Transcript: Special Needs Kids | Jan 17, 2001

The title “More to family” appears inside the shape of a house.

The opening sequence shows a wooden table with a small lit candle as several words fly by: Relationships, education, caregivers, home and family.
Fast clips show different sets of hands performing activities on the table such as drawing a big red heart, tuning a violin, flipping through the pages of a book, cooking, and pouring a glass of red wine.
In animation, the title appears inside the shape of a house: “More to life.”

Karen Horsman sits in a studio with yellow walls and a carved board that reads “More to life” in the background.

Karen is in her late thirties, with short wavy brown hair. She wears a burgundy blouse, an olive green suit and a delicate necklace.

She says HELLO, I'M KAREN
HORSMAN SITTING IN FOR
MAUREEN TAYLOR.
WELCOME TO “MORE TO LIFE.”
MOST PARENTS MAKE SACRIFICES
WHEN IT COMES TO CARING FOR
THEIR CHILDREN.
IT CAN BE HARD BUT WE DO IT.
NOW ADD SEVERE DISABILITIES
TO THE LIST OF DAILY THINGS
YOU HAVE TO DO ON A REGULAR
BASIS.
NOW AN EXTRA BURDEN.
WHAT IF THE CARE THAT YOUR
CHILD NEEDS IN TERMS OF
GETTING IT FOR HE OR SHE
THAT YOU HAVE TO GIVE UP
CUSTODY TO ENSURE THAT THEY
GET THAT CARE?
JUST IMAGINE WHAT THAT WOULD
BE LIKE THAT IS A REALITY
FOR MANY PARENTS, SOME HERE
IN THE PROVINCE OF ANNE.
ANNE LARCADE IS ONE SUCH
MOTHER AND HELD A NEWS
CONFERENCE LAST WEEK TO TALK
ABOUT IT.
WE HAVE SOME HIGHLIGHTS NOW
AND THE PERSON WHO SPONSORED
IT IS MICHAEL KREVELL, THE
LIBERAL MINISTER FOR
COMMUNITIES SOCIAL SERVICES.

A clip rolls. Michael and Anne sit on a desk at a conference room.

A caption reads “Michael Gravelle. Liberal MPP.”

Michael is in his mid-forties, clean-shaven and with short wavy light brown hair. He wears a black suit, green shirt and green tie.

Anne Larcade is in her late thirties, with short wavy red hair. She wears a black suit and a striped shirt.

He says WITNESS TO TWO STORIES
WHO LOVE THEIR CHILDREN VERY
MUCH, AND CHALLENGE BY THE
STATE HAVE BEEN FORCED TO
WAGE A PUBLIC BATTLE TO
RETAIN CUSTODY OF THEIR
CHILDREN WHILE ENSURING THEM
THE CARE AND SUPPORT THEY
NEED OF THEIR CHILDREN TO
ENSURE THEY LEAD ACTIVE
LIVES.
THE FACT THAT THEIR
EXPERIENCES HAVE EXPOSED A
MUCH LARGER PROBLEM ALL
ACROSS THE PROVINCE: A
PROBLEM OF A CRITICAL
SHORTAGE OF RESOURCES TO
PROVIDE CARE AND SUPPORT FOR
THEIR CHILDREN.

An image of a pre-teen boy with short wavy brown hair appears.

Anne says AT ELEVEN, ALEXNOW
FUNCTIONS AT THE LEVEL OF A
FOUR-YEAR-OLD, WITH THE
EXCEPTION OF HIS MANNERS
WHICH ARE HIGHLY DEVELOPED.
HE IS NOW DIAGNOSED WITH
A.D.H.D., POST-TRAUMATIC
STRESS, MULTIPLE HANDICAPS
AND POSSIBLE CHILDREN'S
BI-POLE LETTER.
I ASK THAT WE ALL PARTNER
TOGETHER TO DEFINE THE
NUMBER OF CHILDREN IN NEED.
WE'RE A WEAK GROUP OF
PARENTS, AS YOU MIGHT
UNDERSTAND.
TODAY FOR THE FIRST TIME
WE'RE SEEING PEOPLE COME
TOGETHER.
HOW CAN THE GOVERNMENT SERVE
US WHEN THEY DON'T KNOW THE
NUMBERS OF CHILDREN THEY'RE
SERVICING?
THEY ARE DETERMINING THE
NUMBERS AND FUNDING BASED ON
THE WAITING LISTS.
THAT'S WRONG.
RES SPIT DOLLARS ARE TOO
FEW AND WORKERS ARE PAID TOO
LITTLE.
I DON'T KNOW WHAT WILL
HAPPEN TO ALEXANDER AS I AGE,
BUT AT 39 I LAY TO SLEEP
EACH NIGHT AND PLAY PLANS OF
PREPARATION IN ORDER TO FIND
PEACE IN MY THOUGHTS THAT HE
WILL NOT BE ALONE OR IN
NEED.
I HOPE OUR CHILD OUT-LIVES
ME.
THIS IS MY DREAM, AND THIS
IS OUR STORY.

Back in the studio, Karen says ANNE LARCADE IS
HERE WITH US TODAY AND ALSO
JOINED BY LAUF LYNN CAMPBELL,
HER LAWYER AND LAWYER OF
OTHER PARENTS IN HER
POSITION.
WE WANT TO HEAR FROM YOU.
IF YOU'RE HAVING TROUBLE
FINDING HELP FOR YOUR
DISABLED CHILD OR IF IN YOUR
COMMUNITY YOU FIND YOU ARE
GETTING THE HELP, A SUCCESS
STORY, WE'D LIKE TO HEAR
THAT AS WELL.
OUR PHONE NUMBERS HERE IN
TORONTO 416-484-2727, LONG DISTANCE IS
1-888-411-1234. OUR E-MAIL ADDRESS IS
MORETOLIFE@TVO.ORG
ANNE, LAUGHLIN,
THANKS FOR COMING IN.
ANNE, I'D LIKE TO START WITH
YOU.
A BIT MORE ABOUT ALEXANDER
AND THE BACKGROUND.

The caption changes to “Anne Larcade. Mother of disabled child.”

Anne says HE WAS BORN
DEVELOPMENTALLY DELAYED SO
HE'S GOT AN INTELLECTUAL
DELAY THAT WAS MODERATE AT
THE TIME.
WENT THROUGH HORRIFIC HEALTH
CONCERNS EARLY IN HIS LIFE
AND NEARLY LOST HIM A FEW
TIMES.
HE'S GOT PHYSICAL
DIFFICULTIES AND BASICALLY
WE'VE DONE VERY WELL BECAUSE
HE'S HAD GOOD SUPPORT AND
GOOD FAMILY CARE.
AND RECENTLY HE'S BEEN
ASSESSED AS REGRESSING IN
THE LAST TWO YEARS.
SO BASICALLY WHAT'S
HAPPENING IS HE'S GOT A RARE
NEUROLOGICAL REGRESSIVE
DISORDER AND HE'S BACK TO
ABOUT A FOUR OR FIVE
INTELLECTUAL LEVEL AND HIS
BODY IS STARTING TO FAIL
HIM.

Karen says SO IN TERMS OF
WHAT YOU'VE GONE THROUGH AS
A PARENT IN FIND FINDING
HELP FOR HIM, WHEN DID YOU
DECIDE THAT YOU COULDN'T DO
IT AND THAT YOU NEEDED TO
GET ALEXANDER INTO A GROUP
HOME?

Anne says FIRST OF
ALL I'D LIKE TO SAY IT'S
ALWAYS BEEN OUR GUIDING
PRINCIPAL TO INTEGRATE
ALEXANDER AND WE'VE ALWAYS
WANTED HIM TO BE IN OUR
HOME.
BUT ABOUT TWO AND A HALF, OR
TWO YEARS AGO WE STARTED
SPIRALLING DOWN VERY BADLY
AND I STARTED -- REALLY
LOOKING FOR SERVICE IS VERY
HARD.

Karen says WAS THAT IN TERMS
OF RESPITE CARE, TO GET A
BREAK OR PEOPLE THAT COME
INTO THE HOME?
WHAT DID YOU FIND THAT WAS
AVAILABLE TO YOU?

Anne says WE WENT THROUGH A COMPLEX
MYRIAD OF AVENUES AND AT
FIRST WE WERE LOOKING FOR
RESPITE, SOMEONE TO COME IN
FOR A FEW HOURS, GIVE US A
BREAK AND ALLOW ME TO FOCUS
ON OUR OTHER CHILD.
WE LOOKED AT THAT, PROGRAMMES
TO GET HIM INTO IN THE
COMMUNITY AND PROBABLY
LOOKED AT FIVE OR SIX
DIFFERENT THINGS AND THE
RESOURCES WEREN'T THERE,
FRANKLY.

Karen says A STORY THAT WE
HEAR THAT IS VERY COMMON
WITH PARENTS WITH DISABLED
CHILDREN IS IT TAKES A TOLL
ON THEIR MARRIAGE.
WOULD THAT BE ALL RIGHT TO
SHARE THAT IN TERMS OF -- I
KNOW THIS HAS BEEN A VERY
PUBLIC STORY FOR YOU.
IT'S VERY DIFFICULT, BUT I
THINK THAT WE CAN LEARN FROM
YOU AND GET THE -- PARENTS
LIKE ME, THAT DON'T KNOW
WHAT IT'S LIKE TO SUFFER
EVERYDAY AND TRY TO HELP A
CHILD WHO'S SEVERELY
DISABLED.
WHAT WAS IT LIKE FOR YOU AND
YOUR HUSBAND?

Anne says UM, WELL I'VE HEARD
STATISTICS THAT 50 PERCENT TO 60 PERCENT
OF PARENTS OF SPECIAL NEEDS
CHILDREN END UP IN DIVORCE,
AND I -- I CAN ONLY RELAY TO
YOU IN OUR SPECIFIC CASE
THAT YOU DEAL WITH SLEEP
DEPRIVATION, A TOTAL FOCUS
OF -- EVERYTHING IN YOUR
LIFE IS AROUND YOUR CHILD
AND OBVIOUSLY THAT ISN'T
ALWAYS VERY HEALTHY.
SO TO SUMMARISE, IT'S
EXTREMELY STRESSFUL.
YOUR FAMILY SOMETIMES HAS
DIFFICULTY IN RELATING TO
YOU AND THE TORTURES YOU'RE
TRYING TO CARRY AND THE
DECISIONS YOU'RE TRYING TO
MAKE AND IT JUST RESULTS IN
COMMUNICATION BARRIERS.

Karen says BECAUSE PEOPLE
STAND BACK AND TRY TO
PICTURE WHAT IT'S LIKE IN
YOUR WORLD AND I DON'T THINK
WE TRULY EVER COULD.
SO I APPRECIATE YOU SHARING
THAT, BECAUSE I KNOW IT'S
PERSONAL.
LAUGHLIN, LET'S GET TO SOME
OF THE NITTY GRITTY OF THIS
IN TERMS OF THE STORY'S HIT
THE NEWS HEADLINE, FRONT
PAGE NEWS AND THE FACT THAT
PARENTS LIKE ANNE HAVE BEEN
PUT INTO A SITUATION NONE OF
US COULD EVER IMAGINE.
HOW DID WE GET TO THIS?

The caption changes to “Laughlin Campbell. Lawyer.”

Laughlin is in his mid-thirties, clean-shaven and with short wavy light brown hair. He wears a blue suit, pale blue shirt and patterned tie.

He says WELL,
THESE PARENTS, CHILDREN HAVE
PREVIOUSLY BEEN PROVIDED FOR
THROUGH WHAT'S CALLED A
SPECIAL NEEDS AGREEMENT.
IT'S IN CHILD AND FAMILY
SERVICES ACT A PIECE OF
ONTARIO LEGISLATION THAT IN
ANOTHER PART OF THE ACT
DEALS WITH THE CHILDREN'S
AID SOCIETY.
THOSE AGREEMENTS STOPPED
BEING OFFERED BY THE
GOVERNMENT.
FUNDING WAS CUT OUT BY
MINISTRY DIRECTIVE IN APRIL
OF 1999 WHEN JANET ECKART
WAS STILL MINISTER AND
CONFIRMED IN ANOTHER
DIRECTIVE IN SEPTEMBER OF
1999.
AND SINCE THAT TIME, THE
GOVERNMENT HAS NOT BEEN
ENTERING INTO SPECIAL NEEDS
AGREEMENTS.
MY UNDERSTANDING IS THAT
THERE'S A PLAN IN PLACE TO
TRANSFER THOSE SERVICES TO
COMMUNITY-BASED AGENCIES,
BUT WHEN WE'RE TALKING ABOUT
CHILDREN WITH MULTIPLE
SPECIAL NEEDS LIKE ALEXANDER
OR LUCA ROSATTI OR SOME OF
THE OTHER CHILDREN THAT I'M
REPRESENTING, THERE'S NOT
EVEN CLOSE TO AN APPROPRIATE
LEVEL OF COMMUNITY SERVICE.

