AUTISTIC BOY 'TOO OLD' TO RECEIVE HELP
Wednesday, October 22, 2003 (16:12:36)

Posted by sylvia

Canada - Town Crier, 26/09/2003

An East York family is struggling to find a way to get help for their autistic child after they were told he was too old to receive help from a local autism support group.

Alfonso Samenez, says his six-year-old son, Xavier, used to go to the Danforth Childcare Centre where he received help from the Toronto Pre-school Autism Service (TPAS), a group that delivers services to autistic children within educational facilities and day-care centres. Most facilities are not equipped to deal with the special needs of these children and as such, need outside support.

Unfortunately, TPAS is funded in such a way that children are only served up to the age of six, believing they should be able to adjust and go right into the school system. Samenez says that, now his son has reached that age, he is not sure what to do for Xavier, who has not received the full term of service and is not ready for regular schooling. He now temporarily stays at home.

"TPAS is funded by Community and Social Services," Samenez says. "They say they don’t have the money, and their policy is that they don’t deliver services to children that are six years and older."

He says TPAS is a good programme, but the services were stopped at the daycare, and they had to go to the Holy Name school. Personal problems made them stop the service altogether for a time, but when they tried to resume it, they were told the only way it could be restarted is if the government would send the funds.

TPAS’s own rules state that the only exception for receiving service after the age of six is if a child has been referred, but has not yet received one year of service as of his or her sixth birthday.

One institution that uses TPAS defends the service, saying it is hampered by the level of government funding afforded it. Susan Mullen, executive director for Surrey Place, a centre that serves people of all ages with developmental problems, says TPAS has done some great things, despsite funding restrictions.

"It’s a very intensive programme, generally 20 to 30 hours a week per child, so there’s an issue around the level of staff required for each child," she says. "The issue really is that there’s only funding up until the age of six."

Outside of TPAS, she says, there are additional services available such as behaviour therapy counselling, but it would not be as intensive.

She says Surrey Place is looking at more staffing levels, and they are becoming aware that there are some issues around the transition phase. The government, she adds, has made more funding available to hire staff for transitional co-ordination. It does not mean direct one-on-one service, but it is designed to help parents manage the children’s way into the school system.

A Toronto District School Board trustee, Shelly Carroll, calls it a very difficult situation, that happens frequently. "The problem is, TPAS is a very clearly defined early childhood programme," she explains. "The children are only funded until the age of six because it’s assumed that at that age they’ve now reached the point where you can now have an Identification, Placement and Review Committee (IPRC) meeting at school, and everything will be fine and you can just move on in from there. Whatever support they need should just flow from the school."

Carroll says another problem is that TPAS is helping in a range of needs in children, and for those that need intensive support, it takes a long time to go through the school identification process and get the funding for them. For all those families, there is a gap between when TPAS ends and the point when they have fully identified everything needed in the school boards.

"If it were designed in such a way that there was a real connection between the school board and the TPAS programme, it would be easier to ensure that that happens," Carroll says.

She points out that there used to be a school with a TPAS programme which worked with the North York school board in that way. As children were nearing the end of their kindergarten years and heading for Grade 1, there was an IPRC meeting including staff from that agency and staff from the board and it was all sorted out. That, she says, is not happening now because of organisation and a backlog in the school system.

Carroll, the parent of an autistic child herself, says the funding has gone up for these types of services. A lot of the extra money goes toward training, because in the school system everyone needs to understand how to deal with an autistic child.

Ann Machowski-Smith, communications co-ordinator for the Ministry of Community and Social Services, says that Ontario is the only province that funds specifically for autistic children in the school system. She says there are programmes for children after the age of six, but she admits those are not for those suffering from autism. This, she says, is changing.

"There’s a pilot project we’ve just introduced right now called Bridges. It’s taking place in London [Ontario]," she says. "It’s for autistic children aged six and up."

Bridges is designed to help older children to develop social, communication and behavioural skills that they need at home, school and community. It provides children with a two-hour-a-week, session group-based programme for 16 sessions per year.

Unfortunately for Samenez, there is no word as to when this will start in Toronto, if it does. They have just found out that their second child, at the age of three, is also autistic, so he sees the pattern repeating for him and his family.

"There are not enough funds to help these kids and their families," he says. "There’s an economic impact here, as well, that no one is addressing. In families like ours, a lot of times one parent has to stay home. After school, there aren’t too many daycares that will take these kids."

At this point, he has to raise his voice because Xavier, for reasons known only to Xavier, starts to scream. "It causes a lot of stress," Samenez yells.