How we can help

How we can help
Everyone’s experience with Usher syndrome will be different, however there are many people who have faced some of the challenges you may now be facing. In this section you will find some personal stories of those living with Usher syndrome and links to other organisation and available services.
It may be helpful to find some professional support to help you talk through how an Usher syndrome diagnosis has impacted you emotionally and physically, but if you would like to chat with another parent who has been there before and can share their experiences with you, you can contact us via email at info@usherkidsaustralia.com or via the contact page 

Other organisations & groups that may be helpful are listed below.

UsherKids Australia Case Coordinator

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:

  • Providing one on one emotional support to navigate the range of feelings you may be experiencing.  
  • Providing you and your child’s team with information & resources on Usher syndrome.
  • Helping you to identify and access new support needs for your child.
  • Connecting you with other parents (if you feel ready).
  • Accessing additional NDIS supports & funding.
  • Coordinating a team meeting with the various early intervention teachers, clinicians and allied health professionals currently working with your family.
  • Facilitating small parent group meet ups online.  

To connect with our Case Coordinator email us at info@usherkidsaustralia.com

UsherKids Australia Family Stories

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.. 

Usher Syndrome Private Facebook Group

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. 

https://www.facebook.com/groups/627318990791098/

National Links

ABLE AUSTRALIA

Able Australia is one of the leading not-for-profit organisations that is leading the charge to deliver high quality services to people living with multiple disabilities, including deafblindness. Able Australia currently support more than 4000 people throughout the ACT, Tasmania, Queensland and Victoria. 
 

VISION AUSTRALIA

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.

 
The Centre for Eye Research Australia was established in 1996 and is now the leading eye research institute in Australia. Their goal is to eliminate the major eye diseases that cause vision loss and blindness in Australians.
 

RETINA AUSTRALIA

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

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 (Previously RIDBC)

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

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:

  • access unbiased information,
  • become more connected with each other,
  • participate in peer to peer support,
  • access community, recreational and youth activities,
  • engage individually tailored support, and to
  • develop skills in advocacy, relationship building and influence

AUSSIE DEAF KIDS

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:

  • Providing online parent-to-parent support on a variety of platforms. The support needs to be empathic, informative and supportive of the choices families make.
  • Providing an independent information resource for families raising a deaf child in Australia through our website www.aussiedeafkids.org.au. The guiding principle is an intuitive website that provides comprehensive, yet parent-friendly, information from birth to the post-school period. The information should be relevant, meaningful and evidence-based to assist parents to make informed choices about raising their deaf child.
  • Advocating for the rights of deaf and hard of hearing children and their families to receive the services and support they need to achieve their potential.
  • Collaborating with parents, consumer organisations, service providers and academics to improve services and support for families.

HEARING AUSTRALIA

The national provider of government-funded hearing services for children and young adults under 26.

DEAFNESS FOUNDATION

A national organisation that funds research into deafness and hearing loss as well as providing information and education around related topics

HEAR FOR YOU

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. 

DEAF SERVICES

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.

SOUTH PACIFIC EDUCATORS IN VISION IMPAIRMENT (SPEVI)

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.

ROYAL SOCIETY FOR THE BLIND

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. 

SPORTS ACCESS FOUNDATION

A foundation established to help provide financial assistance and support to enable children with a physical disability better access to participate in sporting activities.

DEAF SPORTS AUSTRALIA

An organisation established to build and strengthen opportunities for deaf and hard of hearing people of all ages to participate in sports. 

BLIND SPORTS AUSTRALIA

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.  

SOURCE KIDS

A publication for parents, carers & professionals of children with special needs

CARERS AUSTRALIA

A national organisation that supports Australia’s carers. They work to improve the health, well being, resilience and financial security of carers.

Victorian Links

THE GENETIC SUPPORT NETWORK OF VICTORIA

The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions.  The Network is proud to be associated with a wide range of support groups throughout Victoria and Australia as well as peak professional bodies such as Victorian Clinical Genetics Services.
 

STATEWIDE VISION RESOURCE CENTRE (SVRC)

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. 

AURORA SCHOOL

Aurora School is an innovative educational organisation that provides optimal learning environments for Deaf and Deafblind children and their families across the State of Victoria. Communication, Language and Literacy form the foundation of programs that support each child’s whole development. The addition of an Inclusive Community Kindergarten supports access to the broader environment.
Victorian Clinical Genetics Services (VCGS) delivers expert genetic testing and genetic support services to thousands of families in Victoria, throughout Australia, and around the world.
A subsidiary of the Murdoch Childrens Research Institute, 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.


MONASH GENETICS CLINIC

Monash Genetics Clinic provides for the diagnosis, management, counselling and support of adults and children with a wide range of genetic disorders and also includes prenatal diagnosis for various genetic conditions.
 

PAEDIATRIC HEARING LOSS INVESTIGATION CLINICS

The Paediatric Hearing Loss Investigation Clinic is located at Monash Children’s Hospital in Clayton. Children see a paediatrician and audiologist to provide a comprehensive and integrated assessment of the possible aetiology of their hearing loss. Further investigations may be required including ENT, genetic, radiological and ophthalmological assessment. All referrals and correspondence : phlic@monashhealth.org 
 

CARING FOR HEARING IMPAIRED CHILDREN CLINIC

The CHIC clinic at the Royal Children’s Hospital Melbourne provides coordinated medical and developmental care, including assessment, management and surveillance of infants and children with permanent sensorineural hearing loss.
 

VICTORIAN DEAF EDUCATION INSTITUTE

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

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

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.

New South Wales Links

THE SHEPHERD CENTRE

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.

SAVE SIGHT INSTITUTE

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

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.

Western Australian Links

WESTERN AUSTRALIA INSTITUTE FOR DEAF EDUCATION

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 AND HEARING CENTRE

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 AUSTRALIA

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. 

LIONS EYE INSTITUTE

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. 

GENETIC SERVICES OF WESTERN AUSTRALIA

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.

Queensland Links

HEAR AND SAY CENTRE

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. 

STATEWIDE VISION IMPAIRMENT SERVICES (SVIS)

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

EDUCATION LOW VISION ASSESSMENT CENTRE (previously PAEDIATRIC LOW VISION CLINIC)

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.

QUEENSLAND CHILDREN’S HOSPITAL

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.

QUEENSLAND EYE INSTITUTE

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

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 

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.

South Australian Links

CAN DO 4 KIDS

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.

SOUTH AUSTRALIA CLINICAL GENETIC SERVICES

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

Tasmanian Links

TASMANIAN CLINICAL GENETIC SERVICE

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.

International Links

Usher Syndrome Coalition
https://www.usher-syndrome.org

 

Usher 2020
http://www.usher2020.com

 

Save Sight Now
https://www.savesightnow.org

 

Usher Mom
http://ushermom.com

Molly Watt Trust
https://www.molly-watt-trust.org

 

Noisy Vision
https://www.noisyvision.org

Foundation Fighting Blindness
https://www.fightingblindness.org

 

Cure Usher

https://www.cureusher.org

 

 

Ava’s Voice
https://www.avasvoice.org

 

Hear See Hope
http://www.hearseehope.com

 

Usher Syndrome Society
https://www.ushersyndromesociety.org

 

Usher 1F Collaboration
https://www.usher1f.org

 

Usher Kids UK
https://www.usherkidsuk.com

 

Stichting Ushersyndroom
https://www.ushersyndroom.nl/en/

 

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