We have some contacts in each state they may be of benefit to your situation. The list however is dated. If you have a contact that you would like to add please send us the details so that we can add it to the page. If you are in a state that we haven’t mentioned and would like to contribute to the list, please email us at firstname.lastname@example.org and we will add this information to the list. Cheers Team SMA.
NEW SOUTH WALES
The information on this page is kindly provided by Katrina McDonald
Muscular Dystrophy Association of NSW
The MDANSW offers support to people and family affected by any form of neuromuscular disorder, including SMA.
Some of the services offered include are a client services officer who assists in providing information and ensure families are link into the correct services.
The client services officer can advocate on your behalf if you are having difficulty accessing services or being heard. The MDANSW may be able to assist members in the purchase of equipment.
It runs information days and social events for families. The association produces a quarterly newsletter that is sent to all members. The association has proven to be a useful contact to have.
NSW Independent Living Centre
Provides an advisory and information service on all commercially available products that can assist people with disabilities to have an independent lifestyle. For regional clients there is a toll free number to call. The above website has an excellent database for performing equipment searches and suppliers. In particular there is a comprehensive guide in choosing a “Wheelchair accessible vehicle “.
Provides information and referral for equipment, access and services for people with disabilities. On the website you can subscribe to an e -newsletter. This newsletter is an excellent summary of what is happening in the disability not just in NSW but Australia.
The paraquad website has a classifieds section for selling and buying second hand disability equipment; this includes vans and housing -very useful. For members there is the NSW personal equipment and continence supplies (PECS). PECS carry a huge range of continence and skin care products at a lower cost than commercial suppliers.
Is located in Manly, Sydney and provides palliative and respite care for children and their families. Bear Cottage is a beautiful venue containing 10 children’s rooms, family accommodation and recreational areas. Bear cottage is open to all children with a life threatening illness who are under the age of 16. It comes highly recommended for families needing a break.
Northcott, established in 1929 as The NSW Society for Crippled Children, provides assistance from the time a baby is born with or develops a disability, right through the school years and into adulthood. Typically, clients are people with spina bifida, cerebral palsy, muscular dystrophy, other neuro-muscular disorders or an acquired injury. Often, Northcott provides the only support for families who have a child with a rare or lesser-known disability.
MUSCLE CLINICS IN NSW
The following muscle clinics operate in NSW
” Children’s Hospital at Westmead – Neuromuscular Management Clinic www.inmr.com.au ” Sydney Children’s Hospital, Randwick – Muscle Disease Clinic: also operates an outreach service to Canberra and Newcastle.
” Prince of Wales Hospital, Randwick – Nerve and Muscle Clinic ” Concord Hospital – Neuromuscular Clinic
DISABILITY COUNCIL OF NSW
Disability Council of N.S.W An advisory / Advocacy Service that helps people families and careers of people with a disability. They work with families on researching and evaluating programs and services for people with a disability. They establish taskforces to consider specific disability issues.
HEALTH INFORMATION SERVICE
The Health Information Service will help you find up-to-date, quality information about health and wellbeing in easy to understand language.
A resource page with links to government and other organizations and Associations. ACROD is the National Association for disability services. They are actively involved in lobbying federal and state governments for change in the area of disability services and welfare reform
The above organisations provide dogs that can either be a fully trained assistance dog or a well-trained companion dog for child/person with a disability.
TECHNICAL AID FOR THE DISABLED
This is a voluntary organisation that makes or modifies equipment for people with a disability. Very useful for when there is not the commercial equipment available on the market. They also operate a computer loan service, library and provide information.
“Contributed by Saskia – Melbourne – Australia, mother of James (Type II SMA aged 8).”
In the seven years we have lived with James’ SMA diagnosis, we have explored almost every inch of those services in Victoria,Australia who claim to support families such as ours, whether it be through funding, advice, provision of equipment etc. Here is a list of my favourites:
First place to go – The Association for Children with a Disability is an invaluable organisation for any Victorian family trying to work through the maze of bureaucracy that surrounds any government support available to children with special needs. Absolutely essential is a read through their publication ‘Through the Maze’ (available for online download). Also, take advantage of their hotline to seek information or clarification on just about any situation related to child disability. The phones are answered by very experienced parent workers who provide great advice. A national organisation has also been established but is in its infancy.
NICAN has just successfully launched the Companion Card – a card that entitles any Victorian with a serious disability (child or adult) to bring a carer free of charge to any event run by participating organisations including movies, sporting events, concerts, zoo etc. The Companion card also allows carers to travel free on public transport when accompanied by the card holder.
Also, the NICAN database has information on recreation, tourism, sport and the arts for people with disabilities as well as information on community groups, equipment hire and transport services.
Noah’s Ark provides early childhood intervention services to promote the health, well-being and developmental needs of children with additional needs. More importantly, Noahs Ark SET program provides specialised equipment to children with special needs attending childcare, kinder, before and after school care and vacation care venues. Seating, tables, standers, specialised toys etc. The school or centre pay a very minimal annual fee.
In addition to the specific links above (and just as essential!), the following services have also been valuable to us. No web links are available, and contacts vary per region. Refer to the Association for Children with a Disability Guide ‘Through the Maze’ (as above) for contact details:
- Special Needs Subsidy Scheme (SNSS)
Provides funds to childcare and schools to provide additional staff, equipment and training. Enabled James to attend full time long day childcare with an additional staff member and extends now into before/after school care. One of the only reasons we are able to keep working full time!
- Disability Education Funding
This is the big one for school age kids as it funds aide hours which are critical to successful integration into the state school system. Plan well ahead (years) as the application and judgement process is cumbersome. Funds allocated depend on level of disability but rarely equate to a full time aide.
- Early Choices Program (ages 0-5 years)
Provides flexible support options to families with a child who has a severe disability. Provide case management and gap funding for equipment.
- Making a Difference Program (ages 6 and over)
Continues on from Early Choices (family must reapply). Provides flexible support options to families with a child who has a severe disability. Provide case management and gap funding for equipment as well as one-off short term assistance.
- Carer Allowance (Centrelink)
The Carer Allowance is approx. $90 per fortnight paid to Carers of a child with a disability through Centrelink. The best advice we ever had was to channel this money into an account and don’t touch it! We are now able to use these savings to cover big gap funding requirements for new equipment for James, e.g. motorised wheelchair, new manual one etc.
- Health Care Card (Centrelink)
Is issued with the Carer Allowance and subsidises medications on the PBS listing so that the price is reduced to approximately $4.50.
- Disability Continence Program
For those families requiring nappies etc, beyond the usual toilet training years, the program provides up to $550 per year toward the costs incurred. Most SMA Type II children are able to be toilet trained, but for those times/situations where appropriately equipped care facilities are unavailable this funding is worthwhile!
- Aids & Equipment Program (A&EP) (Formally PADP)
This are the folk who will provide the heavy duty equipment funding, e.g. motorised chairs, standing frames, orthotics, etc. Be prepared to queue up!
- Home Enteral Nutrition Program
For those SMA families who require tube feeding for their children, this program subsidises all equipment and formula, e.g. Vivonex.
- Technical Aid to the Disabled (TADVIC)
These guys will adapt or invent any piece of equipment that is not currently available commercially for the price of the materials. Use them especially for seating modifications etc.
Nearly all of the services listed above have long waiting lists and a tedious application process. Plan ahead and be persistent. Good luck!