Other organisations & groups that may be helpful are listed below.
Following a child’s diagnosis of Usher syndrome parents can often feel overwhelmed with the burden to educate others and work out what their next steps might be.
Our Case Coordinator can help by providing you with practical support in a variety of ways:
To connect with our Case Coordinator email us at firstname.lastname@example.org
A beautiful insight into families and their experiences with Usher syndrome.
This booklet has been produced by UsherKids Australia in the hope that it brings a sense of belonging and hope to newly diagnosed families. We thank the eight Usher families involved for their openness and willingness to share their personal stories.
The Australian only Usher syndrome Facebook group is a great opportunity for those in the Australian Usher Community to discuss the trials and triumphs, concerns and frustrations we all face on a day to day basis. As everyone has been through things differently, you may pick up some great ideas and new strategies from others. As the group is not limited to families of children with Usher syndrome, it allows those of us with younger children to learn directly from adults with Usher syndrome who have travelled the path before us.
Vision Australia is a leading national provider of blindness and low vision services in Australia. Supporting more than 27,500 people of all ages they aim to create equal opportunity so people who are blind or have low vision can gain an education, employment and be as independent as they choose.
Retina Australia provide information and support to individuals and families affected by Retinitis Pigmentosa as well as other retinal dystrophies. They are completely funded by public donations and they also help to raise funds to finance scientific research into the causes, prevention and cure of Retinitis Pigmentosa and other retinal dystrophies.
Guide Dogs Australia represents Australia’s six state-based Guide Dog organisations. Together, as the nation’s leading providers of orientation and mobility services, including Guide Dogs, they assist people who are blind or have a vision impairment gain the freedom and independence to move safely and confidently around their communities, and to fulfill their potential.
Next Sense is a not-for-profit organisation supporting people who are deaf, hard of hearing, blind or have low vision for over 160 years. NextSense provide support in education, cochlear implants, allied health, therapy, research and clinical services to adults, children and families across Australia and unites the services received from Sydney Cochlear Implant Clinic (SCIC), Taralye, schools and Renwick Centre.
Deaf Children Australia aim to provide children and young people who are deaf or hard of hearing, and their families, with the opportunities and skills to face life’s challenges and to celebrate their potential.
Deaf Children Australia works hard to provide families and children with the opportunity to:
Aussie Deaf Kids aims to empower parents raising a child with hearing loss through online support, information and advocacy.
They are committed to improving the outcomes of deaf children by:
The national provider of government-funded hearing services for children and young adults under 26.
A national organisation that funds research into deafness and hearing loss as well as providing information and education around related topics
A group of deaf people who want to make the life of deaf and hard of hearing teens a little smoother through a range of programs and workshops that give teenagers the chance to connect, pick up new skills and strategies, find mentors and have a good time.
A not for profit organisation working with the community to enhance services and programs that benefit Deaf and hard of hearing adults and children across Australia.
The South Pacific Educators in Vision Impairment (SPEVI) Inc. is the major professional association for educators of students with vision impairments in Australia, New Zealand and the South Pacific region. SPEVI acts as the professional body in matters pertaining to the education and support of persons who are blind, have low vision, deaf-blindness, or additional disabilities.
A not-for-profit organisation providing services to Australians who have a severe vision impairment, giving people with a vision impairment the opportunity to improve the quality and independence of their lives.
A foundation established to help provide financial assistance and support to enable children with a physical disability better access to participate in sporting activities.
An organisation established to build and strengthen opportunities for deaf and hard of hearing people of all ages to participate in sports.
A sporting organisation that aims to increase the participation in blind and vision impaired sports by all the blind community regardless of age or severity of vision impairment as a way to increase social inclusion and a sustainable healthy lifestyle.
A publication for parents, carers & professionals of children with special needs
A national organisation that supports Australia’s carers. They work to improve the health, well being, resilience and financial security of carers.
The SVRC supports over 500 students with vision impairments (blindness and low vision) in Victorian schools. Funded by the Department of Education and Training (DET), the SVRC is the leading centre of educational expertise and provider of materials in alternative format for eligible students with vision impairments in Victoria.
VDEI is part of the Inclusive Education Professional Practice Branch in the Department of Education and Training in Victoria and contributes to improvements in the educational outcomes for the 4,000 students in Victoria who are deaf or hard of hearing.
Access for All Abilities- is a referral service connecting people with a disability to sports and recreational opportunities in Victoria. Their website allows you to search for a nearby accessible sport or activity.
Disability Sports and Recreation – A service directory to help Victorians with disability live happier, more active lives by ensuring they have equal opportunities to take part in the sport and recreation activities they want to participate in.
The Shepherd Centre has been providing children in NSW and the ACT with hearing loss with the tools they need to learn to listen and speak since 1970. Their Early Intervention program is world-renowned for its results. More than 90 per cent of children with hearing loss who graduate from the program attend school with listening and language skills on par with those of their hearing peers.
Located within the University of Sydney on the Sydney Eye Hospital campus the Save Sight Institute is involved in a number of aspects including research, patient care and teaching. Save sight cares for more than 6,000 patients with eye disorders.
