Romanian man calls Canada's immigration policy outdated

Radu Bogdan wants to bring his family to N.B. but his son, who has Down Syndrome, may be rejected

from CBC News:
A temporary foreign worker from Romania says immigration policies in Canada are out of date and discriminate against people with disabilities.
Radu Bogdan has been working in Richibucto as a production line operator at Imperial Sheet Metal since 2011.
He has applied for permanent residency and hopes to bring his wife and two young children to Canada, but in a recent letter from Citizenship and Immigration Canada he was told his son may not meet the requirements.
Bogdan's 6-year-old son has Down Syndrome.
"My son teaches how to love every day," Bogdan said. "He's a wonder, he's a miracle for us."
The letter from CIC says in part, "Your family member...is a person whose health condition might reasonably be expected to cause excessive demand on social services in Canada."
The average cost for health and social services in Canada is set at $6,285 per year, per person.
CIC estimates over the next five years special education costs alone for Bogdan's son would be more than $53,527 which exceeds that annual allocation.

Adults with disabilities get inadequate health care, Canadian study finds

By Andrea Gordon from the Star:
Adults with autism, Down syndrome and other developmental disabilities face more physical and mental health problems but are less likely to get the care they need than other adults, a new Ontario study has found.

The research, released Tuesday, is the largest examination of its kind and paints a worrisome picture of how this “silent minority” — often unable to communicate their distress — is served by the health care system.

“It’s hard for them to make their needs known,” said Yona Lonsky, lead author of the Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario.

And, what’s more, the care these adults receive often does not meet health-care guidelines for this cohort, she added.

While a higher proportion of these adults live in poorer neighbourhoods and are diagnosed with chronic diseases, they face larger gaps in services.

They more often end up in emergency departments in crisis. But they are less likely to visit their family physicians for regular checkups or standard preventive care such as cancer screening.

Almost half are prescribed multiple drugs, most commonly for mental health and behavioural problems, the study found. Twenty-two per cent take five medications simultaneously, and some in potentially dangerous combinations.

And while a team approach is recommended to co-ordinate care between physicians, nurses, occupational therapists, psychologists, social workers and other care providers, only one in five adults with a developmental disability is being treated by this type of health team.

The study was conducted by the Institute for Clinical Evaluative Sciences (ICES) and the Centre for Addiction and Mental Health (CAMH). A summary was released Tuesday and the full report will be available in December.

The findings didn’t come as a surprise to Roger Oxenham of Toronto, whose daughter Rachel, 26, has a developmental disability and bipolar disorder.

Rachel went through a crisis as she entered her 20s, a period when many young adults like her are most at risk of falling through the cracks as they “age out” of pediatric care and children’s services.

In one year, she ended up in emergency rooms around the city 18 times, arriving in distress and fearing she would harm herself. It wasn’t uncommon for Rachel to wait 12 to 14 hours, alone and upset, before being admitted to the psychiatric ward, where she would be medicated and released, only to start the cycle again.

While her own physician and emergency staff provided good care, says Oxenham, there was no communication between caregivers. The strategy seemed to be “patch her up and send her out until the next time.”

He says the system needs to connect hospitals, parents, family doctors and other therapists who work with patients and understand their complex needs.

That approach is critical, adds Lonsky, a scientist clinician with CAMH and director of the Health Care Access Research and Developmental Disabilities (H-CARDD) program. She says initiatives are also needed to empower patients, parents and caregivers advocate for themselves.

The Atlas study is the first to track health needs and treatment for this often overlooked group — estimated at 66,000 adults under 65 in Ontario. Too often they become invisible after moving from the care of pediatricians and parents into adulthood, particularly the majority who live with mild disabilities. As a result their health problems and needs are overlooked.

Researchers had to mine data from social services to get an accurate picture of the numbers of adults with developmental disabilities and their health care needs.

Canadian play features 9 actors with Down syndrome

from CTV News:

What’s it like to live with Down syndrome?

