Transition Planning – The Current Context

As noted in the forward to the Guide, the focus in the Guide is operational and practical, with one exception.

Nancy Jokinen, MSW, PhD, and Adjunct Professor, UNBC School of Social Work, was asked to provide an “academic” overview of the current context of transition, the importance of collaboration, and the need to both plan and execute. In addition to the abridged version in the forward of the Guide, here is the full version. The related recommended citations are included in the section Information Resources and Research section of the Guide.

Intro for Transitions Guide / Njokinen 16/12/19

This new updated transition guide is a timely resource that should service us well as our population continues to age. All people face inevitable transitions that are essentially changes that occur within life stages or because of major life events. With change, a level of insecurity occurs and requires the person and family to adjust or cope with the new circumstance ¹.

Older-aged adults frequently experience transitions – “in roles, relationships, activities, abilities, identifies, environment and living arrangements” ^{2, p.2056} including middle and older-aged adults with intellectual disabilities. Transitions are generally thought to be complex and occur over time in fundamentally three phases (e.g., pre, active and post transition) with multiple factors influencing the outcome ^2,3. Transitions may also be viewed as planned or demand situations. Planned transitions are proactive, preparing supports to be in place when needed, and generally thought to have positive outcomes despite any compromises needed to enact the plan. Demand transitions are reactive, may occur suddenly, and hurriedly entail trying to meet immediate needs. People in these situations often feel confined to what is available or arranged on short notice resulting in possible adverse outcomes ⁴. Family caregivers in the general population also find the pre and active phases of a transition to be crisis oriented given an absence of preplanning, the availability of information or support and frank discussions ³.

The context of family caregiving is diverse given individual attributes, culture, location and the necessity to consider these variables in supporting families ⁵. In supporting a person and their family there is a tendency to focus on the physical aspects of transitions such as where the person will live, who will help with what, and transportation needs. Yet, importantly, there are emotional, psychological and social needs to attend to during a transition ².

The literature often suggests older-aged families, particularly parents, of adults aging with intellectual disabilities are reluctant to plan for the future ⁶ yet many older-aged families may well have informal plans at various stages of development or just require someone (e.g., a trusted friend, staff, family physician) to raise the question and help start a planning process ⁷ . The demands and unique needs presented by overwhelming changes brought on by dementia experienced by adults with intellectual disabilities or their older-aged parents may also lead to conversations and planning transitions sooner than anticipated ⁴. The unique needs of these individuals and their families are well-recognized ⁸.

Older age will certainly require transition planning that takes a cooperative approach involving the person, family members, and various health and social service services. Enhanced policies, practices and research to better support adults aging with intellectual disabilities continues to be heralded ^{9, 10}. The care and support needed by an individual and family, particularly during a transition, does travel and shift between and across the people and services involved ¹¹. How the person’s plan is interpreted and enacted should carefully be conveyed. As one research participant stated “Having a plan. That’s the main thing. Planning is great. It’s not easy, but planning and doing it is two different things.” ^{6, p. 63}. Positive relations between all involved will instill confidence in the ability to meet needs and ease transitions³. This newly updated transition guide offers cross service sector knowledge and resources to better support individuals and families create and implement transition plans with positive outcomes.

Nancy Jokinen, MSW, PhD
Adjunct Professor, UNBC School of Social Work

¹ Golan, 1981, as cited in Ray, M., Bernard, M., & Phillips, J. (2009). Critical issues in social work with older people. London: Palgrave MacMillan. Ray, Bernard, & Phillips, 2009).

² Tanner, D., Glasby, J., & McIver, S. (2014). Understanding and improving older people’s experiences of service transitions: Implications for social work. The British Journal of Social Work, 45(7), 2056-2071. doi: 10.1093/bjsw/bcu095

³ Merla, C., Wickson-Griffiths, A., Kaasalainen, S., Dal Bello-Haas, V., Banfield, L., Hadjistavropoulos, T., & Di Sante, E. (2018). Perspective of family members of transitions to alternative levels of care in anglo-saxon countries. Current Gerontology and Geriatrics Research, 2018, 11. doi: 10.1155/2018/4892438

⁴ Jokinen, N. S., Janicki, M. P., Hogan, M., & Force, L. T. (2012). The middle years and beyond: Transitions and families of adults with Down syndrome. Journal of Developmental Disabilities, 18(2), 59-69

⁵ Dilworth-Anderson, P., Hilliard, T. S., Williams, S., & Palmer, M. H. (2011). A contextual conceptualization on transitions of care for older persons: Shaping the direction of care. Annual Review of Gerontology & Geriatrics, 31, 1-14.

⁶ Strnadová, I. (2019). Transitions in the lives of older adults with intellectual disabilities: “Having a sense of dignity and independence”. Journal of Policy and Practice in Intellectual Disabilities, 16(1), 58-66. doi:10.1111/jppi.12273

⁷ okinen, N. S. (2008). Family quality of life in the context of aging and intellectual disability (Unpublished doctoral thesis). University of Calgary Calgary, AB

⁸ Public Health Agency of Canada. (2019). A dementia strategy for Canada: Together we aspire. Ottawa, ON: Federal Ministry of Health.

⁹ Heller, T. (2019). Bridging aging and intellectual/developmental disabilities in research, policy, and practice. Journal of Policy and Practice in Intellectual Disabilities, 16(1), 53-57. doi: 10.1111/jppi.12263

¹⁰ Sullivan, W. F., Heng, J., Abells, D., Perry, A., & Henze, M. (2019). Supporting adults with intellectual and developmental disabilities to cope and thrive through transitions to later-life phases. Canadian Family Physician, 65(Suppl 1), S30-S32.

¹¹ Symonds-Brown, H., Ceci, C., Duggleby, W., & Purkis, M. E. (2019). Re-thinking the nature of day programs for people with dementia: Implications for research. Dementia, 0(0), 1-22. doi: 10.1177/1471301219884429