intervention...we’ve all drifted to the four corners of the planet, but we can still regain those...

Vol. 37 No.1Fall/Winter

2013/14

Intervention

Fall /Winter 2013/14 - PAGE 3PAGE 2 - Fall 2012

IN THIS ISSUE...A Message from the President pg 4

A Message from the Executive Director pg 5

CDBA Bowl-a-thon pg 6

Deafblind Awareness Month celebrated in June pg 7

CDBA National Intervention Fund & Avery’s “Disney Dance the World” experience once in a lifetime pg 8

Deafblind International News pg 9-10

Blind curlers slip, slide, sweep into competition pg 11

Golf Lets Me See Again pg 12-13

2013 “Lend-a-Hand” Charity Golf Classic pg 14-15

A Sincere Thank You & Understanding the Registered Disability Savings Plan pg 16

Ontario Chapter pg 17

Saskatchewan Chapter pg 18-20

Alberta Chapter & BC Chapter pg 21

New Brunswick Chapter pg 22-23

Transitioning to Independence - A Human Right pg 24-25

Mary Guest, founder of Sense’s Usher syndrome programme, has passed away & Follow up underway to the Late Manifestations of Congenital Rubella Syndrome in Canada Survey pg 26

Canadian Deafblind Association 2013/14 Board of Directors & Staff Contacts pg 27

Upcoming Conferences10th DbI Acquired Deafblindness Network Conference Planning is underway for the 10th DbI Acquired Deafblindness Network Conference scheduled for Belfast, Northern Ireland November 04-07, 2014. Watch for more information about this conference to be posted on the DbI website (www.deafblindinternational.org), on Facebook (www.facebook.dbiint) and in the 52nd edition of DbI Review coming out early in 2014.

16th DbI World Conference (2015) The 16th DbI World Conference on Deafblindness is scheduled for May 25-30, 2015 in Bucharest Romania. The conference location is the Hotel JW Marriott, Bucharest. The conference is being jointly sponsored by Sense International (UK). Former Sense-UK CEO Tony Best was appointed as the Chair of the Conference Scientific Committee. Watch the DbI website in the coming weeks for more information on this conference.

CDBA is currently looking for articles, poems, commentary or “Letters to the Editor” with Canadian content for publication in a future issue of Intervention magazine. We also want to know what topics would interest you, whether you happen to be a parent of a person who is deafblind; an Intervenor; or a professional working in the field of deafblindness .

Let us share your unique experiences or ideas with others who would surely benefit. We would love to hear from you by email [email protected]

12th International CHARGE Syndrome Conference

Host: CHARGE Syndrome Foundation

Date: July 30-Aug 2, 2015

Location: Chicago Renaissance

Schaumburg Hotel

Chicago, Illinois

www.chargesyndrome.org

DO YOU HAVE A STORY TO TELL OR ARTICLE TO SHARE?

A Message from Wayne Turnbull…

Winter has captured the west creating four foot drifts. Night fall remains my outlook into the past, I am bundled up in fleece from head to toe staring through my own darkness along with the darkness of low cloud cover.

My mind senses the vast universe that holds all of us in the rapture of her multitude of stars representing Christmas lights. Memories just leap to life; on the courts, the gridiron, circling the track or standing beneath the tall posts on the pitch. Casting the Doc Spratly toward a dark pool, hand stripping it until the inevitable strike. Dancing with all the fabulous gals who attended school, or cheek to cheek at the Riviera.

How many of you remember “call out the order, loud and clear; MORE BEER”.

We’ve all drifted to the four corners of

the planet, but we can still regain those moments that binded us as friends.

Life can turn on a dime, tragedy is just a shadow behind everyone; so look forward, enjoy all the wonder yet to behold.

Tears freeze as they attempt to run down my cheeks recalling the smiles, the laughter of an off colour joke or a slap on my back in thanks for some insignificant event. Lets all recall the good times we shared.

Once introduced you became a part of me, reach out to others and pass along this Message:

GOOD HEALTH IN THE NEW YEAR. We are so blessed.

Wayne Turnbull Wayne is a previous CDBA National Board member from Alberta.

Fall /Winter 2013/14 - PAGE 5PAGE 4 - Fall/Winter 2013/14

Musings From the National Executive Director

A Message from the President

Tom McFaddenCarolyn MonacoFor this edition of Intervention Magazine, I want to especially welcome the many new members from the past year who will be reading our prized publication for the very first time.

As we say goodbye to the holiday season, we are all anticipating a return to our work routine with renewed focus. CDBA is no different as we reflect, as we should, on what we have accomplished and seek to address the many challenges and opportunities that surely the coming year will bring. In fact, our face-to-face AGM weekend meetings held on September 27-30 in Brantford, Ontario gave us all a chance to do just that!

I can’t help but wonder what kind of organization CDBA would be if it didn’t have its legion of dedicated volunteers - both families and friends, its many generous donors and, yes, its corporate supporters like Marsh Canada? Would its annual “Lend-a-Hand” golf fundraiser and inaugural awareness “Bowl-a-thon” be as successful if there were no volunteers ready and eager to lend their support? No, they would not! Would our organization and its provincial Chapters be able to prosper, or even survive, without the commitment of volunteer Board and working committee members? It would be tough!

In this light, it was important for us as Canadians to join in the celebration of the 71st annual National Volunteer Week last April. We are a kinder, gentler, more benevolent, more empathetic society because of the many individuals who selflessly donate their time and energy to support many worthy causes. We applaud each of you. You know who you are.

One of my highlights of the year was the opportunity to present the CDBA National Award for Excellence in Field Placement to Heather McKinnon (pictured). This annual award is presented to a graduating student in the Intervenor Program at George Brown College who has demonstrated outstanding achievement in the field placement component. A second graduating student from the same program, Kelby Balch, was presented by Carolyn Monaco, CDBA National President with the Andrew

Love Memorial Award of Excellence, having demonstrated outstanding ability in working as an Intervenor with a child who is deafblind.

In recent months, CDBA has proactively continued with new branding and marketing initiatives that have provided a consistent “look and feel” to our National website, our electronic and hard-copy publications, our print materials and promotional tools - all of which are aimed at increasing our visibility and fostering awareness of the world of deafblindness. In this issue, you will read about our provincial Chapters who work so diligently to meet the multiple service needs of CDBA members, clients who are deafblind and their families.

Also highlighted in this issue are National’s annual “Lend-a-Hand” Charity Golf Classic and inaugural “Bowl-a-thon”, both of which managed to draw considerable attention to Deafblind Awareness Month in June. We have again profiled work done by our international partners at Deafblind International (DbI). As well, two articles from the world of sport include a piece by David Meador of Golf Digest entitled “Golf Lets Me See Again” and another by Joel Eastwood of the Toronto Star highlighting how communication is everything for visually and hearing impaired curlers - special stuff indeed!

Throughout the year CDBA participated in consultation meetings with Human Resources Social Development Canada (HRSDC) through their Office for Disability Issues (ODI) along with representatives of 16 other national organizations who traditionally have received direct funding grants. These organizations including CDBA, are facing an enormous “change challenge” as the transformation of the Disability component of the Social Development Partnerships Program (SDPP-D) becomes a stark reality. Over the next 3 years, specific aspects of SDPP-D will be changed so it can better address disability issues and maximize the impact of federal funding:

Although aspects of the SDPP-D began this past April, we have been assured that it will continue to exist with the same objective –

namely, to work in partnership with CDBA National and all the other social not-for-profit organizations to improve outcomes for people with disabilities.

As year 3 of my involvement with CDBA national draws to a close, I can look back with respect and admiration upon all those volunteers, Intervenors, educators, families and persons with deafblindness with whom I have crossed paths, and am truly grateful for the opportunity to be a part of such a wonderful and passionate group. Please know that articles are always welcomed, comments appreciated and suggestions thoughtfully considered. I leave you with this thought:

“Never give up on a dream just because of the time it will take to accomplish it, as the time will pass anyway.” ~ Author unknown

Happy New Year! As another year begins one of my resolutions for 2014 will be to make increased use of some of the wonderful materials and educational opportunities that are available within the provincial, national and international communities of deafblindness.

