Useful Website Links

Australasia CHARGE Syndrome Association of Australasia This website is managed by the CHARGE Syndrome Association of Australasia. The dedicated volunteers that work for it organise events for awareness, fund-raising, conferences, and activities that can enrich the lives of people/children with CHARGE syndrome. While not wealthy, this organisation finds a way to maintain free membership for CHARGE affected individuals (and parents) while even providing some small financial assistance for its members in certain circumstances.
Australasia Association of Genetic Support of Australasia Inc (AGSA) AGSA may provide the only contact point for families affected by rare conditions. AGSA will endeavour to facilitate contact with other family/individual affected by the same or similar conditions, and provide information about an overseas support group. AGSA provides a peer Support and Information Officer who deals with enquiries and facilitates ongoing support for individuals, families, health professionals and interested groups. Information seminars, local and regional contacts, resources relating to education, respite care, medical services, allowances and other helpful organisations.
Australia Early Childhood Intervention Australia “Early Childhood Intervention Australia (ECIA) provides a national focus and forum, promotes the public profile of Early Childhood Intervention, facilitates effective liaison and advocacy in the community, and fosters quality information and service provision. Services include organisation of seminars and workshops and a national conference every two years.”
Australia Vision Australia “Vision Australia is a living partnership between people who are blind, sighted or have low vision. We are united by our passion that in the future people who are blind or have low vision will have access to and fully participate in every part of life they choose.”
Australia Riding for Disabled “Riding for the Disabled Association is a voluntary, not for profit, organisation which provides riding instruction and other activities associated with riding and harness driving for people with disabilities.”
Australia The Australian Deafblind Council Represents people who are deafblind, their networks and organisations working in the field. Membership open to individuals who are deafblind, their families, other support people and organisations.
Australia Quantum Technology Technology for deaf and blind persons
Australia Make A Wish Foundation Grants wishes across Australia to children with life threatening illnesses.
Australia Word of Mouth Technology Pty Ltd Suppliers of assistive technology for people who are Deaf, Hard of Hearing or Deafblind. Products such as visiting alerting system, a vibrating pager that alerts you to the telephone, doorbell, smoke alarm, baby crying. Also TTYs, listening devices and hearing access for public areas.
Australia Vision Australia Foundation Provides a range of services including information, advice, referral, counselling, early childhood intervention, medical support, occupational therapy, physiotherapy and pathology.
Australia Deaf Children Australia Deaf products, helpline 1800 645 916, school holiday programs, family annual holiday,
Australia Able Australia Information, support, advocacy and respite care for people with multiple disabilities, including deafblindness
Australia Siblings Australia Develops membership, creates awareness of sibling issues, lobbying, representation, information resource development, promoting siblings within other organisations, developing information services, training packages, peer support program training. Develops links between corporate and philanthropic sources of support, government and funding bodies relations, fostering partnerships with health and disability agencies.
Australia National Auslan Interpreting Booking and Payment Service (NABS) Free Service. Australia-wide service, funded by Dept of Family and Comm. Services, it provides interpreters to Deaf and hard of hearing people who use sign language and would like an interpreter for private medical appointments. Free service to sign language users and medical practitioners. Available for adults and children who are deaf or hard or hearing. Also deafblind people. Hours 8am-8pm M-F, exc public holidays.
Australia Australian Association of the Deaf Inc (AAD) The Australian Association of the Deaf Inc. (AAD) is the national peak organisation for Deaf people in Australia. It represents the views of Deaf people who use Auslan (Australian Sign Language).
Australia Home Care (home and community care – HACC) HACC is jointly funded by federal and state governments. They provide respite and other services such as domestic cleaning.
Australia Companion Card To quote their website: “The Companion Card allows people with a profound disability, who require attendant care for the rest of their lives, to participate in community activities and events without discrimination. Companion Cards can be presented at participating organisations where cardholders will not be required to pay an admission fee for their companion who is providing attendant care.” Unfortunately not all states and territories participate in this programme at the moment. Only Victoria, Western Australia and Tasmania currently issue and honour the card. Note that you may have some success in organisations honouring the card in other states so it is worth bringing it with you if you are travelling.
