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Chapter 9:
Organisations and further resources
Local organisations
can put you into contact with specialist centres and other resources
in your area.
State based spina bifida associations
The spina bifida association in each state is
a good first contact point when seeking information about support
and services. The associations can assist those affected by spina
bifida, theirs carers and those working with people with spina bifida.
Membership is encouraged for all those with and affected by spina
bifida.
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Spina
Bifida and Hydrocephalus Association of SA Inc.
PO Box 272
Torrensville Plaza SA 5031
Telephone: 08 8443 5200
Fax: 08 8443 5100
Email: info@spinabifida.asn.au
Website: www.spinabifida.asn.au/
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Spina Bifida Association of Victoria
c/o Yooralla Society of Victoria
705 Geelong Rd
Brooklyn VIC 3025
(PO Box 1101, Altona Gate VIC 3025)
Telephone: 03 9362 6111 or Freecall 1800 686 533
Fax: 03 9314 9825
Email: library@yooralla.com.au
Website: www.sbav.org.au
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Spina
Bifida Association of Tasmania
Contact: William Brown
PO Box 450
Sandy Bay TAS 7006
Telephone: 03 6275 0987 |
Spina
Bifida Association of WA Inc.
37 Hampden Rd
Nedlands WA 6009
Telephone: 08 9389 8311
Fax: 08 9389 8331
Email: sbawa@swannet.com.au
Website: www.sbawa.asn.au |
Key Australian spina bifida contact points
Australian Spina Bifida and Hydrocephalus
Association Inc.
The Australian Spina Bifida and Hydrocephalus
Association Inc. is an incorporated body servicing the interests
of state bodies. The state based associations are the best contact
point for clients, their families, carers and health workers, but
the website contains useful information and links to Australian
websites (www.asbha.org.au).
Spina Bifida Foundation of Victoria
The Spina Bifida Foundation of Victoria
was established to improve the quality of life of the spina bifida
community by raising money for and developing a range of activities
and services. Activities have a strong focus on promoting independence
for people with spina bifida.
Spina Bifida Foundation of Victoria
PO Box 166
Parkville VIC 3052
Telephone: 03 8344 7924
Website: www.sbav.org.au/foundation.htm
Assistance for continence aids and funding
Many organisations are available to assist
with obtaining continence supplies and aids.
The provision of equipment, disposables and aids for successful
continence management can be expensive and many programs are available
to assist affected individuals
When applying for assistance for incontinence aids, the number of
organisations providing assistance and their roles can be confusing.
Social workers, continence nurses and doctors all have experience
in applying for the various schemes, and may be asked to help when
completing application forms to ensure that no errors are made that
may delay payments or applications.
Continence Aids Assistance Scheme
The Continence Aids Assistance Scheme
(CAAS) is a Commonwealth Government program offering assistance
to people who have permanent incontinence due to permanent disability.
The program offers an annual subsidy to approved clients to order
approved continence aids listed on a schedule.
People aged 16-64 years of age with permanent incontinence from
a permanent disability can apply for CAAS if they are eligible to
receive a disability support pension through Centrelink, or a pension
from the Department of Veterans’ Affairs. CAAS also has other
restrictions and eligibility criteria.
For further information, CAAS
can be contacted through the company PQ Lifestyles at:
PQ Lifestyles
PO Box 2082
Milton QLD 4064
Telephone: 1300 134 260
or contact:
The Department of Health
and Aged Care
Telephone: 1800 807 487
or write to:
CAAS
Department of Health and Aged Care
GPO Box 9848
Canberra ACT 2601
State based organisations
Each state has aids and equipment programs,
and some have additional services available to assist with incontinence
management.
Health care providers will be able to identify and refer patients
to these services, especially specialist continence clinics. In
addition, local spina bifida associations will also be able to identify
appropriate services and agencies.
Useful websites
The following international sites contain useful information
on spina bifida and hydrocephalus.
