Transcript: Managing Ontario's Autism Services | Feb 26, 2019

Steve sits in the studio. He's slim, clean-shaven, in his fifties, with short curly brown hair. He's wearing a black suit, white shirt, and printed blue tie.

A caption on screen reads "@spaikin, @theagenda."

The caption changes to "Managing Ontario's autism services."

Steve says IN EARLY FEBRUARY, THE
PROVINCIAL GOVERNMENT ANNOUNCED
AN OVERHAUL OF HOW IT MANAGES
PROGRAMS AND SERVICES FOR
CHILDREN WITH AUTISM.
AND IT'S BEEN HEADLINE NEWS EVER
SINCE.
HERE TO EXPLORE THE PLAN AND
WHAT'S MADE IT SO CONTROVERSIAL:
MARGARET SPOELSTRA.
SHE IS EXECUTIVE DIRECTOR OF
AUTISM ONTARIO.

Margaret is in her fifties, with shoulder length straight light brown hair with bangs. She wears glasses, a printed black blouse, and a black cardigan sweater.

Steve says TRACIE LINDBLAD, CLINICAL
DIRECTOR OF MONARCH HOUSE, A
PRIVATE TREATMENT CENTRE FOR
INDIVIDUALS WITH DEVELOPMENTAL
DISABILITIES, INCLUDING AUTISM.

Tracie is in her fifties, with shoulder-length straight brown hair in a side part and wears a turquoise turtleneck sweater and a gray jacket.

Steve says ANNE BORDEN, CO-FOUNDER OF
AUTISTICS FOR AUTISTICS ONTARIO;

Anne is in her forties, with above the shoulders wavy brown hair and wears a blue sweater.

Steve says AND TWO PARENTS OF CHILDREN ON
THE AUTISM SPECTRUM: HANNAH
RASMUSSEN AND AZED MAJEED.

Hannah is in her thirties, with short wavy brown hair and wears a black sweater.

Azed is in his fifties, with short graying hair and a soul patch, and wears glasses, a window pane black shirt and a black jacket.

Steve says AND WE ARE DELIGHTED TO WELCOME
EVERYBODY AROUND OUR TABLE
TONIGHT HERE AT TVO.
LET'S JUST, BECAUSE THERE IS SO
MUCH BACKGROUND THAT PEOPLE NEED
TO KNOW TO GET READY FOR OUR
DISCUSSION, SHELDON, IF YOU
WOULD, LET'S BRING THESE
GRAPHICS UP JUST TO GET PEOPLE
UP TO SCRATCH.

Steve reads data from a graphic with the title "Autism in Ontario."

Steve says THERE ARE 23,000 CHILDREN ON
WAIT LISTS FOR AUTISM SERVICES,
2400 FAMILIES WAITING FOR
DIAGNOSTIC ASSESSMENT, AND THE
AVERAGE WAIT TIME FOR THAT
ASSESSMENT IS 31 WEEKS.
THESE FIGURES FROM THE
GOVERNMENT OF ONTARIO.
NOW, WHAT'S NEW?
THERE IS A PROMISE TO DOUBLE
FUNDING TO DIAGNOSTIC HUBS TO
CLEAR THESE WAIT LISTS.
THERE WILL BE A CHILDHOOD BUDGET
UNTIL AGE 18 OF UP TO 140,000 DOLLARS.
THERE'S A TARGET OF 18 MONTHS TO
CLEAR THE EXISTING WAIT LIST.
AND THE GOVERNMENT ALSO PROMISES
TO CREATE AN INDEPENDENT AGENCY.
IN THE MEANTIME, HOWEVER, AUTISM
ONTARIO, MARG, THAT'S YOU, I
GUESS, WILL HELP FAMILIES
NAVIGATE THE NEW SYSTEM.
OKAY, THAT'S SOME OF WHAT IS ON
OFFER RIGHT NOW.
LET'S START WITH THIS.
MARG, HOW DOES THIS PLAN DIFFER
FROM WHAT ONTARIO FAMILIES HAD
BEFORE UNDER THE LIBERAL
GOVERNMENT?

The caption changes to "Managing Ontario's autism services. A new direction."

The caption changes to "Margaret Spoelstra. Autism Ontario."

Margaret says RIGHT.
SO THE CHANGES THAT WERE
ANNOUNCED ARE A SHIFT, I WOULD
SAY, IS THE DECISION ABOUT THIS
DIRECTION IS MORE OF A FISCAL
ONE THAN LOOKING AT THE EVIDENCE
SPECIFICALLY.
AND SO BEFORE THE FAMILIES WERE
RECEIVING AN OPPORTUNITY TO HAVE
THEIR CHILD'S NEEDS ASSESSED,
AND THEN THEY SAW FUNDING BASED
ON WHAT THOSE NEEDS WERE.
THE DIFFERENCE IS NOW THAT MAY
NOT NECESSARILY BE THE PATH THAT
FAMILIES GO DOWN BECAUSE NOW THE
FUNDING WILL BE PLACED IN THEIR
HANDS IN ORDER TO MAKE CHOICES
ABOUT SERVICES WITH FAR LESS
MONEY THAN WOULD BE NECESSARILY
ASSESSED FOR AN INDIVIDUAL
CHILD.

Steve says WHEN PEOPLE SAY
CHOICE, CHOICE USUALLY SOUNDS
LIKE A GOOD THING.
IS THAT THE CASE HERE?

Margaret says IT MAY BE FOR SOME FAMILIES,
AND IT DEPENDS ON THE CHILD'S
NEED.
SO I THINK THAT'S... THAT'S AT
THE HEART OF THIS.
BUT WHAT WE DO KNOW IS THAT IT'S
NOT A CHOICE IF WHAT YOUR
ASSESSED CHILD'S NEEDS ARE FOR
THIS PARTICULAR THERAPY ARE
MANY, MANY MORE HOURS THAN WHAT
THE FUNDING WILL ALLOW FOR.
THEN YOUR CHILD'S NOT GETTING
WHAT THEY NEED, AND THAT'S NOT
REALLY A CHOICE.

Steve says GOTCHA.
WE DID INVITE MINISTER LISA
MACLEOD, WHO IS RESPONSIBLE FOR
THIS FILE, TO BE ON THE PROGRAM.
SHE DECLINED.
HER PARLIAMENTARY ASSISTANT WAS
ALSO INVITED TO COME ON.
SHE ALSO DECLINED. HERE IS THE
STATEMENT THAT MINISTER MACLEOD
HAD SENT ALONG, THOUGH:

A slate appears with a caption that reads "The minister's statement. Under the old system, the parents of three out of every four children were paying out of pocket to support their child. Stuck on a waistlist with no end in sight, families had no idea how they could plan for the future. With our Childhood Budget, families with need it most will get help and be able to choose the supports that will work best for their child such as behavioural services, caregiver capacity, building and training, respite services, technology aids, and travel. Lisa MacLeod, Minister of Children, Community and Social services (February 26, 2019).

Steve says THAT'S FROM LISA MACLEOD, AND
AZED, I COULDN'T HELP BUT HEAR
YOU SNORT WHEN I READ THAT.

Azed says COMING OUT OF A COLD, BUT
THERE WAS A SNORT AS WELL.

Steve says HOW COME?

The caption changes to "Azed Majeed. Parent."

