Helping young adults with neurodevelopmental disabilities: IRCM ethics experts study the transition from paediatric to adult health care services

Helping young adults with neurodevelopmental disabilities: IRCM ethics experts study the transition from paediatric to adult health care services

By: CNW: A PR NEWSWIRE COMPANY, 3 Feb 2014

Accessed on: 3 Feb 2014

Commentary by: Krystal Glowatski

I am posting a second news blog this week.  I think it’s a timely piece to complement the interview on Regina Community Radio 91.3 FM CJTR, Listen Up program that aired live on Tuesday, February 4.  While Cheryl Charron and Karen Cooper of the Regina Community Clinic touched on a broad range of topics relating to FASD, they are indeed a health clinic, likely helping clients face challenges such as the ones in this article.

Those of you who work in FASD client services and support sectors will be interested to read this.  I know from speaking with professionals working with FASD clients, that the transition from child/youth to adult status is difficult for clients in many regards, such as health care, financial supports, and assumed independence.  This article outlines the difficulties experienced in terms of the health care transition.  In other words, clients with FASD move from a paediatric health care setting into an adult health care system in which privacy is revered, appointments must be kept, and guardians are left standing on the sidelines with little to no ability to help the person with neurodevelopmental challenges.

As Dr. Racine, Director of the Neuroethics research unit at the IRCM contends, “Health care transition is a crucial process in the lives of youth with neurodevelopmental disabilities and their parents…  Transition challenges are likely to be greater among these adolescents because of the complexity of their health care needs and the stigma associated with physical and intellectual disabilities that may accompany their disorders.  Some individuals believe they were suddenly removed from paediatric care and thrust into a foreign system for which they had not been adequately prepared.”

The authors of the study go on to discuss their recommendations for amending this situation.  One such suggestion is to allow flexibility in the age requirement for transition from child to adult health care systems such that the individual is sufficiently developmentally prepared for that transition, as opposed to forcing the transition based on an arbitrary age.

This research was funded by the Canadian Institutes of Health Research and the Fonds de recherche du Québec – Santé.  To access the academic journal article please visit: http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract&jnlKy=5&atlKy=12663&isuKy=1192&isArt=t&fromfold=Current+Issue&fold=Abstract

 

 

FASD requires more than talk

FASD requires more than talk

By: The StarPhoenix, 22 Jan 2014

Accessed on: 23 Jan 2014

Commentary by: Krystal Glowatski

As a follow-up to the meeting of FASD experts in Saskatoon in mid-January to discuss the issue of FASD in Saskatchewan, The StarPhoenix ran a story titled, “FASD requires more than talk.”

The story outlines the preventable nature of FASD, but also sets the stage for the limitations on prevention as a solution to FASD.  While the solution seems simple – don’t drink while you’re pregnant and you will not produce a child with FASD – there are limitations on the controls government can place over women’s rights when it comes to their bodies.

The article states, “A 1997 Supreme Court decision made it clear… that governments have limited powers in forcibly preventing pregnant women from drinking or having them take solvent-abuse prevention programs in the guise of protecting the fetus.  Women in Canada have the right to control what’s done to their bodies even if society disagrees with how they exercise that right.”

For example, as this article points out, there are many awareness campaigns out there, informing women and girls of the dangers of drinking alcohol while pregnant.  This is an excellent initiative – for some women.

The problem, however, is that while women do not wish harm on their babies, there are issues that need to be addressed which extend beyond awareness.  For example, women often do not know they are pregnant for the first while – something that is often mentioned at conferences on FASD and by advocates promoting prevention through abstaining from alcohol altogether.  If you recall a news blog I wrote in early January about pregnancy test dispensers being placed in pubs, the goal of these dispensers is to offer awareness to women going out for drinks.  By taking a pregnancy test at the earliest possible moment, women can cease drinking immediately, thus reducing the potential harm to their fetus.  However, some women may be struggling with alcohol and other addictions.  The initiative is an inventive one for certain, but I hope there will be further focus on other issues causing FASD – issues such as addiction, trauma, poverty, abuse, and the effects of colonialism.

As the final passage of this article states, “It is the responsibility of governments to try to address the social problems at the root of these issues, including making sure that women have the financial security to take control of their lives.  It may not be cheap, but it costs society less in the long run than dealing with FASD victims for their entire lives.”

