Transcript: The Agenda in the Summer: A New Day for the Autism File | Jul 31, 2019

Nam sits in the studio. She's in her early forties, with shoulder length curly brown hair. She's wearing glasses, a pale blue blazer and an indigo shirt.

A caption on screen reads "Revamping the Ontario Autism Program."

Nam says THIS WEEK, THE
PROVINCIAL GOVERNMENT DID A
U-TURN, ON ITS EARLIER
RE-VAMP OF PROGRAMS AND SERVICES
FOR CHILDREN WITH AUTISM.
TO FIND OUT MORE, WE'RE JOINED
BY:
MIKE LAKE, THE CONSERVATIVE
MEMBER OF PARLIAMENT FOR
EDMONTON-WETASKIWIN AND A
LONG-TIME ADVOCATE FOR AUTISM AWARENESS...

Mike is in his late forties, clean-shaven, with short gray hair. He's wearing a black suit and a pale blue shirt.

Nam continues MARGUERITE SCHABAS, VICE
PRESIDENT WITH THE ONTARIO
AUTISM COALITION.

Marguerite is in her fifties, with brown hair in a bun. She's wearing glasses, a gray short-sleeved sweater and a thin necklace.

Nam continues BOTH, ARE PARENTS OF CHILDREN ON
THE AUTISM SPECTRUM.
AND, CAROLINE ALPHONSO, THE
GLOBE AND MAIL'S EDUCATION REPORTER.

Caroline is in her forties, with shoulder-length curly black hair. She's wearing a light gray blazer and a cream blouse.

Nam continues WELCOME TO YOU ALL.
MARGUERITE, THIS IS YOUR FIRST
TIME HERE SO THANK YOU SO MUCH
FOR MAKE THE TIME.
AND MIKE AND CAROLINE, THANK YOU
FOR COMING BACK.
I WANT TO SHOW YOU A CLIP OF THE
MINISTER TODD AT THE END OF THE
DAY, MINISTER OF CHILDREN,
COMMUNITY, AND SOCIAL SERVICES
ANNOUNCING CHANGES TO THE
ONTARIO AUTISM PROGRAM ON MONDAY.
PLEASE ROLL.

A clip plays on screen with the caption "July 29, 2019."
In the clip, Minister Todd Smith gives a statement behind a lectern that reads "Protecting what matters most." He is flanked by two men and two women.

He says OUR GOVERNMENT IS COMMITTED
TO BUILDING A NEEDS-BASED AUTISM
PROGRAM.
NOT JUST A NEEDS-BASED
COMPONENT, A NEEDS-BASED
PROGRAM.
THIS CLEAR NEW DIRECTION STEMS
FROM EXPERT ADVICE THAT WE'VE
RECEIVED FROM SERVICE PROVIDERS,
AND THE LIVED EXPERIENCES SHARED
BY FAMILIES WITH AUTISM.
WE TOOK AN INITIAL ATTEMPT AT
PROGRAM REDESIGN.
ON THIS FINAL POINT, IT'S CLEAR
TO ME THAT WE DIDN'T GET THE
REDESIGN RIGHT THE FIRST TIME.
AND I'M HERE TO TELL YOU THAT WE
WILL NOW.

The clip ends.

Nam says BEFORE I GET YOUR
REACTIONS FROM THE ANNOUNCEMENT,
I WANTED TO SPEND A FEW MINUTES
WITH CAROLINE JUST TO GO MORE
INTO THE DETAILS.
I HAVE A THING OF NOTES BECAUSE
THIS IS REALLY COMPLICATED.
SO, CAROLINE, WHAT OTHER DETAILS
DID THE MINISTER ANNOUNCE?

The caption changes to "Caroline Alphonso. The Globe and Mail."
Then, it changes again to "Changing course."

Caroline says SO WHAT
WE HEARD IN THAT CLIP IS THE
MINISTER IS SAYING WHAT THEY HAD
DONE INITIALLY WAS POORLY
CONCEIVED AND HE APOLOGIZED FOR
WHAT HAS HAPPENED.
THE DETAILS ARE STILL A BIT
UNCLEAR AS TO HOW THE PROGRAM
WILL MOVE FORWARD.
BUT WHAT HE'S SAYING IS THAT
THEY'RE GOING TO SCRAP WHAT THEY
PREVIOUSLY HAD, EVENTUALLY, AND
HAVE A NEEDS-BASED PROGRAM,
WHICH IS A PROGRAM BASED ON A
CHILD'S NEEDS FOR THERAPY, WHAT
A CHILD NEEDS...

Nam says WELL, HOW DOES A
NEEDS-BASED PROGRAM DIFFER FROM
WHAT THE GOVERNMENT WAS
PROPOSING BEFORE?

The caption changes to "Caroline Alphonso, @calphonso."