Karen says AND THE ROSATTI
STORY IS IMPORTANT TO THIS
BECAUSE THIS IS WHAT GOT ALL
OF THIS STARTED IN TERMS OF
A BRAMPTON FAMILY WHOSE SON
LUCA, THEY WERE FIGHTING FOR
THE EXACT SAME THING TO KEEP
CUSTODY OF THEIR CHILDREN
AND THEN ANNE, YOU CAME
FORWARD.
BUT LET'S GET BACK TO THE
SPECIAL CARE AGREEMENT
BECAUSE WHAT THE GOVERNMENT
HAS SAID THEIR MANTRA HAS
BEEN FROM THE GET-GO IS
ABOUT GETTING NOT ONLY
HEALTHCARE BUT SPECIAL NEEDS
CARE BACK INTO THE COMMUNITY,
BACK INTO THE HOME SO THEY
DECIDED -- THEY SET THE
DEADLINE AS OF 1999 IN THE
SPRING TO HAVE A WHOLE NEW
APPROACH TO THE WAY THEY DID
IT.
AND A LOT OF PEOPLE SAID
“HEY, THIS IS ABOUT KEEPING
THE FAMILIES TOGETHER.”
THIS IS ABOUT
DE-INSTITUTIONALIZING THESE
CHILDREN AND KEEPING THEM
TOGETHER SO A LOT OF PEOPLE
APPLAUDED THAT SO WHAT WENT
WRONG SINCE THEN?
WELL THERE'S NO MAGIC ABOUT.
IT DOESN'T SPECIFY THE CHILD
HAS TO LIVE IN A SPECIAL
NEEDS HOME.
IT'S A DIFFERENT AGREEMENT
IN EVERY CASE.
THE MINISTER CAN AGREE TO
PROVIDE FUNDING FOR WHATEVER
SERVICES ARE REQUIRED.
THERE'S NOTHING IN A SPECIAL
NEEDS AGREEMENT THAT
REQUIRES A CHILD TO BE OUT
OF HOME.
SO I DON'T THINK THAT
THAT'S -- IF THAT'S WHAT THE
GOVERNMENT IS SAYING I DON'T
THINK THAT THAT'S A
LEGITIMATE REASON FOR
REFUSING TO AUTHORIZE
SPECIAL NEEDS AGREEMENTS.

Karen says HOW MUCH THIS IS
ABOUT MONEY IN TERMS OF
FUNDING?

Laughlin says I'M NOT PRIVY TO THE
BUDGET.
IT DOESN'T -- WHAT I'M TOLD
BY VARIOUS CHILDREN'S AID
SOCIETIES AND MINISTRY
OFFICIALS WHO PROBABLY DON'T
WANT TO SAY ANYTHING ON THE
RECORD IS THAT THE MINISTRY
STOPPED ISSUING THE FUNDING
AND SAID THAT IF THE KINDS
OF SERVICES STILL HAD TO BE
PROVIDED THEY HAD TO PROVIDE
IT OUT OF THEIR EXISTING
BUDGETS.
SPECIAL NEEDS AGREEMENTS HAD
BEEN FUNDED DIRECTLY FROM
THE MINISTRY CORPORATE IN
EACH CASE SO IT SEEMS LIKE
THERE WAS A NET LOSS OF
FUNDING.
IT DOESN'T MAKE MUCH SENSE,
THOUGH, BECAUSE YOU WOULD
LOOK AT IT YOU WOULD THINK
THAT DEALING WITH THE
CHILDREN'S AID SOCIETY,
WHICH INVOLVES A FRONT LINE
SOCIAL WORKER, WHO PROBABLY
HAS OTHER THINGS HE OR SHE
COULD BE DEALING WITH, AS
WELL AS THE BUREAUCRACY,
THEY HAVE A VERY SET PROCESS
FOR DEALING WITH THESE
CASES.
PLAN OF CARE MEETINGS, IT
SEEMS LIKE THERE'S A LOT
MORE BUREAUCRACY, PAPERWORK
AND MANPOWER INVOLVED --

Karen says AND THE IRONY IS
THAT THEY'RE SAYING IT'S
SUPPOSED TO GET AWAY FROM
THAT.
IT'S SUPPOSED TO STREAMLINE,
MAKE IT MORE EFFICIENT.
NOW THE CHILDREN'S AID
SOCIETY'S ROLE IS WHAT
THEY'VE SAID, THAT THIS IS A
BIG PART OF THIS STORY, IS
THAT THEY FUND FOR SIX
MONTHS AND THEN THEY CUT OFF
THE FUNDING.
AND THIS IS WHERE THIS IDEA
OF GIVING UP CUSTODY OF OUR
CHILDREN -- THIS IS WHAT'S
HORRIFIED SO MANY ONTARIANS,
TO THINK THAT ANYONE HAS TO
GIVE UP THEIR CHILD SO
THAT'S HOW IT WORKS, TOO, IN
TERMS OF THE CHANGE.
THE C.A.S. WILL ONLY GIVE SO
MUCH MONEY AND THEN YOU HAVE
TO GET INTO THIS WHOLE NEW
CATEGORY.
AND I THINK WE NEED SOME
CLARIFICATION ON THAT.

Laughlin says WELL,
THE CHILDREN'S AID SOCIETY
IS LIMITED IN WHAT THEY CAN
DO BY THEIR LEGISLATION.
THEY'RE ONLY ALLOWED TO
PROVIDE FUNDING UNDER
CERTAIN SECTIONS OF THEIR
ACT OR CARE AND THEIR ACT
REQUIRES THEM -- UNLESS THEY
GET SPECIAL WRITTEN
EXTENSION, TO TERMINATE A
TEMPORARY AGREEMENT AFTER
SIX MONTHS, AND HAVE A MORE
PERMANENT AGREEMENT WHERE
THERE'S A -- A CHILD IS MADE
A WARD OF THE CHILDREN'S AID
SOCIETY IT.
CAN BE UP TO A YEAR WITH
SPECIAL WRITTEN EXTENSIONS,
BUT THAT'S THE ONLY MEANS
THE CHILDREN'S AID SOCIETY
HAS.
AND IN MANY CASES THEY'VE
BEEN BRINGING PROTECTION
APPLICATIONS, TO MAKE THE
CHILD A WARD OF THE SOCIETY,
WHERE THERE'S REALLY NO
PROTECTION ISSUE, OR ELSE
YOU HAVE A SITUATION WHERE
YOU HAVE A CHILD WHO'S SAY
12 YEARS OLD, AUTISTIC, HAS
TOURETTE'S SYNDROME, CAN BE
VIOLENT AND THERE'S A
YOUNGER CHILD IN THE HOPE.
WELL IN THOSE CASE THERE IS
IS PROBABLY A PROTECTION
ISSUE WITH RESPECT TO THE
YOUNGER CHILD BUT I THINK
THE ISSUE IS THAT THERE
WOULD BE NO PROTECTION ISSUE
IF THE FUNDING WERE
AVAILABLE THROUGH OTHER
MEANS.

Karen says SO ANNE, YOU WERE
ON THE VERGE OF GIVEING UP
CUSTODY FOR ALEXANDER BEFORE
YOU HEARD THIS STORY ABOUT
THE ROSATTI'S SO WHAT WAS
THIS SITUATION IN YOU WERE
JUST ABOUT TO BE AT THE END
OF YOUR SIX MONTH FUNDING
FOR THE GROUP HOME IN GUELPH?

Anne says YES, AND
YOU HAVE TO UNDERSTAND THIS
IS AFTER BEING TOLD BY
GOVERNMENT PEOPLE TO ABANDON
ALEXANDER AT HOSPITAL WITH A
NOTE TO GET SERVICES TO GO
BY AMBULANCE TO GET SERVICE,
WHICH WE DID.

Karen says WHO SUGGESTED YOU
LEAVE HIM IN A HOSPITAL WITH
A NOTE?

Anne says TWO
GOVERNMENT AGENCIES WHO I
WAS DEALING WITH WHO -- I
MEAN, THEY ARE VERY WELL
AWARE OF THE LACK OF
SERVICES AND THEY BASICALLY
SAID WHAT YOU NEED TO DO IS
ABANDON YOUR CHILD AT
HOSPITAL WITH A NOTE.
AND THAT WAS LAST NOVEMBER.
AND ACTUALLY THERE WAS A
CASE IN THE UNITED STATES
WITH A FAIRLY WELL-OFF
FAMILY THAT DID THAT.
AND OF COURSE THAT DIDN'T
RESULT VERY WELL FOR ANYONE.

Karen says WHEN THEIR RESPITE
CARE COMPLETELY FELL APART
BECAUSE OF HOLIDAYS SO THEY
WERE BACK TO DOING AROUND
THE CLOCK.
THAT STORY GOT A LOT OF
ATTENTION.
I AM ABSOLUTELY SHOCKED THAT
THAT SUGGESTION WAS MADE TO
YOU.
BY A GOVERNMENT AGENCY
OFFICIAL?
TO LEAVE YOUR CHILD IN A
HOSPITAL WITH A NOTE?

Anne says YEAH.
TWICE.

Karen says THIS IS A
SUGGESTION.

Anne says TWICE.
SO THAT WAS A SUGGESTION.
OBVIOUSLY I WASN'T PREPARED
TO DO THAT WE DID GO BY
AMBULANCE TWICE TO TRY AND
GET SERVICES AND ASSESSMENT.
THEN WE WENT -- YOU KNOW, 21
DAYS THROUGH CHRISTMAS AND
THE NEW MILLENNIUM HOLIDAY I
DIDN'T SAT AT HOME MY CHILD
WAS IN LOCKDOWN AT A
PSYCHIATRIC INSTITUTE IN
ORDER TO GET ASSESSMENT.
WE'D BEEN THROUGH TWO GROUP
HOMES AND WE'RE ONTO OUR
THIRD SO WHEN THIS WHOLE
CUSTODY ISSUE CAME UP,
ALTHOUGH THE WORKERS I WAS
WORKING WITH CHILDREN'S AID
WERE DOING A VERY GOOD JOB,
THEY DIDN'T HAVE THE
PARAMETERS.
AND I KEPT SAYING THIS IS
WRONG.
THIS ISN'T RIGHT.
IT FEELS LIKE IT'S
UNCONSTITUTIONAL.
IT COULD BE DISCRIMINATORY,
BUT I'M A GOOD PARENT.
WHY?!
WHY?!
AND NO.
BUT I DIDN'T KNOW HOW TO
FIGHT IT.
SO THE CALLS I MADE WENT
UNANSWERED TO VARIOUS
GOVERNMENT PEOPLE AND I WAS
FEELING VERY LONELY AND
ISOLATED.
AND WE'D BEEN TO COURT ONCE
AND HAD IT TRANSFERRED FROM
THE REGION WE WERE LIVING IN
TO MUSKOKA.
AND WE WERE -- WE WERE
GIVING UP.
WE WERE GIVING UP.
WE WERE SAYING, YOU KNOW, IF
IT'S CARE OR CUSTODY, I'LL,
I'LL DO ANYTHING FOR MY
CHILD.

Karen says BECAUSE THIS WAS
AN ISSUE AGAIN OF FUNDING.
THE ONLY WAY YOU COULD GET
THE MONEY TO SUPPORT HIM IN
THE APPROPRIATE ENVIRONMENT
WAS TO GIVE UP CUSTODY.

