CanFASD Advocates for an Accessible Canada for Individuals with FASD

f28df-1445359631870Did you know that the Government of Canada is developing new accessibility legislation? The goal is to promote equality of opportunity, and increase inclusion and participation of Canadians who have disabilities or functional limitations. They asked Canadians,

What does an accessible Canada mean to you? 

To create a more accessible Canada for individuals with FASD and their families, CanFASD believes that the proposed Accessibility Act should:

  1. Recognize invisible disabilities such as neurodevelopmental disorders, regardless of IQ.

  2. Ensure equitable access to FASD diagnostic services regardless of age or geographical location.

  3. Allow for specialized funding and/or tax benefits for FASD specific/FASD informed interventions in education, recreation, addictions, housing, health and justice regardless of age or IQ.

  4. Address stigma (i.e., without prejudice so women who drink during pregnancy are offered assistance and not subject to punitive measures). Without protecting the legal status and rights of the mother, how can we expect them to provide information on alcohol consumption during pregnancy?

  5. Recognize the lifelong complexity of FASD and that the need for services and supports does not diminish with age.

  6. Speak to the need for services and supports (social, physical and financial) for those who care for individuals with FASD including caregivers and siblings.

  7. Encourage/support applied FASD research, particularly intervention, diagnostic based research, and longitudinal studies.

  8. Previously mentioned, but worth reinforcing, is the need for access to services and supports regardless of IQ for those “at risk” or diagnosed with FASD.

  9. Speak to the need for cross-sectorial information sharing while respecting the individual’s right to privacy. There needs to be a process by which health information can be shared with social services, justice, education, etc.

  10. Consider confirmed eligibility for disability tax credit for individuals with FASD and their caregivers. Disability tax credit or alternative tax credits should be available to parents who are financially supporting their children regardless of the residency or age of the individual with FASD.

  11. Support guaranteed living allowances for people with disabilities. Persons with disability allowances should not be disallowed or discouraged from seeking part time work.

  12. Allow for some form of representational agreements, which are interprovincial in scope.

  13. Recognize the mental health complexity of FASD and resulting ramifications for health, education, and justice. This may include the need for a collaborative funding agreement between the federal, provincial, and territorial governments.

  14. Facilitate the development of supported living options for individuals with FASD. This could be encouraged through tax benefits for landlords renting to individuals with disabilities or the provision of funds for the development and ongoing operation of low barrier, supportive housing options for individuals with FASD.

  15. Require an individualized support plan be developed upon diagnosis which would address not only the needs for support but also the strengths of the individual diagnosed with FASD.

  16. Require screening for FASD for all those involved with the Criminal Justice System and require the CJS to provide FASD diagnostic services, FASD informed interventions, and specialized case management for any individual identified as potentially having FASD.

  17. Ideally, include the appointment of an FASD advocate who could speak to the needs of individual with FASD on a national level, with subsequent provincial counterparts. Since the incidence of FASD is so high, it is warranted to have a specific FASD advocate.

Find out more about the accessibility legislation here.

Retrieved from: https://canfasdblog.wordpress.com/2017/03/13/canfasd-advocates-for-an-accessible-canada-for-individuals-with-fasd/

 

Here’s how infections during pregnancy may affect your baby

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Washington D.C.: A team of researchers has shed some light on how infections during pregnancy may interfere with the genes linked to prenatal brain development.

If a mother picks up an infection during pregnancy, her immune system will kick into action to clear the infection, but this self-defence mechanism may also have a small influence how her child’s brain develops in the womb, in ways that are similar to how the brain develops in autism spectrum disorders. Now, researchers have shown why this may be the case.

Scientists at the University of Cyprus, University of Cambridge, University of California, San Diego, and Stanford University used rats and mice to help map the complex biological cascade caused by the mother’s immune response, which may lead to important consequences.

Maternal infections during pregnancy are a known risk factor for abnormal fetal development. Most strikingly, this has been seen during the recent emergence of Zika virus, which led to babies being born with an abnormally small head and brain (known as ‘microcephaly’). In the case of Zika, the virus has its impact by directly attacking fetal brain tissue. However, for most other infections, such as influenza, the infectious agent typically has a more indirect impact on fetal development.

“It’s important to underscore that the increase in risk is really small – too small to be meaningfully applied to specific individuals, and is only seen in very large studies when examining many thousands of people,” said lead author Dr Michael Lombardo. “Nevertheless, the biological cascade triggered by this effect is not well understood, particularly in how it may be similar to known biology behind conditions like autism. This was the motivation behind why we did the study.”

