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Yep. It’s time to have that talk, about relationships and when things get physical as well.
Since having my accident, I’ve seen so many people lose their partners and experience relationship breakup after incurring their own spinal injuries. It hits people very hard, and takes a while for many to re-adjust. Some people will end up without having a partner again at all.
I am so lucky in this way. My partner has stuck with me through good times and bad ones. We survived together and overcome the hurdles of those situations, but so many people with spinal injury just don’t have this and there are many barriers for those living the single life. People deserve loving relationships; we are social creatures who value love and commitment, but so many people with spinal cord injury have no partner and nobody to share this life with. Partners support us through good times and bad, and when you have a spinal injury it’s easy to become extremely isolated when we don’t have our loved ones to keep us going.
Quite often, people will look at someone using a wheelchair and just assume they can’t have a sexual relationship. Because of the nature of relationships in our society and the high pressure for couples to be sexual, this often means people in wheelchairs are considered incapable of having any relationships at all. This are both bad assumptions. Medical science has advanced and the support is there for any person in a wheelchair, with a spinal injury, to have a family and to have a sexual relationship with their partner.
Because of the focus on sex and the frequent assumption that people with spinal injury can’t participate in it, it means a lot of people can look at us and assume we have nothing at all to offer in a relationship. I think it’s important to talk about this topic because I see so many loving people miss out on relationships because of the assumptions about what we can do, both sexual and otherwise. It is a big topic and can be a sensitive one but we need to talk about this. As a society we do need to talk about how we can change these attitudes toward sex, toward people with spinal injury. We need to talk about the ways both men and women look at people with spinal injury and about how attraction is so heavily influenced by these attitudes toward disability.
I have so many friends of all genders who have so much to share with a partner, whether in a long-term relationship or more of a casual one, who are missing out on this vital human experience because of peoples’ assumptions. I just hope that we can be able to overcome this problem of perception and see people with spinal injury as the whole, loving, and physical beings that we are.
If anyone has suggestions or feedback they’d like to share on this one, I’d love to hear from you. If you want to contact me or talk about this blog post please feel free to use our website enquiry form, email email@example.com or get in touch through Facebook.
Hi everyone. This post is another followup to my earlier blog posts, in which I discussed a particular organisation, a service provider for people with spinal injury here in Queensland.
I am so glad now that the NDIS has arrived in some parts of Queensland; it gives people with spinal cord injury (SCI) a choice to say who they would like to go with as a service provider, and the ability to choose supports that they are comfortable with. As the NDIS continues to roll-out across the state and this situation of promoting more independence for people with disability continues, more power will be taken from this particular organisation, and given to people with SCI and their families to make more informed choices for themselves. We are the ones who know what we need, who know our situation and what supports and services we need to achieve our goals. I know some of you been comfortable letting a big service provider look after you in the past, and for those who complained, those complaints often fell on deaf ears and nothing was changed by the provider. But these are things you can change yourself.
Even before the NDIS rolls out, there are other service providers out there, and once the scheme rolls out there will be even more choice. There are providers out there who will listen to you, and make sure your needs are met. The good thing with some smaller providers is that they do pay more attention to their clients. They do ask for feedback and actually respond to that feedback, trying to solve the problem as soon as they can. But with a lot of bigger providers, complaints will go unanswered. They often don’t really care who you are because they have so many clients to keep themselves going; and they already don’t meet the needs of every client they have, so one more complaint doesn’t tend to change much. For those of you with the block funding, with the NDIS rolling out, you can break out from that funding model and explore all your new options. You won’t be tied down like you were before, and will have more freedom and access to supports; the bonus part is finally being able to say exactly how your funding is spent, which I know a lot of people will appreciate.
We’re the only ones that can make this difference in our lives and our futures. We can all move forward together, making the most of this chance and stopping a long history of big service providers making our decisions for us.
If you have any feedback, please don’t hesitate to contact me or any of the Spinal Home Help team. If you need any help, we are happy to assist; you can send us an email on firstname.lastname@example.org. I look forward to hearing from you all.
Finally, the time has almost come for people with spinal cord injury (SCI) to take control of their lives and their funding in Queensland. The NDIS may mark the best opportunity we have had in recent history, for people with SCI to be able to access the best and most suitable supports for ourselves and our families. For many years our funding and livelihoods have been under the control of one big organisation, who for too long have taken large percentages of our funding for ‘administration and management fees’ and left us only enough for basic daily care. Sometimes, these fees are for supports and services that we have not even received, and will never see. Instead of using this funding for the benefit of their clients, they use it instead to build themselves into a corporate empire, to try and monopolise disability and especially spinal injury support services in this industry. They call themselves a nonprofit and come across as a caring, charitable organisation that wants to help, but in all honesty, they are just here for the money.
This organisation is run mostly by business people, and most of them are able-bodied; they have no understanding of what their clients need, which wouldn’t be so bad if they were willing to listen to those clients. Sadly, complaints and feedback seem to go nowhere, and clients are kept in the dark about their funding and their options. Those executives who do have a spinal cord injury mostly occupy board positions and don’t appear to have much involvement in the day to day running of service delivery, which is where the perspective of people with SCI is desperately needed. This organisation has been using their significant admin fees, which they receive for managing peoples’ funding packages, to invest in property all over Queensland. As the scheme rolls out across the state and more people get access to choice of provider in more areas, this organisation has positioned themselves to have a presence there already, and to access the new market of people with SCI who can afford supports and daily care for the first time.
This organisation goes out of its way to employ someone to cover every aspect of health, public relations, government and services, to become a ‘one-stop-shop’ for service delivery. The money they use to do this comes out of the funding packages of people with SCI and other disabilities, clients of the organisation, and goes toward their monopolisation of spinal injury supports. Their efforts to push out competition at every single aspect of service delivery has resulted in a very distinct lack of choice and information for people with SCI – so many are discharged from the spinal injuries unit with the belief that Queensland only has one service provider to choose from! They are so in control of the information that goes through the PA Hospital Spinal Injuries Unit, the only spinal unit in Queensland, that they effectively have control of any patient who comes through rehabilitation there. They try to recruit every patient as a client and yet they lack the staff to provide the services they promise to everybody with SCI across Queensland.
I know there are many clients, people with SCI and their loved ones, who are unhappy with the service they get from this organisation. Instead of regular support workers, sometimes a client will get agency workers from outside organisations who show up for single shifts, and it happens consistently. This causes an extra cost; if the service provider lacks their own staff and has to employ agency staff, the hourly wage is higher, and the cost for the shift is higher. This cost comes out of your funding support package, and yet clients are often not told this. They think it’s the same rate and the responsibility of the service provider to provide staff, but this isn’t the case; if the service provider lacks staff and has to employ from outside their payroll, they make you pay for the shortfall, and you often won’t even know.
I think it’s time to put a stop to this. We’ve been taken for a ride for a long time now, as people with SCI and our families too, and finally the NDIS has arrived in Queensland to hopefully put an end to this lack of choice. I know a lot of people are worried about the future, and scared that you won’t be able to handle the responsibility that the NDIS brings. It is intimidating to go from nothing to total freedom of choice, but I guarantee that getting access to an NDIS support package will be the best thing to happen to you and your family. I know sometimes we can get comfortable in one place; even with lack of service, or bad service, it can be easier to stay and deal with it than to make a big shift to a new organisation or self-management. But when you make that change, you’ll see how easy life and funding management can be if you have a decent support network, and how happy you will be.