Azed says WELL, LOOK, THE ISSUE HERE
FOR PARENTS, I THINK AT LEAST
FOR US, AND I HAVE A CHILD WHO'S
15.
MY SON DJANGO, SO WE'VE BEEN
THROUGH IT, AND THE ISSUE HERE
IS, YOU KNOW, IT ALL SOUNDS GOOD
IN THE POLITICAL SENSE, YOU
KNOW, WE'RE GOING TO HELP, WE'RE
GOING TO GET THE WAIT LIST
CLEARED, BUT THE ISSUE IS THAT
THIS IS NOT A NEEDS-BASED PLAN,
RIGHT?
THERE ARE A COUPLE OF THINGS
HERE.
ONE IS, YOU KNOW, I REALLY
BELIEVE... AND THIS IS A LARGER
DISCUSSION, BUT I REALLY BELIEVE
THAT THIS IS A POOR WAY TO
DISTRIBUTE THE FUNDS THROUGH THE
MINISTRY OF SOCIAL SERVICES.
THIS IS A MEDICAL CONDITION.
AUTISM IS A MEDICAL CONDITION.
AUTISM IS A BLANKET STATEMENT,
RIGHT, BUT IT'S A MEDICAL
CONDITION.
IT'S A NEURODEVELOPMENTAL
DISORDER.
EVEN THOUGH IT'S A CONTROVERSIAL
TERM.
SO I DON'T UNDERSTAND WHY YOUTH
AND SOCIAL SERVICES IS HANDLING
THIS.
THIS IS A HEALTH ISSUE, AND IT
HAS BEEN BROUGHT FORWARD AS A
PRIVATE MEMBER'S BILL IN THE
PAST, THIS SHOULD BE COVERED BY
OHIP AND WHY IS IT A CHILDHOOD
ISSUE?

Steve says BECAUSE IT DOESN'T GO
AWAY.

Azed says IT DOESN'T GO AWAY WHEN
YOU'RE 18.
AND OTHER THAN THAT, THE MORE
IMPORTANT ELEMENT HERE IS THE
FUNDING ITSELF DOESN'T COVER
ANYTHING.
IT'S LIKE SAYING YOU GO TO THE
DOCTOR, HE GIVES YOU
ANTIBIOTICS.
YOU GOT TO TAKE FOUR A DAY FOR A
WEEK.
INSTEAD OF THAT WE'RE GOING TO
GIVE YOU ONE A DAY TO FOUR
PEOPLE FOR A WEEK.
YOU KNOW, IT'S NOT EFFECTIVE.
IT'S NOT GOING TO WORK.

Steve says THAT IS THE BOTTOM
LINE HERE, IS WHEN THE LIBERALS
DECIDED TO GIVE FULL COURT PRESS
TREATMENT TO WHOEVER THEY COULD
GIVE IT TO, THE CONSERVATIVES
ARE ESSENTIALLY TAKING THE SAME
BUDGET, BUT SPREADING IT OUT
OVER MORE PEOPLE SO THAT MORE
PEOPLE CAN GET TREATMENT, BUT
NOT NECESSARILY AS INTENSIVE AS
SOME NEED.
RIGHT?
THAT'S THE BOTTOM LINE HERE?

Azed says ABSOLUTELY, YEAH.

Steve says HANNAH, GIVE ME YOUR
SENSE ABOUT THE NEW ANNOUNCEMENT
AND HOW IT'S WORKING IN YOUR
SITUATION.

The caption changes to "Hannah Rasmussen. Parent."

Hannah says WELL, IT WON'T WORK IN OUR
SITUATION.
OUR KIDS WON'T GET FUNDING.
WE HAVE TWO KIDS ON THE
SPECTRUM.
OUR DAUGHTER IS OUT OF THE MAJOR
FUNDING GAP, BUT SHE ACTUALLY
DOESN'T NEED THAT MUCH FUNDING.
SHE NEEDS A LITTLE BIT OF HELP
WITH SOME GROSS MOTOR SKILLS.
SHE MAY NEED MORE STUFF IN THE
FUTURE, BUT WE DON'T KNOW.

Steve says HOW OLD IS SHE?

Hannah says SHE IS ALMOST 8.
AND THEN OUR ALMOST 4-YEAR-OLD
NEEDS A LOT OF FUNDING.
LIKE WE'RE LOOKING AT 50,
60,000 DOLLARS IN THERAPY, EVEN IF WE
WERE TO HAVE THE MAXIMUM AMOUNT
WE COULD GET 20.
AND THAT'S ONLY FOR FAMILIES
EARNING UNDER 55,000.
SO THEY CAN'T MAKE UP THAT
DIFFERENCE.
THEY WON'T BE ABLE TO USE IT IN
A WAY THAT THE GOVERNMENT IS
AIMING FOR.
SO THEY ARE SAYING THEY GIVE US
CHOICES, BUT WE'VE BEEN TOLD
SPEECH THERAPY IS NOT COVERED,
WHICH IS A REMARKABLE
CONSIDERATION GIVEN IT'S A
COMMUNICATIVE DISORDER FOR A LOT
OF CHILDREN.
OCCUPATIONAL THERAPY WON'T BE
COVERED.
THERE'S A LOT OF GROSS MOTOR AND
FINE MOTOR SKILLS.
THERE'S STUFF THAT WE CAN DO TO
HELP THESE KIDS, BUT THEY ARE
TAKING AWAY OUR CHOICES.

Steve says WHAT HAVE YOU DONE
WITH YOUR BASEMENT?

Hannah says WE TOOK A FINISHED APARTMENT
THAT WAS GOING TO BE FOR
GRANDPARENTS AND WE TURNED IT
INTO AN AIRBNB.

Steve says SO YOU CAN MAKE SOME MONEY.

Hannah says YEAH, SO WE PAY FOR ABOUT
HALF OF MY SON'S PART-TIME
THERAPY WITH THAT.

Steve says DO YOU THINK THAT'S
THE WAY IT OUGHT TO BE?

Hannah says NO.
I WOULD REALLY LIKE TO NOT... I
HAVE TO GO HOME FROM WORK
SOMETIMES AT LUNCH TIME TO CLEAN
THE APARTMENT TO TURN IT OVER
FOR THE NEXT GUEST.
THAT'S A JOB AND A HALF.
I WORK FULL TIME.
I TAKE CARE OF TWO SPECIAL NEEDS
KIDS.
I SHOULDN'T HAVE TO TURN MY
HOUSE INTO... LIKE, I SHOULDN'T
HAVE TO RENT OUT EMPTY ROOMS IN
MY HOUSE TO GIVE MY KIDS MEDICAL
TREATMENT.

Steve says TRACIE, LET'S TALK
ABOUT THIS CHILDHOOD BUDGET OF
140,000 DOLLARS.
HOW DO YOU SEE THAT BEING
DISPERSED?

The caption changes to "Tracie Lindblad. Monarch House."

Tracie says WELL, I THINK IT'S A LITTLE
MISLEADING, 140,000 DOLLARS.
IT SOUNDED INITIALLY LIKE WE
COULD WORK WITH THAT AS A
PROVIDER AND FOR OUR FAMILIES,
ESPECIALLY WHEN MINISTER MACLEOD
TALKED ABOUT FRONT LOADING THAT
BUDGET TO PRESCHOOL OR EARLY
INTERVENTION.
SO THAT WOULD... THE WAY A
BEHAVIOURAL ANALYST WOULD LOOK
AT IT, THAT WOULD TRANSLATE TO
ROUGHLY TWO YEARS OF FULL-TIME,
WHICH MATCHES THE RESEARCH WHICH
SAYS THAT'S A REALLY GOOD SPEND
AND BEING FISCALLY RESPONSIBLE.
BUT WHAT THEY DIDN'T ANNOUNCE
INITIALLY WAS THAT THERE'S A CAP
EVERY YEAR AS WELL.
SO THE ONLY FAMILIES THAT WILL
ACTUALLY BE ENTITLED TO THE
140,000 IS IF YOUR CHILD IS
DIAGNOSED BEFORE THE AGE OF TWO,
YOU START TREATMENT AT TWO, YOU
MAKE UNDER MINIMUM WAGE, BOTH
PARTIES, AND NOTHING CHANGES IN
YOUR FAMILY FINANCIALLY UNTIL
YOUR CHILD REACHES 18.

Steve says THAT DOESN'T SOUND
LIKE IT'S GOING TO COVER VERY
MANY PEOPLE.

