http://www.cbc.ca/news/canada/british-columbia/ubc-research-fasd-1.3747981

UBC-led researchers uncover genetic effects of prenatal alcohol exposure www.cbc.ca Canadian researchers are one step closer to uncovering a biomarker associated with fetal alcohol spectrum disorder after identifying distinct patterns associated with the DNA of children who were exposed to alcohol in the womb.

This social media ideas for FASD Awareness Day on September 9th is in collaboration with OPHA Alcohol and Reproductive Health Work Group Collaboration

Every year on September 9th, International FASD Awareness Day is observed. People all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and issues related to individuals and their support networks affected by Fetal Alcohol Spectrum Disorders (FASD).

“…Without community supports in place, those with complex disabilities like autism or Fetal Alcohol Syndrome often end up in psychiatric units, nursing homes, homeless shelters or jails where they get no help or the wrong help or are subject to abuse…”
“…’It is often said that societies are judged on how they treat the most vulnerable of their members,’ Dubé rightly noted…”

25 Aug 2016

Toronto Star
[Editorial]
Help families in need now

Ontario doesn’t house people with developmental disabilities in dedicated institutions anymore — and in 2013 the province rightly apologized for doing so in the past.

But as a disturbing new report from Ontario Ombudsman Paul Dubé points out, in some ways, things haven’t changed much. People with developmental disabilities still too often end up in institutions ill-equipped to meet their needs, not by design but as the result of a broken system.

As reported by the Star’s Andrea Gordon, once adolescents with developmental disabilities “age out” of children’s services at 18 and leave high school at 21, they enter an adult system with limited day programs and assisted-housing options — crucial services for which there are often years-long wait lists. Meanwhile, the province does little to buttress stressed family caregivers, prompting many to bail out.

Without community supports in place, those with complex disabilities like autism or Fetal Alcohol Syndrome often end up in psychiatric units, nursing homes, homeless shelters or jails where they get no help or the wrong help or are subject to abuse. In these institutions they are left to languish by a province that Dubé says tends to take a “hands-off” approach to such crises. And when they are eventually released they are often returned to the abusive situations from which they were previously removed.

The ombudsman’s investigation into the developmental services system began in 2012 in response to a flood of complaints. “Some were on the brink of crisis, others firmly in its midst,” Dubé said at a press conference on Wednesday. At the time, he says, the Ministry of Community and Social Services was inflexible and officious, remarkably phlegmatic in its response to even the most horrifying cases.

And of the 1,436 complaints Dubé’s office investigated, many are truly horrifying. Consider just three:

Peter, who has autism spectrum disorder, spent12 years in psychiatric hospitals, often in restraints or crawling on the floor. It took ministry officials nearly a year to find him a home after a complaint from the ombudsman’s office.

Patrick was placed in a nursing home at 24 because his mother could not handle his aggressive behaviour. There he was repeatedly sexually assaulted by his 75-year-old roommate.

Tommy was hospitalized repeatedly because of his aggressive behaviour, including a 73-day stint at $2,000 per day.
“There are many thousands more in urgent circumstances and anxious for relief,” Dubé said.

The ombudsman claims things have gotten better, but only incrementally. Though he believes the ministry is now “well intentioned and earnest,” the system remains a “fragmented, confusing, and complex assortment of hundreds of community agencies and local processes, impossible for many individuals with developmental disabilities and their families to navigate.”

The ombudsman’s damning report offers 60 recommendations for a massive overhaul to create an integrated system where none currently exists and ensure that people with developmental disabilities get the support, care and protection they need. Most critically, Dubé argues, people with developmental disabilities must no longer be housed in hospitals, nursing homes or other inappropriate places — or returned to abusive situations.