That question and others about the meaning of human intelligence and what makes lives worthwhile are answered in heart-wrenching ways in the new play, “RARE.”

Written and directed by acclaimed Canadian playwright Judith Thompson, “RARE” debuted at the Tarragon Theatre on July 5^th as part of the Toronto Fringe Festival. The surprise hit racked up sell-out performances and will now run from August 1 – 3 as part of the Best of Fringe.

That success is owed, in large part, to Thompson’s nine stars, all of whom have Down syndrome.

Ranging in ages from 22 to 37, Thompson’s performers and co-creators share the story of their lives in this unusual production.

Some complain about little things, such as drivers who don’t know where they’re going on the road. Others talk about the pain of loss, unfulfilled dreams and living with relatives who are addicted to drugs. But throughout it all, Thompson’s cast reminds audiences that they are human beings, just like anyone else, and deserve respect.

“I told my cast ‘You are educators. You are teaching me and the audience here,’” Thompson said on Tuesday, appearing on CTV’s Canada AM.

One such educator includes performer-writer Nick Herd, who gives a powerful rendition of William Blake’s poem, “Tiger,” during the show.

“I’ve gone through a lot of things over the years,” Herd said on Tuesday on Canada AM.

“When I was just a baby I was discriminated because I was different,” he said.

Shortly after Herd’s birth, a nurse told his mother that she did not have to keep the child. But Herd’s mother chose to keep her son.

“In ‘RARE’ we share our life experiences,” said Herd.

“We are rare. We’re unique. We stand together,” he said.

Each year approximately 500 babies with Down syndrome are born in Canada.

Up to 97 per cent of all pregnant women who learn that they are carrying fetuses with Down syndrome through prenatal testing choose to terminate their pregnancies.

That fact is poignantly addressed in “RARE” when 23-year-old performer Krystal Nausbaum reads an open letter to female audience members who may have learned that they are carrying a Down syndrome child.

“Never give up and always keep on going,” Nausbaum reads out.

“People who have Down syndrome are very talented and would love to be raised by you. Be brave,” she says.

Thompson hopes that this message, as well as the play’s vibrant stars, will help audiences see those living with Down syndrome in powerful new ways.

“All people are beautiful. That’s the message. We need to respect who they are,” said Thompson.

See a video on this topic here:

http://canadaam.ctvnews.ca/canadian-play-features-actors-with-down-syndrome-1.898956#.UBk-w-3CtjE.link

Fantastic Speakers lined up for the CDSS Conference 5/18-5/20

From the CDSS:

The 2012 Canadian Down Syndrome Conference is May 18-20 in Toronto.

Remember to register for the conference if you haven't yet - spots are filling up fast. We hope to see you there!

• You can also download the 2012 Conference Preview brochure. Included in the brochure is more information about the conference, including a short list of sessions!
• Download it here: 2.3 MB (PDF file)
• If you have any questions or concerns please email lyng@cdss.ca

Keynote and Endnote Speakers

Our Keynote Speaker: Marlee Matlin

Academy Award winning actress, author, mother, and advocate.

Marlee Matlin received worldwide critical acclaim for her motion picture debut in Paramount Pictures’ Children of a Lesser God, earning her the Academy Award for Best Actress. At age 21, she became the youngest recipient of the Best Actress Oscar, making her one of only four actresses to receive that honour for a film debut. In addition to the Oscar, Matlin was honoured by the Hollywood Foreign Press Association with the Golden Globe Award for Best Actress in a Drama.

Passionate about children, she has also appeared in a number of educational and children’s programs. She can currently be seen starring in Disney’s highly acclaimed Baby Einstein DVD series, teaching sign language to infants and toddlers.