Tracie says I WOULD NOT THINK IT WOULD
COVER ALMOST ANYBODY IN THE
PROVINCE.
SO IT REALLY... AS THE PARENTS
HAVE SAID, IT REALLY ISN'T GOING
TO PROVIDE ANY TREATMENT THAT IS
MEANINGFUL.
RESPITE ISN'T A TREATMENT FOR A
CHILD.
IT MAY BE VERY MUCH NEEDED FOR
FAMILIES, TOTALLY AGREE WITH
THAT, BUT IT'S NOT TREATMENT FOR
A CHILD.
TRAVEL ISN'T TREATMENT FOR A
CHILD.
IT DOESN'T... IF YOU ARE
CLAIMING TRAVEL, IT'S NOT
LEAVING YOU MUCH FOR TREATMENT.
I'VE HAD AS NOT TREATMENT...
iPAD IS NOT TREATMENT.
SO REALLY, THE ONLY THING LEFT
IS PARENT TRAINING, WHICH
ABSOLUTELY IS TREATMENT, BUT
EVEN THAT, WHEN YOU LOOK AT THE
MAX OF 20, UP TO 20,000 UNDER
THE AGE OF SIX, OR A MAX OF UP
TO 5,000 OVER THE AGE OF SIX, IT
DOESN'T EVEN GIVE YOU A LOT OF
MONEY FOR THAT.

Steve says ANNE, LET'S GET YOU IN
ON THE DISCUSSION.
TELL US FIRST OF ALL, AUTISTICS
FOR AUTISTICS ONTARIO.
WHAT DOES YOUR GROUP DO?

The caption changes to "Anne Borden. Autistics for Autistics Ontario."

Anne says WE FORMED ABOUT 15 MONTHS
AGO.
WE ACTUALLY FORMED IN RESPONSE
TO THE ONTARIO AUTISM PROGRAM
BECAUSE WE FELT LIKE IT DIDN'T
ADDRESS THE NEEDS OF THE
COMMUNITY AND THAT IT BROUGHT
INTO SOME IDEAS ABOUT AUTISM AND
AUTISM THERAPY THAT ARE RATHER
OLD FASHIONED, AND WE WANTED TO
SHIFT THE PARADIGM A LITTLE BIT
AND GET US TALKING ABOUT HOW WE
MAKE AUTISM POLICY AND HOW
AUTISM POLICY IS DONE AND HOW WE
APPROACH AUTISM IN A DIFFERENT
FASHION.

Steve says AND YOU WORRY ABOUT
ADULTS AS WELL, NOT JUST KIDS,
RIGHT?
ADULTS IS PART OF YOUR MANDATE?

Anne says YES, DEFINITELY.

Steve says BECAUSE IT ISN'T
OBVIOUSLY FOR, YOU KNOW,
GOVERNMENTS ARE VERY MUCH
FOCUSED RIGHT NOW ON THE EARLY
YEARS.
TELL US WHAT YOU THINK ABOUT THE
GOVERNMENT'S ANNOUNCEMENT AND
THE WAY THEY CHANGED THINGS.

Anne says WELL, I'M GLAD THAT THEY'VE
SCRAPPED THE OAP.

Steve says OAP IS?

Anne says ONTARIO AUTISM PROGRAM, THE
FORMER PROGRAM.
I KNOW THAT'S A CONTROVERSIAL
STATEMENT TO MAKE IN THIS GROUP,
BUT HERE I AM, AND WE ARE GLAD
THAT THEY'VE SCRAPPED THAT
PROGRAM.

Steve says BECAUSE?

Anne says WE SAW THAT THE WAY THE MONEY
WAS BEING DISTRIBUTED WAS FOR
VERY EXPENSIVE, INTENSIVE,
HOURLY INTENSIVE PROGRAMS FOR
KIDS, AND THERE WAS A LOT THAT
WAS LEFT OUT OF THE PICTURE IN
DOING THAT.
WE ALSO LOOK AT OTHER
JURISDICTIONS, FOR EXAMPLE, IN
THE U.K., WHICH DOESN'T
RECOGNIZE ABA AND EIBI AS
SCIENTIFICALLY VALID.
THEY TAKE A DIFFERENT APPROACH,
AND THE CHILDREN THERE AREN'T
RECEIVING THE SAME KIND OF
INTENSIVE TREATMENT, AND YET
KIDS ARE DOING OKAY THERE.
SO BEING OPEN TO LOOKING AT
WHETHER IT'S POSSIBLE AND HOW
IT'S POSSIBLE TO DO AUTISM
FUNDING, THAT'S JUST VERY
DIFFERENT FROM THE WAY THAT
WE'VE BEEN DOING IT.
I THINK THAT'S REALLY REFRESHING
OPPORTUNITY FOR US TO MAKE
CHANGE.

Steve says YOU WANT TO SPEAK TO
THE CRITICISMS YOU'VE HEARD FROM
THE TWO PARENTS?

says WHICH CRITICISMS ARE THEY?

Steve says WELL, TAKE YOUR PICK.
THERE ARE QUITE A FEW.

Anne says I WOULD LIKE TO SEE PEOPLE
BEING OPEN TO THE IDEA THAT I
KNOW THAT PEOPLE WHO PROVIDE A
SERVICE WANT TO OFFER A LOT OF
HOURS OF THEIR SERVICE.
THEY MAKE MORE MONEY THE MORE
HOURS THAT THEY BILL FOR.
AND I THINK IT'S IMPORTANT TO
START TO LOOK AT THAT SERVICE
MODEL AND WHAT'S BEING LEFT OUT
OF THAT SERVICE MODEL IN TERMS
OF ALL KINDS OF SERVICES THAT
ARE NOT BEING OFFERED BECAUSE
ALL OF THE MONEY IS GOING INTO
THESE INTENSIVE, INTENSIVE
PROGRAMS.
IS THAT REALLY WORKING?
IT'S REALLY NOT.

Steve says HMM.
ONE OF THE REASONS THAT THIS HAS
BECOME AS BIG A STORY AS IT HAS
BECOME IS BECAUSE THE MINISTER
RESPONSIBLE, LISA MACLEOD, SAID
SOME THINGS TO SOME PEOPLE IN A
BEHIND CLOSED DOORS MEETING AND
I JUST WANT TO TOUCH ON THAT FOR
A SECOND. SHELDON, LET'S BRING
THIS UP PLEASE. THIS IS FROM THE
TORONTO STAR EARLIER THIS MONTH:

A slate appears with a caption that reads "Four long years. In a memo to members Wednesday, the board of the Ontario Association for Behavioural Analysts said 'the minister and her staff requested that ONTABA provide a quote of support...and indicated that failure to do so would result in 'four long years' for the organization. It went on to say that 'the minister also indicated that if a quote of support was not forthcoming, a communication that behaviour analysts are 'self-interested' would be released from her office...in spite of the implied risk, the organization refused. One analyst who attended the January 29 meeting in advance of the government's autism announcement, said it was 'more akin to meeting with a mob boss than an elected official.' Kristin Rushowy and Laurie Monsebraaten, Toronto Star, February 13, 2019."

Steve says TRACI, YOU'RE A MEMBER OF THAT
ASSOCIATION.

The caption changes to "Managing Ontario's autism services. The minister's messaging."

Tracie says CORRECT.

Steve says I'D LIKE TO KNOW HOW
YOU REACTED WHEN YOU HEARD WHAT
LISA MACLEOD SAID.

