Submission to the Ontario Select Committee on developmental services. Jan. 2014: relating to the needs of those with FASD and the families who support them.

1. SUBMISSION TO THE ONTARIO SELECT COMMITTEE ON DEVELOPMENTAL
SERVICES.- January, 2014
Madam Chair and members of the Committee.
I thank you for the opportunity to make this submission.
I understand you have a copy of my cv and work experience with FASD.
My wife and I have a son, now 37 who was diagnosed FASD in his early twenties.
We are actively involved in raising his children and supporting him.
The following is a synopsis of my involvement with FASD -
Training in the diagnosis of FASD, 2002 - September - FAS DPN
(Fetal Alcohol Spectrum Diagnostic Prevention Network) Multidisciplinary Clinical
Training, University of Washington, Seattle, U.S.A.
Member FASWorld, Toronto
Founding Member of, and Medical FASD Consultant to, FASD Hamilton Support Group-
a registered society dedicated to helping those who have FASD and the families who
support them.
[ no longer involved ]
Founding member of the St. Michael’s Hospital FASD Support Group Consultant to the
FASD Diagnostic Clinic, St. Michael’s Hospital, Toronto.
Professional Advisor to FASAWARE UK. a registered organization, dedicated to the
education and increasing awareness of FASD, in the U.K.
Member of the FASD- Study Group of the Research Society on Alcoholism [ no longer
involved ]
Founding member of the FASD Ontario Stakeholders, now titled FASD ONE- FASD
Ontario Network of Expertise.
[ no longer involved ]
I have made presentations on FASD on numerous occasions in Ontario. Also in B.C.,
England, Wales and N. Ireland.
Recognized as an expert witness for FASD by the Superior Court of Justice of Ontario.
FASD referrals were from social agencies, justice system, diagnostic clinics, schools, as
well as self referrals.
My practice was confined to individuals who have fasd and the families who support
them.
I saw those with FASD and their families at the CAS offices in Burlington and Barrie,
Trellis Mental Health- Guelph and the Aboriginal Health Centres in Hamilton and
Brantford.
For diagnosis I obtained a detailed history and made clinical observations, over five - six
sessions.
I examine all documents, especially psychometric assessments. If there was a confirmed
history of prenatal alcohol exposure, with correct psychometric results and a clinical
history in keeping with the

2. diagnosis then I refered to one of the FASD diagnostic clinics in Toronto.
In the process of obtaining the history I explained the disabilities of FASD e.g. concrete
thinking and perseveration.
The most significant factor that helps those with fasd is the understanding of their
disabilities by their caregivers. Knowing about FASD is not the same as understanding it.
When necessary, for example when a history of prenatal exposure could not be
obtained, I wrote a detailed report with opinions and recommendations.
If the individual with fasd or their families wish I continued to see them to deal with
ongoing issues of education and the law etc.
With respect, in order to fulfill its mandate it is necessary for the Committee to
address the burden of FASD on the children, youths and adult who are afflicted, and
the families that support them.
The Ontario Government[s] is increasingly distancing itself from the rest of
Canada, and the world, in not recognizing FASD [Fetal Alcohol Spectrum
Disorder[, FAS [Fetal Alcohol Syndrome ], ARND [ Alcohol Related
Neurodevelopmental Disorder] and by not supporting –
the individuals who have this affliction, the families and professional that
support them, the [Inadequate number of] diagnostic clinics and those that carry
out research.
The accepted incidence of babies born with FASD is one in a hundred.
It is likely that this is an underestimation.
The cost in Canada for FAS was estimated at about $6.7 million for the year
2008-2009.
If FAS represents 10% of all those with FASD then the overall cost could be $67
million. Making such estimates are difficult, and results conservative. The hidden
costs have to be much greater, but difficult to determine, such as the
costs of those that remain undiagnosed and the costs to families that are not
covered by public agencies.
Prenatal alcohol exposure to the developing fetus results in varying degrees of
impaired brain function that are measured by [neuro ]psychological testing.
These neurodevelopmental disabilities are permanent and result in involvement
by the individual with all the government agencies that you are considering
today.
Each assessment is a unique profile of the intellectual abilities of the individual
and is essentially valid throughout their lifetime.
We have in Canada the Canadian Guidelines for the Diagnosis of FASD-
FAS/ARND which are the designations given to those with the
neurodevelopmental disabilities due to prenatal alcohol exposure.
These Guidelines include the set of psychological tests and the results required
to make the diagnosis of FASD [FAS/ARND]

