FOR ALL ONTARIO AUTISM ADVOCATES, THE MORE THAT ATTEND THIS MEETING THE MORE PRODUCTIVE IT WILL BE FOR EVERYONE. PLEASE DO NOT BE SHY IN ATTENDING THIS MEETING. THIS IS A JOINT EFFORT, IT IS NOT SPECIFICALLY FOR ANY ONE ORGANIZATION TO OVERSHADOW OTHERS, IT IS FOR ALL OF US TO ENSURE WE ARE THE STRONGEST WE CAN POSSIBLY BE IN OUR ADVOCACY.
THE FOLLOWING HAS BEEN WRITTEN AS YOUR PERSONAL INVITE BY BRUCE AND LAURA MCINTOSH. A PRE MEETING SURVEY IS CURRENTLY BEING DEVELOPED, AS A JOINT EFFORT FROM MANY ADVOCATES AND ADVOCACY ORGANIZATIONS, AND WILL BE AVAILABLE SHORTLY.
Autism advocates have been speaking out for a long time now. We’re not referring merely to the issues surrounding the IBI program. We’ve been battling for services in schools, public awareness, services for adults, respite for families, and so much more. And we have made significant progress.
Ten years ago, very few members of the public knew what autism was. Today, there is much more awareness—not only about what autism is, but also about the struggles families face in trying to access services for their child. Some members of the public even seem to be aware that children with autism grow into teens and adults with autism, and that perhaps we should think about how as a society we’re going to deal with that.
Five years ago, there was an age six cutoff for IBI. The pioneering work of the Deskin-Wynberg families in the court of law, combined with many of us fighting in the “court of public opinion,” managed to end that injustice. Today, new legal cases like the Sagharian class action and the Ceretti case are laying the groundwork for a new wave of legal activism.
Three years ago, the then Minister of Education, Sandra Pupatello, said that ABA could not be done in schools. Now, we have PPM 140, and while it’s hardly a magic bullet, it is a step in the right direction.
In more than six years of working as autism advocates, we’ve learned and re-learned, a variety of lessons. The most important one is that we are stronger when we stand together. While we may not agree on every goal or every point, but when we do, we can make progress.
We’ve been looking ahead for some time, trying to figure out what needs to happen next to improve the outlook for individuals with autism in Ontario. The benchmarks process, ever-growing waitlists, the schools crisis and funding issue all call out for action. But the tactics that we have used in the past have worn out. While many in government take this as a sign that the war of attrition is being won, they’re wrong. There’s plenty of fight left among the “veteran” autism advocates, and there is also a new generation who are just itching to get into the fight for the first time.
It’s high time we all got together for a big pow-wow. We need to get our act together.
We need to decide what goals are important to all of us. That’s to counter the line that we keep hearing about how we’re not all asking for the same thing.
Then we need to discuss how we will pursue those goals and what tactics are we prepared to use in order to achieve them—whether as individuals or as organizations, whether as “good cop” or “bad cop.”
We need to co-ordinate our efforts. We don’t need to merge all our different organizations into one—that’s not our objective here at all—but if we could find a way to approach the government from all sides pushing for the same key goals, we might just be successful.
To that end, we want to invite you to a meeting. One day—Saturday, August 8th, 2009—with some of the most experienced, energetic and outspoken autism advocates in Ontario. All you need to bring is an open mind and your ideas. Together, we’ll lay out a road map for the next wave of autism advocacy in Ontario.
I sincerely hope that you can join us on August 8th. Details about location will be available soon. If you are unable to attend, we’d still very much appreciate it if you could complete our survey, which will be posted on our website shortly. (www.ontarioautismcoalition.com)
Bruce and Laura McIntosh
Monday, May. 25, 2009
Growing Old with Autism
By Karl Taro Greenfeld
Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con's trick of lashing out before anyone could take a shot at him.
Noah's autism has been marked by "three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others," according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)
Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.