Anne says YES.
YES.
AND I DIDN'T WANT TO LOSE
THE SPOT BECAUSE I DON'T
KNOW WHERE ALEXANDER'S GOING
WITH HIS REGRESSION RIGHT
NOW.
MEAN ULTIMATELY ALEXANDER
COULD DIE IN THE NEXT FEW
YEARS AND NEED LIFE SUPPORT
SO UNTIL WE DETERMINE THAT,
YOU'RE VERY AFRAID TO LOSE
YOUR SPOT, BECAUSE YOU MAY
NEED IT AGAIN, AND YOU
FOUGHT SO HARD TO FIND THE
SERVICES.

Karen says NEVER MIND SOME
FORM OF CONTINUITY FOR
ALEXANDER.
TOO MUCH MOVING AROUND, WITH
THE CHALLENGES HE HAS.

Anne says AND HIS BROTHER.
HIS YOUNGER BROTHER'S BEEN
VERY AFFECTED BY ALL OF THIS
SO WE WERE ABOUT TO GIVE UP.
WE WERE GIVING UP AND UP
POPPED A STORY IN THE
NEWSPAPER AND I IMMEDIATELY
CALLED MISTER CAMPBELL AND FELT
SOME, SOME URGENCY TO DEAL
WITH OUR MATTER AS IT WAS
COMING TO COURT AGAIN THAT
WEEK.

Karen says NOW THERE'S
ANOTHER ELEMENT TO THIS
STORY, THAT AGAIN IT HAS TO
BE DISCUSSED IN TERMS -- AND
WE HAVE YOUR PERMISSION FOR
THIS BECAUSE IT IS DIFFICULT
ABOUT ALEXANDER IN THE
SCHOOL SYSTEM AND THE
ATTEMPT YOU MADE TO HAVE IT
HIM -- WHICH WE HEAR A LOT
ABOUT, INTEGRATION.
COHESION IN TEMPS OF HAVING
ABLE BODIED AND DISAIBLD,
MENTALLY CHALLENGED AND THE
TYPICAL STUDENT.
WHAT WENT WRONG WITH
ALEXANDER'S CASE?

Anne says WELL, VERY DIFFICULT TO
TALK ABOUT.
IN FACT I'VE JUST RECENTLY
STARTED TALKING ABOUT IT,
BUT WHEN WE TRANSFERRED FROM
ONE PART OF ONTARIO,
ALEXANDER WAS DEEMED AS
DOING EXTREMELY WELL IN AN
INTEGRATED SETTING WITH THE
SUPPORT OF INCOME A CLASS
WHERE HE HAD ACCESS TO A
FULL-TIME TEACHER'S
ASSISTANT.
AND WHEN WE TRANSFERRED TO
ANOTHER PART OF ONTARIO
AROSE A FIGHT, I'LL CALL IT
A BATTLE, AN ADVOCACY, WHERE
I COULDN'T ACCESS THAT FOR
MY CHILD, FOR ALEXANDER.
I WAS VERY FRIGHTENED,
BECAUSE IT HAD TO DO WITH
SAFETY AS WELL AS LEARNING
AND WHAT RESULTED A FEW
MONTHS LATER WAS ALEXANDER
WAS AT RECESS WITH 600
STUDENTS, NOT ATTENDED.
THERE WERE THREE TEACHERS
OUT, AND HE WAS ABDUCTED AT
RECESS BY A STRANGER, TAKEN
TO THE BOILER ROOM, BADLY
BURNED BY A STEAMER WHERE HE
WAS SAT ON BOILER PIPES
WHICH WAS MEANS TO HAVE
ALEXANDER BASICALLY EXPOSE
HIMSELF AND THEN BE ABUSED.
IT WAS HORRIFIC.
IT WAS JUST HORRIFIC.

Karen says AND YOU BLAME THE
SCHOOL BECAUSE THEY DIDN'T
HAVE ENOUGH IN TERMS OF
PEOPLE WHO WERE WATCHING OUT
FOR ALEXANDER'S WELL BEING?
WHERE DO YOU THINK THAT THE
FAULT LAYS FOR THAT?
LIES FOR THAT?

Anne says WELL, I
DON'T KNOW THAT I'M CLEAR ON
THAT QUESTION TO ANSWER IT.
I KNOW THAT THE PROVINCE AND
THE SCHOOL BOARDS HAVE A
COMMITMENT THAT IF A CHILD
IS DEEMED TO REQUIRE THIS
ASSISTANCE, AND THEY'VE
ALREADY HAD IT, THERE IS
SUPPOSED TO BE A MECHANISM
IN PLACE TO ALLOW TO YOU
CONTINUE THAT.
AND YOU HAVE TO REMEMBER,
ALEXANDER'S LIKE FOREST
GUMP.
HE TRUSTS EVERYONE.
HE DOESN'T UNDERSTAND WHY
PEOPLE WOULD BE BAD.
HE'S VERY, VERY TRUSTING.
I THINK EVERYONE COULD SEE
THAT, AND UM.... I FOUGHT
HARD AND I DIDN'T GET.
WHERE THE BLAME LAYS WOULD
HAVE TO BE FURTHER
DETERMINED.
BUT IT SHOULDN'T HAVE
HAPPENED, IN MY OPINION.
IT SHOULDN'T HAVE HAPPENED.

Karen says AND THIS, AGAIN,
WITH YOUR RESEARCH IN THIS,
AND YOUR INVOLVEMENT IN THIS,
LOUGHLIN, DO YOU THINK THIS
COMES BACK TO FUNDING
DOLLARS?
THAT THERE JUST ISN'T ENOUGH
IN TERMS OF SUPPORT IN THE
SCHOOLS TO HAVE INTEGRATION
WORK APPROPRIATELY?
OR MAYBE THAT MIGHT NOT HAVE
BEEN THE BEST ROAD FOR
ALEXANDER, BUT THAT WASN'T
DETERMINED OR DEEMED BECAUSE
THERE WASN'T ENOUGH OF AN
ASSESSMENT BECAUSE OF LACK
OF MONEY?
DO WE COME BACK TO THE
MIGHTY DOLLAR?

Laughlin says WELL
ULTIMATELY, YEAH, WE DO.
THERE'S NO QUESTION.
IT'S PROBABLY A DIFFERENT
MINISTRY BUDGET.
IT'S THE MINISTRY OF
EDUCATION, PROBABLY, AND
MAYBE SPECIAL NEEDS CHILDREN
SHOULD BE LOOKED AFTER
THROUGH A CROSS MINISTRY
SORT OF GROUP.
WHETHER IT'S THE SCHOOL
BOARD ALLOCATING ITS LIMITED
BUDGET THAT HAD BEEN CUT BY
THE GOVERNMENT, OR THE
GOVERNMENT INDICATING THAT
T.A.s WERE CUT OUT, I THINK
ANNE PREFER, WOULD PREFER
THAT ALEXANDER WAS
INTEGRATED, THAT HE WAS
MAKING MORE PROGRESS.
THE THING IS -- THAN HE IS
RIGHT NOW.
RIGHT NOW HE IS STILL AT
SCHOOL BUT HE'S IN A SPECIAL
NEEDS SORT OF CLASSROOM, AND
OF COURSE THERE'S ALL
DIFFERENT KINDS OF CHILDREN
THERE WITH ALL DIFFERENT
KINDS OF DISABILITIES, AND I
THINK ANNE CERTAINLY FEELS
AND A LOT OF OTHER PARENTS
FEEL THAT HE'D BE BETTER
SERVED IN AN INTEGRATED
CLASSROOM.
BUT YOU CAN'T HAVE AN
INTEGRATED CLASSROOM, I
DON'T THINK, WITHOUT A
FULL-TIME T.A. FOR STUDENTS
LIKE THAT.
AND THAT FUNDING WAS CUT.
AND YOU WOULD HAVE TO ASSUME
THAT THAT'S A PURELY
FINANCIAL ISSUE.
IT WILL BE LOOKED AT MORE
CLOSELY, LIKELY BY A COURT
IN THE FUTURE.

Anne says CAN I JUST
INTERCEDE SOMETHING IN
THERE?

Karen says SURE, YEAH.

Anne says BECAUSE YOU
MENTIONED SAVING DOLLARS.
I WAS TOLD ALEXANDER MIGHT
NOT LIVE WHEN HE WAS 18
MONTHS.
HE MAY NEVER READ OR WALK OR
TALK, AND IN EFFECT, BY
HAVING GOOD EDUCATION FOR
ALEXANDER, HE'S SUPERSEDED
ALL EXPECTATIONS, SO IT'S
ACTUALLY COST EVERYONE LESS
MONEY BECAUSE HE'S
PRODUCTIVE.
AND MANY CHILDREN THAT ARE
SPECIAL NEEDS, IF GIVEN THE
PROPER LOVE AND ENVIRONMENT
AND COMMUNITY AND EDUCATION,
SUPERSEDE GOALS AND BECOME
PRODUCTIVE TAXPAYERS.
SO THERE'S A LITTLE PAY IN
THE SHORT TERM, BUT THERE
COULD BE A LOT OF GAIN IN
THE LONG-TERM.

Karen says THE BIG PICTURE
THINKING.

Anne says RIGHT.

Karen says WHAT WE'RE DOING
TODAY IS LOOKING AT FAMILY
WHOSE DEAL WITH SPECIAL
NEEDS CHILDREN, THE
CHALLENGES THEY HAVE IN THE
FUTURE AND THEIR DEALINGS
WITH THE GOVERNMENT AND
WE'RE GETTING PARENTS -- WE
HAVE PARENTS STANDING BY WHO
ARE GOING TO SHARE THEIR
STORIES WITH US, BUT YOUR
INVOLVEMENT AS WELL.
IF YOU HAVE A SPECIAL NEEDS
ANDILD IF YOU'RE HAVING
TROUBLE FINDING HELP FOR
THEM OR IF YOU HAVE A GOOD
EXAMPLE, A SUCCESS STORY IN
YOUR COMMUNITY WHERE YOU
FIND SOME SORT OF
COORDINATED HELP, WE'D LOVE
IT HEAR ABOUT THAT, TOO.
416 484-2727,THAT’S IN TORONTO.
LONG DISTANCE IS TOLL FREE
1-888-411-123.
OUR e-mail ADDRESS IS MORETOLIFE@TVO.ORG
WE HAVE GWEN
CODDLE ON THE LINE WITH US
NOW.
SHE IS A MOTHER WHO GAVE UP
CUSTODY OF HER SPECIAL NEEDS
DAUGHTER AND SHE JOINS US.
HI GWEN.

Gwen says CALLER: HI.

Karen says CAN YOU GIVE US
SOME BACKGROUND ON YOUR
STORY TO START?

The caption changes to “Voice of: Gwen Caudle. Mother of disabled child.”

Gwen says OKAY.
BASICALLY I HAVE A
10-YEAR-OLD DOLLAR WHO HAS A
GLOBAL DEVELOPMENTAL DELAY,
AND SHE CAN'T SPEAK, AND
SHE -- BUT SHE CAN
COMMUNICATE USING A BIT OF
SIGN LANGUAGE, AND SHE DOES
HAVE A FEW PHRASES THAT SHE
CAN SAY.
HER MOTOR SKILLS ARE
EXTREMELY DELAYED.
HER FINE MOTOR SKILLS,
PROBLEM SOLVING, ET CETERA,
AND BASICALLY MY MARRIAGE
ALSO FAILED AFTER FIVE YEARS,
DUE IN LARGE PART TO THE
STRESSES THAT CARING FOR MY
DAUGHTER BROUGHT, AND I
STRUGGLED FOR FOUR YEARS ON
MY OWN TRYING TO TAKE CARE
OF JULIE AND WORKING A
FULL-TIME JOB WITH MINIMAL
SUPPORTS.
BASICALLY SIX HOURS A WEEK
OF SPECIAL SERVICES AT HOME.

Karen says THAT WAS THE TOTAL
OF YOUR RESPITE CARE?

Gwen says I HAD NO RESPITE.
THAT'S JUST CONTRACT WORK
OR --

Karen says IN HOME.

Gwen says RIGHT.
MY RESPITE CONSISTED OF
JULIE GOING TO HER FATHER'S
EVERY OTHER WEAKEN.
I WAS VERY FORTUNATE TO HAVE
THAT.
MARRIED COUPLES OBVIOUSLY
DON'T HAVE THAT.

