Support workers are NOT you friends. However, treating them as such is a trap that many people with disabilities find themselves in.
Often people with disabilities spend more time with their support workers than they do with family and friends. Support workers are there on the days that you just need to talk. They see us at our worst. They see everything. They are privileged to the most personal information about us. They are there when we make phone calls. They are in our homes all the time.
So how do we draw the line in the sand? How do we separate the worker from the friendship?
Is it our responsibility as participants to make sure we are ‘absolutely professional’ in our undertakings with support workers or is it the responsibility of the support workers themselves? Or does responsibility to set the standard lie with the companies for whom they work?
When is the line crossed?
You have a support worker’s phone number so you can message them. They go to Coles, and you have forgotten to ask them to get something. Sounds very reasonable to be able to contact them in this case.
What about Facebook or other social media platforms? You go to a show, a play or the movies together, so should you have the ability to tag the support worker? Probably not. They are paid to accompany you on an outing. They are NOT your friends.
The real danger here is, as described by support companies as ‘grooming’, that some of us participants are more vulnerable than others and the risk of grooming is real. I once heard about a participant being taken to a support worker’s house to buy a gaming console. That really set off alarm bells for me.
But then again, if a support worker had something for sale that I wanted to buy, isn’t it reasonable that I can buy it? After all it’s on the open market. It gets messy when we look at a participant’s capacity. Are they able to make resonable decisions or are they able to be coerced?
But does a one size fit all approach work when it comes to rules and professionalism guidelines? Should we always err on the side of the most stringent rules around the separation of work and friendships? This is where the potential for power imbalance needs to be really taken into consideration. Who in the relationship has the most power?
We can not label all people with disabilities as incapable of maintaining a healthy boundary with support workers, but loneliness and isolation can make the most astute of us vulnerable.
It’s food for thought! These people are the most important people in our lives, so of course we are going to bond with some of them more than others. If they were all standoffish and resolutely ‘professional’, would our lives then be that little bit less.
This also speaks to the isolation of people with disabilities, how we are excluded from friendships and why we rely on friendships with our support workers. Our needs for access make it more difficult to build relationships with those that do not have disabilities. Our differences can make others feel unsure of us, sometimes even fearful of us, making them uncertain or uncomfortable about how to simply be with us. Our society has made us different, we can be viewed with mistrust and from this our isolation and loneliness is compounded.
I have had some of the most wonderful, supportive support workers come and go in my life. Some I have developed a strong bond with. They are more like family than support workers. It is my hope that they have valued the trust and faith I have put into their care and friendship.
Life is forever moving forward and changing, and it is inevitable that some of those relationships had to end. Distance and other opportunities has seen my most loved support workers leave my life. And there in lays the issue “most loved”! I am able to separate our relationship as transient, however when we are together they are the most importantly people in my life. Sharing my highs and lows.
My capacity to separate them as workers means I have not been emotionally harmed by the loss. It is sad, but we all move forward to the next big thing. It also speaks to the quality of the support worker and their understanding that even though they are well loved, we all move on, and it has always been with happiness for the future that our relationships have ended.
I would like to thank the amazing support workers that have come and gone in my life and made it worth living. Yes, your friendships have been immeasurable to get me the hard times. Thank you Wendy, Michelle, Trenton and a host of supporting cast support workers that have made my life better. I won’t name my current support staff who also mean so much to me (the company they may work for might get antsy).
Not all support workers are created equally though, and some are just meant to be more than support workers and for a time they are best friends.
PAID OPPORTUNITY FOR SYDNEYSIDERS
The National Own It Cervical Screening Campaign is being developed by ACON in partnership with the Australian Government’s Department of Health and Aged Care, the National Aboriginal Community Controlled Health Organisation (NACCHO), the Australian Multicultural Health Collaborative an initiative of the Federation of Ethnic Communities’ Councils of Australia (FECCA), and Cultural Perspectives.
It aims to communicate the importance of cervical screening and the availability and the efficacy of the self-collect test, whilst working to encourage women and people with a cervix aged 25-74 years, (particularly those from First Nations and culturally and linguistically diverse (CALD) backgrounds), to have a cervical screen.
Raising awareness about the importance of the screening and the availability of the self-collection option, the national Own It campaign is planned to launch September 2024 and will run through 2025.
Filming will take place in a Sydney metro location in late June, and they’re specifically looking to fill the role of a person living with a physical disability.
It’s half a day of work and pays $800 + expenses.
If you’re interested, you must register by 17th June 2024.
For more information, please go to:
https://www.aconhealth.org.au/ownit_eoi
Participation makes my life worth living.
I am a joiner. I want to belong and contribute to my community.
As a person with disabilities this is really important to my health and wellbeing. It is well documented in psychology that those who are engaged and participate in a wide circle of social activities do better at health indicators, their mental health is better, their overall health is better.