To understand how activating a mother’s immune system may affect her child’s brain development, Dr Lombardo and colleagues examined the activity of genes in the brain after injecting pregnant rats and mice with a substance called lipopolysaccharide. This substance contains no infectious agent and thus does not make the mothers sick, but will elicit a strong immune response in the mother, characterized by an increase in levels of cytokines. These are small immune signalling molecules that can have important effects on brain cells and the connections between these cells (known as ‘synapses’ in the fetus’s brain.

The scientists found that maternal immune activation alters the activity of multiple genes and pathways in the fetus’s brain. Importantly, many of these genes are known to be important in the development of autism and to key brain developmental processes that occur before birth. They believe that these effects may help to explain why maternal immune activation carries a small increased risk for later atypical neurodevelopment.

While the effects caused by maternal immune activation are transient, the researchers argue that they may be very potent during fetal development and may cause different characteristics in the individual depending on when it occurs during pregnancy. The work underscores the importance of the idea that genes and the environment interact and that their interaction may have important roles in better understanding how risk for neurodevelopmental disorders manifests.

The study is published in the journal Molecular Psychiatry.

Retrieved from:  http://www.asianage.com/life/health/220317/heres-how-infections-during-pregnancy-may-affect-your-baby.html

NETWORK MEETINGS APRIL 4, 2017 AGENDA

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Date: Tuesday April 4th, 2017

Location: Catholic Social Services – 10320 146 Street 

Supports and Services Meeting: 8:30 – 9:30 am, AGENDA

  1. Call to order
  2. Approval last meeting minutes
  3. Reporting
  4. Finances
  5. Short-Term Crisis Intervention Worker
  6. Additions
  7. Program Updates

EFAN Society Meeting: 9:30 – 11:30 am, AGENDA

  1. Call to order
  2. Approval last meeting minutes
  3. Finances
  4. New Research
  5. Council, Interagency, Committee Updates
  6. Additions
  7. Program Updates

Click to download agenda:  EFAN Agenda April 2017

Fetal Alcohol Syndrome: The Other Reason To Pass On The Martini

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Fetal alcohol syndrome or FAS in babies and children is the direct fallout of maternal alcohol consumption during pregnancy. It manifests in the form of genetic anomalies, permanent brain damage, prenatal or postnatal growth restriction, abnormal facial features or bone growth. While FAS is incurable, early diagnosis, intervention treatment services may help.

All About Fetal Alcohol Syndrome

It is a no-brainer that you shouldn’t mix pregnancy and alcohol. They just don’t go together. In fact, study data suggests that alcohol actually thwarts your efforts to get pregnant.

More than 50 percent reduction in the probability of conception during a menstrual cycle has been observed in women who consumed alcohol. Additionally, caffeine consumption amplifies the effects of alcohol all the more in such cases.1

Alcohol consumption before and during pregnancy is also linked to low birth weight. According to a study involving 263 women who delivered live children, consuming an average of one ounce of absolute alcohol daily before pregnancy was associated with an average decrease in birth weight of 91 grams in the infant. When the same amount was consumed in late pregnancy, it led to a decrease of 160 grams in the infant’s body weight on birth.2

Furthermore, alcohol consumption before conception and during pregnancy is also linked to an increased risk of deadly diseases such as childhood leukemia.3

It’s no surprise then that the first thing that any doctor would tell you when you plan a baby is to stop indulging in alcoholic beverages (in addition to starting you on prenatals). But the alcohol-related birth defect you need to be concerned about the most is fetal alcohol syndrome (FAS), which is estimated to affect 119,000 children every year.4

What Is Fetal Alcohol Syndrome?

When you are pregnant and consume alcohol, it can easily pass on to your unborn baby through the placenta. This is what causes fetal alcohol syndrome (FAS), the most severe and visibly recognizable form of fetal alcohol spectrum disorder (FASD). The range of disorders under the FASD umbrella include fetal alcohol syndrome, partial fetal alcohol syndrome, alcohol-related birth defects, alcohol-related neurodevelopment disorder, and neurobehavioral disorder associated with prenatal alcohol exposure.

