What's New? June July 2007.
Every Child According to his/her Needs.
ficcdat.ca conference
A conference was held in Toronto last week which took over 4 years to plan. There were 5 separate conferences run at the same time. You could sign up to go to any session at any conference if you bought a multi-conference access or you choose one subject area, you could still attend one session in any other conference each day. The focuses were:a general medical conference; advances in neurology; growing older with a disability; technology for aging; care giving..
In a rare break from normal, Trillium grants were used to allow 29 couples on Disability to attend the conference. Ross went to the Care givers conference while I went to Growing older with a disability.
I pointed out many times of the ridiculous age limits on many of our services. When I got my hearing aids I was 54. I had to be 55 to get the counseling. The cause for the counseling should not be age related at all, merely getting hearing aids means you can benefit from counseling about using them.
Many of the age related research is limited to 55 and above, and there can be many years after 55, my brother's mother had 48 more years, and the curiosity about aging seems to be more the 80's and up. However someone with a disability might not even get to 55, or might look much older, or feel much older.
MILD, MODERATE ,SEVERE PROFOUND
I ws also talking to a woman from the US government who was showing places that she funded research. I used the words Handicapped to describe myself and my son. She took a whole paragraph in her response that she found my labeling to be offensive, and almost managed to remove the importance of my comment which was that Handicaps were described as mild, moderate, severe and profound. I said the bulk of the research was only on the profound end of things, but the importance of all the levels had to be incorporated into the research grid, and the future expectations of services needed to include ALL LEVELS.
Funding Caregivers
I also find a vast difference between studies and reality. Someone told the Ontario government that people with disabilities want jobs, and there is now a bi program which allows you to earn a little more money before being cut off Disability. I am older, with a progressive disability. The world had a chance to provide me with a job which would me to save millions towards my old age, but did not even see fit to provide me with an income because the handicapped child was mine. When Reid was 10, and defining his other disabilities, we finally got Ontario Handicapped Children's allowance which paid for the hearing aids. He did not get Handicapped Children's allowance for his hearing loss. Many governments have been resistant to the idea of funding parents of children with special needs .
Our current government iis very proud of a new plan which allows parents of severely disabled children to put money away for the child's future like a RESP, but they expect the parents to acquire the money. I know many many parents of children with severe disabilities and none of them have enough money to put away money for the future. It is common in Ontario for the parents of handicapped children to use the allowance to fund life insurance on the parent so when the parent dies the child inherits more money to look after his future.
Any money which the child gets must be in a Henson trust so the basic Ontario Disability money is not cut off until the life insurance money is spent.
http://www.kpopelaw.ca/TorontoStar.htm
In Britain and Australian, care givers are now paid. A vast step forward, but still maintained in poverty. If the parents live in poverty so do the kids.
Childhood Poverty
Childhood poverty is one of those concepts that the government like to talk about, but the solution of really funding the real costs of having children by the state rather than the parents. At the same time babies go on being born into families that cannot afford them. Of my children's friends who have gone on to reproduce, these who waited through university can provide a better material life. Not all children's parents are going to go to university. Not all the people who have decided to have babies should have done that. I have great difficulty observing a 15 or 16 year old girl picking out one of the stupid men who is already a father with another woman. By becoming a mother, the woman is eliminating her own choices...yet she thinks being a mother is easier than working.
When you are reading this in another country which has no services, you probably think we have it pretty good in Canada. Some times we do. The biggest step that my children's generation is doing is getting both parents out of the house to support the children.. There is no longer permission for the man to lie on the sofa and be waited on when he gets home because they both went to work, and the kids went to Daycare. They both have to manage the house and the children or hire someone to do that work. The current generation has to deal with the issue every day.
Past generations of women did not have high school, married for love and took care of the physical needs of the old and young people in the family for free. The next generation has woman who have mostly finished high school, if not college. They have high materialistic expectations than I did at the same age. eg I got a car when I was 34, before that I walked everywhere with the children beside me or in the stroller. A place big enough for children and parents takes two incomes to support.
How Can I help each Child
A lot of these issues may seem pretty far from where you stand, but all the battles in the past have been to shift from no services to admitting that profound handicaps exist to admitting that mild, moderate and severe handicaps also exist and need to be serviced. When the kids are in Daycare, the parents do not have the child at the best learning time, so the Daycares have to be better naturally running in the "How can I help?" rather than "How can I hinder.?"
All the parents have a responsibility to see that the system they are building includes every child according to his/her needs.
PAM Candlish June 29, 2007