There are many, many other service providers out there, with different support services, staff, and products. It can be very difficult to identify your own needs if you’ve spent a long time being told they don’t matter, but if you can overcome that challenge, and as long as you let your planner and the NDIS know, they can try to make it happen. You will have the control over the support, over the provider. If you self-manage, you’ll be in control of your own money and you’ll know where it’s going. With the technology available, we can be able to access anything – any service provider out there, any care staff, whether it’s the wheelchair, a support worker, a physio or an OT or any health professional you’ll need – we can connect with them, as long as we know they’re out there. For those who are from rural areas this is especially challenging – if people in the city are struggling to have choice over their service providers, it’s even harder in the countryside with even fewer of those service providers there. But you don’t necessarily need them to be in your area, for them to manage your funding, or to help you find supports. For those who struggle with self management, I know some of you will have family who can help you to manage your funding – there is plenty of room for representatives and advocates in the scheme. You can talk to someone you know and trust, and who sees your daily life, to help negotiate for your funded supports.
For those who self-manage all or most of your funding, you have almost no overhead percentage costs – it’s just you, dealing directly with the service or the support and deciding which you’d like to purchase. Some may opt for an organisation to assist with plan management but the percentage and fees taken from your funding package will still be far, far smaller than the massive chunks of funding that a lot of providers are taking now. Managing it yourself instead of giving that funding to a big organisation will mean you have more to spend on yourself, your supports, and your life.
I’ve been saddened to see the low signup in the early roll-out areas – only 5000 people with disability across the regions of Townsville, Mackay and Toowoomba have signed up to the NDIS. This is a low turnout but it’s good in one way; at least our Queensland government has even been able to move launch dates forward for Bundaberg, Rockhampton and Ipswich, to get even more people earlier access to the scheme. I’d like to make it clear, for people with SCI who are locked into block funding; you have been told for a long time that you can’t take your funding individually, and have the choice you deserve. Well, that is not true. You are eligible to apply for the NDIS if it has rolled out in your area; you can be free from the restrictions of block funding and have the flexibility to spend your funding how you need, and to achieve what you want to achieve in your life. If you live in a roll-out area and haven’t been told by your existing service provider that you’re able to change over to the NDIS, well now you know! The NDIS can make that change for you. If you don’t live in a roll-out area, it’s a good idea to start making your plans now, and learning about the NDIS. There are a lot of preparation workshops being run by different organisations – the NDIS website, Department of Disability services and the Community Resource Unit are just some of the places you can find a calendar of workshops and more information about the scheme. You can start to talk to planners and get your plan started up to 6 months before the NDIS comes into your area – that way when it rolls out near you, you’ll be ready to go. You can meet access requirements for the roll-out up to 6 months before it hits your area, so that you can begin your registration early too.
I’ve been wanting to say this for a long time, to bring awareness to everyone with SCI in QLD about the way we have been taken for a ride, what we have had taken away and how our rights and choice have been restricted by one organisation for so long. As I myself would know; I was with them from the day the QLD government started to provide funding packages for patients with SCI, to the time I changed service providers 9 years later. I couldn’t be happier, and I couldn’t be doing the work I do and living the life I live now if I hadn’t made that move to another provider. Today I am able to help people with SCI and their loved ones because I have the flexibility and the freedom to do so, to give them the information and the confidence they need to live their lives to the fullest.
If you need any help, with NDIS readiness, finding information and resources, peer support – whatever you need, please get in touch at email@example.com and we’ll get back to you as soon as we’re able.
I will post more about this topic on the coming week – please watch this page for more about the NDIS and about the organisation I spoke about above that has been dominating SCI services in Queensland, so that you can be aware of how they use your funding for their own good.
~ Malakai Tava
Hi all! Well, it’s been a hard but rewarding last few months, with the accommodation project in full swing and SHH embarking on some exciting changes in the way we organise our governance. Big things are happening!
The inaugural Golf Day Fundraiser, hosted by our generous supporters from the Entamico Foundation, was an absolute hit. Held on September 23rd at the lovely McLeod Golf Course here in Brisbane, attendance was great and all the guests had a very fun day. Players determined to be the next Tiger Woods played alongside those who were mostly interested in an excuse to zoom around in the golf buggy, and added a nice casual feel to the day. Our ambassador Petero Civoniceva generously gave his time to present some prizes at auction, and to give an insight into his work with SHH. Tim Horan also made an appearance to present some prizes as well; all the football fans in the audience were definitely pleased with these two legends of Australian Rugby, that’s for sure! We’d like to say a huge thank you from SHH to our sponsors and supporters, Entamico. You’ve made a lot of our work possible and we appreciate you organising this event for us. Together, we will make great things happen.
In terms of our housing project, we’re negotiating with the government to get access to a block of land so that we can begin building this much needed facility. They have our criteria and prospects are good, so fingers crossed for positive outcomes on that front. We have also been brainstorming some more ideas for the facility itself, and with a little extra work we think this can be something amazing. For one thing, we’re expanding the accommodation to include people with spinal cord injury who are in need of transitional housing and who are from rural and remote areas of Queensland. That way, for patients who are ready to have a weekend or overnight trial to test their strengths and gain confidence outside of hospital, we can offer accessible and supported accommodation. The same will apply for those who are ready to be discharged from the spinal unit but have to wait because their housing modifications or personal support isn’t set up at home yet. Being stuck in hospital longer than you need to be can have serious impacts on mental health and makes people feel like they can’t really get started in making their new life. With this facility, we can make sure people have every chance they deserve to get out and about, complete or begin treatment where needed, and embark on their life with spinal cord injury with as much confidence as they can muster. We also want to create as much as of a community ‘hub’ as possible, with onsite allied health professionals ready to support clients. We plan to build additional office space to rent out to folks whose health services our guests will need, such as an OT, physiotherapist, counsellors and others. We’ll also have an event and seminar space that, when we’re not using it to run our programs and workshops, can be rented out to other community organisations so that they can run their own events and programs. Skill-sharing, community initiatives and grassroots networking, that’s our goal.
We’re also very excited to announce that in partnership with Entamico, and the wonderful Tracey and Craig from DogSchool, we will be bringing one more little ray of sunshine into the lives of people with spinal injury. What support and community facility would be complete without a furry friend to offer companionship and cuddles? A delightful (but very well trained) puppy will work with DogSchool and be put through their paces, to get ready to become a therapy dog for our facility. Families, guests and staff alike will all greatly benefit from having a fluffy companion around – our carpets may not thank us but anyone visiting the facility will appreciate a judgement free and very cuddly companion, and we’re very excited to see how this develops. The prospective pup, along with 6 brothers and sisters, was born over the weekend, and Entamico will keep us posted with updates on how everything progresses. Keep an eye out for news on naming this pup! We’re sending our love to the proud new mum, Blitz, and to her very first litter. She was a trooper!
More news and updates to come: watch this space
After I’d recovered from the worst of my post-rehabilitation depression and anxiety, I started to learn more about what I could do and how I could move on with my life now. I’d faced a lot of isolation during my recovery but I was determined to break down those walls now – it was a big challenge, but I believe I came through these experiences a better person, with more understanding of life and of spinal injury. I made a conscious decision to focus on how to make things better for myself and my family, and what I’d need to do to raise awareness of spinal injury. That’s when I decided to go back to TAFE to study Community Welfare.
