January 1st 2009 to January 10th 2009
A compilation from the last week from email groups, others mailers and google alerts
Alliance for families with autism
Visit
www.autismnewsarticles.blogspot.com
to read archived mail
Thank you for your patience as I recovered from my major shoulder surgery in November. This is why you have not heard from AFA through this mailing.
Christmas with my three children with Autism was a real treasure-My non-verbal son said “Merry Christmas” (thought I would share)
Trish Kitching
From Sudbury Ontario, a FREE ABLLS workshop
Gatchell school council
Invitation to
Ablls curriculum workshop
And presentation on the alternative curriculum
at
Gatchell School
31 Tuddenham Avenue, Sudbury ON
OPEN to all parents of students on the autism spectrum at
rainbow district school board
Wednesday, January 28, 2008
630 pm - 800 pm
Gymnasium
Jana Duncan, Special Education Teacher will be our lead facilitator
Do you ever wonder where the goals come from in the Individual Education Plan (IEP)? Now is your chance to unravel the mystery and
get involved in the curriculum!
What is the ABLLS-R?
The Assessment of Basic Language and Learning Skills – Revised (ABLLS-R) is a device for assessing skills in children with language and learning deficits and is most commonly used in the process of developing a program for children on the autism spectrum.
What is the Alternative Curriculum?
Join us to find out!
Please Reply by January 21st
if you will require Childcare
Kindly RSVP to Iva McNair, Principal (by January 21st ) Telephone 674-1221
or email mcnairi@rainbowschools.ca or Jana Duncan duncanj@rainbowschools.ca
Directions from downtown Sudbury: Travel West on Lorne Street, turn right on Tuddenham Avenue- turn left at the stop sign at the top of the hill.
REMINDER
April 2nd is World Autism Day!!!!!!!!!!
Bringing some past to present to remind us how Autism is a gift.. thank you Carly..
Carly Fleischmann responds to W-FIVE doc
W-FIVE
Last weekend, W-FIVE aired a documentary on the life of Carly Fleischmann, a 13-year-old girl from Toronto with autism. She offered a rare glimpse into the secret world of autism and has become a symbol of hope for parents and families coping with an autistic child.
She is still unable to speak a single syllable. But two years ago, she defied the odds and started typing words with the help of specialized computer software.
After watching the W-FIVE report last weekend, she wrote this email to her father and her therapists.
Did you see the dad who walked to Ottawa
I want to walk to Ottawa
Because i don't want to be the girl known for spelling i want to help children like me
The priminister brain harper
But i can't take the train
I need to walk
It called making a statement
Duh
A thirteen yearold girl walks to Ottawa would make people want to meet with me
Not a thirteen year old who takes the train
I feel sorry for the boy who did not get people like you to work with him
I think i can help
But i need to walk
Maybe mommy will walk with me and then lots of people will then follow us down
I want to do it
Why don't you think they will let me
But why is it just them fighting for me
I can fight to
Im smart
Im going to ask mom if i can go
People will understand and join in my walk
I will go right to his house
I will sit on the snow and wait for him
I will tell him its time to help
What did dad say
Tell him i that i know but let me use my spelling and legs for something good ok
I can help
Im not a little girl any more
Thats what he said to me last night
http://groups.yahoo.com/group/autismsupportOttawa
Support Groups for Parents of Children with ASD: Predictors of Involvement
You are invited to participate in a study on support group use in parents of children with Autism Spectrum Disorders.
Researchers: Tess Clifford, MA (PhD Candidate), Patricia Minnes, PhD (Department of Psychology, Queen's University)
What do we want to learn? We want to learn about the experiences of parents of children with autism spectrum disorders (ASDs). We are especially interested in your experiences with parent support groups, and would like to learn how best to support all families of children with ASDs. If you are interested you will be invited to participate in an online parent support group.
How long will it take? There are 5 questionnaires that will take about 1 hour to complete, however, they can be completed at different times (over a one month period). Please be sure to complete ALL parts otherwise the data cannot be included in our study.
Who can participate? Parents or guardians of a child diagnosed with an ASD are invited to participate.
How can I participate? Click here to get more information about the study. Follow the directions on this page to register with ASD-CARC or login if you are already registered.
If you have any questions about this study, please contact Tess Clifford at 4tc29@queensu.ca.
Thank you for your interest!
Tess Clifford, M.A.
PhD Candidate
Clinical Psychology Program
Department of Psychology
Queen's University
--
Tess Clifford, M.A.
PhD Candidate
Clinical Psychology Program
Department of Psychology
Queen's University
4tc29@queensu.ca
From Autism Ontario
FYI:
Upcoming Education and Autism Spectrum Disorders Conference:
The registration deadline for the February 2009 Conference (Ottawa, Ontario): Educating Children with ASD: Theory to Practice, is fast approaching. A note of interest: Autism Ontario will be reimbursing families following their participation ($50.00/family maximum) who register for the conference on a first come first serve basis. Please see attached information and registration forms.
Autism Ontario – Ottawa, La société franco-ontarienne de l'autisme and the Autism Spectrum Program – Eastern Ontario extend an invitation to parents, professionals, educators and policy makers to attend the "Educating Children with Autism Spectrum Disorders: from Theory to Practice" conference February 18-20, 2009.
-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Je vous fais parvenir l'invitation encore afin de signaler que la date limite pour l'inscription approche vite. Veuillez noter que ''Autism Ontario'' remboursera les familles ($50.00) qui s'inscrivent à la conférence sur une base de premier arrivé premier.
Autisme Ontario – chapitre d'Ottawa, La société franco-ontarienne de l'autisme et Le programme du spectre autistique de l'est de l'Ontario invitent les parents, les professionnels, les éducateurs et les décideurs à participer à la conférence « Éduquer les enfants présentant un trouble du spectre autistique : de la théorie à la pratique » du 18 au 20 février 2009.
Afin de nous aider à atteindre le plus grand nombre d'individuels on vous demande de bien vouloir transmettre cette invitation à vos collègues et familles dans l'espoir qu'ils seront en mesure d'y assister.
Si vous avez besoin de plus amples renseignements, n'hésitez pas à communiquer avec nous.
