Today is International Women’s Day.
A special day to celebrate women’s achievement, to lift all women up, end discrimination, to raise awareness of gender disparity and to forge a world where equality for all women exists.
The theme for this year’s IWD is #EmbraceEquity.
To women everywhere, Happy International Women’s Day.
#IWD2023
In the context of disability services, we hear the words “choice and control”. It is much like the other catch phrase, “reasonable and necessary”. Often heard, but with little to no understanding as to what it is.
I have broken this blog into 3 parts, all addressing the issue of choice and control.
1. What is it?
2. When is it?
3. How is it?
Number 1.
In the disability sector, choice and control is the way of thinking about how you arrange your supports and get the services you require.
It means having control over the course of your life and how you make decisions.
Examples:
1. Consumer choice. What sort of prosthetic foot you may choose
2. Complex choice. Adding to the mix things such as ot, physio, exercise physiology
3. Personal life choices. What you eat and what you wear.
Number 2.
I would posit that choice and control is a part of everything you do.
From what you had for breakfast, to your employment, to where you live and who you want to hang out with.
Using the 3 C’s below, you can successfully exercise your choice and control.
Clarify:
Clearly identify the decision to be made, or the problem to be solved. Be very specific in this. The more information you have, the better the identification you can come up with.
Consider:
Think about the possible choices and the consequences of each of those choices.
Again, be very specific. As Einstein stated “every action has an equal and opposite reaction”.
Choose:
Choose the best choice. This choice then becomes your decision.
A decision is defined as a conclusion reached after considering all choices.
Will you always make the best decision? Probably not, but using the 3 c’s you have a way to develop your skills in choice and control.
When all is said and done, your decision is based on your choice, giving you control over the outcome.
Number 3.
There are a few things you need to consider when exercising your choice and control.
Remember the 3 c’s, but even more importantly, develop your own self advocacy skills.
Self-advocacy is the ability to “speak up” for yourself.
Having these skills will assist you to speak up when you are meeting with your prosthetist, your support coordinator, your service provider and even your doctor!
By educating yourself, you will maintain control of conversations and situations that will arise. You will find that even though there may be a lot of choice, by understanding what information is being shared with you, you will be able to maintain composure, not become overwhelmed and still maintain control.
Let’s have a look at 3 steps that will assist you in your advocacy journey:
1. Problem analysis:
#1. What is the problem or issue?
#2. Do you need a new prosthesis?
#3. Do you need to update your plan?
2. Information gathering:
#1. What additional information do you need? Things like policy and procedures, rules, or reports.
#2. Where can you get this information? Limbs 4 life website, peer support, internet search.
#3. Find out who the decision maker is. Is it the doctor, prosthetist, Ndis planner/lac?
#4. Are there others who can help, such as an advocacy service, family, or another allied health practitioner?
3. Solution analysis:
#1. What are the possible outcomes, the specific and realistic solutions to the issue?
#2. Identify possible barriers that might get in the way of these solutions. An example of this may be inadequate funding for a particular prosthetic device.
#3. Ask what the other party will do to help find solutions to the issue.
There is an abundance of training available to learn these skills and I encourage you to have a look around and find what is suitable for you.
Finally, this is what good choice and control looks like.
It looks like better service and disability outcomes.
It looks like dignity of care.
It puts you in the driver’s seat.
It gives you flexibility to direct services.
Greater choice and control will achieve improved outcomes.
With the right information, the right education, exercising choice and control leads to empowerment, self-determination, and control over all aspects of your life.
This then gives you the best life you can live.
Sharon Boyce is PDA’s Vice President and QLD Director.
Accomplished in many areas (including but not limited to advocacy work, academia, journalism, community education and public speaking), Sharon’s creative side is another important part of who she is.
A passion for art and looking outside the norms, she loves to create beautiful art and bring her imagination to life.
In her new PDA vlog, she talks about her art and the way in which it has evolved more as her disability has created more limits on her life.
Well worth checking out on PDA’s YouTube channel:
Whilst you’re there why not check out our other videos and subscribe to our YouTube channel.
You can read PDA’s Position Statement below:
“The National Disability Insurance Scheme Act 2013 (NDIS Act) is the legislation which establishes the National Disability Insurance Scheme (NDIS) and the National Disability Insurance Agency (NDIA).