It was a challenge for me, especially getting up early in the morning – I had to be up at 5:30am and getting ready to make sure I’d be at TAFE by 8am. Challenging, and definitely a lot of hard work, but I am very glad for the support network I had to take me through that time. I’m also grateful for the support of my teachers, which made it easier for me to do the course. Unfortunately I got to the stage where I pushed myself too far. Being out of the house from 7:30am to 3:30pm and traveling every day, I pushed myself hard and ended up finding out my limits. The intensive routine caused a pressure sore. I was very disappointed that I couldn’t finish my degree, but I knew I had enough knowledge from my time in TAFE to work in the community in my own way. For me to recover from this setback, it took me 8 months and included a lot of soul-searching while I was stuck in bed for that time. I learned how far I could push myself– it was frustrating in one way, but at least I learned how many hours I could manage sitting up in the chair every day, and that’s a valuable thing to know.
After recovering from this time, I started work as a volunteer, presenting at schools where I would talk to the students, grades 1 through 12, all about spinal injury and prevention. I spoke to students at schools all across Brisbane for about 5 years, but I knew that it was time for me to move on and support a different group of people. I started working as a volunteer with new patients who had just incurred their spinal injury, as well as supporting their families. I felt like that was more for me, able to give my experiences and my encouragement to the patient while they were in hospital so that they would know there was life after injury, that there was hope in a place that seemed to hold no hope at all. I would talk to their family too, about how they could be able to support their loved one. I passed on information about the resources and services available out there in the community for them. I did this for about 2 years before I realised there was no way I could do this work on my own. I needed a network of fellow mentors and supporters to make this work more effective, to make sure it was having the impact it needed. After talking to so many patients and their families in the hospital it was clear there was a real need for this service.
To support newly injured clients through their recovery and through the life change after spinal injury, and to support their families as well, I set about creating this network. I spoke to supporters, ex patients and others who had been through what I had been through, and I decided we needed to set up an organisation to carry on this peer mentoring work for people with spinal injury and their families. In 2013, a group of friends and family together with myself and others with spinal injury, we started an organisation called Spinal Home Help, so that we would be able to provide more assistance and run more programs for people and their families. There was a need for programs relating to health, educational workshops, social events and more, so we started creating them.
Since starting Spinal Home Help, we’ve learned that the problems are even bigger than we thought. People who incurred their injury up to 15 years ago have been coming out of the woodwork to let us know they haven’t recovered fully from the trauma of their injury. Some who have just come out of the hospital have felt the same way, that they’re scared, unsupported and anxious about the future. While I’m not glad that so many people are in these situations, I am very glad that they are speaking up and reaching out, so that we can provide this support and reconnect them with their communities, to assist them to reach their goals and alleviate the trauma of spinal injury.
Now, Spinal Home Help is moving into another stage of our service. We’re working with the government to build wheelchair accessible accommodation for people with spinal injury and their families who normally live in rural and regional areas outside of Brisbane. These units would keep families closer to their loved ones, who need that love and support during recovery, and they can also be used as a form of transitional housing, so that people with spinal injury have somewhere to stay while their houses are being modified instead of staying in the hospital far longer than they need to. From the start, it was my aim with this organisation to give something back for people with spinal injury and their families, so they don’t have to go through what I went through with my family. We can make the life change after spinal injury a little easier, making the transition from hospital to home less stressful and providing some more understanding of spinal injury for all parties. Something I always love to do is to give back to the community and to make a difference, and I’m so proud to see that this work is making a change.
Spinal Home Help does not receive any government or recurrent funding; we’re kept afloat through the generosity of the community and the help of our supporters, as well as some donations from corporate sponsors. The organisation is run by and for people with spinal injury, our families and friends, who all volunteer their time to do this work. Spinal Home Help always puts clients and families first.
I was absolutely amazed when I woke up to hear the doctor tell me I’d never walk again. Not only was my mobility reduced so much but my ability to control other parts of my body was reduced too. My stomach muscles, bowels, bladder and most other things stopped listening to me; it took a long time and a lot of learning to get used to the new ways my body worked. When this happened, I didn’t really understand why I didn’t feel things the way I used to, especially with bowel movements. It was also a big challenge getting used to relying on someone else to help me with something like this, and it was hard not to feel a bit ashamed as well. In this society it can be pretty taboo to talk about bodily functions and it’s a shock to get used to needing assistance to go to the bathroom. It was hard to get used to the nurses rolling me over for bowel movements, especially since I had so little understanding of the actual body mechanics involved as well. I had so little knowledge at that time that I was experiencing all these new things and didn’t understand why.
When I finally recovered enough to go down to the Spinal Unit, that’s where I found out more about what I had lost and what I couldn’t control. I was frustrated and upset – I was a growing young man, passionate about my football, my physical abilities. It was greatly upsetting to have that mobility taken away and I didn’t cope very well with it at all. I asked “why me!” a lot, but I realised early on that that mindset wouldn’t really help me. Now this was my new reality, and I had to reset my way of thinking to handle such a drastic life change. For my situation, not only was the loss of the lower parts of my body very hard to handle, but I also had to cope with the loss of the use of my arms. Even something as simple as scratching my face or picking up something I wanted, it just wouldn’t happen. I won’t pretend I wasn’t extremely frustrated; it was hard to get used to relying on others 24/7 for everything including getting in and out of bed.
Once I returned home after rehabilitation, though, I almost missed the hospital in one way – I knew there would always be the nurses around to help me out with anything. But at home, with support workers only scheduled to turn up for a few hours each day; that was something else. It was okay when my wife was around – I could ask her to do things for me and obviously felt comfortable with sharing even the most intimate parts of my life with her. But when she went back to work, and I had to rely on strangers so support me in my day to day living, it was hard. Lying there waiting for the support workers to arrive is very stressful and lonely – they’re only here for a couple of hours at a time, twice a day, and there’s the long hours between shifts where I had to wait and get used to being alone. It was also stressful knowing that the support workers might even miss their shift and I would be unable to start my morning routine; that was very stressful and hard to get used to. Showers, bathroom, having breakfast and brushing my teeth all had to wait until set times, when the support workers could come to assist. Every morning, from getting up and getting showered to sitting up in my chair, it takes two hours and two support workers just to start my day. I miss being able to hop up and get ready with 5 minute showers, but it’s not like that for me anymore and I know I have to accept this new life for myself, and also the people that make it possible. My support workers start as strangers but I know I have to rely on them and so I always make a point of getting to know my staff – without them, I wouldn’t be able to get up in the morning and do what I want to do. I consider them part of my family and I appreciate them and the part they play in my life.
Even a strong man like me can tell you that it is hard to get used to the life change and to the daily routine – even I needed my faith in God to get me through everything and to adjust to the new way of living. But that’s what makes me a human being, and I know I’m still alive. Now I just appreciate every day I wake up. I’m still here and my family are all okay – that’s what makes my day and makes me do it all again tomorrow.
If you have anything you want to know about life living with spinal injury, please don’t hesitate to send me an email or contact me over Facebook. I’ll keep these posts updated with a new topic each fortnight.
The birth of our daughter was one of the most amazing moments in our lives, but it did not come without challenges of its own, and our previous problems didn’t go away either. This event brought up several new obstacles and struggles, both emotionally and physically. I couldn’t play my part on the physical side of things as a father, patting my daughter’s back when she cried, changing her nappy and helping my wife. My wife had to do all these duties. This had a great impact on my mental health – I was frustrated that I couldn’t help to ease her burdens, and sad that I couldn’t do things like hold my daughter. This combination of feelings and struggle took its toll at the time, and were difficult to overcome.
