Blind Citizens Australia invites you to share your stories and experiences of accessing services, support and information for those who are aged 65 or older. How are My Aged Care and other disability-related programs and services supporting you, a person who is blind or vision impaired? What are the gaps in what is available to you?  If there are services that you haven’t yet accessed, what is stopping you from connecting to them?

BCA is making a submission to the Royal Commission into Aged Care Quality and Safety. A royal commission is the highest level of public inquiry in Australia. Its main functions are to investigate an issue, produce a report and make recommendations to government. This work is informed by extensive input from members of the community, who are invited to share their concerns about the matter/s being investigated.

To ensure we include the views of people who are blind or vision impaired, we are asking you to share your experiences with supports, or lack thereof, for those who are blind or vision impaired and are 65 or over. We know that it is essential that our thoughts and viewpoints and recommendations that we present are backed up by examples and numbers.  Providing real life experiences and stories is the best and most effective way that we can advocate for change. We are interested in hearing from you whether or not you currently access services through the aged care system.

Some initial thoughts on topics that you may be able to include in your feedback:

• My Aged Care Assessment Process – how can this be more individualised and related to the needs of people who are blind or vision impaired?
• Focus on frailty in ageing rather than individualised disability-specific needs.  The needs of BCA members are generally related to their blindness or vision impairment, which may have been supported through disability services prior to the introduction of the NDIS.  How are these support needs being met now?
• Access to Assistive Technology.  How can you access blindness-specific supports through the aged care system?  What are the gaps in getting this support?
• Available packages and waiting lists – how does the system ensure safety and independence by making appropriate levels of support available to individuals?
• Lack of independent access to information on aged care in accessible formats – especially care plans and contracts.
• Issues with dog guide access and maintenance through My Aged Care.  What are the barriers with service providers in getting and paying for dog guides if you are 65 or over?
• Service Provider issues with high admin fees and unethical practices
• Lack of training in disability/ability awareness for aged care service providers

Please note that to ensure your privacy and confidentiality, all stories we receive will be de-identified, with all names and identifying details removed before we use it.  BCA may use your story as an example to the submission to the Royal Commission, as well as further communications with government in the future.

You can contribute to this important consultation in a number of ways.

Phone: 1800 033 660 and talk to a BCA staff member, who will take down your story with you over the phone.

If you don’t feel comfortable talking to someone over the phone, you can share your story by leaving a message through the feedback option on BCA’s phone system by selecting option 2 when calling. This can be done anonymously if you wish.

You can also email: bca@bca.org.au with the subject: Feedback on Aged Care

If you have been considering making your own personal submission to the Royal Commission, we can also assist you in that process.

If you are sharing someone else’s experience or story, you must have their permission to do so.

If you know of someone who may not get this call out for feedback from BCA but who would like to contribute, please pass on this information to them, or encourage them to contact BCA for further information.

All stories and feedback for the Royal Commission into Aged Care must be received by BCA by Monday 5^th August 2019.

Sharing personal stories may bring up feelings of distress. If you are feeling affected by this process, you can call Lifeline on 13 11 14.

Angela Jaeschke
Advocacy and Policy Manager

By Ross Miller

One of the greater changes in the lifestyle outcomes of people who are blind or vision impaired is the improvement in our ability to access education. What we know at this point in history is that technology has improved to such a degree that there are minimal disability related barriers to achieving a solid and meaningful tertiary education using the various forms of screen, audio and interactive adaptive technologies.

However, what we also know is that with the improvement in educational access, there has not been a commensurate increase in the degree of practical full-time employment. At present, the full-time employment level for people who are blind or vision impaired is reportedly around 24 per cent, less than half that of the general population. Employment levels in the regions would most likely be less than this, thus creating an even stronger catalyst for change and adjustment.

This disparity between improved technological access and static employment growth is of concern to everyone, especially our younger people seeking out meaningful and rewarding career opportunities. Meanwhile, recent analysis has demonstrated that technology is actually outstripping the labour market. Changes to working environments, work tasks, automation and increased reliance on artificial intelligence is impacting everyone in the workforce, and blind and vision impaired workers are not exempt or protected from these changes.