During the past couple of years there has been a significant increase in the availability of informational materials such as books, magazines, DVD’s, videos, webcasts, articles and online courses all related to deafblindness. These materials have provided us with the opportunity to educate ourselves on the most up-to-date information on topics such as interaction and communication strategies, etiologies, recreation and leisure activities and service provision to name just a few.

Not only do we have the right to be informed, we have the responsibility.Whether you are in the early stages of learning about deafblindness and intervention or have years of

knowledge and experience, it is crucial that, in order to meet the needs of individuals, families or organizations, we stay as current and informed as possible. Fortunately doing this is a little less challenging than ever before.

The reality is that some of the larger professional development opportunities that we have been accustomed to in the past, such as our previous seven Canadian conferences, have not taken place in recent years largely due to the increased costs of organizing such events. However, technology and increased ties to our international partners has resulted in the availability of materials that are of significant interest and value to family members, Intervenors, teachers, therapists and individuals who are deafblind.

Within CDBA there has come a realization that there are so many more opportunities for us to share what we know and what we are doing and to develop informative materials. We presently have a national committee working on

developing this concept and look forward to sharing more information on this in future editions of “Intervention” magazine and on our website www.cdbanational.com.

It would be my sincere hope that in the not-so-distant future we will all be able to meet up at a Canadian conference to share our triumphs, our best practices and our challenges with each other face-to-face. In the meantime I hope you will take advantage of learning opportunities provided by some of the resources I have shared below, if you haven’t already.

Heather McKinnon receiving 2013 George Brown College Award for Excellence in Field Placement. I (Tom McFadden) presented the award on behalf of CDBA National on April 19, 2013 at the GBC Grad ceremony.

Websites:Visit these websites often as new additions are being made regularly.1. Deafblind International: www.deafblindinternational.org 2. Perkins: www.perkins.org (excellent webcasts) 3. Sense:www.sense.org.uk 4. Dr Jan van Dijk: http://www.drjanvandijk.org5. National Centre on Deaf-Blindness: www.nationaldb.org

Books1. An Exceptional Fellow: A Father’s StorySvein Olav shares the powerful story of his now 35 year old son Torgeir who has CHARGE Syndrome and his family. This compelling story has lessons for us all. Available from George Brown College, Intervenor Program $25.00 Contact Betty Jean Reid at [email protected] to purchase2. A Good Senior Life With Dual Sensory Losshttp://www.nordicwelfare.org/Publications/Inspirationshefter/A-Good-Senior-Life-with-Dual-Sensory-Loss/3. Life Adjustment http://www.nordicwelfare.org/PageFiles/5593/168730_Engelsk.pdf

Online Courses1. CDBA Ontario Chapter Contact Sue Hall at [email protected]://www.cdbaontario.com/elearning/index_e.php


“Lend Hand”

For Members, Family, Friends & Supporters of CDBA National to help celebrate

Sunday, June 23, 2013

TIME 12:30 pm Registration

1:00 pm Start REGISTRATION $20 Adults $10 Children 12 & under

$3 bowling shoe rental

Free parking 2 GAMES Rock ’n Roll Special Effect Lighting

Complimentary Pizza & Soft Drinks

Door Prizes

invites you to the...

Burlington Bowl 4065 Harvester Road Burlington, Ontario www.burlingtonbowl.com

For more information and to register by Wed. June 19th

Call: (905) 319-9243 or T/F (866) 229-5832 Email: [email protected]

www.cdbanational.com

Burlington, Ontario (June 2013) – A fun-filled afternoon was experienced by more than 30 deafblind consumers, their Intervenors friends and family members who came out in support of CDBA National’s “Lend-a-Hand” Bowl-a-Thon. This first-ever awareness event was to help celebrate Deafblind Awareness Month in the province of Ontario during the month of June.

Bowlers experienced rock ‘n roll music, special effect lighting, and several nice door prizes.

Everyone involved wholeheartedly agreed that we should do this again in other communities throughout the province

Deafblind Awareness Month is celebrated each year in June to mark the month that Helen Keller was born. Helen was indeed a visionary, and is without a doubt the most famous person in the history of deafblind advocacy. Rotary Cheshire Homes and the Canadian Helen Keller Centre sponsored the 11th annual “Junefest” in Toronto, Ontario, an awareness festival that recognizes and celebrates June as Deafblind Awareness Month in Ontario. CDBA Ontario Chapter, along with several like-minded organizations and agencies, hosted an information booth to raise awareness about the disability of deafblindness and the services and resources that are available to deafblind consumers

and their families.

CDBA Ontario Chapter held a flag-raising ceremony at Brantford City Hall to honour the City’s proclamation of June as Deafblind Awareness Month. This was the 6th year in a row that the city of Brantford has honoured its residents who are deafblind in this very visible fashion. CDBA Ontario Chapter kicked off its Deafblind Awareness Month activities with a recognition night at a Toronto Blue Jays game at the Rogers Centre in Toronto.

At the annual Legislative breakfast in Fredericton, New Brunswick as part of Deafblind Awareness Week, CDBA New Brunswick was presented with one of 4 awards for “dedication and commitment to raising awareness and providing services for individuals who are deafblind.”

Awareness “Bowl-a-thons” were held across the country

hosted by CDBA National as well as Chapters including BC

and Saskatchewan.

Bill 125 2000

An Act to proclaim the month of June as Deafblind Awareness MonthPreamble

Deafblindness is a unique disability that incorporates the sensory loss of both sight and hearing. Persons with this disability experience extreme isolation and the inability to access the services and information which most of us take for granted.

June is the birth month of Helen Keller, a person who was deafblind, known around the world for her perseverance and achievements, and an inspiration to the deafblind community. It is appropriate during the month of June to celebrate the achievements of persons who are deafblind, and to recognize that increased public awareness of this disability is crucial to increase opportunities for those who live with it.

Therefore, Her Majesty, by and with the advice and consent of the Legislative Assembly of the Province of Ontario, enacts as follows:

Deafblind Awareness Month

The month of June in each year is proclaimed as Deafblind Awareness Month.

Commencement

This Act comes into force on the day it receives Royal Assent.

Short title

The short title of the Act is the Deafblind Awareness Month Act, 2000.

Deafblind Awareness Month celebrated in June

CDBA Bowl-a-thon

Deafblind Awareness Month posters can be downloaded from the CDBA website


CDBA ChaptersCDBA National Of ceUptown Centre14 - 1860 Appleby LineBurlington ON L7L 7H7(905) 319-9243 (B)(866) 229-5832 (TF)(905) 319-2027 (F)E-mail: [email protected]

British Columbia Chapter227 – 6th StreetNew Westminster, BC V3L 3A5(604) 528-6170 (B)(604) 528-6174 (F)E-mail: [email protected]

Alberta ChapterP.O. Box 89006Calgary, AB T2Z 3W3(780) 425-9444 (B)E-mail: [email protected]

Saskatchewan Chapter83 Tucker CrescentSaskatoon, SK S7H 3H7(306) 374-0022 (B)(306) 374-0004 (F)E-mail: [email protected]

Manitoba Chapter2307 Devon StreetWinnipeg, MB R2G 0C4(204) 949-3730 (B)(204) 949-3732 (F)E-mail: [email protected]

Ontario Chapter50 Main StreetParis, ON N3L 2E2(519) 442-0463 (B)(877) 760-7439 (TF)(519) 442-1871 (F)E-mail: [email protected] Brunswick Chapter408-212 Queen StreetFredericton, NB E3B 1A8(506) 452-1544 (B)(506) 451-8309 (F)E-mail: of [email protected] www.cdba-nb.ca

All people who are deafblind will live rich meaningful lives

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JUNE IS DEAFBLIND AWARENESS MONTH