Tracie says I REACTED AS ANY PROFESSIONAL
WOULD REACT, I THINK.
WE CANNOT ENDORSE AS A GROUP OF
BEHAVIOURAL ANALYSTS WE COULDN'T
ENDORSE SOMETHING THAT WE
COULDN'T UNDERSTAND AND WE
DIDN'T HAVE ENOUGH INFORMATION
ON AT THE TIME, SO THAT WAS ONE
OF THE BIGGEST PROBLEMS.
THE COMMENT ABOUT SELF-INTEREST
IS A PARTICULAR INTERESTING ONE
SINCE NO OTHER PROFESSION HAS
BEEN LABELLED AS
SELF-INTERESTED.
AND AS A CREDENTIALED
BEHAVIOURAL ANALYST, AND AS A
REGULATED SPEECH PATHOLOGIST, WE
ARE INTERESTED IN OUR CLIENTS
AND THE BEST OUTCOMES FOR OUR
CLIENTS.
THAT IS WHAT WE ARE SUPPOSED TO
DO.
WE ARE NOT SELF-INTERESTED IN
ANY WAY, NO MORE THAN ANY DOCTOR
WHO, YOU KNOW, TO GO BACK TO
YOUR EXAMPLE ABOUT MEDICAL OR
ANY MEDICINE, A DOCTOR WHO MAY
HAVE A CANCER PATIENT WOULD SAY,
YOU KNOW, FOR YOUR TYPE OF
CANCER YOU REQUIRE 28 UNITS OF
CHEMO.
YOU KNOW, THAT IS NO DIFFERENT
THAN WHAT BEHAVIOURAL ANALYSTS
DO.
WE ACTUALLY LOOK PER CHILD.
WE... IT WOULDN'T... WE WOULDN'T
GET THE RIGHT OUTCOMES IF WE
TOOK A HIGHER FUNCTIONING... AND
THAT'S A CONTROVERSIAL TERM AS
WELL, BUT A CHILD THAT WOULDN'T
NEED INTENSIVE BEHAVIOUR
ANALYSIS AND TRY TO DO THAT WITH
THEM.
WE WOULDN'T ACTUALLY GET THE
OUTCOMES THAT WE WOULD LIKE FOR
THAT CHILD.
AND IT WOULDN'T BE WHERE WE
WOULD NEED TO SPEND OUR TIME.

Steve says I WANT TO GET THE TWO
PARENTS TO REACT TO THE LISA
MACLEODD QUOTE.
AZED, PLEASE.

Azed says WELL, YOU KNOW, IT'S... IT
SPEAKS TO THE POLITICIZATION OF
THIS.
IT IS A POLITICAL MOVE.
IT HAS NOTHING TO DO WITH
HELPING OUR KIDS.
THESE KIND OF STRONG-ARM TACTICS
THAT WE HEAR ABOUT, THEY KIND OF
REVEAL THAT THEY THEMSELVES ARE
NOT CONFIDENT IN THE PROGRAM.
YOU KNOW, IF YOU ARE CONFIDENT
IN YOUR PROGRAM, YOU PUT IT
FORWARD AND YOU LET PEOPLE SAY
WHAT THEY WILL ABOUT IT AND THEN
YOU GO FROM THERE.
BUT YOU DON'T STRONG ARM PEOPLE
AND SAY GIVE US A QUOTE, BACK IT
UP OR ELSE, RIGHT?
AND IT'S CLEAR THAT THEY KNOW
IT'S NOT GOING TO WORK, YOU
KNOW?
AND THIS GETS BACK TO, YOU KNOW,
HOW WE CLASSIFY AUTISM.
FIRST OF ALL, AUTISM IS BIG.
IT'S A SPECTRUM, RIGHT?
SO MANY DIFFERENT... I MEAN,
I'VE BEEN AROUND PEOPLE WITH
AUTISM NOW FOR 15 YEARS.
I KNOW A LOT OF DIFFERENT
FAMILIES.
I KNOW A LOT OF DIFFERENT PEOPLE
WITH AUTISM.
SOME OF THEM I COULD HAVE A NICE
CHAT WITH.
OTHERS CAN'T SPEAK FOR
THEMSELVES.
MY SON CAN'T SPEAK FOR HIMSELF.
I HAVE TO SPEAK FOR HIM.
ME AND MY WIFE ARE HIS VOICE,
RIGHT?
AND I HEARD SOMEBODY ELSE SAY,
YOU KNOW, PARENTS OF KIDS WITH
AUTISM ARE PROFESSIONAL
PROTESTERS.
IT REALLY BOTHERED ME.
IT'S NOT THAT WE'RE PROFESSIONAL
PROTESTERS.
WE DON'T WANT TO PROTEST.
WE'RE TIRED.
WE WORK... WE BOTH WORK
FULL-TIME JOBS AND, YOU KNOW,
IT'S A LOT OF WORK TO RAISE A
CHILD WITH AUTISM.
BELIEVE ME, WE'D LIKE NOTHING
BETTER THAN TO JUST SIT AT HOME
AND WATCH NETFLIX AND HAVE SOME
SNACKS, RIGHT, BUT WE CAN'T,
RIGHT?
WHEN YOU CAN SPEAK FOR YOURSELF
AND YOU CAN FUNCTION SOMEWHAT
WELL IN SOCIETY, THAT'S ONE
THING.
THAT'S ONE LEVEL.
NOT SAYING YOU DON'T NEED
SERVICES, YOU DO.
BUT IT'S DIFFERENT FOR KIDS
WHO... AND ADULTS WHO CAN'T
SPEAK FOR THEMSELVES AND ARE NOT
GOING TO BE ABLE TO EVER REALLY
FUNCTION IN OUR SOCIETY.
IT'S LIKE PUTTING THE SQUARE PEG
IN THE ROUND HOLE.

The caption changes to "Azed Majeed. @Basement09."

Steve says HANNAH, I'M CURIOUS TO
YOUR REACTION WHEN YOU HEARD THE
MINISTER I GUESS THREATENED IS
THE RIGHT WORD IT WOULD BE FOUR
LONG YEARS FOR YOUR ORGANIZATION
IF YOU DON'T GIVE US A GOOD QUOTE
FOR WHAT WE'RE DOING.

The caption changes to "Hannah Rasmussen. @StandingHannah."

Hannah says WELL, MY REACTION WAS I
POSTED THAT ON TWITTER AND IT
KIND OF BLEW UP BECAUSE EVERYONE
WAS APPALLED AT WHAT THEY TRIED
TO DO.
I... ESPECIALLY THE
SELF-INTERESTED AND THE FOUR
LONG YEARS.
WHEN OUR DAUGHTER WAS FIRST
DIAGNOSED, WE WERE LEFT
FLOUNDERING BECAUSE WE WERE ON
THE WAIT LIST AND WE DIDN'T KNOW
WHAT TO DO, SO I TOOK HER TO
PRIVATE CLINICS AND SAID SHE
NEEDS HELP.
LET'S GET HER INTO ABA, AND THEY
ASSESSED HER AND SAID, NO, SHE
DOESN'T BELONG IN ABA.
SHE DOESN'T NEED THAT HELP.
SHE NEEDS OTHER THINGS.
HERE ARE SOME OTHER SUGGESTIONS.
TO ME THAT IS THE OPPOSITE OF
SELF-INTERESTED.
AND TO THREATEN AN ORGANIZATION
AGAIN IF YOU CAN'T SHOW US WHAT
THE PROGRAM IS AND YOU WANT A QUOTE,
THAT MEANS EITHER... I
THINK THEY DON'T ACTUALLY KNOW
WHAT THE PROGRAM IS.
I THINK THEY HAVEN'T DONE THEIR
HOMEWORK, AND IT'S TRICKLING OUT
BECAUSE THEY ARE MAKING IT UP AS
THEY GO.
OR THEY KNOW IT'S GOING TO BE
SUCH GARBAGE THAT THEY CAN'T
SUPPORT IT.

Steve says WELL, LET ME PLAY
DEVIL'S ADVOCATE HERE FOR A
SECOND.
EVERY MINISTER WHO MAKES A NEW
ANNOUNCEMENT, PARTICULARLY WHEN
THE ANNOUNCEMENT IS DESIGNED
AROUND SOMETHING AS
CONTROVERSIAL AS THIS SUBJECT
AND THE ISSUE WAS CONTROVERSIAL
BEFORE WHEN THE WYNNE GOVERNMENT
HAD IT AND THE MCGUINTY
GOVERNMENT HAD IT.
IT'S ALWAYS BEEN A VERY TOUGH
FILE, REGARDLESS OF THE
MINISTER.
DO WE HAVE ANY UNDERSTANDING FOR
A MINISTER WHO MAY HAVE USED THE
WRONG LANGUAGE AND LET'S
ESTABLISH THE FACT THAT SHE
APOLOGIZED FOR HAVING SAID IT,
DO WE HAVE ANY SYMPATHY FOR A
MINISTER WHO IS TRYING TO PUT
THE BEST FACE... PUT THE BEST
FOOT FORWARD ON SOMETHING THIS
CONTROVERSIAL?
MARG?