Fetal Alcohol Spectrum Disorder experts meet in Saskatoon: Discuss ways to prevent Canadian women from drinking while pregnant

Fetal Alcohol Spectrum Disorder experts meet in Saskatoon: Discuss ways to prevent Canadian women from drinking while pregnant

By: Bre McAdam (News Talk 980 CJME), 20 Jan 2014

Accessed on: 20 Jan 2014

Commentary by: Krystal Glowatski

This week, a two-day meeting in Saskatoon, Saskatchewan was held where FASD experts discussed prevention of FASD in the province.  The experts addressed what has been done in terms of FASD prevention over the past 10 years and worked on a plan for the next decade.

The Canada FASD Research Network estimates that there are 55,708 people in Saskatchewan who might have FASD.  Minister of Social Services, June Draude, states that each of those individuals cost approximately $1.5 million in terms of health care, education, and corrections.  She states that, “…more importantly it has an impact on society as a whole.  The human cost within the family, within the community and within that child.”

Jocelynn Cook, executive director of the Canada FASD Research Network, explained the need to focus on “risky drinking.”  Draude elaborated that there needs to be support for mothers and pregnant women with alcohol addictions, such as detox and providing doctors with the proper information to provide to their patients.

These suggestions come on the heels of recent reports from the Center for Disease Control and Prevention (CDC) that doctors do not often ask their patients about alcohol use.  The CDC states that it’s time for a change, as the risks associated with alcohol consumption can be many and in some cases, severe.  For more on that story visit: http://www.cdc.gov/vitalsigns/alcohol-screening-counseling/

This article supports my commentary from last week, in that there’s often a heavy focus on prevention.  Don’t get me wrong, prevention, if successful, would be the best way to eventually eliminate FASD.  But there are still people in this province – approximately 55,708 people according the Canada FASD Research Network – who may be effected by this disorder and we need to include solutions to these individuals’ plights as well.

Cost of FASD will snowball: Ontario nurses

Cost of FASD will snowball: Ontario nurses

By: Craig Gilbert (London Community News), 14 Jan 2014

Accessed on: 14 Jan 2014

Commentary by: Krystal Glowatski

On Monday, two nurses from the Registered Nurses Association of Ontario (RNAO) presented a case to the Select Committee on Developmental Services, composed of MPPs from all three parties who must put together a report and recommendations for the legislature regarding a comprehensive strategy for children and adults with intellectual disabilities.

The message from the nurses was clear: Prevention is key; if Ontario doesn’t “get out in front of fetal alcohol spectrum disorder (FASD)… we’ll all pay a lot more down the road.”

The nurses made a point to highlight the extent of FASD costs and problems – both problems for the individuals and larger social problems.  They recognized that FASD isn’t only a health issue but also an education and justice issue.  Liberal MPP Soo Wong stepped in to highlight this point by stating, “You might label little Johnny as a behavioural problem when in fact he has a medical condition…  And it’s preventable.  Teachers are not familiar with this term and are therefore not properly supported in the classroom.  It’s not just about the health sector.  It clearly is an education, a justice issue: they intertwine.”

While BC, Alberta, Saskatchewan, and Manitoba have already created comprehensive strategies for dealing with FASD and mental health issues Ontario has yet to do so.  The nurses are calling on the government to set this into motion now.

Currently, FASD Ontario Network of Expertise’s (ONE) website states they are drafting one.

In these projects there is often a heavy focus on prevention.  But what about all of the individuals who have already been diagnosed?  Or worse yet – those who have FASD but don’t even know it.  What should be done about individuals who are in dire need of assessment, diagnosis, and services?

TO THE HONOURABLE THE SPEAKER AND MEMBERS OF THE SENATE: The disability Fetal Alcohol Spectrum Disorder is not recognised by the federal government as a disability. This creates difficulties for families living with FASD with state and federal services

TO THE HONOURABLE THE SPEAKER AND MEMBERS OF THE SENATE: The disability Fetal Alcohol Spectrum Disorder is not recognised by the federal government as a disability. This creates difficulties for families living with FASD with state and federal services

Petition by
 Anne Russell of the Russell Family Fetal Alcohol Disorders Association (Accessed on December 14th)

Commentary by Shauna Makie

Anne Russell of the Russell Family Fetal Alcohol Disorders Association in Australia has started a petition for the Speaker and Members of the Senate to recognize FASD as a federally recognized disability. Russell approaches the dilemma by having readers recognize the challenges that often go unseen for those individuals living with FASD. “Their days are spent trying to make sense of what is happening to them, rather than learning from their experiences” Russell declares, and that their cognitive disability goes masked by other social systems such as the welfare, employment, mental health, drug and alcohol, prison, and disability services as a result of their undiagnosed disability. Although some organizations do recognize FASD as a considerable cognitive disability that qualifies for certain programming, the Federal Government does not include it as a disability.

