It takes a village to raise a child. It takes a community to raise a child with special needs.  The difference between a village and a community is the emotional work that is done together. Without much surprise, the problem is its own solution, because working with a child with special needs is emotional work. But the strength of that community transcends the ‘task’ of raising a child – it also allows the community to develop resilience, which in turn allows them to react positively to abrupt changes. Whether it is climate change, or the end of carbon fuels, or adapting to an aging population, a community built from individuals doing emotional work together as a group will be more capable at adapting to transitions.

That capability comes from a shared understanding of each other, and the confidence in each other to take risks. It comes with a sense of obligation to ensure that our friends are looked after when they are in a rough spot, because we would need the same. It comes to a state of being that has fewer dependencies, more quality of life, and a better experience with one’s neighbours.

But being a parent of a special needs child is isolating.  You have few peers that you can share with, due to the relative rarity of being ‘special’. When you gather with other people, it is perfectly normal to talk about your work, and it is hard to explain the effort that goes into what would be perfectly normal with a typical child. When you advocate for your child’s unmet needs, you know that the resources required by your child must not be seen by the other parents to be taking away from the ‘other’ children.  Those peers who are or have walked down similar roads are just as tired of fighting against the inherent injustices in the system as you are, and have a limited amount of support to give. It’s hard.

At exactly the same time as people with special needs have the potential for bringing a community together, and thereby increasing the resilience of the system as a whole, the families of the people with special needs are currently bearing a disproportionate burden of the reality of the situation. Constrained government budgets ensure that a significant number of people are not available to work in the paid labour market because they must provide the care their family members require. Institutionalization cannot meet the emotional needs of anyone, and to ‘be efficient’ we have dismantled the walls of our institutions, without dismantling the mindset that leads to the monetizing of quality of life, and the entrenchment of a welfare mentality.

When health care is compared between Canada and the United States, we see that for every additional dollar that is spent from the public purse, four dollars are saved from the private purse. Since we are all both consumers of health care and tax payers, it is to our benefit to ensure the public purse is funded more fully, so that it saves us all money. Just as it makes sense to ensure that adequate mental health care, eye care, and dental care are available to everyone, as a way of maximizing both quality of life and productivity, it is only logical to ensure that everyone be provided with all of the support that they need to live a fulfilled life. This allows the person with special needs to be as productive as possible, and frees up their unpaid family care-givers to return to their vocation.

While children with special needs has been the focus of this essay thus far, it can be equally applied to our aging population.  With the Baby Boom beginning their retirement, there will come a time in the relatively near foreseeable future when the amount of support required to care for infirm family members will vastly outstrip the working family’s capacity to provide. Our high-needs families need more support than they are getting today, and it will be getting worse before it gets better. The lessons we are learning today about integrating care, and closing service gaps, and working with the families, will prove to be invaluable in the near future when exactly the same discussion must take place to address the coming wave of infirm elderly.

So, instead of thinking what supporting a child with special needs may do for the child and their family, maybe we should be asking what that will end up doing for us all?