We are largely unprepared to deal with this crisis. Autism funding and research, so far, have predominantly focused on children. When I have visited autism conferences, there have been exceedingly few research projects devoted to low-functioning adult autistics. It remains difficult for families of adult autistics to find the programs they need, to access those services that are available and even to locate medical professionals and dentists who can handle adult autistics. Too much of the burden rests on the families themselves, who remain in the picture as caregivers, advocates and, too often, the only party with the autistic adult's best interests in mind.
Parents, of course, love their children. When I used to accompany my parents to visit Noah at Fairview, we would sometimes see other parents visiting their middle-aged "boys" — some of them strapped into helmets because of their self-injurious behavior — who walked with the same stiff-legged gait, bobbed their heads from side to side, twiddled rubber bands or twigs in their hands and sometimes smacked their foreheads with their fists. They were unlovely men, I thought, lost, impossible to like. But once the parents were gone, who was supposed to keep making these visits and these phone calls checking up on their sons and attending these meetings with the administrators and bureaucrats and caregivers to advocate on behalf of the lost men? That will end up being me, or people like me, the siblings. We will be the ones left caring.
My family served for the first 14 years of Noah's life as a sort of monument to my parents' love for their autistic son. We functioned as a Noah-support group. Almost as soon as I was aware of myself, there was Noah, a perpetual source of worry and concern because of his delayed development. He wasn't turning over, crawling, walking, doing anything on schedule except talking — and he soon regressed out of speech. My parents began then the lacerating pilgrimage from specialist to specialist, seeking, first, an explanation for this delayed development and then, finally, desperately, a cure, a therapy, hope.
In the late 1960s and early '70s, autism was considered a rarity in the U.S., so uncommon that many pediatricians believed they had never seen a case. Treatment was laughable: the dangerous Freudian inanities of Bruno Bettelheim and his now widely discredited methods, the talk therapy of the psychoanalytic community, whose members wanted to treat the parents rather than the child (the blame-the-parents approach). We moved from New York to Los Angeles in search of a cure for Noah. There, at UCLA, new behavioral programs, the operant-conditioning and discrete-trial therapies that now dominate autism treatment, were being pioneered by psychologists like O. Ivar Lovaas.
Noah was an early patient of Lovaas', yet the success that Lovaas would have with some of the autistic children he worked with eluded Noah, who remained among the lowest-functioning cohort — nonverbal, unable to dress himself, not toilet-trained until he was 5. Lovaas soon told my parents that he had gone as far as he could with Noah, that he was now focusing on younger children. (I have since heard of numerous children who also, as one parent I know put it, "flunked" Lovaas.) It was an early disappointment but only a precursor of so many to follow.
In the late '70s, my mother, frustrated at the lack of care and attention given to special-education children, who actually had fewer school hours and more days off than "normal" children did, opened her own day-care center for the developmentally disabled. By this time, Noah was 14 and as tall as my mother. My father, already in his 50s, was soon diagnosed with a heart problem; he has since had open-heart surgery. My mother, who had been Noah's most assiduous and faithful teacher, spending hours a day at a table in his room, constantly trying to get him to repeat sounds or tie a string, was exhausted. Both of them felt they couldn't take care of him at home anymore, that it had become a matter of their survival or Noah's. My parents reluctantly began looking for a place for Noah; a year later, they chose a group home in the San Fernando Valley. (See six tips for traveling with an autistic child.)
When we arrived, we were shown the room — four beds, three along one wall and the other in a corner, two windows with vinyl draperies — that Noah would share with three other boys. My parents signed some paperwork and showed the staff how to use the rice cooker they were donating so that Noah could still eat his favorite food. My mother had sewn labels into all his clothes and prepared a huge stack of gyoza dumplings for him. My parents were given additional forms to sign, including one that allowed the use of "aversives" — hits, slaps, spankings.
It wasn't forever, my father believed, as if he had packed his son off to a military academy for some discipline. But he knew, he already knew, that this felt wrong.
My mother was crying.
