Managing Continuity of Care for Children with Special Needs in rural and Remote Parts of Northern Ontario

Key Implications for Decision Makers

Rural residents place a premium on being able to access care in or near their home communities. As long as they can have professionally guided care, the benefits of staying home outweigh the possible advantages of direct professional therapy, if the latter is only available in a city.

A viable system of care is created when the same team of health professionals travels to rural communities on a regular basis to develop care plans that are then implemented either by unpaid mediators or paid paraprofessionals who are local residents.

While both the mediator and paraprofessional approaches work, paraprofessional caregivers are preferred by clients because they deliver services in a constant and consistent manner. Moreover, their therapeutic work is monitored by regulated health professionals.

Maintaining the better approach - using paraprofessionals - requires a sustained investment by government. It is difficult to attract individuals who are qualified unless full-time, long-term contracts can be offered.

Continuity of care is influenced by the model of service delivery, certainly, but also by staff turnover, referral routes, waiting lists, and the motivation of clients.

Delivery models based on integration of interdisciplinary teams that cross agency and sector boundaries foster continuity of care.

Executive Summary

Achieving continuity in managing the healthcare of rural residents in northern Ontario is made difficult by two facts - the distance between communities and the scarcity of health professionals. A provincial initiative, designed to meet the special health, mental health, and learning needs of rural children in the region has tried alternate ways to overcome these barriers and ensure that clients have access to services in or near their home communities. Interdisciplinary teams of health professionals, employed by the Integrated Services for Northern Children program, travel to rural communities as consultants to assess and develop care plans that can be implemented by non-professionals who reside locally. The latter fall into two categories: "mediators" (such as education assistants or parents) who work with a specific child on a volunteer basis; or "intervention workers," paid paraprofessionals specially prepared to work with children that have specific needs; they normally have several clients on their caseloads.

Managers for the program in the Thunder Bay District, in partnership with researchers at the Centre for Rural and Northern Health Research and The Centre of Excellence for Children and Adolescents with Special Needs, compared the continuity in the process of care achieved using each method. Data were collected through (a) reviewing a random sample of 327 client charts; and (b) a series of semi-structured in-person interviews with 100 individuals, both clients and providers, involved with the program. Six questions were posed.

To what extent do clients remain in contact with Integrated Services for Northern Children program services? Although people accepted professionally guided care by mediators because it was delivered locally, they much preferred the intervention model because the workers were able to maintain a consistent routine, often seeing their clients twice a week. Consequently they could react more quickly to changes in children's needs and regularly seek advice from the professional members of the team. In mediation cases contact is maintained but not as frequently; the professional resource team usually visits once every six weeks.

To what extent are there breaks in the delivery of services? Some 45.6 percent of clients' charts record a substantial time gap in services, but this statistic must be interpreted cautiously. The intervals may be warranted by a child's clinical status, or due to client's non-attendance. However, interruptions also occur because professional or paraprofessional staff leave, creating delays until replacements are found. Difficulty recruiting bilingual speech/language and mental health workers has caused significant breaks in the services available to some francophone children.

To what extent is there continuous contact with the same care providers? Client files show that most children have the same caregivers for extended periods. In mental health cases changes may occur as clients explore therapeutic options. Most changes are associated with staff turnover, however. In the case of professionals leaving, these disrupt the mentoring/monitoring relationship with paraprofessionals.

To what extent are plans of care implemented? Client charts show distinct differences, with mediators almost twice as likely not to implement care plan recommendations and to encounter barriers more often, perhaps because they are less able to navigate the health and education systems. Mediation plans are reviewed annually, while intervention plans are continuously updated. Interviewees noted that concern about overburdening parents limits the extent of mediation that can be expected, while parents engaged more actively when they had regular contact with an intervention worker.

To what extent is there co-ordination with primary care services? The focus was on family physicians. Smaller rural communities often lack adequate physician coverage; given their expected "gate keeper" role, this creates delays in the referral process to medical specialists. Because intervention workers are in constant contact with professional consultants, situations requiring medical attention are spotted and referrals made earlier than in mediation cases.

To what extent is there co-ordination with formal and informal caregivers? The program's dual approach involves both; all individuals concerned are included in case conferences, but information is also routinely exchanged between parents and case managers or intervention workers. These local workers were relied on as spokespeople for parents' concerns, especially at school.

The findings show that paraprofessionals can provide certain health services successfully and, where professional providers are limited, they extend the capacity of the health system's human resources. In the case of rural communities, the availability of local workers diminishes the need for residents to travel to access care. As long as they can have professionally guided care, the benefits of staying home outweigh the possible advantages of direct professional therapy, if the latter is only available in a city. The preferences for and strengths of the intervention model in terms of continuity are evident; this component of the program deserves ongoing funding from the province. Moreover, with modifications, the intervention worker model is likely transferable to other health and social service programs in rural areas.