3. It has been know since 1996 that if the diagnosis of FASD is made in early
childhood and the appropriate measures taken then the child will have less
issues with schooling, the law, addictions, work and social interactions.
The appropriate measures requires recognition and understanding of FASD by
all the agencies you are considering today.
In Ontario the [neuro]psychological assessments are difficult to obtain due to
poor funding and lack of appreciation of their importance. Consequently FASD is
undiagnosed, with often tragic consequences to the individual and great expense
to the Province.
FASD [FAS/ARND] is the only medical diagnosis that is denied in Ontario
because of lack of access to the required psychological assessments, and a
paucity of diagnostic facilities.
Since 1996 it has been apparent to those researching fasd that the I.Q. is
inadequate and misleading as tool for measuring the abilities of children who
have been exposed to alcohol prenatally. Yet to a varying extent Ontario’s public
agencies rely on the I.Q. as the measure of intellectual ability. This results in the
exclusion of many who need assistance, especially those with FASD.
The human brain is the most complex system known. The effect of prenatal
alcohol exposure on the developing brain is ubiquitous and variable within the
range of the I.Q. from extremely low to superior.
Yet even the intelligent, as measured by the I.Q., have chaotic lives with various
combinations of cognitive, information processing , memory and adaptive and
executive functioning disabilities.
Sadly, most of those with FASD, children and adults, are seen as selfish, willful,
defiant, and even evil, when in fact they are desperately doing their best to make
sense of their environment and the circumstances they find themselves in.
In addition their care givers are usually blamed for the behavior of their affected
children. This often results in loss of the child, and sometimes criminal charges
against the care giver- again with tragic consequences and hidden costs to the
Province.
94% of those diagnosed will receive other diagnoses from the DSM, often
multiple diagnoses. I have seen as many as six.
It is important that the role of the DSM5 is fully understood by our legislators.
The DSM, published by the American Psychiatric Association, is used throughout
Canada by psychiatrists, pediatricians and psychologists. It includes mental
health, developmental and behavioral diagnoses.: diagnoses that enable access
to government, public and private agencies for relief, awards and compensation.
The new DSM5, as in previous editions, does not include FASD [FAS/ARND].

4. This is one of the reasons why those with FASD and the families that support
them have been denied what is rightfully theirs.
The only way this gross deficiency can be rectified is for legislation to specifically
include FASD [FAS/ARND] as meeting the requirement for funding etc by all
government agencies that are involved.
The elementary and secondary educational needs of
children and youth –
All teaching staff should have training in FASD and be familiar with the
psychological profile of the individual. Funding for psychological assessments
should be a priority for all children with developmental disabilities.
Psychological Assessments from other sources, if adequate, should be used when
available.
The screening tools for FASD should be part of the training and the diagnosis
pursued when appropriate.
Behavioral issues need to be seen for what they are- a consequence of
neurodevelopmental disabilities, and not willful choices.
A big issues is multiple schools. FASD families are prone to move a lot. This
means the children will often attend numerous schools over short periods. In
addition those children diagnosed FASD in CAS care often have multiple foster
placements. This is due to lack of training and understand of FASD, and
compounds the problems of education.
Every effort should be made to keep the child in a stable school and home
environment for optimum results.
Diagnoses from the DSM5 should not exclude awareness, screening and
diagnosis of FASD. On the contrary such diagnoses should be a red flag for the
diagnosis of FASD.
The respite and support needs of families –
Respite is desperately needed for the natural, adoptive, and foster parents of
children with FASD. Yet it is so rarely provided. This results in divorce, failed
adoptions and multiple placements.
A common situation is grandparents raising children with FASD, often widows or
widowers. All seeking help from professionals and agencies that lack
understanding of their situation.
For respite to be successful it is imperative that the temporary caregiver
understand FASD and be familiar with the child’s needs, as indicated by his/hers

5. psychological assessments. If not, the child’s behavior will be aggravated on
return to the home – a not uncommon event, unfortunately.
Policy on FASD has to include appropriate respite on a scheduled basis.
It is my experience that frequent short periods are more effective than
infrequent longer periods. Whenever possible the alternate caregiver should be
the same person.
How government should most appropriately support these
needs and provide these opportunities.
1- Future legislation should include provisions for an overall comprehensive policy
on FASD that applies to all government ministries, departments and agencies.
2- The I.Q. be abandoned as a criteria for the provision of developmental services.
a] - a full [ neuro ]psychological assessment be recognized as the intellectual profile
of the individual, that can and should be used throughout the life of the individual
b]- means should be provided for the individual’s psychological [ assessment ]
profile to be used by all government ministries, departments and agencies- -
education, justice, ODSP, housing , respite etc., throughout the life of the individual:
so as to provide cooperative, comprehensive and continuous services, thereby
significantly reducing the virtual cost of the assessments; with appropriate
provisions for the maintenance of confidentiality.
3- The Committee’s present definition of Intellectual Disability
“An intellectual disability (also commonly referred to as a developmental disability
among other terms) is, simply stated, a disability that significantly affects one's
ability to learn and use information. It is a disability that is present during
childhood and continues throughout one's life.”
be extended to include the psychological assessments required and criteria, as in the
Canadian Guidelines for the Diagnosis of FASD [ FAS -ARND ]
4- Fetal Alcohol Syndrome [FAS], Alcohol Related Neurodevelopmental Disorder
[ARND ] and Fetal Alcohol Spectrum Disorder[s] [FASD] be specifically recognized
in any future legislation [ since they will fulfill the requirements as in 3 above ]
5- It should be mandatory for all public employees who provide services to those
with developmental [intellectual ] disabilities, and the families that support them, to
have training in FASD and to always refer to the psychological assessments of the
individuals in order to understand the needs of the individual.

