Resources
Spinal Muscular Atrophy Association of Australia.
ABN. 82 885 991 569
Resources and Support in N.S.W.
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 ".
IDEAS
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.
PARAQUAD NSW
www.paraquad-nsw.asn.au/page.asp?partid=177
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.
BEAR COTTAGE
www.chw.edu.au/about/news/items/old/items/bear_cottage.htm
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 SOCIETY
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:
" 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.
ADULTS:
" 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.
ACROD
www.acrodnsw.net/Resources/links.html
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
ASSISTANCE AND COMPANION DOGS
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.