I have had 40 years’ experience in the larger employment sector, as a low level public servant through to an active tertiary student. I then transferred my energies, ending up with 20 years’ experience as a successful, self-employed, entrepreneurial consultant serving businesses across Australia. As people who are blind or vision impaired, I believe that:

• We need to be aware of these disruptions to the labour market and their impact on our futures;
• We need employment services to consider previously discounted pathways and options;
• When approaching tertiary education, we should consider broader options such as non-traditional commerce and industry sectors, and;
• We should take back control through becoming entrepreneurs and decision makers.

Disruptions to the Labour Market

Within my professional experience, I have observed vocational agents prompting blind and vision impaired people into a very small wedge of the job market. Roles such as switchboard operator, customer service, production or reception roles were handy and often unimaginative job targets. For deaf workers, it was the Mail or Registry Section within the Public Service. Nice, safe, non-confrontational and comfortable for management. Such locations have been called “ghetto” sites, just because the disabled worker would be given the so-called dignity of a job but then essentially hidden away and forgotten.

These jobs I have just mentioned are disappearing. Mail rooms no longer require teams due to OCR and artificial intelligence technology. Switchboards are much less prevalent now direct dial and auto-queuing is the norm. How many businesses now actually function without a receptionist? Much more common than you think. All due to changes in technology, staffing and role rationalization. Blind and vision impaired people need to address these broader labour market realities, just as does every other worker moving into the third decade of the millennium.

In the past, we’ve often been encouraged to move towards people-centred roles. But recent reports confirm that there are now too many solicitors being trained, too many psychologists and too many journalists for the Australian labour market. Consequently, all those blind and vision impaired students being prompted to these areas of study will be graduating into a labour market that is both shrinking and becoming more reliant on technology and artificial intelligence.

Employment Services Are Failing Us

In Australia, the United States and United Kingdom, I’ve also seen a trend of moving blind and vision impaired people into phone-based customer service roles. Of course, this is not universal, but it appears to be an easy option for vocational professionals. These jobs might include appointment setters, cold canvassers, warm leads and information sharing services. They are essentially all the same. Provide a phone, a computer with adaptive technology, and support the worker only to the point that they will not leave and cause a recruitment, staffing and training hole in the organisation.

There is nothing wrong with customer service roles if that is your own particular choice and that meets your needs both personally, financially and your overall vocational profile. But it should not be the default role that some vocational officers would be pushing you.

Personally, I was pushed through the NAB recruitment process for customer call centre. I felt that the blind agency vocational officer took no heed of my professional qualifications by bullying me towards this role. Dissatisfied with this pathway, I sought out and found a qualification relevant role providing triple the financial benefits and more importantly, the benefit of self-determination in a career pathway of my own choosing.

In the WorkCover universe, I saw many vocational rehabilitation counsellors push injured workers into roles such as car park attendants and customer service at local garages. It was lazy, ill-considered and mostly unsafe and unsuccessful. The individual needs proper consideration when deciding a career pathway. People who are blind or vision impaired are no different. Just pushing a person towards the “easy option” disrespects that person as well as the employer and the profession.

Having control of your own career, rather than being sent into a role that is pre-defined as being accessible and safe, would be a much more valuable outcome. In an era where the nature of work is changing so rapidly, it’s more important than ever that our employment service providers set aside their assumptions and habits, tailor their recommendations to our personal needs, and consider options they may previously have discounted.

A New Approach to Tertiary Education

There is an argument that it is time to refocus our skills set away from people oriented policy and support mechanisms to more industry and commercial sectors. The question is can you be as good a manager of systems and services as you might be of people? Can you be as great a problem solver in commerce as you might be in welfare services? Can you manage and manipulate the technologies that are going to drive our economy just as well as you currently operate your office PC?

If you want to participate in a “disruptive” commercial labour market, then you will absolutely need to consider alternative pathways. Look towards being a decision maker, an influencer, someone who takes responsibility and manages that responsibility with the practical skills of a life well lived. As traditional vocational pathways slip into the sunset or actual extinction, it is time to consider new or developing roles that are ready to be made your own.