The caption changes to "Margaret Spoelstra. @MSAutismOntario."

Margaret says I THINK I'D HAVE TO AGREE
WITH THIS BEING A POLITICAL
ISSUE AND THINKING ABOUT YOUR
COMMENTS THERE, THAT THIS HAS
NEVER BEEN AN EASY FILE.
I THINK ALL OF US WHO HAVE BEEN
IN THIS FIELD FOR MANY YEARS,
THE FAMILIES WHO HAVE BEEN
AROUND SO MANY CHANGES TO THE
AUTISM PROGRAM, IT'S A CONSTANT
SERIES OF A REVOLVING DOOR OF
NEW THINGS TO UNDERSTAND AND
UPTAKE.
SO I THINK FOR ANY PERSON IN A
POLITICAL LEADERSHIP POSITION WE
WOULD START TO SAY... WE WOULD
AGREE THAT THIS IS NOT AN EASY
THING.
AT THE SAME TIME, I THINK IT'S
REALLY IMPORTANT THAT ANY
GOVERNMENT REALLY TAKE THE TIME
TO LISTEN.
LISTEN TO FAMILIES, LISTEN TO
THE PROFESSIONALS.

Steve says DO YOU THINK THEY DID
IN THIS CASE?

Margaret says I DON'T KNOW HOW FULLY.
I KNOW THAT SOME PARENTS WERE
SPOKEN TO AND SOME PEOPLE HAD AN
OPPORTUNITY TO HEAR SOME
INFORMATION ABOUT THAT.

Steve says I MEAN THEORETICALLY,
AMY FEE, WHO IS THE
PARLIAMENTARY ASSISTANT, HAS
AUTISTIC CHILDREN.

Margaret says FOR SURE SHE WOULD BE ABLE TO
SPEAK TO THAT FROM A PERSONAL
STORY.
BUT I THINK BECAUSE OF THE
COMPLEXITY AND THE WIDE RANGE ON
THE AUTISM SPECTRUM THAT YOU
REALLY NEED A WIDE RANGE OF
VOICES.
IT'S ACTUALLY VERY INTERESTING
TO SEE THIS CROWD SITTING HERE
TODAY BECAUSE THERE'S A WIDE
RANGE OF UNDERSTANDING.
AND THAT THE ANSWERS REALLY HAVE
TO BE INDIVIDUALLY FOCUSED.
BUT WHEN YOU THINK THAT WAY,
THAT MEANS YOU NEED A LOT OF
VOICE TOGETHER TO SAY WHAT IS A
GOOD PROGRAM THAT IS EQUITABLE
FOR WHAT THE NEEDS OF THAT CHILD
ARE, AND THAT'S A COMPLEX THING.
IT'S NOT A ONE-STOP SHOP.
AND IT CHANGES ALL THE TIME.

The caption changes to "Managing Ontario's autism services. Solving the problem of the waitlist."

Steve says ANNE, HELP US OUT WITH
SOME OF THE BACKGROUND HERE.
I WANT TO GO BACK TO THE
ORIGINAL PROBLEM.
WE SAID OFF THE TOP THERE'S MORE
THAN 20,000 PEOPLE WHO ARE ON A
WAIT LIST WHO ARE TRYING TO BE
DIAGNOSED... A WAIT LIST FOR
SERVICES.
WHY WERE THERE SO MANY FAMILIES
ON THAT WAIT LIST TO BEGIN WITH?

The caption changes to "Anne Borden. @A4AOntario."

Anne says WELL, YOU'D HAVE TO ASK THE
POLICYMAKERS ABOUT THAT.
BUT PART OF THE REASON IS THAT
COSTS WERE SO HIGH FOR
INDIVIDUAL THERAPY AND THE
DEMANDS FOR INDIVIDUAL THERAPY
REQUIRED SUCH A HUGE NUMBER OF
HOURS.
I LIKE MARGARET... I'M GOING TO
PIVOT OFF WHAT YOU WERE SAYING
ABOUT CONSULTATION.
FOR THE LAST PROGRAM, THE
CONSULTATION WASN'T, IN MY VIEW,
MEANINGFUL IN TERMS OF WHO THEY
CONSULTED, EVEN THE WAY THAT
THEY COLLECTED DATA WASN'T
MEANINGFUL.
THEY KIND OF TOOK DATA THAT WAS
GIVEN TO THEM BY LOBBYISTS.
THEY DIDN'T COLLECT THEIR OWN
DATA, AND IN MAKING THE NEW
PLAN, AND I THINK THE POLICY IS
DYNAMIC.
I DON'T THINK IT'S ALL SET IN
STONE.
IT'S GOING TO CHANGE.
IN MAKING NEW PLANS IN THE NEXT
FOUR YEARS, EIGHT YEARS, HOWEVER
LONG THEY ARE MAKING THESE
PLANS, THEY HAVE AN OPPORTUNITY
NOW TO COLLECT THEIR OWN DATA
AND THEY HAVE THE OPPORTUNITY TO
REALLY MEANINGFULLY CONSULT NOT
JUST WITH THE LOUDEST VOICES IN
THE LOBBIES BUT WITH AUTISTIC
PEOPLE AND AUTISTIC
ORGANIZATIONS WITH A RANGE OF
SERVICE NEEDS.
SO I'M HOPEFUL THAT THAT WILL
HAPPEN.

Azed says PART OF THAT IS THAT AUTISM,
WE KEEP EXPANDING OUR
UNDERSTANDING OF WHAT AUTISM IS.
YOU KNOW, YOU GO BACK 30 YEARS,
40 YEARS, PEOPLE WEREN'T BEING
DIAGNOSED BECAUSE THE CRITERIA
WAS DIFFERENT, RIGHT?
SO THE WAIT LIST IS PARTLY
BECAUSE OF THAT.
WE'RE GETTING BETTER
UNDERSTANDING OF HOW TO SCREEN
FOR AUTISM AT YOUNGER AGES,
WHICH IS ALL GOOD STUFF.
THE OTHER ISSUE HERE IS THAT
AUTISM IS A MYSTERIOUS
CONDITION, RIGHT?
AND THE MEDICAL COMMUNITY REALLY
DOESN'T HAVE A SENSE OF... IT
CAN'T JUST... IT'S NOT LIKE
OTHER MEDICAL DIAGNOSES, YOU
KNOW.
HERE'S SOME PILLS, HERE'S
SOME... YOU KNOW, IT'S
THERAPY-BASED, RIGHT?
IT'S BEHAVIOUR.
SO IT'S ABOUT CATEGORIZING IT
PROPERLY, RIGHT?
AND THEY DON'T KNOW HOW TO DO
THAT BECAUSE THEY KIND OF GO WE
DON'T KNOW WHAT THIS IS.
LIKE, WE'VE HAD OUR SON FOR 15
YEARS.
WE'VE BEEN THROUGH IT ALL,
RIGHT?
AND WE ARE STILL PRETTY MUCH IN
THE DARK IN TERMS OF CLEAR
UNDERSTANDING OF WHAT'S CAUSING
THIS, YOU KNOW, HOW TO DEAL WITH
THIS.
THEY'D LIKE TO THROW A LOT OF
MEDICATIONS AT YOU OR DIFFERENT
THERAPIES.
NOBODY SEEMS TO KNOW, AND I
THINK THIS IS A BIG ISSUE IN WHY
THERE'S A BIG WAIT LIST.
THE BLANKET SOLUTION EVERYTHING.
THEY JUST KIND OF THROW SOME
MONEY AT YOU OR THROW SOME
BEHAVIOUR AT YOU AND WE'LL SEE
IF THAT STICKS OR THIS STICKS.
THEY ARE TRYING.
I THINK THE BETTER APPROACH
WOULD BE, AGAIN, AS I SAID AT
THE BEGINNING, IS WE NEED TO
RE-CATEGORIZE AUTISM AS A
MEDICAL CONDITION COVERED BY
OHIP.
THIS IS A MEDICAL ISSUE.