CDBA Chapters

CDBA National Of ce

Uptown Centre14 - 1860 Appleby Line

Burlington ON L7L 7H7

(905) 319-9243 (B)

(866) 229-5832 (TF)

(905) 319-2027 (F)

E-mail: [email protected]


British Columbia Chapter

227 – 6th Street

New Westminster, BC V3L 3A5

(604) 528-6170 (B)

(604) 528-6174 (F)


www.cdbabc.caAlberta Chapter

P.O. Box 89006Calgary, AB T2Z 3W3

(780) 425-9444 (B)


Saskatchewan Chapter

83 Tucker Crescent

Saskatoon, SK S7H 3H7

(306) 374-0022 (B)

(306) 374-0004 (F)

E-mail: [email protected] Chapter

2307 Devon Street

Winnipeg, MB R2G 0C4

(204) 949-3730 (B)

(204) 949-3732 (F)


Ontario Chapter

50 Main StreetParis, ON N3L 2E2

(519) 442-0463 (B)

(877) 760-7439 (TF)

(519) 442-1871 (F)


www.cdbaontario.comNew Brunswick Chapter

408-212 Queen Street

Fredericton, NB E3B 1A8

(506) 452-1544 (B)

(506) 451-8309 (F)

E-mail: of [email protected]

www.cdba-nb.ca

All people who are

deafblind will live

rich meaningful lives

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JUNE IS DEAFBLIND

AWARENESS MONTH

CDBA Chapters

CDBA National Of ce

Uptown Centre

14 - 1860 Appleby Line

Burlington ON L7L 7H7

(905) 319-9243 (B)

(866) 229-5832 (TF)

(905) 319-2027 (F)



British Columbia Chapter

227 – 6th Street

New Westminster, BC V3L 3A5

(604) 528-6170 (B)

(604) 528-6174 (F)


www.cdbabc.ca

Alberta Chapter

P.O. Box 89006

Calgary, AB T2Z 3W3

(780) 425-9444 (B)


Saskatchewan Chapter

83 Tucker Crescent

Saskatoon, SK S7H 3H7

(306) 374-0022 (B)

(306) 374-0004 (F)


Manitoba Chapter

2307 Devon Street

Winnipeg, MB R2G 0C4

(204) 949-3730 (B)

(204) 949-3732 (F)


Ontario Chapter

50 Main Street

Paris, ON N3L 2E2

(519) 442-0463 (B)

(877) 760-7439 (TF)

(519) 442-1871 (F)


www.cdbaontario.com

New Brunswick Chapter

408-212 Queen Street

Fredericton, NB E3B 1A8

(506) 452-1544 (B)

(506) 451-8309 (F)

E-mail: of [email protected]

www.cdba-nb.ca

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DbI European Conference (Lille, France)Over 300 attendees, representing 32 countries attended the 8th DbI European Conference in Lille France, August 24-28. Attendees no doubt returned to their home countries with a better understanding and appreciation of the varied identities of people with deafblindness and of the commonalities within this rather complex disability group of individuals.

The general consensus was that the Scientific Committee chaired by Jacques Souriau and represented by experts from France, Austria, Scotland, Greece, Bulgaria, Denmark and Sweden, built an incredibly successful conference around the theme “Identities and changes-Commonalities across deafblindness”.

Congratulations to the presenters from 19 different countries whose 10 high caliber plenary lectures together with the 84 workshop presentations made this conference a resounding success.

Congratulations also to the local planning committee headed up by Valérie Taggiasco, Présidente de l’Association Nationale pour les Personnes SourdAveugles et

sourdes malvoyantes (ANPSA), for this smooth running event that was well located in the Lille Grand Palais.

Watch for the next edition of DbI Review coming out in January 2014 for further information on this successful conference. We expect the conference proceedings to be published on the DbI website in the coming months. Watch for further announcements!

Organization Updates and ActivitiesDbI Board

The DbI Board met in Lille France on August 23, 2013. The Board welcomed new member Kaye Collard who replaced the retired member from Able Australia, Celestine Hare. The Board announced that Aubrey Webson was replacing Barbara Mason as the representative from Perkins School for the Blind, USA. Knut Johansen, a Board member from Norway

was appointed as a new member of the DbI Management Committee (ManCom) to take on the new role of Development Officer.

The Board approved the establishment of a Research Officer position as an additional member of the ManCom. Together the Board and ManCom will be recruiting an individual to meet the guidelines established for this new position.

The next meeting of the DbI Board is scheduled prior to the Acquired Deafblindness Network (ADbN) Conference in Belfast Ireland during the first week of November, 2014.

DbI Management Committee

The DbI ManCom met in Lille France on August 22, 2013 prior to the Board meeting and following the Board meeting on August 24. The ManCom welcomed Knut Johansen to the group in the new role as DbI Development Officer.

DbI Annual General Meeting

The AGM representing the program year 2012 was held in Lille France on August 23, 2013. The Annual Report of 2012 can be found on the DbI website.

DbI Nominations Process for the period 2015-2019

Board member Cathy Proll was appointed as the Chair of the

Deafblind International Newsby Stan Munroe, DbI Information Officer

PurposeThe purpose of this national fund is to assist Canadians who are deafblind with funding to purchase emergency intervention services, materials, equipment or access to programs that will enhance their quality of life as an individual with deafblindness. All applications are considered on an individual basis.

1. for emergency purposes when no other alternative source of funding is available,

2. to supplement other sources of funds for individuals confined to a hospital and

3. to supplement other sources of funds used for specialized education or recreation programs,

4. for specialized equipment

5. for other special circumstances.

The funds provided are short term and are not intended to replace funding which may be otherwise available.

CriteriaPersons Qualifying1. have been identified as deafblind

2. Must be a member in good standing of CDBA.

How to ApplyAn Application for Assistance Form can be found on the CDBA National website www.cdbanational.comMail, fax or scan and email this form to:

CDBA National1860 Appleby Line, Suite 421,Burlington ON L7L 7H7(905) [email protected]

CDBA National Intervention Fund

2013 DbI Management Committee. Stan Munroe (far left); Carolyn Monaco (4th from right)

2013 DbI Board of Directors; Stan is front row left; Carolyn is front row middle

Con page ontinued on Page 10.

My name is Avery Williams. I am a 16 year old girl who was born with a rare childhood eye cancer called Retinoblastoma. I lost my left eye to the cancer, I have very minimal vision in my right and developed bilateral hearing loss from the chemotherapy. I was identified as deafblind when I was 7 years old. I am currently in grade 11 and hope to pursue Performing Arts in university. My passions are dancing, singing and acting. This summer, July 2013 with the amazing support of The Canadian Deafblind Association National and other organizations, I was granted an amazing opportunity to travel with my dance production studio, XKLUSIV, to perform at Disney’s “Dance The World” in Orlando Florida.

I would say that this was the opportunity of a lifetime for a teenage dancer like myself. To be able to do what I love with the people I love and be able to overcome many challenges to accomplish this dream, was truly a blessing.

The experience is almost indescribable; from dress rehearsals, to fittings, practicing with the Disney dance coordinators, to dancing in the rain was amazing! It poured every day, even the day we performed along the parade route in Magic Kingdom...and even that was simply magical. To see hundreds of people lined the parade route in the pouring rain, cheering us

on was incredible. This is an experience I will treasure for the rest of my life.

Thank you so much for supporting me along

my journey. I am truly humbled and grateful for the generosity of The Canadian Deafblind Association National for aiding me to realize a fantasy. THANK YOU

Avery’s “Disney Dance the World” experience once in a lifetime

Fall /Winter 2013/14 - PAGE 11PAGE 10 - Fall/Winter 2013/14 Fall 2013 - PAGE 11

Blind curlers slip, slide, sweep into competition

by Joel Eastwood, Toronto Star Staff Reporter – Reprinted with permission – Torstar Syndication Services

Taras Kuzminkski who is deafblind at the Royal Canadian Curling Club on Oct. 11, 2013.

Lloyd Pike, Ann LaFontaine, Craig Sherman and Ida Fracasso at the Royal Canadian Curling Club on Oct. 11, 2013.