Karen says GWEN, WHAT
HAPPENED WHEN IT CAME DOWN
TO THE DECISION OF WHETHER
OR NOT TO GIVE UP CUSTODY?
WHAT WERE THE CIRCUMSTANCES
SURROUNDING THAT?

Gwen says WELL I HAD --
ACTUALLY JULIE'S BEHAVIOUR
WAS DETERIORATING OVER THE
YEARS, AND IT BECAME
UNBEARABLE.
I JUST COULDN'T COPE WITH IT
ANYMORE, AND I KNEW I JUST
COULDN'T GO ON.
I WAS -- I WAS AFRAID, YOU
KNOW?
SHE NEEDED CONSTANT
SUPERVISION EVERY MINUTE.
SOMEBODY TO BE WITH HER.
AND I KNEW THERE WAS NO
FUNDING.
AND THE ONLY PLACE THAT YOU
COULD GO FOR HELP WAS TO THE
CHILDREN'S AID SOCIETY.
NOW THAT'S SUPPOSED TO BE A
CHILD PROTECTION AGENCY.
SO ANYWAYS, I SWALLOWED MY
PRIDE AND I WENT WITH OUR
COMMUNITY LIVING WORKER
THERE, AND ASKED FOR THE
HELP THAT I NEEDED IN CARING
FOR MY DAUGHTER.

Karen says ANNE, GWEN USED
THE WORD PRIDE.
SHE SWALLOWED HER PRIDE TO
DO THAT.
IS THAT WHAT PARENTS FACE
WHEN IT COMES TO MAKING THAT
TYPE OF DECISION?

Anne says VERY REAL.
VERY REAL.
ABSOLUTELY.
YOU DON'T VIEW C.A.S. AS AN
ORGANIZATION THAT TYPICALLY
UNDERSTANDS OR HAS EDUCATION
OR HISTORY WITH SPECIAL
NEEDS CHILDREN, AND YOU VIEW
YOURSELF AS A WONDERFUL,
LOVING PARENT OVER THE
REGULAR MEANS.
SO IT IS -- YOU DO SWALLOW
YOUR PRIDE.

Laughlin says AND IF
I COULD JUST ADD AN
EXPERIENCE THAT ANNE AND I
BOTH HAD RECENTLY, WHEN WE
WERE MEETING WITH MINISTRY
OFFICIALS TO RESOLVE THE
CASES THAT HAVE BEEN RESOLVED,
A VERY SENIOR MINISTRY
OFFICIAL, THE SENIOR
OFFICIAL FOR PEEL REGION
ASKED BOTH THE RASATTI
FAMILY AND MISSUS LARCADE
WHETHER THEY HAD CONSIDERED
FOSTER CARE.
OR THEY SOMETIMES TERM IT AN
“ASSOCIATE PARENTING
ARRANGEMENT” OR AN ASSOCIATE
HOME.
AND I THINK THE SUGGESTION
THAT THESE PARENTS ARE
SIMPLY INEPT AND THAT
ANOTHER PARENT WHO -- I
THINK THAT'S WHAT'S IMPLIED,
IS THAT SOMEONE ELSE COULD
DEAL WITH YOUR CHILD BETTER.

Karen says IS THAT THE
CONNOTATION THOUGH
SURROUNDING AN ORGANIZATION
LIKE THE C.A.S. AND FOSTER
CARE, THAT THAT'S WHERE
TRADITIONALLY CHILDREN,
TROUBLED CHILDREN GO OR
THOSE WHO NEED PROTECTION GO,
BUT TO BE FAIR IS THAT NOT
MAYBE A SUGGESTION IN TERMS
OF SOMEBODY ELSE COMING IN
AND HELPING OUT?
FORGET THE LABEL THAT IT'S
FOSTER CARE.
COULD IT NOT HAVE BEEN A
REALISTIC SNUGS THAT SOMEONE
ELSE COULD BE RESPONSIBLE?

Anne says IT'S
INSULTING.
IT'S INSULTING.

Laughlin says THEY'RE NOT TALKING ABOUT
GIVING YOU THE HELP YOU NEED
IN YOUR HOME.
WHAT YOU WERE ASKED WAS HAVE
YOU CONSIDERED PLACING THE
CHILD WITH SOMEBODY WHO'S
MORE ABLE.
AND WE'RE TALKING ABOUT
PARENTS WHO HAVE DONE
EVERYTHING HUMANLY POSSIBLE
TO LOOK AFTER THEIR
CHILDREN.
WE'VE TALKED ABOUT RESPITE
CARE AND WE'LL BE HEARING
FROM THE MINISTRY LATER.
BUT ANNE'S EXPERIENCE WITH
RESPITE CARE, YOU WERE
OFFERED 2,000 RESPITE CARE DOLLARS
A YEAR.
THE MAXIMUM WAS APPLIED FOR
WAS 10,000 DOLLARS WHICH IS STILL
WILLFUL AND ANNE WAS
EXPECTED TO ALLOCATE THAT
2,000 DOLALRS TO BUY 200 HOURS OF
RESPITE CARE AT 10 DOLLARS AN HOUR.
IN CASES LIKE ALEXANDER AND
LUCA, HOW CAN YOU FIND
SOMEBODY FOR 10 DOLLARS AN HOUR
WHO'S GOT ALL THE YEARS OF
TRAINING AND EXPERIENCE
NECESSARY?
I MEAN, THOSE PARTICULAR
KIND OF INTERVENORS AND
RESPITE CARE WORKERS ARE IN
THE 25 DOLLARS AN HOUR RANGE AND IF
THE MINISTRY ALLOCATES
FUNDING ON A FIRST-COME
FIRST-SERVED BASIS, OR
THERE'S X NUMBER OF DOLLARS
AND THIS MUCH DEMAND ON IT
WILL DIVIDE IT
PROPORTIONATELY, IT'LL BE
USELESS.
10 DOLLARS AN HOUR?
THERE ARE TEENAGED
BABYSITTERS MAKING THAT
TODAY.
YOU'RE NOT GOING TO GET ANY
KIND OF QUALITY CARETOR
THAT.

Karen says GWEN, I JUST WANT
TO ASK YOU A QUESTION ABOUT
IN TERMS OF WHAT YOU WERE
MENTIONING, THE MINUTES OF
THE GOVERNMENT'S ROLE IN
THIS THE MINISTER
RESPONSIBLE, JOHN BAIRD,
SINCE THIS STORY BROKE HE
HAS SAID ANYONE WHO HAS
GIVEN UP CUSTODY WILL BE
REINSTATED IN TERMS OF ABLE
TO GET THEIR CHILDREN BACK
IN TERMS OF FUNDING.
WHAT'S YOUR SITUATION WITH
THAT?

Gwen says WELL, I'M
OBVIOUSLY HOPING TO REGAIN
CUSTODY OF MY DAUGHTER.
IF IT WERE AT ALL POSSIBLE,
I WOULD LOVE TO HAVE HER
LIVING AT HOME HERE WITH ME,
BUT AT THE MOMENT I CANNOT
CONTROL HER.
I CAN BARELY GET THROUGH AN
OVERNIGHT VISIT WITH HER.
SO AT THIS POINT, SHE NEEDS
TO REMAIN WHERE SHE IS.

Karen says BUT JUST TO HAVE
CUSTODY REINSTATED, JUST SO
THAT YOU KNOW THAT ON PAPER
YOU HAVE CUSTODY BACK.

Gwen says OH, YEAH.
I'LL HAVE SOME SAY OVER HER
MAJOR LIFE DECISIONS, WHICH
AT THIS MOMENT, I -- YOU
KNOW IN THEORY THEY SAID
THEY WOULD TAKE INTO
CONSIDERATION, BUT IN THE
END NO, I DON'T HAVE THE
FINAL SAY.

Karen says SO HAS THE
GOVERNMENT CONTACTED YOU?
ARE YOU IN THE WORKS OF THIS
PAPER WORK OR TALKS?

Gwen says NO, THE
GOVERNMENT HAS NOT CONTACTED
ME AND YES, WE ARE IN THE
MIDST OF TRYING TO GET
THINGS CHANGED.

Karen says GWEN, WE
APPRECIATE YOUR TIME HERE
THIS AFTERNOON.
THANKS FOR CALLING US.

Gwen says THANK YOU.
BYE-BYE.

Karen says GWEN CAUDLE, THE
MOTHER OF A DISABLED CHILD
AS WE GET STORIES AND
ANECDOTAL EVIDENCE ABOUT THE
DIFFICULTIES SO MANY PARENTS
IN THIS COUNTRY HAVE WITH
SPECIAL NEEDS.
GWEN TALKED ABOUT SOMETHING,
WHEN I SUGGESTED HAS THE
MINISTRY BEEN IN TOUCH WITH
HER AND SHE SAID NO, WHAT
I'VE HEARD WITH THIS STORY
IS IT'S REALLY UP TO PEOPLE
LIKE YOU, ANNE, AND THE
PARENTS, TO BE CHASING ALL
OF THIS DOWN.
THAT YOU HAVE TO APPROACH
THE MINISTRY.
ISN'T THAT FAIR, IN A SENSE?
THAT THE PARENT SHOULD
REALLY BE SAYING -- KNOCKING
ON THE DOOR AND SAYING WE
NEED HELP?
IS THAT SUCH A BIG DEAL,
ANNE IN THIS?

Anne says IT'S A BIG
DEAL BECAUSE OF THE
COMPLEXITIES OF THE LACK OF
SERVICES AND THE DIFFERENT
AGENCIES AND THE WAY THEY
ADMINISTER.
IT BECOMES A RESEARCH AND
ADVOCACY ROLE.
SO IT TAKES A LOT OF TIME
AND PATIENCE.
AND YOU HAVE BE GOOD AT
MULTI-TASKING AND ADVOCATING
AND IF YOU'RE NOT, YOU DON'T
GET.
IT'S AS EASY AS THAT.
SO, YOU KNOW, IF YOUR PARENT
WAS IN NEED OF A LONG-TERM
BED OR YOUR CHILD HAD CANCER
AND YOU NEEDED SERVICES, YOU
GO AND IT WORKS OUT PRETTY
WELL, BUT FOR US, IT
BECOMES -- I DON'T WANT TO
SAY A FULL-TIME OCCUPATION,
BUT A LIFE-LONG CHALLENGE.
AND THOSE ARE ALSO STRESSORS,
BECAUSE YOU'RE HAVING TO
FIGHT SO HARD.
AND YOU'RE WONDERING WHY?
WHY?
WHY IS THIS SO HARD?

Karen says YOU'RE TOLD TO GO
TO A COMMUNITY CARE CENTRE.
THAT'S BEEN SAID OVER AND
OVER AGAIN.
WHAT DO THESE -- WHAT ARE
THESE COMMUNITY CARE CENTRES
LIKE?
YOU'RE LAUGHING, LAUGHLIN.
THEY'RE THAT BAD?

Anne says THEY'RE
NEW.
THEY'RE IN INFANS SEE.
THE PRINCIPLE OF COMMUNITY
CARE ACCESS PROGRAMMES IS
GOOD, BUT AS I UNDERSTAND --
YOU KNOW, FIRST OF ALL WHERE
ARE THEY IN ONTARIO?
THERE'S AS AS I'M LEARNING A
REAL DISPARITY WITH SERVICE
OUTSIDE THE METRO AREA.

Karen says BECAUSE YOU'RE UP
NORTH, YOU'RE IN HUNTSVILLE.

Anne says AND SECOND
OF ALL SOME OF THESE DON'T
EVEN HAVE CHAIRPERSONS SET
UP.
YOU, THEY'RE IN INFANCY, AND
THERE IS -- AGAIN,
COMPLEXITIES INVOLVED.
AND PERHAPS YOU'D LIKE TO
ADDRESS THE QUESTION.

Laughlin says WELL,
I UNDERSTAND IT'S IN LIMBO
AS A RESULT OF THESE CASES.
LIKE THE SYSTEM IS IN FLUX,
BUT THIS IS A STATEMENT
MINISTER BAIRD MADE ON
FRIDAY JANUARY 5th, I GUESS
AND HE REFERRED TO COMMUNITY
ACCESS CENTRES.
AND I THINK WHAT HE'S
REFERRING TO IS CALLED
COMMUNITY CARE ACCESS
CENTRES.
AND THEY DO HAVE A MANDATE
TO PROVIDE SOME KIND OF
FUNDING, BUT THE LIMIT IS
15,000 DOLLARS PER CASE PER YEAR
UNDER THEIR MANDATE, AND YOU
MIGHT NOT GET ALL OF THAT
BECAUSE AS I SAID, THE
FUNDING IS ALLOCATED PRO
RATA.
IT'S COMPLETELY INADEQUATE
TO DEAL WITH THIS KIND OF A
CASE.

