Practical Preparations for the Aging Caregiver
By Adelle Purdham
Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #15: Aging with Down Syndrome). Click here to download the full magazine.
We all require varying levels of support throughout our lives, and this is especially true for individuals with Down syndrome. Eventually for all of us, the question becomes: who will look after your loved one once you’re no longer able to?
There are all kinds of other questions hidden within that one. Where will they live? What if they don’t have family willing or able to step in as caregivers? What decisions need to be made early on and what steps can parents and guardians take to both protect their loved one and ensure the continuation of a meaningful and fulfilling life? How do we set our child up on a trajectory that will lead to an enriched future built on community and the sense of love and belonging that every person deserves?
A Supportive Community
Preparations can begin as early as prenatally or as late as today. A great first step is to build connections and foster existing relationships.
Most people with Down syndrome require a caregiver, which mom and support group facilitator Wendy Newbery describes as “someone who holds important pieces either in a direct way (personal care, homemaking, coordination, and planning), or in a facilitative way (double checking money management, keeping a watchful eye on healthy living skills, being responsible when something tanks), or both.” But a caregiver doesn’t have to be only one person or a couple; having others who support the primary caregiver is hugely beneficial. This is where the notion of Support Circles comes in.
Circles of Support are a way of conceptualizing an individual’s support network. They are comprised of a dedicated group of individuals who care for and are present in the life of a vulnerable individual. Based on a person-first approach that centers on the individual’s talents, gifts, dreams and circumstances, members of the Circle foster meaningful community participation.
Circles of Support are not a one-and-done exercise; they must be nurtured and maintained over time. Members often spend time with the individual doing mutually enjoyable activities, such as going to the movies, taking a walk, or grabbing a coffee. (For more detailed information and resources to create your own Circle of Support visit inclusion.com and plan.ca.)
Legal and Financial Considerations
From a legal and financial perspective as a caregiver, three essential pieces should be considered: creating a will, buying a life insurance policy, and opening a Registered Disability Savings Plan (RDSP).
The ideal time to get a will is “as soon as you have children, especially if you’re a single parent,” says Shannon McCrae, an independent financial advisor who specializes in estate planning for families who have a family member with special needs. “You don’t want someone else taking that decision from you when you’re not around.” Some families purchase a Life Insurance Policy which will pay an amount to their child when the parent(s) dies to provide financial resources for ongoing care.
Shannon suggests being overprepared and keeping your will current following any major life changes. Additionally, she recommends setting up a trust to protect assets that may eventually go to your loved one to ensure their inheritance will not impact receiving funding, government or otherwise, that they will depend on. “And not just any trust,” she says. “The right trust.” For example, an Absolute Discretionary Trust, sometimes referred to as a Henson Trust. Shannon urges families to review their provincial and territorial regulations and to hire a lawyer who specializes in assisting families who have children with disabilities with their estate planning.
Being prepared also involves choosing Powers of Attorney for Personal Care (health) and for Property (financial matters), for you and for a child once they reach the age of majority, either 18 or 19 years of age depending on where you live. If a child over the age of majority is able to provide their input, and meets capacity requirements for signing legal documents, they should be supported to do so.
“We’re more likely to be medically incapable before we die,” says mom, author, and disability advocate Lucinda Hage, whose adult son Paul has a developmental disability. Paul accompanied her to meet with a lawyer and offered his consent in response to the family members that were chosen as his Powers of Attorney that will cover his property and personal care. In this way, Paul is being given agency over the decisions that impact his own future, and having a say means he’s more likely to be happy with those choices when the time comes.
A Registered Disability Savings Plan (RDSP) is another consideration. Amongst saving tools, an RDSP is an excellent tool where one receives federal grant amounts on setup at a financial institution. Shannon emphasized that while opening a RDSP may be the easiest to do, a will and purchasing life insurance are the most important. Shannon also points out that leaving things until the last minute “is going to cost you more in the end.”
Housing and living arrangements are another big consideration. Several housing models exist, depending on where you live, including: moving to a government subsidized community group home, a domiciliary hostel, a pay out-of-your-pocket community group home living arrangement, a shared accommodation with one or more roommates, or moving in with a new family member or caregiver; ‘homeshare’, where a family or couple is paid to accommodate the individual with Down syndrome in their home and assist with their shopping, cooking, and other daily activities (e.g. travel to employment, programs, Special Olympics). Based on experience, Lucinda Hage cautions against shared living with only one other person in case the arrangement doesn’t work out.
Mary Lynn Cassels, mom to 41-year-old Scott, had her son go through a similar experience with independent living. Mary Lynn is now embarking on a model with one other parent called ‘Reverse Home Share,’ whereby a caregiver, or caregiving couple, will pay part of the rent in the house or apartment that her son Scott co-rents and lives in with a friend. Scott has built a life in his small town, and this forward planning will allow for the continuity of his job, social life, and his place in a community that celebrates him, and that he knows how to navigate. Lucinda is planning to adopt a similar model and has purchased a home that is 99% in her son Paul’s name, under trust.
How to pay for housing? No direct funding for housing currently exists, but in some provinces, funding may be available to assist with the cost of housing through Community Living and requests to the Ministry of Social Services. Costs related to supporting daily independent living, however, may be offset by funding through your local or regional agencies.