Ida Fracasso lowers herself into the hack and concentrates on her shot.

At the opposite end of the sheet of ice, Ann LaFontaine, Fracasso’s captain - her skip, in curling lingo - raises a small pair of binoculars to her face.

Fracasso slides out and releases her rock. It rumbles down the sheet with the soft roar of granite on ice, bearing down on an opponent’s stone, colliding with a sharp crack.

“That’s the sound you’re waiting for, “ Fracasso says, triumphant.

That sound is everything to Fracasso, because she cannot see the shot she just made.

Fracasso is blind. She is playing with the Toronto Blind Curling Club, a group of about a dozen visually impaired players who have just started the season at the Royal Canadian Curling Club.

Kikuye Inouye, a volunteer coach with the league, is not visually impaired, “although my skip calls me that sometimes, “ Inouye jokes.

She joined the group two years ago to help train new curlers, as most had never played the sport before.

“The learning curve for me was figuring out what each person can see individually, “ Inouye said.

There is no one-size-fits-all definition of visual impairment, and the players in the league have a range of abilities - some lack peripheral vision, others are almost completely blind.

Two of the curlers are deaf as well as visually impaired, including Taras Kuzminski. He had never played the sport before, but had seen it on TV before he lost his sight.

On the ice, Kuzminski is accompanied by an “intervenor,” who explains the shots to him using sign language and guides Kuzminski when he is sweeping by running along behind him with a broom on his shoulder, helping him keep pace with the moving rock.

“It’s almost a little comical, “ LaFontaine says. “But it works.”

Fully sighted guides are also on the ice to aid the other curlers.

Curling is a game of communication, relying on shouts to relay commands - all those screams of “Hurry hard!” serve a purpose. With blind curling, communication becomes even more essential.

As skip, LaFontaine has to explain the shot she wants from one end of the ice to the other using hand signals.

“I have to communicate that to the guide, and the guide has to communicate that to the shooter and

to the sweepers, “ LaFontaine says.

And as the rock thunders down the ice toward her, the sweepers running alongside have to shout what direction it’s heading in because she can’t see the oncoming stone until it has almost reached her.

In April, the club will host the blind curling provincial championships. There are eight cities in Ontario with blind curling leagues, and they play off every year for the right to represent the province in Ottawa at the national championship.

In addition to all the usual logistics of organizing a tournament, the blind championship brings extra challenges, such as arranging transportation between the hotel and the club because the players cannot drive themselves.

Club members have been fundraising to support the league, selling chocolate and even holding a golf tournament - curling is not the only blind sport in Toronto. During the curling off-season, Kuzminski stays active with dragon boat racing and tandem cycling.

Back on the ice, 59-year-old Fracasso says she intends to keep curling for as long as she can.

“It’s a game you can pick back up again, “ Fracasso says. “It’s a game for life.”

Canadian delegates in attendance at the 8th DbI European Conference held in Lille, France

Nominations Committee with Knut Johansen the representative from ManCom. The Chair will select the other members to make up the committee. The immediate activity for the Development Officer will be to guide the nomination process for the election of officers and Board members to be installed in late May, 2015. The board will be composed of a president, two vice-presidents, the immediate past-president, and no more than thirty-five (35) other members, no more than fifteen (15) members of which being large corporate members. In addition, the board will have a secretary, a treasurer and an information officer. A timeline for the nominations process has been established

and DbI members will receive details about the process including nomination forms for the election in January 2014. Look for additional information on this democratic process in the DbI website.

DbI Website and Social Media

We have developed a one page information sheet about DbI which is now available on the website. Three editions varying only in the amount of colour and visual information are available to be downloaded and printed should you require information on DbI for distribution.

We will soon be making some changes to the website to create separate portals for the hands-

on use by networks and several language groups. Over the months ahead watch for these revisions to meet the needs expressed by these groups.

Facebook and TwitterDbI is now becoming active in the social media. Our social media addresses are: www.facebook.com/dbiint and @DeafblindInt.

Stan Munroe DbI Information Officer

Con page ontinued from Page 9.

Deafblind International News

Fall /Winter 2013/14 - PAGE 13

DAVID’S TIPS1 Ninety-percent of golf is

setting up properly. I like my weight in my heels so that my body stays balanced.

2 Take a lot of practice swings at home and think to yourself, Do I feel unified?

3 Maintain the triangle formed by your chest and arms on the backswing and through-swing.

4 Forget about line, and think about hitting each putt a specific distance.

5 Realize it’s OK to be less than perfect.

GOLFSAVED

MYLIFE

PAGE 12 - Fall 2013

Golf Lets Me See AgainBeing totally blind is frustrating, but it has let me live without distraction. I don’t have time to “watch” bad TV or shop for stuff I don’t need. I can do most things, like vacuum a floor, board a subway and walk to an address; it just takes me longer. Much longer. That I can start the correct program on my screenless, nine-key computer and compose these sentences is a miracle, and also the result of much floundering.

Because blindness limits my options, every move I make in this world, in a way, is like hitting a golf shot: focused. And I think my memories are richer for it.

Not to suggest my life is any more exceptional than my golf. My career low is 88, but I usually shoot closer to 110. With the support of my

loving wife, Connie, I had a modestly successful career selling insurance, and we raised two beautiful daughters in our Nashville suburban home.

Last time I saw anything was the summer of 1966. I was 18, had a girlfriend, was attending community college to become a TV repairman and was making a little extra money from my part-time job operating the radio at a police station. One night after my shift, an officer invited me to ride along in the new cruiser. We ended up in pursuit of a speeder and crashed. I suffered several injuries to my skull, but there was hope that when the bandages were removed, I’d be able to see. You can imagine my disappointment.

Somehow, my optic nerve has remained partially stimulated deep in my head. I see only black with sparkling red and white stars that rush at me like a bucket of thrown sand.

The months recuperating at my parents’ house I felt true despair. My buddies would visit and take me out in their car, and we’d try to laugh, but I knew I’d never keep up with anyone ever again.

My dad felt terrible because it was through his urging and connection that I got the job at the police station. One day, I heard my golf clubs clanging up the basement stairs, and then my dad told me to get in the car. Was this a sick joke? I had more important things to do, like learning Braille and figuring out what I could do with my life.

But my dad was set on the idea. It was winter, and the course was empty. Neither of us knew that blind golfers had been competing in national tournaments for nearly two decades,

yet my dad instinctively did what all coaches for the blind do. He bent down on one knee and placed my club behind the ball. He held the shaft and clubface in perfect position as I got balanced and comfortable. Then he backed away.

I will never forget that first shot—a 7-iron. The sound of the ball, the soft release of the divot, the wind on my cheek, all the senses came together so that it was like seeing the high draw trace the sky. (Before the accident I was breaking 80 regularly.) In that instant I realized a blind man can play golf, and who knew what else.

I moved to Chicago and found that smooth concrete and sharp corners are heaven for the blind. At a school for the visually impaired, I learned the skills I’d need to attend Southern Illinois University. There I placed an ad offering $1.25 an hour for a library assistant, and the soft-spoken young woman with delicate wrists

who responded was Connie. For one business-class paper, I wrote about the Acushnet company, and we couldn’t stop laughing from the innuendo of so many references to Titleist “balls.”

I’ve won three National Blind Golf Championships, in 1977, 2011 and 2012. The last two I was coached by Everett Davis, a retired banker with a giving heart who is the most dependable man I’ve ever met. The first was with a teenager, Stuart Smith, a scratch golfer with perhaps unreasonably high expectations. I owe my understanding of swing mechanics and development as a tournament player to Stuart, who would get upset with anything worse than a par. When we won at Firestone Country Club in 1977, he took my arm and sprinted me down the fairway.

Most people are hesitant to approach a blind person. That I’m a golfer is the best icebreaker. “No fooling?” people say. It immediately strikes them as ridiculous, yet plausible. It expands their imaginations of what the blind can accomplish. This is precisely the message I seek to convey through my work with the United States Blind Golf Association.

