A range of professionals are available to support those with low vision. Some are funded through the Medicare system (eg. ophthalmologists, optometrists, GP’s, dermatologists) while others may be funded through NDIS for eligible persons. Private health insurance can be used for some items like prescription lenses. Professionals with low vision expertise (marked *) can generally be accessed through low vision providers (see the support heading under the For Parents or Those with Albinism tabs).
Ophthalmologists are probably the initial “go to” professionals for diagnosis and assessment of albinism. They are registed medical doctors who have done additional training in the treatment of eye disorders, including surgery. A Paediatric Opthalmologist has expertise in working with children and some have experience in operating to dampen nystagmus or correct astigmatism. Not all Ophthalmologists have experience with albinism as it is a rare condition.
With annual visits, the ophthalmologist can monitor the development of a child’s vision and advise on any surgery or non invasive treatment, preferably before the age of 8 years.
Adults with albinism generally have visits every couple of years to monitor the eyes and detect any non-albinism related conditions early, preventing or delaying any further loss of vision.
An official diagnosis of albinism with a measurement of visual acuity from an ophthalmologist must be submitted with any application for any government funding or support, including schooling and NDIS.
Ophthalmology may be free in public hospitals, but there is generally a long waiting list and they may not have experience in albinism. Some of the fee in private practice may be covered by Medicare or private health insurance for surgery.
The optometrist is a health care professional who examines eyes for refractive errors or the presence of occular disease. They are able to prescribe glasses or contact lenses to correct refractive error and to daignose and treat some conditions. Those with albinism may also be long or short sighted, which can be corrected with prescription lenses, while some lenses can also help dampen nystagmus or reduce glare for those with photophobia.
Funding for optometry is available through medicare and for prescription glasses through private health insurance. Some of those with albinism and photophobia have had success with funding for sunglasses through NDIS in order to protect the eyes and enable functional vision when outdoors.
Orthoptists are healthcare professionals who are trained in the assessment and management of adults and children with eye movement disorders, including nystagmus, strabismus (misalignment of the eyes) and amblyopia (lazy eye), epecially in children.
Orthoptists are also able to assess functional vision and make recommendations as to the aids which may be useful to improve vision or reduce fatigue in a variety of situations – valuable to both children and adults.
An orthoptist assessment may be necessary for the inclusion of adaptive technology or equipment in an NDIS plan.
The Dermatologist is a medical doctor who has additional training in the diagnosis and treatment of skin conditions.
People with albinism produce no or very little melanin which is involved in the development of pigment, which in turn forms a barrier to protect the skin. Those with albinism lack this protection and without it will burn easily, causing long-term damage and increasing the risk of developing skin cancers.
As low vision makes it difficult to check your own skin, it is advisable for all those with albinism to have a regular (at least 2 yearly) check with a dermatologist to look for any developing problems, especially as some cancers have very little colour.
Dermatology is funded through Medicare.
Orientation and Mobility Specialist (O&M) *
The O&M is a professional who trains low vision (and blind) children and adults to move safely and independantly in or through their environment. They begin training children as toddlers, working with both the parent and the child, with more intense periods of training as they transition to kinder or school, begin catching public transport or change to secondary school.
O&M training can be valuable for adults transitioning to study or work, new environments, beginning new activities, sports or travelling for the first time. They also work with schools, employers or managers of public spaces to ensure that the environment is safe for those who have low vision or are blind.
An annual O&M assessment on the recipient’s progress may be required by NDIS for inclusion of O&M in a new plan.
Occupational Therapist (OT) *
The Occupational Therapist is an allied health worker, trained to work with the child or adult to identify difficulties in activities and then develop strategies to overcome them, which may include modifying the activity or the environment. It is helpful to identify an OT with knowledge or experience with low vision.
