No Place To Go – MEETING WITH PROVINCIAL CANDIDATES TO DISCUSS LACK OF SUPPORT FOR INDIVIDUALS WITH INTELLECTUAL DISABILITIES

NO PLACE TO GO – Meet the candidates article September 2011

 

By

Dave Hagerman

http://www.emcperth.ca/20111006/news/Families+share+concerns+with+candidates

 

On September 26th and 28th, Tayside Community Residential & Support Options hosted meetings with the Provincial candidates for the Progressive Conservative (Randy Hillier), Liberal (Bill McDonald) and NDP (Dave Parkhill) parties. The candidates met with over 20 Lanark County residents who have been languishing on waiting lists for sometimes more than five years. These families are representative of the over 1200 requests that are currently on waiting list for support services in our riding (Lanark, Frontenac, Lennox & Addington). In fact, some programs provide support to fewer families now than four years ago; even though the need has increased.

Families who require a space in a group home described their plight as The Death Watch. They must wait until someone dies before there is a space. They described how the guilt associated with being forced to think like this takes its toll after awhile.

 

Families told of the emotional trauma associated with the child’s 18th birthday. Financial help disappears when the child reaches 18, even though their needs become even more complex when they are adults. The right to special education disappears at age 21. They described it as being pushed off a cliff with no life line and no support from the Provincial Government beyond being told they can fill out a form and be put on yet another list.

 

An older couple (82 and 85) discussed the feelings of insecurity of what will happen to their 55 year old son when they reach their final life transition. They have cared for him all their lives, and saved the government millions in the cost of care but when they need help and security for their son, they are told to wait. They are 430rd on the list. In a random sampling of ridings across Ontario, over 1,450 parents over the age of 70 are still providing primary care to their adult child or family member: (CLO: Ontario). They feared for the mothers who have stayed home to provide care and have no pensions beyond the old age. When the mothers are left alone they will be poverty stricken with no help in sight.

 

A young family with three autistic children who have also been on waiting list for years, told the story that they never travel together for fear if both of them were injured in a car accident there

would be nobody to care for their children. Other families have never had a vacation because of lack of respite care.

 

Another young family described life where the support they receive for their son’s medication covers less than 25 % of the actual cost. They hold concerts to fundraise money so the family can eat and survive. Everyone in the room was aware that 80% of families break up because of the tremendous strain this lack of support puts on relationships of all kinds.  The consequences then generally falls to the mothers who are then left alone to care for their children with very little support and the knowledge that they must fill out yet another form to be placed on yet another waiting list.

Most of these families told stories of filling out up to 15 different forms to be on 15 different waiting lists to wait for supports.

 

 

Disabled adults told about life either on the street or living in squalor because the income supplied by ODSP (Ontario Disability Support Plan) was not enough to pay for food and rent. The lack of supports for those living independently in some case leads to them ending up in jail.  They must steal to survive. Others end up living in tents. The government has frozen budgets to agencies that support these folks for the past two years, so there is no more supports to help these individuals survive.

 

There was frustration about government priorities where support for those individuals who really cannot look after themselves accounts for such a small portion of government spending while other ministries take so much of the money. The point was made that the government will spend millions in expensive medical and hospital care to ensure a disabled infant lives to be discharged from hospital but then spends virtually nothing to ensure the child and the family survive.

 

All families expressed the feeling that the system is failing them. They took little comfort in the Ontario Government’s announcement that $20 million is going to be spent to develop a new bureaucracy with yet another waiting list with no permanent increase in service levels.

 

 

All the candidates heard the families and committed to take their message to Queen’s Park. The purpose of the meetings were not to help folks to determine who to vote for but to help build a genuine understanding among the political class of the tremendous struggles families with a member who has disabilities must endure  and how they feel forgotten!!!!!!!!!!!!!!

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