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CELEBRATING RARE DISEASE NEWSLETTER |
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Celebrating Rare Disease Day |
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Today is Rare Disease Day! "Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers." - Rare Disease Day.
Let's raise awareness about Rare Disease Day together and stride for a more inclusive and an accessible community. |
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Let's get to know Shamira
We met with the lovely Shamira this month, to share her story with the WA community and raise awareness for Rare Disease Day. This is what Shamira had to share with us...
"I am Deaf Blind and have trouble moving my body due to an extremely rare genetic condition. As far as we know I am the only one in the world with this exact condition and it does not yet have a name. Not even the Doctors know how to support me or what will happen next with my condition, so we are kind of flying solo.
But I am still adventurous, motivated and want to be involved and have a job, as this helps me be more independent."
- Shimira
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What has your experience been like, navigating life with a rare condition?
-"Most things to overcome vision impairment are auditory and physical, to overcome hearing impairment they are visual and physical, and physical disability are auditory and visual - Which makes it extremely difficult to navigate life with my rare condition.
-It has been difficult because I am not able to do things I personally want to do and achieve without significant support. I cannot engage in as many activities as most other people my age, and just having that general independence that most 18 year olds would have. Living with an extremely rare condition has meant that I have not always had the appropriate funding provided to support my needs and goals."
What have been the challenges that you have faced being a business owner with a rare condition?
-"I require support for all aspects of running a business and additional support such as marketing, budgeting and business planning.
-Having the appropriate funding that can support me to continue to develop and run my business as independently and successfully.
-Finding appropriate avenues to sell my products. Due to my rare condition, I get tired very easily and loud, busy places are difficult for me to communicate effectively. Due to the conditions of markets and the amount of work that preparing, I have not yet found a regular market to sell my products.
-Having my products sold in small stores would be more achievable for me and seeing my products displayed in community shops and offices would make me really happy."
What are some of your favourite things to do outside of your micro-enterprise?
-"I am a very adventurous and social person. I enjoy getting out into my local community, socialising, creating art and craft that involves good textures and smells, water sports, horse riding and indoor skydiving."
Where have you been recently volunteering and what do you enjoy about it?
-"I am currently volunteering at the Victoria Park Visibility Centre twice a week. I am volunteering at the Toy Library, cleaning and checking over toys before returning to shelves and assisting with cleaning and preparing the Guide Dog Donation Money boxes.
-I enjoy volunteering because it gives me the opportunity to try different activities, learn new skills and meet new people. I hope that volunteering will assist me with gaining paid employment in the future."
We'd like to thank Shamira for taking time out of her busy schedule to share her story... you can find more information about @Sham's Beauty Products on Facebook or by visiting the Solutions Centre! |
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CHOICES, CONNECTION AND SUPPORT
This month we are changing things up! We reached out to Amber from @Wheeliegoodperth to get to know her and to ask her some accessibility questions to raise awareness about participation and inclusivity to celebrate Rare Disease Day (28th February 2023).
Since 2021, Amber has been providing accessibility audits for venues and businesses in WA.
Here is what we asked her...
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What are your top 3 tips to improve accessibility beyond Australian Standards?
"My 3 top tips for improving accessibility
1. Get an Accessibility Audit with me at @Wheeliegoodpert.
2. Listen to disabled people and work with them as they live and breathe accessibility every day.
3. Be willing to change and learn about accessibility." |
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What are some of the best accessibility solutions you've seen other businesses do?
"Some of the best accessibility solutions from businesses I have worked with are simple and affordable solutions.
1. Removing clutter so it's easier to navigate a business.
2. Being prepared to change furniture or add equipment such as rails and ramps.
3. Having a screen reader on their website for easy access to people with sight difficulty.
What is the most common mistake you see businesses make, while trying to be more accessible?
"There are two most common mistakes that I have seen businesses make:
1. Not having any accessibility because they believe it's too hard and expensive.
2. Having a ramp and an accessible bathroom and thinking that is adequate enough accessibility."
What is your biggest accessibility pet peeve?
"My biggest accessibility pet peeve is mirrors in accessible bathrooms being at the wrong height for people who use wheelchairs or are of a short stature."
Thank you Amber for sharing your tips and tricks with us this month and we look forward to keeping in contact!
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This month, let's dive deeper into getting to know our newest Solutions Centre Sponsor, @Glide Products!
Over the last four decades, the Australian community has grown to trust Glides highly tailored and solidly constructed wheelchairs.
The Solutions Centre and Glide, both strive to be inclusive and supportive of the disability community. Glide Products have a wheelchair range for children and for bariatric users up to a weight of 250kg.
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Glide has a dedicated research and development program to support technology improvement and expand its product range welcoming input from both therapists and consumers. They are experienced in the Australian AT market and are developing industrial strength assisted reality solutions to support rural and remote therapists and clients who are vastly underserved. |
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We invite you to visit our Solutions Centre and check out Glide's products on display which are all FREE to trial. We have therapists next door, @Occupational Therapy Services Group, who can assist you with the right wheelchair in collaboration with Glide to prescribe the perfect wheelchair for you.