Like any other couple we had our moments – we fought over things both big and small. I won’t lie and say that everything was smooth. Things were rocky, especially those first few years, but we endured and supported each other through the tough times and I think we came through it stronger and better as a couple. I look back on what we achieved; seeing my daughter growing from crawling to walking and flourishing under our parenthood, that gave us something to keep our relationship strong not only for ourselves but for her. We knew we needed to be there for her and we gave everything our best shot. At one point we went to see a marriage counsellor, to help us realise what we needed to hold dear about our relationship and what we needed to fix between ourselves. Sometimes, we think we can handle everything ourselves, but when it gets too much it is good to reach out for help. There is assistance out there for any situation – no problem is unsolvable and I am glad we sought out that outside perspective on our problems. I don’t think we would have come this far without that counselling, and I am not ashamed of asking for that help because I have seen the value of it, and what we could achieve with it.
I cannot emphasise enough how incredible and how valuable the help of both of our families and friendship circles were. They took on some of our burdens and made it so that we could have some times to ourselves, and I am grateful for that. It was good to be able to just get away for times here and there – when we got away, we could truly see and appreciate what we had and what we had achieved for our family, and we could come back feeling refreshed. That network of family and friends was very important in our lives and I don’t think we would have done this well without their support. My wife and I committed to this relationship before we had any idea of the problems and events we would face in our future – not even our distant future, but our immediate one. We were almost overwhelmed at first as we thought we could handle it all on our own, but the combination of family, friends and professional support was what we needed to make our relationship work as we have now, and there is no shame in that. I am proud to be able to name so many wonderful supportive people, both informal and professional, who made our life together a possibility and I hope they know how much we appreciate them for it. Good relationships are the foundation of a good life and a good future, and we must nurture them.
When a partner incurs a spinal injury, many couples don’t address their problems or concerns right away. It can be especially difficult for younger people, who are still working out so much in life. Sex and intimacy are huge issues for many couples and for a young person to hear they are paralysed from the waist down, that can be a huge discouragement and cause for depression. But things are not over – you can still do everything you used to, just in a different way. This subject needs to be talked about between partners and in general. Any couple needs to be given the support and information to know they can still have sex after having a spinal injury. Doctors are there to help you find ways around these problems, and can prescribe a number of aids both medical and prosthetic to assist you in getting used to the new ways of doing things. It’s the same intimacy, just done a different way, and it’s important to focus on the possibilities rather than limitations. I speak about this because I know I need to – it’s not often discussed in the early days and there is very little information given about this topic by medical professionals during rehabilitation. It’s sad to see struggles with intimacy cause relationships to break down, especially when couples have children together, and there is not enough education about sex and intimacy available in the early days. If it’s mentioned, it’s only when you’re about to be discharged, and for couples that are facing a minimum of 6 months in rehabilitation, that can be far too late, and that relationship could easily break down in the meantime.
I understand many don’t like discussing things like sex, that it’s often considered awkward or taboo. It’s especially hard to have these discussions when you’re coping with the trauma of a newly acquired spinal injury, but while people may not say it, they are often thinking about it. I believe it’s very important to discuss this kind of intimacy in relationships early on, even in the first month of rehabilitation if you are able. It’s important to see the positives, to build a future based on mutual respect, adjustment and hard work. That can only happen if we are honest and if the appropriate education is available, instead of situations where couples are given the bare minimum of information about this issue and then, often given it too late.
All these things are what made our relationship keep working and remain strong. I’m not saying we’re problem free – we still have our moments, like any other couple. But at least we know we can deal with them now. If you’re beginning to feel overwhelmed, and think things might get out of hand, I would advise to see a professional mental health support person. They are there to help, and can assist with many problems you are facing. Marriage counsellors, therapists, psychiatrists and psychologists are all available – reaching out for this help earlier rather than later can be your saving grace, before the problems get too big for you to handle. Speak to your family members or friends if you need to, the ones who love and understand you, your needs and your situation. The ones who will encourage you to stay together and build on the healthy aspects of a relationship. Those informal networks are absolutely valuable. You could also seek out those who are in similar situations to you. Connect with other couples who are facing the same issues or who have overcome problems you are now facing – even strangers can offer amazing advice and you would be surprised how many beautiful people are out there waiting to help how they can. Peer mentors and listening posts are very important. Maintaining a balance of both professional and informal support networks can be challenging but infinitely helpful if you can surround yourself with people who can give you the encouragement you need. We share our lives and experiences as we hope it will help other couples see the possibilities in life.
Next time I will be talking about how spinal injury affected my body.
After I finally left the hospital, I faced a tough 6 months battling depression and anxiety. I finally came around with the support of my fiancée; together we overcame the struggles and burdens we faced, and I began to realise that I had more to do in life, that it wasn’t over, especially with my fiancée still by my side. When I was frustrated during my recovery, especially those early months back at home, I would take it out on my loved ones and those closest to me, blaming everyone but myself. My fiancée especially experienced a lot of that lashing out but she stuck by me, and I finally realised that I had to accept what had happened. I slowly learned to appreciate what I had and to move forward with my life. Accompanying that realisation was one of the most significant moments of my life – as a declaration of our love and commitment to each other, my fiancée and I got married.
We also made the decision to expand our family. It was a hard lesson to learn, knowing that problems don’t go away and that you just have to learn how to live day by day in a way that doesn’t let those problems overwhelm you, physically or mentally. It was difficult to work out how to manage with life in a wheelchair as well as planning for bringing a brand new little person into the world. It was not only me that had to work out how to balance this new life with our future, but my wife as well. We had many discussions, thought about it and decided that it was definitely time to extend the family, and so we did. Because of my situation with my spinal injury, IVF was our only option. It wasn’t easy – the first two attempts weren’t successful, but true to the phrase “third time lucky”, my wife then fell pregnant. Aside from my marriage, it was the first good news I’d gotten since my injury and marked an exciting but terrifying new chapter in my life.
It was a big challenge for me, not being able to do all those little things like rubbing my wife’s stomach and feeling the baby move. I could see it but not feel, and not being able to experience that or provide the physical support during her pregnancy was a struggle. But we both wanted that baby so much and were so excited to bring a new life into our family that we held strong, and our shared determination made the whole process a lot easier. We were committed, and that helped us get through a lot. I saw my wife working and having to manage so much on her own – it was a painful experience to see her have to manage so much on her own while seeing husbands in other families be able to provide more physical support than I could, but I didn’t tell her, as she didn’t need my stress on top of hers. One thing I always went back to, when the pressure got too much, was reading my Bible. It helped me to deal with all these problems I had in front of me, to give me a way to process and learn from them rather than hit a mental wall and despair. It got me to understand there is more in life.
I do take my hat off to my wife. She is so strong and always has been, taking that whole weight onto herself while I could only offer my mental and emotional support during her pregnancy. In 2007, I experienced one of the most amazing days of my life – my wife delivered our newborn baby girl. Being with her every step of the way, from the IVF treatments through pregnancy all the way up until delivery day, was an amazing experience. The cord was cut and the nurse held up my baby in front of me, and she was one of the most beautiful things I had ever seen. Seeing her cry so loudly, she was so healthy and strong. It was a big milestone in our life; now we had extended our family, and we couldn’t have been happier. After four days resting up and recovering in hospital, my wife brought our daughter home for the first time. I was so excited that I didn’t have to go all the way to the hospital to see them, that I could see them all the time.