6. Case Study
It is impossible to cover all the aspect of FASD in this report.
I have chosen the following true case that illustrates all the concerns in this
submission.
In doing so it is most important to understand that the tragic actions and
consequences related only occur in a small minority of cases of those afflicted
with FASD.
Male convicted of secondary murder at the age of 16, after consuming a large
amount of alcohol. Raised by his grandparents.
Ontario Ministries and agencies involved
-Provincial Police, Education, CAS, Physicians, Mental Health Services, Youth
Court, Ministry of Community Safety and Correctional Services-Probation,
Ministry of Children and Youth Services, Ontario Court of Justice, Youth Court
and the Superior Court of Justice.- Plus various stays at five treatment or
assessment centers.
History of involvement with the police from the age of 4
Repeated transgressions until finally being taken to court.
Repeated transgressions continued until the murder at age of 16.
All transgressions were in the company of peers.
The pattern of transgressions was one of increasing frequency and severity.
Transgressions were always easily detected – yet he never seemed to “learn” from
these experiences.
The boy himself described his actions as dumb and questioned why he acted in this
way- a question that was rarely asked by the professionals involved.
Interventions and treatments, in the absence of an FASD diagnosis, had no lasting
effect.
Repeated incarcerations and detentions, including five separate treatment facilities,
and a foster home.
Learning and behavioral problems were recorded in school from senior
kindergarten and persisted throughout subsequent grades.
Incomplete and interrupted schooling.
Difficulties with mathematics and English recorded in grade 3
At age 9 for the first time an IPRC Review was done and he was placed on the
waiting list for a Psychological Assessment.
Modified Classroom Assistance for Communication and Attention was designated at
age 10. Nevertheless his lack of progress was seen as a choice by him.

7. A Psychological Assessment was finally done at the age of 12, on the order of the
courts, not by the school, and an IEP [Individual Education Plan ] implemented.
Although the history and results of the Psychological Assessment should have raised
the probability of FASD it was not considered..
In spite of his now proven information processing and learning disabilities it
was reported that “ lack of finished product is the result of non compliance and not
his ability.
The boy was diagnosed with ADHD, Conduct Disorder from the DSM4
The following are the number of pages reviewed relating to the boy’s involvement
with the various government agencies- consisting of letters, reports, incident
reports, plans of care, consultations, case notes, discharge plans and summaries,
occurrence reports, case managements, reintegration plans, treatment plans and
treatments..
The amount of time and money represented here is inestimable
Police – 170
Schools and Education – 169
CAS – 4812
Treatment Centers – 618
Physicians, Psychiatrists and Psychologists – 91
Probation – 102
Ministry of Children and Youth Services - 259
Community Mental Health – 135
Courts – 82
.
It has been known since 1996 that if the diagnosis of FASD is made in early
childhood and the appropriate measures taken then the child will have less issues
with schooling, the law, addictions, work and social interactions.
Although suggested by the family FASD was never pursued or acted on by any of the
agencies involved.
The diagnosis was eventually made after his conviction.
Respectfully submitted, January, 2014
Barry Stanley MB. Ch.B. F.R.C.S.[C
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Attached documents in support of the submission to the Ontario
Select CommitteeonDevelopmental Services by Dr Barry Stanley
1- Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol
Syndrome [FAS] and Fetal Alcohol Effects [FAE]. Final Report, August 1996., Streissguth et.al.,
Fetal Alcohol and Drug Unit, University of Washington, Seattle, U.S.A.
2- Mental Illness in Adults With Fetal Alcohol Syndrome or Fetal Alcohol Effects. Chris. Famy
et.al., Am. J. Psychiatry 1998; 155: 552-554
2-Fetal Alcohol Spectrum Disorder Canadian Guidlines for Diagnosis. Albert E . Chudley et.
a.l., C.M.A.J.- March 1st., 2005.
3-FASD- Nomenclature – B.Stanley, April, 2012
4- The Relevance ofFetal Alcohol Spectrum Disorder in Canadian
Criminal Law From Investigationto Sentencing
Kent Roach* and Andrea Bailey**