Over the last couple of months on social media, a parent shared her concerns and worry following a rejection from NDIS for her young 2 year old son who has ‘albinism’. Another parent has recently been told that her 10 year old son won’t qualify for NDIS. This week there has been discussions about ‘consumables’ and the decision makers unsure about allowing ‘self managed’ families to buy the sunscreen, hats, sunglasses…really?
Questions that have come to my mind following this issue have included:
As an experienced specialist teacher in vision impairment, early childhood and Orientation & Mobility, I would like to share with you some insight into vision, albinism and the impact it can have on a person.
“The vision loss is secondary to the discomfort and pain caused by glare. The desire to squint and shut your eyes always wins, and it is never quite enough”. (Annette Ferguson) Continuing on, “Outdoors and brightly lit environments can be very uncomfortable for a person with albinism. Sometimes too much glare can result in a total white-out,and reduce the ability to identify objects in the shade”.
"The wearing of sunglasses and sunscreen are non-negotiable, basically a requirement for all children and adults. The cost of these items for quality and protection can be higher in costs and the need for re-application of sunscreen results in the need for additional supplies. Many families of children with albinism are also required to invest in additional clothing or longer sleeved uniform items for the protection of their skin".
Vision develops from birth along with all other areas of development. Vision is a learned process. The importance of early intervention for these children with albinism cannot be understated. Learning begins from day 1 and children with albinism need guidance in enhancing the learning to ensure they too will move along achieving their developmental milestones like their peers. It will be a lifelong learning process.
Transition from the early years into school, from primary to High School, from High School to University and/or the workforce are all periods of high stress and the need for support. This can include Orientation and Mobility support, adjustment periods that require reassessments of ongoing needs, new Assistive Technology and/or updated equipment, in order to keep up to pace in their local community areas. Timely supports for the person with a vision impairment can increase their independence enabling them to socially and economically participate in their community.
Please consider the uniqueness of a person with a vision impairment, acknowledging the need for supports and in making the decision to grant approval for funding supports (NDIS on this occasion), consider the child/person on an individual basis, which may not always match generic criteria in the process.
EYES AND INDEPENDENCE
13th June 2019
International Albinism Awareness Day
The below article, a personal reflection, was written by Fiona Woods, Chair of Blind Citizens Australia (BCA)’s National Policy Council, to mark this day as well. It was posted to a VIP List in Australia.
"I am thrilled that the United Nations has endorsed World Braille Day, to be celebrated on January 4. If it wasn’t so soon after Christmas and New Year and just before two of my children’s birthdays, I would host a party for it. People who attend lots of BCA meetings will know that I get excited when I receive a Braille agenda or annual report and that I use my frame and stylus to take Braille notes on whatever junk mail I can find of the appropriate thickness. To me, Braille is not just a means of communication and the key to literacy, it is one of the threads running through my life.
My father was totally blind, so Braille was always part of our home. I understood from a young age that three of our bookshelves had been specially constructed to hold the tall, heavy volumes. They are all now full in my own home. We used Dad’s old Braille books to press leaves and, as a child totally blind by two myself, I was intrigued by all the os and owls at the end and beginning of each volume. When I started school, I found it strange that suddenly there were Braille labels at home on things like chairs and tables and plates. Now I know this was to give me the experience of feeling words, in the same way sighted children practise reading signs while walking down the street. I soon started reading whatever I could. The RVIB Burwood had a map of the Melbourne railway lines, where I learned to spell suburb names. There was a Braille globe of the world, where I learned about many countries which no longer exist. Once a week, we were allowed in to the library where I longed to find enough books for children. I joined the Braille Library at seven and was well in to my first book, “The Lion, The Witch and the Wardrobe” on the drive home. It was later a treat to walk through aisles and choose whatever you wanted to read, and today I enjoy searching Daisy titles in the same way.
I read Braille. Through school, although cassette tapes and typing became more prevalent. Braille enabled me to do maths, French, Indonesian and music. Although after school I have no more Braille texts, I relied on it to join in the choral and debating societies at university. I soon worked out that taping lectures I had already attended meant sitting through them twice, so my slate and stylus became indispensable. Using a Versabraille, an early form of Braille note taker, I was able to complete an honours thesis in history and, for the rest time ever, be able to read back what I had written before handing it in.