The caption changes to "Connect with us: @theagenda, Facebook, agendaconnect@tvo.org and Instagram."

Steve says IF YOU RECLASSIFIED
THIS AS A MEDICAL CONDITION
COVERED BY OHIP, BASICALLY WHICH
MEANS SERVICE ON DEMAND, THE
COST OF THAT WOULD BE DOUBLE IF
NOT TREBLE, AND THIS IS A
GOVERNMENT THAT IS TRYING TO
SAVE MONEY, NOT SPEND MORE
MONEY.

Azed says WELL, I WOULD DISAGREE WITH
THAT.
I THINK AGAIN IT'S NEEDS-BASED.
I THINK OUT OF THE 20... LET'S
SAY THERE'S 32,000 KIDS OR
SOMETHING...

Steve says I THINK IT'S 40,000.

Azed says OKAY, SO A THIRD OF THOSE
KIDS ARE PROBABLY HIGH NEEDS
FULL SERVICE KIND OF KIDS,
RIGHT?
IT'S NOT LIKE WHAT... YOU KNOW,
THE KIND OF THE DRAMA HERE IS
THAT IT'S GOING TO COST US SO
MUCH MONEY, IT'S GOING TO COST
US SO MUCH MONEY.
I THINK THE MONEY... IT'S GOING
TO COST US MONEY REGARDLESS.
I MEAN, BECAUSE WHAT HAPPENS TO
THESE KIDS IF THEY DON'T GET THE
RIGHT SERVICE?
YOU KNOW, THEY AGE OUT AND THEN
THEY HAVE TO BE TAKEN CARE OF IN
ANOTHER WAY, IN A TERRIBLE WAY,
BASICALLY PUTTING THEM EITHER IN
INSTITUTIONS OR GROUP HOMES.
YOU'RE PAYING FOR THAT TOO,
RIGHT?
BUT WHAT YOU REALLY WANT TO DO
IS HAVE THESE KIDS GROW UP TO BE
AS PRODUCTIVE, LIVE A LIFE
THAT'S AS PRODUCTIVE, AS
DIGNIFIED AND SAFE AS POSSIBLE.

Steve says ANNE AND THEN HANNAH.

Anne says I'D LIKE TO JUMP IN TO SAY
THAT WE CAN'T RECLASSIFY AUTISM
AS A MEDICAL DISORDER BECAUSE
THE RESEARCH AND SCIENTIFIC
COMMUNITY DOESN'T RECOGNIZE THAT
AUTISM IS A MEDICAL DISORDER
BECAUSE AUTISM ISN'T A MEDICAL
DISORDER.
SO YOU WOULD BE ASKING THE
ENTIRE FRAMEWORK FOR THE
SCIENTIFIC COMMUNITY TO CHANGE.

Azed says BUT HOW DO YOU SAY IT'S NOT A
MEDICAL DISORDER?

Anne says IT'S NOT A MEDICAL DISORDER.

Azed says IT'S A...

Anne says IT'S IN THE...

Azed says IT'S... YOU'RE BORN WITH IT.

Anne says IT'S IN THE DIAGNOSTIC
STATISTICAL MANUAL.
IT'S NOT A DISEASE.
AND SO TO TOTALLY REDO THAT JUST
HERE IN ONTARIO WOULDN'T MAKE
SENSE BECAUSE THAT'S NOT HOW THE
REST OF THE WORLD IS...

Azed says THAT'S ACTUALLY NOT TRUE.
IN THE UNITED STATES, FOR
EXAMPLE, 48 OF THE STATES DO
COVER THROUGH PRIVATE AND
PUBLIC, A MIX, RIGHT, ALL THE
SERVICES.
IT'S NOT TRUE THAT IT'S NOT
COVERED IN OTHER PLACES.
IT IS, AND I DON'T HAVE A LIST
IN FRONT OF ME, BUT IT'S TRUE.
YOU CAN RECLASSIFY IT.
IT'S ALSO COME UP TWICE AS
PRIVATE MEMBER'S BILLS, I THINK
IT WAS GLENN THIBAULT WHO DID
IT IN 2009.
WHY IT GOT DEFEATED I'M NOT
SURE.
BUT THIS IS NOT A NEW IDEA, AND
I THINK THAT'S A CONTROVERSIAL
STATEMENT THAT IT'S NOT A
MEDICAL DISORDER.

Anne says I THINK IT'S CONTROVERSIAL TO
SAY IT IS.

Azed says YOU GET DIAGNOSED BY A
DOCTOR.

Hannah says NOT TO SPEAK TO THIS PART
BECAUSE THAT'S NOT MY AREA, BUT
I USED TO TEACH OPERATIONS
MANAGEMENT, AND I LOVED
SCHEDULING AND LISTS.
WHEN MY DAUGHTER WAS FIRST
DIAGNOSED AND THEN MY SON AND MY
DAUGHTER WAS MISDIAGNOSED, THEY
PUT THEM BOTH ON THE SAME LIST
AND WE HAD TO WAIT FOR SERVICE.
MY DAUGHTER IS... THERE'S NO...
FOR LACK OF A BETTER TERM, HIGH
FUNCTIONING.
SHE DOES NOT NEED TO BE ON THE
SAME LIST FOR SERVICES AS MY SON
WHO IS NON-VERBAL WHO HAS VERY
HIGH NEEDS AT THIS STAGE.
AND I WAS APPALLED TO FIND OUT
THAT ALL OF THOSE KIDS WERE JUST
ON ONE LIST AND THEY WERE JUST
GOING DOWN THEM ONE BY ONE AND
THEY DIDN'T MEET ANYONE OUT AND
SAY, YOU KNOW WHAT, A LITTLE BIT
OF SPEECH, A LITTLE BIT OF OT
AND YOU'RE GOOD FOR A FEW YEARS,
COME BACK AND TALK TO US WHEN
THINGS PROGRESS, IF THINGS
PROGRESS, AND VICE VERSA.
LIKE, IT WAS JUST... IT WAS SO
BADLY MANAGED, AND...

Steve says SO THERE'S GOT TO BE A
BETTER WAY TO ORGANIZE THIS, YOU
THINK.

Anne says YEAH, THAT WAS A LIBERALS,
AND IT'S FUNNY BECAUSE THE WAY
THE STATEMENT WAS READ FROM LISA
MACLEOD, EVERYTHING THAT THEY'VE
TALKED ABOUT, THEY ARE ACTING
LIKE WHAT WE WANT TO DO IS GO
BACK TO WHAT THE LIBERALS GAVE
US.
AND WE DON'T.
MY SON'S BEEN ON THE WAIT LIST
FOR HALF OF HIS LIFE.
WE DON'T WANT TO GO BACK TO
THAT.
WE WANT TO MAKE IT BETTER.
BUT WHAT THEY DID WAS... AND ONE
OF MY FRIENDS MADE THIS ANALOGY
FOR ME.
THEY TOOK A COFFEE CUP THAT HAD
THE HANDLE BROKEN OFF AND THEY
SMASHED IT WITH A HAMMER AND
SAID, THERE, WE FIXED IT.
AND... I MEAN, IT'S A GREAT
TIME, AS ANNE SAID, TO
RE-ENVISION EVERYTHING, BUT I
CERTAINLY DON'T GET THE
IMPRESSION THAT THAT ARE GOING
ANYWHERE OTHER THAN WE'RE NOT
PAYING FOR THIS, YOU GUYS RUN...
MAYBE YOU SHOULD MORTGAGE YOUR
HOUSE.

says LET'S START WITH THAT,
TRACIE.
IF WE'RE TRYING TO REIMAGINE HOW
THIS COULD ACTUALLY BE DONE
BETTER, WHERE WOULD WE START?