Now, here comes the fun part, Glide offers "limitless customisation, including choosing your favourite colours and most importantly to optimise your comfort, safety and mobility."
In the new year, 2023, Glide will be moving to a large modern facility. It will include a new production design layout for optimisation and automation of future production, including 3D and carbon fibre printers.
In collaboration with Glide, we plan to hold training and educational sessions, as well as offering tours to their new warehouse. Many new things will be coming in the new year with Glide including options to use their new consulting rooms with clients and their support workers. |
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Do you have any questions or a problem you want our team of experts to help you solve? We're here to help you! Just reply or send us an email and our team of experienced therapists, suppliers & engineers will work together to find you a solution!
We have had many clients ask us... "Do you provide regional trips and what services are included?"
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"We have a team of experienced practitioners providing services for NDIS, DVA, private and workplace insurers, Insurance Commission of WA (ICWA) & other Aged Care providers.
Services include: OT Driving Assessment, workplace and environmental assessments, functional capacity assessment, assessment for basic and complex assistive technology & other home based consultancy services. |
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We provide all our services to the follow areas in WA: - Perth
- Peel
- South West
- Goldfields
- Mid-West
- Wheatbelt
The different types of services we provide include:
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Driving: We provide a specialty service for people following a medical illness, disability or injury which may impact on their ability to drive. This service aims to enable people to begin or return to driving safely & legally. This service may involve a comprehensive assessment conducted by one of our Occupational Therapists who has completed a nationally recognised post-graduate driver training qualification and/or may involve driver rehabilitation with one of our specialty driver rehabilitation therapists. |
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Skill Building: We provide people-centred rehabilitation services for people following a medical illness, neurological disorder, disability, illness or injury & which may impact on their ability to complete activities or occupations around the home or in the community. Our Occupational Therapists are experienced in remediation, neuro-rehab and capacity skill building/ retraining & work with people to overcome limitations experienced as a result of their condition. |
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Home: Community base services and experienced Occupational Therapists to assess your home environment, equipment, aids and/or rehabilitation needs. We aim to enhance your safety and independence, helping you to keep an active lifestyle and your family members in their own home and community. |
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Assistive Technology: We provide assessment, trial and prescription of equipment, aids and appliances & assistive technology options to help you achieve a safe, active and independent lifestyle. We pride ourselves on our knowledge, experience and relationships with a variety of suppliers across Australia, and to provide unbiased and individualised support to find the best solutions for your individual circumstances and environment. |
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Consultancy: We also provide experienced Occupational Therapists to conduct thorough, accurate & comprehensive assessments of an individual's function following injury, trauma, illness, disease or disability. Consultations may be provided in a medico-legal capacity to identify reasonable current and future needs for both plaintiff and defendant clients." |
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For more information and enquires about our services please contact us on (08) 9332 1783 or info@oterservicesgroup.com |
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🤩Shams Beauty Products are now on display at our Solutions Centre |
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"I love massage and great smelling beauty products. I am continuing to develop my products to be accessible to everyone." - Shamira
Please contact Shamira on shamsbeauty21@gmail.com or 0414 442 958 if you would like to further information and would like to request a specific product.
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🎉Solutions Centre's 2nd Birthday Sundowner🎉 |
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Thank you to everyone who came along and celebrated Solutions Centre's 2nd Birthday with us!
We really appreciate all your contributions towards supporting the purpose of the Solutions Centre and our chosen beneficiary, Wheelchairs for Kids.
Here are some of the highlights we captured at the Sundowner! |
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Stir Crazy
- Heat resistant, battery-operated device which can be positioned in a pot or pan and will provide a continuous stirring movement to your meal. This is particularly useful for people who may experience upper limb weakness or fatigue and find it difficult to stir when cooking a meal over the stove.
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Staybowlizer
- A device to secure bowls from unwanted movement through a suction design. Useful for people with upper limb weakness and enables one handed stirring without having the bowl move underneath. |
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Wonder Sheet
- A fitted bed sheet with satin panel which sits under the user’s shoulders, back and hips. The satin fabric reduces friction usually caused with regular cotton sheets. Useful for people who experience difficulty moving their bodies in bed as a result of weakness and rigidity. |
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Evekare grab rail with LED lights - A grab rail with sound activated LED night light which turns on in low light. Particularly helpful in lowlight areas, for example at garage or garden steps. Also useful for those who get up during the night to use the bathroom and may not always remember to turn a light on first. |
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Wednesday 8th March 2023, 11 am - 1 pm
We are celebrating Internal Wheelchair Day with an Ed Session - Scripting Wheelchairs with Eddie Hoar (Product Specialist) - Glide Products!
Join us in person or in the live stream as we welcome Eddie to share invaluable insights and tips on how to script manual, power and power assist wheelchairs. The Ed session will be going live simultaneously on our @OTSG and @Glide Product's Facebook page.
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Wednesday 8th March 2023, 11 am - 1 pm Held on a Wednesday in March, May, July, September, November.
Gaining independence with meal preparation is an important task of daily living for many participants within the NDIS.🧑🍳 |
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Thursday 20th April 2023, 2:30pm - 4:30pm Join us to learn about SDA, home and living with Lauren Hart - Founder of Optimal Living Therapy. |
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