<
Gabrielle Nadeau
Senior Administrative Assistant
Adjointe administrative principale
Autism Intervention Program - Eastern Ontario
Programme d'intervention en autisme de l'est de l'Ontario
1661, chemin Montreal Road
Ottawa, Ontario K1J 9B7
Tel/Tel: 613-745-5963 or/ou 1-877-542-2294
Fax/Telecopieur: 613-745-9237
e-mail/couriel: nadeau@cheo.on.ca
WITH ATTACHMENTS
FROM Nancy’s list
I have been offline for a few weeks, we have had many challenges in our home, and I also got hit hard by the flu bug and was bedridden for a few days this week. So here is a message with all the outstanding info from the past few weeks,
Happy New Year,
Nancy
--------------------------------
A great opportunity for GTAers, a course being offered at George Brown College, free of charge, Behavioural Tools for Parents. See attached flyer, and this was also sent from a listmate:
We have arranged two 8 week courses (free of charge, courtesy of George Brown) for parents running weekly on Tuesday evenings. The first course started on Tuesday but there is still room for another several families.
If you could post it so that interested families could apply, I would appreciate it.
----------------------------------
Just after sending out my last mailing, a listmate shared this with me..... very important info regarding the RDSP deadline:
BMO was the first to start RDSPs as of two days ago, with only 9 days to take advantage of the first year's grant and bond. This made no sense to me so I called BMO's RDSP 800 number (from my holiday!!) and found out that you have until March 2, 2009 to open the account and apply for grants that will apply to the 2008 tax year. This is similar to RRSP deadlines. I am not sure if this applies just to this year or all years but at least those individuals who worried about losing the benefit of the first year due to time constraints need not be concerned.
-------------------------
And this was also posted on the OACR's website:
Federal government extends RDSP submissions
Families have until March 3, 2009
Wednesday, January 07, 2009 -- Camille Jensen
Families now have more time to make a contribution and apply for the matching grant and income-tested bond for the 2008 Registered Disability Savings Plan (RDSP).
The extended deadline was announced at an event celebrating the national availability of RDSPs, which was introduced in the 2007 federal government budget.
“The government announced RDSPs in Budget 2007 to help parents and others set aside funds today to financially support a child with a severe disability when they are no longer able to provide support," said Minister of Finance Jim Flaherty in a statement.
"I am very pleased that this long-term financial support is now available and I congratulate the Bank of Montreal for being the first major bank to offer RDSPs.
"To ensure that as many individuals as possible can establish an account and be eligible for a full year of the Canada Disability Savings Grant and the Canada Disability Savings Bond, we are pleased to announce a two month extension to the 2008 deadline for opening an RDSP and applying for the 2008 Grant and Bond."
The 2008 contribution year has been extended to March 2, 2009 from the Dec. 31, 2008 deadline. The 2009 RDSP contribution year will begin March 3, 2009.
The RDSP is a tax-assisted savings plan. Contributions to an RDSP will not be deductible and will not be included in income when withdrawn. Investment income, grants and bonds are included in the income of the beneficiary when withdrawn from an RDSP.
Contributions under the new RDSP will be matched by Ottawa up to a maximum of $4,500 a year based on the family's net income. While the contributions are not tax free, the interest earned is not taxable.
Al Etmanski, president of the Planned Lifetime Advocacy Network (PLAN), an organization which advocated for the creation of RDSPs, congratulated the government for creating a vehicle that will assist families in planning for the long-term financial security of their relatives with disabilities.
"On behalf of families from coast to coast, the Planned Lifetime Advocacy Network would like to thank the Government of Canada for its leadership in implementing an RDSP, the first of its kind in the world," said Etmanski, president of PLAN.
"With my daughter, Liz, I have been eagerly awaiting this announcement. Aside from ensuring the financial well-being of our sons and daughters, the Government of Canada is sending a major signal to Canadians with disabilities and their families — ‘we know you have extra expenses; we know you want to participate and contribute to society; we trust you to decide how best to do this.’"
PLAN has launched a new website with information relating to the RDSP, including financial updates, provincial treatments, details and analysis, stories and the new RDSP Calculator.
-----------------------
Jonathan Howard has finished his cross Canada marathon in support of those affected by autism. He raised awarness and funds from Newfoundland through to British Columbia. I can think of no better way for our community to let Jonathan know how much we appreciate his efforts than particiapting in the CBC's Next Great Prime Minister Youth Election, and voting for Jonathan. Here is the link to his page on CBC, please take a moment to place a vote for Jonathan:
http://www.cbc.ca/nextprimeminister/candidates/jonathanhoward.html
Published in Langley BC:
Athlete Running the Dream
2008/12/19
Craig Spence
After running 8,000 kilometres and passing through 650 communities, Jonathan Howard brought his dream to James Kennedy Elementary School Dec. 15, raising funds and awareness for people with autism.
Jonathan Howard talks to students at James Kennedy Elementary School Dec. 15
After running 8,000 kilometres, passing through 650 communities and wearing out 15 pairs of shoes. Jonathan Howard brought his dream to James Kennedy Elementary School Dec. 15.
Mr. Howard, a resident of Mississauga Ontario, left St. John’s Newfoundland in March and has been running a marathon a day as a fund-raiser and awareness raiser for people with autism. He had just 115 kilometres and four days to go in a journey that would end Dec. 18 at Mile Zero of the Trans Canada Highway in Victoria BC.
“Someone told me once to dream as though you’ve never failed,” he told the students. “The most important thing to learn about yourself is to follow your dream.”
He thanked the school for inviting him to do his presentation. Wendy Durnan, who has a son with autism and who helped organize his school visits in the Lower Mainland, introduced Mr. Howard. Her daughter Kaelynn presented him with a CD produced by the family while siblings Christian, Brendan and Meaghan looked on.
Principal Robin Mott emphasized the importance of Mr. Howard’s achievement and his message. “The fact that we’ve had Jonathan Howard here today should really make a difference to you. Think about it: a marathon every day!”