Together they build specific skills to enable safe participation in everyday life, including self care, preparing food, studying, working or undertaking physical activity or recreation. Young children benefit from early training in fine motor skills, as they often are not able to see exactly how things are done or need to adapt the activity to ensure safety. Adults may use an OT as they take up a new activity, change employment, begin travelling or transition to a different lifestyle or lifestage.
An annual OT assessment on the recipient’s progress may be required by NDIS for inclusion of OT services in a new plan.
Assistive Technology Specialist (ATS) *
An assistive technology specialist (ATS) assists those with low vision to develop greater independence through the use of technology, in order to perform tasks that they were formerly unable to accomplish, or had difficulty achieving.
The first step is to have an orthoptist assess your functional vision and then discuss your needs with the ATS so that they can recommend the use of specific technology or aids to meet those needs. The ATS can then train you in the use of the aids or technology and any accompanying software.
An orthoptist or ATS assessment on the recipient’s need for AT (related to vision and goals), with recommendations for essential equipment may be required by NDIS for inclusion in each plan.
Genetic counsellors have specialist knowledge in human genetics, counselling and health communication skills. In some cases an albinism diagnosis can be difficult to achieve, especially when some of the usual identifying markers are missing or unclear. When vision is fairly good (or the person is very good at adapting to low vision), some melanin is present, or Hermansky-Pudlak Syndrome (HPS) is suspected, you may need to seek a definitive diagnosis through genetic testing.
Genetic Counsellors can be found through hospitals (especially Childrens’ Hospitals) and private clinics. They work as part of a team with a clinical geneticist, to help people make informed decisions about genetic testing and interpret test results. You generally need a referall from the counsellor to have genetic testing undertaken. Some testing is done by a few laborities in Australia, but others send tests overseas.
Psychologists are experts in human behaviour who can help people change the way they think, feel, behave and react. They can support those with albinism to develop resiliencey and self advocacy skills, along with strategies to deal with continual queries or insensitive comments about albinism from others (especially strangers), with humour and confidence.
Children with albinism, especially in teenage years, become aware that they are different and sometimes struggle with socialising as they miss visual social cues due to their low vision. An educational psychologist is generally part of the staff in low vision support units for schools in each state, working with the students to develope strategies and offer guidance and support.
At some stages in life most adults experience difficulties in their personal or working lives, however when this is combined with the restrictions or fatigue of low vision, these can be amplified and a psychologist may be able to assist.
Initial visits to a psychologist are covered by Medicare, but if the maximum allowable number of visits is reached, the rest may be covered by NDIS for those with an approved plan.
The Physiotherapist is an expert in the structure and function of movement in the human body. They can assess, diagnose, plan and manage the care of patients with musculoskeletal and neurological problems.
Children with albinism sometimes have delayed muscle development if they do not move around as quickly or as far as other children due to their low vision. A physiotherapist can assess children, diagnose any issues and provide or supervise any remedial exercise programs.
Both adults and children with low vision often develop poor posture as they lean over books, tablets or fine work in order to see clearly, resulting in neck or back pain which can result in chronic injury over time. The physiotherapist can provide advice on maintaining correct posture, reducing the risk of injury and treat any current pain or postural defect.
Physiotherapy may be covered in an NDIS plan with a current assessment.
Speech Pathologist *
Speech pathologists study, diagnose and treat communication disorders, including difficulties with speaking. Children learn how to speak by hearing and watching those around them.
Children with albinism and very low vision sometimes have difficulty seeing how the mouth or tounge move or are shaped during speech, resulting in the incorrect use of some sounds and pronunciation of words. The speech pathologist can diagnose issues and work with the child to form new sounds and correct pronunciation.
Speech pathology may be covered in an NDIS plan with a current assessment.
Early Childhood Early Intervention (ECEI) Specialist *
The ECEI specialist or teacher works with parents, and children between the ages of 0 to 6, to assess early childhood development and low vision needs. They will work with you to support you and your child to make the most of their vision in those important early years, recommending other specialists as required and will help you to access NDIS.