Spina Bifida Association of America •
www.sbaa.org
International Federation for Hydrocephalus and Spina Bifida •
www.ifglobal.org
Spina Bifida & Hydrocephalus Association of Ontario •
www.sbhao.on.ca
Other sites of interest include:
Continence Foundation of Australia •
www.contfound.org.au
Australian Council of Stoma Associations • www.australianstoma.org.au
Specialist spina bifida clinics
As well as adult spina bifida clinics, paediatric
hospitals are listed as they can refer adult patients to suitable
facilities in their local area. If there is no specific clinic listed
in your area, contact your state spina bifida association for information
on local specialist health care providers.
New South Wales
Adult Spina Bifida Clinic
Westmead Hospital
Department for Rehabilitative Medicine
Cnr Hawkesbury and Darcey Roads
Westmead NSW 2145
Telephone: 02 9845 7800
Spina Bifida Clinic (children)
Sydney Children’s Hospital
High Street
Randwick NSW 2031
Telephone: 02 9382 1589
Spina Bifida Unit (children)
The New Children’s Hospital at Westmead
Locked Bag 4001
Westmead NSW 2145
Telephone: 02 9845 2769
Victoria
Adult Spina Bifida Service
C/- Monash Institute for Neurological Disease
Monash Medical Centre
Clayton Road
Clayton VIC 3168
Telephone: 03 9594 2240
Spina Bifida Clinic (children)
Royal Children’s Hospital
Flemington Road
Parkville VIC 3052
Telephone: 03 9345 5522
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South Australia
Spinal clinic (adult)
Royal Adelaide Hospital
North Terrace
Adelaide SA 5000
Telephone: 08 8222 4000
Spinal clinic (adult)
Queen Elizabeth Hospital
28 Woodville Road
Woodville South SA 5011
Telephone: 08 8222 6000
Continence Clinic (adult)
Repatriation General Hospital
Daws Road
Daw Park SA 5041
Telephone: 08 8275 1927
Spinal and continence (children)
Adelaide Women’s and Children’s Hospital
King William Road
North Adelaide SA 5006
Telephone: 08 8161 7000
Tasmania
Contact State Spina Bifida Association
Northern Territory
Alice Springs - contact Spina Bifida Association
of South Australia
Other places- contact SBH, Queensland
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Queensland
Princess Alexandra Hospital
Spina Bifida Clinic for Adults
Cornwall St
Woolloongabba QLD 4102
Telephone: 07 3240 2641
Mater Children’s Hospital (children)
Spina Bifida Clinic
Raymond Terrace
South Brisbane QLD 4101
Telephone: 07 3840 1812
Royal Children’s Hospital (children)
Spina Bifida Clinic
Herston Road
Herston 4029
Telephone: 07 3636 7818
Spina Bifida Clinic Paediatrics Outpatients (children)
Gold Coast Hospital
Telephone: 07 5571 8345
Nerang Street
Southport QLD 4215
Townsville Children’s Community Therapy Services (children)
Spina Bifida Clinic
Telephone: 07 4728 2681
Western Australia
Spinal Rehabilitation Clinic (children)
Princess Margaret Hospital for Children
Thomas Street
Subiaco WA 6008
Telephone: 08 9340 8886
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Continence organisations
National Continence Helpline
The National Continence Helpline is a joint project
of the Commonwealth Government and the Continence Foundation of
Australia. It aims to assist people with incontinence, their families
and carers, as well as health professionals. The help line can refer
patients to local services.
Telephone: 1800 330 066
More help can be gained by contacting the Continence
Foundation of Australia at:
Continence Foundation of Australia Ltd
AMA House
293 Royal Parade
Parkville VIC 3052
Telephone: 61 3 9347 2522
Fax: 61 3 9347 2533
Website: www.contfound.org.au
Ostomy associations
The following associations may be of use to patients
for stoma care. Colostomy associations can also help with other
stoma besides just colostomies. If no ostomy association is listed
close to your area, please contact your state spina bifida association
for local ostomy health care providers and services.
New South Wales
Colostomy Association. of NSW Inc.
Unit 5/7-29 Bridge Road
Stanmore NSW 2048
Telephone: 02 9565 4315
Ileostomy Association. of NSW Ltd
Block E, Ozanam Village
West St, Lewisham NSW 2049
Telephone: 02 9568 2799
Australian Capital Territory
ACT & Districts Stoma Association
Inc.
