The Montreal Association for the Intellectually Handicapped (MAIH), the oldest association for the intellectually handicapped in Canada, is offering, 83 years after its creation, services for people living with an intellectual handicap, but also for their families, or more precisely, for “caregivers.”
The recognition and funding of community organizations are a significant issue in Quebec and elsewhere. In an ever-changing social and political context, community organizations must be creative regarding their strategies for the maintenance of their services. Community organizations dealing with people living with an intellectual handicap are no exception to the rule. Faced with a growing State disengagement regarding the services offered to people living with an intellectual handicap, paired with significant budget cuts, community organizations play a vital role in the maintenance of their services for these people. However, these organizations are subject to the harsh reality of often unstable funding, which does not allow them to maintain the quality of their services at its highest level. The sectors surrounding philanthropy are constantly challenged, and community organizations must continue to offer their services despite these harsh realities because if they disappear, individuals living with an intellectual handicap will thus no longer have any services at their disposal. A study recently published by Épisode presents the state of philanthropy in Quebec, in 2020. While the number of private donors decreases, the average donation stays the same and even increases in some instances. However, we note a significant change in donor behaviour according to different generations.
The Montreal Association for the Intellectually Handicapped (MAIH), on the other hand, has varied funding to diversify their sources of revenue. Financed in part by the Programme de Soutien aux Organismes Communautaires (PSOC) and by organizations such as the United Way, the funding is divided according to the programs offered by specific organizations or foundations. Program-based financing is also a concrete way to get funding for a particular project of the Association. Within their respite activities for caregivers, for example, MAIH is supported by the Fondation de la Fédération des Médecins Spécialistes du Québec(FFMSQ) who gave themselves the mission of helping the caregiver’s cause. MAIH holds private funding in high regard, being dependent on the support of many individual and corporate donors for their fundraising events. Despite a will to collaborate and the negative connotation of a “competition” in the community sector, organizations sometimes apply for the same grant requests, ask for financial support from the same companies, foundations, and approach the same global pool of donors. This is why it is essential to diversify one’s sources of funding as much as possible, by at the same time applying for public grants, but also private funding through innovative tactics and constant research.
A little history
It was in 1935 that the Montreal Association for the Intellectually Handicapped was born. Parents, mainly anglophones, having had children with an intellectual handicap, took the situation into their own hands, joining forces and creating schools that they financed themselves, helped by fundraising activities. It is under the name School for handicapped children that MAIH began offering services.
In the period between the two World Wars, people living with an intellectual handicap were marginalized within Quebec’s society. Placed under the care of religious communities as of childhood, in nurseries and orphanages, and placed in large institutions for the mentally ill, the majority of people having an intellectual handicap were isolated and did not benefit from any service or treatment adapted to their condition. Excluded from the regular education system, the only knowledge accessible to them was from the few religious communities who made the choice of offering re-education services within existing institutions. It was only in 1952 that a first anglophone school was established in Montreal. During this period, people living with an intellectual handicap escaped their place of confinement, psychiatric hospitals, and were re-oriented towards institutional resources, that are more appropriate and less restrictive. Some were able to rejoin their family or the community. During this time, the name of the organization is replaced by the Association de secours pour enfants arriérés inc., a name that speaks to the mentality of the time.
Little by little, the de-institutionalization process spread and attitudes evolved. As of the 1960s, a more significant place was given to people with an intellectual handicap. In this way, universities, within the psychology and social services departments, developed approaches to be able to evaluate the children, their adaptation to school, to placement as well as their family relations. Once again, the name of the organization is changed, this time to Association de Montréal pour les déficients mentaux.
1971 and 1972 mark a turning point concerning the perception and rights of people living with an intellectual handicap: both internationally and in Quebec. In 1971, The UN announced the Declaration on the Rights of Mentally Retarded Persons, and it is one year later that the law on healthcare and social services is implemented so that an actual public network of readaptation centers for people with an intellectual handicap can be created.
Supported by the will and work of parents of people living with an intellectual handicap, MAIH endows themselves with a family support service. The objectives are clear: supporting, intervening, providing information on existing resources, educating, monitoring, statistics, promoting, and training. It is in 1987 that the name Montreal Association for the Intellectually Handicapped is launched. It is around the 1980s and 1990s that groups of associations for the intellectually handicapped are formed. MAIH participates in the development of committees for the defense of their rights and consultation. They also take advantage of the situation to develop their activities, such ascamps, and trips, amongst others.
As of the early 2000s, MAIH continued to develop their services for people with an intellectual handicap. Nowadays, MAIH’s mission is to favor the social participation of adults living with an intellectual handicap. While their direct activities among adults living with an intellectual handicap are maintained and are evolving, MAIH begins to develop their family support division.
Throughout their existence, MAIH did not stop spreading awareness for the cause of the intellectually handicapped, while following the evolution of Quebec society. This constant work is never acquired and continues to this day. Nevertheless, a few precisions concerning the definition of intellectual handicaps are in order.
Demystifying intellectual handicaps
We could resort to the DSM-5, Diagnostic and Statistical Manual of Mental Disorders, of the American Psychiatry Association, when bringing up the subject, but there is no need to when trying to put some order in the preconceptions regarding intellectual handicaps.
Let us begin by differentiating intellectual handicaps from mental disorders. While it might be true that some people have a dual diagnosis, intellectual handicaps are not mental disorders! In fact, an intellectual handicap refers to the learning and processing information capacities while a mental disorder refers to the processes that affect thoughts and emotions. Also, an intellectual handicap refers to the IQ and to adaptive behaviors. On the other hand, mental disorders have nothing to do with IQ.
