SSI’s community information days continue to grow

Reflecting the increasing number of attendees (almost 100), the August 19 Community Information Day was held in a University of Sydney School of Business building in Sydney’s CBD. Attendees included children and young adults with vision impairment, their parents, specialist teachers, and other support services staff.As has become something of a tradition, Save Sight Institute (SSI) lifelong patient Mr Matt O’Kane filled the roles of both MC and AV support person, despite his vision impairment (VI).“Decide your own destiny”Mr Nathan Hulls, a high school motivational speaker and youth coach who travels widely to share his experiences of overcoming adversity and disability, gave the first presentation. Although his own disability, congenital radioulnar synostos, pales alongside some of those experienced by his audience, he was not there to speak solely on his own experiences.{{quote-A:R-W:450-Q: Regardless of who and what we are, we all have our own list of likes and dislikes about ourselves. }}The stated aim of his presentation was for the audience to leave his lecture “with a bit more swagger”. Data shows that about 60% of those with a VI rain unployed, and Hulls and others seek to reduce that level considerably.He asserted we choose the version of ourselves that we present to others and therefore we should avoid blaming the deck of cards we are dealt, as an individual’s uniqueness is valuable and an opportunity. Regardless of who and what we are, we all have our own list of likes and dislikes about ourselves.His advice was to surround yourself with good and useful people, noting that, on average, a close set of five people was sufficient. He also advised his audience to learn from the mistakes of others rather than make or repeat your own.According to Hulls, success begins when you can answer the simple question, “Who am I?”. It does not matter what other people think and for an individual, each day should represent an incrental improvent over the previous day, and the world should be a better place with your input.Breakout sessionsFollowing Hulls’ presentation, the audience was divided into teen and young adult, and parent and teacher groups. Mr Peter Hickey, a Local Area Coordinator at the St Vincent de Paul Society of NSW, addressed the latter group and detailed the still complex ‘new’ world of the NDIS for young adults with low vision.{{image2-a:l-w:400}}Hickey explained that, as a national sche, the NDIS aimed to offer individuals choice and control, with the ultimate aim of offering certainty, consistency, and peace-of-mind. While he admitted there were still logistical growing pains associated with moving some 460,000 people from a state-based syst to a national one, the surfacing of new cases that did not exist previously but belong rightfully in the national syst was also compounding the probl.Hickey detailed the goals and eligibility criteria used, including simple descriptions such as ‘reasonable and necessary’, and seeking access to mainstream services and support. Funding is available for relevant household tasks, personal activities, modifications to house and vehicles, mobility and assistive technology, transport assistance related directly to ployment, social and community activities, and expenses related to therapies relevant to a disability.Not unreasonably, funding is limited to only those services related directly to the actual disability and is not intended to cover day-to-day living expenses such as food, water or accommodation. Normal education systs are expected to make reasonable adjustments to accommodate as many disabled students as possible, but not all disabilities can be catered for in mainstream schools. Help with transitioning to ployment is also offered.The NDIS is limited to Australian citizens with a permanent disability who are under 55 years of age at the time of their initial enrolment. According to Hickey, the NDIS has been fully operational in NSW since July. The two Local Area Coordination (LAC) groups are Uniting and St Vincent de Paul, while other organisations have responsibility for NDIS activities in country areas.The mainstream role of LACs is planning for individuals, subsequent plan reviews, and refinents to those plans as necessary. Funding managent can be by the affected individual or their nominee, and an appeals and complaints syst is also in place.One of the more interesting presentations of the afternoon was that given by Mr Luke Seesink, the SSI’s Patient Care Coordinator. As an orthoptist by training, he is uniquely positioned to have a good grasp of most activities at the SSI, Sydney Eye Hospital, and the acadic and research pursuits of ophthalmology in general.Seesink’s presentation revealed some of the scope, and on rare occasions, some of the ‘hidden’ powers, he has access to. The Walter and Eliza Hall Trust – a famous, Australian philanthropic organisation now more than 100 years old – provides the majority of funding for his role, which spans NSW and the ACT.{{quote-A:R-W:450-Q: Medicare fees apply to consultations and no one is ever turned away for financial reasons. }}His role is to liaise with patients, medical practitioners, other healthcare professionals, family, agencies, support services, education services, etc. to coordinate the help and services an individual might need.Seesink guides new cases along the appropriate path and is unaligned, unaffiliated, and independent. He is a conduit for referrals and feedback, and also surveys satisfaction levels.Interestingly, about 50% of his referrals never step foot inside the SSI because he can direct th along more appropriate pathways, at least initially. Given the time-poor nature of general ophthalmology practice in an eye hospital setting, Seesink’s role is often to substitute for the missing information source.He described his role as patient-focused, and he frequently finds himself explaining a diagnosis, a disease, a genetic issue and terminology, while also offering otional support. In turn, he might refer cases to counsellors, VI or low-vision specialists, or simply deal with the issue himself. On rare occasions, he has also been able to offer support outside the ‘syst’ to prevent individual cases ‘falling through the cracks’.Seesink noted that the current schools laptop program and its firewall elent makes life difficult for those wanting to install medical apps, such as those related to glaucoma, diabetes, etc. Additionally, the patient may be afflicted by a combination of issues, meaning the probl does not necessarily have a simple solution.Therefore, the importance of his role in arriving at an appropriate destination in the minimum amount of time cannot be underestimated and and the SSI should be applauded for creating such an insightful position. As SSI Patient Care Coordinator, Seesink can be contacted on 02 9382 7300, or via ssi.patientcarecoordinator@sydney.edu.au.Headspace camperdownLocated within the Brain and Mind Research Institute at the University of Sydney, Headspace is a support and information service for young people aged 12–25 who have general health, mental health, alcohol, and other drug issues. The service was detailed by Ms Vicki Papageorgopoulos, and it is hard to imagine a more suitable representative. Medicare fees apply to consultations and no one is ever turned away for financial reasons. Services offered include; GPs, psychologists, psychiatry, and mental health nurses.Patients with or without carers can be accommodated, and help with ployment and job issues are also available. Papageorgopoulus said up to one-in-four young people have mental health issues and essentially, Headspace adopts a one-stop shop approach to whatever care is required.Good mental health was defined as a sense of well-being, confidence, and self-este, leading to a full and enjoyable life that appreciates the involvent of others in day-to-day life. Protective factors were given as team sports, group activities, eating and sleeping well, seeking help as needed, exercising, and staying well informed.Stressors include; bullying, family issues, disability, relationship issues, and break-ups of relationships or family. Depression can be the result of any or a number of the foregoing. Withdrawal from family and friends was given as an obvious warning sign of probls, however sometimes the subtle differences between teen moodiness and real depression can require professional input to differentiate.The service guarantees privacy and confidentiality in all situations, except where there are risks of harm (to patient and/or associates), in which case the patient’s best interests are given priority. Gender and sexuality issues are catered for, and parental consent is not required, although the patient’s maturity might be an issue if very young.