Fetal alcohol syndrome is linked to a wide range of effects including permanent brain damage, genetic anomalies, prenatal or postnatal growth restriction. The most visible manifestation of FAS is certain characteristic dysmorphic facial features such as a small head, a smooth ridge between the upper lip and nose, small and wide-set eyes, extremely thin upper lip or other unusual facial features, below average height and weight, as well as deformed limbs or fingers. These, along with cognitive, behavioral, emotional, and adaptive functioning deficits are some of the signs of fetal alcohol syndrome in babies and children.5

Babies with FAS may also exhibit minor anomalies of the heart and external genitalia.6 They may have lifelong implications of the disease if they have neurodevelopmental impairments associated with it. It can lead to substantial secondary disabilities like academic failure, substance abuse, mental health issues, contact with law enforcement, failure to live independently and procure and maintain jobs.7

What Causes It?

Alcohol use during pregnancy is the only cause of fetal alcohol syndrome. About 10 percent of women around the world consume alcohol during pregnancy and one in 67 women deliver a child with FAS. The only silver lining is that not every woman who consumes alcohol during pregnancy will give birth to a baby with fetal alcohol syndrome. According to a study of WHO member states, the rate of this syndrome is recorded to be the highest in the European region and lowest in countries of the eastern Mediterranean region and southeast Asian region.8

The pattern, amount or critical period of prenatal exposure to alcohol leading to the development of FAS is still not clear. However, some other factors that might influence an unborn baby’s susceptibility to the detrimental effects of alcohol also need to be considered. These include variability in the metabolism and genetic background of both mother and fetus, environmental factors, maternal smoking, nutritional status, stress levels and even the father’s lifestyle.9

Interestingly, a study of South African women observed that mothers of children with a fetal alcohol syndrome disorder are less likely to be married and more likely to have a male partner who drank during the pregnancy. The study also exhibited that the blood alcohol concentrations of mothers who gave birth to babies with fetal alcohol syndrome were higher than those who gave birth to those with partial fetal alcohol syndrome.10

Can FAS Be Treated?

The only way to protect your child from fetal alcohol syndrome is to completely abstain from alcohol during the entire course of the pregnancy. If you have a problem with alcohol, it is best to consult a doctor before planning a baby. If you consumed alcohol when you weren’t aware of your pregnancy, make sure you let your ob-gyn know all the details.

While there is no cure for any of the fetal alcohol syndrome disorders, research suggests that early diagnosis and intervention treatment services can make the affected child’s life a lot better. Special education and social services and support from a loving and nurturing family can make a big difference. Medical professionals like mental health specialists, speech therapists, and physical therapists may be able to help in making affected children as independent as possible. Behavior and education therapy, as well as medications like stimulants, may be employed to improve certain symptoms of fetal alcohol syndrome.11

Retrieved from:  http://www.curejoy.com/content/fetal-alcohol-syndrome/

Upcoming Conferences and Events

Mark your calendars for these upcoming FASD relevant events! Click on each picture for more information. 

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The FASD Network of Saskatchewan is hosting “Challenge the Conversation” this week. Please leave us a comment about your experiences and conversations if you’re attending this event. We’d love to hear from you!

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The 22nd Annual National Supported Employment Conference is May 30 to June, 2017. CanFASD researchers are attending this conference and we will share what we learn on the blog. We’re looking forward to learning about tangible strategies for supporting successful employment as well as advances to the Collective Impact Framework priority areas that were developed at last year’s CASE conference.

Collective Impact is defined as the commitment of a group of actors from different sectors to a common agenda for solving a specific social problem, using a structured form of collaboration. The concept of collective impact hinges on the idea that complex social problems are beyond the capacity of any one sector, working alone, to effectively address them.   In order to create lasting solutions to such social problems on a large-scale, a coordinated effort is needed across multiple sectors willing to work together towards a clearly defined goal. From the CASE Conference, held in Edmonton, Alberta in June, 2016 there were six clear priority areas identified by delegates of this event. These are areas where continued dialogue within a Collective Impact Framework improvement is perceived to have the potential to leverage greater outcomes.

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The 2017 National FASD Conference will be in Calgary on October 24 -27, 2017. The Government of Alberta will be hosting this event on behalf of the Canada Northwest FASD Partnership (CNFASDP) and the Alberta FASD Cross-Ministry Committee. It will combine the CNFASDP and the annual Alberta FASD Conferences.

The call for abstracts is open until April 5, 2017 and registration for the conference opens in May 2017.

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CanFASD presented a poster at the 2017 Early Years Conference and we’re looking forward to the 2018 conference.

 

Do Women Really Stop Drinking When They Find Out They’re Pregnant?