Down deep, I’m still desperate to do the things I can’t. I wish I could drop my wife off at the door of a restaurant and park the car when it’s raining, or even pay the bill. But when I stand over a golf shot, my world resets, and I feel like I’m in control again.

I like to think my presence adds extra meaning to my regular Saturday game with sighted golfers. Golf is about what’s possible, for each of us. When we forget that, we might as well be four dudes having breakfast together.

David Meador / with Max Adler Staff Writer, Golf Digest

Fall 2013 - PAGE 13

THAT I’M A GOLFER IS THE BEST ICEBREAKER. “NO FOOLING?” PEOPLE SAY.IT IMMEDIATELY STRIKES THEM AS RIDICULOUS, YET PLAUSIBLE.


2013 “Lend-a-Hand” Char ity Golf Tournament a smashing success for CD BA

Alliston, Ontario (July 8, 2013) – A record 172 golfers and guests enjoyed – albeit under rainy skies, the 27th annual “Lend-a-Hand” Charity Golf Tournament in support of the Canadian Deafblind Association. This year’s tournament returned once again to the challenging Nottawasaga Resort Golf course near Alliston, Ontario. The fun-filled day saw everyone enjoy a BBQ lunch, amazing prizes and a buffet dinner, all while helping out a worthy cause.

CDBA National Executive Director Tom McFadden had the opportunity to meet all the golfers on a designated front-nine par 3 hole during a “Beat the ED” friendly competition. “Golfer’s Green” added some extra fun with its promotional “Great prizes for Great Shots” hole-in-one challenge on a back-nine par 3 hole.

Thanks to our host the Nottawasaga Inn & Resort and of course our invaluable volunteers Carolyn Monaco, Sandra Owen-Peters, Jim & Dianne MacDonald, Erin Rows and Kim McFadden. Thanks also to Devin Shyminsky for taking responsibility for the Silent Auction.

TOURNAMENT RESULTS

2012 Poster Celebrity: Julia Seed

Ladies’ Closest to the Pin: Lyne Erwin

Mens’ Closest to the Pin: Frank Sparfel

Ladies’ Longest Drive: Lori Weir

Mens’ Longest Drive: Steve Schmeer

Putting Contest: Mark Cooper

Lowest Scoring Team: Zurich Team 2: Tyler Johnson, Randy Nichol, Kristy Kent, Doug Allen

Thanks to the record attendance and support from our generous sponsors as well as companies and members who donated more than 75 prizes, Marsh Canada was able to donate a record $32,800 in support of CDBA. These proceeds help CDBA National to meet its mandate “to promote and enhance the well-being of people who are Deafblind through advocacy, the development and dissemination of information and the provision of support to our Chapters, members and community partners”. CDBA is extremely grateful to have been associated with the Marsh Canada insurance family throughout the last quarter century. Marsh has been a significant supporter for this charity event since its inception in 1987. We salute the outstanding support we have received over the years, from the initial collaboration with Johnson Higgins, to Dick & Gary Gardner, Bill McAleer, Tom Grimes, Jim Abernethy, Adrian Serge, Peter Cleyn and the event management team of Elisa Di Franco, Kelly Dubejsky, and Nicole Abernethy.

“July 8, 2013 - CDBA National Executive Director Tom McFadden (right) accepts a generous donation of $5,000 from Peter Biffis representing the Nottawasaga Foundation in recognition of the 25th consecutive year that the Nottawasaga Inn Golf Resort outside of Alliston, Ontario has hosted the Marsh Canada “Lend-a-Hand” golf tournament in support of the Canadian Deafblind Association”

Guest speaker Sandra Owen-Peters


The 2012 -2013 fiscal year has been a busy one for the Ontario chapter. The highlight of the year was the opening of the CDBA Ontario Resource Centre. The staff moved in, in November 2012 and the centre greeted our consumers from across the province and other community partners in a 3 –day open house in April. A formal open house for dignitaries, board members, staff and other supporters of the resource centre was held in a formal evening in May.

CDBA ON operates a number of programs and services and this past fiscal year the chapter received approximately 9.3 million dollars in revenue to support them.

By far the largest service the Ontario Chapter provides is Intervenor Services to 57 adults with deafblindness. This program is supported by approximately 250 staff. The children’s summer and holiday Intervenor Programs supports an additional 65 children and our staff increases to 315 during this time.

CDBA ON provides services both in the family home and residential

supports. Typically Intervenor services hours can run anywhere from 8 hours per day 5 days a week to 24 hours per day 7 days a week. The amount of service is determined by individual need.

Funding for our programs come from the following areas:• Ministry of Community and Social

Services• Ministry of Health• provincial and federal employment

programs• fundraised dollars • Donations

In addition to our Intervenor Services CDBA ON commits a considerable amount of time and resources to training Intervenors and other staff. This past year the agency spent $140,000.00 in this area.

Online courses and E-learning have become a focus for the Ontario Chapter as a valuable staff training tool. With the generous support of the Ministry of Community and Social Services, CDBA ON was funded to developed 4 online courses this past year. One was delivered as a pilot and the next

courses are scheduled to be offered in January.

The annual Parent Conference was well attended last fall and we have an exciting program planned for the upcoming conference this year. Last year we took a survey to see whether our families wanted this conference to remain a parent conference or whether they would like to see it become a family conference. The response was an almost 50 -50 split so we have decided to offer it as a parent conference with the option to bring your children if so desired. We will not however be running a children’s program at the conference this year.

Awareness continues to be a focus in our chapter. This past year we had a number of activities including:• Interviews in the local newspapers• Awareness night at the Jays game• TSX opening• Flag Raising Ceremonies• Newsletters and new banner

stands• Participation on Intervenor

Services Advisory Group –MCSS• Members of the Deafblind

Coalition of Ontario

CDBA Ontario Chapter News

Blue Jays help raise deafblind awareness

W. Ross Macdonald student Jessica Allard, centre, threw out the ceremonial first pitch at Monday night’s Toronto Blue Jays game against the Atlanta Braves. Allard, who is blind and has limited hearing, appeared on behalf of the Paris-based Canadian Deafblind Association to raise awareness of June as Deafblind Awareness Month. Joining Jessica on the field at Rogers Centre were Blue Jays mascot Ace, her mother, Kim Allard, intervenor Katie Graham and Blue Jays pitcher Brandon Morrow.

May 28, 2013 – Brant News

The Registered Disability Savings Plan (RDSP), which became available to Canadians in 2008, can be a very good way to accumulate tax-deferred savings (and obtain ‘free’ matching grants/bonds) for a disabled person.

Here’s how it works: Any Canadian resident eligible for the Disability Tax Credit can be the beneficiary of an RDSP. There is no lower age limit – an RDSP can be established for a minor and, generally, the sooner the better.

The beneficiary and/or their family and friends can invest funds in an RDSP that will grow on a tax-deferred basis.

Contributions are usually not tax-deductible and can be made by anyone authorized by the holder of the plan up to a maximum lifetime contribution of $200,000 per beneficiary.

There is no limit on annual contributions, other than the lifetime limit.

Contributions must cease at the end of the year in which the beneficiary reaches age 59 and the beneficiary must begin taking payments from the plan (known as Disability Assistance Payments/DAPs) at age 60, although DAPs can be taken at an earlier age in some circumstances.

The federal government will usually

contribute quite generous Canada Disability Savings Grant (CDSG) and Canada Disability Savings Bond (CDSB) amounts to an RDSP. The amount contributed will be based on the family net income of the beneficiary, the value of the contributions each year, and any CDSG or CDSB contribution room carried forward from the preceding 10 years. However, when DAPs are made, all the CDSG and CDSB received by the plan in the preceding 10 years will be clawed back. The best RDSP strategy is to start saving early and leave money in the plan for at least 10 years.

By the way, if you’re setting up a plan for a beneficiary who will turn 50 or older in a year, that RDSP isn’t eligible to receive CDSG or CDSB.