Karen says IT'S A CASEWORKER?
YOU'D GO TO THE CENTRE AND
BE ASSIGNED -- THIS IS HA
HOWE IT'S SUPPOSED TO WORK?
YOU GET THE CASEWORKER AND
THEY HELP YOU WALK THROUGH
THIS MINEFIELD ANNE'S BEEN
TALKING ABOUT?
IS THAT THE IDEA?

Laughlin says THAT
SOUNDS LIKE THAT'S WHAT HAS
BEEN PROPOSED.
I DON'T THINK THAT'S WHAT
COMMUNITY CARE ACCESS
CENTRES ARE, BUT THAT SOUNDS
LIKE WHAT'S BEEN PROPOSED TO
RESOLVE ANNE'S CASE.
THEY'VE INDICATED THAT
THEY'LL ASSIGN A CASE
MANAGER WHO IS NOT A DIRECT
MINISTRY EMPLOYEE.
THAT CASE MANAGER WILL
COORDINATE WITH ALL THE
DIFFERENT SERVICE PROVIDERS
THAT ARE REQUIRED FOR A
CHILD WITH MULTIPLE
DISABILITIES, AND THEY WILL
TELL THE GOVERNMENT WHAT
SERVICES ARE REQUIRED, AND
THE GOVERNMENT WILL PAY FOR
THE SERVICES.

Karen says THAT SOUNDS LIKE A
GOOD IDEA.

Laughlin says IT'S A
GREAT SYSTEM, BUT IT'S, IT'S
VERY, VERY EXPENSIVE AND FOR
THE GOVERNMENT TO MAKE THAT
KIND OF COMMITMENT ACROSS
THE BOARD WOULD REQUIRE A
MULTI-MILLION DOLLAR
INCREASE TO THE FUNDING THAT
IS CURRENTLY AVAILABLE.
PLUS WE'RE FINDING OUT THAT
AT THE GROUND LEVEL -- I
MEAN ANNE CAN DESCRIBE HER
EXPERIENCES IN THE PAST
WEEK.
AT THE GROUND LEVEL THE
PEOPLE DON'T KNOW WHAT'S
GOING ON.
THE MINISTRY WORKERS HAVE NO
IDEA HOW TO IMPLEMENT THE
AGREEMENT THAT WAS REACHED
BETWEEN THE SENIOR MINISTRY
OFFICIALS AND OURSELVES.
WE'RE SURE THAT THEY'RE
GOING TO GET TO IT.
I MEAN, IT'S SOMETHING NEW
FOR THEM AND WE'RE HAPPY
THAT IT EXISTS, BUT IT'S NOT
SEAMLESS YET.

Karen says A DISORGANIZED
GREETING?
IS THAT HOW -- IS THAT YOUR
EXPERIENCE?

Anne says VERY
COMMITTED PEOPLE WHO
UNDERSTAND THE ISSUES VERY
MUCH.
BUT I SPENT TWO AND A HALF
HOURS WITH TWO REGIONAL
PEOPLE.
SO AGAIN YOU HAVE TO GO
THROUGH YOUR WHOLE HISTORY
OF ELEVEN YEARS WITH YOUR
CHILD, IT'S LIKE GIVING A
DOCTOR'S HISTORY OF A
PATIENT AND SETTING UP
POTENTIAL SERVICE.
AND THEN I HAD A MEETING
YESTERDAY, AND I HAVE
ANOTHER CONFERENCE CALL ON
TUESDAY.
ALL OF WHICH IS DELIGHTFUL,
BECAUSE I'VE NEVER HAD SUCH
WILLING PEOPLE DEALING WITH
ME.
I WISH EVERY PARENT HAD
THAT.
BUT WHAT HAPPENS IS THEY
KNOW WHAT ALEXANDER NEEDS
AND THERE ARE NO SERVICES OF
WHAT WE'D EXACTLY LIKE.
SO THERE'S A SHORT AND A
LONG-TERM PLAN, AND, YOU
KNOW, THE SHORT TERM IS
TO -- FOR ME TO HAVE CUSTODY,
TO KEEP HIM IN THE GROUP
HOME FOR RIGHT NOW.
THE LONG-TERM IS TO
INTEGRATE HIM BACK INTO
HUNTS VILLE, EITHER INTO OUR
HOME OR A GROUP HOME, BUT
THERE'S NO GROUP HOMES IN
THE WHOLE REGION, AND YOU
KNOW, THEY'RE DOWN TO NITTY
GRITTIES LIKE ASKING ME WHAT
PAPER TO FILL OUT?
SO IT REALLY GETS COMPLEX.
AND THEN C.A.S. ALWAYS HAD A
WORKER TWO LIASE WITH THE
GROUP HOME.
YOU KNOW, WHO'S GOING TO DO
THAT?
AND THEY WON'T DRIVE 14 TO
16 HOURS LIKE I WILL ON
THESE ROUND-ABOUT TRIPS.
SO IT'S VERY CONFUSING, THE
PROCESS.
BUT WE'RE ALL TRYING TO SORT
SOMETHING OUT THAT WOULD
WORK FOR US, AND HOPEFULLY
FOR OTHER PARENTS.

Karen says WE'VE SPENT A LOT
OF TIME TALKING ABOUT THE
GOVERNMENT'S ROLE IN THIS,
SO WE WANT AN OPPORTUNITY TO
TALK TO THE GOVERNMENT, AND
THE MINISTER WASN'T
AVAILABLE BUT BART MAVES.
S IS ON THE LINE WITH US NOW,
THE PARLIAMENTARY ASSISTANT
TO JOHN BAIRD WHO IS THE
MINISTER OF COMMUNITY AND
SERVICE SERVICES.
BART, HELLO.

The caption changes to “Bart Maves. Conservative MPP.”

Bart says HI, HOW ARE YOU
DOING?

Karen says FINE, THANKS.
JUST LOOKING FORWARD TO
HEARING YOUR RESPONSE TO A
LOT OF THE ISSUES THAT HAVE
COME UP SO FAR.
LET'S START WITH WHAT IS
AVAILABLE NOW FOR PEOPLE
LIKE ANNE AND PARENTS WITH
SPECIAL NEEDS KIDS.

Bart says WELL, THERE ARE QUITE A
BIT OF SERVICES THAT ARE
AVAILABLE RIGHT NOW ACROSS
THE PROVINCE OF ONTARIO.
YOU KNOW, RESPITE SERVICES
AND IN-HOME RESPITE AND
SPECIAL SERVICES AT HOME
PROGRAMMES.
THERE'S COMMUNE COMBINATION
PROGRAMMES AROUND THE
PROVINCE.
WE'VE STARTED A BRND NEW
AUTISM INITIATIVE, WHICH I
THINK WE WERE ONE OF THE
FIRST JURISDICTIONS IN THE
WORLD TO HAVE A NEW 16 DOLLARS
MILLION AUTISM INITIALTIVE
TO PROVIDE INTERVENTION
SERVICES FOR CHILDREN UNDER
FIVE.
WE'VE GOT A LOT OF PRESCHOOL
SPEECH AND LANGUAGE
PROGRAMMES AND QUITE A FEW
PROGRAMMES, ACTUALLY THE
GOVERNMENT RUNS FOR BOTH
ADULTS AND CHILDREN'S
DEVELOPMENTAL DISABILITIES.
JOHN AND I -- MINISTER BAIRD
AND I, HAVE BOTH THIS PAST
YEAR GONE OUT AND TURD THE
PROVINCE TO SEE BOTH ADULT
AND CHILDREN'S DEVELOPMENTAL
SERVICES, COMMUNITY
PROVIDERS OF THESE SERVICES,
PARENTS, SOME OF THE ADULTS
AND CHILDREN THEMSELVES WHO
ACCESS THE SERVICES PROVIDED
BY THE PROVINCIAL
GOVERNMENT, AND WE'VE
ALREADY -- LAST YEAR AND
THIS YEAR, LAST YEAR WE PUT
IN AN INITIAL 30 MILLION DOLLARS,
THIS YEAR AN ADDITIONAL 50 MILLION
DOLLARS AND PART OF OUR TOUR
WAS TO DETERMINED LOOK, IF
WE MOVE FORWARD IN THIS AREA
AND ACCESS MORE DOLLARS,
WHERE SHOULD THESE DOLLARS
BEST BE GOING.
AND THAT'S WHAT WE'RE
TOURING ABOUT OVER THIS PAST
YEAR.
AND THESE ARE THE
CONVERSATIONS AND THE
CONSULTATIONS HAVE BEEN
ONGOING.

Karen says WELL BART, MAYBE WE
SHOULD BACK UP A FEW STEPS
HERE IN TERMS OF LOOKING AT
THE DEFINITION OF SPECIAL
NEEDS.
THE DEFINITION OF A DISABLED
CHILD.
THAT SEEMS TO BE WHERE ALL
THE CONFUSION IS SURROUNDING
WHO QUALIFIES FOR WHAT, HOW
MUCH AND WHEN SO WHAT DOES
THE GOVERNMENT USE IN TERMS
OF A CORE DEFINITION FOR
SPECIAL NEEDS?

Bart says WELL, I COULDN'T GIVE YOU
A CORE DEFINITION, BUT
THERE'S -- YOU KNOW, A LOT
OF DIFFERENT AGENCIES WHO
HAVE WORKED IN THIS FIELD
FOR MANY, MANY YEARS.
ONE OF THE PROBLEMS, AND I
THINK THAT THE FOLKS ON YOUR
PROGRAMME TALKED ABOUT THIS,
ONE OF THE BIGGEST PROBLEMS
IN THIS THIS FIELD IS
ACTUALLY COORDINATING THE
PROGRAMMES THAT EXIST AND
HELPING PARENTS.
QUITE OFTEN A DOCTOR WOULD
DIAGNOSE A PROBLEM AND THEN
THE DOCTOR WOULD REFER THAT
PARENT TO A PARTICULAR
AGENCY.
AND THEN THE PERSON IS KIND
OF LEFT ON THEIR OWN TO FIND
THEIR WAY THROUGH THE SYSTEM
AND FIND SERVICES
APPROPRIATE FOR THEM AND
THEIR CHILD.

Karen says BUT BART, WITH
RESPECT, IF YOU DON'T EVEN
START WITH A DEFINITION, IF
YOU DON'T EVEN START AS
SOMEONE WHO WORKS IN THIS
MINISTRY OF KNOWING WHAT
DEVELOPMENTAL DISABILITY
MEANS OR SPECIAL NEEDS
AND -- BEFORE YOU CAN EVEN
GET TO ALL OF THOSE SERVICES
AND WHO'S APPROPRIATE FOR
WHAT, YOU'D HAVE TO KNOW AS
A GOVERNMENT WHO YOU'RE
DEALING WITH, SO THEN YOU
CAN ACTUALLY GET NUMBERS OF
HOW MANY PEOPLE YOU'RE
TALKING ABOUT IN THE
PROVINCE, AND THEN START
ALLOCATING THE FUNDS.

Bart says WELL, THERE ARE OBVIOUSLY
ALL SORTS OF DEFINITIONS,
AND FOR MANY, MANY YEARS
WE'VE DELIVERED SERVICES IN
THIS FIELD.
SO THERE'S ALL KINDS OF KIDS
THAT ARE AUTISTIC, AND THERE
ARE OTHER DEVELOPMENTAL
DISABILITIES THAT KIDS HAVE.
AND THEY QUALIFY FOR
SERVICES.
THERE'S SPEECH DISORDERS AND
OTHER TYPES OF DISORDERS,
BLINDNESS AND HEARING
PROBLEMS AND SO ON AND SO
FORTH.
AND ALL OF THESE TYPES OF
PROBLEMS, THERE ARE SERVICES
AVAILABLE FOR THEM SO THERE
ARE ALL TYPES OF
DEVELOPMENTAL DISABILITIES,
AND THERE ARE SERVICES
THROUGHOUT THE PROVINCE FOR
THEM.
AND DO WE THINK THAT THERE'S
ENOUGH SERVICES OR ARE THERE
GAPS IN THE SERVICES?
I THINK ANDON I BOTH BELIEVE
THAT THERE ARE FROM THE TOUR
THAT WE'VE DONE, BOTH WITH
ADULTS' DEVELOPMENTAL
DISABILITIES AND CHILDRENS'
DEVELOPMENTAL DISABILITIES.