It also sets out, amongst other things, the objectives, and principles as to how the NDIS will operate, how an individual can access the NDIS and become a participant, how the participants plan will be developed and processes for internal and external review.
The NDIS Act also sets out the governance arrangements for the NDIA including its CEO, Board, Independent Advisory Council (IAC) and Actuaries.
The NDIS has been operating Australia wide for the past 9 years supporting people with disabilities to live ordinary lives, supporting people to access services and supports, supporting people to gain meaningful employment and generally increasing quality of life.
The NDIS is, essentially, a scheme for people with disabilities, but we have yet to see people with disabilities gain Senior Management positions within the NDIA. We have seen people with disabilities positioned on the NDIS Board and the IAC, but not into those senior roles.
PDA believes that the NDIS should have people with disabilities in those roles, to not only increase the representation, but to bring real life experience and understanding of being a person with a disability into the Agency that is supporting us.
We encourage the Government to do their due diligence in recruiting a new CEO for the Agency and make a positive step to rebuilding the trust of people with disabilities by actively seeking out a person with a disability for the role of CEO.
PDA invites other Australian disability organisations, NDIS participants, disability supporters and providers to join in this call for improved NDIA CEO and Board representation, participation, inclusion and input from people with disability.
For more information or to show your organisation’s support in this campaign, please contact Simon Burchill (PDA’s General Manager) via manager@pda.org.au.”
When Tammy Milne contracted COVID-19, she said she was “shaken to the core”.
Ms Milne has arthrogrophosis multiplex congenita, which affects her legs. She also has issues with breathing and swallowing.
She uses a wheelchair and has a support worker for several hours a day and overnight.
She is one of many Tasmanians for whom life will not return to “normal” when the state’s public health emergency declaration ends on Thursday night.
Three months ago, Ms Milne was in Hobart visiting her daughter when she contracted COVID-19.
She was staying in a hotel, and, once she tested positive, was unable to receive room service.
Her support worker was unable to help her, and with her daughter also COVID positive, Ms Milne said she was “trapped in a room by myself without any support”.
“It was very traumatic … I was isolated and pretty much in despair,” she said.
Ms Milne organised through the disability COVID hotline to be transported back home to Devonport in the state’s north-west where a support worker stayed with her through her seven days of isolation.
Three months on, Ms Milne said she has also contracted two other viruses, one of which required hospital treatment.
“I think if I got COVID again, I’d be really lucky to survive, and it’s a reality that it will come back again,” she said.
To read the complete article, go to:
Ratings are:
Clicking on the rating listed against each polling place will give you more information about specific accessibility features.
To find the most suitable place for you, either before or on Election Day, go to:
https://www.aec.gov.au/election/voting.htm#start
For more information around the aec’s commitment to ensure that Australians with disability or mobility restrictions are able to enrol and make their vote count, go to:
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Written by Tim Harte – PDA VIC Director to Get Young People on Board – not Bored
As a Disabled Peoples Organisation (DPO), Physical Disability Australia (PDA) lives the ethos of ‘nothing about us, without us’ – people with disabilities informing advocacy and leading the change to enable every Australian living with a physical disability to realise their full potential.
Within PDA, I see the value of lived-experience with every decision we make and the real-world outcomes achieved through our advocacy. With charities, government bodies and corporations(entities) that deliver services for and interact with, marginalised and underrepresented communities, it is both an ethical obligation and a practical necessity for the work of these entities to be informed and shaped by members of these communities, and for meaningful participation of community members to occur within decision-making structures.
Commonly, meaningful participation within decision-making structures of entities involves reference groups, comprised of members of a marginalised community, specifically focused on aspects of the entity’s interactions with a specific target group. Reference groups are great for informing operational aspects (of entities) e.g. advising on service delivery. However, input from reference groups is not sufficient. It is critical for effective, appropriate and inclusive decision-making that people with disabilities are within high-level, decision-making structures (Boards & Board committees) & staff members, with relevant, lived-experience, are employed by the entity to ensure recommendations and input from reference groups are implemented and given value in the entity’s strategic priorities.
