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Edmonton Alberta is now home to a unique housing facility specifically for individuals diagnosed with fetal alcohol spectrum disorder (FASD). The Hope Terrace Permanent Supportive Housing (PSH) program includes access to a case management and 24/hour support team. This facility is owned by Homeward Trust with the Bissell Centre providing internal and external support services for residents.

Internal supports are provided by a case management team that is able to tailor programming and support to the resident. The needs addressed may range from mental health and addiction supports to daily living and financial skills, however, are unique to the individual needs of the resident.

The case management team’s support workers are able to accompany residents to various appointments and commitment and work to establish a sense of community through group outings and in-house cultural supports for indigenous folks.

2011-07-11-19-19hope-terrace

Image source: http://homewardtrust.ca/programs/completed-details.php?id=23

Bissel Centre website for contact & extended information.

Global News Edmonton also covered this story. Click on the link for the news article and footage.

KnowFASD

After what seems like far too long, KnowFASD is back in operation! To those of you who use the site regularly and have been waiting for its return, thank you for your patience.

If you have never visited the site, please feel free to drop by and check it out! Take a browse through the interactive home page and learn more/find help on the site’s wiki.

Our goal with KnowFASD is to provide a comprehensive site where viewers can learn about the neurobehavioural deficits associated with FASD throughout the lifespan and link to intervention options.

The main homepage of the website is an interactive interface where viewers can scroll through the lifespan of individuals with FASD, with neurobehavioural issues at each developmental stage presented as they may appear in day-to-day life. By clicking on a neurobehavioural issue, viewers are directed to a “wiki” (which works in a similar fashion to Wikipedia) housing information from current research on the neurobehavioural issue at hand. Each wiki page discusses a specific neurobehavioural issue: how it presents, potential causes, and potential consequences. At the bottom of each page, a link is provided to topic-specific intervention options.

Please feel free to visit the site, pass it along, and give us your feedback or suggestions. Check back often as we continue to upload information, links, and resources.

Visit KnowFASD

Great Opportunity for adults with FASD in Edmonton!

Edmonton and area Fetal Alcohol Network Society

Open Arms Program

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Image source: http://www.cbc.ca/news/canada/north/yukon-s-pioneer-fasd-residence-is-working-staff-1.2741867

 

In May, we wrote a post on Supportive Living for Adults with FASD in Yukon Territory. “Dun Kenji Ku” (“The People’s Place”), a housing complex for individuals with FASD which offers on-site supports and connections to community resources, has been in operation for over 6 months now.

We are pleased to learn that the program appears to be working, citing lower rates for serious incidents and RCMP involvement. With the potential to mitigate the secondary disabilities associated with FASD, housing complexes such as Dun Kenji Ku could prove to be an excellent intervention option for adults with FASD. Currently, 15 individuals are successfully living in the building.

Read the CBC news article/watch the video for more information and to hear from residents.

Image source: http://www.yukon-news.com/news/new-housing-opens-for-people-with-fasd/

 

Difficulty with independent living is an issue faced by many adults with FASD. Research by Streissguth et al. showed that approximately 80% of adults with FASD in their study were living dependently.1  Streissguth et al.2  found that living in a stable supportive home was a protective factor against adverse life outcomes for individuals with FASD.

The Options for Independence Society is attempting to make stable independent living arrangements more attainable by providing living space and supports for adults with FASD in Whitehorse. “Dun Kenji KU“, meaning “The People’s Place” opened in February in Whitehorse as a supportive housing building for those with FASD. The Options for Independence Society carried out the project with support from the territorial and federal governments and the city of Whitehorse.

The 14 unit building includes supports such as affordable rent, connections to community resources, and on site supports such as cooking, cleaning and maintenance assistance as well as the provision of one meal a day.

Those involved in the project hope that the housing complex will lead to decreased strain on emergency resources and improved quality of life for those with FASD through increased stability.