Parents of Deaf Children (PODC) is a non-profit organisation, supporting families with babies, children and teenagers with hearing loss in NSW. The organisation offers a range of information, support and capacity building services for parents and carers, respecting the method or methods of communication that the family has chosen for their child. PODC can assist families with free decision making and planning support prior to attending your NDIS planning meetings. Their support also extends to helping families to connect with others in their local area via POD groups (parent groups) and can advocate on behalf of families with government departments and service providers.
Genetic Alliance Australia, formerly Association of Genetic Support of Australasia (AGSA), was formed in 1988 to provide peer support and information for individuals and families affected by a rare genetic condition/rare disease.
The Department of Education and Training provides a statewide coordinated support service for children who are Deaf and Hard of Hearing through the WA Institute for Deaf Education (WAIDE). Parents are provided with a choice of educational settings for their children, ranging from an inclusive placement in a regular school, through to metropolitan specialist schools located in inclusive settings. Parents are also provided with the option of either spoken or signed communication, at all stages of their child’s education.
Telethon Speech & Hearing Centre for Children is a non profit, charitable organisation that exists to support families, children, adults and carers and offers early intervention and school support programs for hearing impaired children, as well as specialist paediatric audiological services.
Senses WA is a not for profit organization that has been providing disability services to people for 120 years. Their services help over 650 children, adults and older adults with a range of disabilities. Senses Australia also provides support and services for families, other health professionals, service providers and teachers.
The Lion Eye Institute is a not for profit organisation that conducts scientific research into blindness prevention and also help patients with high quality eye care. Their large clinic contains a day surgery unit and a laser vision centre. This combined with the research conducted, helps to provided techniques and ideas to help benefit people suffering with blinding eye conditions.
The Genetic Paediatric Clinic is part of Genetic Services of Western Australia (GSWA). It is a state-wide service based at King Edward Memorial Hospital/Princess Margaret Hospital in Perth. It provides diagnosis, assessment and genetic counselling to parents/families of children with a range of genetic conditions. These services are provided through a multidisciplinary team that includes clinical geneticists and genetic counsellors, working closely with DNA and cytogenetic laboratories and other associated disciplines.
Hear and Say provides services and programs to over 1,800 children, young adults and families across six centres as well as e-Auditory-Verbal Therapy and e-Audiology programs for rural and remote areas. They aim to help all children to hear, listen and speak so they can attend a regular school, have wider career choices and can fully participate in their community. Hear and Say combines state-of-the-art hearing technology (digital hearing aids and implantable technology such as cochlear implants) with the Auditory-Verbal Therapy approach.
The program provides statewide support to regions and schools in the areas of vision impairment support and assistive technology. It is managed through Narbethong State Special School and includes the alternative format library service, the paediatric low vision clinic, orientation and mobility services and assistive technologies. These services support schools to provide reasonable adjustments required to support students with low vision to engage with their curriculum
The Paediatric Low Vision Clinic (PLVC) is a direct service provided by the Department of Education (DoE) to students with vision impairment in state and non-state schools. Services are provided to children with vision impairment, including those with Usher syndrome, from birth to school leaving age.
The Ophthalmology Department at Queensland Children’s Hospital provides comprehensive tertiary and secondary care and treatment for children with eye and vision disorders including Retinitis Pigmentosa associated with Usher syndrome. There is an outreach clinic that visits the Cairns Hospital every three months.
The Queensland Eye Institute has become renowned as one of the world’s finest centers for eye health, medical research, education and care. It is Queensland’s only academic research institute devoted to eye related health and diseases.
Genetic Health Queensland (GHQ) is a statewide service that provides diagnosis, counselling, and management advice to individuals and families who have, or are at risk of having, a genetic or inherited condition. A team of medical specialists (clinical geneticists) and genetic counsellors work together at GHQ to look after patients and families all over Queensland.
Eyes and Independence founder Kerri Weaver has qualifications as a specialist teacher in vision impairment and orientation and mobility. Kerri can provide Early Childhood Support under the NDIS throughout Queensland.
CanDo4Kids is South Australia’s oldest charity and works directly with children and young adults with sensory impairment disabilities, such a blindness and deafness, by focusing on what children “can do” and helping them to reach their full potential.
The South Australia Clinical Genetics Service provides a clinical genetics and genetic counselling service within South Australia. The Paediatric & Reproductive Genetics Unit provides diagnostic and counselling services for genetic disorders which occur during prenatal development or childhood, and for prenatal genetic testing
The Tasmanian Clinical Genetics Service (TCGS) provides a clinical service for the diagnosis, management, counselling and support of individuals and families with a wide range of genetic disorders. The TCGS is staffed by Genetic Counsellors, who are based at the Royal Hobart Hospital, and by Clinical Geneticists, contracted from the Royal Children’s Hospital and the Peter MacCallum Hospital in Melbourne, who visit Tasmania to conduct monthly clinics in conjunction with the genetic counsellors.
Usher Syndrome Coalition
Save Sight Now
Molly Watt Trust
Foundation Fighting Blindness
Hear See Hope
Usher Syndrome Society
Usher 1F Collaboration
Usher Kids UK