Posts tagged adults with Autism

Day 220 – The Wonderful World of Adult Services

 

I have to be honest, I haven’t posted much lately because I haven’t had a whole lot of positive stuff to post about. I really struggle with posting the negative stuff because it makes for some awful reading material. I am an optimist and naturally, what I enjoy putting out there is positive stuff. It’s difficult to express some of the more unhappy things and the reality is, there is quite a bit of negative things. Read More

Day 214 – Anxieties

I have been away from the blog for such a long time, and so much is going on, it can be difficult to even put words to all the events and phases that are upon us.

My boys are getting bigger and with that, naturally when you are in “the system” that means transitionTransition for the most part means change and in the autism world, often times it also means struggles, behaviours, difficulties, new things and anxieties for both parents and children. But for the most part it ends up being for the better. Read More

Day 161: Adults with Autism – Crisis

With autism, there are different stages in which parents and kids have adjustments to make.  First is from diagnosis to pre-school.  Second is pre-school to elementary and then from elementary to high school and last from high school to assisted living or with less severe adults, into work programs.

Each phase usually involves a whole new team of assessers, advisors, and facilitators.  It usually involves different government funded branches of social services and new paperwork and protocols and certainly a period of transition for kids and adults with ASD and a whole lot of stress for families.

Currently we are in that transition to high school phase for one son and then again next year for the other but we should be pros at it by then.

It is the next phase that is giving me a little stress and I am going to enclose an article in the Toronto  Star which tells the stories of so many that are in crisis right now for what will soon come for our family.

Andrea Gordon
Family Issues Reporter 

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Gloria Noseworthy fought for 21 years to build a life for her son in their Innisfil community, where everyone knows him and friends greet him with hugs and high-fives.
But the single parent is running out of steam. Zach has a developmental disability and autism. Until he graduated from high school last June, his days were fulfilling.
This fall, the positive momentum came crashing to a halt. There aren’t enough day programs for young adults like Zach. And now because of changes to provincial funding for families who care for their adult children at home, Noseworthy is struggling to make ends meet.

Chronic underfunding is pushing parents of developmentally delayed adults to the brink, say families and advocates across the province.
Wait time for a spot in a group home or supportive housing can take years. And parents like Noseworthy, who want their kids at home, don’t have enough support.
Instead of going to her job at a drugstore, Noseworthy spends her days searching for care options and driving Zach to whatever supervised activities she can find — two hours of bowling one day, an exercise class the next. Routine and social interaction are critical, and already she sees her son backsliding and starting to disengage.
“The system is not working,” says Noseworthy, 52. “Why are we having to fight for something we shouldn’t have to fight for?”
In the last few weeks, three families in crisis have gone public, saying have no choice but to surrender care of their adult children because they can no longer manage.
“These stories are only the tip of the iceberg,” says advocate Janis Jaffe-White of theToronto Family Network. She recently helped launch the Ad Hoc Direct Funding Group of families and support workers from around the province calling for urgent solutions.
The situation has become so dire that Conservative MPP Christine Elliott launched an all-party select committee at Queen’s Park, hoping to propose solutions within a year.
“There needs to be an influx of funds into this sector to allow people to have the opportunity to be included in their community,” says Elliott, her party’s health critic and deputy leader.
“Because the reality is when they finish school at age 21 there’s nothing out there for them and they end up watching television in their parents’ basement.”
To not provide the funds makes no sense socially or economically, she adds.
It costs at least $100,000 a year to provide residential care, while those at home typically receive a maximum of $25,000, and most get far less.
The latest blow to families was the announcement last spring that Special Services at Home (SSAH), a 30-year-old program for children and adults that provides up to $10,000 a year,would no longer be available to those over 18. Those already receiving the funding were grandfathered until next April 1.
The news, which came without warning or consultation with parent advisory groups, has caused panic and confusion. Many rely upon those funds to hire support workers at home, cover respite care and help their children develop skills.
Direct funding for adults will now be distributed through the Passport program, which was introduced in 2005.
But that program has been plagued with backlogs, with 3,700 on the wait list. Parents of 18-year-olds fear their children have been cut off from one program only to go to the back of the line for another. They don’t know what support they can expect next spring.
“The ministry is currently looking at the next steps and will be communicating with families in the very near future,” Sandy Mangat, spokesperson for the Ministry of Community and Social Services, said in an email last week.
Longtime advocates say SSAH once represented a vision of social inclusion for the developmentally disabled.
The reality now is “social exclusion,” noted a June report by the Special Services at Home/Passport Provincial Coalition, a group of Ontario families and agencies.
The province has said the changes are part of its “transformation of services” aimed at making the system more transparent and consistent.
“I want to be clear: we are not reducing funding for developmental services in Ontario,” John Milloy, community and social services minister, said in a recent statement.
He acknowledged the “tremendous demand” for supports and said Ontario has increased funding over the years.
However, it has not nearly kept pace with the need, with 12,300 eligible recipients on wait lists for SSAH and Passport funding, according to ministry statistics.
For young adults out of school, the lack of money and programs means their lives “are essentially ‘on hold’ ” leaving them vulnerable, marginalized and unable to reach their potential, warned a report last year by ARCH Disability Law Centre.
The paper questioned why the province didn’t invest the money it saved by closing large residential institutions over the last decade in helping the families providing care.
The $143-million currently supporting those families represents 8 per cent of the total developmental services budget.
In the meantime, Gloria Noseworthy is treading water. The $2,000 a year Zach received from SSAH this year meant she could hire an occasional caregiver, and cover the cost of summer day camp while she went to work.
Now her work is squeezed in here and there because there are no options for Zach.
It costs $15 an hour to hire a caregiver, and she earns a little over $12. She has no retirement savings.
Noseworthy is devoted to her son, but she’s stretched to the limit.
“People don’t realize what we are going through on a daily basis.”