As hard as it was for him to complete his cross-Canada trek, Mr. Howard said it’s even harder for those who live every day with autism. “It’s all about raising funds for autism,” he said. “There’s a lack of understanding about what it is.” His goal was to raise 10 cents for every Canadian to fund services and research into autism, but Mr. Howard noted it was just as important to educate people about Autism Spectrum Disorder, and about the difficulties people with disabilities face.
Langley School District’s Coordinator for Autism Spectrum Disorder Diana Wilk agreed after Mr. Howard’s presentation that there is a lack of understanding around autism issues. Langley staff receives training from the Provincial Outreach Program for Autism and Related Disorders (POPARD).
Ms. Wilk noted that there are excellent resources for anyone wants to learn more about the disorder at the POPARD outreach site: www.autismoutreach.ca/. The site’s introductory page notes that the symptoms of autism include impairment of social interaction, deficits in ‘expressive and receptive verbal and non-verbal communications and ‘atypical stereotyped or repetitive behaviours’.
Mr. Howard noted that he has met hundreds of people with autism across the country, and that the experience has taught him to empathize with them. “Can you imagine when you’re hungry not being able to say ‘I’m hungry?’,” he asked the students.
But he also learned that people with disabilities have dreams, too, and they can show the same kind of spirit that Mr. Howard himself showed in his 10 month odyssey. Paralympian Terry Robinson joined Mr. Howard in Ottawa and travelled 2,750 kilometres during a three month stint on the Run the Dream tour - all the way to Winnipeg.
That proves a point Mr. Howard wanted to make. “I want to show that when you have support and services you can do anything,” he said.
----------------------------
A nice awareness article from CTV:
Autistic boy helps launch charity to help homeless
Updated Wed. Dec. 24 2008 9:13 AM ET
CTV.ca News Staff
A seven-year-old autistic boy is trying to make this Christmas a special occasion for the homeless in Western Canada.
About two years ago, Stephen McPhee heard about a news story describing homeless people near his family's Calgary-area home and decided that he wanted to help.
Stephen doesn't talk a lot, so he didn't waste many words describing what he felt and why he knew he had to do something.
"I just don't like it when they're on the street," Stephen told CTV.ca during a Christmas Eve interview.
That's exactly what he told his mother, Nancy McPhee, and the family decided they would help Stephen take action. So, they loaded backpacks stuffed with Christmas gifts and distributed them to needy families around their city.
The backpacks include essentials -- mittens, hats, clothes -- that the homeless and their families need, but they also have items such as crayons and toys for the kids.
That first year, they were able to load 15 backpacks for the needy, distributing them with the help of local charities. But Stephen's mom says the little boy knew they could do more. The next year, he told his mother he wanted to distribute 150 backpacks.
Nancy McPhee said she told her son that his goal was quite a bit more than their original 15. Undaunted, little Stephen had the perfect response, she says.
"Mummy, you have to dream out loud," Nancy said he told her, describing the boy's enthusiasm about the project.
On his website, Stephen describes how his charity grew.
"I wanted to make more so my sister helped me write a letter and tons of companies and people in Aridrie (Alberta) helped make over 265 backpacks," Stephen wrote.
"Every backpack had a huge bow and lots of neat toys and mittens and school stuff inside. We had fun in a donated school bus taking them to Inn from the Cold on Christmas Eve."
This year, his charity -- Stephen's Backpacks Society -- will distribute about 1,000 backpacks. They now have about 100 corporate sponsors and more than 100 volunteers throughout Alberta to help them.
Nancy McPhee has even written a book -- aptly titled "You have to Dream Out Loud" -- to raise more money for the working homeless and their families.
She says Stephen's generosity has captured the hearts of his neighbours and many others throughout Alberta.
"It's crisp and it's real and it's a very strong message," she said, adding, "I think Stephen tells it well. Let's just do it."
---------------------
Another nice awareness article from the York Region papers:
Guided By Love
Julie Donner Anderson
Published on Dec 29, 2008
Andrew and Verdie.
Although his new family member Verdun, or Verdie as he was nicknamed, has bad breath and a shedding problem, Andrew Tremblay couldn't be happier.
After almost three years of waiting for his arrival, the boy is thrilled the black Labrador retriever is finally home to stay.
Verdie is a graduate of the National Service Dogs program, a registered charity in Cambridge, Ont. that provides guide dogs to families of Canadian children two to eight who, like Andrew, have autism spectrum disorder.
ASD children have a tendency to bolt, making safety a concern for parents, so NSD dogs are trained to help these children safe in public and keep them from wandering in a classroom environment. The dogs also facilitate socialization of the child with society and provide a therapeutic calming effect while bonding with their small masters.
Andrew's story began in 2005 when Martine Tremblay, his custodial grandmother, read a newspaper article about NSD and how autistic children benefit from guide dogs.
She applied the same day, but Martine was told the waiting list was between two and three years. The dogs are free to accepted applicants, but fundraising is strongly encouraged to cover the $12,000 it costs to raise and train the dog and applicant.
"I owe The Banner a debt of gratitude," Ms Tremblay says of the community newspaper. "After they printed an article in 2006 about my desire to acquire a service dog for Andrew, the community rallied. The Lioness Club of Newmarket read our story and raised $8,000 through a charity dance and silent auction that year."
Queensville Public School (where Andrew attends) also held a fundraiser garage sale and donations came in from local businesses, including Di And I Hair Salon, the shop Ms Tremblay co-owns, which hosted a doggie shower ¬¬- kind of like a baby shower, but with rawhides and dog treats instead of diapers and bottles, she adds.
What touched Ms Tremblay most were the donations from children.
"Two little boys came into the salon with their dad and donated fistfuls of coins from their allowance," she says, choking up with happy tears. "I am so grateful to everyone in this community who gave from their hearts, whether it was money, publicity or just their kind words of support."
During the wait time, when applicants are busy raising funds, NSD puppies, which are almost all Labrador and golden retrievers bred by NSD, start their journeys to become working dogs.
First, the puppies stay with foster families for 12 to 14 months. While in foster care, the puppies are screened for aptitude and qualifications. A foster family is instrumental in teaching the dog simple commands such as "sit" and "stay," as well as walking on a leash, keeping clean in the house and toileting routines.
