I know it's long ...Since Global News could only cover 2 minutes of my concerns, they could not cover all of it. This is part of what I sent to the Ombudsman, please share share share.
Parents with special needs children are exhausted and drained, not because of the disabilities of their children but because the system is so exhausting to deal with!! You cannot get an answer to any questions, we get transferred over and over to one person to another!! Constantly!!! Its beyond exhausting ...its crushing! how can an adult with special needs ever be independent when those of us deemed to be "normal" spend hours and days shuffling through the program called Social Development. For 18 years i have been dealing with them and trying to figure out what services are available, what is required , what new form i need to fill, but i continue to be lost and be lead by a system that seems to make it their mandate to complicate everything!!
We have special need children and it’s as if we are punished for this. We constantly hit walls, doors closes; the right hand does not talk to the left. One person tell us one thing, the other one tells us another thing.
The Adult Transition for my son has been the hardest I have ever had to deal with, they fall into the cracks of society and of the social development program and no one seens to care. There is nothing for them after school. What do we do? No one gives us information, we have to figure it out ourselves.
What option do our kids have after school : the Social Development Cheques or work at a workshop for $10.00 a WEEK!! Those ate the options! They are diagnosed Special Need, Adults with intellectual disabilities are treated the exact esame as a person applying for Social Assistance. They do not take into account that they are limited, either mentally or physically. Their requirements are so overwhelming that they will never be able to comply with all their rules and regulations (need to send their pay stub on a monthly basis, if they forget, their cheques are cut off, their monthly stmts of information are impossible to make sense of, calls are not returned, forms are in the dozens)Can you imagine them trying to become independent how difficult it would be? And to make them feel even more valuable, all cheques cashed at the bank requires that they
show them their little WHITE CARD. Don’t you think they were humiliated enough all their lives in school, friends, ect. They keep telling us they are included, but they are not. At LJR, they still have that Special Table for them. Its 2017!! Why are we still allowing this? Don’t get me wrong, Ryan loved LJR, but for the four years he was there, not once did he eat at LJR during Lunch, because he felt he had to sit at the designated table. Its heart breaking.
I open so many doors for my son, but it came with a price, my other son did not get all the attention that he should have had. Thank god I had a great job, so I could submit my leave and attended numerous meetings for Ryan.
Did you know that I am dealing with numerous people right now, do you think that Ryan could handle this? Or if even something happens to me, what will happen? I deal with a Case Worker, A social Worker, a person from NBACL, a person from College, his mentor, his employer, support worker, Home Access, than I have to put myself a reminder to send his Pay Stub every month. Oh and they do not like to receive by email, they rather fax or drop it off in person!! Then I have to worry about his prescription, and entertaining him And that is not counting his doctor’s appointment, his hearing aids, medications, etc. Us as parents will never have the independence life like other parents with children. If we leave for a weekend, or even an evening, we need to worry. Oh yes, I have relief weekend, but guess what, my mom or his brother cannot sign, but they rather we ask pure stranger or someone that Ryan is not comfortable with to entertain them. But they do not take into account, Ryan’s stability and comfort zone. It’s because there was abuse in the system and we are again punished by this. But they do not realize we have limited families.
Ryan is now in College, it took three years, and it took meetings, after meetings, forms after forms, and finally all was accepted. He won $4000.00 in bursaries, but he could not enjoy it, because HE IS ON Social Assistance and every cent was taken out! Ryan = Poverty.
They are special needs adults, can we not have a simpler system? Can we not strive to make their lives better and not a never ending battle if bureaucracy??
And then, when I can no longer take care of Ryan, what will happen? I have to place him in a seniors home at the age of 35??
These people they did not ask to be mentally challenged or physically challenged, but are constantly penalized and will live forever in poverty and in the grasp of a broken system.
I constantly talk to Parents who deal with this every day, and they are just drained and exhausted.
I pray to God that I will be healthy for the longest time.
I could go on and on and on.. I already talked to Cathy Rogers, she attended a forum, but they do not realize how corrupted Social Development is or the system. And they should not blame it was the Conservation, or Liberal, or it was limited budget. It’s called POLICY, EMPATHY, SYMPATHY, ORGANIZATION and going the extra mile for these challenged adults. Something needs to change. They need to make it easier for Adult with special Need, and the aging parents that still need to be on top of everything. I have been dealing with so many things ( all because of social development)and I have been crying for the last month. For the people that know me knows I do not cry for nothing, so this means I am at the end of my rope.
Cheryl and Ryan xox