These roles may require the completion of a Bachelor of Business, a Masters of Business Administration or similar education standard. Why not study in one of the STEM areas, Science, Technology, Engineering, Mathematics? Why not work towards these goals like other enthusiastic people in society? Why not use the skills in organisation, lateral thinking, articulate presentation and strong personal motivation to move into the larger and often competitive sectors of the workforce? Why not be the Manager of Corporate Expansion in a medium sized services business, promoting the company, generating contacts and managing teams and budgets?

There are many pathways that can be pursued. The system is there to use, the services are there to support, the research provides lists of future job options, and the establishment is there to provide opportunity. Let’s move on and insert our influence and strength into all substrata of business and government, not just the welfare sector. Become competitive for roles in Local Government and State Government and in time apply yourself to a political party influencing community policy.

Being an Entrepreneur

By 2027, it’s predicted that the majority of workers in the US will be freelancers. It’s probable that Australia won’t be far behind. There is an argument that entrepreneurship and career ownership is the way of the future, and so it should be for people with disabilities.

A UK survey last year showed that almost 50 per cent of the general public believe that a person who is blind or vision impaired would struggle to hold down a job. Former Disability Discrimination Commissioner Graeme Innes believes these outdated attitudes are the biggest barrier to our employment. But when you’re your own boss, that attitude barrier doesn’t matter. Your only limitation is your belief in yourself.

Professional exposures and the feedback from many over the past 25 years is that it has been valuable to get a “normal” job for a few years. This might take the guise of any role that is accessible based on available technologies and your own personal interests. But go out and experience the intricacies of the workplace. Absorb the lessons of workplace politics, cliques, inclusion and team mentoring and self-representation. From that point forward, the “entrepreneur” in you can develop, break out and expand beyond the confines of enforced under-achievement, managerial disrespect and societal indifference.

In 2018, Vision Australia gave me an award for a conceptual strategy I put forward as part of their Employment Ideas Survey. In that offering, I proposed a strategy outline that would identify, focus, mentor and professionally train people towards being successful self-employed “entrepreneurs”. My expectation would be that a percentage of these hard-working individuals would, in time, move toward full financial self-sufficiency and potentially employ others as part of their team, creating a cycle of engagement, development, self-reliance, opportunity and growth.

Although the initial programme would be moderate in size and resources, any success would have the capacity to expand in later years, thus snowballing the impact of self-reliance, and creating a marked improvement in employment outcomes for people who are blind or vision impaired. It is not a leadership structure, but a development towards ownership and expansion of viable business that is both sustainable and expandable.

With the advent of the truly inclusive technologies now available, many more roles are open to the potential entrepreneur. Why is it that a blind or vision impaired person should not be the driving force behind a “start-up”, or an embryonic business idea that has both financial and development opportunities? What is holding us back? In fact, it could be argued, there is nothing holding us back at all.

Why can’t one of us be a “player” in open business, a competitive force in areas such as insurance broking, in finance and banking, in digital marketing, in real estate investment, in handling SEO and platform management systems for large organisations? Why not be a competitive manager in general or specialist recruitment, maybe an operations manager in supply logistics or commercial cleaning, becoming a purchasing and procurement specialist. All these and more are areas that I believe are fully open to people who up-skill and focus on their future.

By combining personal motivations with broad thinking, a person can move towards an entrepreneurial role where they sub-contract, multi-contract and term contract utilising the highly valued skills and experience gained through years of learning and workplace exposures. By operating in start-up hubs, co-working spaces, integrating and networking with other entrepreneurs, absorbing the lessons of life and insider experience, it is clearly possible for people who are blind or vision impaired to generate new and more financially and philosophically rewarding career pathways. Many of us will pursue work in the health, welfare and caring sector and that is important, but it is also important that we expand ever deeper into the world of the broad human experience.