2nd Floor, Department of Health Building
Cnr Moore & Alinga Streets, Canberra City 2601
PO Box 1260, Canberra City, ACT, 2601
Telephone and fax: 02 6205 1055
Victoria
Ileostomy Association (VIC) Inc.
Suite 322, 3rd Floor, The Block
98-100 Elizabeth Street
Melbourne, VIC 3000
Telephone: 03 9650 9040
Ostomy Association of Melbourne Inc.
Cabrini Medical Centre
Isabella Street
Malvern VIC 3144
Telephone: 03 9508 1879
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South Australia
Colostomy Association of SA (C.A.S.A.)
160 South Road
Torrensville SA 5031
Telephone: 08 8354 2618
Ileostomy Association SA Inc.
1 Shipster Street
Torrensville Adelaide SA 5031
Telephone: 08 8234 2678
Tasmania
Ileostomy & Colostomy Association
(TAS) Inc.
Statton Bldg, Repatriation Centre
Hampden Road
Hobart TAS 7000
PO Box 415, Sandy Bay, Tas, 7006
Telephone: 03 6223 2974
Western Australia
WA Ostomy Association Inc.
15 Guildford Road
Mount Lawley WA 6050
Telephone: 08 9272 1833
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Queensland
Gold Coast Ostomy Association Inc.
8 Dunkirk Close
Arundel QLD 4214
Telephone: 07 5594 7633
Website: www.ostomy.org.au
North Queensland Ostomy Association
Inc.
Shop 4,
52 French Street
Pimlico QLD 2478
Telephone: 07 4775 2303
Website : www.ostomy.org.au
All correspondence and orders to:
PO Box 1017
Hyde Park
Castletown QLD 4812
Queensland Colostomy Association
Inc.
22 Beaudesert Road
Moorooka QLD 4105
Telephone: 07 3848 7178
Email: colostomy@primus.com.au
Website : www.ostomy.org.au
Queensland Stoma Association
Inc.
Unit 4, ‘Accent Place’,
10 Valente Close, Chermside 4032
PO Box 370, Chermside South, QLD, 4032
Telephone: 07 3359 7570
Emergency Telephone: 07 3359 7570
Website : www.qldstoma.asn.au
Toowoomba & South West Ostomy
Association Inc.
c/o Epworth Nursing Home
Stenner Street
Toowoomba QLD 4350
Mail address: P0. Box 7314, Toowoomba M.C., 4352
Telephone: 07 4636 9701
Website : www.ostomy.org.au
Wide Bay Ostomy Association
Inc.
c/o Bundaberg Base Hospital
Bourbong Street
Bundaberg QLD 4670
Telephone: 07 4150 2074
Website : www.ostomy.org.au
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.Further reading for patients
Information on the following publications is
available from either the Spina Bifida Association in your state,
or by contacting:
More help can be gained by contacting the Continence
Foundation of Australia at:
Library and Information Service
Yooralla Society of Victoria
705 Geelong Road Brooklyn VIC 3025
Telephone: 03 9362 6143
Email: library@yooralla.com.au
Website: www.yooralla.com.au/library
Spina bifida and hydrocephalus explained.
Spina Bifida Association of Victoria.
A booklet explaining the basics of spina bifida
and hydrocephalus in plain language.
Downloadable from the website www.sbav.org.au
Spinabilities. A young person’s guide
to spina bifida by Lutkenhoff M,
Oppenheimer SG. Woodbine house, 1997. A
young person’s guide to all aspects of spina bifida including
incontinence and sexuality. Excellent resource for teenagers with
spina bifida.
Hoath L, Gilbert S. Oops. A common sense
approach to toilet training a child who has a ‘problem’.
This excellent plain language guide covers
all aspects of the management of urinary and faecal incontinence.
Although written for children and young people, it contains much
information of use for the adult with spina bifida.
Nolan T. Fitness training diary. Royal
Children’s Hospital. 1996.
This resource contains information and a diary
to help manage faecal incontinence and is available from the Royal
Children’s Hospital, Melbourne.
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