As a young, disabled person who serves on 3 Boards, I am part of the change involving people from marginalised and underrepresented communities, with lived-experience, being part of and making a difference through active participation in high-level, decision-making structures within entities. Being part of the change is not an easy experience. It takes grit, a thick-skin, patience, determination and dedication. More focus is given to getting people with lived-experience on Boards, but the next, and equally important, step is change and action within entities to ensure people from marginalised and underrepresented communities can meaningfully participate and contribute within the Board environment. It is the challenge to ensure the voices of young and marginalised people are heard and considered within Boards, and we are not left feeling frustrated, undervalued and bored by inaction.
My experience, as a young person on Boards & Board Committees in a diverse range of sectors, has gotten me thinking about what it takes to get young people meaningfully involved in governance. Not just tokenistically to meet some predefined quota or societal expectation, but in a meaningful, valuable and respectful way. My recommendations for entities (charities, government bodies & the private sector) to implement to ensure young people on their Boards are supported to meaningfully participate and contribute, and some recommendations to young people to ponder when considering applying for Board positions, are itemised below.
Support
Properly supported, appropriately experienced young people can learn greatly from Board service and considerably contribute to informed decision-making within the Board environment.
For entities:
a) Buddying: Many Boards ‘buddy up’ new (young) Board members with existing Board members to educate them about Board processes & conduct, and most importantly to support them to feel more secure within the Board environment and enhance their ability to contribute. Things to consider include:
i) Buddying is often a short-term, ‘on-Boarding’ mechanism to provide initial support for new Board members rather than a continued, support mechanism. It is important for young Board members to have a buddy acting as a support for the duration of their time on a Board.
ii) Allocation of buddy partners should never be done without discussion with the young Board member and ideally their buddy should be their choice. Ideally, following their first Board meeting, young Board members can be asked who they would like to buddy with. Prior to allocation the Board Chairs/Presidents should act as a support.
iii) Buddy allocation should not be regarded as permanent. Young Board members get to know different Board members better throughout their time on a Board and may benefit from support of different Board members for different matters. Also, Board members may change, hence, buddy allocation needs to be flexible.
iv) Some Boards refer to buddying as mentoring, which can suggest a paternalistic relationship which may unintentionally intensify the power dynamic imbalance between existing and new young Board members, reducing open conversation and reducing the benefits of buddying.
b) Employee Assistance Programs (EAPs) are confidential external counselling programs offered to employees by employers. Not all entities have EAPs. However, many (particularly those involved in service delivery or areas involving direct interaction with the public) do have EAPs. Board members need to be able to access EAPs, yet many Board members of charities serve voluntarily and cannot access EAPs as they are not regarded as staff. Board members, during their first term, will more than likely discuss psychologically distressing matters or be in psychologically distressing situations while serving on a Board. It is important, both for the health and wellbeing of Board members and Board culture, that Board members are supported through an EAP to confidentially deal with the impact of such experiences with qualified healthcare professionals. For young Board members, who often have small and less established support networks, EAP access is a necessity.
c) Training: Training is a major part of supporting young Board members. Training has been covered further under the capacity building recommendations.
For young people:
a) Personal support: To ensure young people’s wellbeing, they should not serve on Boards unless they have a stable close support network. Young people need at least 2 people they have known for 2+ years, who have supported them in the past, to support them during their Board service. The reality of being on Boards, as a young person, is that it is not a smooth process. There will be ups and downs, and sometimes nights (after meetings) when you cannot sleep. For your own well-being you need people who know you and can reliably support you. I am lucky to have 2-4 people (2 family and 2 friends), with similar political views & shared values, who support me.
Capacity building (training)
Training serves to build the capacity of young Board members to contribute and build the capacity of all Board members to implement best practice governance and create a safe, efficient, and effective Board environment. I prefer the term ‘capacity building’ over ‘training’ as it acknowledges the exisiting capacity within each Board member. Everyone has skills, experiences and expertise from their life, work & other voluntary roles. Capacity building needs to recognise this and build on existing capacity and strengths.