Combining my two primary thoughts, that of adjusting direction from person-centred education to business and operations focussed education with concepts of self-determination through embracing entrepreneurship, I believe that people who are blind or vision impaired are on the cusp of making expanding forays into actual business, commerce and industrial organisations. There are significant trailblazers that have shown us all that focus, persistence and resilience can provide strong futures. However, I believe it is time to expand the profile of blind and vision impaired workers, so that we will see them as true entrepreneurs, effective business leaders, political leaders, technology gurus, decision makers and more.

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By Janene Sadhu, NWB President

It was really good that three NWB committee members, Joyce Jones, Anne Jackson and myself, could be present at the recent BCA Convention in Hobart, and what a successful event this was! We caught up with many women’s branch members there.

The highlight for our branch was presenting the Diana Braun Aspirations Award to Robyn Bousie, a very worthy recipient from Melbourne. Robyn was not at the Convention but was live on the phone to respond to the speech I made announcing her as our award winner for 2019. For those who don’t know Robyn, she is a foundational member of BCA and worked as a librarian until her retirement from paid work in 2018. She is an elite sportswoman, has coached an Australian Goalball team and is an Australian Hall of Fame inductee for her services to goalball.

To say that Robyn is a community minded person is an understatement: she is a prolific fundraiser, undertakes roles on sporting and recreation bodies, provides opportunities for people to take a short break away by accompanying them as the sole person with some sight on trips, and is a board member of her local church.

Robyn is often the first to put up her hand for tasks requiring a volunteer. These have included taking a roving mic to an audience member, helping someone with less sight than she has get a meal or coffee, selling raffle tickets, and generally assisting people to get where they need to go at many BCA Conventions. Robyn’s hobbies include dancing, keeping fit at the gym, travelling and contributing to organisations where she feels she can make a difference.

It’s fitting to say that Robyn has known Diana Braun for many years and was one of the people Diana confided in when her health started to fail. Robyn was presented with her award certificate, decorated by artist and NWB member Katrina Taylor, in May in Melbourne. Congratulations Robyn!

Our Womentalks teleconferences continue in 2019 with an honest discussion about the practical and psychological effects of vision loss as a woman on the evening of Thursday 30 May. For further information, please email nwb@bca.org.au or leave a message for me (Janene) with the BCA office and someone from our committee will get in touch with you.   

Finally, members of our branch were very sad to learn of the deaths of three outstanding women in recent months:

Diana Braun

Diana will be remembered as a trailblazer – her career saw her writing children’s programmes at the ABC, recommending reading material for people at Shirley House and sourcing unique products for a gift shop which she operated from her home. Diana was one of the Sydney-based founding members of BCA’s National Women’s Branch and served as President of the branch for several terms. She was a talented writer, leader, mentor, presenter of magazines and radio programmes, cook, and craftswoman, where her beautiful homespun wool was lovingly knitted up to create exquisite works of art.

All who knew Diana will remember her friendship, encouragement, willingness to share valuable advice, practicality, sense of fun and love of life. Diana died after a long illness.

Lori Grosvenor

Lori served as a BCA Board member and was an active member of BCA’s Canberra and Newcastle branches. She was a tireless advocate for people with disability of all ages, with her most recent work concentrating on redressing inconsistencies and gaps in Government support for people in need of basic services.

Lori was the recipient of the Diana Braun Aspirations Award in 2015, and more recently played a leadership role in the “My Aged Scare” campaign.  Her wonderful legacy to fight to make life more equitable for older Australians who have a disability will live on through her friend and advocacy consultant Lauren Henley.

Vicki Alipasinopoulos

Vicki was an active member of our NWB committee until fairly recently when ill health prevented her continuing her work for us. Vicki was responsible for communicating with branch members, and was our project leader and contact person for violence against women activities.

She played a major role in editing the Winter 2018 edition of Aspirations, and was always available to offer friendship and sound advice to those she knew. Throughout her career, Vicki assisted many people through her work as Case Manager and Referrals Officer at Vision Australia, and she volunteered for several other organisations. Vicki was 39 when she died at home after struggling with major health issues for some time.

Our Women’s Branch sends our condolences to the families and friends of Diana, Lori and Vicki, and may these three much loved women Rest in Peace.

