The critical role of personal support networks for our loved ones living with disability
Reprinted from the "Supporting Adult Children" issue of Visions Journal, 2019, 15 (1), pp. 40-42
For the past 30 years, Planned Lifetime Advocacy Network (PLAN) has worked with people with disabilities and their families to help them create fulfilling lives in their communities. Founded in 1989, this family-led non-profit organization has helped to bring families together for mutual support, learning and community leadership.
As every family knows, planning with people who have disabilities takes effort and intention. From planning for the future to school transitions, community involvement, financial objectives and more, very little happens without a network of caring relationships. For this reason, fostering relationships is the foundation of all the work that PLAN is involved in. PLAN supports people with disabilities to build personal networks of unpaid, caring relationships, ensuring that there is a continuity of care even after parents have passed on or are no longer able to be as involved as they once were.
PLANning for a good life
For all of us, the feeling of being connected to others gives our life meaning and offers us the opportunity to experience joy and fulfillment. Meaningful connection with others also provides space for sharing life's passions, challenges and triumphs. Caring relationships are what fosters love and a sense of belonging; they also provide us with the support and assistance we need to make and implement life goals and plans.
PLAN's personal support networks are small groups of family members and friends who work together to establish these opportunities to benefit loved ones living with a disability, providing natural care and support to individuals who might otherwise experience isolation. These networks are the foundation for a loved one's good life in the present, and the best guarantee of their safety and security in the future.
The work that PLAN does in collaboration with networks of families and friends to address the challenge of providing long-term care begins by asking the question "What is a good life?"
Exploring the answer to this question unifies parents, caregivers and facilitators alike. It opens hearts, minds and imaginations, regardless of circumstance, age, beliefs or life experience. Discussions about a good life get to the core of every family's hopes, dreams, worries and fears for their relative with a disability. The question invites us to think beyond reliance on professional services and challenges us to reflect on the most important elements of our existence. What do we have to put in place to ensure that our loved one has a good life?
To PLAN, a good life means that each person
knows the loving support of nearby family and friends
contributes to, and actively participates in, a caring and inclusive community
is respected and empowered to make choices
lives in a place they call home
enjoys a meaningful and financially secure life
has a well-planned future, providing them and their family with peace of mind
Every PLAN is unique
One of the core beliefs at PLAN is that every person has a unique contribution to make to the community, and the significance of that contribution is magnified when it is recognized. PLAN values each individual's unique strengths and knows that, with the support of friends, family and other members of their personal support network, a person living with disability can find opportunities to work, volunteer, create, inspire and contribute in ways that celebrate their unique qualities. Identifying an individual's gifts and determining how they can contribute leads to the growth of meaningful relationships—the foundation for a good life.
A good life also includes personal choice. PLAN believes in nurturing and honouring an individual's inherent decision-making abilities rather than encouraging someone else to make decisions about the person’s life. Honouring personal choice means taking the time to learn and recognize each person's tastes, preferences and values. It also means acknowledging their ability to discriminate—to select and choose wisely for themselves and their life.
Personal choice includes finding a true home—a home where one chooses to be. PLAN defines "home" as a place that provides continuity and security, a place that ensures privacy and reflects the personalities of those who live there. Creating a true home for a person living with disability means making sure their personal choices are reflected in their home environment, everything from the décor of their living space to whom they live with and how they plan their daily life.
There are many options today for families and personal support networks that are helping to establish a home for a loved one living with disability. In addition to home ownership and the traditional group home model, there are housing cooperatives and land trusts, which have advantages similar to those of home ownership. Home sharing offers the option of living with a loving family, and various rental alternatives can provide flexibility and an opportunity to experience different living arrangements, which can be particularly valuable if an individual is living on their own for the first time.
Finally, PLAN acknowledges the important role that financial security plays in our well-being. Financial security allows us to plan with confidence for a future in which we can live comfortably—but also in which we can manage emergencies and other unforeseen events. We need to save money, but we also want to be able to enjoy ourselves in the present.
Many people with disabilities live on low incomes and have limited assets. PLAN encourages using a mix of financial options to help secure the future financial security of our loved ones. This typically includes ensuring that all provincial and federally available government benefits are being accessed to receive direct financial support, and help with medical, dental, optical and pharmaceutical costs, as well as help with other costs directly related to disability. People who have disabilities can also set up a Registered Disability Savings Plan (RDSP). The RDSP is a long-term savings plan to help Canadians with disabilities and their families save for the future. Many people with an RDSP are also eligible for substantial grants and bonds to increase the value of long-term savings. Building financial security also involves will and estate planning and discretionary trusts.
PLANning for the future
For the first time in history, there are now more seniors than young people living in Canada. According to the latest census data released by Statistics Canada, people aged 65 and older now make up 16.9% of Canada's population. People under 15 years old account for 16.6%.1
These statistics have a big impact on the future of PLAN. Currently, the median age of lifetime members of PLAN is 51, although there are some members as old as 90 who are still acting as primary caregivers for their adult children. As our medical and health care systems improve, and as our communities become more inclusive, people with disabilities—those with physical or developmental disabilities as well as those with mental health and substances use issues—are living longer and healthier lives. This means that people who need full-time or significant care are more and more likely to outlive their parents, who are most often their primary caregivers as well as the ones to grow, foster and maintain the support networks with PLAN.
These realities pose challenges for PLAN and for personal support networks everywhere. But they also suggest an opportunity for change. We have the chance to mobilize our personal support networks to create strong succession plans that ensure that the important and specific roles that parents play in the lives of our adult children can be taken up by alternative caregivers.
To learn more about PLAN, or to access information on personal support networks, health care and community advocacy, and legal and financial planning for families and individuals living with disability, please visit www.plan.ca. For information about the RDSP and upcoming wills, trusts and estates workshops, please visit www.planinstitute.ca.
About the author
Rebecca is the Executive Director of PLAN, a Vancouver-based social enterprise that partners with people and families facing social isolation. She regularly consults with organizations about how PLAN's network-building approach can be applied to other population groups. Rebecca lives in Vancouver's Gastown, a neighbourhood known for its immense diversity
- Statistics Canada. (2017). Age and sex and type of dwelling data: Key results from the 2016 Census. www150.statcan.gc.ca/n1/daily-quotidien/170503/dq170503a-eng.htm.