Spina Bifida and Hydrocephalus Association of

Saskatchewan – North Chapter Newsletter

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 Spring/Summer 2008 Newsletter

Spina Bifida and Hydrocephalus
Association of Sask. North
c/o Laurel Scherr
351 Kenderdine Road,
Saskatoon, Sk S7N 3S9
(306) 249-1362
E-mail



Message from Our President

As I prepare reports for the AGM, I can’t believe another year is over!   SBHAS-N has had a very busy year.  

We continued our support of the swimming, basketball and dance programs; held our annual Christmas Party and Family Barbeque and acknowledged our Spinal Cord Team during Spina Bifida Month.  We provided funding to families for various activities, camps, computers and home renovations.    We held a successful Education Day in March -“Life’s Transitions” was our theme.  As a result of our Education Day, a committee was formed to address transition issues in a more concrete way. Our Newsletter and Website are wonderful tools to communicate with our families, and we invite all members to contribute to these.

As most of you know, bingo revenues do sustain our Association.    We are always open to new suggestions to compliment this fundraising.  We were very excited this year to work with The Bay and Safeway to diversify our fundraising opportunities and offer volunteers another way to contribute to our organization. 

Our membership is growing, and we welcome input from all members.   Our Association will only become stronger with more involvement.   Please contact any board member if you have an idea or would like to get more involved in our Association.

At the National level, a new Executive Director, Jody Stadnyk, has recently been hired.  We look forward to working with her to strengthen our relationship with SBHAC.

Once again, I’d like to thank you for allowing me to act as President of this very worthwhile Association.  I feel blessed to have such great Board Members to work with.   I hope to see many of you at the Adult Rehabilitation Open House on Oct. 6/08 from 2:00 to 3:30 pm at City Hospital.  

Respectfully,

Laurel Scherr

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NEW DISABILITY SAVINGS OPTION COMING IN 2008

Taken from the Saskatoon Star Phoenix, September 24, 2007

COMMENTARY
New disability savings option coming in 2008
TERRY McBRIDE

The new Registered Disability Savings Plan (RDSP) will be available in 2008. The purpose of the RDSP is to help families improve the future financial security of their family member with a disability.
The family of a disabled person will soon get lots of help to save money. In fact, even if you don’t actually have spare cash to sock away, the federal government might make some of the RDSP deposits for you.
A family with a low income (under $37,178) can qualify for a Canada Disability Savings Bond (CDSB) of up to $1,000. Such complimentary RDSP deposits are available each year for up to 20 years.
Canadians with family incomes under $74,357 who deposit $1,500 per year of their own money into the RDSP would see the federal government add a generous matching Canada Disability Savings Grant (CDSG) of $3,500. Such matching government grants will be available until the end of the year the disabled beneficiary turns 49.
By making regular deposits for 25 years you should be able to accumulate well over $100,000 for your RDSP beneficiary. This nest egg could help pay for care for a financially dependent child after the parents have retired or died. The money can grow quickly because RDSP investment income is not taxable to the beneficiary until withdrawals begin.
Many parents will eagerly take advantage of the new CDSG grants. A large RDSP plus a sizeable life insurance policy on their lives should enhance the financial security for a disabled child.
But what happens if the disabled child applies for social assistance at age 18? Will the RDSP be a help or a hindrance?
Social assistance programs have means tests. Entitlement to benefits depends on what you own and how much income you receive. Provinces try to limit support to those who are truly needy.
Assets such as a house and a car are generally exempt assets. On the other hand, having a bank account is enough to disqualify someone from receiving social assistance. Likewise receiving “income” in the form of a $1,000 inheritance or winning a $5,000 bingo prize could cause a person’s welfare cheques to be cut off for a number of months.
Normally disabled welfare recipients face dollar-fordollar clawbacks of their benefits whenever their families provide monetary support. Indeed welfare regulations seem to encourage non-monetary gifts. The whole purpose of the new federal RDSP is to give families a way to provide monetary support to supplement provincial social assistance. Only the wealthiest Canadians would likely ever use RDSPs if such savings totally disqualify the disabled beneficiary from receiving provincial social assistance.
Provinces are expected to revise welfare regulations to accommodate RDSPs. Ideally provinces would classify an RDSP as an exempt asset (like a house or a car) and significantly reduce the means-test clawback rate for cash received as RDSP withdrawals.
Disability Tax Credit     If you have a disabled family member, you should help that person apply for the Disability Tax Credit (DTC), which is required to open an RDSP in 2008. Call the Canada Revenue Agency (CRA) at 1-800-959-8281 to obtain the application form. Alternatively visit the CRA website at www.cra.gc.ca to print form T2201 yourself.
Your doctor must verify that the person is “markedly restricted” in various activities of daily living to qualify for a DTC. Mail the completed T2201 to CRA.
The DTC is also the key to receiving the monthly Child Disability Benefit of up to $195 per month for a child under 18.
When a family member’s DTC is transferred to a supporting person’s income tax return, it is possible to save up to $1,825 of tax per year (using Saskatchewan rates).
Because you normally have to wait for months to receive a reply on a DTC application, now is the time to get started.
Terry McBride is president of the local chapter of Advocis (The Financial Advisors Association of Canada). He works at Raymond James Ltd., a member of the Canadian Investor Protection Fund. A recommendation of any strategy would only be made following a personal review of an individual situation. Seek independent advice for your tax-related questions.