Caroline says IT'S A
LONG SORT OF COMPLICATED FILE
BUT LET'S GO BACK TO FEBRUARY,
SINCE THE PREVIOUS MINISTER,
LISA MACLEOD, WHO HAS BEEN MOVED
OFF THE FILE SINCE THEN.
SHE ANNOUNCED THE PROGRAM WOULD
BE CHANGING.
PARENTS ARE RECEIVING BUDGETS.
IT'S BASED ON FAMILY INCOME AND
THE AGE OF THE CHILD.
THAT'S HOW MUCH FUNDING THE
CHILD WOULD RECEIVE.
SHE JUSTIFIED THESE CHANGES BY
SAYING THAT SHE WOULD BE
ELIMINATING A WAIT LIST.
SHE WAS SAYING THAT THERE'S
23,000 CHILDREN WAITING FOR
THERAPY SERVICES.
SO BY MOVING TO THIS, ALL KIDS
WOULD GET SOME FORM... SOME...
ALL FAMILIES WOULD RECEIVE
FUNDING FOR THERAPY.
NOW, THERE WAS AN OUTCRY.
I MEAN, PARENTS WHO WERE UNDER
THE OLD PROGRAM, WHERE THEY
RECEIVED FUNDING FOR
NEEDS-BASED... FOR NEEDS-BASED
SUPPORT, THEY WERE LOSING TENS
OF THOUSANDS OF DOLLARS AS A
RESULT OF THIS.
SO, YOU KNOW, WHAT WE
RECEIVED... WHAT I WAS HEARING
FROM PARENTS IS THAT THEIR KIDS
PERHAPS, WHO WERE SCHOOL-AGE,
WOULD BE ATTENDING SCHOOL HALF
THE DAY OR FOR PART OF THE DAY,
AND NOW THEY WERE BEING FORCED
TO PUT THEIR KIDS IN FOR THE
FULL DAY BECAUSE THEIR FUNDING
WOULD BE CUT.
THE GOVERNMENT HEARD THIS, AND A
MONTH LATER, THEY CHANGED IT.
SO IT WAS... IT WAS... THE SAME
CHILD BUDGET BUT NOW WAS BASED
ON AGE.
SO IF YOUR CHILD WAS UNDER FIVE,
THEY WOULD RECEIVE 20,000 A
YEAR.
IF YOUR CHILD WAS SIX... FIVE
AND ABOVE, THEY WOULD RECEIVE
5,000 A YEAR.
STILL, THAT WAS NOT ENOUGH.
PARENTS WERE SAYING, THIS IS NOT
ENOUGH.
THIS IS NOT BASED ON NEED.
FOR SOME KIDS IT MAY BE ENOUGH.
FOR MANY KIDS, IT'S NOT ENOUGH.
WHERE THERAPY COSTS UPWARDS OF
80,000 dollars A YEAR.
SO NOW TODD SMITH HAS COME ON
THIS WEEK AND SAID WE ARE GOING
TO CHANGE THE PROGRAM TO MAKE IT
NEEDS-BASED.

Nam says YOU'VE BEEN COVERING
THIS FOR A WHILE.

Caroline says I HAVE.

Nam says WERE YOU SURPRISED BY
THE FACT THAT THERE WAS A
U-TURN?

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

Caroline says NOT ENTIRELY.
SO THE PREVIOUS LIBERAL
GOVERNMENT TRIED TO MAKE SOME
CHANGES TO THE FILE BACK IN
2016.
THEY PUT AN AGE CUTOFF.
THEY SAID IF YOUR CHILD IS FIVE
AND OVER, THEY WOULD RECEIVE NO
FUNDING.
IMMEDIATELY PARENTS CAME TO THE
FOREFRONT AND SAID, THIS IS NOT
FAIR.
MY CHILD HAS BEEN RECEIVING
THERAPY.
YOU'RE CUTTING BACK THEIR
FUNDING.
YOU'RE TAKING AWAY THEIR
FUNDING.
AND THE LIBERALS CHANGED THEIR
MINDS.
I MEAN, THEY TURNED... THEY WENT
BACK TO THEIR PREVIOUS... THEIR
PREVIOUS PROGRAM.
SO I WASN'T ENTIRELY SURPRISED
JUST BECAUSE THE AUTISM
COMMUNITY, THEY KNOW THIS ISSUE.
THEY UNDERSTAND THIS ISSUE.
THEY KNOW WHAT THEIR CHILDREN
NEED.
AND THIS GOVERNMENT NEEDED TO
CHANGE ITS DIRECTION.

Nam says MARGUERITE, I WANTED
TO GET YOUR REACTION.
WHAT WAS YOUR REACTION TO THE
ANNOUNCEMENT THAT THE MINISTER MADE?

The caption changes to "Marguerite Schabas. Ontario Autism Coalition."

Marguerite says WELL,
WE DO FEEL THAT MINISTER SMITH'S
ANNOUNCEMENT PUTS US ON THE
RIGHT TRACK AGAIN.
THAT BEING SAID, THERE IS NO
TIME LINE AND NO DETAILS...
WELL, THERE IS A TIME LINE.
IT'S APRIL 2020.
KIDS HAVE BEEN WAITING YEARS
ALREADY.
ONE THING THAT MINISTER MACLEOD
GOT RIGHT WAS WAIT LISTS ARE NOT
OKAY.
BUT KIDS CONTINUE TO WAIT.
AND THIS NEW PLAN HAS NO DETAILS
AND WE'RE STILL IMPLEMENTING THE
PLAN THAT HE'S SAYING WAS WRONG.
WE NEED TO CHANGE THINGS FAST.

Nam says WELL, THEY SAID THAT
THEY HAVE AN ADVISORY PANEL,
IT'S BEING CALLED THE AUTISM
ADVISORY PANEL, AND THEY'RE
GOING TO BE FLESHING OUT THE
DETAILS WITH AN ANNOUNCEMENT
COMING I THINK AT THE END OF THE
SUMMER, EARLY FALL.
MIKE, THE MINISTER ADMITTED THAT
THE GOVERNMENT DIDN'T GET IT
RIGHT THE FIRST TIME.
WERE YOU SURPRISED BY THAT?

The caption changes to "Mike Lake. Conservative MP, Edmonton-Wetaskiwin."

Mike says I WASN'T.
I'VE HAD A CHANCE TO GET TO KNOW
TODD OVER THE LAST MONTH, SINCE
HE TOOK OVER THE FILE, AND HE
HAS BEEN ABSOLUTELY COMMITTED TO
LISTENING TO PARENTS, TO MAKING
SURE HE'S HEARING FROM
STAKEHOLDERS, TO MEETING WITH
THE ADVISORY PANEL.
AND SO BASED ON ADVICE I WAS
GIVING HIM, BASED ON ADVICE SOME
OF HIS PROVINCIAL COLLEAGUES
WERE GIVING HIM, BASED ON WHAT
HE WOULD HAVE BEEN HEARING, I
THINK THAT WHAT WE HEARD
YESTERDAY REFLECTS THAT ADVICE
AND SHOWS THAT HE'S LISTENING
RIGHT NOW.