The Prevention Conversation: A Shared Responsibility Project

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Recommendations surrounding women’s health before, during, and after pregnancy haven’t always been straightforward or easy to digest. Prime example: Whether or not it’s safe to drink during pregnancy and how much? To take a closer look at what’s really going on, Katherine Hartmann, M.D., Ph.D., deputy director of the Institute for Medicine and Public Health at Vanderbilt University, went searching for answers—real numbers indicating whether women, specifically newly pregnant women, were actually pouring themselves that glass of red wine.

Hartmann’s research, which was published in the April 2017 issue of Obstetrics & Gynecology, comes after a public firestorm arose when the CDC issued a new recommendation that all women who are planning a pregnancy or not using reliable contraception should abstain from alcohol use entirely. That’s a pretty sweeping call-to-action, considering there are 61 million American women of reproductive age, and about 43 million are considered to be “potentially at…

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More than 3 million US women at risk for alcohol-exposed pregnancy

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An estimated 3.3 million women between the ages of 15 and 44 years are at risk of exposing their developing baby to alcohol because they are drinking, sexually active, and not using birth control to prevent pregnancy, according to the latest CDC Vital Signs report released today. The report also found that 3 in 4 women who want to get pregnant as soon as possible do not stop drinking alcohol when they stop using birth control.

Alcohol use during pregnancy, even within the first few weeks and before a woman knows she is pregnant, can cause lasting physical, behavioral, and intellectual disabilities that can last for a child’s lifetime. These disabilities are known as fetal alcohol spectrum disorders (FASDs). There is no known safe amount of alcohol – even beer or wine – that is safe for a woman to drink at any stage of pregnancy.

“Alcohol can permanently harm a developing baby before a woman knows she is pregnant,” said CDC Principal Deputy Director Anne Schuchat, M.D. “About half of all pregnancies in the United States are unplanned, and even if planned, most women won’t know they are pregnant for the first month or so, when they might still be drinking. The risk is real. Why take the chance?”

Healthcare providers should advise women who want to become pregnant to stop drinking alcohol as soon as they stop using birth control. Most women don’t know they are pregnant until they are four to six weeks into the pregnancy and could unknowingly be exposing their developing baby to alcohol. FASDs are completely preventable if a woman does not drink alcohol during pregnancy.

For this Vital Signs report, scientists from CDC’s National Center on Birth Defects and Developmental Disabilities analyzed data from the 2011–2013 National Survey of Family Growth, which gathers information on family life, marriage, divorce, pregnancy, infertility, use of birth control, and men’s and women’s health. National estimates of alcohol-exposed pregnancy were calculated among 4,303 non-pregnant, non-sterile women ages 15–44 years. A woman was considered to be at risk for an alcohol-exposed pregnancy if in the past month she was not sterile, her partner was not known to be sterile, she had vaginal sex with a male, drank any alcohol, and did not use birth control. A woman was considered to be trying to get pregnant if a desired pregnancy was the reason she and her partner stopped using contraception.

Overall, 3.3 million US women (7.3 percent of women ages 15–44 who were having sex, who were non-pregnant and non-sterile) were at risk of exposing their developing baby to alcohol if they were to become pregnant.

“Every woman who is pregnant or trying to get pregnant – and her partner – want a healthy baby. But they may not be aware that drinking any alcohol at any stage of pregnancy can cause a range of disabilities for their child,” said Coleen Boyle, Ph.D., director of CDC’s National Center on Birth Defects and Developmental Disabilities. “It is critical for healthcare providers to assess a woman’s drinking habits during routine medical visits; advise her not to drink at all if she is pregnant, trying to get pregnant or sexually active and not using birth control; and recommend services if she needs help to stop drinking.”

CDC works to prevent alcohol-exposed pregnancies and FASDs through a variety of activities including:

  • Tracking alcohol use among women of reproductive age in the United States;
  • Supporting the implementation of evidence-based interventions to reduce risky alcohol use and alcohol-exposed pregnancies, including through alcohol screening and brief intervention and the CHOICES program;
  • Collaborating with FASD Practice and Implementation Centers and national partners to promote practice changes among healthcare providers in the prevention, identification, and management of FASDs;
  • Promoting effective interventions for children, adolescents, and young adults living with FASDs and their families; and
  • Offering FASD-related educational information and materials for women of reproductive age, healthcare providers, and the general public.

For more information about alcohol use during pregnancy and FASDs, please visit www.cdc.gov/fasd.

Retrieved from:  http://newrelevant.com/3-million-us-women-risk-alcohol-exposed-pregnancy/

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