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Canadian Transportation Agency decides in favour of one-person-one-fare:

OTTAWA - January 10, 2008 - The Canadian Transportation Agency has ordered Air Canada, Air Canada Jazz and WestJet to adopt a one-person-one-fare policy for persons with severe disabilities who travel within Canada by air. The airlines have one year to implement the policy.
The tribunal's Decision means that for domestic services, Air Canada, Air Canada Jazz and WestJet may not charge more than one fare for persons with disabilities who

The Decision does NOT apply to:

The Decision is based on longstanding principles of equal access to transportation services for persons with disabilities, regardless of the nature of the disability, and the Agency's legislative mandate to remove "undue obstacles" to their mobility. The Decision respects related decisions of the Supreme Court of Canada and Federal Court of Appeal.
The airlines are expected to develop a screening process to assess eligibility under the one-person-one-fare policy. For persons who travel with an attendant as required by the carriers' domestic tariffs, the Decision notes that carriers already perform assessments and have screening mechanisms to determine fitness and conditions for travel. Their screening mechanisms could be adapted to include functional assessments, and related screening expertise is available to them. For persons disabled by obesity, the Agency cites the practical experience of Southwest Airlines, which screens for entitlement to an additional seat by determining whether a person can lower the seat's armrests. 
The airlines failed to demonstrate to the Agency that implementation of a one-person-one-fare policy will impose undue hardship on them. The Agency estimates that the cost of implementing the one-person-one-fare policy represents 0.09 per cent of Air Canada's annual passenger revenues of $8.2 billion and 0.16 per cent of WestJet's equivalent revenues of $1.4 billion.
The three applicants in the case were the Council of Canadians with Disabilities, Joanne Neubauer of Victoria, and the Estate of the late Eric Norman, who was a resident of Gander, Newfoundland and Labrador.
In a separate statement released today, the Agency offered to facilitate a collaborative process for implementation of the one-person-one-fare Decision. "It would be desirable to have a common screening approach to determine eligibility to benefit under the one-person-one-fare policy," said Geoffrey Hare, Chairman and CEO of the Agency. "A co-operative approach would be potentially beneficial to Air Canada, Air Canada Jazz, WestJet and the Gander International Airport Authority as well as other Canadian air carriers and airport authorities that may consider voluntary implementation of the one-person-one-fare policy."
The Canadian Transportation Agency is an independent tribunal which operates like a court to render decisions on a case-by-case basis. The Agency's jurisdiction with respect to persons with disabilities, stated in Part V of the Canada Transportation Act, is to ensure that persons with disabilities have proper access to effective transportation service. The Agency makes decisions and orders to eliminate undue obstacles to the mobility of persons with disabilities in the federal transportation network.