Puppies that do not qualify are usually adopted by their foster families or trained as companion dogs for other special needs children who do not have safety issues.
Those pups that pass the foster care regimen are trained at the NSD facility for four to six months, where they learn to wear a vest-like jacket when working. The vests identify them as service dogs on the job.
During this intense training, applicants are required to be trained as well.
At the end of September this year, Ms Tremblay spent a week at the NSD facility, training alongside the dog and learning how to give commands.
"It was intense, but gratifying," she say. "The dogs were with the families 24/7. They even slept in the hotel rooms with each of us."
"While they are working, the dogs are actually tethered to the kids," NSD co-founder and director of business development Danielle Forbes says. "We take applicants and their dogs out in public the entire week. The dogs work with the families in keeping the child safe at all times."
NSD dogs are trained, using a reward system, to sit and stay at every corner and obey the commands of the parent. Thus, if a child is tethered to the dog, he isn't going anywhere.
For parents of children without bolting issues, tying a child to a dog may seem a little restrictive, but it actually gives the child and the family more freedom. Many families actually do not go out in public if they have a child who runs because it's just too stressful. With an NSD guide dog, the child doesn't have to hold a parent's hand at all times and even a casual stroll down the sidewalk becomes more enjoyable.
Once the week of intensive dog/applicant training at NSD is complete, the successful dogs go home with their new families.
"It's a very small number, but not all dogs work out," Ms Tremblay says. "Still, NDS makes sure every family accepted into the program eventually gets a dog. NSD supports the child to adulthood. Sadly, dogs die, and if an NSD dog does, it will be replaced free of charge until a child is 18." Even when a dog retires, the family can adopt it as a pet and a new dog will be introduced as the working dog.
NSD also helps integrate the dog with the child's school. Meetings are conducted between parents, NSD facilitators, teachers and the principal. When it is time for the dog to accompany the child to school, NSD holds an assembly with the whole school to introduce the child and the dog. Children learn quickly the dog in the purple vest is working and cannot be touched or played with.
When Verdie is not on duty, he is simply Andrew's buddy, playing together on the trampoline and swimming in the pool. Bonding between child and dog is essential and begins with teaching the child how to care for the animal's needs, such as feeding, grooming and veterinary appointments. The child also learns the dog cannot be given "people food" so it won't be tempted to eat schoolchildren's lunches.
Although Verdie's official NSD training is complete, with the facility's support, Ms Tremblay plans to teach the dog American sign language, just as she taught her grandson.
"Andrew in non-verbal and communicates through signing," she says. "He's already trying to teach Verdie the signs for 'come here and love me'."
When it comes to a boy and his dog, the signs of love are already evident. Andrew will not go to sleep without Verdie at the foot of his bed and Verdie wouldn't have it any other way.
- Julie Donner Andersen is a freelance writer and local author of two books. Her website is juliedonnerandersen.com
------------------------
And yet another great awareness article from the Hamilton Spectator:
Lacey bloomed at summer camp
Autistic, deaf girl became counsellor
Carmela Fragomeni
The Hamilton Spectator
GLANBROOK (Dec 31, 2008)
Lacey Ouwehand's annual summer camp experiences had such an impact, she is a now a junior camp counsellor -- not an easy feat, since Lacey is autistic, obsessive compulsive and deaf.
Lacey, 20, spent two weeks every summer since she was 12 at the local YMCA summer day camp downtown and at Camp Chippewa at Christie Conservation Area. Through a program called Helping Hands, she had a counsellor dedicated solely to supporting her each day.
The camp did wonders for a shy Lacey. She learned to be more social in a positive way and to better control her obsessive compulsive behaviour, says her mother Janet.
The camp held Lacey's interest because campers were always busy doing something different every day and she made new friends. She learned new skills such as swimming, and discovered she likes archery, said Janet.
She also taught the younger kids sign language.
"If she didn't go to camp, she wouldn't be able to reach out to people like that."
Each year, Lacey gained more independence until she now helps other children.
Last summer, Lacey instilled confidence in a shy and withdrawn four-year-old boy who was also hearing impaired, says Bryan Webber, vice-president of financial development with the YMCA of Hamilton/Burlington. "I thought that was a remarkable influence to have on a little guy."
But Lacey could never have attended the camps if not for the local United Way, which funds the cost of one-on-one counsellors. Janet says she couldn't afford the hundreds of dollars necessary to provide this kind of support.
"If she didn't have the camp or school, she wouldn't be who she is today. She's grown up, matured ... she's come a long, long way."
The United Way of Burlington and Greater Hamilton provides the Y with $240,000 a year to enable children and youth to attend programs their parents can't afford, said Webber. Of that, $15,000 goes for children with special needs to attend the regular Y camps.
"Without the United Way, we can't provide the one-on-one counsellors," Webber said, adding the program helps about 20 to 30 kids a year like Lacey.
"So the United Way has been an important partner. Look at the impact -- Lacey went from being in her own shell to coming out and helping others. It's amazing."
The United Way is about 20 per cent short of its current target with about a month left in its campaign.
cfragomeni@thespec.com
905-526-3392
---------------------
This article appeared in the Star regarding the changeover from institutional settings to group homes for adults with developmental disabilities:
Residents adjust to living in group homes
YVONNE BERG FOR THE TORONTO STAR
Wendy Sayer, 63, loves to choose her nail polish colour at O’Brien House, a group home for 10 intellectually disabled adults in Shanty Bay near Barrie.
The end of an era
It's the end of an era.
Advocates for the intellectually disabled are cheering as Ontario moves to close its last remaining institutions, following the example of Newfoundland, British Columbia and New Brunswick.
"It's an extraordinary victory for people with intellectual disabilities in Canada and internationally," says Michael Back, executive vice-president of Canadian Association for Community Living.
"Society needs to come to grips with the history, the injustices and the abuse of institutions," says Bach. He compares the situation to the abuses experienced by native Canadians in residential schools.
In 1970, Canada had a whopping 33,000 people in facilities for the intellectually disabled (formerly called mentally retarded) with the majority being in settings of 100 people or more, he says. Today, the total in the country is about 2,500, with more places preparing to close. It's estimated that roughly two per cent of the total population have an intellectual impairment ranging from mild to profound.