So how do we encourage people with disabilities to participate?
We provide safe and accessible physical sites that allow everyone to be engaged.
The simplest of infrastructure can be a barrier to participation. How many venues have we all been to that do not have a disability accessible bathroom? Or are an accessibility fail because of that one step that stops a person with mobility restrictions from entering. It’s getting better, but there is still work to be done.
My personal pet hate is when NDIS providers offer services to people with disabilities, yet their understanding of disability diversity is limited. They simply do not think of the simple things like a bathroom for us to use. But what if it’s more sinister than that and they only want to provide services to a certain cohort of participants? That’s dark and scary to think that not only are PWD now commodified for their NDIS packages, but providers can pick and choose the easiest to service for maximum profit.
My second real concern is that the mainstream still have a lot to learn too. Now I will expose my shame and embarrassment. Recently I was fundraising for a big charity and attended the nationwide charity event in my city. I was excited and keen. I had fundraised really well and was proud of my efforts to contribute to this well deserving organisation.
The event started and I was impressed with how accessible it was. I was assured a parking spot and the terrain of the event at the start was perfect. I felt involved and proud to be contributing alongside everyone else in the community.
Then things went bad. We veered off the path at the very end and found ourselves on to a dirt track heading up a hill. It was goat country. My off road scooter was just not prepared for such an adventure and, after being grounded on a large rock, some wiring was dislodged and I found myself stuck.
Two members of the public and some volunteers of the organisation had to push me up a very steep hill and then carefully hold on to me as we negotiated the steep descent.
I felt humiliated and embarrassed that I was no longer an equal member of the event, but someone who required assistance to complete the course. It was hard work for the volunteers and the community members to get me to the finish line and I felt terrible, and truly mortified that this had happened. We left the event and I slunk off early holding my wounded self close to heal.
Always solutions based and putting my discomfort aside, I reached out to the organisation and together we developed a plan to make the event accessible next year. Organisations don’t know if we (as people with disability) don’t tell them what we need. My experience will make it better for people in the future.
So I guess my point here is that the hard work to make our world more accessible is still up to people with disability. Access is only as good as the person designing it for an organisation. If that person has limited experience with inclusion policies, or indeed if the organisation does not have an access and inclusion policy, it throws all the hard work and at times embarrassment back on to people with disabilities.
As a community we are all still learning, but I often wish that we were already there with access issues being a thing of the past and assurance that we can all contribute and be engaged in a safe and welcoming world.
Technological advances, particularly in terms of online access, have brought immeasurable benefits – allowing connections with family, friends, work and study, and opening access to services and information regardless of physical location.
Online spaces should be safe for everyone, however people are all too frequently being targeted, harassed, made to feel vulnerable and forced to leave or reduce their online engagement through the acts of others.
A report carried out by the eSafety Commissioner revealed that people with disability experience higher levels of online hate speech than Australia’s national average – 19% to 14% respectively.
A 2020 survey also highlighted the perceived risk for women with disabilities subjected to technology-facilitated abuse increased from 20.57% in 2015 to 44.3% in 2020.
In response to this, the Australian Government has launched a campaign to increase awareness of Online Safety Laws to support people who have experienced severe online abuse.
Everyone has the right to be safe online.
Online abuse in any form can be stressful for the individual and their family or community.
If you or someone you know experiences severe online abuse, please visit eSafety.gov.au to make a report and reach out for support through services such as:
If someone is in danger or requires immediate support, please call emergency services on 000.
More information on the Online Safety Act 2021, online safety risks and how to access support can also be found by visiting eSafety.gov.au.
Welcome to part two in a series of blogs focusing on some of the assisted technology and other items that I received NDIS funding for – enabling me to become a bit more independent and to continue to do the things that I like to do and, most importantly, helping me to achieve my goals.
I have been a NDIS recipient since 2018 and one of the first things granted in my first plan was a lightweight manual wheelchair. A wheelchair was one of the critical items I needed as a lower limb amputee. Many lower limb amputees are considered part time wheelchair users.
I need to use a wheelchair mainly whilst outside in the community, as a prosthetic is not an option for me and walking on crutches can be tiring at times. I also need a wheelchair to shower. I use it to transfer in and out of the shower as using crutches in wet areas is very dangerous. I also use a wheelchair to carry lightweight items as this is easier than trying to carry items whilst on crutches as both hands are needed to use them.
I do have a wheelchair that was issued through my state’s assisted tech program, but the one I was issued with was a very basic model with some minor customisation for my needs. One of the reasons I applied for a new wheelchair was that my current one had no tiedown loops to carry the chair with me in it in a wheelchair taxi or on a long-distance wheelchair accessible coach service. I found this out the hard way. Having booked a seat on a particular service, and having mentioned at the time that I needed wheelchair accessible space, I was told “no problems there”. However, when I arrived to board the coach which was “wheelchair accessible”, the coach driver took one look at my chair and said “this has no tie down loops so I cannot secure your chair and it has to go in the luggage area”. So I had no choice but to get out of the chair and use my crutches to struggle up the narrow steps into a seat.