Nam says BUT AS MARGUERITE
SAID, WE'RE NOT GOING TO KNOW
THE FULL DETAILS FOR A WHILE
LONGER, AND PARENTS HAVE TO WAIT
ANOTHER 9 MONTHS.
IS THAT A RIGHT MOVE?

The caption changes to "Mike Lake, @MikeLakeMP."

Mike says WELL, I THINK
IT'S REALLY IMPORTANT THAT THE
ADVISORY PANEL IS ABLE TO DO ITS
WORK.
THEY HAVE SOME OF THE TOP
EXPERTS IN ONTARIO WORKING ON
THIS ADVISORY PANEL TO COME UP
WITH A PLAN THAT'S GOING TO BE
SUSTAINABLE OVER THE LONG TERM.
THAT'S SOMETHING THAT HAS BEEN
MISSING FOR A LONG TIME.
AND, YOU KNOW, YESTERDAY YOU
HEARD THE MINISTER BASICALLY
SAY, HEY, WE GOT IT WRONG TO
START, AND CAROLINE... YEAH,
MONDAY, SORRY.
AND CAROLINE MADE THE POINT THAT
THE PREVIOUS LIBERAL GOVERNMENT
GOT IT WRONG TO START TOO.
THERE'S A HISTORY, WHEN YOU LOOK
AT GOVERNMENTS ACROSS NORTH
AMERICA, OF GOVERNMENTS GETTING
IT WRONG AT THE START ON AUTISM
AND TAKING A WHILE TO GET IT
RIGHT.
I THINK LISTENING TO THE ADVICE
OF THIS EXPERT ADVISORY PANEL IS
REALLY, REALLY IMPORTANT, AND
THEN FOLLOWING THROUGH ON THE
ADVICE THAT THEY GIVE TO CREATE
A PROGRAM THAT WILL BE
SUSTAINABLE OVER THE LONG TERM.
AND ONE THING THAT THE
GOVERNMENT HAS DONE RIGHT IS
THEY'VE SAID WE'RE GOING TO PUT
MORE MONEY TOWARDS THIS,
600 MILLION DOLLARS, WHICH IS AN
UNPRECEDENTED AMOUNT OF MONEY.
THEY WANT TO MAKE SURE THEY GET
THE BEST ADVICE THEY CAN FROM
THIS PANEL...

Nam says THERE ARE SOME
DISCREPANCIES ABOUT THE AMOUNT.
I THINK INITIALLY IT WAS 620,
NOW IT'S 600.
YOU WANTED TO...

Caroline says I'D BE
INTERESTED TO SEE WHAT THE
GOVERNMENT DOES AT THE END OF
THE DAY, BECAUSE THE ADVISORY
PANEL IS SUPPOSED TO COME BACK
WITH THEIR RECOMMENDATIONS TO
THE MINISTER AT THE END OF THE
SUMMER.
THE GOVERNMENT HAS SAID THAT
THEY'RE NOT GOING TO INCREASE...
OR MINISTER SMITH STRONGLY
INDICATED THEY'RE NOT GOING TO
INCREASE THE BUDGET FROM
600 MILLION, WHICH, TO BE FAIR,
THEY HAVE DOUBLED SINCE THE
LIBERALS WERE THERE.
SO I HAD 'BE INTERESTED TO SEE
HOW THEY CAN SERVICE AS MANY
KIDS AS THEY WANT TO WITHIN THE
600 MILLION AND WHAT WILL BE
COVERED IN THAT... IN THOSE
NEEDS-BASED SUPPORTS.
SO THERE'S STILL A LOT OF
UNANSWERED QUESTIONS AS TO WHAT
THIS NEEDS-BASED PROGRAM WILL
LOOK LIKE, WHETHER THERE WILL BE
LIMITS ON THE NUMBER OF HOURS
KIDS CAN GET THERAPY PER WEEK,
FOR EXAMPLE.

Nam says WITH ALL THESE QUESTIONS, WHY THE ANNOUNCEMENT NOW?

Caroline says WHY THE ANNOUNCEMENT NOW?
THAT'S A GOOD QUESTION.
I THINK THE GOVERNMENT NEEDED TO
CHANGE DIRECTION.
IT WAS... IT WAS NOT WORKING.
KIDS WERE GOING TO BE RETURNING
BACK TO SCHOOL IN THE FALL OR BY
OCTOBER BECAUSE THEIR
THERAPIES... THEIR FUNDING WOULD
HAVE BEEN CUT OFF.
SCHOOL BOARDS DID NOT KNOW HOW
THEY WERE GOING TO SUPPORT THESE
CHILDREN BECAUSE THERE WERE NOT
REALLY EXTRA PEOPLE IN THE
SCHOOL, EAS IN THE SCHOOL,
THERE WERE NOT ENOUGH RESOURCES
IN THE SCHOOL.
I THINK SOMETHING... AND THIS
ADVISORY PANEL WAS TO COME UP...
WAS TO PROVIDE ITS
RECOMMENDATIONS AT THE END OF
THE MONTH... AT THE END OF
AUGUST, SO THERE HAD TO BE SOME
CHANGE HAPPENING SOON.

Nam says MIKE, YOU'RE A FEDERAL
MP FROM EDMONTON.
WHY DID YOU DECIDE TO GET
INVOLVED IN AN ONTARIO
PROVINCIAL ISSUE?

Mike says I THINK... I'VE
BEEN A MEMBER OF PARLIAMENT FOR
13 YEARS AND DONE A LOT OF WORK
ON AUTISM.
IT'S A BIG PART OF WHY I
CONTINUE TO DO WHAT I DO.
WE'RE WORKING AT A GLOBAL LEVEL.
WE'RE WORKING AT A NATIONAL
LEVEL.
AND I JUST WANT TO HELP WHERE I
CAN.
IN THIS CIRCUMSTANCE, IT WAS
CLEAR TO ME, TAKING A LOOK IN
FEBRUARY WHEN THE FIRST
ANNOUNCEMENT CAME OUT, THAT
THERE WERE... THEY WERE ON THE
WRONG PATH.
I MEAN, THAT WAS FAIRLY CLEAR TO
MOST PEOPLE THAT WERE WATCHING.
AND SO...