Karen says AND YOU BROUGHT UP
THE NUMBERS ISSUE IN YOUR
NEWS CONFERENCE LAST FRIDAY
THAT NO ONE'S REALLY SURE
HOW MANY PEOPLE WE'RE
DEALING WITH HERE IN TERMS
OF SPECIAL NEEDS.

Anne says I'M A
BUSINESS PERSON SO, SIMILAR
TO THE GOVERNMENT I LIKE
MAKING MONEY AND SAVING
MONEY.
I KNOW HOW MANY GUESTS I
HAVE COMING TO A HOTEL AND
HOW TO SERVICE THOSE
APPROPRIATELY.
SO I HAVE A DIFFICULT TIME
WHEN I'VE BEEN ASKING THE
GOVERNMENT HOW MANY SPECIAL
NEEDS CHILDREN ARE THERE
WE'RE SERVING AND HOW MANY
ADULTS OF?
BECAUSE YOU HAVE TO
UNDERSTAND, PARENTS ARE
HAVING CHILDREN OLDER, WE
HAVE PREMATURE BABIES THAT
WE ARE GIVING LIFE TO AND
SUSTAINING MUCH YOUNGER.
SO THIS -- I THINK WHAT'S
HAPPENING IS THE DEMAND IS
NOT MEETING THE SUPPLY.
AND I DON'T KNOW IF YOU HAVE
AN ANSWER, BUT NO ONE'S BEEN
ABLE TO TELL ME HOW MANY
CHILDREN WE'RE SERVICING.
BECAUSE I THINK THE GAP IS
GROWING LARGER WHEN THE
WAITING LISTS THAT WE'VE
BEEN ON THROUGH OUT OUR
ELEVEN YEARS, OR FIVE TO TEN
YEARS FOR SOME OF THE
SERVICES YOU'VE BEEN
MENTIONING, MY CHILD COULD
BE DEAD BY THE TIME HE GETS
SPEECH THERAPY.

Bart says WELL, WE DO -- I WILL SAY
THAT ONE OF THE INITIATIVES,
BECAUSE AS I SAID AT THE
OUTSET, WE REALIZE THAT
PARENTS FIND THEMSELVES
ALMOST IN A MAZE AND BEYOND
THEIR OWN OUT THERE TO TRY
TO FIND WHAT SERVICES ARE
AVAILABLE IN THEIR
COMMUNITIES, WE STARTED A
PROGRAMME CALLED MAKING
SERVICES WORK FOR PEOPLE.
AND THE INTENTION OF THE
PROGRAMME IS TO HAVE ONE
SORT OF CLEARING HOUSEHOUSE.
ONE AGENCY IN EVERY REGION
OF THE PROVINCE WHICH WILL
KNOW ALL OF THE DIFFERENT
SERVICES THAT ARE AVAILABLE
IN A COMMUNITY, AND WHEN
PARENTS FIND THEMSELVES THE
PARENT OF A CHILD
DEVELOPMENTAL DISABILITY
THEY CAN GO THEMSELVES TO
THAT AGENCY INSTEAD OF
FINDING THEMSELVES GOING
THROUGH THE MAZE OF THIS
DIFFERENT IS EVERS THEY CAN
GO TO THIS ONE SINGLE POINT
OF ACCESS AND THAT'S A
PROCESS THAT WE'VE BEEN
WORKING ON FOR THE PAST
COUPLE OF YEARS IN SOME
AREAS OF THE PROVINCE, THOSE
MAKING SERVICES WORK FOR
PEOPLE AGENCIES ARE ALREADY
UP AND RUNNING.
IN OTHER AREAS THEY AREN'T.
IN DEALING WITH THOSE
COMMUNITY AGENCIES, NOT ONLY
THOSE NEW ONES, BUT THE
EXISTING ONES, WE HAVE A
GOOD IDEA ABOUT THE AMOUNT
OF PEOPLE WHO ACCESS OUR
SERVICES.
I THINK SPECIAL SERVICES AT
HOME, THERE'S ABOUT 15,000,
AND SOME OF OUR OTHER
PROGRAMMES, THE NUMBERS ARE
SIMILAR.
16,000 PEOPLE ACCESS OTHER
PROGRAMMES.
THERE COULD BE DUPLICATES,
OF COURSE IN EACH OF THOSE.
IT WOULD BE IMPOSSIBLE FOR
US, ACTUALLY TO GO OUT AND
TELL YOU EXACTLY HOW MANY
KIDS IN THE PROVINCE OF
ONTARIO HAVE A DEVELOPMENTAL
DISABILITY.
I MET -- WHEN I WAS DOING
TOURING, AND THE MINISTER
TELLS A STORY ABOUT A
75-YEAR-OLD MOTHER OF A
CHILD IN HIS 50s, AND HE
SAID “YOU KNOW, I DON'T
ACCESS ANY SERVICES FOR MY
SON.
I NEVER HAVE.
I JUST NEED TO KNOW THAT
WHEN I'M GONE SOMEONE WILL
BE ABLE TO TAKE CARE OF MY
SON.”
AND SO THERE'S SOMEONE WHO
FOR 50 YEARS NEVER ACCESSED
GOVERNMENT SERVICES
WHATSOEVER FOR A SON WITH A
DEVELOPMENTAL DISABILITY.

Karen says BART, LAUGHLIN
CAMPBELL HAS A COMMENT.
GO AHEAD.

Laughlin says FIRST
OF ALL, I SHOULD SAY THAT MY
DISCUSSIONS WITH -- I'VE HAD
DISCUSSIONS WITH THE
MINISTER'S CHIEF OF STAFF
AND THEY'VE BEEN VERY
PRODUCTIVE AND I THINK SOME
CHANGES ARE GOING TO HAPPEN.
BUT I WANT TO CLARIFY SOME
THINGS.
IF I COULD PROPOSE A
DEFINITION OF SPECIAL NEEDS
CHILDREN IT WOULD BE
CHILDREN WHOSE NEEDS ARE NOT
MET UNDER THE NORMAL FUNDING
FORMULA FOR THESE AGENCIES.
IN OTHER WORDS THEY GET A
PRO RATA SHARE OF THE
AVAILABLE FUNDING FOR THESE
KINDS OF PROGRAMMES.
THEIR NEEDS ARE MORE SEAR
GRUS THAN THAT.
AND THAT'S WHAT SPECIAL
NEEDS AGREEMENTS WERE
INTENDED TO ADDRESS IN THE
CHILD AND FAMILY SERVICES
ACT.
AND THERE'S BEEN NO
REPLACEMENT FOR THAT.
IT'S STILL ON THE BOOKS.
IT'S STILL VALID
LEGISLATION, AND THERE'S
SOME QUESTION AS TO THE
LEGALITY OF IGNORING IT.
MORE THAN A QUESTION.
BUT THAT HASN'T BEEN
REPLACED.
SO THE DEFINITION I WOULD
PROPOSE FOR SPECIAL NEEDS
CHILDREN ARE CHILDREN WHO
WILL NOT BE SERVED BY
GETTING ON A WAITING LIST
FOR THESE COMMUNITY
AGENCIES.
THEIR NEEDS ARE MORE
COMPREHENSIVE AND DEMANDING.
THEY CAN'T GET A PRO RATA
SHARE OF THE 15,000 DOLLARS PER
FAMILY PER YEAR SOME OF
THESE AGENCIES ARE
AUTHORIZED TO GIVE AND
THERE'S NO PROTOCOL,
ALTHOUGH I UNDERSTAND ONE'S
BEING SET UP, THERE'S NO
PROTOCOL FOR SAYING THAT'S
NICE BUT THIS FAMILY NEEDS
170,000 DOLLARS PER YEAR.
AND THE SPECIAL NEEDS
AGREEMENT WAS A DIRECT
PIPELINE TO THE GOVERNMENT
TO GET THAT KIND OF --

Karen says TO ASSESS THAT
INDIVIDUAL FAMILY.

Laughlin says AND THAT'S NOT
AVAILABLE.
AND I'M SURE THERE'S GOING
TO BE A FUNDING ANNOUNCE.
SOME OF THE OTHER FUNDING,
THAT'S GREAT THAT THE
FUNDING IS BEING SENT OUT TO
THE COMMUNITIES, AND THERE
ARE NOT MANY CHILDREN WHO
NEED TO BE PLACED IN GROUP
HOMES.
I'M CONCERNED THAT THAT
DOESN'T MEAN THAT THERE
SHOULDN'T BE ANY PROVISION
FOR CHILDREN WHO ARE PLACED
IN GROUP HOMES.

Karen says WELL BART IN
TERMS OF FUNDING, BECAUSE
YOU'VE SAID THIS, AND SO HAS
THE MINISTER, THERE HASN'T
BEEN A DECREASE IN THE
AMOUNT OF MONEY BEING SPENT
ON THIS SO WITH THE SPECIAL
NEEDS AGREEMENT NO LONGER,
AND THE FUNDING IT SELF FOR
THAT IS GONE, ARE YOU SAYING
THAT THE MONEY IS NOW BEING
SPENT ON WHAT, STREAMLINING
THE SYSTEM AND SERVING MORE
IN THE COMMUNITY?

Bart says YEAH, THE SPECIAL NEEDS
AGREEMENTS THAT HAVE BEEN
SET UP THROUGH CHILDREN'S
AID SOCIETIES, THE INTENTION,
OF COURSE, IS TO HAVE PEOPLE
ACCESS THE SERVICES THROUGH
THE SECTOR RESPONSIBLE FOR
DELIVERING THOSE SERVICES.
ULTIMATELY THE MAKING
SERVICES WORK FOR PEOPLE
PROGRAMME, THAT'S THE AREA,
AND IT'S BEEN MENTIONED,
WHERE YOU GET TOGETHER WITH
A CASE MANAGER AND SOME
PROFESSIONALS IN THE FIELD
AND DETERMINE WHAT SERVICES
ARE NEEDED, AND THEN MAKING
SERVICES WORK FOR PEOPLE
ORGANIZATION IN A COMMUNITY
HAS AN INVENTORY OF ALL THE
AVAILABLE SERVICES, THEY
WORK WITH THE PARENTS AND
THE PROVIDERS TO COME UP
WITH SERVICES.
WE'RE TRYING TO GET AWAY
FROM THE CHILDREN'S AID
SOCIETY BEING INVOLVED,
BECAUSE THE CHILDREN'S AID
SOCIETIES ARE SET UP
STRICTLY TO PROTECT CHILDREN
IN DANGER.
AND SO WE ARE TRYING TO GET
A BIT AWAY FROM THAT
RELATIONSHIP, NOT REDUCING
THE MONEY, BUT MAKING SURE
THAT PEOPLE, WHEN THEY WENT
TO ACCESS SERVICES FOR
CHILDREN'S DEVELOPMENTAL
DISABILITIES, THAT THEY DID
IT THROUGH THAT SECTOR.
WE ADMIT THAT THERE'S BEEN A
LARGE GAP IN THE PAST FOR
PARENTS WHO ARE TRYING TO --
WHO ARE FINDING THEMSELVES
IN THIS SYSTEM, AND ANY KIND
OF COORDINATED FASHION,
GETTING ASSISTANCE KNOWING
WHAT SERVICES ARE AVAILABLE
AND GETTING THOSE SERVICES.

Karen says AND THE BUZZ WORD
IS COORDINATION, BART THANK
YOU VERY MUCH FOR YOUR TIME.
WE APPRECIATE YOUR
PERSPECTIVE.
BART MAEVES THE ASSISTANT
FOR THE MINISTER IN CHAMP OF
COMMUNITY AND SOCIAL SERVICE,
JOHN BAIRD.
BART WAS TALKING ABOUT THOSE
GAPS.
IS IT AT ALL POSSIBLE THAT
IN THE COMING YEARS, AS THEY
GET THIS NEW SYSTEM ONLINE
THAT THERE'S GOING TO BE
PEOPLE WHO FALL THROUGH THE
CRACKS, BUT IF THE GREATER
GOOD IS TO STREAM LINE AND
KEEP THE KIDS IN THE HOME
AND THE COMMUNITY, IS THAT
ENCOURAGING TO YOU TO HEAR?