To read more about the housing program, see the news articles below:

New housing opens for people with FASD” in Yukon News

Options for Independence Opens New Residence”  in Whitehorse Daily Star

Options for Independence, Whitehorse YT” from Canada Mortgage and Housing Corporation

“‘Dun Kenji Ku,’ a place for people with FASD” on “Life in Yukon” Blog

References:

  1. Streissguth, A.P., Barr, H.M., Kogan, J., & Bookstein, F.L. (1996). Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE): Final Report to the Centers for Disease Control and Prevention. Seattle: University of Washington, Fetal Alcohol and Drug Unit.
  2. Streissguth, A.P., Bookstein, F.L., Barr, H.M., Sampson, P.D., O’Malley, K., & Young, J.K. (2004). Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental and Behavioural Pediatrics, 25, 228–238

 

MOFAS YAAC

Another FASD social group from MOFAS!

If you are an individual living with FASD, Minnesota would not be a bad place to be! The Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) is a non-profit organization dedicated to preventing FASD and improving the lives of those dealing with FASD. They run numerous events, learning opportunities, and support groups throughout the year.

We have featured many programs and events offered by MOFAS in the past on this blog. The latest MOFAS program that drew our attention is their “Young Adults Activity Club” (YAAC), where older adolescents and young adults with FASD can participate in social activities while caregivers take a break.

Given the social difficulties that can come with FASD and the harmful consequences they often hold (For a review, see Kully-Martens, Denys, Treit, Tamana, & Rasmussen, 2012 or check out our social skills page on the KnowFASD wiki to learn more), social exposure for adolescents and adults with FASD is valuable. This program provides a great example of the social opportunities needed by individuals with FASD, while providing the opportunity for caregivers to have some down time (it is recommended that individuals with FASD bring a friend or personal care assistant to the group).

Click on the image above for more information.

For other MOFAS programs and learning opportunities, check out their Fall 2013 Family Support and Activities and the MOFAS Calendar.

References:

Kully-Martens, K., Denys, K., Treit, S., Tamana, S., Rasmussen, C. (2012). A review of social skills deficits in individuals with fetal alcohol spectrum disorders and prenatal alcohol exposure: profiles, mechanisms, and interventions. Alcoholism, Clinical and Experimental Research, 36(4), 568-76.

Another FASD summer camp update!

Whitecrow Village

In last year’s post on FASD summer camps for kids with FASD, we mentioned the FASD LIFE Sessions offered by Whitecrow Village. LIFE Sessions reinforce the concepts of structure, predictability/consistency, and respect through adapted activities for children with team leaders who have FASD themselves. These activities run concurrently with education sessions for adults. Children, families, and Whitecrow Village staff work and learn together to create a sense of community. All ages and family members welcome. Children under 19 must be accompanied by an adult caregiver or legal guardian.

We contacted Whitecrow Village to get the scoop on this year’s LIFE Sessions opportunities. They have let us know that they have received funding for at least 2 LIFE Sessions in BC this year and have proposed for one LIFE Session  in Alaska in late summer/early fall.

For more information about this year’s sessions and schedule, contact Whitecrow Village by phone or email, join their “Friends of Whitecrow Village” Facebook group, or check out the organization’s Facebook page. Head to the Whitecrow Village LIFE Sessions webpage to learn more about the content of the sessions.

knowfasd

We recently featured our newest project, KnowFASD, in the latest edition of our iNAT newsletter. For those of you who have not yet subscribed to the iNAT newsletter, here is some information about KnowFASD:

Our goal with KnowFASD is to provide a comprehensive site where viewers can learn about the neurobehavioural deficits associated with FASD throughout the lifespan and link to intervention options.

The main homepage of the website is an interactive interface where viewers can scroll through the lifespan of individuals with FASD, with neurobehavioural issues at each developmental stage presented as they may appear in day-to-day life. By clicking on a neurobehavioural issue, viewers are directed to a “wiki” (which works in a similar fashion to Wikipedia) housing information from current research on the neurobehavioural issue at hand. Each wiki page discusses a specific neurobehavioural issue: how it presents, potential causes, and potential consequences. At the bottom of each page, a link is provided to topic-specific intervention options.

Please feel free to visit the site, pass it along, and give us your feedback or suggestions. Check back often as we continue to categorize and upload information.

Visit KnowFASD

Continuing in the vein of last month’s “Supports for Adults with FASD,” we wanted to make note of a couple more great adult FASD support services offered in the province of British Columbia.

Soroptimist International of Surrey/Delta, part of an international organization for the benefit of women, hosts biweekly inclusive social and learning groups for women age 16-24 with FASD.