“It is often said that societies are judged on how they treat the most vulnerable of their members,” Dubé rightly noted. By that measure, Ontario has been failing for too long. Encouragingly, Social Services Minister Helena Jaczek, seemingly chastened by the report, has committed to implementing all of Dubé’s recommendations. The ombudsman has called on the ministry to report back on its progress in six months. For the government, that may seem like a tight deadline, but for those caught up in the broken system, the urgency is long overdue.

http://haltonfasd.ca
HaltonFASD

Visit www.rockevents.ca to RSVP.

https://www.ombudsman.on.ca/Newsroom/Press-Release/2016/Ombudsman-calls-for-systemic-overhaul-to-help-adul.aspxOmbudsman Ontario
Newsroom / Press Releases / 2016
Province accepts 60 recommendations to fix chronic service gaps

(TORONTO – August 24, 2016) Ontario’s systemic failure to help desperate families who are unable to care for loved ones with developmental disabilities has left vulnerable people in dire and often dangerous circumstances, Ombudsman Paul Dubé reveals in his office’s latest report, released today.

In Nowhere to Turn, the Ombudsman reports on his office’s investigation of more than 1,400 complaints from families of adults with developmental disabilities who are in crisis situations, including being abandoned, abused, unnecessarily hospitalized and jailed.

Read the report
Ombudsman’s remarks

Facts and highlights

These “extreme and egregious cases” highlight a dire need for greater supports, services and more rigorous monitoring – and amount to “a modern-day version of institutionalization,” Mr. Dubé says in the report.

Noting that Community and Social Services Minister Helena Jaczek and her Ministry have already committed to accepting and implementing all 60 of his recommendations – including to report back to him on their progress – Mr. Dubé points out that recent efforts by the Ministry to address the gaps in the system are encouraging.

“There has been a marked improvement in response to crisis and a recognition that the Ministry plays a vital role in resolving complex cases,” he says. Prior to the investigation, provincial officials took a “well-intentioned and earnest” but hands-off approach, and families were left frustrated by inconsistencies amongst a maze of local service agencies across the province.

Despite the government’s announcement in 2014 of $810 million over three years for developmental services (bringing spending to $2 billion a year), “progress has been incremental,” the Ombudsman reports. “There is still marked inconsistency in how limited funds are prioritized and distributed” and families struggle with “interminable waitlist delays,” leaving some so desperate that they have abandoned their loved ones.

The report details 18 cases of adults with developmental disabilities and complex needs who were left homeless, abused, abandoned, or inappropriately housed in hospitals, long-term care facilities and jails. One 24-year-old man lived for months in a long-term care home, where he injured one senior and was molested by another; another man with autism spent 12 years in psychiatric units. One woman who couldn’t remain in an abusive home was moved 20 times in 34 days; another was abandoned by an exhausted, ill relative after two of her other caregivers died.

“There are many thousands more in urgent circumstances and anxious for relief,” Mr. Dubé says in the report, noting that new complaints are still coming in.

Among his recommendations are that the Ministry formally recognize its role in directly assisting with crisis cases, and direct its regional offices and service agencies that adults with developmental disabilities should not be returned to abusive situations or housed inappropriately in hospitals or long-term care facilities. Several recommendations call for improved tracking, monitoring and research to identify service gaps and allow for flexible and urgent solutions to crisis situations.

Launched in November 2012, the Special Ombudsman Response Team’s investigation involved interviews with more than 200 families and officials, and the review of more than 25,000 documents, including similar probes by coroner’s inquests and Ontario’s Auditor General. Ombudsman staff also worked to resolve individual crisis situations as they arose – including helping move 20 people from hospitals to more suitable homes.

Although some complainants raised other issues, such as a lack of services for high-functioning individuals on the autism spectrum, the report notes that the scope of the investigation was deliberately focused on “services and programs for those with complex needs in urgent situations.”

The Ombudsman is an independent officer of the Ontario legislature who resolves and investigates public complaints about provincial government bodies, municipalities, universities and school boards – and recommends solutions to individual and systemic administrative problems. The Ombudsman’s recommendations are not binding, but are generally accepted; almost all recommendations stemming from the 36 SORT investigations conducted since 2005 have been implemented, resulting in such reforms as a more secure lottery system, fairer property tax assessments and upgraded screening of newborn babies. On June 29, the province accepted all of the Ombudsman’s recommendations to improve police training for de-escalating conflict situations.