Nam says YOU PROVIDED FEEDBACK
TO THEM?

Mike says I PROVIDED...
JUST LIKE I DID WITH THE LIBERAL
GOVERNMENT BEFORE, IN BOTH CASES
REACHED OUT AND SAID, I CAN HELP
YOU, I CAN HELP INTRODUCE YOU TO
SOME OF THE EXPERT STAKEHOLDERS,
SOME OF THE TOP EXPERTS IN THE
WORLD ARE RIGHT HERE IN ONTARIO
THAT CAN ADVISE ON GOVERNMENT
POLICY.
BACK IN THE LIBERAL DAYS I MET
WITH WYNNE'S TEAM, I MET WITH
MINISTER MCCHARLES AND THEN
MET WITH MINISTER COTEAU, AND
WORKED TO SORT OF ANSWER
QUESTIONS THEY HAD, AND IN THIS
CASE, REACHED OUT TO TRY AND
HELP IN ANY WAY I CAN.

Nam says MIKE COTEAU WAS
RESPONSIBLE FOR THE FILE WITH
THE LIBERALS, RIGHT?

Mike says YES, HE WAS.
AND WE HAD A GREAT RELATIONSHIP.
AND IN THIS CASE REACHED OUT TO
ANY MPPS THAT I COULD.
HAD A CHANCE TO HAVE A
CONVERSATION WITH DOUG FORD IN
LATE MARCH THAT I THOUGHT WAS AN
IMPORTANT CONVERSATION.
AND I'LL TELL YOU A LITTLE BIT
ABOUT THE ADVICE THAT I GAVE AT
THE TIME.
I SAID, FIRST OF ALL, IN THE
LONG TERM, YOU'VE GOT TO START
THINKING ABOUT AUTISM AS A LIFE
SPAN.
IT'S NOT ALL ABOUT EARLY
INTERVENTION, ALTHOUGH RIGHT
NOW, CLEARLY THERE'S AN URGENT
NEED TO ADDRESS THAT.
YOU'VE GOT TO THINK ABOUT
DIAGNOSIS.
YOU'VE GOT TO THINK ABOUT
EDUCATION.
YOU'VE GOT TO THINK ABOUT
EMPLOYMENT AND HOUSING.
AND THEN THAT TIME IN OUR LIVES
WHEN THE PARENTS ARE GONE, AND
WE ARE ALL TERRIFIED ABOUT
WHAT'S GOING TO HAPPEN TO OUR
KIDS.
YOU HAVE TO THINK ABOUT LIFE
SPAN WITH A PERSON WITH AUTISM.
YOU HAVE TO THINK ABOUT BRINGING
TOGETHER DIFFERENT MINISTRIES
BECAUSE AUTISM DOESN'T RESIDE IN
EDUCATION OR HEALTH AND THE
RELATIONSHIP TO THOSE MINISTRIES
ARE INTERCONNECTED.
YOU HAVE TO BRING MINISTERS
TOGETHER.
I'VE BEEN ENCOURAGED WHEN I'VE
SEEN A COUPLE OF PRESS
CONFERENCES NOW WHEN YOU'VE HAD
THE MINISTER OF HEALTH AND THE
MINISTER OF EDUCATION SHOW UP
AND BE PART OF THAT
CONVERSATION.
I'D LIKE TO SEE TIGHTER
INTEGRATION AS THEY MOVE
FORWARD.
AND THE THIRD PIECE OF ADVICE I
GAVE TO THE PREMIER IS, YOU HAVE
THESE EXPERTS.
USE THEM.
YOU HAVE AUTISM ONTARIO.
YOU HAVE HOLLAND BLOORVIEW AND
JESSICA BRIAN THERE.
YOU HAVE JULIE KUTIS.
I START NAMING NAMES.
YOU HAVE...

The caption changes to "Watch us anytime: tvo.org, Twitter: @theagenda, Facebook Live, YouTube."

Nam says YOU WANTED HIM TO
SPEAK TO THE PEOPLE DOING THE WORK.

Mike says WENDY ROGERS WHO IS LEGENDARY
IN THE AUTISM COMMUNITY.
YOU HAVE ALL OF THESE EXPERTS
AND YOU NEED TO USE THEM TO GIVE
YOU SOME FANTASTIC ADVICE AND I
BELIEVE IF YOU DO THIS, YOU'RE
GOING TO WIND UP WITH A
WORLD-LEADING AUTISM PROGRAM AND
THAT'S WHERE I HOPE WE WIND UP.

Caroline says ONE OF THE QUESTIONS YOU
ASKED IS WHY NOW.
MIKE SAID HE SPOKE TO THE
PREMIER ABOUT IT.
EVEN WITHIN GOVERNMENT, THERE
WAS CRITICISM ABOUT HOW IT
HANDLED THE FILE.
MY COLLEAGUE LAURA STONE AND I
REPORTED ON AN INTERNAL REVIEW
BY ONE OF THE PREMIER'S MPPS
ROMAN BABOUR WHO SAID HE
PRESENTED THIS REPORT TO THE
PREMIER AND THE PREMIER'S FORMER
CHIEF OF STAFF, SAYING THAT THE
GOVERNMENT MISHANDLED THIS FILE
WITH ITS ANNOUNCEMENT IN
FEBRUARY AND THE CHANGES THAT IT
MADE IN FEBRUARY.
IT WAS CRITICAL OF THE TONE THAT
THE GOVERNMENT TOOK ON THIS
FILE.
IT QUESTIONED THE WAIT LIST
NUMBER.
THERE WERE... YOU KNOW, IT SAID
THAT WE NEED... THE KEY MESSAGE
FROM THIS REPORT IS THAT THERE
NEEDS TO BE A RESET.
WE NEED TO RE-THINK HOW WE MOVE
FORWARD ON THIS FILE.
SO EVEN INSIDE, PEOPLE WERE NOT
HAPPY WITH HOW THE GOVERNMENT
HANDLED THIS FILE.

