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, TorontoFounding 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

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]

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 affectedchildren. 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].

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

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.

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 4Repeated 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 3At 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.

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 itwas 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 – 170Schools and Education – 169CAS – 4812Treatment Centers – 618Physicians, Psychiatrists and Psychologists – 91Probation – 102Ministry of Children and Youth Services - 259Community Mental Health – 135Courts – 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

REFERENCES 1- The Stream of Consciousness. William James. Psychology, Chapter XI, 1892.

2- W.C. Sullivan, Stewart Scholar. A Note on the Influence of Maternal Inebriety on the Offspring. Journal of Mental Science. 1899. 3- Pattern Of Malformations in Offspring Of Chronic Alcoholic Mothers, Jones et.al. The Lancet: Saturday 9 June 1973. 4- The Effects of Drinking on Offspring; An Historical Survey of American British Literature. Rebecca Warner, Henry L. Rosett. The Journal of Alcohol Studies. 1975. 5- 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. 6- Incidence of Fetal Alcohol Syndrome and Prevalence of Alcohol - P.D.Sampson et.al., Teratology 56:317-326 [1997] 7- Mental Illness in Adults With Fetal Alcohol Syndrome or Fetal Alcohol Effects. Chris. Famy et.al., Am. J. Psychiatry 1998; 155: 552-554 8- Fetal Alcohol Syndrome: Implications For Correctional Service. F.J. Bolland et.al. Research Report, Research Branch, Correctional Service Canada. 1998. 9-. Comparison of Social Abilities of Children with FAS to Those Children with Similar IQ Scores and Normal Controls. Alcoholism; Thomas et al Clinical and Experimental Research, 22[2], 1998 10- Developing Clinical Practice Guidelines for Pharmacological Interventions With Alcohol - Affected Children., 1999. Kieran D. O’Malley, University of Washington Fetal Alcohol and Drug Unit. Randi Hagerman, University of Colorado, Health Sciences Centre, Children’s Hospital, Denver. 11- Diagnosing The Full Spectrum of Fetal Alcohol-Exposed Individuals: Introducing The 4-digit Diagnostic Code. Susan J. Astley and Sterling K. Clarren. Alcohol and Alcoholism. Vol. 35, No. 4, 2000. 12- Estimating the Prevalence of Fetal Alcohol Syndrome. P.A. May et.al., Alcohol, Research & Health., Vo. 25, No 3, 2001 13- An Introduction to the Problem of Alcohol Related Birth Defects. www.med.unc.edu/alcohol/ed/fas/slides Fetal Toxicology Division, Bowles Centre for Alcohol Studies, University of North Carolina. 14- Teratogenic Effects of Alcohol on Brain and Behavior. Sarah N. Mattson et.al. Alcohol Research and Health. Vol 25 No 3, 2001 15- Fetal Alcohol Exposure and Attention: Moving beyond ADHD. Coles et.al., Alcohol Research and Health, Vol, 25. No 3, 2001.

16- Comparison of the Adaptive Functioning of Children Prenatally Exposed to Alcohol to a Nonexposed Clinical Sample. Whaley et al. 25[7], July 2001. 17- Prenatal alcohol exposure and childhood behavior at age 6 to 7 years: 1, dose -response effect, B.Sood et.al., Pediatrics, 2001 Aug;108[2]; E34. 18- Clinical Implications of a Link Between Fetal Alcohol Spectrum Disorder and Attention-Deficit Hyperactivity Disorder. Kieran D O’Mally, Jo Nanson, Can. J Psychiatry, Vol.47, No4, May 2002. 19- Fetal alcohol spectrum disorder and ADHD: diagnostic implications and therapeutic consequences, Kieran O’Mally and Linda Storoz. Expert Review. Neurotherapeutics 3[4], 477-489 [2003] 20- Youth with Comorbid Disorders, Kieran D. O’Mally, The Handbook of Child and Adolescent Systems of Care, Chapter Thirteen, 2003 21- Fetal Alcohol Spectrum Disorder [FASD]: A Need for Closer Examination by the Criminal Justice System. Timothy E. Moore, Melvyn Green. Criminal Reports, Vol 19 Part 1, July 2004 22- FASD 4-Digit Diagnostic Code [2004], FAS Diagnostic and Prevention Network, University of Washington, Seattle, U.S.A. 23 Fetal Alcohol Spectrum Disorder [ FASD ], Public Health Agency of Canada, Cat.No. H124-4/2004, ISBN 0-662-68619-5, Publication No. 420024- Report on Prenatal Exposure to Alcohol. Professor Peter Hepper, Belfast, N. Ireland, 1998. Maternal alcohol consumption during pregnancy may delay the development of spontaneous fetal startle behavior. Peter G. Hepper et.a., Physiology and Behavior, 83 [2005], 711-714. 25- Fetal Alcohol Spectrum Disorder Canadian Guidlines for Diagnosis. Albert E. Chudley et. a.l., C.M.A.J.- March 1st., 2005.26- Binge Drinking During Pregnancy as a Predictor of Psychiatric Disorders on the Sructured Clinical Interview for DSM-IV in Yourng Adult Offspring., Helen M. Barr et.a.l., American Journal of Psychiatry, 2006: 161: 1061- 1065

Attached documents in support of the submission to the Ontario Select Committee on Developmental 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 of Fetal Alcohol Spectrum Disorder in Canadian Criminal Law From Investigation to SentencingKent Roach* and Andrea Bailey**