For the full report, backgrounders and video of the Ombudsman’s news conference, go to www.ombudsman.on.ca.

Aussi disponible en français

For further information, please contact:
Linda Williamson, Director of Communications, 416-586-3426,

SEPTEMBER 1ST TO 11TH, 2016
Help raise funds for Citizen Advocacy Ottawa’s Fetal Alcohol Resource Program by enjoying a delicious mocktail; a perfect non-alcoholic alternative for everyone including moms-to-be!

http://www.citizenadvocacy.org/mocktail/

MOMMY MOCKTAILS

PHOTo CoNTEST
Post a picture enjoying a mocktail on Instagram or Twitter using #FASDOttawa and you could win!

instagram    @CITIZENADVOCACY
download    @CITADVOCACYOTT

RESOURCES
RESTAURANT REGISTRATION FORM

http://www.citizenadvocacy.org/wp-content/uploads/2016/08/Mommy-Mocktails-2016-Registration-Form.pdf

Midnight Blueberry Punch

Pretty in Pink Lemonade

Chameleon Mocktail

Bluecocktail
INGREDIENTS
2 ounces Hawaiian Punch
1 ounce blueberry syrup
1 ounce lemon juice
Club soda
Garnish: blueberries speared on a cocktail toothpick

PREPARATION
Pour Hawaiian Punch, Blueberry Syrup and lemon juice into a mocktail shaker with ice
Shake
Strain into a rocks glass over ice
Top with club soda
Garnish with blueberry spear

PARTICIPATING RESTAURANTS
100%
Fratelli (Westboro) – TBD
Fratelli (Kanata) – Sept 11
St Louis Bar & Grill (Elgin St) – Sept 08
St.Louis Bar & Grill (Nepean) – TBD
Blue Cactus (Byward Market)
D’Arcy McGee’s (Kanata) – Sept 10
Napoli’s Cafe (Stittsville) – TBD
Brookstreet – Options Lounge (Kanata)
Moxie’s Grill & Bar (Kanata) – TBD
Moxie’s Grill & Bar (Bayshore)
Moxie’s Grill & Bar (Riverside)
Petit Bill’s Bistro (Wellington West)
Canvas (Wellington West) – Sept 07
The Marshes Golf Club (Kanata)
Hard Stone Grill (Nepean) – Sept 08
Chances R (Kanata)
Cafe Mia
Fox & The Feather – Sept 09
Trattoria Italia
Johnny Farina – Sept 07

FETAL ALCOHOL RESOURCE PROGRAM

The Fetal Alcohol Resource Program aims to support the large numbers of people affected by this permanent brain injury. Through education and community leadership development the program draws together resources, skills and knowledge that exists in Ottawa and provides community navigation for individuals affected by FASD and their families.

FASD AWARENESS DAY – SEPTEMBER 9TH

Every year on September 9th, International FASD Awareness Day is observed.  Proclamations are issued in countries, states, provinces, and towns all around the world.  Bells are rung at 9:09 a.m. in every time zone from New Zealand to Alaska.  People all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the plight of individuals and families who struggle with Fetal Alcohol Spectrum Disorders (FASD).  The first FASDay was celebrated on 9/9/99.  This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol.  Anytime is a good time to raise awareness about Fetal Alcohol Spectrum Disorders (FASD).

What is your community doing for FASD Awareness Day Sept. 9?
This is what is going on in Ottawa.