Noah bounced on a leather sofa, uninterested, and then reclined on his elbow. He didn't know this was forever; he didn't even know he wasn't coming home with us.
We left him sitting there. He waved to us, a weak, indifferent, limp-wristed gesture. Goodbye, like he didn't care.
Driving away felt like a crime.
That was the first of half a dozen residential placements for Noah. Some were better than others, but none of them was a place you would want to put your own child.
Fairview developmental center was Noah's last institutional stop. Built during the 1950s, Fairview is a complex of stucco bungalows spread over 100 acres (40 hectares) next to a golf course. Noah lived in Residence 14, one bungalow among about 50. In recent years, as the state has embraced a program known as Community Care, with the goal of moving developmentally disabled adults, including the severely autistic like Noah, from state facilities to local supported-living homes, these bungalows have been gradually shuttered. The money spent maintaining vast complexes like Fairview, the state believes, should instead be filtered through local agencies. Many of the higher-functioning developmentally disabled or autistic adults were never put into the state system to begin with, leaving the more difficult cases like Noah in facilities that increasingly rely on pharmaceuticals to treat any and all developmental and behavioral challenges.
Over the years, we noticed that each time we visited, Noah had a new scar, a black eye or a chipped tooth. In clinical parlance, these were Noah's "unobserved, self-inflicted injuries" — or USIs. One day, Noah had a dozen thick, black stitches on his forehead. As Noah's medications increased, so too did the number of USIs he suffered. Noah was already on Trileptal, Zyprexa and oral and injected Ativan. The collective side effects of these three drugs filled three pages of his IPP. I've looked and never been able to find a study of how they interact in "normal" individuals or the autistic. Because Noah had reached the maximum legal dosage for each of these medications, the Fairview staff urged another new medication, the antidepressant Remeron. (It is important to note that Noah suffers from no other physical illness, ailment or handicap. His problems are entirely neurological.)
But the drugs always seemed to make Noah worse, we pointed out.
They told us the choice was ours: either more drugs or a transfer to another ward in the facility where the most dangerous and criminally inclined autistic adults were housed.
My parents and I were desperate to find a well-run supported-living situation for Noah, but they're rare. When the state launched Community Care, numerous for-profit companies sprang up to house the developmentally disabled, each of whom is entitled to many thousands of dollars a year in state funding. The companies that have succeeded tend to work with higher-functioning autistic or developmentally disabled adults, those who pose little risk to themselves or others. Other companies are alleged to be providing inadequate care or even in some cases abusing clients. (See six tips for traveling with an autistic child.)
The risks of Community Care for families of the adult autistic or mentally challenged are numerous. Perhaps the greatest worry is that the state will cut the promised funding per client, leaving families to foot the bill. Institutions like Fairview, flawed though they sometimes are, are often necessary for care of the lowest-functioning or violently autistic. The seemingly benign term community care, when it is invoked by conservative state representatives in domed capitols, is too often a code word for budget-cutting. The concept of moving the autistic into loving group homes where they will be taught or looked after is Edenic but inadequate to society's needs. For the high-functioning, such assisted-living situations are a better alternative than institutionalization; for the low-functioning, the concept is often better than the reality. What happens if the supported-living home we find for Noah goes belly-up or loses its license or is just plain corrupt? Then where would Noah go? My parents simply can't care for him at home, nor could I.
And yet by 2005, my brother seemed almost in critical condition; we had no choice but to find yet another new place for Noah.
When I was writing my book about my brother, Boy Alone, I wished I had a story of hope and salvation. It is miracles that sell books. There seems to be an insatiable demand for narratives that end in triumph over an affliction: the cripple walks, the mute speaks, the autistic boy laughs and hugs and cries. We hunger for that uplifting journey, as opposed to the cruel odyssey I had to tell. What did I have to offer? My adult brother, still autistic, still nonverbal, still lost. As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won't be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do.