For entities:
a) Assessing existing skills: Quantification of Board member’s current skills and knowledge areas is the first step to building the capacity of the Board and Board members through tailored & relevant capacity building. Commonly, skills matrixes, sometimes extended to include key knowledge areas of an entity’s work, are used to quantify (measure) different skills areas and identify weaknesses or areas where capacity can be enhanced within the Board team.
i) Quantification: To be effective, a skills matrix must be designed to prevent ambiguity in skill (or knowledge) quantification. Clear and detailed guidance must be provided around the meaning of a low, medium or high rating in a skill/knowledge area. Skills matrix quantification needs to take a similar approach to key selection criteria rankings in job applicant short listing. Skill matrix scoring scales need to be at a minimum 1 (no knowledge) to 10 (this is my profession); 1-3 rankings are meaningless. Scores need to be clearly connected with levels of understanding and proficiency -e.g. 5 (I watched a webinar on this topic), 6 (I went to a conference or did a short course on this topic), 7 (I have done an elective at University on this topic), 8-10 (I am professionally qualified in this area and have worked or work in this area).
ii) Use of skills matrixes: The skills matrix should be used by Board members/Chairs/Training Committees to identify and plan tailored, relevant training for individual Board members, as well as, identifying weaknesses in professional experience within the Board that may be remediated through co-opted Board members.
b) Sourcing training: Quality, professional capacity building is essential.
i) Inhouse training: Inhouse training is training performed by staff or Board members and has limited application and benefits. An over-reliance on inhouse training can create an unhealthy power dynamic between Board & staff members – particularly young Board members. This can also, unintentionally, recycle current, inappropriate, Board culture and practice and perpetuate unhealthy power dynamics; in turn preventing positive improvement and real, continuing professional development for every Board member. Wherever possible, external agencies should be sourced for well-planned capacity building.
ii) Sourcing appropriate capacity building: Separating the ‘waste of money’ webinars, conferences and courses from ‘value for time & money’ capacity building options can be time-consuming and difficult. I have found personal recommendations are best. I have done 4 different governance webinars/short courses – 2 free & 2 paid and would only recommend two of them for their content, relevance, cost and value. It is not difficult to find free training for charity & community organisation Board members, but it is difficult to secure a free booking with short notice. Subscribing to alerts from the Australian Scholarships Foundation, which provides regular updates on free offerings from leading training providers, is an excellent way to find relevant opportunities for Board members.
c) Relevant Capacity Building: After assessing existing skills, relevant tailored training for individual board members should be identified. Last year on a Board skills matrix, I scored lowest in the knowledge area of ‘Housing security’ and in the skill area of ‘Finance & accounting’. In response to these scores I went to an online conference on the topic of homelessness & housing security, and completed an elective subject at university on accounting, building my capacity in both these areas.
Identification of relevant training opportunities should be a formalised, transparent process within Boards and should combine information gathered from assessing existing skills with preferences of individual Board members to create a mutually agreed capacity building plan and schedule. It is important that training should not be onerous and can fit in with existing commitments and career plans of young Board members. The elective I undertook last year, counted as a credit point in my course (i.e. I was going to do the work anyway as it was relevant, and contributed to my career plans).
d) Tracking & Feedback: Tracking training completed by Board members is important to ensure accountability of mutually-agreed commitments, evaluate capacity building of training (i.e. how does training result in enhanced skill matrix) and, most importantly, to get feedback on completed training so training providers/courses can be recommended (or not) for Board members in the future. Due to the constant requirement for upskilling & refresher training and for building and maintaining the capacity of the Board, it is best if training is tracked in specific time brackets (e.g. Jan-June 2021) for each Board member.
For young people:
a) Find your own capacity building: Some Boards will view training as an annual webinar for the whole Board. For young Board members, who commonly have different skill & knowledge gaps to the rest of the Board, this approach is not ideal. Don’t be scared to search and apply for your own training opportunities. A lot of conferences offer free scholarships and free high-quality training opportunities are also available. Apply early for these opportunities as spots fill up fast.
General recommendations for young people:
a) Know the commitment you are making: Serving on a Board takes time. Make sure you read through the position description of the Board role, note down the meeting frequency, committee obligations and other time commitments if stated. For me, the time it takes to thoroughly read Board papers has been the largest time commitment. Some Boards will have a regular amount of work, 20 pages of reading/meeting, others are more variable (20-60+ pages of reading/meeting). Generally, for Board members serving in their first year, the time commitment of being on a Board is 20% greater than the amount stated in a position description.
In conclusion, don’t be afraid to put your hat in the ring, but be realistic about your current capacity and experience, be prepared to undertake additional training to build your capacity and be prepared for a lot bigger time commitment than is suggested. As a DPO, PDA is a great example of valuing the voices and input of people with diverse lived-experience. PDA actively incorporates intersectional lived-experience in decision-making and ensures young people are listened to and valued.