Australia RIDBC (Royal Institute for Deaf and Blind Children) “RIDBC’s primary purpose is to provide high quality educational services to children who have significant hearing and/or vision impairment, including children who have additional disabilities.” RIDBC is a New South Wales organisation that provides teleconferencing teaching for people who cannot get to the campus; this includes people from other states and territories. They can also send toys to borrow that are tailored to get the interest of child with sensory problems and extend their development. Don’t forget to ask them for Auslan or other teaching resources as they seem to have a small library that they are willing to lend out to families
Australia Centrelink CHARGE syndrome automatically qualifies the carer of that person to receive a carer’s allowance from the Australian government. If the person in question has a disability severe enough and the carer’s income is low enough then they may also qualify to receive carer’s payment. The financial assistance that they provide is not backdated so make sure you apply for this assistance as soon as you are able to. If you qualify for Carer’s Payment then you also qualify for a concession card and other benefits, such as maximised Family Tax Benefit A which can be more financially beneficial than the allowance and payment.
Australia Australian Hearing Australian hearing is a national government service that provided the hearing aids for hearing impaired children and other at risk groups. The service is practically free with only a small fee applicable for people who are not in possession of a Centrelink concession card.
Australia Gastrostomy Information and Support Society Works with people with gastrostomies, their families and care givers, visiting nursing staff, dietitians, speech pathologists, doctors, stomal therapists and other interested groups. Can provide training. Lobby to government funding for enteral formula and equipment.
New South Wales DADHC NSW Department of Aging, Disability and Home Care
New South Wales Centacare Industries “Centacare helps people with disabilities and those with severe barriers to employment. It helps people find and keep a job and develop skills and confidence. It also runs courses for anyone who wishes to develop skills before entering the workforce.”
New South Wales Access Industries “To Provide services for people with disabilities in employment related areas.”
New South Wales Technical Aide to the Disabled (NSW) “Our vision is for people with disabilities and their carers to have access to innovative technical solutions, enhancing quality of life, opportunities for independence and participation in the community.”
New South Wales Sunnyfield Association Sunnyfield is best place for people with disabilities to live, learn, work, have fun and get support when needed.”
New South Wales NSW Council for Intellectual Disability “The NSW Council for Intellectual Disability (NSW CID) is the peak organisation in NSW representing the interests of people with intellectual disability”
New South Wales The Junction Works “provides programs for young people families, women, children, the young at heart, family counseling and people with disabilities who live in the Fairfield, Liverpool, Campelltown, Camden and Wollondilly areas.”
New Zealand Specifically developed to provide another avenue and access for people to contact more health and social services
New Zealand What Everybody Keeps Asking – about disability information … a comprehensive generic disability information website
New Zealand Taranaki District Health Board
New Zealand Supports children dealing with change, loss, grief. Has many useful links
New Zealand Site which exists to support the parents of sick and premature babies
New Zealand This NZ site has very useful information and links
New Zealand Parent-to-Parent NZ is an information and support network for parents of children with special needs ranging from the very common to the most rare conditions
New Zealand Supporting the parents and families of children with disabilities and special needs
New Zealand Email: This directory lists over 150 support and information groups for rare and common disorders. One of the best Web sites for links to support groups
New Zealand Links to many useful sites
New Zealand The web magazine for conscious parenting. This colourful Auckland based site has well researched information on all aspects of parenting
New Zealand An excellent site on all aspects of health, including sections for kids, teens and parents
New Zealand Raises funds, organises events, special projects
New Zealand Web site for the NZ Health and Disabilities Commissioner
New Zealand Information on health camps
New Zealand Enable New Zealand homepage
New Zealand Comprehensive national information on Ministry of Health funding for equipment, housing modifications and vehicles
New Zealand Site of the Chile Health Research Foundation; has general articles and research news
New Zealand Directory of websites related to pregnancy, childbirth, babies and parenting
New Zealand Useful site for families of ADD/ADHD children
New Zealand Excellent site for information on brain development/disorders
New Zealand New Zealand Support list on this site Most of the NZ support services were listed in “APEPSI Directory”. Some sites have been ommitted because the links are no longer valid.
New Zealand “The Halberg Trust Activity Fund provides grants to young people living with a disability who want to be involved in sport and leisure – this can be equipment or lessons for example swimming lessons, tennis lessons, customized trikes, trampolines etc.”
New Zealand Several agencies are available to support parents and children with disabilities, and help you to ensure you understand your rights, or where to go for specific support. This site offers some recommended links.