I won’t lie, we still had to deal with a lot of things. Getting used to first-time fatherhood while I was still getting used to life in a wheelchair was a big struggle – the physical challenges were many. I wasn’t able to touch my daughter, to hold her and pat her to sleep like other fathers could. It was very hard, but I tried to deal with it and be strong not only for myself but for my wife and now my daughter. I tell you, during those days I escaped into prayer quite a lot, to find my strength and peace. Every time I did I felt better and strong enough to keep going with what I had. I knew I was lucky, and still am – I have a wife and daughter and there are many who don’t. I was grateful for my family, but things weren’t as easy as some may think. It was very hard, but I was lucky and grateful that prayer could always lift my spirits and give me focus. My faith in God played a very big part in my recovery, both physically and mentally.
If I had to offer a piece of advice that I learned from all this, I’d advise people to have a good look at the things you have in life. Look at your loved ones, friends and especially family; they struggle as you do, and just as they might not always understand your pain, sometimes you don’t understand theirs. You might be focused on what you’ve lost physically – the trick is to focus on what you have in front of you. Nurture those relationships and you can keep each other strong through the bad times. Sometimes being unable to accept that life has changed due to spinal injury can make you unable to see past yourself and unable to fix the things that can be changed. But if you can see this as just another way of living, and work with your family and loved ones to build that new life together, there is so much you can still do.
In the next blog post, I will be talking about relationships and how we deal with problems while staying strong together.
In 2003 my life changed forever in Mooloolaba, Queensland. I landed headfirst on a sandbar while swimming in the surf and ended up in a four-day coma. The experience of being in a coma was terrifying, and not something I’d ever want to go back to. When I woke up, I saw the photo of my son, which normally sat by my bedside. I thought I was at home, until I looked up and saw my fiancée Julie standing by the bed with the doctor. The doctor explained that I had stretched my spinal cord between C2 and C3, and that for the rest of my life I would need a ventilator to breathe, and that I would not walk again. Even four days after the accident I was still not out of the woods, as I’d swallowed so much seawater that my lungs had collapsed. He also said I would be lucky to be able to speak again. At that moment there were so many tubes and hoses in my mouth and nose keeping me alive that I wasn’t able to speak even if my lungs were okay.
I thought to myself that I was lucky to still be alive, and thought back on my time during a coma. I closed my eyes and slipped into silent prayer. I asked the man upstairs if he could give just one more chance to me, promising that I would be a better person. I felt relaxed and I knew everything was going to be okay. I knew that there would be a lot of hard work and hard times to get used to this new life, though, and that many challenges faced me. The first 5 months in hospital I spent in Intensive Care; every day was a challenge. The same time I was trying to survive, in my mind I was determined to beat the odds. I refused to dwell on what the doctors had said I wouldn’t be able to do, and instead focused on what I could achieve. I was determined to walk again, and to breathe unassisted.
Once, I woke up to find a nurse on my chest in the middle of resuscitating me, determined not to let me die on her watch. I had no idea what happened and for a couple of minutes I was very confused, surrounded by doctors and wondering what was going on. The nurse told me that I’d stopped breathing for a couple of minutes!
The whole time I was there, I didn’t dwell on what I’d lost because I was so determined at getting stronger in any way I could, to breathe on my own and to walk. After 5 months I achieved the first goal; my lungs finally healed enough for me to breathe independently. Learning to breathe again and also to speak was very difficult. I took the challenges in stride and my mindset was as positive and determined as ever – I was going to get down to the spinal unit to recover, I was going to get through rehabilitation, and I was going to walk out of that hospital.
While recovering, I had to reevaluate a lot of the ways I thought about the world and myself, and the things I’d taken for granted. I’d always been a very physical guy, an ex-football player and pretty active person, and now I was lying in bed relying on someone else to do everything for me. I felt like a baby, I couldn’t control bowel, bladder, body. I felt a lot of loss but was determined to stay positive at the same time, and now I have a much greater appreciation for many things. That was the start of changing how I looked at life. For example, I learned to appreciate showers. All I had in the ICU was a bed bath every day for months on end, but when I got down to the spinal unit I could finally feel the water run over my body and hear it patter on the tiles. Small things that I didn’t realise I’d missed; they can be the hardest to come to terms with but the greatest to rediscover.
I was so lucky to have the support of my then-fiancee and now wife, Julie, and my family and friends. Every day, even when I couldn’t speak, I would have someone to keep my company. It was nice to be able to hear family and friends chatting away in my room, giving me something to fight for and the drive to recover. My breathing finally improved enough for me to be transferred to the Spinal Unit, so off I went on the next phase of my recovery.
I remember the first day they tried to sit me up on a chair; I blacked out, and woke up lying in bed again, where the physio explained what happened. It would take quite a while for my blood pressure to get stronger and for me to regain enough core strength to sit properly, but I kept trying anyway. Two days and several attempts later, I finally managed to sit up in a chair without blacking up, and it was so good to see the world sitting up instead of lying down for a change. The first thing I asked was whether someone could take me outside to get a bit of fresh air, as I was feeling not a little claustrophobic The nurses and doctors were fantastic and I wouldn’t trade them for the world, but the hospital itself is not something I miss. There is a definite feeling of negativity and melancholy around, understandable, but not positive. I knew I had to make a conscious effort to challenge the negative feelings and to stay strong in my determination; the hope that I would walk out of the hospital never left me. When I went to the physio I would push myself to the limit and he would encourage my efforts. I’m telling you, I was truly sure I would walk out of the spinal unit, I was so determined.
Eventually, though, I had to come to terms with what I would regain and what I wouldn’t. I had gotten a fair amount of my strength back but not all, and I accepted that I wasn’t going to walk out after all. So I focused on the positive. I had learned so much, about myself and the world. I discovered new strengths. I had made some amazing friends in the spinal unit and we tried to make the most of our time there, having fun, cheering each other on through therapy and keeping each other focused. Several people from out of town were in the spinal unit and couldn’t see their families, so I made sure to include them when I had visitors; it felt like one big family. We all had different attitudes but we all tried to help each other. Some of the younger guys there, I understood their frustration. I was only 32 but I’d still done a fair bit in life. Some of them were only 16-20 years old. I tried my best to give them encouragement and chat with them, to make the most of it while they’re in rehab and to focus on what they’re going to get back. There is still life after rehab, after all. I saw some of them start to turn the right way and concentrate on their therapy with the determination I myself felt. But I could see it in their faces, the sadness and anger that this had happened to them when they were so young and had so much to do.
After being in rehab in the spinal unit for 4 months, 9 months after being admitted, I finally got the good news from my doctor that I was going to be discharged in a week! I was so excited, but when I told him that I didn’t have a wheelchair accessible house, I was told I’d be going to a nursing home instead. At the time, if you didn’t have great insurance or your family didn’t have the resources to care for you, that’s where you ended up. I knew it was an issue with the government and not the doctor, and that he didn’t have much of a choice, but I was so surprised. That’s just what the system was like for people with spinal injury at the time. I thought to myself, I’m probably here for a reason, to change things for the better and to change the system not only for myself and my family but the other people with spinal injury who would come after me and who deserved to be able to live in the community with their families.
