John discussed the issues that families consider when they are making the very important decisions necessary as they consider the life of their son or daughter after they are gone. Having financial security through a protected trust, or having a RDSP which will allow for extra funding to meet disability and lifestyle related costs will have a tremendous impact on the quality of life of an adult with an intellectual disability when the parent is no longer available to provide for needs not met by the system. The pre election campaign of Disability Matters Vote:2016 raised awareness of the situation of adults who live their lives on the provincial Employment and Income Assistance program, an income well below the poverty line. Any parent who is able to make this provision for their son or daughter will want to do so, with someone appointed who understands their wishes, and the needs of their son or daughter, so that the funds are used in the best possible way.
Suzanne described the process involved in establishing an RDSP, which can be done at any financial institution. Contributions can be made by the individual, a family member or friend – anyone who is authorized by the holder of the plan. The fact is that for most individuals with an intellectual disability, some help will be required in learning about the RDSP, how to apply and how to contribute. Families or agency staff are most often the helpers who work with individuals in applying for the disability tax credit and then opening an RDSP.
The critical ingredient for sound future planning – whether it be preparing the right will or estate plan, or opening an RDSP, is having a support network around a vulnerable individual. It takes a support network of family and friends to help aging parents plan for the future of their son or daughter, and then to be the same friends and family who become the network around that vulnerable individual as they move forward after the loss of parents. It takes a support network of friends and family to assist an individual to plan for a future that includes all the hopes and dreams of a unique individual who will one day live in a community which does not include his parents. This support network may be involved in looking at different housing options, ways of ensuring that finances are managed appropriately, that personal choices are respected, that employment and community engagement options are explored, and that personal support and safety needs are met.
The assumption that was made as John and Suzanne talked about the future planning options was that there would be family and friends in place when parents are no longer available to sons and daughters with intellectual disabilities. These family members and friends must be engaged with and knowledgeable about the individual so that they can make decisions which are in keeping with the wishes of parents, but also support the choices and decisions of the person with a disability. This engagement and knowledge can’t begin when parents are gone, but needs to be established before. Parents need to be thinking about ensuring that their sons and daughters have the long lasting relationships and support networks around them before they pass away, to ensure the smooth transition that estate planning requires. This support network is critical to the emotional wellbeing of an individual who has developed dependency on a parent, and faces their loss.
Another aspect of future planning for families will be to look at developing the necessary support networks around their children so that the supports, protection and relationships which they want to see included in their lives are also prepared. Community Living Brandon will look at bringing a workshop on this topic to families in the fall.