Written by Tammy Milne – PDA TAS Associate Director
My name is Tammy Milne. I had covid and I survived. For over 2 years now I have avoided the insidious virus like the plague! I’ve taken all the precautions. Triple vaccinated, wear a mask, hand sanitise, limit my contact with the outside world and limit who comes into my home. I have made my support workers all take Rapid Antigen Tests before commencing a shift and I have let go two workers who would not get vaccinated. The longest I spent in self isolation was 49 days. Our state government took protections very seriously and shut our borders early and for an extended period. But then the border opened on the 15th December and a tidal wave of covid washed over our little island state.
For almost two years our little state was covid -19 free and then the flood gates opened. Cases swept through towns, schools, business and homes. After being locked up at home and missing my daughter so much, she is away at University in Hobart, I booked a support worker, we packed the car and the dogs and headed to an AirBnb in Hobart. For the first five days we did outside activities to lessen the risk. We took walks, ate ice-cream on the waterfront and enjoyed the beautiful historic Battery Point, marvelling at the old buildings.
But all our safety protocols were only as good as the weakest link and unfortunately my daughter was mine. After 6 days in Hobart she tested positive to covid-19 which meant I was a close contact. By this stage I had sent my support worker home with the dogs and was relying totally on my daughter and casual support worker for support in Hobart. I had also moved to an inner city hotel to be closer to my daughter.
On the Wednesday we went out for dinner, she then took me back to the hotel and got me settled for the night and left. At 11.30pm she FaceTimed me and said that she was positive. What does this mean for us? I, at this stage was a close contact and so had to go into quarantine and rely on my casual support worker whilst my daughter was out with covid. Things started falling apart rapidly from this time on. My support worker said they did not feel comfortable supporting me as I was a close contact and they felt at risk. I assured them that with PPE, public health said that they were safer working with me than going out to the shops. I rang their union to get advice on where they stood. The Health and Public Sector Union stated that they follow and support health protocols and encourage their members to follow all mandates in their workplaces. Still they (my support worker) declined to work with me.
I was stuck! I was stuck in a hotel and couldn’t get room service into my room as I was in quarantine. They could leave food outside my room but, because of my disability, I could not physically lift the food from the floor outside. I was also unable to shower. I was stuck and stinky and hungry.
One of the management team in the hotel broke hotel protocol and brought me up some tea and toast. Her rational was, ”I have had covid only two weeks ago so I’m immune and just couldn’t leave you up here like this. It is just not moral.”
So this dire situation began to turn around when I rang my state based dedicated disability covid helpline. This happened around 1pm. I told them of the situation and thankfully the seriousness of this predicament was understood and they acted with understanding and empathy.
I received multiple phone calls throughout the day as they worked out a plan for me. Many solutions were mooted; go to hospital for the night, go to a covid care facility or go home. I wanted to go home. And so at 7.30pm a nurse from the covid hotel was dispatched in full PPE to shower me, pack my bags and hunt down some food for me as I hadn’t eaten since the tea and toast earlier in the afternoon. At 9.30pm a patient transport taxi with two lovely young volunteer ambulance folks with the St Johns Ambulance arrived, again in full PPE, to collect me and start my long journey home. I arrived home at 2am Friday morning. My support worker Michelle was in the house already to take over my care. It was deemed she was not a close contact but, as a casual contact, was given permission by the health dept to provide care for me for the next 7 days of isolation. I fell into bed and slept.
I woke the next morning feeling a bit rough and did a Rapid Antigen Test. I went from being a close contact to a positive case just like that!
After registering my positive Rapid Antigen Test, I was called by the state health department Covid@home nurse and triaged. Now going back a few months I had been working with a respiratory physiotherapist and she was concerned that if I caught covid the situation could be dire – as, like many wheelchair users, I have lower functional diaphragm muscle which is necessary to produce a productive cough and remove the risk of pneumonia. So armed with this information i was called by the Covid@home doctor who hit my covid infection hard with precautionary antibiotics, prednisolone, a preventer puffer and ventolin. I won’t lie. The first three days I felt rough -with a sore thoat, a snotty nose but no fever or temperature. I was lucky, have recovered well and am now back swimming and basically enjoying my new freedom of immunity for the next few months.