PRESENTERS
Bart Bunting	John Grigg	Josie Grigg	Luke Seesink
Matt O'Kane	Nathan Hulls	Peter Hickey	Vicki Papageorgopoulos

An SSI updateReturning presenter, Associate Professor John Grigg, Head of the Discipline of Ophthalmology, USyd, offered the audience a brief update on his department’s activities. He noted advances in ocular imaging – especially wide-field fundus imaging and OCT – had made assessment of individual conditions and diagnosis a more refined process.He mentioned conditions of interest including Peter’s Anomaly, Stargardt’s Disease, Leber hereditary optic neuropathy (LHON), and Retinitis Pigmentosa (RP). Less common assessments included OCTA, the use of which he tipped to become more widespread, anterior segment OCT, electrophysiology (a Grigg specialty), and fundus autofluorescence (FAF).In touching briefly on the issue of driving privilege, Grigg noted that public safety transcended all other considerations and admitted the whole issue is something of a grey area. While so-called bioptic spectacles worked well in classroom situations, some reservations were held for their use while driving as studies have shown they are frequently not actually used. Generally, the SSI works closely with the UNSW SOVS Low Vision Clinic when assessing individual cases.Finally, it was with obvious pride that Grigg announced that in the most recent world rankings of ophthalmology departments, USyd ranked #6, just after the much larger UniMelb department that ranked at #4. For a country the size of Australia, it was obvious that, once again, Australia was punching well above its weight.SummaryParalympian gold medal downhill skier Mr Bart Bunting, the Centre for Disabilities Studies’ Ms Jessica Buhne, and NSW Department of Education Braille expert Ms Josie Howse were others that made enlightening and entertaining presentations on the day, all on a variety of different topics.At the end of the programme, the speakers made thselves available to the audience for one-on-one Q&A sessions, which meant patients and parents had access to quality information not readily available under normal circumstances.One cannot fail to come away with the impression that, despite the enormity of some of the probls aired during the programme (and represented in the VI audience), all is not lost and there is much hope for those afflicted with eye diseases and VI.Science, medicine, genetics, and relevant service providers have all stepped up to the mark to alleviate, as much as possible, some of the disadvantage that accompanies such conditions. Technology and other advances will also continue to eat away at the disadvantage and things can be expected to improve further. Some of those driving change were among the presenters on the day.SSI Community Information Days and services such as the SSI Patient Care Coordinator should be top of mind for those with, or caring for, vision-related disability.