Once I finished official study and started work, there were a lot fewer Braille pages in my houses. Once I became a parent, I largely switched to audio books. It is hard to reach the pages over a pregnant belly and, if you sit down to read a book, it is obviously an invitation for a toddler to sit on your lap. I read small Braille books to my children, some of them given to me by other blind parents. We play Braille dominoes (they belonged to my Dad), Braille Scrabble, Braille Monopoly and Braille cards. I used Braille to read a poem at our wedding and a reading at my father’s funeral. For my birthday the following year, my sighted sister worked out how to Braille me a birthday card, which was a special connection I thought I had lost along with my father. Since then, I have received Brailled messages from my preschool children and used it as a way of introducing myself and blindness to school classes and teachers. As a volunteer breastfeeding counsellor, I used Braille. Booklets when talking to mothers over the phone and Braille notes to keep records and lead meetings. Any time I have to write an article or give a speech, I write it out in Braille first. The kids always comment if they see too many lines of the sign for for (all 6 dots are used as a form of crossing out, so that whatever was written is erased, not subtly). I have recently acquired a modern Braille note taker and thought my Braille writing skills might be rusty, but it is so much quicker for me to write on it than to speak or type. Only now that I can verify what I have written in Braille will I trust online banking or shopping.
Braille used to be a kind of secret language. It was surprising when the Sports sang a song in the ‘seventies with the line” “I’m not blind so I don’t read Braille”. Things have changed. There is now Braille on some expensive skincare, on some important medications, in buildings and playgrounds and at museums. There is an approximation of it on our money. Blind children today can read things in their environment in the same way sighted children always could. Of course there is not enough of it, but it is a start.
These days, the only Braille that arrives at my house is from BCA (thank you!), Centrelink and, with insistence, the NDIA. Braille is still everywhere in my life. It is my shopping lists; my records of my passwords that no-one else can read; it is the random phone numbers I can later never find and the appointments I need to keep; it is my favourite recipes which I copy down if I think I will use them again and it is my endless to-do lists. This is my personal reflection and I hope many of you have your own. Braille has enabled me to study, work and participate in my community.
I know that not every blind person can use Braille. Some blind people probably don’t even like it. Many blind people find ways of doing the things I have talked about without Braille and I applaud them for it. For me, though, without Braille my life would not be what it is and I hope you will join with me in celebrating World Braille Day".
We all know these days that the time spent on social media/devices/gaming is an ongoing discussion (a bit like 'Words with Friends', Multiplayer activities, Opinion Polls). I certainly use them to a large degree but know cutting down my time (on particular facebook pages, discussion groups, email forums, or unsubscribing to ones I never knew I signed up for) is important for me, my family and my business. Work/life balance is another discussion and probably needs to be ongoing to keep reminding us to stay balanced.
On my personal page, I have many friends but in addition to that, I have a connection with 22 public groups – 113,751 members in total of those groups I follow! These do include a few for personal interest, others are ‘business related’ to learn, gain information, share resource ideas, and the great temptation to respond to all that is asked or needed. You might ask why I have those groups on my personal page but it’s because having a business page doesn’t always allow me to do that and to initially join or like them, I am required to do it under my name. Below is a list of some of the groups that I am part of:
On average, 350 people follow my FB ‘Eyes and Independence’ page which I’m pretty happy with. I created a Queensland group too so that if there were posts that only really applied to local activities or information, I didn’t want to get the rest of the world too excited. The majority of the Qld group are clients or their parents or a person I know personally with a vision impairment who can offer lots of information about their experiences. This is often what I consider to be lacking – the basic information a person wants to ask another that doesn’t involve paperwork, a set appointment or a monthly wait to see a ‘specialist’. I have seen many adult clients recently and my purpose for the visit is to work on an Orientation and Mobility goal. While I’m there though, they have also had an issue arise on their phone, can no longer read their mail, questioned what was making the constant backyard noise. Being informed is important for all but to what degree is based on what personality type you are. I too, have to remember my role on this particular day (other days can be a lot broader), love to offer all kinds of assistance but I definitely want to empower them. I want that person to be able to call the library to ask about an ebook course being run. I would love to see that person meet up with another with similar vision challenges. I would love to sit there all day, discussing, planning, brainstorming ideas to enable this person to participate.
Then I realise the time, and inform the person I have to go. I might have another appointment with someone else to distribute a new cane, or it could be a flight to catch, the big drive back home before peak traffic. It all takes time. I love to share information, share my knowledge about the latest piece of equipment, the free app to use for a magnifier, refer you onto another provider who can answer a few more questions if I don’t have them all, or tell you about the next useful facebook page!