DAPs do not affect eligibility for federal income-tested benefits or credits but may affect eligibility for certain provincial or territorial benefits or credits.

If you intend to leave substantial assets to a disabled person, it is recommended that the assets in question flow into your estate, and that in your will you direct that the disabled person’s share of your estate is to be set aside in a testamentary trust known as a discretionary Henson trust, such that your trustee has the discretion to decide if, when and how much to distribute to or for the disabled person’s

benefit. It would be useful to specify within the will that the trustee may, if he or she thinks it appropriate, use trust funds to make contributions to an RDSP on the disabled person’s behalf, but the trustee should not be required to do so.

An RDSP can be a valuable planning tool – but there are many others to consider. Talk to your professional advisor about what’s best for your situation.

The Canada Disability Savings Grant and the Canada Disability Savings Bond are provided by the Government of Canada. This column, written and published by Investors Group Financial Services Inc. (in Québec – a Financial Services Firm), and Investors Group Securities Inc. (in Québec, a firm in Financial Planning) presents general information only and is not a solicitation to buy or sell any investments, nor is it intended to provide tax or legal advice. Contact your own advisor for specific advice about your circumstances. For more information on this topic please contact your Investors Group Consultant.

COMMUNIQUÉ A publication of the Premier’s Council on the Status of Disabled Persons April 2012 Spring Edition

Understanding the Registered Disability Savings Plan

Rayanne AguilarPhillippe BlaisLarry & Diane BraicoAndrea BrownBill CampbellRaul & Estella CanoCDBA British ColumbiaCDBA New BrunswickCDBA SaskatchewanAayan ChandaniMichael & Patricia ColemanJerry & Annette CoubroughElla CurtisSimon Richard DeCastroHartej DhillonLucia DrewsFranco Ferrari

Tom GreeningSusan HallAlicia Kim HarrisMelanie HernandezPhilip HuangBetty LysionekLinda MamerJohn & Mary MartinJ. Allan MatheisKatie McCrearyAmanda MillerKathy MomtahanCarolyn MonacoBrenda MorinNottawasaga FoundationPatrick PhangBrad & Cheryl Ramey

Sherry RichardsRJK Auto/Truck SalesAndreina RodriguezJohn & Sara-Lee SalterioWanda SchellenbergBarbara SeversIan & Kim ShauerTyra SkibingtonTom & Karen SmartRose SmithCarolann SteeleEric ThompsonWayne & Jennifer TuckerJohn &Cynthia Westerterp

to the following 2013 donors whose generosity helped CDBA continue to offer quality services and support to our deafblind consumers and their families

A Sincere Thank You


What’s Going on in CDBA Saskatchewan? Once again many Interveners’ have come and gone through our doors. We’ve had a number of changes in our management team, a couple new faces in full time positions and numerous part time and relief workers. One strong feature for our agency is a committed core group of full time and part time employees that assist in training and keep the stability needed for the Individuals we support.

Staff training, although tricky to keep up to with the turnover rates but our focus stayed on our 2 day IV training, sign language and Mandt (crisis prevention) classes. We were also able to send a number of staff to a very good conference hosted by SARC for front line workers.

A very positive move from the Saskatchewan government in response to our sectors plea for

better wages and help with the recruitment and retention was a wage lift for all front line staff totalling 11.5% effective Feb 1/13.

Talking about fresh faces; we welcomed into Michael’s Manor young Mr Tie McPhee in September 2012. This will not be a permanent placement for him unless CDBA and Child and Family services can find a new home setting for him to move into. In this past year we have been very pleased with the growth Tie has made and we hope to be able to continue to provide for him in the future.

We hosted a supper in April of this year to celebrate with some of our longest term employees – 10 people who have reach 10yrs(7ppl) & 20yrs(3ppl) years of service! CDBA also hosted a staff appreciation night to thank everyone for all their hard

work through the year.

The Kerr house is now sporting fresh new windows and doors and kitchen cupboards, thanks to Sask. Housing funding. Michaels Manor has a beautiful new Jet therapy tub for the gentlemen to use.

June is Deafblind Awareness month – In Saskatchewan the Minster of Social Services declared June 1st – 7th, 2013as Deafblind Awareness week.

CDBA Sask Chapter hosted its 9th annual golf tournament on June 18th and it was another successful event raising just under $18,000!

The summer is a nice time for change of routines and holiday time both for staff and the Individuals we support.

Spring and summer proved to be a busy time of year as we prepare for all the planned activities. It started with CDBA Sask’s 28th Annual General Meeting on May 28/13. At this meeting CDBA Sask recognized one of our finest with the Intervenor of the Year Award going to Amy Hoenecke. Congrats! The board of directors did not change any members but did a slight shuffle of responsibilities in the Executive positions.

Al Love – PresidentJohn Povhe – Vice PresidentChris Gonari – Treasurer

Kendra Kerr – Recording SecretaryAllan Matheis – DirectorEvelyn Matheis – DirectorTheo Gonari – DirectorKim Bonneau - DirectorDavid Samuel - Director

Nolan Courteau - Director

Next in line of events was the kick off to Deafblind Awareness month including the Certificate of Recognition by Minister June Draude designating June 1-7th, 2013 Deafblind Awareness Week! Then we hosted the Friends and Family Bowling Event at Eastview Bowl as part of our awareness campaign.

It was a relaxed afternoon of bowling, cake and prizes.

Holding in the awareness theme CDBA Sask put up a window display of information in a space provided by Social Services along 21st street, near 2nd Ave.

After months of preparation the 9th Annual “Lend A Hand Saskatchewan Classic” golf tournament took place on June 18/13. Despite a rainy month, the sun was out full force to greet our guests. The day was a true success and the final tally proved it with a grand total of just under $18,000! Thank you to MacDermid Lamarsh law firm for their undying support and sponsorship.

Within the agency we’ve had our share of Intervenors come and go but one we will miss the most is Mrs. Pat Betz. Pat had just achieved her 20th year of service with CDBA and now is moving to BC to live out her retirement dreams. Thank you for your dedication to the Kerr ladies and wishing you the very best in this new stage of life.

Dana Heinrichs, Executive Director

Al Love (President) and Dana Heinrichs at Friends and Family bowling Event

Amy Hoenecke Sask IV of the Year 2013


Looking back on the last year at our Annual General Meeting this past summer was inspiring! We have done so much. The Early Intervention Program (EIP) had Sue and Allison running off their feet. Presently, our EIP provides consultation and training to 23 children with deafblindness and their teams throughout British Columbia, ranging in age from 1 to 5 years old. Of these 23 children, 6 are transitioning into Kindergarten.

The Summer Intervention Program (IP) had 63 participants this year from throughout BC, 9 of which were of preschool age, and 82 Intervenors were employed. The Summer Recreation Program allowed those children in the Lower Mainland and their families and Intervenors to meet at different venues weekly, such as Science World, Silver Brook Trout Farm and the Vancouver Aquarium Aqualab. Fun was had by all and attendance was great! We are now looking forward to our Winter Intervention Program during the winter school break.

The CDBA-BC also hosted some family events this year. We had our first ever CDBA-BC’s Got Talent, complete with a judge’s panel and singing and dancing and in June we had a Bowling Event, a CDBA National initiative, to celebrate and kickoff Deafblind Awareness Month. Our Member’s Family Retreat in August culminated with our AGM and a BBQ Bash, which resulted in many well-fed, happy participants. Our Family Events are also open to our members, so we enjoyed the company of many adults with deafblindness and their Intervenors as well!

This year, we were able to send two young men and their Intervenors to Disneyland for the day, thanks to the generous invitation of Dreams Take Flight! It was a whirlwind of a day, but oh, so many memories!