Nam says WELL, SOMETHING THAT
COMES TO MY MIND IS THAT HE...
YOU KNOW, I'M ASSUMING HE ASKED
THEM TO WRITE THAT REPORT...

Caroline says THAT'S RIGHT.

Nam says EVEN THOUGH IT
ENDED UP BEING LATE.
IT SEEMS TO BE SOMETHING THAT'S
FRONT OF MIND FOR THE PREMIER.
BUT OTHER PEOPLE MIGHT LOOK AT
IT AND SAY, WELL, THE
ANNOUNCEMENT, THE TIMING, WE
HAVE A FEDERAL ELECTION COMING
UP IN OCTOBER.
SO HOW DO YOU... HOW DO YOU, I
GUESS, CREATE A FOUNDATION OF
TRUST MOVING FORWARD TO WORK IN
THE INTERESTS OF CHILDREN WITH
AUTISM IN THIS PROVINCE?

Marguerite says IT'S GOING TO TAKE A WHILE TO REBUILD THAT TRUST.
PARENTS RIGHT NOW ARE FEELING
HELPLESS AND HOPEFUL MAYBE A
LITTLE BIT AFTER MONDAY'S
ANNOUNCEMENT, BUT WE NEED TO SEE
DETAILS.
WE NEED TO SEE RESULTS.
WE NEED TO SEE DEADLINES MOVED
CLOSER.
BECAUSE THE REALITY IS, I MEAN,
YOU KNOW, MIKE, A CHILD WITH
SIGNIFICANT NEEDS, EVERYDAY LIFE
IS VERY, VERY HARD FOR THESE
FAMILIES, AND SO, YOU KNOW, WE
ALL SIT HERE AND WE'RE GOING
FROM A LIBERAL PLAN TO A
CONSERVATIVE AUTISM PLAN.
IT SHOULD BE AN AUTISM PLAN, ONE
THAT WORKS, THAT WORKS FOR OUR
KIDS, THAT GIVES THEM THE TOOLS
TO BE ABLE TO COPE AND SURVIVE
IN OUR SOCIETY.
WE NEED TO MAKE SOCIETY BETTER.
IT'S TAKING TOO LONG.

Nam says AND, MIKE, YOU ARE A
FEDERAL MP.
DO YOU THINK THAT THERE'S A ROLE
FOR THE FEDERAL GOVERNMENT TO PLAY?

Mike says ABSOLUTELY.
BACK IN 2015, WE PUT IN PLACE A
WORKING GROUP WHEN WE WERE IN
GOVERNMENT WE PUT IN PLACE A
WORKING GROUP TO ESTABLISH A
CANADIAN AUTISM PARTNERSHIP.
AND IN THE ASK, THE ORIGINAL ASK
OF THE CANADIAN AUTISM
PARTNERSHIP, THEY PUT FORWARD
THE IDEA THAT THEY WOULD CREATE
A NATIONAL AUTISM STRATEGY AND
THEN WORK WITH GOVERNMENTS TO
IMPLEMENT THAT.
IT WAS SUBSEQUENTLY PUT FORWARD
FOR AN ACTUAL BUDGET ASK IN 2017
AND WAS REJECTED BY THE
GOVERNMENT OF THE DAY.
BUT I THINK WHAT YOU'RE GOING TO
SEE IN THIS NEXT CAMPAIGN, WELL,
THE NDP ALREADY HAVE A NATIONAL
STRATEGY IN THEIR PLATFORM.
WE WILL ABSOLUTELY HAVE ONE IN
OUR PLATFORM.
I'M NOT SURE, BUT I WOULD ASSUME
THE LIBERALS WILL HAVE ONE IN
THEIR PLATFORM.
IT WILL BE A TOP OF MIND
DISCUSSION AS WE MOVE INTO THE
FEDERAL ELECTION.
WHAT I WOULD REALLY LIKE TO SEE
IS US TAKE ADVANTAGE OF THE
EXPERTS ACROSS THE COUNTRY TO
ADVISE GOVERNMENTS IN THEIR
JURISDICTION, SO HEALTH
MINISTERS MEETINGS, SOCIAL
SERVICES MINISTERS MEETING,
PUTTING AUTISM ON THE AGENDA,
SHARING WHAT THEY'RE DOING IN
THEIR OWN PROVINCES AND MAYBE
ESTABLISHING SOMETHING A LITTLE
BIT MORE SOPHISTICATED IN TERMS
OF OUR SHARING OF INFORMATION.
TAKING THE BEST EVIDENCE FROM
AROUND THE WORLD IN ALL OF THESE
DIFFERENT AREAS AND HARD-WIRING
IT INTO GOVERNMENT POLICY-MAKING
PROTOCOLS.

Nam says WE DID INVITE MINISTER
TODD SMITH TO COME ONTO THE
SHOW, AS WELL AS HIS TWO
PARLIAMENTARY ASSISTANTS.
THEY WERE UNAVAILABLE.
HIS OFFICE DID SEND US THE
FOLLOWING STATEMENT, WHICH READS: "OUR GOVERNMENT IS MAKING THE LARGEST INVESTMENT IN THE HISTORY OF THE ONTARIO AUTISM PROGRAM, AND WE'RE COMMITTED TO
SUPPORTING AS MANY CHILDREN AND YOUTH AS POSSIBLE WHILE ENSURING NO GAPS IN SERVICE.
WE HAVE LISTENED AND WE HAVE LEARNED.
BY WORKING TOGETHER, WE CAN BUILD AN ONTARIO AUTISM PROGRAM THAT GIVES OUR KIDS NOT JUST WHAT THEY NEED BUT WHAT THEY AND
THEIR PARENTS DESERVE."
MARGUERITE, DO YOU BELIEVE THE
MINISTER WHEN HE SAYS THEY HAVE
LISTENED AND THEY HAVE LEARNED?