New Zealand Useful site for families of ADD/ADHD children
New Zealand Directory of websites related to pregnancy, childbirth, babies and parenting
Tasmania Department of Treasury and Finance This Tasmanian government department provides land tax exemptions to Centrelink concession card holders.
Tasmania Early Support for Parents This is a volunteer home visiting service that helps “anyone with the care and responsibility for children, especially families experiencing stress”.
Tasmania Community Based Support (south) This organisation receives funding from HACC and seems to act as a distribution point for services. They seem to provide limited stop-gap assistance until more permanent funding can be organised.
Tasmania Early Childhood Intervention Service Early Childhood Intervention Service is part of the Tasmanian Department of Education and provides an amazing service for children below school age with special or developmental needs. They have an excellent array of services from therapies to consultations with specialist teachers and all with excellent flexibility with regards to the time that they provide the service and the location; including your own home if suitable for you.
Tasmania Association for Children with a Disability In addition to the Victorian branch, there is a Tasmanian branch and a Hobart office in Bathurst Street. They provide advocacy services, publish a magazine, and organise a variety of events. It is worth contacting them to obtain the publication called “Through the Maze – A guide through the maze of services for parents and children with a disability”.
Victoria Youth Disability Advocacy Service YDAS provides individual advocacy for young people with disabilities between the ages of 12-25 to achieve their rights and have a stronger voice. YDAS supports clients in the areas of education, housing, employment and support services.
Victoria Yooralla Library and Information Service Formed in 1978 following the amalgamation of Yooralla Hospital School for Crippled Children and the Victorian Society for Crippled Children and Adults. A library covering all aspects of physical and multiple disability. Free internet accss for clients. Collects all reports produced by government and other agencies. Open 10am-3pm M-F
Victoria Yooralla Helps Victorian children and adults with disabilities, as well as those who have acquired disabilities through accident, ill health and age. Provides community access, independence and employment services, as well as residential care, respite care and carer support services.
Victoria Wresacare Wresacare is a community managed, non profit organisation providing a range of services. Committee comprises carers, clients and interested community members Flexible Funding Program – one off funding for any given financial year (1 Jul – 30 June). Clients given set amount of money which can be used for respite, community support, in home supports, costs incurred in the provision of respite, camps or school holiday programs or as agreed by Respite manager. Support from Wresacare or approved nominated service.
Victoria Victorian Disabled Persons’ Parking Scheme Statewide scheme operating in Victoria. Provides two permit catergories with varying parking concessions, based on the need for assistance. Application forms available from most municipal councils.
Victoria Victorian Continence Resource Centre Provides information and incontinence and continence assistance programs.
Victoria Vicdeaf Primary support, advisory and referral service for Deaf and hearing impaired people in Victoria. Not for profit. Case management, independent living training and accommodation outreach, counselling, drug and alcohol education, support for people with Ushers, shared supported accommodation, social groups, Auslan classes, interpreting and notetaking, audiology, aural rehabilitation.
Victoria Very Special Kids Supports families throughout their experience or caring for children with life threatening illnesses from diagnosis through to recovery or bereavement. Includes counselling, sibling support, bereavement support, trained family support volunteers and care at Very Special Kids House. Family camps, parent activities, newsletters.
Victoria VALID VALID is made up of people with disabilities and family members who freely commit their time, energy and passion to an organisation that stands up for people with intellectual disability and their families. The main focus of VALID’s work is individual advocacy, standing alongside people with intellectual disability in their efforts to get justice and quality support.
Victoria Travellers and Disability Access Services (TADAS) TADAS assists people with disabilities improve their independence and to access Melbourne. Provide a range of services that can be used singly or in combination to meet the needs of people with any disability. The services are free, no referral, assessment or appointment is needed. Personal care (toilets, change table, meals/drinks), independence support (community access, development services, referral, education sessions), self base (welcoming environment, staff available, lounge, TV, café), Communication assistance (TTY, speech to speech, internet, computers), information, social contacts, wheelchair services (battery charging, tyre pumping, breakdown service, wheelchair hire).
Victoria TLC for Kids Provides urgent assistance and immediate distractions for sick children in hospital needing ‘rapid tender loving care’.
Victoria Taralye (Advisory Council for Children with Hearing Impairment) Taralye aims to promote the linguistic, educational and social outcome of deaf children through innovative early intervention services and research. Services include information, advice, referral, therapy counselling, clinic, medical specialist/surgeon, early childhood intervention.