We did, however, catch our own small break three years ago. Through the Westside Regional Center, my parents found out about Diverse Journeys, an assisted-living program willing to place Noah in a rented house in Los Angeles closer to my parents' home and therefore an easier commute for their weekly visits. Noah lives in a two-bedroom house with a roommate, a "normal" person, whose rent is partly subsidized in exchange for the attention she must pay to Noah when she is home. A rotating series of caregivers take Noah to the park or for walks or to fast-food restaurants during the day.
The program has made some real progress in weaning Noah from some of the medications he had been taking, cutting him down to two drugs from four. And the mysterious scars and bumps and bruises he was getting, what Fairview termed USIs, have largely ended. So far, Noah's assisted-living program represents a great improvement over Fairview, and my parents and I are thankful every day for this change in Noah's circumstances.
When Noah is happy, it is a stark, uncut ebullience, rising, as my father wrote in his first book about our family, A Child Called Noah, "from a deep, pure place." The joy emanates from him with such force that he will run toward me with his wide smile and rub his head against my shoulder in an almost feline gesture of pleasure. On days when Noah is in a good mood, when he is humming an up-tempo version of his melody of repeated, nonsensical syllables, we are again reminded that he is capable of great happiness.
Yet on some visits he is awful. He has good moods and bad moods. Just like me.
Is Noah happier in his new situation? Perhaps a little. He can never say.
Noah's condition persists, an immovable psychic object. As a family, we lived in the present, from crisis to crisis; my parents always mustering the energy for a response. My father is in his 80s now, my mother in her late 70s. They will go on as long as they can. Then I will try to step in.
Will I always be there for Noah, as my parents have been?
I wish I could say, Yes, definitely, I will be there.
But I honestly don't know.
Greenfeld is the author of Boy Alone: A Brother's Memoir (Harper), from which this article is adapted
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The Peterborough Examiner:
Did someone say, let the children suffer?
Posted 3 days ago
Ontario's Liberal government will spend $109 billion this year, and intentionally go $14 billion in the hole to try to stimulate a struggling economy.
John Wood and his family are hoping that same government will change its mind and return the $4,920 a year they have been getting to help cope with 11-year-old Grace Wood's severe, and expensive, health problems.
You read it right: $14,000,000,000 in the red for Ontario - nine zeroes - and $5,000 it will save by cutting off the Wood family - three zeroes.
The McGuinty government could argue that Grace Wood isn't actually losing anything. Her parents, John and Sandy, will do what any parent would. They will keep buying Grace the $150 masks she wears at night so she can breathe despite the effects of a rare genetic disorder that narrows her windpipe to the width of a straw.
John will soon fly with her to Edmonton for another bout of surgery, this time a recently developed procedure that will replace a valve in her leaky heart. The Woods have to pay for flights, his hotel bills, food and all the other costs that add up when you're travelling.
Friends, family, co-workers and people who read about the family's plight will no doubt help out. That's what happened six years ago when Grace, who was not expected to see her third birthday, was taken to California for two life-saving operations.
So yes, in one way the province can save its $4,920 a year and claim it is doing no harm to Grace and her family.
But of course there is harm. When a child is seriously ill a disproportionate amount of family resources go to dealing with that situation -money, but also time, energy and attention. It is done from love, but the price is still high.
The Woods lost their monthly $410 payment because John Wood's salary increased to more than, but barely more than, the $62,641 cutoff for a family of four. However, when they began receiving help the cutoff was $60,000. If it had been indexed to inflation, the cutoff would now be $76,000.
That particularly cruel irony isn't lost on the Woods. MPPs have their salaries indexed. Every spring they get an automatic raise, a protection they voted themselves in 2006 -along with a 25% raise.
More than 60 of the 71 Liberal MPPs now make more than $132,000 a year - indexed.
But, according to MPP Jeff Leal, the province might not be able to afford to give the Woods, and others in their situation, a little help.
"Heartless" is the mildest term to describe that attitude. When you're burning through $109 billion a year, there is no justification for taking a few thousand dollars from the families of suffering children.