We are also fortunate to maintain several partnerships with related organizations. The BC Early Hearing Screening Intervention Advisory Committee co-hosted the Adapted Peer Program, for our families of preschool children transitioning to Kindergarten and we also partnered with the Sunny Hill Vision Impairment Team and CNIB to co-host the Cortical Visual Impairment Family Camp. We have an ongoing invitation to attend the Vancouver School Board deafblind field trips, which allows us to stay in contact with some of the families throughout the year. Most exciting this year, however, was our invitation to the BC Vision Teacher’s Association/POPDB Conference, where we learned from the stories, knowledge and strategies of Barbara Miles. What

a truly inspiring three days!

We are certainly hoping to continue the fun with many more programs and activities, as we look forward to the months ahead. Onwards and upwards!

What’s New with the CDBA-BC Chapter?

CDBA Saskatchewan Profile - Rhonda Simon

What’s going on in CDBA Alberta?

It appears Old Man Winter is just around the corner, you can definitely feel the chill in the air.

The weather was exceptional for our annual retreat in the Fall. All the members had a wonderful time and the opportunity to try out some new activities and learn some new skills. This year we had an interesting workshop on Deaf blind rights, which was extremely informative and taught everyone some new information on what they are able to access and how to best fight for each ones rights. We were also able to challenge the members with a low ropes course and watching each one of them maneuver through the course and gain more confidence with each step was so fulfilling

for all of us. They also tried out archery as well as paintball this year for some new activities and everyone really enjoyed themselves. This camp was an overall huge success!!

We had our casino back in June and were only anticipating around $30,000.00, however, came out with approximately $60,000.00. Another success for CDBA AB Chapter! We also had a bowling event back int the Spring and everyone came out played some games, enjoyed some pizza and had a good time socializing together. These events are really great for our group as we are split up all over, so anytime we have together is wonderful. We still are awaiting the call to go

out on the trip to get up close and personal with the wildlife here in Alberta. Once the Bears and Cougars are tranquilized we will have the opportunity to touch them and feel their breath. It will be a once in a lifetime experience for our members and I can’t wait for the time to come.

This year has been quite the exciting and busy year and we are already planning for more for next year. We are still working on getting the apartment building but need more interest from the Deafblind community.

Should you have any questions or concerns please let me know.

Rhonda Simon is one of the kindest people I have ever known. Rhonda is very compassionate and sensitive to those around her. When Rhonda is not working out at Bourassa’s or on the treadmill at home, she is baking for the children at the Crisis Nursery and volunteering at the Kedney Foundation. Rhonda likes to be active and is truly an inspiring person.

Rhonda loves to be with her family & friends and spends a great deal of time with them. This year she attended a family reunion and enjoyed catching up with everyone. In the summer, Rhonda’s favorite

time is camping with her parents.

In Rhonda’s days at the group home, she likes spending time with her roommates and Intervenors. Rhonda enjoys learning new things and is very confident in making decisions as she knows what she wants. Rhonda has a great sense of humor and a infectious laugh. Her favorite fun activities are to joke around, sing, play games, pillow fights, walks outside on a sunny day and of course hitting the spa for some well-deserved pampering.

Jacky Mackenzie Intervenor

Robert Kucherepa – DBA - AB Chapter President


At camp in New Brunswick. News from New Brunswick Chapter

The Harlem Globetrotters...33 consumers, Intervenors and staff travelled to Saint John on March 23rd to interact with and watch the world famous Harlem Globetrotters.

Consumers were able to meet the players, get their autographs, spin the ball on their finger and shoot hoops with the Globetrotters prior to their 2 hour highly entertaining performance. Throughout the entire show everyone was cheering and clapping non-stop. It was a day that will be remembered!

“25 years of camps and they keep getting better and better. Thanks to all the wonderful consumers who come to enjoy it, the Intervenors, staff and volunteers for all their hard work. This year the theme was Mexico.

Friday night campers enjoyed a campfire, corn boil and dancing under the stars.

Saturday, brought a fun filled carnival and SUMO wrestling (though this isn’t Mexican it was a very fun addition to camp!) Lunch was Mexican themed with Nachos. The afternoon was spent playing tug-of-war, parachute game, swimming and crafts Saturday evening was Mexican all the way — there were sombreros everywhere!!!! ….a piñata, cactus, faux margaritas, Mexican hat dance, Mexican jumping beans and so much more!! The evening ended with a fantastic fireworks show!!!!

Sunday brought a bit of rain, but this didn’t dampen spirits...it was auction time and all too soon time to say good-bye…..with everyone looking forward to what next year will bring.”

Disability Awareness: Premier David Alward, left, delivered the keynote address at the 25th annual Legislative Breakfast for Disability Awareness Week 2013 on Tuesday. Above, Alward and Lt.-Gov. Graydon Nicholas, right, present a Disability Awareness Week Provincial award to the Canadian Deafblind Association of N.B., and receiving it is Kevin Symes, executive director.

Photo Credit: Stephen Macgillivray/The Daily Gleaner


Renew your membership or

become a member of CDBA at

http://cdbanational.com/en/membership.html

IntroductionSimilar to all family situations, parents with multiple disabled sensory impaired children usually plan in advance for the various stages in life that their children progress through. In ‘regular families’, parents organize their child’s schooling through the various levels of education until the adult child leaves the family home to make their own independent lives. Once their children begin living independently, most (but not all) of their worries are over!

For families of sensory disabled children who are approaching adulthood, the challenges and questions are radically different. The common concerns and questions that our families face include: What kind of services will my adult child receive when their formal education program ends? What kind of life will my child have when he/she reaches adult age? Who will look after my adult child when we are no longer able to or when we pass away? Dealing with these and many more family concerns is where the transition process comes into play.

As more adult living services and placements for deafblind individuals are being created, it is essential that thoughtful, individualized, detailed planning is undertaken to make sure that each transition occurs successfully.

Personal StoryI’ll digress briefly to speak about my personal involvement with transition to independent living. I am a parent of Andrew, born 46 years ago with Congenital Rubella Syndrome. We were extremely fortunate that Andrew was able to attend a full time specialized program for deafblind children in Canada when he was six years old. Actually he attended a residential school during the school week and returned home for weekends and holiday periods. This meant he started into the process of transition early in his life and became somewhat accustomed to this way of life through his mid teenage period..

The next major phase of his transition occurred at age 17, when he was accepted into a group home at the same time he

was attending the school program. Instead of returning to the school residence at the end of each school day (his weekly home away from home for over 11 years), his home now was the group home. On occasions he visited his family home for weekends as part of the transition process.

Andrew continued to attend his regular school program daily for another four years until the age of 21. Basically his transition to independent living (with support) was now complete. Lions McInnes House was now his home 24-7.

Andrew had experienced different transitional changes throughout his life until the age of 21. He experienced the residential school life; travelled 2 ½ hours each way to and from school each weekend; in his early teens experienced a family breakdown; became acquainted with a new stepmother and a new stepfather, new half-brother and half-sisters. While Andrew represented a good model for transition, it wasn’t without numerous bumps along the way.

Guidelines for transition to independenceCanada had one of the first Independent Living Residences for young adults with congenital deafblindness. The Lions McInnes House was opened in 1983 in Brantford Ontario providing facilities for 9 young adults. My son Andrew became a resident in 1985. Not all parents at the time, for various reasons, favoured the ‘group home’ option.

Over time most families realized that their concerns about the future for their disabled children could be addressed through transition to these specially designed and operated group home options.

But it was not by chance that this successful program was developed in Canada. The first group home was developed as a result of organized parent advocacy efforts by parents associated with the Canadian Deafblind Association. This success story eventually became the model for the network of homes that were gradually established throughout

parts of Canada. To repeat again, the strong influence of parents led to this successful program of transition to independent living.

Once I was lecturing in Brazil and mentioned that in Canada we had a network of group homes that were successfully serving some of our adult congenital deafblind population. I heard tsk tsk’s around the room; with questions such as: why would parents in Canada send their child away? My answer was then and still is…our deafblind children spend 12-15 years in an education facility learning life skills, communication skills, orientation and mobility, etc. They interact and make friends with others with the same disability, playing and communicating; successfully achieving a good quality of life through their late teenage years. When the legal school time is finished (usually age 21) what are their options? If there is not a lifetime opportunity for independence available past formal school time, what will be the situation for these disabled people? What will happen to their quality of life? What will happen to their life and communication skills? Are the parents now expected to take care of these disabled young adults for the rest of their lives?