Victoria TADVIC (Technical Aid to the Disabled) Under the coordination of occupational therapists, TADVIC volunteer members design, construct or modify equipment for people with disabilities. This service is needed where no commercially available solution will meet their needs. There is no charge for the TADVIC service. Clients are asked to reimburse the volunteer for any cost of materials and travelling expenses incurred.
Victoria Starlight Foundation Grants wishes for children aged 4-18, living with a terminal, chronic or critical illness. A child can only be referred to Starlight for a wish by a qualified health professional. Delivers innovative ‘Distractic Therapy Programs’ within hospital environments, with the endorsement and support of the healthcare profession. Programs are designed to be an integral part of the total health care of children.
Victoria Specialist Childrens Services Funded by DHS provides services to families with a child (from birth to school entry) with a disability or developmental delay. Located in different regions, go to website to locate nearest SCS.
Victoria SCOPE Scope is committed to overcoming the personal, structural and attitudinal barriers that prevent those with disability from participating in the community life and works to make our community more inclusive, more accessible and more welcoming.
Victoria Royal Childrens Hospital Major childrens hospital in Victoria available also to children from Tasmania and southern New South Wales. Visit website and clink ‘contacts’ link for useful numbers, RCH floor maps and street map.
Victoria Riding for the Disabled Association Victoria Dedicated to providing people with disabilities the opportunity to participate in horse riding and related activities. Scope is a not for profit organisation providing disability services throughout Melbourne and Victoria to children and adults with physical and multiple disabilities. Information, support and assessment services are available.
Victoria Noah’s Ark Toy Library Early childhood intervention services and extensive toy library for children with disabilities. Provides early childhood intervention, physiotherapy, occupational therapy, speech therapy, playgroups, camps, toy library.
Victoria Monash Medical Centre
Victoria Moira Spiral program – Eligible for adults living in supported residential services, aged between 18-64, residein areas of Stonnington, Port Phillip and Glen Eira. Janus program – adults living, or wanting to live, independently who have a mild to borderline intellectual disability, aged between 18-64 years, have a desire to live independently with limited support, live in the areas of Stonnington, Port Phillip, Glen Eira, Bayside and Kingston. Spiral program – supports adults with a disability living in registered supported residential services in the cities of Glen Eira, Port Phillip and Stonnington. Provide a one-to-one service. Supports individuals to access a range of community activities and services. Advocacy and support with general issues. Support wth education and training/employment options. Janus program – a community outreach program aims to actively encourage the development of living skills to enable individuals with a disability to live a constructive, fulfilled and independent lifestyle within the community. Provides individual skills assessment, support and advice to families to encourage independence in family members, individual support to those living in the community, support with transition from supported to independent living. Assists in accessing community programs, accommodation, recreation services.
Victoria Interchange Victoria Community based, not for profit organisation that provides support to families who have a child with a disability. Provides respite and social support through the help of volunteers. In-home respite, host care, youth groups, school holiday programs, camps and sibling and family activities.
Victoria Independent Living Centre (Yooralla) Assists people with disabilities to enhance their independence and quality of life by providing advice and information on daily living equipment. Centre has a large range of equipment on display. Items can be demonstrated. Telephone advisory service staffed by therapists. Appointments are available. Open 9-4.30pm M-F. Assists in – household and kitchen, seating (lounge, dining, office chairs), bathroom and toilet, building fixtures and design, beds, clothing and dressing, eating and drinking, wheelchairs, electric scooters, vocational needs, recreation, hoists and lifting equipment, communication, transport, walking, continence.
Victoria Guide Dogs Victoria Centre for Mobility Assessment and Training Offers a comprehensive range of free mobility services to help people travel confidently and safely outside the home. Assist people of all ages who are living with low vision. Orientation and mobility; Childrens mobility; Guide Dog Mobility; Acquired Brain Injury mobility; Occupational Therapy; Staff and Consultants; Free services
Victoria Genetic Support Network of Victoria Information such as contact details for support groups, community resources, genetic conditions, genetic hot topics, information and resources for support groups, setting up a support group. Can provide a strong voice for people affected by genetic conditions. Representing and promoting members’ rights to the wider community and State and Federal governments. Workshops and seminars.
