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Notes from Presentation by Lived Experience of Poverty Panelist Laurie Larson
November 8, 2012
April 11, 2012
The Fight Against Poverty and Exclusion in Québec: Mixed Results, Including for Persons with Disabilities
January 17, 2012
(Laurie Larson is the President of the Canadian Association for Community Living.)
Good morning. Statistics tell us far too many families in this country are trying to raise their children with disabilities in poverty. There are a number of reasons for this, including the additional costs of disability and the all too frequent need for one parent to stay out of the paid labour force to provide caregiving support.
If you happen to be a single parent who needs to stay home to provide that care, your only option is social assistance, which we know only provides a poverty level existence.
Poverty isn't always abject, though. Even those, who are not in dire straits, have their financial means and stability affected. There is also social poverty to be considered.
Families with children with disabilities are often isolated and disconnected from their communities. When your child is excluded from the activities and connections others take for granted, often the rest of the family is too.
Today, I will tell you a bit about our family's experience. I have three sons between the age of 20 and 25. My two youngest sons both have disabilities. We live in a small town in rural Saskatchewan. I have now been out of the paid labour force for 25 years.
This has had an economic impact for my family, but it certainly isn't the only impact.
I should tell you a bit about myself, just to give you a bit of context. When I was young, I took pride in caring for myself. I did not come from a family with money growing up. I worked when I was 15, moved out of my parents’ home when I was 17, bought my house when I was 18 and I was investing in RRSPs by the time of 19. I was self sufficient. I got married at age 22 and while I worked, my husband attended school. I continued to put some money into RRSPs, not a lot, but what I could, so that when the time came that I had children, I would be able to access that money when I didn't have an income. That was the point of it. Needless to say, that little bit of money ran out pretty quickly. I never anticipated that I would not be able to return to my career when my sons were no longer babies. Having children with disabilities changed the plan pretty quickly. I still thought it would mean an extra few years at home. I envisioned them going off to school and me going back to work.
Well, that wasn't going to happen. In my experience and the experience of many moms that I know, the school system is one of the most unsupportive systems that we come up against. The school had me on a very tight leash. It became clear early on that it would not be possible to hold a job and deal with the expectations the school had for me.
The school would not provide transportation or noon hour supervision for my sons so I had to run back and forth to school four times a day at a minimum. There were many times when it was more than four as I was often called to pick up Ben during the day. To make a long story short, 25 years later, and I’m still at home without an income. 25 years of my lost earning potential has had a major impact on our financial situation, as you can well imagine.
But it had a much more profound effect on me personally. Given what I have told you about myself and how proud I was of being able to take care of myself and being financially self sufficient, losing that had a devastating impact on me.
I had lost my identity. I had lost control of my life. I was living under the thumb of the school. I was isolated and had no social supports.
I knew there were things my family needed that we couldn't afford and felt that I was to blame because I was not contributing financially.
For a number of years, I stopped spending any money on myself. I could not justify it, when there were things that were more important that my family needed.
We only had one car. That was all we could afford. I needed that to get my kids back and forth to school every day, so my husband could not use it to go to work and there's no public transportation in small town Saskatchewan. There were occasions, though, when he would need to go out of town and take the car. I would have to phone around to try to find somebody to lend me a vehicle for the day so that I could get my kids back and forth. A lot of times I would just keep my kids home that day.
I wasn't the only one whose career was impacted, though. My husband is a teacher and had been a principal for 10 years. He was the principal of the school that our sons attended. Back in 1998, Ben had a permanent expulsion at age 10. I fought back, and got him back into the school again, but he was locked up, isolated from the entire school population all day. My husband also objected in his capacity as principal. No child in his school should ever be subjected to that. The director's reply was that it was too complex; being both the parent of a special needs child and the principal, and then stripped him of the principalship. Again a financial impact. Yes, we were already living paycheque to paycheque and suddenly we had to adjust to a fairly significant pay cut as my husband went back to a teacher's salary. It took awhile. This was not in the plan either. We did cut back and eventually adjusted.
The bigger impact, though, was once again on him personally. In his case it had a real impact on his health. Eventually the stress took its toll and he had a heart attack at age 42.
There was an impact on our older son Tom's income. When he was older, he was qualified to help provide the support we needed with his brothers and he was willing to do that for us. At a point in his life when, like I was doing at his age, he should have been working and bringing in money to build his future, he was at home as the third caregiver. As a result, when it came time for Tom to go to university he had no money saved for this and neither did we.
Without a doubt, our financial realities had an impact on Ben and Kevin as well. All parents know that if you want your child included in the community throughout their lives, you need to get them out there and involved from an early age. They need to be out and about and involved in things so people see them as part of the community. In order to do this, though, you need to be able to foot the costs involved. We did the best we could. They could have been involved in more things and had more experiences had we been able to afford it.
When you are talking about the financial impact of disability on families, this issue goes much deeper than just money. As adults, a large part of our life and our identity centres on our work and our ability to provide for our family. When you don't have the supports necessary to be able to work, or your job choices are limited, the impact is felt in every area of your life and by every member of your family.
Ideally, families would have access to supports, protections, accommodations or flexibility, to enable them to participate in the workforce, pay their taxes, complain about paying their taxes, support their families and contribute to their communities just like any other family.
Everyone would benefit from that.
We also know that for families with sons or daughters with intellectual disabilities, the caregiving responsibilities rarely end when your child turns 18, but can continue on for many more years.
We know that there are seniors who still care for their adult sons and daughters at home. We know that many, many moms face their senior years without the economic security that comes from pension benefits earned over a lifetime of employment.
Another very important point to realize, though, and I think the most important one: is that my family is one of the lucky ones.
Yes, things were tight, but we didn't live in poverty. We may have only had one income but my husband didn't work for minimum wage. I was not a single mother trying to raise my children on social assistance.
We may have carried a huge debt load for a number of years, but at least we were in a position to be able to do that. If you are living in poverty, you don't have access to credit.
I can't even begin to imagine how families who are living in poverty manage the incredible stress that they must be under every day. I can't understand why in a country as affluent as Canada, we allow this to happen. We know from the statistics that a high percentage of families raising children with disabilities live in poverty. We know that people get trapped in poverty and their children are at greater risk of continuing to live in poverty as adults.
We know from experience that those families cannot come to events like this one today.
They remain largely invisible. That is why it is allowed to continue. They’re invisible and it is easy to ignore their reality.
If we want the situation to change for those families, we as individuals and organizations need to speak up on their behalf and make sure the governments hear and understand. Our governments at every level have to step up and invest in those families.
Families don't want to go back in time. We don't want our children taken away and locked up to relieve the financial pressure.
We want to raise our children ourselves in inclusive communities. We want access to some supports so that we can work and provide for them ourselves.
As for my own personal lived experience with poverty, the truth is I fear that that is yet to come. Since the introduction of the RDSP, my son's financial future is more secure, and that gives me peace of mind and for that I’m very grateful. My husband has a pension coming to him when he retires. Should he need to go into long term care, 80% of that pension will go to meet that basic cost of care.
I am a caregiver with no pension of my own. How will I support myself? Will I be faced with living in poverty? Is that the price I will pay for loving and raising my children?
Last night, we celebrated 30 years of achievements. With a little effort and commitment, and some political will, we could add ending the poverty of families raising children with disabilities to our list of achievements.
Many families across this country are counting on us to do that. Thank you.
End Exclusion supporters rally in support of an accessible and inclusive Canada.