Anne says UM, I'M
ENCOURAGED THAT PEOPLE ARE
LISTENING.
I'M ENCOURAGED THAT THERE'S
BEEN -- THAT THE MEDIA'S
GIVEN PRO FIVE.
I THINK IT WOULD HAVE BEEN
NICE THAT THEY LISTENED
DIRECTLY FROM THE PEOPLE
REQUESTING THE SERVICES
PREVIOUSLY.
BUT SEEING AS WHAT'S
HAPPENED IN THE RECENT MEDIA,
I THINK THERE'S SOME FOCUS
ON THE ISSUE, WHICH IS
HEALTHY.
THERE'S A DESIRE.
BUT I THINK THEY NEED TO
WORK WITH PARENTS AND PEOPLE
THAT UNDERSTAND SO THAT THEY
CAN RE-SHAPE.
AND I THINK THAT WHILE
ENCOURAGED, I'M CAUTIOUS,
BECAUSE I'M GOING THROUGH IT
YET ONCE AGAIN RIGHT NOW.
SO, YOU KNOW, IT'S ALL GREAT
AND DONE, BUT THE MECHANISMS
AREN'T THERE AND THE GAP IS
SO LARGE, AND I CAN ONLY
PRESUME IT'S BECOMING LARGER,
BECAUSE I'VE BEEN IN THE
SYSTEM ELEVEN YEARS, SO
FIRSTHAND EXPERIENCE, SEEING
AND HEARING FROM PEOPLE THAT
WORK IN THESE POSITIONS THAT
IT'S SO -- IT'S BECOMING SO
DIFFICULT.
AND I MEAN, SO CHALLENGING
TO WORK OUTSIDE THE BOX.

Karen says IT MAKES YOU WARY
AND YOU'VE GOT YOUR THICK
SKIN.
YOU'VE DEVELOPED IT FOR OVER
A DECADE.
I WANT TO BRING LISA IN
CALLING FROM SUDBURY.
HI LISA?

Lisa says HI.
I JUST WANTED TO MAKE A
COMMENT TO WHAT YOUR
GENTLEMEN ON THE SHOW THERE
HAS SAID.
I MISSED HIS NAME.

Karen says THE GOVERNMENT
SPOKESPERSON?

Lisa says NO.

Karen says OH, LAUGHLIN,
ANNE'S LAWYER.

Lisa says YES, I WANTED TO
COMMENT THAT SOMETIMES THESE
SERVICES SAY TO FAMILIES,
WELL YOU KNOW, WE CAN OFFER
A FOSTER HOME OR WE CAN, YOU
KNOW, PUT THE CHILD HERE.
LIKE, IT REALLY, IT IS KIND
OF A SLAP IN THE FACE FOR US
FAMILIES TO DEAL WITH IT,
IT'S NOT REALLY WHAT WE'RE
LOOKING FOR, IS FOR SOMEONE
ELSE TO TRY AND LOOK AFTER
OUR CHILDREN.
IT WAS JUST HELP SO WEEK DO
IT.

Karen says SOUND LIKE ANNE
HAD THAT SAME REACTION THAT
THAT WAS JUST A COMPLETE
INSULT AS A SUGGESTION.
WHAT IS YOUR EXPERIENCE BEEN
THEN WITH THE GOFT?

Lisa says I HAD A SEVERELY
DISABLED BOY AND HE PASSED
AWAY WHEN HE WAS FOUR, AND
THAT WAS NINE YEARS AGO.
AND I ALMOST SEE MYSELF IN
HER, SITTING THERE, YOU KNOW,
JUST GOING THROUGH THE SAME
THING.
IT'S VERY FRUSTRATING.
I REALLY AM QUITE
DISAPPOINTED THAT THINGS
HAVEN'T CHANGED IN THE
NUMBER OF YEARS THAT WE'VE
HAD TO DEAL WITH THIS
SYSTEM.
I KIND OF THOUGHT THERE
WOULD HAVE BEEN SOME
CHANGES.
I WOULD LIKE TO SAY TO ALL
THE FAMILIES, ESPECIALLY
ANNE THERE ON TV TODAY THAT
IT'S PEOPLE LIKE THAT, THAT
STAND UP AND SPEAK OUT, AND
IT MAKES IT BETTER FOR ALL
OF US THAT'S DEALING WITH
IT.
THAT'S GREAT.

Karen says LISA, WE
APPRECIATE YOUR CALL.

Lisa says THANK YOU.

Karen says THANKS FOR SHARING
YOUR STORY WITH US.

Anne says THANK YOU.

Karen says WHEN YOU HEAR
STORIES LIKE THAT OTHERS
THAT ARE GOING THROUGH IT,
IT'S AMAZING THAT SO MANY OF
YOU HAVE STRUGGLED FOR SO
LONG, BUT WHAT HAS BEEN SAID,
ANNE AND LAUGH LIMD N WITH
THE FUNDING ISSUE AND SOME
OF THE HARD CORE REALITY OF
TAXPAYERS' PERSPECTIVE, AND
IT'S IMPORTANT THIS
DISCUSSION THAT WE'RE
TERRIBLY SORRY, IT MUST BE
VERY DIFFICULT.
WE WANT TO HELP.
BUT WHEN IT COMES DOWN TO
OPENING UP THE WALLET AND
LETTING FAMILIES LIKE YOU
AND LISA WHEN SHE NEEDED IT
TO HAVE ALL THE MONEY YOU
NEED TO CARE FOR YOUR
CHILDREN, WE'RE JUST NOT
GOING TO GO THAT FAR.
AND THIS IS THE TAXPAYERS'
PERSPECTIVE.
SO THE GOVERNMENT HAS SAID
THAT THEY DON'T FEEL AN
OVERWHELMING PRESSURE.
CERTAINLY THE NEED TO HELP
SHOULD BE THERE, BUT THE
PUBLIC ISN'T KNOCKING DOWN
THE DOOR SAYING “GIVE THEM
ANYTHING THEY NEED.”
THEY FEEL BADLY, BUT YOU
SEE?
THIS IS, THIS IS THE HARD
CORE REALITY OF FUNDING.
WHICH IS CENTRAL TO THIS
STORY.

Laughlin says I'M
NOT SO SURE ABOUT THAT.
I MEAN, MY ROLE IS NOT TO BE
POLITICAL, BUT WE'VE HAD AN
OVERWHELMING OUTPOURING OF
PUBLIC SUPPORT, INCLUDING A
NUMBER OF DONATIONS RECEIVED
TO HELP FAMILIES IN THE
ROSATTI AND LAIR KID'S
POSITION.
AND THOSE PEOPLE ARE
OBVIOUSLY PEOPLE WHO ARE
WILLING TO PAY THEIR OWN
MONEY FOR THIS.
AND I THINK THAT THE SYSTEM
WOULD -- I'M GOING TO MAKE
ONE POLITICAL COMMENT, WHICH
IS IF I HAD 20 MILLION DOLLARS TO
SPEND I WOULD GIVE IT TO
SPECIAL NEEDS CHILDREN AS
OPPOSED TO DOING URINE
TESTING OF WELFARE BENEFITS
REACCEPT YENTS AND THAT IS
WITHIN THE SAME MINISTRY.
HOW THEY ALLOCATE THEIR
FUNDING.

Karen says IT'S ABOUT
PRIORITIES.

Laughlin says IT'S ABOUT PRIORITIES AS A
SOCIETY.
AND I'D ALSO -- I MEAN TO
CLARIFY, I WOULD LIKE TO,
LIKE TO HAVE SAID THIS TO
MISTER MAEVES BUT TWO YEARS OF
COMPLETE NON-FUNDING OF
THESE KINDS OF ISSUES ISN'T
A GAP.
AND THERE SHOULD BE A BETTER
WAY OF RESOLVING THESE
CONCERNS THAN HAVING TO
BRING A LAWSUIT IN A WAY
THESE FAMILIES ARE FORTUNATE,
BECAUSE I THINK THAT THE
EXISTENCE OF THE SECTIONS IN
THE C.F.S.A. GIVES HEM THEM
A LOOPHOLE AND STRONG LEGAL
ARGUMENT WHEN THEY GOT TO
COURT.
IF NOT, THEY MIGHT HAVE GOT
THE RESULTS.
I THINK THE ART TIMPL CASE,
THE 60 MILLION DOLLARS, I THINK IT
WAS PART OF THE SETTLEMENT
OF A CLASS ACTION LAWSUIT,
ACTUALLY.
SO OBVIOUSLY THIS KIND OF
ACTION AND ACTIVISM ON THE
PARTS OF THE FAMILIES WHO
ARE THIS COURAGEOUS IS
EFFECTIVE.

Karen says AND THERE'S NO
DOUBT ABOUT THE LAST WEEK,
WITH YOUR SISTERRY, ANNE,
AND HEARING FROM THE FAMILY
IN BRAMPTON, THE ROSATTI'S
AND EVEN HEARING FROM LISA,
TOO, IT'S TOUCHED A CARD.
MANY OF US WANT TO HELP AND
DO ALL WE CAN BUT WHERE THIS
HAS MANIFESTED IT SELF IS IN
THE SCHOOLS FOR THE FUNDING
FOR SPECIAL NEEDS WHERE YOU
GET PARENTS OF REGULAR
STUDENTS VERSUS PARENTS OF
SPECIAL NEEDS.
SO AS MUCH AS IT MAY SOUND
AWFUL TO SAY, I THINK IT'S
PRUDENT IN THIS DISCUSSION
THAT WHEN IT COMES DOWN
TO -- IT CAN GET NASTY FOR
THE FIGHTING OVER FUNDING
WHEN IT COMES TO OUR SCHOOLS
AND SOCIAL SERVICES.

Anne says WELL, THIS
IS WHAT I'LL SAY TO THAT.
IN McLEAN'S LAST WEEK THEY
DID A POLL.
60 PERCENT OF ONTARIO PEOPLE SAY
DON'T GIVE US TAX CREDIT,
PUT IT BACK INTO EDUCATION,
GOOD HEALTHCARE AND SOCIAL
SERVICE.
SO I THINK YOU'RE WRONG.
JUDGING BY THE NUMBER OF
CALLS AND LETTERS AND PEOPLE
WITHIN THE MINISTRIES AND
PEOPLE WITHIN THE SCHOOLS, I
COULD HAVE A FULL-TIME
PERSON MANNING MY PHONES
RIGHT NOW.
PEOPLE ARE REALIZING THAT IF
WE HELP NOW, WE SAVE LATER.
DO WE WANT PEOPLE --
MISTER LATIMER'S GOING TO THE
SUPREME COURT.
I WON'T MAKE A COMMENT ON
WHAT HAPPENED WITH HIM AND
HIS CHILD, BUT THE COST TO
SOCIETY AND THE OTHER
CHILDREN, MY OTHER CHILD,
PEOPLE THAT CAN'T ENDURE,
COULD BE MUCH GREATER A COST
IN CARING FOR THEM IN THE
LONG-TERM THAN IT WOULD BE
IN HELPING CHILDREN.
AND AGAIN, MIGHT I ADD MY
CHILD IS LIKE FOREST GUMP
WITH -- IN A PERFECT WORLD
THESE CHILDREN CAN DO JOBS
AND PAY TAXES.
BUT IF THEY DON'T GET THE
EARLY INTERVENTION AND THE
FAMILIES DON'T GET THAT
LITTLE BIT OF ASSISTANCE TO
KEEP THEM GOING THROUGH, THE
COST WILL BE MUCH GREATER
PHYSICALLY, EMOTIONALLY AND
DOLLAR-WISE.

Karen says WE HAVE STAND
WRARONKO ON THE LINE WITH US
NOW WITH THE FAMILY ALLIANCE
OF ONTARIO.
IT'S A SUPPORT GROUP AND
WE'RE GOING TO GET HIS
PERSPECTIVE.
HI STAN.