That’s when I decided to take up a campaign to change this system for the better. Myself, my support network and the other guys in the spinal unit all got together to figure out what we could do to change things. Spinal Life Australia, then called Spinal Injuries Association, had come on board, and had arranged a meeting with the Minister for Disability on our behalf, at a building across the road from the hospital. Together with the CEO and executive of Spinal Life Australia, myself and the guys from the spinal unit met with Warren Pitt to discuss our requirements, and he seemed to listen. A fortnight later, Spinal Life Australia withdrew their support from our campaign. I was very disappointed that an organisation dedicated to helping people with spinal injury would come to that decision, but we pushed on with the campaign without them. It came to the time where the other guys in the campaign were ready to be discharged, as there was pressure to get the beds in the ward freed up for new or transferred patients. All but one of them were sent home with no care or support beyond what their family could scrape together. I was determined that they get the support they deserved, so on my own I took the campaign to the next level and went on a hunger strike in protest. The media got hold of my story, and it ended up on Channel 10 and Channel 9’s A Current Affair. Shortly after that, my fiancée got a call from the Minister of Disability’s office with an offer. Upon inspection of the document they gave me, I realised that the offer to provide my home modifications and support was only given to me, though we had all campaigned together to get support for all the patients. That was unacceptable, so I refused, and sent the offer back.
Three days later, the Minister’s office got in touch with me again, and they finally agreed that the situation for people with spinal injury was unacceptable. To my great relief it was announced on the news that afternoon that all people with spinal injury would receive a funding package and the support to ensure we did not get sent to nursing homes any longer. I was proud to have played a part in that important campaign and to be able to change things for the better, not only for myself and my now-wife but all those who came after me in the Spinal Unit. At this point, Spinal Life Australia reappeared, and offered to be my service provider for my care and modifications. I was so impatient to get out of the hospital and home again, I agreed. I was discharged from the hospital in 2004, and even though I didn’t walk out of that hospital after all, we did make a huge difference for the future of people with spinal injury and their family in Queensland.
When I was discharged, I thought I was ready for what was out there in the community, but there were more challenges to face than I’d thought. But my hope to walk again is not gone; nothing and nobody will take that from me. Next week, next month, next year – I’m working with what I have now, but I haven’t given up that goal. I’ve just found a way to live well while I work towards it, and that’s the real challenge.
You can read more about those adjustment challenges in our earlier blog posts.
A huge part of Spinal Home Help’s commitment to improving the quality of life for people with spinal injury is our focus on supporting not only the individual but their family, friends and loved ones as well. We understand the importance of informal networks; the benefits of having friends and family around to provide emotional and mental support, especially during the early days of rehabilitation, are inestimable. But having the resources to take time out of our busy schedules AND travel to the spinal unit our loved ones are staying in – that can be tough to manage, especially for rural families.
Spinal Home Help would like to see greater support for the families of people with spinal injuries, especially those from rural and regional areas, and to facilitate this we’re launching a fairly ambitious but necessary project. Teaming up with VIP Access, SHH is in discussions with government bodies to negotiate the use of a block of land as close to the hospital as possible, in order for us to build a fully accessible accomodation house. This four bedroom house will provide accommodation for the families of those people with spinal injury who are undergoing rehabilitation in the Princess Alexandra Hospital, enabling them to spend time with their loved one and providing company and support for them as they recover. Flights into town are expensive enough and then comes the challenge of finding somewhere reasonably priced and close by the hospital; these financial barriers are simply too much for many rural and regional families. We’d like to change that, at least for some.
The house will be fully accessible, featuring the latest in home modifications to make the place as wheelchair-user-friendly as possible. That way, when they’re ready, the person with a spinal injury can come to visit their family at the accommodation with the knowledge that they will be able to fully access all features of the house, like the accessible bedrooms and bathrooms, and try out assistive gear like hoists, showers and more. It will also be a great opportunity for folks to try out assistive technology in the house – things like climate and electronics control systems, cookware, televisions and more will be available to try out as they become available for us to install in the house. We’ll also keep resources like flyers and brochures from a wide range of suppliers on hand, and arrange visits from our peer mentors when desired, so that folks can explore the range of available wheelchairs, powerchairs, vehicle and housing modifications and other items.
Ultimately, this house will serve a three-fold purpose. Firstly, to give families the chance to stay close to their loved ones, where distance and money would have been barriers before. Secondly, to give individuals some encouragement and freedom during their stay in the spinal unit, while ensuring they visit a safe and controlled environment during their healing stage. Thirdly, the more knowledge someone has before they head home for good, the better. Our peer mentors can encourage you and your family, helping you to adjust and engage with your community, give you tips and tricks for making life a bit more comfortable, give you ideas for how you might like to modify your own home and some preparations you’ll want to make before you leave rehabilitation in the spinal unit.
SHH is working with our sponsors and partners to secure funding for this project, but every little bit counts. We are staffed by people with spinal injury, family and friends, and all volunteer their time to support the organisation; we rely on community support and the generosity of others to provide all our services. If you’d like to contribute to this project and to helping us maintain our free programs and events, you can donate through our Everyday Hero profile by clicking the donate now button on the banner. If you could write a letter of support for this project outlining why you think this is a vital resource for the families of people with spinal injury, we would love to hear your thoughts. We appreciate and celebrate all our volunteers and always welcome both new individuals and new organisations who want to come on board at SHH as well.
When it comes to big life changes, few things can be as shocking and difficult to get used to as having a spinal injury. Adjusting to your new situation when you’re still going through rehabilitation in hospital is one thing – people are usually around to assist you, there are tests and sessions and therapists to get through and often friends or family hovering around to keep you company. The hospital buildings are usually accessible, which makes it easy to take getting around easily for granted. It’s like a whole other world within that spinal unit. When you come home, though, that can be something else entirely.
When I first came home after my stay in the spinal unit, my first feeling was relief. It was so nice to be in my own space, to get out of the rigmarole of the hospital. Friends and family were around for the first little while and for the most part I was just very happy to be home. But when family goes back to work, and friends can’t come by as often, the real challenge sets in. That’s the challenge of getting used to life with a spinal injury, to facing yourself and the decisions you’ll need to make about where your life goes from here.
Those first few weeks getting used to being on my own, to being in the wheelchair I would rely on for the rest of my life, was a very challenging experience. I’d lost the physical side of things but mentally I was as active as ever, and having to work out how to live a full and happy life in these new and strange circumstances. I had wonderful family around for emotional support but deciding where to go from here was all on me. The reality of my situation started to sink in.
I got frustrated. I felt isolated and scared – I won’t lie, suicide was in my thoughts as well. But I am grateful for my personal belief in God. For myself, my faith helped me work through these feelings and gave me something to hold onto – it was simultaneously a thing that gave me escapism and a thing that gave me the courage to deal with things in my everyday life. I am lucky to have this faith, and to have a great deal of hope in the future, though not everyone does. Things may be dark today, but finding that one thing to keep you going and to inspire you for the future is very important. You must find a way to live and find the thing that keeps you going, whether it is faith, or a personal goal, or just a lot of self-determination.
For myself, I would not be here today without my faith in God. That belief and focus kept me going through some very dark times, and gave me the courage to pursue my life with renewed strength. Having something to fall back on in hard times is vital and only you can work out what that is, but that journey of self-discovery doesn’t have to be a lonely one. Next time, I will be talking about the struggles that I faced in making and keeping relationships with my family and loved ones strong, and what helped me to maintain my marriage, juggle family and handle everyday life.
If you have any questions please don’t hesitate to email us on firstname.lastname@example.org – our contact details can be found here on the website.
Spinal Home Help has been very busy over the past few months and our volunteers have been hard at work. The first quarter of the year saw some exciting developments and the planning of many great events for our clients, friends, supporters and the wider community!