The Agency's Decision No. 6-AT-A-2008 on the one-person-one-fare application may be viewed at www.cta.gc.ca. The Executive Summary, two backgrounders and a related news release may be found in the Media Room at www.cta.gc.ca
For further information, please contact: News Media Enquiries: Jadrino Huot at 819-953-9957
General Public Enquiries: info@cta-otc.gc.ca; 1-888-222-2592

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Where there’s a will…. There’s a way!



The group with a guide at the rudder tackle the
Athabasca River
Reprinted with permission from “Dialect”.

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Education Day March 2008 – “Life’s Transitions”

Over 15 children and 26 adults attended this year’s Education Day on “Life’s Transitions” held at the Kinsmen Children Center on March 8, 2008.  The Speakers/Presenters for the morning included: Jim Gawluk and Paul Gustafson from Uro Medical Supplies Ltd., Joelle Buckle, Shelley Hamilton and Dennis Lalonde. The afternoon featured a Parent’s Roundtable Discussion led by Linda Renaut.  As a result of the afternoon, Hilary Govan has taken on the momentous act of compiling a Transition Binder which will be available to our Association Families.  We are looking forward to the final product. 
On behalf of the session participants thank you to the planners:  Laurel Scherr, Cindy Martel, Linda Renaut,

Thank you to Coloplast for sponsoring our registration and coffee break.  Thank you to Uro-Medical Supply Ltd., for sponsoring our lunch break and Dennis Lalonde of Golden Mobility. Thank you to the KCC Staff and Lynn Onushko, as well as a huge thank you to our Childcare crew:  Lori, Ginny and Carly. 

Paul Gustafson, Jim Gawluk-Uro Medical Supply Ltd., 
Laurel Scherr - President SBHASN

Paul Gustafson, Chad Layton, Sheridan Jewell, Duncan Renaut

Sheri-Lynn Turgeon, Ashley Baerg, Joelle Buckle, 
Christine Scherr, Sara Govan

Dennis Lalonde - Golden Moblility

Shelley Hamilton - Social Worker KCC

Displays and Parents Networking is always a "bonus".

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Is Your Teen Ready to Drive?

Driver Evaluation Program (DEP) Information for the Spina Bifida and Hydrocephalus Association
The DEP is located on the 8th floor at Saskatoon City Hospital 

The Occupational Therapist at the Driver Evaluation Program (DEP) assesses a person’s functional ability to safely operate a motor vehicle. Areas that are addressed include: vision, visual perception, attention, executive function (planning, judgment, etc) and physical abilities.

If a person has never driven before, it is recommended that the DEP functional assessment take place prior to starting driving lessons.  This is beneficial to ensure:

  1. The person has the capacity to develop safe driving abilities.
  2. Appropriate equipment recommendations are made
  3. Recommendations regarding suggestions to maximize the effectiveness of driving lessons are made.
  4. Client has awareness of potential limitations regarding driving and possible compensatory measures.

Unfortunately, DEP does not have access to appropriate equipment to complete the on-road assessment for those unable to transfer from a wheelchair.

The Driver Evaluation Program (DEP) is a service provided by Kinetik, a Saskatoon Health Region program.  For further information or to make a referral, please contact the program by calling 655-8612.

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SPINAbilities:  A Young Person’s Guide to Spina Bifida

The Spina Bifida Association of America has online activities to augment the publication, “Spinabilities”.  The online activities include practical planning independence checklists, mobility issues information and much more.  Check out the complete information @ http://www.spinabifidaassociation.org and click on Living with Spina Bifida. The following is an excerpt from the website: 
“There are many resources available which tackle the unique challenges that children and adults with Spina Bifida face however, the same can not be said for resources available to young people. SPINAbilities is a publication that was developed to help bridge this information gap and provide answers to teens and young people. SPINAbilities provides practical tips for becoming independent and managing health care with humor and sensitivity. It's an easy-to-read (and hard to put down) book with clever illustrations that covers important topics like mobility and equipment; managing skin, bowel and bladder care; staying healthy and fit; self-esteem and body image; relationships with parents and siblings; friendships and romantic relationships; dealing with insensitive and rude people; improving academic performance and career skills.”  (The book is available at the ResourceCenter at KCC, check it out at your next visit).
SBA has also made some of the best parts of this book and its great information available online. Fun quizzes and helpful checklists are also provided to supplement the helpful tips. Subject menus in each section will help to find specific topics of interest.