The caption changes to "Marguerite Schabas, @OntAutism."
Then, it changes again to "Getting it right."

Marguerite says I DO.
I DO.
I THINK THEY... YOU KNOW, THEY
DID DO SOME CONSULTATIONS AND
THEY HAVE ENGAGED A COMMITTEE, A
WORKING COMMITTEE, OF EXPERTS,
GOOD PEOPLE WHO I KNOW WANT TO
DO THE RIGHT THING.
IT'S... I HOPE THEY DO.
I HOPE THEY'RE GIVEN THAT POWER
TO SET THIS RIGHT FOR KIDS
BECAUSE A PROGRAM LIKE THIS IS
CRUCIAL TO DEVELOP BASIC NEEDS
FOR OUR KIDS AND SOCIAL SKILLS,
COMMUNICATION, BASIC... JUST
LIFE SKILLS, SO THAT THEY NEED
LESS RESOURCES IN THE EDUCATION
SYSTEM.
RIGHT NOW THE EDUCATION SYSTEM
ISN'T SET UP TO TAKE CARE OF OUR
KIDS.
WE HEAR HORRIBLE STORIES OF KIDS
WHO ARE LOCKED IN ROOMS OR THE
POLICE CALLED ON A 5-YEAR-OLD IN
SCHOOL.
IT'S UNACCEPTABLE.
AND A REAL PROGRAM THAT GIVES
KIDS THE THERAPY THAT WILL GIVE
THEM SURVIVAL SKILLS IN OUR
WORLD IS CRUCIAL FOR THEM
THRIVING IN OUR WORLD.

Nam says ON A PERSONAL NOTE,
WHAT SPURRED YOU TO JOIN THE
ONTARIO AUTISM COALITION?

Marguerite says WE HAVE
A BEAUTIFUL LITTLE BOY WHO IS
SEVEN TODAY, PETER.

Nam says HAPPY BIRTHDAY, PETER.

Caroline says HE HAS THREE BROTHERS.
SO WE HAVE A VERY BUSY HOUSE.
BUT PETER HAS AUTISM.
AND WE WERE CAUGHT IN THAT
LIBERAL MESS THREE YEARS AGO
WHERE WE WENT FROM... HE WAS
FOUR YEARS OLD AND THEY SET AN
AGE FIVE CUTOFF.
SO AS PARENTS, YOU'RE GOING TO
DO ANYTHING AND EVERYTHING FOR
YOUR CHILD.
SO WE STARTED FIGHTING.
WE STARTED JUST GOING TO
PROTESTS AND GETTING INVOLVED
AND DOING WHAT WE COULD, AND
IT'S REALLY SAD THAT THE
FAMILIES THAT GATHERED THREE
YEARS AGO TO MAKE THOSE CHANGES,
AND COTEAU'S NEW PLAN THAT HE
DID... I MEAN, IT STARTED IN THE
YEAR BEFORE THE ELECTION, SO IN
ALL FAIRNESS, I THINK IT JUST...
THEY WEREN'T ABLE TO MAKE IT
SUSTAINABLE BECAUSE THEY WERE
TRYING TO GET ELECTED AGAIN.
BUT I THINK THAT PLAN HAD A LOT
OF POTENTIAL, IT JUST NEEDED
MORE PARAMETERS AND... IT NEEDED
QUITE... SOME TWEAKS.
IT WASN'T DONE.
I WOULD HOPE THAT THE
CONSERVATIVE GOVERNMENT NOW
WOULD ACTUALLY LOOK BACK... I
KNOW IT'S ALL ABOUT LIBERAL
PLANS AND CONSERVATIVE PLANS,
BUT I WOULD HOPE...

The caption changes to "Subscribe to The Agenda Podcast: tvo.org/theagenda."

Nam says THAT MUST BE FRUSTRATING.

Marguerite says IT'S HORRIBLE.
BECAUSE IT'S NOT FAIR TO OUR KIDS.

Mike says WE NEED TO GET
BEYOND THAT, FOR SURE.

Marguerite says WE NEED TO.
THESE AREN'T POLITICAL GAMES.
THESE ARE CHILDREN'S LIVES.
IT'S THEIR FUTURE.
THESE ARE ADULT LIVES BECAUSE
THESE KIDS WILL BE ADULTS IN OUR
SOCIETY.
THE ONES NOW THAT HAVE BEEN, YOU
KNOW, HAVE LOST YEARS OF
REACHING THEIR POTENTIAL, THESE
KIDS WILL BE ADULTS REQUIRING
SIGNIFICANT SUPPORT AND A LOT OF
OUR FAMILIES AREN'T FINANCIALLY
EQUIPPED, AREN'T, YOU KNOW, OUR
PARENTS WILL DIE.
I MEAN, WHO IS GOING TO TAKE
CARE OF THESE ADULTS?

Nam says YOU MENTIONED THAT
YOUR SON RECEIVED THERAPY.
HOW HAS HE BENEFITED FROM THERAPY?

Marguerite says HE'S THRIVING.
HE IS... HE'S BEEN DOING ABA AND
WE'VE BEEN... YOU KNOW, TRYING
TO FIND RESOURCES FROM FAMILY
AND WHATEVER TO DO SPEECH AND
OCCUPATIONAL THERAPY AS WELL.

Nam says WHAT IS ABA, SORRY?