It turned out pretty well really, but there are some issues that need to be recognised. The number one being support workers and their duty of care to clients. And number two being the issue around emergency support workers in times of need.
The duty of care of support workers is to be professional, know and understand public health orders and to use and be responsible for PPE and their own safety. It is one thing to be a good support worker when times are good but, when times turn pear shaped, abandoning a client is not on! Secondly emergency support workers need to be readily available. I self manage and was so fortunate to have a support worker practically sacrifice herself to stay at my home and look after me for seven days. She was paid accordingly and it must be pointed out did not catch covid from me in the seven days. She still hasn’t had covid. She went above and beyond and her professionalism and understanding of duty of care are exemplary. However, if she had been unavailable, what measures could I have employed? Where could I find skilled workers who would take on 7 days of isolation? This is a direct question to government health departments and the NDIS. In times of need we need help and the NDIS needs to step up with solutions.
Regarding support workers in the field now, how do we instill in our workforce these moral and professional obligations to their clients? Better training, a minimum standard of education and some direct specific workforce training for support workers around their obligations and duty of care. I would suggest nothing lower than an associate diploma. Workers can work toward this on the job, but have a time frame around completion. Secondly we should pay them better. Insecure and casual work does not produce the needed professional standing that this work must aspire to. To coin the old adage, “you get what you pay for”.
In conclusion, my covid experience has exposed the best and worst in our system. The worst being the gaps in the system that do not cater for emergency support workers and the lack of training and guidance some support workers have around duty of care. However, the best far out way the worst. The care provided to me by the Covid@home team and the Disability helpline was fantastic. I was considered as an individual case and a person with real fear and distress and not just another case. I was heard and I felt very well cared for. I am thankful for the lovely patient transport girls who took on overtime to get me home and lastly my support worker Michelle. My situation is not an anomaly but a point in time and space that maybe be replicated at anytime anywhere in Australia. Fortunately for me I was in Tasmania and happened to be in the best place at the right time.
Did you miss our recent webinar presented by the NDIS Quality and Safeguards Commission or do you just want to watch it again?
Well you’re in luck because it’s now available to view on the PDA YouTube channel.
Presented by Director of Engagement, Fran Vicary, this webinar talks about the role of the Commission, its mission to improve the quality and safety of NDIS supports and services and the rights of an NDIS participant. Thank you to Fran Vicary and the the NDIS Quality and Safeguards Commission for presenting this important and informative event.
Whether you’re currently accessing the NDIS, a service provider, working in the disability sector or just interested to learn about the Commission, this webinar will give you a comprehensive insight into the NDIS Quality and Safeguards Commission.
You can view it by going to:
Whilst you’re there make sure that you subscribe to our YouTube channel.
We hope that you find this webinar informative and encourage you to fill in our short survey. It will only take you a few minutes and will greatly assist us to bring you more webinars in the future.
To access the survey, please go to:
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You are invited to PDA’s next informative webinar, “NDIS Quality & Safeguards Commission: what does it do for you?” on Wednesday March 23rd 2022:
6pm NSW/VIC/TAS/ACT
5:30pm SA
5pm QLD
4:30pm NT
3pm WA
Captioning and Auslan will be available for those who require it. Please email promotion@pda.org.au if you would like to access these services.
In her role as Director Engagement, Fran Vicary will talk about the role of the NDIS Quality and Safeguards Commission, its mission to improve the quality and safety of NDIS supports and services and your rights as an NDIS participant.
Whether you’re currently accessing the NDIS, a service provider, working in the disability sector or just interested in learning about the Commission, make sure that you join us for this very worthwhile webinar.
If you have a question that you’d like Fran to answer, please email promotion@pda.org.au or ask a question via the online chat during the webinar.
To register go to:
https://us02web.zoom.us/webinar/register/WN_ZFpu_SJLSrqFyHIu4Mfw7A
Please feel free to share this invitation with others in your network. You do not need to be a PDA Member to attend. However, if you’re interested in signing up for our FREE membership, you can join our community by going to:
pda.org.au/membership/
Thank you to Fran Vicary and the NDIS Quality and Safeguards Commission for presenting this important and informative event.
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