The vocabulary used is also critical as an intellectual handicap is not an illness. It is a permanent state that appears before adulthood. This being said, there is no cure and no medication, unlike with mental disorders. A person living with an intellectual handicap can, throughout their life, develop abilities and acquire autonomy. This does not negate the fact that intellectual handicaps will impact family support, and this, throughout their lives.
The permanence of intellectual handicaps is a prominent factor, be it concerning the reflection of which services to offer or to be offered or the processes that aim to spread awareness of this reality to the public at large.
The families at the heart of MAIH’s activities
How does the permanence of intellectual handicaps majorly impact caregivers?
As any other individual, a person with an intellectual handicap aspires to live an autonomous life. They want their own apartment. They want a job and a romantic relationship, etc. Despite these desires, the acquisition of skills necessary to live autonomously don’t necessarily follow this desire. At the age of 21, the legal framework throws these people towards total autonomy whereas these new adults don’t have all of the necessary tools to do so and a good many of them can not yet leave the family nest.
This reality is even more limiting when the spaces available in resources are numbered. Thus, a majority of families who are members of MAIH find themselves having to assume the custody of their child almost permanently. It isn’t rare to see members aged over 50 still living with their parents. Aging members, but also aging parents who, for some, are over 80 years old. Throughout their lives, they were responsible for the care of their child. It is thus families who are tired, both morally and financially exhausted, who seek out respite or support to best exercise their parenting.
It isn’t rare to find couples who have a child with an intellectual handicap, where one parent sacrifices their career to take care of the child. Families find themselves overwhelmed, with the number of single-parent families issuing from these situations as proof.
Through their family support division, MAIH supports caregivers by offering activities that directly address the issues they are dealing with. Conferences, training and references, families are able to express themselves on their situation, and the staff of the Association tries to respond. This division is actually in the midst of being developed. It aims to offer caregivers the support and tools they need.
It is also through their Learning to be Autonomous division, aimed at members living with an intellectual handicap whose families seek support through respite, notably with vacation getaways.
Each summer, MAIH offers their members the possibility of leaving for a week-long summer camp outside of Montreal. It is a very popular program among caregivers who seek affordable respite opportunities. For some families, it will be the only week of the year that they will be away from their children. This precious moment will allow them to recharge their batteries and better confront their daily responsibilities.
Other than during the summer, MAIH organizes weekends outdoors, from Friday to Sunday night. These moments of respite are very appreciated by families, as shown by Blanche Blain’s testimony, she is the mother of Lyne Blain, a member of MAIH and living with an intellectual handicap.
RH: Could you present yourself?
I’m Blanche Dufour-Blain, I am 90 years old.
RJ: You are still living in your home?
In my house, with Lyne (her daughter).
RJ: How old is Lyne?
She is 56 years old.
RJ: How is daily life with Lyne?
For me, it is always the same, since she’s young. When she goes to her internships, I still have to make sure she dressed herself properly, after that, I have to make her lunch, so I have to make it for four days. Monday, Tuesday, Wednesday, Thursday, I’m alone during the day, she comes back at 3pm, so…
RJ: For the daily chores, does she help a little?
She cleans her room every morning, that’s a given…and she takes her bath alone, she washes herself, and grooms herself.
RJ: Would you like to have moments of respite throughout the week?
It’s on weekends because she doesn’t work on Fridays, this is why I send her to the arts (Artistic exploration, a MAIH workshop). You have to go out… some weekends, I don’t want to go out, but I make an effort to go out with her. But, this is why she has the opportunity of going to the weekend camps, I pay for her camp.
RJ: You take that time to…?
To relax! And sometimes, to put things in their place, because… all alone in the house, when she’s with me, I can’t say, I will go through my closet, stuff like that. So when she leaves for the weekend, I take advantage of the time to put everything in order in the house, and to dress myself!
Because it is her that we have to dress, I never have the opportunity to dress myself.
RJ: When you say dress yourself, you mean…?
Buying shirts, pants, winter boots…You always have clothes to buy for yourself.
RJ: Do you get a lot of help?
For that yes, when I go shopping it’s Louise (her second daughter) who drives my car. So we can go further because me, the errands I do with my car, are going to the market and places close by, but when we have to go dress ourselves, shopping malls like in Laval and all that, well, then Louise comes with me.
RJ: Do you have anything to add?
As long as I have help, grants to help me pay for the camps, because they’re not cheap these camps!
This testimony shows us the reality of a mother who, at 90 years old, still has her 56-year-old daughter Lyne in her care, who still needs help with several aspects of daily life. For her, what does respite mean? It pretty much serves as a time to relax and to go about a few essential tasks. This is a testimony that shows only one situation. If we multiply this by 82 000, the number of people living with an intellectual handicap in Quebec, we get an idea for the need for caregiver support.
MAIH still has sunny days ahead
MAIH’s mission will persist as long as there are mobilized caregivers to develop the services offered to people living with an intellectual handicap. There will always be people living with an intellectual handicap as well as the associated needs that are present throughout their lives. As we have seen, an intellectual handicap is a permanent state, it is thus the needs of children, young adults, and seniors living with an intellectual handicap that appear. Also, at each stage of life, these people will have in the majority of cases, caregivers behind them, to ensure their wellbeing, but mainly, their happiness.
Translation: Katherine Mac Donald