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Please contact any member if you have questions, suggestions, or ideas.  We are all here to make our Association supportive and relevant.

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Bingo update:

We must start our Bingo Report with many thanks to ALL who do their best to come and work when called.  Some extra special Thank You’s go out to grandparents, aunts, uncles, brothers, sisters and good friends who come and volunteer their services for us.  One more thank you to Mr. Dave Elder who has a connection with students that need to do service work for school credits, and this has provided many volunteers for us. 

 The Lucky Horseshoe Bingo Hall which had relocated to the corner of Avenue B and 20th Street West has closed.   We have transferred our bingo license to the ClubWest Bingo Hall and will be put on their schedule beginning in September. We hope  to work on Saturday or Sunday afternoons.

The program we have for the teens has helped us with workers as well.  The teens gain work experience that they are able to add to their resume, and it makes me feel like we have done something for the kids when I get called as a reference for employment opportunities for them.   Please let me know if you’re interested in working any bingos. 

Once again, thanks to all of you who do your part in our fundraising.

Respectfully submitted by
Shawn Scherr

Safeway:

On behalf of our Association we presented at  two Safeway stores last fall, and we were delighted to be chosen as the partner charity with the Lawson Height Safeway Store.   For 10 weeks, many fundraisers were held in the store involving their staff and our volunteers.   Over $9,400.00 was raised for our Association.  

Submitted by Laurel Scherr and Linda Renaut

The Bay:

A unique fundraising opportunity was presented at the National SBHAC meeting last fall which involved pre-selling $5 gift cards for The Bay.   Our charity made the entire $5 for every card we sold.   A total of $570.00 was raised for SBHAS-N.

Submitted by Laurel Scherr


      Ask an expert;  I've heard cranberry juice prevents urinary-tract infections. Is that true?
Dr. Julian Midgley, chair of the Kidney Foundation of Canada's Medical Advisory Committee, responds:

In a recent study, 12 women with recurrent urinary-tract infections (UTI's) who took 400 mg of cranberry extract daily for 12 weeks did not suffer UTIs.  Eight women who continued to take cranberry extract were free of UTIs two years later.  This study was small, but there are other, more rigorous studies that seem to back up those findings. The tannins in cranberry juice appear to reduce the ability of E.coli bacteria to stick to the wall of the bladder. I'm not aware of one type of cranberry juice being more effective than another. Some studies use sweetened juice; others refer to cranberry extract. But, with anything not prepared in a pharmaceutical setting, you never can be sure what's in it.  And although there's no evidence confirming how much cranberry juice prevents UTIs, the current consensus is one glass a day.  

Thank you to Shelley Elder for this article.

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Our Spina Bifida Association would like recognize and extend a “huge” thank you to the Community Grant Program funded by the Saskatchewan Lotteries Trust Fund for Sport and Recreation and the City of Saskatoon. SBHAS-N once again was approved for a grant for our swimming lessons held this spring.  Also, thank you to Shelley Elder for all the work she did in completing the grant application.
  
On December 2nd, 2007 our Annual Christmas Social was held at the Martensville Recreation Center.  There were over 60 people in attendance and everyone had a great time bowling, playing pool, playing shuffleboard, and foosball.  Our silent auction raised over $250.00, thanks to all the prize gathering and organizing by Cindy Martel.  The pizza supper was a hit but couldn’t compete with the arrival and gifts from Jolly Old Santa himself.  Thank you to everyone who was able to make it out and thank you to our organizers Cindy Martel, Laurel and Shawn Scherr, Gene Layton and Santa (alias David Jarvis).

Spina Bifida