Support Services and Programs

Information about national and state-based support services and programs that can be leveraged by those who are diagnosed or care for someone with SMS.

NATIONAL DISABILITY SERVICES, PROGRAMS AND FUNDING

  • National Disability Services (NDS) is Australia’s peak body for non-government disAbility service organisations, representing more than 1050 non-government service providers. Collectively, NDS members operate several thousand services for Australians with all types of disAbility: https://www.nds.org.au/
  • The National Disability Insurance Scheme (NDIS), will support a better life for hundreds of thousands of Australians with a significant and permanent disAbility and their families and carers. The NDIS will mean peace of mind for every Australian – for anyone who has, or might acquire, a disAbility. Please visit this site for state-specific information and roll-out details: http://www.ndis.gov.au/
  • The Better Start for Children with DisAbility initiative provides funding for early intervention services. Children with an eligible diagnosis must register for Better Start before they turn 6 years old. A child will have until they turn 7 to access funding: http://www.betterstart.net.au/
  • The Genetic Alliance Australia assists families and clients who are affected by a rare genetic condition/diseases: http://www.geneticalliance.org.au/
  • National Health Genetic Counselling Services provide an individual or family with information and support involving the diagnosis of a genetic condition, the provision of information and supportive counselling (advice and guidance) by a team of health professionals, so that families and individuals may be better able to adjust to diagnosis. This URL provides links to nation-wide Genetic Counselling Services: http://www.genetics.edu.au/Genetics-Services/genetic-counselling-services
  • Association for Children with a Disability (ACD) can assist parents, carers, siblings, family members or professionals who work with children with a disability, to make the most of available services and supports. The first year of joining is free: http://acd.org.au/
  • Riding for the Disabled Association Australia (RDAA) is a voluntary, non-profit organisation which provides opportunities for anyone with a disability to enjoy safe, healthy stimulating, therapeutic, horse-related activities in Australia: http://www.rda.org.au/

AUSTRALIA CAPITAL TERRITORY

NEW SOUTH WALES

  • Centre for Disability Studies (CDS) works with NGOs, Government, People with DisAbility, Family members, and other stakeholders doing research, evaluation and training projects: http://www.cds.med.usyd.edu.au/about-cds
  • Hunter Genetics is based at the Waratah Campus Newcastle and is comprised of two services; a General Genetics Service and the Genetics of Learning DisAbility (GOLD) Service. Hunter Genetics holds annual Smith-Magenis Syndrome clinics for those families in the region. They have teamed up with Smith-Magenis Australia and PRISMS to deliver various seminars over the past couple of years: http://www.hnekidshealth.nsw.gov.au/site/hunter-genetics
  • The Easy Access Australia site provides information about accessible travel in Australia and feature attractions, accommodation and regions as they are documented. Currently the focus of the site is Sydney: http://www.easyaccessaustralia.com.au/

NORTHERN TERRITORY

QUEENSLAND

  • The Department of Communities, Child Safety and Disability Services helps people with a disability and their families to access a range of supports and services they need as they move through the different stages of their life: https://www.communities.qld.gov.au/disability
  • The Queensland Government People with a Disability site brings together information for people with disability, and their family, carers and service providers: http://www.qld.gov.au/disability/

SOUTH AUSTRALIA

  • In South Australia, disability services are provided by the government and by approved non-government and private agencies. Services such as schools and health services often have dedicated staff who can provide general help to people with disability and their families and carers: http://www.sa.gov.au/topics/community-support/disability

TASMANIA

  • Possability has been a trusted provider of services to Tasmanians with disability for more than 25 years. They have worked with hundreds of people to develop independence, confidence and decision-making skills: http://possability.com.au/about/our-approach/

VICTORIA

  • The Centre for Developmental Disability Health (CDDHV), an academic unit established in 1998 by the Victorian State Government to improve health outcomes for people with developmental disAbilities. The Centre works with mainstream healthcare providers to build professional level understanding in relation to the health and healthcare issues of people with disAbilities: http://www.cddh.monash.org/index.html
  • Victorian Clinical Genetics Services (VCGS), as a subsidiary of the Murdoch Childrens Research institute, delivers expert genetic testing and genetic support services to thousands of families in Victoria, throughout Australia, and around the world. VCGS provides both clinical and laboratory pathology services for genetic diagnosis, as well as screening and counselling, through a team of clinical geneticists, genetic counsellors, laboratory scientists, metabolic physicians, social workers and support staff: http://www.vcgs.org.au/.

WESTERN AUSTRALIA

  • The Disability Services Commission works in partnership with service providers and other government departments to provide information, supports and services to people with disability, their families and carers: http://www.disability.wa.gov.au/

Smith-Magenis Syndrome Australia