of institutions. It provided the road map to new partnerships with community-based agencies and organizations supporting individuals with I/DD. Gradually, HSCL nurses have responded to the challenges by establishing their credibility, reliability and professionalism in the delivery of safe, effective, reliable, ethically sound and culturally sensitive care to some of the most vulnerable members of our society. Over time and with experience, HSCL nurses' multifaceted roles have been shaped and defined more clearly.

As consultants, these community health nurses are an important health resource to individuals, families, caregivers and service providers. HSCL nurses frequently serve as a primary entry point into the health care system and they assist others in navigating a complex maze of health services. As case managers, they promote the smooth delivery, coordination and evaluation of health care services. As educators, nurses facilitate the dissemination of information and education to individuals, families, service planners and care providers. As facilitators, nurses provide guidance and leadership in the health care planning process, promoting collaboration between members of the community support team and facilitating joint problem solving. As advocates, they encourage individuals with I/DD to participate in informed health care decisions and they promote conditions that support individuals' rights to safe and accessible health care.

HSCL nurses also have an opportunity to influence health and social policy at various levels. They can promote public awareness and understanding of the various health and socio-political issues that impact the lives of individuals with I/DD. HSCL nurses have the ability to influence the perceptions, attitudes and participation of other health care professionals in order to shape a more effective and responsive service delivery on behalf of individuals with I/DD.

As Leonard explains, community partnerships develop through a process of empowerment that is enabled by community health nurses as they transform thinking through dialogue and help in reconstructing a healing environment for all²¹. Community health action that leads to healthy communities is possible when nurses and community partners engage in meaningful dialogue to develop mutual trust and respect and work together towards their common goals and objectives. In building strong and lasting partnerships in community, HSCL nurses can foster the empowerment of individuals and communities.

The practice of I/DD nursing is both immensely demanding and gratifying. It calls for courage and stamina, maturity and sensitivity, creativity and resourcefulness, and great compassion and caring. In an era marked by unprecedented change in health and social policy governing the delivery of services to individuals with I/DD all over the world, BC's HSCL nurses are actualizing the true sense and meaning of I/DD nursing practice step by step. The future of I/DD nursing in BC depends on the nurses. The HSCL program has shown steady and significant growth in the past 12 years, and it is evolving in response to individuals and communities in need, albeit its many challenges. BC's HSCL nurses have built a solid reputation for their self-determination, tenacity and resourcefulness, and their deep commitment to improving the lives of individuals with I/DD is truly inspiring.

But improvements are needed to promote the overall efficiency and effectiveness of HSCL. In particular, HSCL program development and evaluation activities need to be revived. Tools and resources are needed to continually improve the quality and availability of services and to evaluate the appropriateness and effectiveness of services. HSCL nurses must become better educated to contribute more fully to I/DD nursing practice. They must value lifelong learning and seek out information from various sources. Canada may lack some of the necessary professional resources for HSCL nurses, but a number of world-wide organizations that support the health and social needs of individuals with I/DD are showing tremendous willingness to share their knowledge and expertise. In Canada, nurses can do a number of things to continue their learning and professional development. They can join American nursing organizations such as DDNA or they can access the International Journal of Nursing in Intellectual and Developmental Disabilities (IJNIDD). They can obtain access to HealthSoft's Web-based courseware in I/DD nursing, organize journal clubs, subscribe to various newsletters, form clinical practice interest groups, share important resources and examine case studies. As Broda explains, Canadian university schools of nursing must also incorporate into curricula greater content that reflects the complex health and social needs of individuals with I/DD²².

Although the significant contributions of HSCL nurses are recognized and valued in BC's health authorities, additional resources are necessary to support the continuing evolution of HSCL, as program vision, philosophy, goals and objectives are realigned within the context of Community Living BC and the new world view on responsive community living service delivery to individuals with I/DD. Canadian I/DD nurses must prepare adequately and proactively, as the future of I/DD nursing gains momentum in the USA and other countries, and as nurses compete for excellence in this relatively new market. Nurses in BC must continue to lobby for increased funding and resources to enhance existing community supports to aging individuals who are experiencing increased health and social needs. They must continue to nurture partnerships that allow entire communities to come together and advocate for better health and social conditions for persons with I/DD. More importantly than ever, nurses must take advantage of the sophisticated technology to reach out to other I/DD nurses and organizations around the world to share in their experiences and learn from each other.

SUMMARY AND CONCLUSION

This article recounted BC's history of the I/DD service sector and the evolution of the HSCL program, a thriving province-wide initiative that targets the delivery of community-based nursing and rehabilitation services to adults with I/DD. The unique roles of HSCL nurses were examined. Important trends, issues and challenges that impact service delivery were discussed.

BC's HSCL program is relatively young in comparison to other well-established Home Health services. I/DD nursing is developing as a specialized area of nursing practice in North America , not yet formally recognized in Canada, but the limited experience has taught us valuable lessons. The continuing evolution and success of the HSCL program is highly dependent upon the strength of partnerships with communities. Nurses rely upon individuals with I/DD, their families and care providers to teach them, guide them and inspire them as they learn the art and science of I/DD nursing. In their numerous personal encounters with individuals with I/DD, nurses acquire important knowledge and refine their skills to build capacity for more effective and meaningful nursing practice.

HSCL nurses have learned that besides strong community partnerships, they require a clear vision and action plan, coordinated planning, great commitment, collaboration and team effort, and a lot of hard work to achieve service goals and objectives. In sharing the richness of their experiences with colleagues and the general public, nurses promote awareness and understanding, paving the way towards the discovery of new and innovative ways to support individuals with I/DD.

People who were once segregated and confined behind institutional walls are now enjoying life experiences beyond expectations²³. Although BC is the first province in Canada to have closed all of its large institutions for persons with I/DD, nurses know that there are no guarantees for future generations. Institutions remain open in other provinces and invisible walls continue to isolate people in their communities²⁴. We cannot afford to grow complacent and must continue the work of others before us in order to create an inclusive and caring society that values diversity and accepts all differences in persons' abilities and disabilities.

HSCL nurses play an integral role in the community support of individuals with I/DD and they know that they have made a real difference in the lives of adults with I/DD in BC. They will continue to advocate for social conditions that promote better quality of life and health for persons with I/DD. And in doing so, they will continue to advance the cause of justice for all persons with disabilities all over the world.