Victoria Disability Rights Victoria DRV is an advocacy organisation directed by people with disability. We work with and on behalf of adults with physical and mental disabilities. Aim is to ensure all Victorians with physical and multiple disabilities enjoy the same citizenship rights and life opportunities as other members of society. Such as equal opportunity, access to accommodtion, support services, transport, etc, information about your rights and acess to formal complaints Provide individual advocacy, information and support to people with physical or multiple disabilities. Represent on behalf of individuals, helping them advocate or helping others advocate. Assist in various appeal tribunals, make referrals to appropriate services, taking issues to government departments, Ministers and the media.
Victoria  DINA DINA is a group of disability information providers with interest in resource and information sharing and networking. DINA has evolved as a forum for networking and as a catalys for developments in the disability field. The aim is to facilitate cooperation and communication between information services for people with disability in Victoria etc.
Victoria Deafness Foundation (Victoria)
Victoria Citizen Advocacy Assists and empowers people with an intellectual disability to have control over their decisoin making and prevent discrimination and social exclusion. Members of the community volunteer their time to form a partnership with a person in need of advocacy. Advocates represent and protect the rights and interests of another person and encourage people to speak up for themselves. Monitors the quality of services given. Facilitate access to new programs, services and supprts. Offer opportunities for community inclusion.
Victoria Carers Victoria Counselling – short term, delivered by qualified professional counsellors, via face to face or over the telephone.
Victoria Association for Children with a Disability A non profit organisation providing information, support and advocacy for Victorian children with a disability and their families. Siblings: Your Shout a website made by and for adolescents who have a brother or sister with a disability or chronic illness. Contact A comprehensive service list is available on this website at ‘Through The Maze’ resource booklet for Victoria available on line under ‘Information and Support for Families’ link at
Victoria ECIS – Early Childhood Intervention Service (Dept of Human Services) Supports children with a disability or developmental delay and their familes, from birth to school entry. Provides special education, therapy, counselling, service planning and coordination, assistance and support to access services such as kindergarten and childcare.
Victoria Cochlear Implant Clinic, Royal Victorian Eye and Ear Hospital The Cochlear Implant Clinic (CIC) assists severely hearing impaired adults and children achieve significant improvements in their daily communications through a range of surgical and non-surgical interventions.
Western Australia WA Deaf Society
Western Australia Senses Foundation
Western Australia Association for Blind WA
Western Australia The Deafblind Education Service is based at WA Institute for Deaf Education (WAIDE) as part of the State-wide Services of the Department of Education. Deafblind Education Visiting Teachers provide highly specialised educational support, particularly in regard to the unique communication needs of children who have combined hearing and vision loss, including children with multiple sensory disabilities. Communication HANDbooks, individualised to each student, are developed in collaboration with teachers and families. Professional Learning and information specific to deafblindness are available to schools, districts, family members and other service providers. Early Intervention for children with deafblindness is vital. Effective early interactions between a child and parents/caregivers will form the foundation for further language and communication development. Deafblind education offers early intervention in a child’s home Many children with deafblindness have complex health and medical issues, eg. CHARGE Syndrome, requiring extensive hospitalisation;; therefore, early intervention can commence in hospital when a child is well enough and the family is ready. The Deafblind Education Service is available to children from the time of diagnosis through to the completion of high school. Contact: Sharon Barrey Grassick .. Deafblind Education Team Leader Mobile: 0410 543 014 WAIDE: (08) 9286 7000
Worldwide Electricity Service Providers You may be eligible to receive a power bill concession if you apply for it. The company may also provide a concession for people who use certain types of medical equipment in their home.
Worldwide Telephony Service Providers Some telephony companies provide a priority assistance service for people with medical conditions. This means that in the event of a fault your issue will be dealt with a higher than normal priority. Contact your service provider to find out if they have this service.
Worldwide Local Councils You may be able to approach your local council for concessions for parking, property rates and possibly other city services.
Worldwide  Accredited Schools Online A Guide to Nutrition and Fitness for Students

We created this guide to help students of all ages and their families better understand the effects of poor nutrition and obesity, and how best to eat well, exercise, and live a healthy life. Key elements of the guide include:

– Wellness tips for college students, including places to eat and exercise on campus

– Facts and figures about student obesity and fitness in America

– Interviews with two leading nutrition experts

– Tips for healthy eating and exercise at home

Two nutrition professionals lent their thoughts and expertise to this guidebook. Shari Partnoy is a registered dietician, published author, and regular contributor on CNN and the Dr. Oz Show. Bonnie Y. Modugno is a nutrition consultant, author, and speaker.