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By Fiona Woods

The NPC was delighted to launch the Blindness Service Provider Expectations Policy at Convention. The policy clarifies for service users and service providers what we mean when we say, in BCA’s mission statement, that we strive for “high quality and accessible services which meet our needs”.

It sets out our aspirations for entitlement to service, service delivery, product sales, communications and access to information, complaints procedures, fundraising, marketing and publicity, employing people who are blind or vision impaired, governance and leadership and service user representation and advisory bodies. We explained the policy through a dramatic presentation, scripted by Lynne Davis and performed by Lynne, Helen Freris, myself and Steve Richardson, who also provided our musical theme. The policy was later unanimously endorsed by the Convention, through a recommendation, moved by Martin Stewart (Victoria’s NPC representative).

The Board recently approved two of the NPC’s other pieces of work: the Position Statement on Mobility Parking Permits, and the Position Statement and Environmental Scan on Accessible Voting. In both areas, the Statements describe the legislative background in each state and territory. BCA supports the entitlement of blind and vision impaired Australians to a Mobility Parking Permit, should they choose to apply for one. BCA has also clarified the best way of allowing blind and vision impaired citizens a secret, independent and verifiable vote. BCA will work to change the legislation in those states which currently preclude blind and vision impaired Australians from these opportunities for community participation.

All the documents mentioned above are available on this website, or in your preferred format upon request. Please contact me if you have any questions or comments on fionapawoods@gmail.com.

The NPC’s focus is now turning to the provision of healthcare. BCA already has some useful resources and a policy on hospitals, which we intend to expand and update. I chaired a panel on “Life Hacks for Surviving Hospital when you are blind or vision impaired” at Convention, which gave some insight into the issues we commonly experience and some ideas for what a successful hospital stay might look like. Healthcare includes a range of contexts, from medical, allied health, complementary, community to preventative medicine. We will be enunciating some fundamental principles and detailing how they apply in various situations. We are looking for members’ experiences and ideas, so please share your thoughts at npc@bca.org.au.

Your representatives on the NPC have achieved a lot. I thank them for their work and look forward to creating another comprehensive and comprehensible policy. Who knows: perhaps it will culminate in another live performance.

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By Steve Richardson

At our recent National Convention, I was invited to chair a session on the issues and challenges of living with more than one disability. Possibly the most notable question raised was “why should those who identify as having one disability care about these issues?”

Another question I might ask is “why is it so important for me to label my condition?” Often when we meet to talk about disability, the concern is not around the individual cause, but focussed on areas of common impact. I have two completely different, but equally important disabilities, blindness, and fragile bone structure.

Each of these on their own has a significant impact, but the combination of the two sometimes means that I face problems and situations that others may not need to deal with.

I don’t share this story to elicit sympathy, nor do I use this forum to complain about the cards I’ve been handed. My hope is that sharing this experience will help bring about a better understanding of those of us who live with more than one disability. As we age, we may all find ourselves with additional acquired disabilities we weren’t expecting – arthritis, hearing loss, cognitive impairment, just to name a few. As my old scouting leader might have said, “it never hurts to be prepared!”

The journey to obtain the correct diagnosis of my condition has been long, and often frustrating. It has only been in the last six months that I’ve had a definitive answer. We all know the question, on every application form, every medical request from a health care professional. “Cause of blindness?” and in my case, “cause of weak bones?” Being quite different forms of disability, nobody ever suspected that they might be linked, so when my very astute GP asked whether I knew anybody else with a similar combination of disabilities, it was a red letter day.

When I finally got my answer, Osteoporosis-pseudoglioma syndrome, it felt a bit like winning the lotto. “Congratulations! You’re one in two million! You win this rare and precious genetic condition. Symptoms may include congenital blindness, and juvenile onset Osteoporosis.” Since the journey was so arduous, perhaps I should carry the letters of my new label after my name.  “Steven Lyle Richardson, OPPG!”

I grew up in Brisbane, in what would be considered a mainstream family. While my parents allowed for my disabilities, they were also determined that my life would be as rich and rewarding as that of my other siblings, neither of whom have a disability. I was punished for not doing my household chores and was as involved in just as much sibling rivalry as any other child in a similar situation. My Dad is an adventurous person, so this included a year living in Canada and six months in the US, where he taught high school industrial education. Some people at the time thought this was quite outrageous, and actually asked, “are you taking Steven?”