"We've made a definite difference in 35 years," says Bach, adding the next challenge is to truly integrate those with intellectual disabilities in the day-to-day activities of the broader community.
"Most people have not found common humanity with people with intellectual disabilities."
Trish Crawford
Used to large institutions, intellectually disabled and their families adapt to group homes
December 27, 2008
Trish Crawford
LIVING REPORTER
Wendy Sayer is methodically counting her money, picking up each coin from her bedspread and putting it in her little change purse.
She does this a couple of times a day and enjoys the sound of cash jingling in her purse when she heads off on an outing.
Partial to coffee and doughnuts, Sayer has hit many Tim Hortons and Second Cup coffee shops near her new home in Shanty Bay, about a 15-minute drive from either Barrie or Orillia.
In many ways, her daily routines haven't changed much since she moved to O'Brien House, a group home for 10 intellectually disabled adults late in August. Back in Orillia's Huronia Regional Centre, where she lived for most of her 63 years, she also bought coffee in the tuck shop, helped with the laundry and went on many outings in search of sweet treats.
What's changed now is that Sayer has her own bedroom, which is filled with her own furniture, and she is part of a much smaller group of people than in the past. From living among thousands of similar souls, Sayer now shares space, grounds, staff and activities with only nine others.
Whereas the government of Ontario once had full responsibility for her health and care, now a non-profit community agency called Simcoe Community Services is responsible for her well-being. The era of on-site doctors, dentists, hearing and sight specialists is over and she must visit area physicians for her regular blood tests and other care.
Ontario has been speedily moving toward closing the last three institutions for the intellectually disabled by its target date of March 31, 2009. At one time, more than 6,000 people lived in the three mammoth facilities in Orillia (Huronia), Smith's Falls (Rideau Regional Centre) and Blenheim (Southwestern Regional Centre). Today, only 36 people remain in two institutions. .
Whereas institutionalization was once the only option for families with intellectually disabled children, now it is no option at all.
For the past four decades, a growing number of families have chosen to raise their disabled children at home. With few new residents, the population at the centres got older and deinstitutionalization has primarily involved the placement of aging residents (average age 51) with the attendant physical and social difficulties of advancing age. Of the 905 residents who moved into the community by November 2008, 28 have died and 56 have moved into long-term care facilities.
This is a worldwide movement and Ontario is just one of hundreds of jurisdictions which have rejected large institutions in favour of small community settings.
It has not been without controversy, however. Sayer's family, for example, was part of a parent group that took the government to court to stop the closings. In the end, the court ruled that the province could close the institutions but stipulated it must provide placements satisfactory to the residents' families, or return to court.
Lyz Sayer, 60, Wendy's younger sister, says her greatest concern was that her sister would not get the medical care, staff attention and social interaction she needed and had received at Huronia.
"I wanted some place larger. She was brought up with a lot of people around her; she is very social. I didn't want her locked in a house in the suburbs. The more residents you have, the more staff you have."
Sayer says Huronia set the gold standard for care and was better than most group homes.
The requirement for family approval meant that Sayer's insistence on a large, rural setting and gradual transition were met and she is delighted with the home.
"We got to put our foot down as to where Wendy went," she says.
This didn't come cheap. Ontario will spend $1.5 billion in 2008/2009 for developmental services.
Roughly $100,000 per resident was provided in capital funding so agencies could create more space for those leaving institutions, resulting in a building bonanza for some agencies.
"They built a house for us. It's really amazing," says Douglas Graham, 86, who describes his son Richard, 59, as "profoundly retarded and deaf."
His son had lived in Rideau Regional Centre for 46 years and Graham had also gone to court to stop the closing of that facility.
Later, accepting the inevitable, he set out to find a rural area for his son to live in and was pleased by the operations of the small Community Living North Grenville, which proposed building a new house in Kemptville to house Richard and three roommates who would move together.
The four men got taken on frequent trips to the building site, says Graham, adding that Richard was among the first to leave Rideau in its last push to be emptied of residents. "It is a lovely home with every convenience. He is doing very well."
These types of conversions are common, say experts in the field, if transition planning is done well and parents get to have their voices heard.
"It is heartwarming to see these parents come on board," says Madeleine Meilleur, minister of community and social services, who has visited many group homes in the past few years. "They were afraid because of the unknown."
Ted Shuh, executive director of North Grenville, says his agency, which supports 115 people with intellectual disabilities, took 18 former residents of Rideau. It handled the increase by building one house and buying a duplex. These buildings are permanent resources that will last after the residents die, he points out.
"Facility dollars come and stay in the community."
Over in the Essex county, near Windsor, similar building occurred, something that was affordable for more rural agencies but difficult to do in places such as the GTA where land prices are higher.
Nancy Wallace-Gero, executive director of Community Living Essex County, says over the years her agency was able to take 40 former residents of the southwestern Ontario facility which now sits empty. They were able to build four homes and construct additions such as self-contained en suites for existing homes.
In Essex, the provincial government provides operating expenses of about $75,000 per resident (within the institutions the costs were about $100,000 per resident). It was challenging to meet all of the needs in the community, admits Wallace-Gero, citing the cases of severe behavioural problems.
Time and time again, she says, behaviour issues diminished once the person left institutionalized care. Also, she adds, residents needed less medication and interventions once in their new homes.
"It's all about the quality of life and the wonderful opportunity to live in the community," says Wallace-Gero, who grew up in a family of 12 children, two of whom had intellectual disabilities. As a young girl, she remembers her family visiting a regional centre where their two disabled foster children were scheduled to move.
"They came back and said, `We can't allow them to go there. What are we going to do? We have to protect them,'" she recalls.
As a result, the family adopted the two children and inspired Wallace-Gero to help others with disabilities live in the community. However, she acknowledges it has been a leap of faith for families who believed that institutional life provided more services.
"We had families who were very concerned, who were so against it, and now those same families are very happy."
Greg Cavers, 47, remembers the day his uncle Bob Cavers, 67, moved into his group home in Cotten, Ont., 2 1/2 years ago.