The caption changes to “Voice of: Stan Woronko. Family Alliance of Ontario.”

Stan says HI.

Karen says WHAT ARE YOUR
MEMBERS TELLING YOU, THE
PEOPLE YOU DEAL WITH
REGULARLY?
WHAT ARE THEY GOING THROUGH
IN TERMS OF THEIR FIGHT FOR
FUNDING AND SUPPORT?

Stan says WELL, WE GOT VERY
MANY SITUATIONS SIMILAR TO
WHAT MISTER LARCADE IS
DESCRIBING.
THERE'S A SERIOUS LACK OF
FUNDING IN THIS PROVINCE AND
MANY FAMILIES IN VERY
DIFFICULT CIRCUMSTANCES.
MOREOVER, MANY PEOPLE ARE
VERY UPSET BECAUSE THERE'S
VERY LITTLE CHOICE.
PEOPLE ARE EXPECTED NOT ONLY
TO GIVE UP CUSTODY IN
CERTAIN CASES, BUT IN CASES
EVEN WHERE THEY'RE NOT
EXPECTED TO GIVE UP CUSTODY,
THEY'RE EXPECTED TO GIVE UP
CONTROL.
THEY DON'T REALLY HAVE A
FULL CHOICE OF SERVICES.
THE MINISTRY DEFINES WHICH
SERVICES ARE AVAILABLE AND
WHERE YOU SHOULD GO, AND
OFTEN THESE SERVICES CAN BE
QUITE RESTRICTIVE.
FOR EXAMPLE, PEOPLE WHO ARE
GIVEN A GROUP HOME BED
HAVE -- DO NOT CHOOSE WHERE
THEY LIVE OR WITH WHOM THEY
LIVE.
AND THIS PERMEATES THE
SYSTEM WHERE PEOPLE HAVE TO
GIVE UP CONTROL IN ORDER TO
GET SUPPORT.
SO WE STAND FOR CREATIVE
OPTIONS BEING SUPPORTED AND
FUNDING BEING ATTACHED TO
INDIVIDUALS.
FOR EXAMPLE, ALEXANDER
SHOULD HAVE HIS BUDGET OF
WHATEVER IT COSTS TO SUPPORT
HIS NEEDS AND WITH HIS
FAMILY, WITH HIS MOTHER,
THEY COULD CHOOSE WHERE IN A
PROVINCE, FROM WHICH SERVICE
PROVIDER, TO OBTAIN
SERVICES.
IT SHOULD NOT BE THE CHOICE
OF GOVERNMENT BUREAUCRATS.
SO THAT'S WHAT WE SUPPORT,
CHOICES.
AND MANY FAMILY, MORE AND
MORE ARE REQUESTING --

Karen says SO STAN, RIGHT NOW, IF I
UNDERSTAND YOU, LET'S SAY
SOMETHING -- IN TERMS OF
PLACING A CHILD INTO A GROUP
HOME, ARE YOU TELLING ME
IT'S NOT TAKEN INTO ACCOUNT
WHERE THE PARENTS LIVE SO
THAT THEY COULD SAY OKAY,
THEY LIVE IN GUELPH, LET'S
MAKE SURE WE GET THEM INTO
THE CLOSEST ONE.
IS THAT NOT BEING DONE?

Stan says WELL, THERE'S STILL QUITE
A FEW SITUATIONS WHERE
PARENTS LIVE HUNDREDS OF
MILES AWAY FROM THEIR
CHILDREN.

Anne says MOST.

Stan says AND THAT'S JUST BECAUSE
OF THE RESTRICTIONS ON WHERE
YOU CAN SPEND THE MONEY.
THE MONEY'S ALLOCATED
ACTUALLY TO AGENCIES RATHER
THAN TO PEOPLE.
WE FEEL THE MONEY SHOULD BE
ATTACHED TO THE PEOPLE WHO
NEED THE SERVICES, AND THEN
THEY COULD CHOOSE WHERE THEY
LIVE.

Karen says STAN, THAT'S AN
EXCELLENT POINT.
THANKS FOR SUMMING IT UP
LIKE THAT FOR US.
THANKS FOR JOINING US.

Stan says THANK YOU.

Karen says STAN WORONKO,
FAMILY ALLIANCE OF CANADA, A
SUPPORT GROUP FOR DEALING
WITH THE SPECIAL NEEDS OF
CHILDREN.
WE'RE GETTING CLOSE TO THE
END OF OUR DISCUSSION HERE
AND OF COURSE THIS IS SUCH A
COMPLEX ISSUE, BUT I THINK
IT'S IMPORTANT TO FOCUS NOW
ON THE LONG-TERM SOLUTIONS.
AND LAUGHLIN WHAT DO YOU SEE
IN TERMS OF THE FUTURE, EVEN
JUST FIVE YEARS DOWN THE
ROAD?
ARE YOU ENCOURAGED BY
ANYTHING THAT YOU'RE SEEING
THIS TERMS OF WHAT THE
GOVERNMENT IS DOING?

Laughlin says I THINK FROM WHAT I'VE
SEEN ON PAPER AS FAR AS
POLICY, THE GOVERNMENT HAD
AND PROBABLY STILL HAS A
GOOD IDEA.
AND IF THE FUNDING IS
ATTACHED -- AND I THINK IT'S
BEING ACCELERATED NOW, THERE
ARE SOME PROBLEMS WITH THE
COMMUNITY MODEL BECAUSE IT
DOESN'T FIT ALL KINDS OF
CASES.
BUT IF -- AS I SAID, IF ALL
CASES ARE RESOLVED IN THE
SAME WAY AS MISSUS LARCADE'S
CASE, WE'RE WELL ON OUR WAY.
THAT DOESN'T FIX THE
PROBLEMS, THOUGH, OF THE
SERVICES NOT BEING AVAILABLE
OVER THE PROVINCE EQUALLY.
IT'S SOMETHING THE
GOVERNMENT'S GOING TO HAVE
TO LOOK AT, BECAUSE IT'S
PRETTY CLEAR THAT LEGALLY,
IF I CAN ACCESS SERVICES IN
TORONTO FOR MY CHILD, AND
ANNE LARCADE CANNOT ACCESS
THOSE SERVICES IN HUNTSVILLE
FOR HER CHILD, THAT'S
UNCONSTITUTIONAL.
THAT'S BEEN DECIDED.
IT'S PRETTY MUCH A MOOT
POINT.
AND WHAT'S HAPPENED, MY
UNDERSTANDING, IS THE
GOVERNMENT HAS CEASED
FUNDING, FUNDING THE KINDS
OF GROUP HOMES THAT
ALEXANDER IS IN AND LUCA
ROSATTI IS IN AND JULIE
CAUDE SLMD IN.
AND THOSE ARE PRIVATE GROUP
HOMES AND A PRIVATE GROUP
HOME OWNER TOLD ME THE
ECONOMIC CLIMATE IS NOT
THERE TO DO SOMETHING IN
HUNTSVILLE.

Karen says THEY'RE PULLING
THE FUNDING FROM THOSE
INSTITUTIONS TO GO INTO THE
COMMUNITY.
THIS IS THE WHOLE MANTRA OF
THE TORY GOVERNMENT ABOUT IN
COMMUNITY CARE AND MOVING TO
HOMECARE, WHICH MANY HAVE
APPLAUDED.

Laughlin says WELL LET'S TALK ABOUT
WHAT KIND OF AN INSTITUTION
IT IS.
WHAT WE'RE TALKING ABOUT
THIS THESE CASES IS
BASICALLY RESPITE CARE, BUT
LONGER-TERM.
LUCA ROSATTI COMES HOME
EVERY WEEKEND ALL WEEKEND
I'M SURE ALEXANDER WOULD IF
HE WASN'T A FOUR HOUR
ONE-WAY TRIP AWAY FROM
ANNE'S HOME.
SO WE'RE TALKING ABOUT
RESPITE CARE AND A CHANCE TO
GET FULL-TIME CARE.
STEWART HOME, WHERE LUCA
ROSATTI, IT'S A FIVE BEDROOM
FACILITY, LOOKS EXACTLY LIKE
YOUR OR MY HOME, ONLY IT'S
BIGGER.
IT IS NOT AN INSTITUTION.
IT'S NOT A HOSPITAL WARD.
THEY HAVE FULL-TIME, SAME
PEOPLE LOOKING AFTER THEM
AND WORKING WITH THEM.
IT'S NOT AN INSTITUTION.
IT'S NOT KIND OF GETTING
YOUR CHILDREN OUT THERE.

Karen says WITH THE BARS AND
THE WAY WE ALL TRADITIONALLY
THINK OF --

Laughlin says
EXACTLY.

Anne says THEY TAKE
THEM OUT BOWLING, IT'S
BEAUTIFUL, AND THEY ROTATE.
THEY DON'T GET TIRED.

Laughlin says IT'S A REAL POSITIVE
ATMOSPHERE AND THE ONLY
OPTION TO TAKING A CHILD IN
THE HOME -- ANNE WOULD
PROBABLY HAVE TO LEAVE HER
JOB.
AND I KNOW --

Karen says LET ME GO TO ANNE
ON THAT NOTE THEN IN TERMS
OF ALEXANDER AND WHAT YOU
LOOK AT IN TERMS OF THE
FUTURE.
ARE YOU BITTER THAT YOU'VE
HAD TO COME OUT AND BE -- TO
AIR YOUR WHOLE STORY AND
YOU'VE ALSO HAD TO TALK SO
MUCH AND HIGHLIGHT SO MUCH
ABOUT AL ZAND DER'S PROBLEMS
AS OPPOSED TO OBVIOUSLY YOUR
INCREDIBLE LOVE FOR HIM.

Anne says AND PRIDE.
I'M VERY PROUD OF WHAT
ALEXANDER HAS ACCOMPLISHED.
I'M A VERY PRIVATE PERSON SO
IT'S BEEN VERY DIFFICULT TO
COME OUT.
I'VE BUILT MY CAREER IN
ORDER TO SUPPORT MY
CHILDRENS' NEEDS AND LOOK AT
THEIR EDUCATION SO, MY
CAREER IS VERY IMPORTANT TO
ME.
SO IT'S BEEN VERY DIFFICULT.
EVERYONE ASKS ME “DO YOU
FEEL ZOOD YOU'VE WON.”
AND I SAID, “YOU KNOW, I'VE
WON NOTHING.
I FOUGHT FOR SOMETHING THAT
SHOULD HAVE BEEN RIGHTFULLY
MINE, AND I COULD BETTER USE
MY TIME ADVOCATING FOR OTHER
ISSUES AROUND ALEXANDER'S
AND OTHERS' HEALTH AND
WELFARE.”
SO I DON'T THINK WE'VE --
YOU KNOW, THERE'S A LONG WAY
TO GO, AND I HAVEN'T WON
ANYTHING, BUT I DO HAVE A
WONDERFUL SON, AND I
ENCOURAGE ANYONE TO GO TO A
GROUP HOME OR GET IN TOUCH
WITH PEOPLE THAT HAVE
SPECIAL NEEDS CHILDREN AND
HELP THEM AND LEARN.
BECAUSE IF THEY LEARN AND
ARE EDUCATED, LIKE FOREST
GUMP, THERE'S A LOT OF GOOD
IN THE WORLD.

Karen says ANNE, LAUGHLIN,
THANK YOU VERY MUCH FOR
COMING IN WE APPRECIATE YOUR
TIME.
ANNE LARCADE HAS FOUGHT A
VERY PUBLIC BATTLE TO RETAIN
CUSTODY OF HER SON,
ALEXANDER, LAUGHLIN CAMPBELL,
A LAWYER REPRESENTING ANNE
AND OTHER TAMLIES IN HER
SITUATION.
YOU CAN REACH HIM AT:

A caption reads “Binsky-Campbell. 905-828-2247.”

Karen says EARLIER WE HEARD FROM THE
FAMILY ALLIANCE OF ONTARIO.
THEIR PHONE NUMBER IS:

The caption changes to “Family Alliance of Ontario. 416-661-9611 extension 207. www.family-alliance.com.”

Karen says THAT’S IT FOR TODAY. I’M KAREN
HORSMAN. TUNE IN MONDAYS THROUGH
FRIDAYS FOR “MORE TO LIFE.”

Watch: Special Needs Kids