Province ignoring family's plight
Plenty of waste at eHealth, but no money for disabled child
By CHRISTINA BLIZZARD, SUN MEDIA
Last Updated: 26th July 2009, 3:40am
I don't know why, but any time a heartless bureaucracy faces off against a loving family, the faceless bureaucrats win.
Loving families end up heartbroken.
Case in point is the gut-wrenching story of little Grace Wood I told readers about on Wednesday.
Grace, 11, was born with DiGeorge syndrome, a rare chromosome disorder that causes severe heart and respiratory defects.
Grace has had three open heart surgeries, a tracheotomy and has a reconstructed airway. Her dad, John, is preparing to take her to Edmonton for life-saving surgery to replace a heart valve.
In a letter this month, the government told the family they were cut off from a $410 monthly allowance they were receiving, effective April 1.
They've been told they no longer qualify for the Assistance for Children with Severe Disabilities program (ACSD) because Wood now makes slightly more than the $60,000 income cap on the program.
What is so outrageous about the cap is that it doesn't acknowledge how much the family is spending on Grace's care, or the extent of her disabilities.
They've already paid out of their own pocket for two trips to California for heart surgery and will pay their own travel and accommodation costs to go to Edmonton. They can't afford for mom, Sandy and son Scott to go with them.
Wood points out the income cap hasn't been significantly increased for the past 12 years, while his income has slowly increased.
The response from the Ministry of Children and Youth Services is that the program is meant for low and moderate income people, so they are no longer eligible.
Well, give me a break. If $60,000 isn't a "moderate" income, I don't know what is.
In the Peterborough Examiner this week, Wood pointed out that over that same period, MPPs' salaries have skyrocketed.
He told reporter Elizabeth Bower that if the province can afford to give MPPs pay hikes -- especially the 25% raise in 2006 -- then it's "obscene" to say it can't afford to better help families with children who have disabilities.
"We don't cap them (MPPs)," Wood said. "But we tell a family of four to not make $2,600 more (over the last 12 years) or else we'll cut you off."
The sad part in all of this is that when the chips are down, you can't always count on government to be there for you.
The silver lining is that you find out what community is all about. You can count on friends, neighbours -- even the kindness of strangers who were touched by the courage and dignity of this little girl.
The school lunch program where Sandy volunteers donated their May proceeds to the family. And her brother Scott's Grade 6 class held a fundraising dance.
This week, a local trucker ripped my column from the newspaper and stuffed it in an envelope with a note saying he wants to help - and passed it along to Wood's father.
Another reader with a small engineering company contacted me with an offer of financial help with accommodation in Edmonton. He just thought Sandy should be at her daughter's side for the operation. He is shy about offering, just as Wood feels awkward about accepting.
The real point is the Wood family shouldn't have to rely on charity to care for a severely disabled child.
While they are truly grateful for all the help, that wasn't why they contacted me.
They have been quietly coping with Grace's severe disabilities for 11 years. They simply thought it was unreasonable for the government to pull the rug from under them.
Surely a program like this should be indexed to the cost of living. Or based on the severity of the child's disability.
This is the same government that squandered millions of dollars on high-priced consultants for eHealth. There's always money for tea and cookies for the high flyers.
And there's always money to hike MPPs' salaries.
Yet they're cutting off $410 a month in aid for a brave little girl with severe disabilities.
Surely a civilized society first helps the most fragile in its midst.
What has happened to our priorities?
This is shameful.
An excellent Lindsay Moir column today:
Ask Lindsay Moir:
Entering High School
Friday, July 24, 2009
Our son will enter Grade 9 this Fall. He has autism and a mild developmental delay. He has always been integrated with accommodations and some limited modifications. He functions at about a Grade 5-6 level academically, and has many friends from his elementary years, he is "very social" and he has always been "included" in school activities.
We assumed that his high school placement would be a continuation of his elementary years and attended the Orientation Night in March. We were shocked to find that they had slotted him into a Special Class fulltime---- they presented this as a "done-deal" and expected us to be thrilled!!