Offering my services as an individual in my specialist business, does enable me to be broad in what I offer. Goals are still required but can be discussed, changed, reconsidered, expanded on and of course achieved. I am responding to your needs and love the fact that ‘Eyes and Independence’ can offer this kind of service with a minimal waiting list, flexible hours and in a broad area of Queensland (school holidays can offer intense programs on request). Less travel of course would allow me to provide more hours directly with clients. North of Brisbane near the highway does allow me to get started on the road quickly (depending on traffic) but remember I can come to you or your child. If you have read this entire post, thankyou and you will have done so through my webpage. There are a lot more pages to view at your leisure (all created myself), just by clicking on the button to open other tabbed pages. ‘Like’ what you read, watch, and learn and I too can enjoy the discovery of another new person interested in what I can offer and share. Time’s up for my blogging – and I’m supposed to take Sundays off !
As I sit here in Room no. 18, eating my poached eggs on vegemite toast, I think back to when ‘room service’ used to be via the ‘hole in the wall’. There used to be an outside cupboard with a latch and you would hear the door open while still attempting to wake up around the time you ticked the box. I always had to make sure that where the delivery was to arrive, the view of me in my slumber wouldn’t be revealed. I’ve stayed in many motels (mostly country) and I certainly haven’t seen one of those cupboards for a long time. Room service is still an option but we do need to be clothed and feeling half decent to open the door to a fresh smiling face, who stands with the tray and hidden food underneath the metal round cover with a hole. I understand the hole is for the finger to remove the cover but I wonder if it didn’t have a hole whether the toast could still possibly be more than warm?
Over the years, hotel rooms have probably not changed that much. If a room has got a modern bathroom basin, it’s more than likely that the electric jug won’t fit very well under the tap faucet! There has to be a transfer of water to the jug to fill it to your preferred level. Lots of bathrooms now have the 3-in-1 soap dispensers on the wall which is clever but I’m not sure how the shampoo, conditioner and body wash differ from one another. I guess landfill would already have a lot of those mini bottles from motels only half used and the content beginning to dry up.
I’ve always travelled in my work and visited schools, homes, child care centres, local parks, shopping centres. It’s very hard to have a large group of people all with vision impairment in the one place! There can be the one child only that is 2 hours away from anyone else but they too are entitled to be supported.
I used to sit in motels till late at night banging away on the typewriter to ensure I was up to date with my notes and ready for the next day. I still do, with the only difference being that I type away on the laptop. Laptop is quieter and of course, if I do make a typo I can delete and also save copies of what I’ve written. Learning typing at school was the best thing I ever learnt. I have used it everywhere and anywhere – thanks to Mrs Fry (my typing teacher).
Staying in a motel is an interesting place to be. Once the door shuts, the air-con goes on, TV plays in the background, who would know what goes on in there? By the evening, there can be so many cars outside the motel rooms, some with their branded businesses wrapped all around the vehicle, others with a small company logo and others without signage, which could be a leisurely traveller. And the people are all inside their motel room doing whatever one does in a motel room? If we were to walk past a motel neighbour when unpacking the car, there might be a polite nod or hello but not often much other conversation. We’ve got to get back into ‘the room’.
If you haven’t travelled in your job, this experience may be quite foreign. It’s all a part of the service I guess. We have to stay somewhere, to support someone, who lives somewhere, further away from the office than a short trip home. Well, now that I have finished my breakfast, re-packed the suitcase, checked the bathroom for a toothbrush left behind, it’s time to head up the road a half hour to support a student transitioning to High School next year - Lots of practice and she may feel more confident about her environment when she starts there officially. The school staff and student welcome the visit and the new instruction and experience of the day. I love to see progress and be part of the process in encouraging the student to achieve success. Tonight I will head home to my house that has a few more rooms in it and definitely a few more doors. Probably in the evening, I will get back on the laptop to record the day’s events and student’s progress once I've spent time with my family and caught up.
This week is the start of International Cultural Diversity which includes Harmony Day. In other cultures and different parts of the world, children are everywhere doing lots of things, sharing times together, playing with the simplest of items, natural or manufactured – role playing, collaborating, communicating, modelling, sharing, supporting, giving, expressing, enjoying, laughing while becoming lifelong learners…
Play concepts include:
Making choices Pouring Stirring Mixing Decision making
Discriminating Identifying Building Creating Measuring
Comparing Trusting Relying Being responsible
Being safe Appreciating
Learning through doing…
Encourage ‘play’ in the environment & enable a child’s potential..
NDIS Registered Provider no. 4050011793
Kerri Weaver is a service provider for children with disabilities.