"You should have heard his language when he moved. I knew he was angry. He wasn't the sweet Bob I knew," says Cavers.
Put in charge of his uncle's affairs, Cavers was shocked to read his grandmother's direction that Bob, who has cerebral palsy, should "never go to a group home."
Although the regional centre "was spotless and vibrant" when Bob first moved there 25 years ago, its proposed closing had led to fewer resources being put into the place in recent years, says Cavers. Bob went downhill.
"Back in the day, he had been vibrant and talking. But, in the past 10 years, he had been in decline, mostly a silent state."
Moving into a house with three other former residents of the centre has changed all that, Cavers says.
"It's miraculous. I can't say enough about the situation. He's close to home, he has the same doctor, dentist and optometrist as me. We just got back from his Christmas party. Bob has a better social life than I do."
When Kevin Boyle's father died, his mother had to find a job and subsequently put his brother, David, now 49, in the Southwestern Regional Centre.
"Thank God, the institution was there," says Boyle, 47.
Although he is grateful for the excellent care his brother, who has cerebral palsy and uses a wheelchair, received at the centre, Boyle says the new situation is an improvement. He now lives with three others in a home in Tecumseh.
"I wish it had been available years ago."
The range of activities has greatly increased in the smaller setting, he says, adding, "David got on a plane last year and went to Florida to visit his mom. The staff went, too.
"It was a wonderful thing."
________________________________________
But not all families are happy . . . . .
Huronia Regional Centre once housed more than 2,500 people with intellectual disabilities. Today, it is virtually an empty shell on the sprawling lakeside property in Orillia, home to only six residents.
But those last six are not leaving without a fight.
Sofia Papagiannis, whose autistic son Peter, 40, has lived there since he was 7 years old, is unhappy with the few options being offered her son. She says she has only been shown one group home in Toronto, which was crowded and unsuitable for her son.
She refused to visit a second group home in the far west end of Etobicoke, explaining it would be difficult to visit her son that far away.
"We are getting older not younger," the Greek immigrant says. A family friend picks Peter up each weekend and drives him to Toronto for visits.
Sitting at their dining room table in North York, surrounded by binders and folders filled with documents about Peter's life, Sofia, 63, and John Papagiannis, 73, wonder what happened to the promise that families would be involved in their children's transition to the community and that they would get final approval on placements.
Stories of homes being built for former residents and multiple housing situations being offered seem like fairy tales to the Papagiannis family.
"They are saying take it or leave it," says John, a bartender.
Sofia has researched other community resources and asks to be given more options, she says. "We see lots of places around Toronto with lots of activities," she adds.
The provincial government, which controls the transfer process, replied that she should see a lawyer. Under a judicial ruling, the provincial government must return to court for approval in situations where the families refuse to sign off on any transition plan.
Families of the other five residents, three men and two women, declined to be interviewed because of pending litigation.
Peter's parents have spent their entire lives fighting on his behalf. They say an intellectually disabled child is a child forever.
Everything was fine until Peter appeared to suffer a seizure when he was 9 months old. In the end, no one knows what happened but Peter, who had been eating food, could only drink milk or juice for many months. He didn't take his first step until he was 2 years old and he still doesn't talk.
Peter likes to go for car rides, says John. "He knows I'm his daddy. He knows when it is Saturday – he is happy and singing. He puts his hands in my pocket for the keys to the car. He tries to open the car."
They wonder if the steam has gone out of the government's drive to find the best possible placements as the numbers dwindle to the final few.
Madeleine Meilleur, minister of community and social services, declined to comment on the situation.
------------------------
This is a great article from Lindsay Moir - remember his words to ensure you let your Principal know of the needs of your child in regards to why they need full time support:
Ask Lindsay Moir:
EA Allocation
Friday, January 09, 2009
Question:
I'm a teacher and a parent of a child with exceptionalities. Recently I was at a meeting where this was said aloud: "even if the child is allocated EA support, the EA is allocated to the school and the school can use that EA allocation as they see fit."
This translates into children with EA allotment receiving no support and children who have "safety issues" but no "paperwork" getting support.
Parents bend over backwards to get assessments done and if the child is quiet and not a problem they may not get support.
Can school boards, and more specifically schools, really take allotted EA support from one child and give it to another? I find this very unethical.
I selected this e-mail because I have had several calls this week regarding "migration" or re-allocation of EA resources after the Christmas holidays (or for semester 2 in high school) I will incorporate some of these calls in my response.
Answer:
EA Ownership.......always a difficult thing to explain! Generally speaking the exceptional child does NOT have the right to an EA, but they do have the RIGHT to have their needs met.
Two of the problems that arise frequently are:
Schools often allude that the parents need specific assessments or diagnoses to get an EA (NOT TRUE) and therefore the parents seek out and often pay for, extensive assessments and get a diagnosis — and then expect this to guarantee the EA.
While testing and diagnosis can be helpful in determining the needs, they are NOT a passport to an EA for a child! This is why we need to spend a lot more time clarifying NEEDS — NEEDS draw resources.
Parents invest a lot of personal time and their own resources, training an EA to have the skill set to work with their child. In one case, they created an excellent behavioural resource for the board. Everything was well-managed for their child — so well managed that the EA was moved to work with an "out of control" child, leaving the original child with no support, and sudden regression to "old behaviours." Even if another EA is assigned (not happening yet) there will be a huge training gap, AND a frustrated parent!
Often in workshops I make a "Shock Statement" which becomes a base for discussing this issue. I say, "In over 40 years in special education, I have NEVER met a child who needs an EA!"
After everyone has calmed down, I go on to explain that an EA is a response to a NEED, not a NEED in itself!
An EA is one of the ways that a school can meet the child's need (and if no EA is available, then the principal is not off the hook — he/she has to find another way to meet the need).
This has been a successful strategy over the years — "WHAT needs to be done, not WHO does it."
Skill set and training are always an intricate part of the staffing plan (or SHOULD BE). Whether the "training" is informal, from family support worker, therapist or parent, or formal from a college program, in some cases this knowledge is critical to success with the child. In other situations, general knowledge is all it takes! In some cases, transitions are difficult, and any change needs to be carefully managed to prevent regression.