Matlin currently serves as a National Celebrity Spokesperson for the American Red Cross, encouraging Americans to donate blood. She has worked on behalf of closed captioning and was instrumental in getting Congress to pass federal legislation requiring all televisions manufactured in the United States be equipped with closed captioning technology. She also serves on the boards of a number of charitable organizations including Easter Seals, The Children Affected by Aids Foundation, as well as those charities which primarily benefit children. In 1995, Matlin served as Chairperson for National Volunteer Week and was honored in a White House Rose Garden ceremony by President Clinton. In 2006 Matlin was honored by AOL as “Chief Everything Officer,” highlighting the important contributions of mothers, both home and work environments.

Our Endnote Speaker: Dr. Dave Williams

Astronaut, medical doctor, and parent advocate.

With a passion for healthcare and risk management, prior to entering the Canadian Space Agency's program, Dr. Dave Williams worked as an emergency room doctor and later as director of emergency services at Sunnybrook Health Sciences Centre in Toronto. Formerly the director for the McMaster Centre for Medical Robotics, where he led a team dedicated to developing innovative technologies to assist the development of local and remote patient care. July 2011 marked a new journey for Williams as he became President and Chief Executive Officer of Southlake Regional Health Centre.

Dave Williams joined an exclusive club when he blasted into space aboard the Space Shuttle Columbia, and again on Shuttle Endeavour where he walked out into the great beyond. Having also lived and worked in the world's only underwater ocean laboratory, he became Canada's first dual astronaut and aquanaut.

A true Canadian hero, Williams is down-to-earth with a compelling and unique approach to peak performance, environmental stewardship, our futures and risk management.

2012 Speakers and Sessions

Sessions in Red are Self-Advocate Friendly

Sessions in Blue are Self-Advocate Only

1. Sara Bingham: Enhancing Language and Lessening Frustration
2. Emily Bolyea-Kyere: An Introduction to the Best Buddies Friendship Program
3. Patrice César: Film Presentation: Trisomie 21 Défi Pérou (translated title: Up with Downs: The Peruvian Challenge)
4. Dr. Brian Chicoine: Promoting Health for Adolescents and Adults with Down Syndrome
5. Jim Cochrane: Step by Step- A Lifetime of Transitions 
6. Joe Dale and Mark Wafer: Employment Options for Adults Who Have a Disability
7. Maria Dellapina, Specs 4 Us: Children's Vision Awareness for Parents and Guardians
8. Sujeet Desai: My Story: Improvising Disability with Multiple Intelligence
9. Dr. Koch: Whats Next: Politically, Practically, and Socially (Bioethics of Prenatal Screening)
10. Laura LaChance: Dental Care and Down Syndrome
11. Barbara Laird: Before Behavior Begin
12. Arleigh Luckett and Kristy Simons: Potty Time- A Whole Body Approach to Toilet Learning
13. Marlee Matlin: Self-Advocate Meet & Greet 
14. Dr. Dennis McGuire: Promoting Strengths and Creative Potential in Persons with Down Syndrome
15. Mercer Family: Leaving Home
16. Karen Meredith Blott: Getting What You Want: Why You Need to Consider Personality
17. Lorraine Paquin, Jullian Paquin, and Nicole Paquin: Advocacy and Action
18. Dr. Gordon L. Porter, CM: Making the Case for Inclusion: Strategies for Parent Activists
19. Dr. Mary Pothos: Medical Issues in Children with Down Syndrome: Everything You Ever Wanted to Know and More
20. Erin Sheldon: Using Technology for Inclusion
21. Sarah Strathy and Maryanne Bruni, Silver Creek Preschool: Total Communication Approach in an Integrated Pre-school
22. Catherine St. Cyr: The Benefits of the Montessori Experience for Children with Down Syndrome
23. Surrey Place Centre: Caregiver Tools and Strategies for the Health of Boys and Men with Down Syndrome
24. Surrey Place Centre: Caregiver Tools and Strategies for the Health of Girls and Women with Down Syndrome
25. Surrey Place Centre: What You Need to Know… All About Your Health 
26. Voices At The Table Advocacy (VATTA) Committee: Down Syndrome: The Evolution