In Canada, particularly in Saskatchewan, FASD is recognized as a disability. However, the ambiguity of FASD as a disability is found in the process of diagnosis—or lack there of. Saskatchewan, and other provinces often suffer both financially and resourcefully in allocating services to attain an FASD diagnosis in order to qualify for appropriate programming. As Russell identified, without the government investing directly into understanding and diagnosing FASD, these individuals are placed in insufficient programs that lead to further suffering elongating the forging of secondary disabilities.

 

Prenatal Exposure to Alcohol Disrupts Brain Circuitry: No Safe Level of Drinking During Pregnancy, Neuroscientist Says

Prenatal Exposure to Alcohol Disrupts Brain Circuitry : No Safe Level of Drinking During Pregnancy, Neuroscientist says

From: Science Daily (December 3, 2013) (Accessed December 6, 2013).

Commentary by Krystal Glowatski 

Despite recent research out of Europe contending that consuming alcohol during pregnancy does not have negative effects on children, this study argues quite the opposite.  What this issue really boils down to is the fact that while sometimes alcohol may effect a fetus, other times it may not – but why risk it?  We still do not know the full range of effects alcohol can have, the amount of alcohol (if any) that can be deemed “safe” during pregnancy, which term of pregnancy is most susceptible to the effects of alcohol, nor if certain types of alcohol have a larger impact than others.

Stated quite simply, and conservatively: “If you consume alcohol when you are pregnant you can disrupt the development of your baby’s brain,” said Kelly Huffman, assistant professor of psychology at UC Riverside and lead author of the study.  While drinking during pregnancy does not necessarily indicate the presence of FASD, drinking while pregnant does change the structure of the brain.  Perhaps one of the most straightforward statements on drinking while pregnant I have ever heard was stated in this article: “Would you put whiskey in your baby’s bottle? Drinking during pregnancy is not that much different…  If you ask me if you have three glasses of wine during pregnancy will your child have FASD, I would say probably not. If you ask if there will be changes in the brain, I would say, probably. There is no safe level of drinking during pregnancy.”

The fact that even minimal drinking can change the brain’s structure is powerful enough to serve as a warning to the masses.  While more research needs to be done to find out the intricacies of the dangers of alcohol to pregnant women and their babies, for now we know – even the smallest amount of alcohol can change the brain.

 

Saskatoon courtroom dedicated to mental health issues Docket deals with psychiatric and cognitive disorders in organized, efficient way

Saskatoon courtroom dedicated to mental health issues Docket deals with psychiatric and cognitive disorders in organized, efficient way

Bre McAdam (November 21st, 2013)(Accessed November 28th, 2013).

Commentary by Shauna Makie 

Saskatoon justice officials have come together to develop a new courtroom in Saskatoon that is dedicated to overseeing offenders living with mental health issues and cognitive disorders. The Mental Health Strategy (MHS) docket will be held twice a month at the Saskatoon Provincial Court for those living with a range of disorders in attempts to respond to the needs of offenders while dealing with the court system. The MHS will be focusing on a holistic approach to connect offenders to appropriate support and supervision services. Val Adamko summarized that the goal is to provide offender specific sentences which should reduce recidivism while promoting better rehabilitation of the offender. Leslie Allen, executive director of Saskatchewan’s Fetal Alcohol Spectrum Disorder (FASD) support network, was also in attendance and stated how the criminal justice system often becomes a revolving door for offenders living with mental illness, and in particular, that those with FASD are more inclined to struggle with decision making and maneuvering through court practices.

The recognition of the challenges faced for those living with FASD and the complexities they face in their engagement with the criminal justice system by justice officials provides hope for those advocating for this particular population of offenders. This new process will provide the courts an opportunity to slow things down and give offenders living with mental health challenges an opportunity to have a fair trial and access to external supports that may not otherwise be in place.

Yukon MP plans private member bill on FASD

Yukon MP plans private member bill on FASD

CBC News (November 19th, 2013) (Accessed November 24th, 2013)

Commentary by Krystal Glowatski

Ryan Leef, a Yukon MP, is in the process of writing a private members bill that recognizes FASD as a unique issue within the justice system.  The bill recognizes that although the Conservative government embraces a “tough on crime” mandate, those with FASD require innovative responses in order to address the needs they bring with them into the CJS.  Leef says, “…jail is[n’t] always the best solution…treatment, not jail, might be a better option.”