The group is entitled “Totally Beautiful” and meets at the Chuck Bailey Recreation Centre in Surrey, BC. Although sessions have already started, future meetings are scheduled for March 26, April 9, and April 23. Sessions will focus on building self-confidence, support, and social skills.

For event and registration information, please refer to the event listing on BC’s “Provincial Outreach Program for FASD” (POPFASD) website.

Although Soroptimist is a women’s organization, they also host a biweekly inclusive social and learning group for men age 16-26 with FASD, entitled “the C.R.E.W”- Courageuos. Respectful. Energy. Warriors.

Remaining sessions take place March 19, April 2, and April 16 in Surrey, BC.

POPFASD also has an event listing for the C.R.E.W. outlining program and registration information.

In my search for intervention information for this blog, I come across many strategies and research studies aimed at children and youth with FASD, which is wonderful. Early intervention and lots of it is a great thing. However, the reality of the situation is that fetal alcohol spectrum disorders do not disappear with time. If you have an FASD as a child, you continue to have it as an adult.

Research by Streissguth et. al.1 shows that adolescents and adults with fetal alcohol spectrum disorders function academically at an early grade school level. Their average adaptive functioning level (i.e. daily living skills, socialization skills, communication skills) is at the level of a typically developing 7 year old. Sixty two percent of adolescents and adults with FASD showed significant maladaptive behaviours, such as poor attention and concentration, teasing/bullying, crying or laughing too easily, dependency, stubbornness, social withdrawal, impulsivity, anxiety, and sullenness).

In another study on young adults with FASD2, the secondary disabilities associated with FASD (such as disrupted school experience, difficulties in the workplace, trouble with the law,and difficulty living independently) are very apparent in adulthood. Approximately half of the participants had needed special education, with only 38% having passed primary school and only 13% having passed high school. Despite a majority of participants having received some sort of job training/preparation, only 13%  of participants had ever been employed in a regular job. Only 30% of participants in this study were either living independently or with a partner/family of their own. The remaining 60% were institutionalized or in a dependent-living situation.

Given that we often find that adults with FASD function at the level of school-aged children, ideally they should be provided with the same amount of support we would give to a child. However, this is not always the case. According to the Canadian Child Welfare Research Portal, children with disabilities in Canada  receive child welfare protection until the age of 19.  In addition to this, many individuals  with prenatal alcohol exposure do not receive an FASD diagnosis (but still experience neurobehavioural issues and difficulties with daily living), meaning that without a diagnosis they might be cut off from child protective services at an earlier age (children and youth without disabilities in the child welfare system are eligible for child protective services until age 16-19, depending on the province).

Becoming an adult, leaving the  school system, and no longer receiving child welfare services can be a huge loss of consistency and support.

All of this begs the question: What are we doing to support adults with FASD?

In a recent article from the Sudbury Star entitled “We’re just different”, Matthew Pakozdy, a young adult with FASD, speaks about the difficulties and successes of living with FASD.

The take home message from this article? supports are needed for children and adults alike with FASD, and the right supports can make a difference. Pakozdy credits a supportive mother, reliable caregivers/advocates, support staff and friends for the positive changes he has made in his life.

A few other things mentioned in the article as essential supports for individuals with FASD are a permanent cellphone with easily accessible emergency phone numbers, regular income, housing alternatives, and help to foster emotional control and healthy relationships.

With increased awareness and research about FASD, organizations are jumping on board to support adults with FASD:  

Check out Community Living British Columbia‘s “Supporting Success for Adults with FASD”, an online resource for those who work with adults with FASD

MOFASThe Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) holds a support group for adults affected by an FASD every Monday until April 2, 2013 in Saint Paul, MN.

For other posts about adult interventions, see our archived articles under Adult Interventions.

For our readers: Know of an organization that helps adults with FASD? Share it here or send us an email so we can spread the word!

 

References:

1.         Streissguth, A.P., et al., Fetal Alcohol Syndrome in adolescents and adults. The Journal of the American Medical Association, 1991. 265: p. 1961-1967.

2.         Spohr, H.-L., J. Willms, and H. Steinhausen, Fetal Alcohol Spectrum Disorders in young adulthood. The Journal of Pediatrics, 2007. 150(2): p. 175-179.e1.

 

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