Our hydrotherapy program has been renewed and is well underway – Greg Taylor of GT Physiotherapy is doing a fantastic job with these weekly sessions, and attendees are enjoying the range of relaxing stretches and exercises. SHH is proud to be offering hydrotherapy free of charge to participants, to promote health and community inclusion. It’s been a handy opportunity to meet people and reap some health benefits at the same time!
Also happening this month of May is the four week art program that our wonderful OT and Access Arts developed together for people with spinal injury. Participants can enjoy meeting new people and catching up with old friends while they learn new skills, practice old ones and make some beautiful art. Running every Monday of May, we’ll be hosting the sessions at the Moorooka Community Centre, so come along and see what you can create. We’re very excited to see the results, but remember that the journey is just as important as the destination.
On the social side of things, SHH will be taking some folks along to Australia Zoo in late May. This day trip has been planned by us and transport pre-arranged, so just bring money for your entry fee and lunch (or bring your own) and bring along a carer if you need. Meet us at SHH in the morning and we can all head to the Sunny Coast for a fun day checking out all the weird and wonderful wildlife. Crikey!
We know it’s a while until the NDIS rolls out in Queensland, but there’s no reason we can’t make sure we’re well prepared! Teaming up with YFS, Spinal Home Help will host two NDIS readiness sessions in early-mid June. The first offers people with a disability, family, friends and carers participant-focused information, encouraging folks to think about how they can utilise the NDIS most effectively and make sure that the scheme will support their needs, wants, plans and dreams. A week afterward we will be hosting a trainer-focused information session, to teach anyone who wants to assist others to understand the NDIS. Whether you’re an advocate, carer, family member or friend, or someone who’s just plain keen to help, this session will give you the skills and information you’ll need to help others prepare for Australia’s exciting national healthcare initiative.
SHH is proud to host these events free of charge for our participants and to provide many different ways to stay happy, healthy and entertained. We hope you’re all doing well and enjoying the cooling weather; check this space for updates and have a look at our calendar for times and dates for all the events mentioned here.
Lastly, we are VERY excited to announce that SHH is teaming up with the TAM Foundation and VIP Access and embarking on a housing project. We are in the process of negotiating with government bodies for a plot of land so that we may build an accommodation house for rural families who are visiting Brisbane. The first few months of anyone’s rehabilitation after having a spinal injury are the hardest, and it’s vital for folks to have support, family and friends close by them during this time. Unfortunately for many rural families, it’s near impossible to find somewhere affordable to stay close by in order to visit their loved one while they stay in the Princess Alexandra Hospital Spinal Unit. This accommodation house will change that, allowing one or two families at a time the opportunity to stay in affordable, fully accessible accommodation close to the hospital, so that they are not far from their loved one. Watch this space for more updates on this project.
The already stressed housing sector of Queensland is being challenged further by the four guiding principles of the NDIS: Rights, Choice, Inclusion/Diversity, and Control. More than 100 000 Australians are homeless, and many more are struggling to meet housing repayments or their rent. Affordable housing is lacking, even before considering the extra challenges faced by people with a disability; we are more likely to be renters than those without disabilities already, and must face the reality of landlords with no legal obligation to modify their premises to make it more accessible.
It appears that the three main issues people with disability are facing in the search for accessible, comfortable housing – lower income, services limited by location, and the reluctance of those to leave their accommodation where they have had modifications made for accessibility. Hopefully, the NDIS will encourage a crop of new or existing service providers in more locations, including regionally, and the various employment initiatives under the scheme can help to increase the average income of people with a disability. In the coming years the NDIS has the potential to create a large cultural shift in the way people with disability are treated and valued in the community, and can help to indirectly address housing issues this way. However, for many people in Queensland, the wait for the NDIS can seem near endless, and there is a pressing need for accommodation issues to be addressed before the roll-out occurs here in around two years time. Is there something the NDIS can offer to make the wait easier?
Depending on the support plan, some participants will be able to access some funding for home modifications, some for specialised housing, and for a lucky few in private rentals, rent assistance will increase. However, it looks like these will be exceptions, not rules. By and large, the NDIS as it stands offers very little in terms of housing support, and faces the challenges of a market massively undersupplied in terms of accessible housing. There are trials of housing pilots in some areas, but the staggered release of the scheme means that most Australians struggling now won’t be able to access them. But it’s not all bad news. In some ways, Queensland is lucky to be late to the NDIS party, as we can see what has and hasn’t worked in trial sites across the country. The scheme has the potential to change and adapt under the influence of so many lobby groups and participants, so by the time it comes to Queensland, there may very well be more housing solutions in place. We are also seeing a big surge in local and grassroots movements, advocating for better housing and seeking ways to change the cultural landscape and housing market to be more accessible.
This is a significant time for people with disability in Queensland, as groups like the Disability Housing Futures Working group work hard to produce reports on the current and projected housing situations. Co-ops like the Independent Youth Housing Group, though not disability specific, are inclusive and working hard to provide discounted housing for those in need – they already have 11 properties on the northside of Brisbane and an internal savings plan, where contributions from the rent can go toward repairs, individual equipment or even travel. Organisations in different states, like Summer House in NSW, offer a fully accessible apartment complex with staff in attendance, and even private developers are building with more accessibility in mind than before. Perhaps a sign of good things to come?
As we wait on more reports, and try to plan for a rapidly changing future under the NDIS, grassroots organisations are fighting for change and working on building accessible, affordable housing solutions for people with disability. Perhaps as we wait, we should look to our neighbours, and encourage more shared projects on a community level, so that the NDIS can complement and work for us by the time it rolls out in Queensland.
 Disability Housing Futures Working Group final report due late 2016
The database we propose would involve collecting all current information (paper and digital) and programming it to include easily readable fields and capable of complex comparisons. It will also be used to add information about patients once they have left a facility and moving forward with their injury.
Our vision is the finalised ‘SpinalCARE’ database will be free to access for approved medical, research, and educational facilities.
Creating a national spinal cord injury registry could:
- Reduce the costs to the economy by providing insight to help facilitate effective quality improvement activities.
- Assist with collaborative research translation.
- Improve the quality of service planning, service delivery, care, and outcomes and for people with spinal cord injury.
- Support clinical trials already in place by providing ongoing data and therefore cut the costs of research.
- Provide data for future clinical trials and therefore reduce future funding costs.
The Australian Spinal Cord Injury Network are actively campaigning the Federal Government, and we have been collecting support from various units, institutions, organisations and education bodies –but we need your support!
Help build a fundamental foundation for the future of spinal cord injury treatment, research and clinical trials in Australia.
We encourage you to take action and get behind this project. Sign our petition. Share our petition on social media, and email. Send a letter or organize a meeting with your local MP.
Message from the Hon. Coralee O’Rourke MP, Minister for Disability Services, Minister for Seniors, and Minister Assisting the Premier on North Queensland
I hope you had a happy new year and some time out with your family and friends over the holiday season. 2016 is shaping up to be an exciting year for people with disability, their families and carers, as we move closer to the launch of the National Disability Insurance Scheme (NDIS) in Queensland.
I look forward to keeping you updated throughout the year with key information from government about the NDIS and other initiatives for people with disability.
North Queensland early launch
In September, the Premier and I announced that the NDIS would launch early in North Queensland. This means eligible young people with disability under 18 in Townsville and Charters Towers, and all eligible people with disability on Palm Island will be the first Queenslanders to start accessing the benefits of the NDIS in Queensland.