Simply stated, my conclusion is: if we want these young adults to have a high quality of life - throughout their life – there must be an opportunity for an independent life outside the family home. This doesn’t mean abandonment of their disabled family members any more than it does for their non-disabled family members.

What do we need to consider when making a transition to independent living?

We need to appreciate that transition to a new home for either a disabled or non-disabled individual can be a life changing event. The process can have positive or negative results. It is well established that life changing events, like moving away, can be a risk factor that can lead to such psychological problems as mood disorders (eg depression), short term stress related symptoms (e.g. sadness), and possibly longer term personality disorders such as behavioural and emotional changes.

Transitioning to Independence - A Human RightHaving said this, transition from the family home to independent living will, in the long term, result in very positive benefits for these disabled individuals. It will usually be the individual’s first opportunity to live independently, with support, using one’s own acquired communication and life skills. Integration into a full and active community based life is guaranteed to lead to a better quality of life for these individual. The actual fact is that transition is the natural process of growing up and living an adult life.

Transitions aren’t easy and must be well planned by family members and professionals if we want to maximize the positive and minimize the negative impact. Individuals must be well prepared for any transitional move and must understand the process that is taking place. It shouldn’t be an instant process such as one day the person is home; the next day the person is moving to a completely new environment. That would be very traumatic for all concerned.

So the planning process for transition to independent living should consider, but not be limited to (since I am not an expert) to the following:

• That the individual needs to understand what is happening and why it is happening. This requires the use of good communication.

• Exposing the individual to their new environment initially for short periods; gradually extending the duration of the exposure to familiarize them with their new home. This will develop a better understanding of what they can expect to happen and develop a familiarization of their new environment.

• Ensuring that the individual takes with them familiar furniture and personal belongings to make their transition easier.

• Close family involvement throughout the entire process. It is expected that the transition will be as difficult for the family as it will for the individual, so family

participation is necessary in all the aspects of this transition.

Final wordsIf we want to ensure that these disabled individuals will have the best quality of life, it is important for family members and professionals to plan together for a gradual and orderly transition from the family home to an independent community based setting.

A well thought out transition plan is necessary to ensure that the transition proceeds according to the best knowledge and understanding about how each individual will manage and cope with this major event in their life. Growing up and moving out can be a big change for everyone; but if done properly, everyone in the family will achieve the best quality of life.

by Stan Munroe - Deafblind International

You can now make donations online! Through a partnership with CanadaHelps.org, it has never been easier to make a one-time or monthly recurring gift directly through CanadaHelps portal. This service offers an instant electronic receipt, and you can feel good knowing that your transaction is safe using advanced security technology.

To learn more visit the link from our website at www.cdbanational.com. Thank you for your support in ensuring that, “All people who are deafblind will live rich meaningful lives.”

A presentation at the 5th Grupo Brasil International Forum on Deafblindness, November 2013.


Canadian Deafblind Association 2013/14 Board of Directors

Canadian Deafblind Association Staff Contacts

Canadian Deafblind Association

2013-14 Board of Directors

Carolyn Monaco Director at Large

Dwain McLean NB Chapter Representative

Suzanne McConnell Director at Large

Leslie Comrie BC Chapter Representative

Robert Kucherepa AB Chapter Representative

Brad Ramey ON Chapter Representative

Allan Matheis SK Chapter Representative

Cathy Proll Executive Director, ON Chapter

Staff Contacts

Dana Heinrichs Executive Director, SK Chapter

Kevin Symes Executive Director, NB Chapter

Theresa Tancock Family Services Coordinator, BC

Tom McFadden Executive Director, National

Paul Nobes Information Technology Officer



Sandra Owen-Peters Director at Large

David Brown Director at Large

Canadian Deafblind Association

2013-14 Board of Directors

Carolyn Monaco Director at Large

Dwain McLean NB Chapter Representative

Suzanne McConnell Director at Large

Leslie Comrie BC Chapter Representative

Robert Kucherepa AB Chapter Representative

Brad Ramey ON Chapter Representative

Allan Matheis SK Chapter Representative

Cathy Proll Executive Director, ON Chapter

Staff Contacts

Dana Heinrichs Executive Director, SK Chapter

Kevin Symes Executive Director, NB Chapter

Theresa Tancock Family Services Coordinator, BC

Tom McFadden Executive Director, National

Paul Nobes Information Technology Officer



Sandra Owen-Peters Director at Large

David Brown Director at Large

Mary Guest, founder of Sense’s Usher syndrome programme, has passed away

Very sadly, Mary Guest passed away on Thursday 28 March, 2013. Mary is remembered by many for her incredible commitment to people with Usher and their families.

She joined Sense in 1983, launching an Usher Awareness and Education Programme, and she never looked back.

The work that followed was rich and varied - supporting individuals and their families, establishing international networks on Usher, running arts weekends, setting up support groups, sending out newsletters, sharing new knowledge about the Syndrome, putting together research projects, just to name a few activities. Whatever she did, she did with a passion and she leaves behind a great legacy.

Gill Morbey, Sense’s CEO, remembers her contribution:“Mary was a true professional championing her ‘cause’. She passionately supported people with Usher syndrome, developing and leading research projects and campaigning for services. She was an inspiration not just in the UK but internationally.

I knew Mary over many years but one of my fondest memories was travelling to a conference in Mississippi with her in the 1980’s. The population in that area have a high incidence of people with usher syndrome and I spent most of the long haul flight with Mary ‘lecturing’ me about usher, genetics and how in the future we could at least stop the deterioration of sight. Her passion kept me engaged for hours. We are now looking at stem cell research so I think Mary was well before her time.”

Follow up underway to the Late Manifestations of Congenital Rubella Syndrome in Canada Survey

CDBA National is reaching out to all members to seek out individuals with Congenital Rubella Syndrome to participate in the follow up to the ’Late Manifestations of Congenital Rubella Syndrome in Canada’ survey completed over fifteen years ago. We wish to locate as many of the original study participants who are still with us (and perhaps other individuals who may have been subsequently identified with CRS) and seek their or their advocates cooperation to participate in this follow up survey. The initial project published in 1999 gave very important insights into the later emerging health issues related to CRS. We are hopeful, through this follow up project, to learn more from these individuals as they age about these late emerging health issues.

Other countries that have undertaken similar studies following our initiative are also planning follow up projects to learn more about any age related emerging health issues related to CRS. There is also a great interest internationally to assemble this comprehensive information and make it available to all family members and health practitioners worldwide.

The project questionnaire is available on the CDBA national website in both French and English. The project leader Stan Munroe is available to answer and questions with the completion of the questionnaire, either by telephone (toll free 888-737-1453) or by email ([email protected]).

CDBA Chapter ContactsCDBA National Office1860Appleby LineBurlington, ON L7L 7H7(905) 319-9243 (B)(866) 229-5832 (TF)(905) 319-2027 (F)E-mail: [email protected]

British Columbia Chapter227 – 6th StreetNew Westminster, BC V3L 3A5(604) 528-6170 (B)(604) 528-6174 (F)E-mail: [email protected]

Alberta ChapterP.O. Box 89006Calgary, AB T2Z 3W3(780) 425-9444 (B)E-mail: [email protected]

Saskatchewan Chapter83 Tucker CrescentSaskatoon, SK S7H 3H7(306) 374-0022 (B)(306) 374-0004 (F)E-mail: [email protected]

Ontario Chapter50 Main StreetParis, ON N3L 2E2(877) 760-7439 (T)(519) 442-1871 (F)E-mail: [email protected]

New Brunswick Chapter408 – 212 Queen StreetFredericton, NB E3B 1A8(506) 452-1544 (B)(506) 451-8309 (F)E-mail: office@cdba cdba-nb.cawww.cdba-nb.ca

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