After a great report, a couple of quotes and in very little time, I took delivery of a new HELIO wheelchair complete with many accessories including crutch carrier and an under seat luggage net to carry a small amount of shopping without effecting the centre of gravity. Most importantly it had tie down loops. The wheelchair is very lightweight and easy to fold flat for transporting in a normal car boot. It is easy to self-propel and glides smoothly on many surfaces.
Over the next year I customised this wheelchair some more with a power assist device known as a “Smoov One” that attaches to the rear of the wheelchair to assist with getting up hills or help when fatigue sets in. This device just moves the wheelchair. Steering and braking is still needed by the user, but that’s a minor issue. Another add-on was a set of off-road tires for getting across grass gravel etc if needed. I used to enjoy hiking to get to some nice locations and these wheels help me somewhat to see some of those sites again – but not all. I have an off-road Hand Cycle for more rugged areas (Check out my previous blog and video for that).
I have included a short video on some of the features of the wheelchair and I will include a video on the Smoov One power assist in another upcoming blog.
Stay tuned.
“Join Minister for the NDIS, the Hon. Bill Shorten online where he will answer your questions on NDIS reforms.
The changes will improve the participant experience of the NDIS, and bring the Scheme back to its original intent.”
PERTH NDIS COMMUNITY CATCH UP:
Tuesday 21st May at 10:45am AWST
Pamela Hilton Hotel
14 Mill Street
Perth
Minister Shorten will be answering questions in the room.
Join in-person to ask your questions or watch the event online.
To book your ticket & find out more about event accessibility, go to:
https://events.humanitix.com/ndis-community-catch-up-perth
BRISBANE NDIS COMMUNITY CATCH UP:
Friday May 24th at 11:45am AEST
Brisbane Convention and Exhibition Centre
Corner Merivale and Glenelg Streets
Brisbane
Minister Shorten will be answering questions in the room.
Join in-person to ask your questions or watch the event online.
To book your ticket & find out more about event accessibility, go to:
https://events.humanitix.com/ndis-community-catch-up-brisbane
ONLINE NDIS COMMUNITY CATCH UP:
Wednesday 5th June
WA: 2:00pm
SA/NT: 3:30pm
NSW, VIC, TAS, QLD, ACT: 4:00pm
To book your ticket, go to:
https://events.humanitix.com/ndis-reform-community-catch-up-online
Don Shiel, a digital reporter from ABC News, is currently working on a story around issues with Disability Employment Services (DES).
He’s particularly interested in hearing from people who have used a DES provider and are happy to share their experiences.
If you’re interested in telling your story, email Don at sheil.donal@abc.net.au.
Do you have a clinically complete or incomplete chronic traumatic spinal cord injury and live in or around the Gold Coast?
Menzies Health Institute Queensland is currently looking for individuals to take part in their world renowned thought-controlled cycling study.
As a non-invasive rehabilitation system for people with spinal cord injury (SCI), BioSpine combines the effect of multiple technologies and drug therapy. Current evidence suggests that electrical stimulation of muscle and spinal cord, thought-control, virtual reality, cycling, and anti-anxiety drugs could partially restore movement and sensation in people with SCI.
This clinical study assesses the long-term effects of BioSpine’s new type of rehabilitation, following a 6-month intervention, on motor and sensory function of people with SCI.
To take part, participants:
The screening procedure includes:
Participants will be required to attend the BioSpine laboratory at Griffith University Gold Coast Campus for at least 150 minutes per week (2-4 sessions per week) over a 6-month period. Training involves thought-controlled electrical stimulation of the legs for cycling.
The study will commence mid-2024.
For more information and to register your interest go to:
https://www.griffith.edu.au/menzies-health-institute-queensland/research-trials/biospine-study
Know that you’re not alone and that there are people who care and are available to give support with understanding and no judgment.
Reach out.
Whether this means speaking with a friend, family member, your GP or colleague or getting in contact with a counselling service, it is important that you do this as soon as possible.
Call:
Do it TODAY not tomorrow!
Because you’re worth it.
There is concern amongst many NDIS participants, that the scheme has been reduced to a system in which its bureaucracy is supported by a seemingly apathetic tick and flick exercise.
Unnecessary red tape, repetitive paperwork, costly reports, pigeonholing based on generalist views of disability types and an inability to consider participants’ personal cases, reveals an NDIS doomed to failure in attaining its goal to serve one of our country’s most vulnerable groups.
Whilst the NDIS Review is working towards refining (and hopefully improving) many important elements, should it actually be delving internally into its own systems?
What are your experiences, thoughts and hopes around the NDIS?
1800 732 674