We talked to his elementary principal and teachers who were also shocked! We all knew that he lagged behind, but we also knew that he had exceeded all our expectations (academically and socially) in his mainstreamed setting. He has never had more than a couple of hours per week of extra help from the Resource Teacher or an EA. His peers have been his main support system ( and most of them are going to the same high school).
In our first few meetings with the high school, we were TOLD to choose between:
full-time in the Life Skills class, OR
full-time in the Developmental Class
On your advice we agreed to visit both classes (never turn down program you have not observed). The Developmental Class was basically "Day Care and recreation" with no real educational goals--- our son is capable of ongoing academic progress, so this was clearly not a program to meet his needs. The Life Skills Program was academically several years behind his functioning level, but some of the content might be beneficial for our son. The school continued to push us to pick one or the other.
Finally we sent a letter stating that the appropriate program would look like this:
Core English Program in the Life Skills class
Integrated in a regular class for Math, Science, Health & Phys Ed with some accommodation and perhaps very limited modification
Ride the big yellow school bus with his brother, which he has done with no incidents for the past 9 years
Eat lunch in the Cafeteria with his brother and his elementary school buddies
The school seemed OK with this (nothing in writing). On the last day of school we received the IPRC Statement of Decision with the following "decision":
Full time in the Developmental Class
Lunch in the Developmental Class
Special Education van transportation
With no staff left at the school, we immediately contacted the Superintendent who did get back to us, with "Plan B":
Full-time in Life Skills OR Dev Ed class (our choice)
Lunch in that classroom with an EA
Spec Ed van and if "successful", consider big yellow bus after one semester
This is not satisfactory.
Our son has never seen himself as "different" and thanks to his elementary school he has been very successful in an integrated (inclusionary) setting. We are realistic that some accommodation and modification will be necessary, but why would we move backwards in areas that he has handled already??
Help! What do we do now??
Immediately (and formally) appeal the PLACEMENT DECISION.
It is clear to me that the high school has been trying to FIT YOU SON into an existing program, rather than CREATING A PROGRAM to FIT YOUR SON. This is the fundamental issue. Ask the Superintendent to immediately convene an IPRC prior to the beginning of school. It is important to have the transportation and schedule finalized PRIOR TO THE START OF SCHOOL--- it is not acceptable to leave this till September!
(the following answer is based on information garnered from the parents by telephone, not from their original email)
Both the Developmental Ed Class and the Life Skills Program are organized in a "holistic" way--- there is no kind of schedule by subject or topic, and everything is "taught as it comes up". The classes follow themes ( although no-one in the Developmental Class could identify these "themes".)... This kind of "free-form" timetable makes it impossible for students to be integrated OUT of these classess or to be integrated IN, as you are requesting--- it is all or nothing!!! You can't be there for Core English because it might occur (or not occur) at any time!!! This is a 1970s model that is not very progressive!!!! Most special classes in Ontario have moved past this structure many years ago.
It is not realistic to think that these classes in your school will change their philosophy and structure for September-- maybe by September 2010???? Therefore you need to think of how his "modified" English program can be delivered in either an Academic or Applied setting or in a Resource Room-- make it your goal to have Core English in Life Skills at a future date--- you might be surprised how well it can be delivered in a regular class. His Grade 8 teachers can be used to setup a program similar to what they did this past year. Whether this is for credit, or not, is not the big issue!
For his "academic" subjects, place him in regular classes where he has peer-mentors from his old elementary school and schedule a Resource period each semester to give him individual help with these subjects.
Lunch and transportation are remnants of a "paternalistic" system based solely on your "handicap", rather than on your proven ability... Economically it makes sense to NOT have special transportation for a student with 9 successful years of riding the bus. Having him socialize with his peers and his brother at lunch, only frees up the EA to help needier students over the lunch hour-- this is so obviously out-of-date thinking, I can't believe it!!!!! everyone talks about "limited resources", but here we are assigning them based on which class the student is in..... RIDICULOUS!!
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