Mum and Dad struggled for the same answers I sought in adulthood, against a baffled medical system, against an inadequate education system, and against community attitudes that didn’t accept square pegs in round holes. Despite the best of intentions, it wasn’t long before I got the feeling that I didn’t quite fit in. Even among my blind peers, there was a difference. I had to be a little more careful, couldn’t fully participate in the rough and tumble of the sports ground or lunchtime antics for fear of a broken limb.

Things escalated during my teenage years, when the bone fractures became more frequent and severe. I was no academic genius, so my struggle to keep up with the demands of high school only intensified when I began experiencing more difficulty walking, with constant reprimands for being late to class. The final straw was a fall caused by a stress fracture while being pulled along, by a teacher, faster than I could manage. After that, I went into a wheelchair. I spent two consecutive birthdays and Easters in hospital, and at one time, had all four limbs broken within a six-week period. I felt like a real hamburger with the lot.

While the school had a special needs unit catering for blind and vision impaired students, it was completely the wrong design for wheelchairs, with steps and stairs everywhere. I couldn’t get to classes I wanted to attend because they were halfway up a building, which meant no home economics, and no music. Even extracurricular activities like Braille Music Camp, which so many of my friends raved about, were not possible because of an inaccessible environment.

At one period of time, I sat in the special needs unit all day, because there was nobody to assist me to and from classes. Nobody wanted responsibility for fear of litigation, and trying to navigate around the school myself had already led to another disastrous fall from the chair. All of this had a major impact on my socialization and well-being. I felt like a nuisance, and very much in the way.

There were lighter moments. My friends tended to congregate around me, which made me feel a bit like a king on a throne. One of them was a bit of a lark, and would let air out of the tyres of the chair, just a little each day, so that it was only at the end of the week I would realize just how flat they were.

Thankfully, I haven’t had further occurrences as severe as those of my teenage years. Apart from two femoral fractures, and a broken collar bone, I’ve come off fairly lightly. I do get aches and pains, which can sometimes be small fractures, and my knee also has Osteoarthritis. Consequently, my walking pace is usually a lot slower than average, making walking from A to B a longer process. However, walking more slowly and cautiously is beneficial, as it prevents upcoming unseen hazards, lowering potential risk of falls and fractures. Safe travel is always an innate concern.

Throughout my adult life, I continued to baffle doctors, whose only advice was that my bones are like eggshells, and that I really need to avoid falls. I first heard the name Osteoporosis-pseudoglioma from a genetics expert about ten years ago. My clever GP had the right idea. Some testing was started, but unfortunately the funding ran out, and it was discontinued. Last year, I had a serious fracture while training with a guide dog. While talking over my plight with a friend, we discussed another friend of his who had similar circumstances to mine, and he casually mentioned the name OPPG.

Coincidentally, my hospital specialists were in the process of changing my medication, and started a whole series of tests. I took that opportunity, and got them to include genetic testing for OPPG. It took a further six months, but I finally got the much sought after phone call. I could now mark my medical forms with pride!

Despite the adversity, I generally enjoy life. I work part time, serve on a number of boards and committees, including BCA, live independently, enjoy singing in a choir and jamming with muso mates. I love playing blind table tennis, and all too infrequent visits to the beach. I also like to spend time with family and friends, some of whom tell me I have a keen sense of humour. I own one house, and I’m in the process of buying another. I feel blessed to be in the position I am.

Having a second disability gives me a unique perspective on life. It’s given me the chance to be more empathetic toward those who feel unfairly judged, or even more marginalized in an already marginal community.  I’ve learned not to take the simple pleasures in life for granted, and my experiences give me courage and strength.

My situation has also taught me that it’s our differences that make us unique, and that it’s perfectly OK to be the person I want to be. I may never climb Mt Everest, or jump from a plane, but I will embrace life to the best of my ability. Steven Lyle Richardson, OPPG, will survive.

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