See the latest video http://ottawa.ctvnews.ca/video?clipId=926131 CTV News Ottawa

4:56 CTV Morning Live: Mommy Mocktails

Janet Carioni joins the bar tender from the St. Louis Bar & Grill to talk about FASD and the FARP program and the restaurant’s event on Sept. 8. Hear the link to the FARP program on Facebook.  https://www.facebook.com/FARP09092015/

SEPTEMBER 1ST TO 11TH, 2016
Help raise funds for Citizen Advocacy Ottawa’s Fetal Alcohol Resource Program by enjoying a delicious mocktail; a perfect non-alcoholic alternative for everyone including moms-to-be! Visit a participating restaurant/location (see list below) and purchase a mocktail.

http://www.citizenadvocacy.org/mocktail

On behalf of UBC Interprofessional Continuing Education, I’d like to quickly follow up with you regarding a few new conference updates and ‘Mark Your Calendar’ for upcoming conferences.

CALL FOR ABSTRACTS/ADVANCE NOTICE

      The 7^th International Conference on Fetal Alcohol Spectrum Disorder

When: March 1-4, 2017

Where: The Westin Bayshore, Vancouver, BC

Website: http://interprofessional.ubc.ca/FASD2017/default.asp

Advance Notice/Call for Abstracts: http://interprofessional.ubc.ca/FASD2017/AdvanceNotice.pdf

Please email: marketing.ipce@ubc.ca for more information and to be put on the enquiry list

To Ontario FASD parent/caregiver groups

Could you facilitate a focus group in your community BEFORE Aug. 20?
CANFASD Family Advisory Committee is suggesting an opportunity for parents/caregivers & people with FASD to provide input before Aug. 20 on what kind of FASD research is needed in Canada BEFORE the event they are hosting, “FASD Research: Learning Together” in Regina Aug. 29-30.

The insights from your community group will help directly inform the discussions that will take place at the “FASD Research: Learning Together” workshop being held at the end of August at the University of Regina. This workshop is being hosted by Canada FASD Research Network (CanFASD) in collaboration with the Family Advisory Committee. The Family Advisory Committee has a dual mandate of informing researchers of research priorities for parents and caregivers and communicating the results of FASD research to parents, caregivers and individuals with FASD in a clear, easily accessed and understood manner.

The workshop in August will bring together a group of parents and researchers and will be organized around the findings from a national survey and community groups like the one you are hosting. The workshop will focus on key issues raised by participants and caregivers/parents across Canada and will highlight current research and strategies to provide effective supports for families and individuals with FASD across the lifespan.

As this workshop is being held in Regina, we want to collect as much feedback as possible to inform the discussion. We hope you can host community meeting(s) with parents/caregivers in your area and collect their feedback and send it to Dorothy Reid by August 20, 2016. This feedback will directly inform the discussions at the August workshop. CanFASD will report back to each community group after our meeting in August, suggesting a plan to take action on the key issues that arose from the Regina workshop.

To assist you in planning the community group discussions we suggest the following:

1) Please send participants the following link about CanFASD and the Family Advisory Committee prior to your meeting: www.canfasd.ca

2) Identify a quiet place to have a discussion so that you can easily hear one another.

3) Organize your discussion around the key questions (see attached). The questions are meant as a guide to generate comparable discussions between participants.

4) Towards the end of your meeting, please confirm with your group the key themes you heard for each question and jot down those key points in the notes section.

5) Confirm with your group if they would like to be added to our email list for updates after the August workshop in Regina.

6) Email your notes to Dorothy Reid (reidwellness@gmail.com) by August 20, 2016 including contacts to add to our outreach email following the Regina workshop.

KEY QUESTION FOR GROUP DISCUSSION

1) What kind of FASD research has been the most useful for you in the past?

Notes:

2) What aspects of living with FASD would you like to see more research done on?

Notes:

3) What would be your ideal way of receiving FASD research results (example: email updates, podcasts, hard copy newsletter, etc.)?

4) What kinds of strategies and supports for people with FASD would you most like to see researched?

5) What do you think are the most pressing concerns for people with FASD as they age that we might explore through research?

6) What do you see as emerging physical or health related issues for people with FASD?

Number of participants: _____ Discussion(s) hosted by: ____________________

Contact information for Host (email): _____