In others, change is easily accepted by the child. One-size does NOT fit all. A person cannot provide sign language of they can't sign. A person can't provide physical support if they can't lift. A person cannot provide behavioural support if they have no behavioural training. SENIORITY only applies if two candiddates have equal qualifications.
For most parents, whether the support comes from an EA, a placement student, or a trained volunteer does NOT matter. The attitude of the educators and the support person is a BIG deal to most of us!
I agree that the child who is compliant, accepting and will just "veg out", often gets a lot less support than the behavioural child! It is essential that their advocate (parent or community worker) stressess the NEEDS that are not being met (UNACCEPTABLE) and insists that the school provide the necessary support.
The Education Act does not guarantee any pupil an EA — section 170(1)7 does guarantee them the support to meet their needs.
----------------------
A listmate shares this and encourages everyone to help out her contact with this study:
Support Groups for Parents of Children with ASD: Predictors of Involvement
You are invited to participate in a study on support group use in parents of children with Autism Spectrum Disorders.
Researchers: Tess Clifford, MA (PhD Candidate), Patricia Minnes, PhD (Department of Psychology, Queen's University)
What do we want to learn? We want to learn about the experiences of parents of children with autism spectrum disorders (ASDs). We are especially interested in your experiences with parent support groups, and would like to learn how best
to support all
families of children with ASDs. If you are interested you will be invited to participate in an online parent support group.
How long will it take? There are 5 questionnaires that will take about 1 hour to complete, however, they can be completed at different times (over a one month period). Please be sure to complete. ALL parts otherwise the data cannot be included in our study.
Who can participate? Parents or guardians of a child diagnosed with an ASD are invited to participate.
How can I participate? Click here to get more information about the study. (https://sites. google.com/ site/ASDParentSu pportGroupStudy) Follow the directions on this page to register with ASD-CARC or login if you are already registered.
If you have any questions about this study, please contact Tess Clifford at 4tc29@queensu. ca.
Thank you for your interest!
Tess Clifford, M.A.
PhD Candidate
Clinical Psychology Program
Department of Psychology
Queen's University
https://sites. google.com/ site/ASDParentSu pportGroupStudy/
-------------------------
A listmate shares about a new centre for services for Simcoe County:
We are a non-profit agency servicing children with a wide variety of special needs. Children seeking services do not require a diagnosis to obtain services with us. We service children 0-18 yrs. We have Centres in both Aurora and Barrie. We offer both Centre Based services as well as services provided in the home, school, daycare and community.
Our program offering includes: Early Learners Step 1 (Toddler Group Program), Early Learners Step 2 (Pre-school Group Program), IBI/ ABA and Verbal Behaviour Programs, Social Skills Program (teaching how to navigate the social world), and Play Skills Program (looking at teaching imaginative and pretend play). We also offer distance supervision for families who wish to hire a team a therapists directly but required clinical supervision and training for parents and team. In addition we offer Assessment, Case Management and Consulting Services, and Parent and Professional Workshops on a wide variety of topics.
The link to our website is www.providencelearningcentres.com
------------------------
And this is a US article, but relevant to all of us:
Study Shows Increase Is Real, Not Just Due to Changes in Diagnosis Criteria
By Daniel J. DeNoon, WebMD Health News, Reviewed by Louise Chang, MD
Environmental factors may be partly behind California's eightfold rise in new cases, a new study implies.
Many researchers have believed that the continuous increase in autism cases over the last decade -- particularly the huge increase seen in California -- isn't real, but can be explained by "artifacts."
Among these artifacts are the recent broadening of the diagnostic criteria for autism and greatly increased diagnosis of autism at younger ages. Both these factors could make it seem like there are more autism cases than there were before.
These artifacts do explain part of the rise in autism cases, shows a rigorous study by Irva Hertz-Picciotto, PhD, MPH, chief of the division of environmental and occupational health at the University of California, Davis.
But even taken together, they don't explain even half of the huge increase in cases.
"When you put it all together, this doesn't come close to explaining the increases in the last 10 years," Hertz-Picciotto tells WebMD. "The more you whittle away at this increase, the more you have to say that what is left over is real. ... Given that autism cases keep going up, and can't be fully explained by artifacts, environmental factors deserve serious consideration."
Hertz-Picciotto notes that her study does not account for one potentially huge artifact: The fact that today's parents are vastly more aware of autism than they were a decade ago.
Autism can't be diagnosed unless you're looking for it -- so parent awareness has a huge potential effect on the rise of autism, says Gary W. Goldstein, president and CEO of the Kennedy Krieger Institute and professor of environmental health sciences at Johns Hopkins University.
"There is an enormous increase in awareness. Everybody knows about autism now, and they didn't 16 years ago," Goldstein tells WebMD.
"The awareness thing is very hard to quantify," Hertz-Picciotto says. "But at some point, as more and more parents became aware of autism, the increase should have leveled off. Instead we see a continued increase in autism."
Hertz-Picciotto notes that the lion's share of autism funding is going to genetic studies. She argues that it's high time more effort was put into looking for environmental factors that cause autism in genetically susceptible individuals.
"Time is passing and science has a lot to do to find the real causes of autism," she says. "A lot has changed in the environment over the last 10 to 15 years. And I paint with a broad brush when I say environment: These changes include things like medications people take and assisted reproduction technology as well as what is in soaps and pet shampoos and toothpaste and so forth."
Autism expert Michael L. Cuccaro, PhD, associate professor of human genetics at the University of Miami, praises Hertz-Picciotto's systematic study of the rise in autism cases. He agrees with her that it's time to consider environmental factors as part of the cause of autism.
"I don't think it is premature to look for environmental risks," Cuccaro tells WebMD. "There are environmental risk factors that give rise to a wide range of developmental conditions, and there's no reason to think autism isn't one of them. And papers like this are critical to get to this point. Because you have to convince people it is not explained by all these other factors."
Environmental studies are already under way -- and research organizations are eager to fund them, Goldstein says. But the difficulty goes far beyond funding.
"We only have 20,000 to 25,000 genes. But we have a hundred thousand environmental exposures. How do you control for that?" he says. "And your genes stay the same, while environmental exposures may have come and gone. It is difficult to do these studies -- the problem is not that it isn't thought to be important."