Leef also recognizes that diagnosis of FASD is complicated.  While FASD is not an excuse from responsibility for one’s actions, such as criminal offences, it is important to find creative and effective ways of addressing the issue of FASD.  This is a big step for practitioners and advocates.  Out of the Consensus Development Conference on FASD and Legal Issues in Edmonton, AB, there was an amazing array of recommendations put forth by the Jury.  After the closing ceremonies where the draft of recommendations was reviewed, there were mixed opinions flowing through the crowd.  While some viewed the consensus statement as the breakthrough they’d been waiting for, others felt this would remain a document of recommendations, not to be re-visited and given the opportunity to instate real change.  Leef’s bill has been called just the opening part of a discussion on FASD and the criminal justice system.  In fact, FASD was a topic of interest “during a recent meeting of federal, territorial, and provincial justice ministers.”

Even if the all of the recommendations from the Consensus Development Conference aren’t implemented, I think it’s safe to say the discussions are happening.  We are moving in the direction of change, and into an environment of fostering proper supports for those offenders who have FASD.

Raising Adrian – My Own Experience with FASD in America

Raising Adrian – My Own Experience with FASD in America

Helen Ramaglia, The Chronicle of Social Change: Children and Youth, Front and Centre (November 6th, 2013) (Accessed November 14th, 2013)

Commentary by Krystal Glowatski

This story is about an adoptive mother to not one, but two children affected by FASD.  Twice a month I take to the web and find a news article about FASD and provide a summary and my thoughts.  I usually tend to seek out the hard-hitting and provocative articles about offenders in the CJS with FASD.  However, this week I couldn’t help but be drawn to this heart-felt story about struggle, hope, and success.

Sometimes in fighting for the rights of FASD offenders, we forget about the basics – the rights of human beings, and of course in the context of this page, the rights of individuals who struggle with FASD on a daily basis.  The mother who wrote this story fought for years in many sectors – social services, education, and health to name a few – just for a diagnosis and effective strategies in creating success for her children with FASD.  After 3 years of struggle, her children are beginning to succeed both at home and at school.

As this mother says, by arming ourselves with information, education, and the right tools, we can assist those with FASD to be the best they can be.  It will always be an uphill battle, but there is hope.  That is what this page is about – providing you, our readers, with information, education, and the right tools to assist you in the course of your work, and perhaps personal lives.  With that, I encourage you to explore our website and arm yourselves – you never know when you’ll be able to help someone be his or her best.

Inmate gets another year for prison stabbing ‘The victim did not instigate an altercation and had no opportunity to defend himself’

Inmate gets another year for prison stabbing: ‘The victim did not instigate an altercation and had no opportunity to defend himself’

Inmate gets another year for prison stabbing: ‘The victim did not instigate an altercation and had no opportunity to defend himself’

Kamloops: The Daily News (October 23rd, 2013) (Accessed November 3, 2013)

Commentary by Krystal Glowatski

Derek Baptiste, an inmate at KRCC (Kamloops), will serve one additional year in prison for stabbing a fellow inmate.  While the defence wanted the one-year sentence to be served concurrently, to avoid the “warehouse” phenomenon, the judge agreed with the Crown that one additional year is not excessive.  Baptiste was originally jailed for: four break-and-enters, a breach of recognizance, and possession of a dangerous weapon.  Based on these offences, the fact that this individual has FASD, and the recent Consensus Development Conference on FASD and Legal Issues, there are likely a number of people out there who would argue that jail is excessive for this individual.

While FASD should not be a “get-out-of-jail-free-card,” there should be special consideration for the issues that plague individuals with FASD.  Unfortunately, these individuals are vulnerable to begin with and placing them in prisons only makes them that much more susceptible to victimization.  Alternative forms of accountability should be considered more often when the court is aware of an individual’s diagnosis of FASD.  As stated in the draft of the Consensus Statement (Vol. 5), it is recommended that there should be consideration by Parliament to make conditional sentences more available for vulnerable individuals, such as those who have FASD.  I suppose the question remains – where should these changes take root?  Is it the responsibility of judges to acknowledge FASD and use what discretion they have to recognize the special considerations necessary to help these individuals, or is it the responsibility of higher powers such as the government to drastically change legislation?  This is an interesting case, in which the individual is documented as having FASD (something that isn’t often recognized in the prison population), yet he was sentenced based on regular standards.  Perhaps more time is needed to start seeing changes within sentencing as they have been envisioned at the Consensus Development Conference in September 2013.