Local Area Coordinators (LACs) have been appointed and they’re working with participants to start their planning. I’ve had the opportunity to meet with some of the new LACs and they are very passionate and excited about their roles. I know many families are counting down to the NDIS launch, so it’s great news that as many as 600 people will be receiving their funded packages by 1 July this year.
In December I also presented at a forum of Townsville businesses about the economic opportunities provided by the NDIS early launch. It was great to see so many organisations enthusiastic about making the most of these opportunities. The NDIS will completely change the way people with disability access support and services, making them a powerful new group of consumers in a growing market. Already we’ve seen businesses delivering ballet schools specifically for children with disability, respite camping adventures and wheelchair snorkelling adventures. The possibilities are endless, and I can’t wait to see Townsville businesses work to meet this growing demand.
The early launch offers us a unique opportunity to test NDIS rollout processes in Queensland ahead of the full implementation. I congratulate the National Disability Insurance Agency (NDIA), departmental and sector staff who have worked so hard over the break and into the new year to ensure the launch is carefully managed and well supported.
CareCareers comes to Queensland
In addition to the benefits to people with disability, the NDIS is also expected to create up to 13,000 new jobs in Queensland’s disability sector when fully implemented. With this in mind, I’m pleased to let you know about CareCareers, a not-for-profit initiative aimed at attracting talented staff from all backgrounds to work in the community care and disability sectors. CareCareers is set to be rolled out across Queensland from February this year with an interactive jobs website www.carecareers.com.au and call centre providing career advice for workers in the sector.
CareCareers has been operating successfully in NSW for some time, and has so far attracted up to 15,000 new people to work in the industry. They will have a representative on the ground in Townsville shortly to provide support to employers and job-seekers interested in opportunities in the sector.
Alongside CareCareers is ‘Project Able’ – a program to be rolled out in schools and other education facilities to raise awareness among students of the growth and career opportunities in the disability and community sector.
Bilateral agreement status
I know many Queenslanders are waiting for further information about when, where and how the NDIS rollout will occur from 1 July. I understand how important it is to have certainty around the rollout, so that you can properly plan for the future.
I have been in regular contact with the Federal Government, and my Department has been working closely with their Commonwealth counterparts towards finalising the Bilateral Agreement, which sets out how the NDIS transition will occur.
The Queensland Government has been working tirelessly to finalise the Bilateral Agreement, which sets out how the NDIS transition will occur. Our main priority is to make sure the agreement provides the best deal possible for Queenslanders.
Fair access for Queensland to the DisabilityCare Australia Fund (DCAF) remains the critical point to be finalised. Queenslanders have been paying extra towards the DCAF through additional Medicare Levy payments since 2014, so it is only fair that we receive our share of funding to enable a smooth rollout.
Without access to this funding the majority of Queenslanders with disability will have to wait until the third and final year of the rollout to enter the NDIS. This means that thousands of people with disability will have to wait to experience the benefits of the NDIS, and it would put extreme pressure on the scheme in the final year.
It is important to remember that both the Commonwealth and Queensland governments remain committed to the implementation of the NDIS in Queensland. The Queensland Government will continue to work hard to ensure the NDIS is a success in Queensland.
Connect with the NDIA
Housing can be a major stress point for many people at the best of times, and trying to figure out what modifications or housing you’ll need can be a nightmare for many people with a spinal injury. On top of finding that dream home or making your place just perfect, there is accessibility to consider and modifications to plan as well.
If you’re still in the hospital and haven’t been discharged from rehabilitation yet, now is the perfect time to arrange your housing needs, as it will become more difficult once you’ve left. As the hospital can’t discharge you until you’re ready, take the time to make sure that the residence you’re returning to will be properly modified and liveable for you once you come home. The Home Assist program operates to help individuals plan out their modifications and get referrals to building companies, information services and subsidy schemes so that you won’t have to be out of pocket for modification expenses.
However, there has been a change in policy that will affect the way modifications work for people with disability who are purchasing a new home, rather than modifying their existing house. According to the new ruling, people with a disability who are buying a new residence that is not accessible will have to pay themselves for any modifications made to the building. Home Assist expects that people with a disability will purchase an already-modified home, and that it’s a clear choice to purchase one that is not accessible. 25% of people in our community are people with disabilities, yet we know that far less than 25% of available housing is not accessible, so this poses a problem. This ruling also doesn’t take into account the location of the individual, and their free choice in deciding where they would like to live.
Autonomy and choice are of the utmost importance for people with a disability and as we move toward a more inclusive future, these things must be prioritised in all aspects of life, especially housing. If you are concerned about the challenges of planning home modifications or purchasing an accessible home, we’re here to assist and provide as much information as we can. Everyone deserves a home, and for that home to be as comfortable and accessible as possible.
It may almost be Christmas but Spinal Home Help hasn’t slowed down one bit – we’re working hard as ever to fill the end of the year with as many programs and events for our clients, volunteers and peer mentors as we can.
Earlier this year, SHH Peer Mentors consolidated their expertise in counselling, interpersonal relationships and emotional intelligence by undertaking a one day life-coaching seminar from Inspyr. It was a success, with each of the attendees getting something important out of the day. SHH is dedicated to providing the best training for our mentors as is available and provided a second counselling and communications course over two days in November.
Working with the Australian College of Community Services, SHH Peer Mentors brushed up on their existing skill set and learned many new techniques for providing effective, friendly and sensitive support for our clients as they work with individuals transitioning from hospital to home. We even found some time during the session to meditate and reflect on what we’d learned!
On the social side of things, earlier this month several of our clients and mentors headed up to Mt Tamborine for some relaxation, wine tasting and a fantastic lunch at the Fortitude Brewery. Our mentors and clients spent the day out and about, eating great food, enjoying the company and the weather. We look forward to many such events in the future.
Watch this space for more news and updates.
The National Disability Insurance Scheme (NDIS) will start in Queensland from 1 July 2016 and will be fully implemented by 2019. The NDIS will transform the way people with disability access disability care and supports, and revolutionise the way disability supports are funded and delivered.
When the roll-out is completed in 2019, around 97,000 Queenslanders with significant or profound disability will have choice and control over the support they receive. The NDIS will also bring exciting opportunities for mainstream services, and the broader community.
In 2012, the Queensland Government committed $868 million to be delivered in instalments between 2013 and 2019 to help Queensland prepare for and meet the challenges from this tremendous change to the way in which disability supports are currently provided.
On 25 September 2015, the Commonwealth and Queensland Governments announced an early transition to the NDIS in Townsville, Charters Towers and Palm Island.
The Queensland early transition sites will deliver much-needed supports and services to children and young people under 18 years of age in Townsville and Charters Towers and all eligible people under the age of 65 in Palm Island.
The early transition sites cover the Local Government Areas of Townsville City, Charters Towers Regional Council and Palm Island Aboriginal Shire.
Around 1600 people are expected to be eligible for the NDIS in the early transition sites, with up to 600 of these people expected to receive their funded packages by 1 July 2016. The remaining 1000 eligible people from the early transition sites will receive their funded packages from July 2016.
The early transition is available to those who meet the NDIS access requirements, including people who do not currently receive supports from the Commonwealth or State governments.
Initially in Townsville and Charters Towers the NDIS will support children, young people, their families and carers through community engagement forums, building links with mainstream and community supports and, for some people, assistance with access and planning.
Existing Commonwealth and state-based services and supports will continue until eligible people start their plan with the NDIS.