I am writing this letter to inform your readers of an important issue regarding a population of individuals who are in crisis. Parents of special needs children have been able to apply for relief and developmental programming under a funding program called “Special Services at Home (SSAH)”. This funding comes from the Ministry of Community and Social Services. Approval for this funding program required that the child meet the criteria and an amount was given based on the level of need. Once the funding was approved the parents had to send in invoices with the signatures from the workers who provided the relief or implemented the developmental program.
The “Special Services at Home (SSAH) program gave funding to children and adults with special needs. Parents use this funding to have before and after school support, to take their other children to their extracurricular activities, to have a date night, to have therapy done at home with their child, to visit their aging parents, to go to work, etc.
This funding also allows to the child/adult with special needs to go to community events without mom and dad. This teaches independence and is a normal phase of life to do activities without their parents.
As of April 1, 2013, the Ministry of Community and Social Services is cutting this funding program once a child reaches 18 years old. The SSAH program will only be given to families with children under 18 years of age.
What does this mean to the families with a child over 18 years of age?
For some families there will not be the care before and after school. One parent will have to quit their job. It will mean that any extra therapy done at home will not occur and the child will regress. It will mean that there will not be supports so mom or dad can attend their other children’s activities or visit or take their aging parents to appointments. It will mean these parents who have devoted their entire life to their child with special needs will not go on a date, participate in community events together and even dream of a few days away alone. There will also not be outings in the community for their adult child and the hope of their child’s gaining independence will become impossible.
Parents with a child with special needs age just like everyone else. They will face medical challenges, just like you will as you age. They also support their other children through post secondary education, in finding a job, getting married, etc. Without the SSAH funding parents with a child with special needs will not be able to be a “normal” parent to their other immediate family members.
As a parent of a 25 year old child with special needs, I am proud of the job we have done caring for our daughter in our home. Having her in our lives is a blessing and a true joy.
I am also grateful I have been able to volunteer, support my two other children as they have grown up, had the privilege of travelling seven hours to be present at the birth of my grandson and been an active member in my mother’s life.
Our holidays consist of a few nights away each year. There is no hope of a seven day vacation and a spontaneous evening out. This is okay. We have accepted our lives as we age together caring for our daughter at home, BUT we cannot do this with the minimal funding we get.
The maximum SSAH gives is $10,000 per year. This means eight hours a week of help. The average SSAH amount given to families is $4,000.00. This means 3.5 hours per week of help.
Imagine you are told you will have an aging family member come to live with you next week. This family member requires 24 hour care. He/she cannot be left alone at all.
Your reaction is that you love your family member but you are not able to care for her/him because you work, you have activities at night, you volunteer, you help care for your grandchildren or aging mom/dad.
The response to you from the Ministry is “WE DO NOT CARE!”.
Try to imagine caring for an aging loved one for 30-60 years. This is what parents of a special needs child does and they are so proud of this special task.
The Ministry of Community and Social Services has decided that now there will not be relief funding for a parent with a special needs child turning 18 years old. As a result, some will lose their jobs, some will not be able to cope, many will no longer be able to attend functions as a couple, some will get depressed, and so much more.
I also have to add there is no new funding being provided by the Ontario government for adults with a developmental disability. The waiting lists are growing and growing. It is up to 30 years to receive a residential placement and this may not be the choice for everyone. The entire system to assist those with a developmental disability is in crisis.
Jim McDonell MPP will host an evening on Tuesday, October 9th at 6:30 p.m. at the North Stormont Place-Community Centre, 16299 Fairview Dr., Avonmore to hear from the families who are being affected by the cut of SSAH funding.
I encourage others to attend and hear the families’ stories. Please share this important family forum with those in your life who have a child/grandchild with special needs.
We need to come together to share, listen and state loudly that in Ontario we need to take care of our most vulnerable population and their families.