Suzanne Zwara, single parent to 27-year-old Brenden, urges other parents to submit housing plans to their respective Ministry of Social Services to show the government there is a need. Without a plan in place or family to intervene, individuals with Down syndrome are often placed in a government subsidized group home scenarios. According to Suzanne, the yearly cost to maintain a young adult in a group home is six times more expensive than the roommate housing model she priced out for her son.
Brenden is an only child. With the support of an independent facilitator, Suzanne set up a ‘microboard’ that will ensure Brenden’s caretaking and housing needs are looked after. Microboards are formalized Circles of Support comprised of a small group of family and friends (a minimum of five) who join with a person with a disability to create a non-profit organization. The legal fees associated with setting up Brenden’s microboard totaled about $2,000.
Brenden has fourteen people on his microboard. These are people “who are in the picture,” says Susan, and who keep in regular contact with Brenden in his daily life – people with whom Brenden has a meaningful relationship. Members include friends, cousins, and past school friends, as well as professionals. Each person has a self-appointed role on the board to make sure all of Brenden’s needs are met, including his living situation, social activities, recreation, and holidays. For more information about microboards, see: Planning Network, Here to Help, Microboards Ontario.
“We do a disservice to our loved ones with disabilities by always being there for them,” says Wendy Newbery. “We need to practice being apart so that we can all enjoy our lives and so that when we die, our kids know that their care needs can be met by others.”
Investing time in social interactions and building relationships with others will help make the individual’s transition to an eventual new living situation smoother. Debbie Boycott, mom to 39-year-old Emily, plans to set up rotating weekends away for Emily to stay with other families in her friend circle. Each family will take a turn, allowing the other families respite while the adults with Down syndrome benefit from coping with new situations and being away from home—without family. Inclusive summer camps and respite care, accessed through Community Living, are also great options to foster independence and adaptability.
Find Your Village
You are not alone in preparing for your child’s future, but you do have to put in the work. “The onus is on the caregiver,” says Lucinda Hage.
Consider joining or forming a support group for parents and caregivers to adults with developmental disabilities in your area. Retired Independent Facilitator Wendy Newbery, who is also a parent to thirty-year-old Evie who has Down syndrome, helps facilitate one such group in the Waterloo Region (ON) called A New Chapter. She is part of a team of seven parents who coordinate monthly meetings, with topics such as grief, self-care, planning for the future, building networks of support, Individualized Funding, and local recreation resources. Each meeting covers a topic related to supporting the caregivers or learning about ways to support their loved ones with disabilities. “The work of a caregiver is all encompassing,” Wendy says. “Meeting with others who love and provide care for their loved one with disabilities is normalizing and reassuring.”
While the task of planning ahead can feel overwhelming, there are comprehensive resources that can help. Families can find out more about building networks by connecting with Planned Lifetime Advocacy Network. You can also find free online webcasts, action guides, networks, federal and provincial supports, and a wealth of knowledge at the P4P Planning Network. Every resource is designed specifically for the relative, friend or caregiver of a person with a disability. We recommend the popular book Safe and Secure: Seven Steps on the Path to a Good Life for People with Disabilities by Al Etmanski. Additionally, reach out to Community Living and your regional Developmental Service program, which may offer workshops and housing navigator sessions that teach parents how they can make shared living arrangements happen.
But what happens… after?
Following the death of her mother, fifty-six-year-old Ruth Marin moved from Mexico to Canada to live with her younger sister Laura and family. At the time, Ruth appeared older than her fifty-one years. She was overweight with rashes on her skin and disheveled gray hair she refused to style. Though Ruth demonstrated athleticism and artistic talent from an early age, as her parents’ health declined, they were no longer able to get her out of the house for activities, and Ruth’s life became sedentary.
Moving in with her younger sister gave Ruth a lifestyle makeover. They are an active family that get out for regular dog walks and plays in the park. “Being active,” Laura says, “got Ruth into a different mindset, and she has flourished.”
Ruth spends three days a week at a day program through Community Living. Laura’s husband is an architect, and Ruth enjoys copying her brother-in-law’s house drawings. Ruth also paints and has her own dedicated space in the home for her art projects. One of her paintings—a peacock—recently won a provincial art contest for World Down Syndrome Day. Ruth enjoys girls’ nights with her nieces, which they call Convivio. This weekly date is their chance to eat a few treats, watch a movie and laugh together.
As a new caregiver, Laura has found real community and support through her local and provincial Down syndrome associations. She says that Ruth has enriched the life of every member of her family: “She’s my angel.”
The Heart of the Matter
While practical tips are important, the essential component of this entire process is the human being at the heart of these decisions. What are the wishes of the person with Down syndrome themselves? This question needs to be at the core of planning any version of their future, and they should be actively involved in that process. Discuss plans and have conversations early on to alleviate stress and guide expectations for the future.
In speaking with Emily Boycott, she is direct about not wanting to think about a future without her parents—nobody does. Yet she is also clearheaded about where she might live and who will care for her when the time comes. Emily’s four siblings have each expressed a desire for Emily to continue to be a part of their lives and homes, and Emily knows she will likely go live with her oldest sister nearby. But what is most important to her with regards to the future? Her relationships and connections to others.
“I like being with people,” Emily says. “As long as I’m with company, nothing else matters.”
Adelle Purdham can be found at www.adellepurdham.ca.