The caption changes to "Tracie Lindblad. @MonarchHouseON."
Tracie says I THINK WE'D START BY
ACTUALLY FINDING OUT WHO IS ON
THAT WAIT LIST, BECAUSE WE DO
KNOW OF THAT 23,000 THEY KEEP
USING THAT NUMBER, THERE ARE
MANY, MANY INDIVIDUALS WHO HAVE
ALREADY HAD SERVICES.
THEY HAVE ALREADY HAD SPEECH
THERAPY IN THE 8K FUNDING.
THEY HAVE HAD OT IN THE UNDER 8K
FUNDING THAT WAS IN THE PREVIOUS
GOVERNMENT.
MANY OF THEM HAVE HAD ABA GROUP
PARENT TRAINING AND SOME OF THEM
HAVE EVEN HAD INTENSIVE
SERVICES.
SO I THINK ALONG WHAT YOU BOTH
ARE SAYING, AND EVEN ANNE, WE
NEED... THAT 23,000, WE NEED TO
TRIAGE THAT LIST AND ACTUALLY
FIGURE OUT WHO IS... WHO IS
THERE AND WHAT DO THEY NEED.
AND THEN I REALLY DO THINK THAT
WE NEED TO GET THIS OUT OF ONE
MINISTRY AND LOOK TO SEE WHAT
PART IS MEDICAL... SO WHAT PART
BELONGS UNDER MINISTRY OF
HEALTH.
MAYBE OT, SOP.

Steve says SO MANY ACRONYMS HERE,
TRACIE.

Tracie says SPEECH PATHOLOGY,
OCCUPATIONAL THERAPY.
WELCOME TO MY WORLD.
WE NEED TO LOOK AT MINISTRY OF
EDUCATION BECAUSE CHILDREN SPEND
MOST THEIR TIME THERE, AND WE
KNOW IT'S WORKING IN OTHER
PLACES BETTER, THAT THEY DON'T
REQUIRE AS MUCH INTENSIVE
BEHAVIOUR SUPPORT WHILE THEY ARE
YOUNG BECAUSE THE CHILDREN THAT
NEED IT GET IT WHEN THEY ARE
YOUNG, BUT THEN THEY GO TO
SCHOOL AND THEIR SCHOOL SYSTEMS
ARE SET UP TO SUPPORT THEM IN
SCHOOL.
THEY ARE IN SCHOOL UNTIL THEY
ARE 21.
THAT'S A LONG TIME TO HAVE SOME
REALLY GOOD SERVICES.
MINISTRY OF EDUCATION HAS NOT
BEEN A PLAYER IN THIS GAME TO
DATE.

Steve says DOES THAT SEEM ODD TO
YOU?

Tracie says VERY ODD.
WE ARE ALL WAITING.

Steve says MARG, IF YOU WERE
REIMAGINING A BETTER WAY TO DO
THIS, WHERE WOULD YOU START?

Margaret says THE VERY THINGS THAT TRACIE
IS SAYING, BUT THE ISSUE ABOUT
EDUCATION IS A REALLY IMPORTANT
ONE.
BECAUSE I THINK A PROGRAM WHEN
YOU HAVE PROGRAMS THAT ARE IN
SILOS AND THEY ARE NOT REQUIRED
NECESSARILY TO WORK TOGETHER OR
TO THINK ABOUT WAYS TO MAKE...
TO SHARE THE RESOURCES THAT ARE
THERE, WE HAVE OPPORTUNITIES
THAT WE JUST HAVE NOT AVAILED
OURSELVES OF IN THE PROVINCE
YET, AND RIGHT NOW FOR MANY OF
THE FAMILIES WHO HAVE BEEN
RELYING ON INTENSIVE HOURS, ONE
OF THEIR FEARS IS THAT IF THEY
GO TO SCHOOL THAT THEIR CHILD IS
NOT GOING TO HAVE ACCESS TO THE
RESOURCES THROUGH PROGRAMS LIKE
THIS.
WITHIN THE SCHOOL SETTING, WHERE
KIDS ARE SPENDING MOST OF THEIR
DAY, AS TRACIE SAID.
WE REALLY NEED TO LOOK AT WHERE
ARE KIDS, AND FAMILIES TOLD US
THROUGH SURVEYS THAT WE HAD DONE
THAT THEY REALLY WANT TO HAVE
ACCESS TO THESE PROGRAMS WHERE
THE KIDS SPENT THE MAJORITY OF
THEIR TIME, AND THAT IS AT
SCHOOL BUT ALSO AT HOME AND IN
THE COMMUNITY.

Anne says CAN I BUILD OFF THAT REALLY
QUICKLY TO SAY THAT THE ONTARIO
HUMAN RIGHTS COMMISSION, I DON'T
KNOW IF EVERYONE SAW THE REPORT
THEY CAME OUT WITH IN THE FALL,
BUT THE ONTARIO HUMAN RIGHTS
COMMISSION DID A STUDY THAT
SHOWED THAT SPECIAL EDUCATION IN
ONTARIO HASN'T MEANINGFULLY
CHANGED IN 40 YEARS.
SPECIAL EDUCATION IN ONTARIO
HASN'T MEANINGFULLY CHANGED IN
40 YEARS.
SO IF WE REALLY WANT TO GET
SOMETHING GOING, WE NEED TO TAKE
IT OUT OF ONE MINISTRY AND ONE
PORTFOLIO.
WE ALL SEEM TO AGREE ON THAT.
AND LOOK AT HOW CAN WE MAKE OUR
SCHOOLS AND OUR SPECIAL
EDUCATION, WHICH IS VERY MUCH A
SILO RIGHT NOW, AND IT'S NOT A
PLEASANT PLACE TO BE A LOT OF
THE TIME.
HOW CAN WE MAKE IT TRULY
INCLUSIVE?
AND THOSE... THESE ARE IDEAS
THAT WE REALLY HAVEN'T BEEN
EXPLORING IN POLICY.

Steve says MARG, IF SOMEHOW THE
BUDGET FOR THIS WERE MAGICALLY
DOUBLED FROM I THINK IT'S, WHAT,
321 MILLION DOLLARS ANNUALLY NOW TO
LET'S JUST SAY 750 MILLION DOLLARS A
YEAR, IS THERE EVEN ENOUGH
CAPACITY IN THE CURRENT SYSTEM
TO PROVIDE THE TREATMENT THAT IS
NEEDED?

Margaret says UMM, IT'S NOT EVEN ACROSS THE
PROVINCE.
SO DEPENDING ON WHERE YOU LIVE,
YOU MAY HAVE ACCESS TO
THERAPISTS IN DIFFERENT
COMMUNITIES, AND IN OTHER PLACES
WHERE PARENTS DON'T ACTUALLY
HAVE A CHOICE BECAUSE THERE
AREN'T ENOUGH THERAPISTS IN
THOSE COMMUNITIES OR PEOPLE WHO
ARE QUALIFIED TO PROVIDE THESE
SERVICES.

Steve says SO ARE THE COLLEGES
TRAINING MORE THERAPISTS GOING
FORWARD?

Margaret says THEY HAVE BEEN.
THEY HAVE BEEN VERY MUCH ON
BOARD ABOUT THIS.
WE'VE SEEN THIS THROUGH MANY OF
THE PROGRAMS AND TRAINING LOTS
OF INSTRUCTOR THERAPISTS, BUT
THEY NEED TO WORK UNDER
SUPERVISION, AND THAT'S AN AREA
WHERE WE'RE LACKING STILL IN
CAPACITY.

Steve says WHAT DO YOU WANT TO
SEE AT THIS POINT?
I MEAN, WE ARE WHERE WE ARE.
WE HAVE A NEW MINISTER WITH A
NEW APPROACH, AND YOU KNOW, MANY
FITS AND STARTS ALONG THE WAY TO
BE SURE, BUT WE ARE WHERE WE
ARE, SO WHAT DO YOU WANT TO SEE
NOW?

