Hi Folks,
Every once in a while there is an article in the media dealing with autism that just leaves you speechless and shaking your head. One of the frequent themes of these kinds of articles is how governments treat individuals, families, and the collective community.
You may recall that in Quebec, for the past two years or so the provincial government came under a lot of heat and pressure from the autism community because of a substandard system. The government repeatedly stated that it was being reviewed with the intent of announcing a major program overhaul, etc. The announcement of the overhaul and new program kept being delayed. That is often the sign that there are some clear problems behind closed doors. Well, they announced their program a while ago. Have the complaints from the community ceased? Nope.
The latest story in a CTV report is quite revealing. Check out the story (copied) below (link also provided).
Consider these things:
- to cover the costs of treatment, the parent has had to make use of “private donor and charity”. In Canada in 2017!
- Application for supplemental funding to the provincial government was turned down. Hers is not alone! Of the 3,400 applications that have been evaluated to date, the government has turned down 54%.
- The government says his impairement is “not severe enough to warrant the extra funding”.
- Parents “get stuck in the paperwork”.
- Very few ask for a review and most “simply give up”.
- We can all relax and rest assured, knowing that the government agency “of how difficult it can be for parents…”.
- The child’s school, psychiatrist and therapists describe the situation as “urgent”.
- ABA helped the child, but once he started school he no longer qualifed for ABA, and went into a “tailspin”.
- Parent is terrified of child losing more than what he has now and they go back to square one.
This is such a disheatening story that you really have to read it to believe it. And yet, who in our community, can say that they never heard of such things before? Government program after government program and it is the same old bureaucratic obstacles, blockage, excuses, red tape, insenstivity, hostility, and lies (especially the one about government knowing how difficult things are for parents – you have to live it to fully appreciate it).
Where’s someone like MLK when you need him or her? I have a dream, that someday, people going to hospitals will not be subject to a decision on whether their illness will be treated based on whether they are fortunate enough to have an illness on a list of approved illnesses, but that all kids with illnesses, including autism, will be treated on the basis they they need treatment, they are citizens, their parents paid taxes, and the equality provision in the Constitution actually means what it says. Oh Lord, I have a dream, that someday, articles like the one below will be relegated to the trash heap of history. Yes, I have a dream.
http://www.cbc.ca/news/canada/montreal/lachute-mother-fights-back-after-quebec-turns-down-stipend-for-autistic-son-1.4266856
<h1 class=”story-title”>Lachute mother fights back after Quebec turns down stipend for autistic son</h1>
<h3 class=”story-deck”>Tina Chapman is 1 of 100s of parents denied extra funding to help care for their severely disabled children</h3>
<p class=”small lighttext”>By Leah Hendry, CBC News Posted: Sep 05, 2017 5:00 AM ET</p>
Tina Chapman’s sole goal this summer was getting her son Blake back on track after his difficult year in kindergarten.
It’s meant early morning treks every week to Montreal from their home in Lachute, Que., 85 kilometres away, so the six-year-old can get therapy for his autism.
They also go to Laval once a month, where he receives occupational therapy for dyspraxia, a developmental disorder that affects his co-ordination.
For now, a private donor and a charity cover those costs, but Chapman says more money is needed to get Blake all the help he needs.
She thought she’d found the answer last year, when the Quebec government announced it would offer parents a special supplement to help care for a child with severe disabilities or a serious illness.
Chapman planned on using the money — about $11,000 a year — to help pay for additional therapy.
Her application was turned down.
Astonished, Chapman appealed that decision. To her dismay, it was rejected again.
Chapman is one of many parents who had their application rejected.
Since the program started, Rétraite Québec has received nearly 3,900 applications.
Of the nearly 3,400 applications evaluated so far, 54 per cent have been rejected.
In a letter explaining its decision, Retraite Québec, the ministry responsible for disability payments, said while it doesn’t deny Blake has a disability, it doesn’t consider his impairment severe enough to warrant the extra funding.
Chapman was shocked.
In addition to autism and dyspraxia, Blake has a severe speech delay and a sensory processing disorder, and he suffers from anxiety.
Chapman is one of many parents who had their application rejected.
Since the program started, Rétraite Québec has received nearly 3,900 applications.
Of the nearly 3,400 applications evaluated so far, 54 per cent have been rejected.
In a letter explaining its decision, Retraite Québec, the ministry responsible for disability payments, said while it doesn’t deny Blake has a disability, it doesn’t consider his impairment severe enough to warrant the extra funding.
Chapman was shocked.
In addition to autism and dyspraxia, Blake has a severe speech delay and a sensory processing disorder, and he suffers from anxiety.
The Quebec government first announced the supplement for disabled children with exceptional care needs in spring 2016.
With it, came a projected budget of $10 million a year.
To be eligible, a child must already be getting the basic supplement for disabled children, which gives parents $190 a month.
A team of physicians evaluates each application, but the assessment isn’t based solely on a diagnosis of a physical or mental impairment.
To qualify, the child’s ability to feed, wash, move, communicate or go to school must be severely limited or absent.
Electra Dalamagas, who is in charge of family intervention at an advocacy group for people with autism, Autisme Montreal, has spoken to many frustrated parents who applied for the supplement.
“There has to be so many severe limitations on top of the diagnoses, and they have to have the paperwork to support all of this,” said Dalamagas. “A lot of parents got stuck in the paperwork.”
Few people appeal: to date, only 252 people have asked for their case to be reviewed.
Chapman is one of just five cases that have gone above Rétraite Québec and appealed to Quebec’s administrative tribunal.
Dalamagas says many parents simply gave up.
“You wear people down,” said Dalamagas. “Eventually people give up chasing after reports and trying to make sense of things when you haven’t slept for three nights.”
“You have to make supper, you have to remember to wash at some point. You’re talking survival mode for a lot of these families.”
A spokesperson for Rétraite Québec says the agency is aware of how difficult it can be for parents to get access to all the documents requested.
It now asks for parental consent, so the government can access the child’s health and education records directly. However, of the nearly 500 applications still waiting to be processed, in most cases, Rétraite Québec is still awaiting documents in order to make a decision.
Chapman says she’s determined to keep fighting for the extra supplement.
Blake’s school, psychiatrist and therapists all insist that her son needs substantial support in all areas of his life.
In the letters they wrote to the government on his behalf, they described Blake’s situation as urgent.
Blake has to repeat kindergarten this year, something Chapman believes could have been avoided if the government had given her the supplement.
She’s convinced of that because prior to kindergarten, Blake was doing well.
Before he started school, he received publicly funded therapy called applied behaviour analysis — or ABA — three times a week.
His mom says ABA helped him learn to speak, communicate and socialize, and he was able to attend two full days of pre-kindergarten a week with few problems.
But in Quebec, once children with autism start regular school, they no longer qualify for government funding.
Without the ABA therapy, Blake went into a tailspin.
Desperate, Chapman went public with Blake’s story last winter.
A private donor and charity then stepped up to help. This summer, he started making progress again, but Chapman knows she can’t rely on those funds forever.
She says Blake needs long-term, stable funding that will allow him to get more therapy.
She’s terrified of what could happen if he loses what he’s getting now.
“Chances are he’ll lose all these skills again, and I’ll be back at square one,” said Chapman. “Basically I lose him, and I have to watch him go away right before my eyes.”
She believes continuing the appeal is her only option.
Late last week, Chapman’s legal aid lawyer told her Retraite Québec has offered to try to reach a settlement with her through mediation.
She said she’s open to seeing what they have to offer but won’t settle for less than what she believes Blake is entitled to.
“If I can get this battle won, it could open the door for a lot of other families that were denied,” said Chapman.