Marguerite says APPLIED BEHAVIOURAL ANALYSIS.
THIS IS WHAT THE AUTISM PROGRAM
HAS SUPPORTED UP UNTIL NOW.
AND NOW WE'RE HAPPY TO SEE NEW
THERAPIES BECAUSE OUR KIDS
BENEFIT FROM MANY DIFFERENT
KINDS OF THERAPIES.
BUT, YEAH, HE IS SO MUCH MORE
SOCIAL NOW.
HE'S STILL FAIRLY NON-VERBAL.
BUT THE THERAPY HAS GIVEN HIM A
TOOL.
HE COMMUNICATES WITH AN IPAD.
WE WORK ON A PROGRAM, SAFETY
PROGRAM, YOU KNOW, JUST GOING TO
A PARK WITH HIM IS A CHALLENGE
BECAUSE HE'S A RUNNER.
HE DOESN'T UNDERSTAND DANGER.
SO WE WORK ON SAFETY WITH HIM.
ALL OF THESE THERAPISTS KNOW HOW
TO DO THIS.
AS A PARENT, I HAVE GOOD
INSTINCTS, BUT WITH HIM, I FALL
SHORT.
I DON'T KNOW HOW TO WORK ON SOME
THINGS.
AND HE'S COME A LONG WAY.
HE'S AT SCHOOL NOW.
HE'S GOT A WONDERFUL EA.
AND THE THERAPISTS ARE ALLOWED
IN THE SCHOOL AND HE'S THRIVING.
HE'S LEARNING HOW TO WRITE.

Nam says I HOPE YOU ENJOY LOTS
OF ICE CREAM AND CAKE TONIGHT.

Marguerite says WE DO.

Nam says MIKE, COULD GO BACK TO
THE MINISTER'S ANNOUNCEMENT.
WHAT WOULD IT MEAN FOR THE
GOVERNMENT TO GET IT RIGHT?

Mike says WELL, YOU LISTEN
TO MARGUERITE'S STORY ABOUT PETER.
I MEAN, THAT'S WHAT IT MEANS TO
GET IT RIGHT, IS TO PUT PEOPLE
ON THAT PATH.
YOU KNOW, WE START TAKING A LOOK
AT... WE'RE SO FOCUSED ON THE
CHALLENGES IN OUR SOCIETY, BUT
THESE INDIVIDUALS WITH AUTISM
HAVE ENORMOUS POTENTIAL IF WE
CAN UNLOCK THAT POTENTIAL, AND
GETTING THEM THE HELP THAT THEY
NEED EARLY IN THEIR LIVES, NOT
MISSING THOSE WINDOWS,
EVIDENCE-BASED INTERVENTION WILL
MEAN... WILL MAKE A HUGE
DIFFERENCE IN THE REST OF THEIR
LIFE AND THEIR ABILITY TO
CONTRIBUTE AND TAKE ADVANTAGE OF
THEIR SKILLS AND ABILITIES, AND
NOT JUST THEM TAKE ADVANTAGE OF
THEIR SKILLS AND ABILITIES, BUT
US AS A SOCIETY TAKE ADVANTAGES
OF THOSE SKILLS AND ABILITIES.

Nam says CAROLINE, WHEN IS THE
GOVERNMENT EXPECTED TO SHARE THE
NEW DETAILS?

The caption changes to "A final strategy."

Caroline says THE
AUTISM ADVISORY PANEL IS
EXPECTED TO HAVE RECOMMENDATIONS
BY THE END OF AUGUST.
AND THEN BY NEXT APRIL, THE
INTENTION IS TO HAVE THE PROGRAM
FULLY ROLLED OUT.
SO DETAILS COULD COME EARLIER.
BUT BY THE END OF APRIL, THE
GOVERNMENT HAS PROMISED THAT
THERE WILL BE A NEW PROGRAM IN
PLACE.
IN THE MEANTIME, FAMILIES ARE
STILL RECEIVING CHILDHOOD BUDGET
CHEQUES UNDER THE OLD PROGRAM.
THEY HAVE PROVIDED AN EXTENSION
OF SIX MONTHS FOR THOSE UNDER
THE OLD LIBERAL PROGRAM.
SO THERE'S... RIGHT NOW, THERE'S
TWO PROGRAMS IN PLACE.
IT'S DISJOINTED.
YOU KNOW, SOME FAMILIES ARE
RECEIVING THE FULL AMOUNT THEY
NEED FOR THEIR KIDS' THERAPY,
AND SOME ARE RECEIVING 5,000 dollars FOR
THEIR SCHOOL-AGE CHILDREN.
SO I'M SORT OF WONDERING HOW
THIS IS GOING TO PLAY OUT IN THE
SCHOOL SYSTEM GOING FORWARD, AS
THE EDUCATION REPORTER.
ARE WE GOING TO SEE MORE
RESOURCES PUT INTO THE SCHOOLS
TO HELP CHILDREN?
BUT WHAT IS THE NEEDS-BASED
PROGRAM GOING TO LOOK LIKE FULLY.

Nam says THAT'S ASSUMING IT
COMES OUT IN SUMMER BUT THEN
SCHOOL IS RIGHT AROUND THE CORNER.

Caroline says SCHOOL IS JUST AROUND THE
CORNER.
THAT 6-MONTH EXTENSION IS GOING
TO END BEFORE THE NEW PROGRAM IS
FULLY ROLLED OUT.
SO THERE WILL BE... UNLESS THEY
START ROLLING IT OUT EARLIER,
THERE WILL BE A TIME LAG IN
BETWEEN.

Nam says MARGUERITE, WHAT WILL
YOU BE LOOKING FOR WHEN THE
FINAL STRATEGY IS REVEALED?