The Hertz-Picciotto study appears in the January issue of Epidemiology. The study is co-authored by Lora Delwiche
Autism Sweatshirts are on Sale!
On a Personal Note...
I cannot help but share my excitement with my "online community", but this week Matthew has started talking in school again! He quit talking at school in October of 2007 and until this past Monday had not uttered a sound since. (he makes plenty of noise at home - singing, spelling words, quoting his favorite shows, etc) Through lots of hard work and trying many, many approaches - he finally opened up again. We are so thrilled that I just had to share it with everyone - it's the little things in our lives that make such a big difference.
Click here to see my January Specials!
________________________________________
Canvas Totebags are on sale!
NOW ONLY $10.00! Lots of great new sale items for the New Year!
Swarovski Crystal Bracelet
ON SALE FOR $28!
ALL Sweatshirts are on sale for January!
Youth Sizes are $16.00. Adult Sizes are $18.00
From Autism Today
Breaking News: 1-6-09
Long time friend and presenter for Autism Today conferences, Keri Bowers has been invited to be interviewed by Access Hollywood and Extra, related to the Tragedy with Jett Travolta and his unfortunate passing. Our prayers and condolences to the Travolta family. Keri has worked closely with Joey Travolta over the past years in the development of her films: "Normal People Scare Me".
Please go to Autism Today to read the story.
Sincerely,
Autism Today
news@autismtoday.com
Exceptional Resources
1425 Broadway
#444
Seattle, WA
98122
US
From taline
There is quite a bit of information through the new site: http://www.canadianswithdisabilitiesact.com/
This has been an issue in discussion for over ten years now and it is time that the vision comes to fruition. Please go through the new site and complete and send off the template forms and pass on to others, including groups and individuals representing other disabilities. There is also a link in the site to the facebook group. A CDA would not be autism specific.
Taline Sagharian
Google alert
Autism's financial toll grips parents
07:16 PM PST on Sunday, January 4, 2009
By JENNIFER DEAN
The Press-Enterprise
Parents of autistic children feel they are "financially drowning," a new study by the non-profit agency Easter Seals finds. Worry over medical and therapy costs, as well as time missed from work, preys on the minds of parents and the children they care for.
"My son is worried that if I die, he will have to live in a park and be homeless," said Moe Mendoza, of Ontario, mother of 12-year-old Nathaniel, who has autism.
The Easter Seals' Living with Autism Study found 74 percent of parents surveyed fear their children will not have enough financial support after they die. Many are very concerned about their child's future independence as an adult, especially as it relates to financial independence, quality of life, social and interpersonal connections, employment and housing opportunities.
Story continues below
Greg Vojtko / The Press-Enterprise
Nathaniel Mendoza, 12, of Ontario, was diagnosed with autism when he was 8 years old.
Moe Mendoza's son was diagnosed with autism two weeks before his 9th birthday.
"We always knew something was wrong," she said. "When he was younger, we were always in hospital emergency rooms. And at school, he was always hiding under the tables and he couldn't initiate any friendships."
At the time of the diagnosis, Mendoza was married to Nathaniel's father, but they split up within a year and she is a single parent.
"When Nathaniel realized his dad and I were really separated, he started wondering what would happen to him when I die," she said. "There's a park in Ontario with homeless people and he worries that's what will happen to him. He wants to find a way to end homelessness."
The Easter Seals study, conducted by Harris Interactive in conjunction with the Autism Society of America, was sponsored by corporate partner Massachusetts Mutual Life Insurance, which helps families with individuals with special needs access financial strategies for care and future needs.
Mendoza has spent time learning the ins and outs of dealing with county and federal agencies. She helps other mothers in her monthly support group locate agencies and fill out paperwork for financial support.
Moms Night Out, which meets monthly in San Bernardino, is made up of mothers with special needs children.
"A lot of people don't understand the emotional toll of raising a special needs child ... and what it does to a marriage," Mendoza said. Talking with other women in the same situation is helpful.
Nathaniel is an example of why early intervention is important, she said. The research shows that therapy from an early age can make a huge difference.
By the time Nathaniel was diagnosed it had already become difficult to transition him into public school.
He has been kicked out of two public schools and one afterschool program, Mendoza said. He is currently in a non-public school and is working to transition back into a public classroom.
Story continues below
Greg Vojtko / The Press-Enterprise
Moe Mendoza says her son, Nathaniel, 12, worries about his future should anything happen to her.
Mendoza is on the Ontario-Montclair School Board and she hopes serving on the board will give her an opportunity to speak for families with special needs children.
"Financially, you can't take care of a disabled child alone," she said. "You have to know how to fight for your rights."
The only place Nathaniel has made real progress is the Casa Colina Rehabilitation Center in Pomona, Mendoza said. The center has a social skills program for children severely impacted by their disability.
To pay for these services, Mendoza found non-profit agencies willing to help.
Another organization paid for her plane ticket to the California Legislative Blue Ribbon Autism Commission meetings in Sacramento, where she spoke about the education concerns and financial difficulties of raising a child with autism.
There are agencies that can help with rent, utilities and other cost-of-living expenses in times of dire need, she said. "Unfortunately, that happens occasionally."
The Family and Medical Leave Act provides some protection for parents who are called out of work for medical or health conditions of a dependent, Mendoza said.
But, that doesn't mean bosses are always understanding. And that doesn't mean the leave is paid.
Mendoza works as a secretary for Lanterman Developmental Center in Pomona.
"It takes an emotional toll every time I have to leave work," she said. "I can't afford to buy a home because I miss so much work ... I worry all the time about the costs of his education, medical treatment and what would happen to him if something happened to me."
"This study quantifies what we've heard anecdotally over the years," said Patricia Wright, Easter Seals' national director, autism services. "There is an urgent need for increased funding and services."
For more information on Easter Seals, visit www.easterseals.com. Read about the resources available for people with special needs, their families and caregivers at www.massmutual.com/specialcare/resources.
Reach Jennifer Dean at 951-368-9336, jdean@PE.com or http://blogs.pe.com/moms
End of mailing