The caption changes to "Managing Ontario's autism services. What families need."
Hannah says WELL, I MEAN, WE'VE SAID IT
TIME AND TIME AGAIN.
EVIDENCE-BASED.
WE DON'T WANT THE MINISTER TO
DECIDE WHAT SORT OF TREATMENT
OUR CHILDREN GET.
WE WANT THE EXPERTS TO GET IT.
WE WANT THE AUTISTIC ADULTS IN
THE ROOM WITH US TO HELP BECAUSE
IN MANY WAYS THEY GET OUR KIDS,
THEY UNDERSTAND OUR KIDS SO MUCH
MORE THAN THE PARENTS DO.
ESPECIALLY... I MEAN, WE'RE
STILL VERY NEW INTO THIS, AND I
SPEND A LOT OF TIME ON TWITTER
ACTUALLY ASKING THE AUTISTICS
FOR ADVICE, AND THEY GIVE
PHENOMENAL ADVICE.
AND THEY YELL AT ME WHEN I ASK
THE WRONG QUESTION BECAUSE THEY
ARE... THEY KNOW THEIR STUFF.
SO WE WANT THAT... WE WANT
EVERYONE AT THE TABLE TO FIGURE
THIS OUT.
WE'RE NOT... THE LAST SYSTEM
WASN'T GREAT.

Steve says BUT THEY HAD SAID THIS
IS IT.
THEY HAVE SAID THIS IS THE NEW
PROGRAM, PERIOD, FULL STOP, WE
ARE NOT REVISITING THIS.
THAT'S WHAT THEY'VE SAID.

Hannah says YEAH.

Steve says IF THAT ENDS UP BEING
THE CASE.

Hannah says THEN THEY ARE GOING TO BE A
ONE-TERM GOVERNMENT.
LIKE, THIS IS... I DON'T THINK
THEY REALIZE HOW VOCAL WE ARE
AND HOW GOOD...

Steve says THEY ARE FINDING THAT
OUT.

Hannah says PARENTS OF AUTISTIC CHILDREN.
AND AUTISTIC PARENTS.
WE ARE VERY MOTIVATED.
AND WE GOT THE LIBERALS TO
CHANGE.
I'M PRETTY SURE AT SOME POINT
THEY WILL HAVE TO COME TO THE
TABLE.

Steve says I'D LIKE TO KNOW,
AZED, HOW MUCH CONFIDENCE YOU
HAVE IN THE CURRENT SOCIAL
SERVICES MINISTER, LISA MACLEOD,
TO FIX THIS.

Azed says WELL, I MEAN, LOOK, YOU KNOW,
I DON'T KNOW... I DON'T HAVE A
LOT OF CONFIDENCE FROM WHAT I'VE
SEEN SO FAR I DON'T HAVE A LOT
OF CONFIDENCE IN HER FIXING IT.
I JUST THINK, AGAIN, THIS IS A
CYNICAL GOVERNMENT.
I THINK THEY ARE USING THIS AS A
KIND OF POLITICAL STATEMENT TO
SAY, LOOK, WE'RE CLEARING THE
WAIT LIST.
BUT YOU KNOW, YOU CAN ACHIEVE A
RESULT AND DO A LOT MORE DAMAGE
THAN PEOPLE ARE REALLY
REALIZING, AND IT CAN LOOK GOOD
ON PAPER AND NOT BE SO GOOD, AND
I THINK WE'RE GOING TO SEE THE
RESULTS OF THIS IN THE NEXT FEW
YEARS, IF THIS GOES THROUGH, AND
IT LOOKS LIKE IT WILL.
IT'S GOING TO BE BAD.
IT'S GOING TO BE BAD FALLOUT,
YOU KNOW, BECAUSE IT'S TRUE,
PARENTS OF KIDS WITH AUTISM ARE
FIGHTERS.

Steve says WHAT'S GOING TO HAPPEN
TO YOUR SON DJANGO WHEN HE TURNS
18 YEARS OLD?

Azed says WELL, HE'S IN OAKWOOD SCHOOL
RIGHT NOW.
SO DJANGO WAS PART OF THE EARLY
T PASS PROGRAM.
LUCKILY HE GOT DIAGNOSED EARLY,
AND THAT WAS... I GUESS THAT WAS
UNDER THE LIBERALS, RIGHT?
YES.
SO THEY HAD THE T PASS PROGRAM,
AND HE WENT THERE UNTIL HE WAS
SIX.
AT THAT POINT THEY WERE SAYING
AFTER SIX WE'RE NOT GIVING YOU
ANOTHER DIME FOR IBI.
THEY CHANGED THAT AFTERWARDS
BECAUSE OF PROTEST.
BUT HE WENT TO... LUCKILY DJANGO
GOT INTO BEVERLY SCHOOL ON
BEVERLY STREET DOWNTOWN TORONTO,
BEST SCHOOL ON THE PLANET, OKAY?
BUT NOT EVERYBODY'S LUCKY ENOUGH
TO GO TO BEVERLY SCHOOL, RIGHT?

Steve says HOW LONG CAN HE STAY
THERE?

Azed says HE WAS THERE UNTIL HE WAS IN
GRADE 8.
I GUESS... THREE YEARS AGO, AND
THEN HE MOVED TO OAKWOOD.
SO NOW HE'S IN OAKWOOD UNTIL 21.

Steve says AT SOME POINT HE AGES
OUT.

Azed says HE AGES OUT, AND THEN THE
PROGNOSIS DOESN'T LOOK GOOD FOR
US AT THAT POINT.
WE WORRY A LOT.
WE TALK A LOT ABOUT WHAT ARE WE
GOING TO DO, AND SOME OF IT IS
THAT PARENTS, AND I KNOW OTHER
PARENTS WHO HAVE HAD TO START
THEIR OWN SCHOOLS, HAVE HAD TO
START THEIR OWN COMMUNITIES, YOU
KNOW.
WE TALK ABOUT THIS KIND OF
THING.
WHAT ARE WE GOING TO DO?
YOU KNOW, WHEN WE GET OLDER AND,
YOU KNOW, THERE'S NO PROGRAMS,
THE IDEA OF STICKING YOUR KID
INTO A GROUP HOME IS JUST REALLY
FRIGHTENING, AND YOU KNOW, WE'RE
LOST.
SO WE'RE NOT GETTING A LOT OF
SUPPORT FROM THE GOVERNMENT ON
THESE ISSUES.

Steve says I'M LITERALLY DOWN TO
MY LAST 30 SECONDS HERE.
MARG, I WANT YOU TO TELL US IF
IN FACT LISA MACLEOD STAYS TRUE
TO WHAT SHE SAID AND THIS IS IT
AND THERE ARE NO CHANGES COMING
FORWARD, WHAT DOES THAT PORTEND,
IN YOUR VIEW?

Margaret says I THINK IT MEANS THAT SOME
CHILDREN WILL NOT GET THE
SERVICES THAT THEY NEED, MANY.
MANY WILL NOT GET WHAT THEY
NEED.
BUT OTHERS WILL HAVE MONEY FOR
THE FIRST TIME TO SPEND ON SOME
THINGS.
AND SO I THINK THAT, FOR SOME
FAMILIES, WILL BE A DIFFERENCE
THAT THEY'VE NOT EXPERIENCED
BEFORE.
BUT WHAT I WOULD HOPE IS THAT
THEY WOULD LISTEN TO THE DATA AS
IT ROLLS OUT.
IF THIS PROGRAM IS GOING FORWARD
AS IT IS, THAT THEY... WE HAVE
AN OPPORTUNITY TO FIND OUT WHAT
PARENTS ARE ACTUALLY WAITING FOR
AND WHAT THEY ARE THINKING ABOUT
SPENDING THEIR MONEY ON.
AND THAT THAT INFORMATION WILL
INFORM THE PROGRAM AS IT ROLLS
OUT.

Steve says GREAT.
I WANT TO THANK ALL OF YOU FOR
COMING IN TONIGHT AND HELPING US
OUT WITH THIS. YOU FLEW ALL THE
WAY IN FROM OTTAWA, WHICH WE'RE
GRATEFUL FOR AS WELL.

Hannah says I DID.

says THANKS SO MUCH, EVERYBODY AND
GOOD LUCK TO YOU ALL.

They all say THANK YOU.

The caption changes to "Managing Ontario's autism services. Producer: Sandra Gionas. @sandragionas."

Watch: Managing Ontario's Autism Services