Marguerite says I'M...
WELL, NEEDS-BASED, BUT ONE THAT
MAKES SENSE, THAT ACTUALLY, YOU
KNOW, TAKES INTO ACCOUNT WHERE A
CHILD IS AT, WHAT KIND OF
THERAPY THEY NEED.
SO WE DO WANT TO SEE DIFFERENT
KINDS OF THERAPIES STILL IN THIS
PROGRAM.
YOU KNOW, YOU MENTIONED THAT
WE'VE HAD DIFFERENT MINISTERS
STAND BEHIND AUTISM
ANNOUNCEMENTS TWICE NOW.
WE WANT TO SEE RESULTS THERE.
IT'S GREAT FOR THEM TO STAND AND
SMILE, BUT SO FAR, ALL WE'VE
SEEN ARE CUTS IN SCHOOLS, CUTS
FOR SUPPORT STAFF, FOR TEACHERS,
MAKING CLASSROOMS BIGGER.
THAT DOESN'T HELP OUR KIDS.
IT DOESN'T HELP ANY CHILD.
BUT A CHILD WHO HAS SENSORY
NEEDS AND JUST, YOU KNOW, NEEDS
THAT EXTRA ATTENTION, IT'S A
DISASTER FOR OUR KIDS.

Nam says AND TIME IS CRUCIAL, RIGHT?

Marguerite says AND TIME IS CRUCIAL.
YOU KNOW, WHAT HAS HAPPENED IN
THE LAST SIX MONTHS IS GOING TO
HAVE A DEVASTATING EFFECT FOR
YEARS FOR OUR KIDS, FOR THE
PROFESSIONAL COMMUNITY.
I MEAN, LAYOFFS.
WE'VE SEEN IT IN THE NEWS OVER
THE LAST FEW MONTHS, HOW MANY
LAYOFFS HAVE HAPPENED, HUNDREDS
IN THE AUTISM COMMUNITY.
THAT'S GOING TO TAKE YEARS TO
REBUILD.
SO AS MUCH AS YOU WANT TO GIVE
THERAPY TO ALL THE KIDS ACROSS
ONTARIO, OUR PROVINCE ISN'T
EQUIPPED.
THERE'S NOT ENOUGH
INFRASTRUCTURE.
THERE'S NOT ENOUGH CAPACITY.
THERE'S NOT ENOUGH THERAPISTS.
SO IN REMOTE TOWNS WHERE WE'VE
CUT OFF REGIONAL CENTRES THAT
USED TO SERVE THE NORTHERN
COMMUNITIES AND OTHER PLACES,
YOU CAN SEND AS MUCH MONEY AS
YOU WANT TO THOSE KIDS, BUT
THERE'S NOWHERE FOR THEM TO GET
THE SUPPORT.
SO WE NEED TO DO A LOT BETTER.

Nam says WE HAVE ABOUT A MINUTE
AND A HALF LEFT.
MIKE, THE LAST QUESTION TO YOU.
WHAT ARE YOU HOPING THAT THE
STRATEGY WILL INCLUDE?

Mike says WELL, FIRST OFF,
I WOULD SAY TO MARGUERITE'S
POINT, I THINK THE SORT OF YEARS
OF COST APPLIES IF THEY DON'T
GET IT RIGHT.
BUT I DO BELIEVE THAT RIGHT NOW
THEY'RE ON A TRACK WHERE THEY'RE
GOING TO... WHERE THEY'RE GOING
TO GET IT RIGHT.
I TAKE A LOOK AT THE CABINET
SHUFFLE THAT WAS MADE RECENTLY
AND I SEE STEPHEN LECCE STANDING
THERE AS MINISTER FOR EDUCATION.
STEPHEN IS... EVERYBODY
ACKNOWLEDGES ONE OF THE
UP-AND-COMERS IN THE PROVINCIAL
GOVERNMENT.
I KNOW STEPHEN WELL FROM MY
PREVIOUS DAYS.
I THINK WHAT I WANT TO SEE IN
THE SHORT TERM IS THIS
NEEDS-BASED PROGRAM THAT'S GOING
TO BE SUSTAINABLE AND GET AS
MANY KIDS INTO THE PROGRAM AS WE
CAN.
I THINK EVEN IN THE LONGER TERM,
I WANT TO SEE IT EVOLVE INTO AN
APPROACH OF AUTISM ACROSS THE
LIFE SPAN, THAT AGAIN INTEGRATES
THE VARIOUS DEPARTMENTS
MEANINGFULLY AND TAKES ADVANTAGE
OF THE BEST EVIDENCE IN THE
WORLD TO SERVE PEOPLE LIVING IN
ONTARIO WITH AUTISM...

Nam says DOES IT CONCERN YOU
THAT THE PARENTS HAVE TO WAIT
FOR ANOTHER 9 MONTHS TO...

Mike says I MEAN, THE
PROGRAM RIGHT NOW BRIDGES THE
GAP AND I THINK THAT WHAT YOU'LL
SEE IS A RECOMMENDATION FROM THE
PANEL ON HOW TO TRANSITION.
THAT WILL BE PART OF THE
CONVERSATION THAT THEY'RE
HAVING.
SO IT DOESN'T CONCERN ME BECAUSE
THAT PANEL IS FILLED WITH
EXPERTS, AND THESE ARE SOME OF
THE TOP MINDS IN AUTISM IN
ONTARIO, AND SO I TRUST THAT
THEY'RE... I KNOW THAT THEY'RE
WORKING HARD.
THEY'VE BEEN ASKED TO DO A LOT
OF WORK IN A SHORT PERIOD OF
TIME.
I KNOW THEY'RE UP TO THE TASK
AND THEY TAKE IT VERY SERIOUSLY
AND I THINK THAT FAMILIES OF
PEOPLE LIVING WITH AUTISM AND
PEOPLE LIVING WITH AUTISM IN
ONTARIO ARE GOING TO BE HAPPY
WITH WHAT THEY SEE.

The caption changes to "Producer: Katie O'Connor, @KA_OConnor."

Nam says MIKE, MARGUERITE, AND
CAROLINE, THANK YOU SO MUCH FOR
BEING HERE AND HELPING US TO
UNDERSTAND WHAT IS A VERY
COMPLEX ISSUE THAT'S AFFECTING A
LOT OF PEOPLE IN ONTARIO.
APPRECIATE YOUR TIME.

All the guests say THANK YOU.

Watch: The Agenda in the Summer: A New Day for the Autism File