My Life Before and After NDIS

On May 3,2013. I had a seizure, which left me with a lifelong brain injury and many other health challenges. Prior to that, I was a working single mum and carer for my children who had their own health challenges. On that day, my life changed forever, I went from being a carer to someone needing care. I spent the next five years trying to navigate life while strug- gling to get through each day.

During this time, I felt lonely, lost and unable to do the basic things I used to do. Family and friends did what they could but, they had their own commitments and lives to live. I spent a lot of time alone. Each task I did took energy and planning. My days became:

• Get out of bed
• Have a shower
• Get dressed
• Make coffee
• Have something to eat

My life was reduced to the simplest of things. While I was grateful to be alive and grateful for my friends and family, I felt confronted by a new reality: I was dependent on the help of others. I found myself getting lost in conversations. I could no longer follow basic recipes. I could not clean my house or even go for a walk. I did not know what my future would hold. I even wondered what the point was in living if all I could do was sit and watch the same tv shows over and over while not being able to follow the storyline.

I missed out on attending many family functions, seeing friends or doing any of the things I used to. I was unable to visit my Nan and say goodbye to her before she died. I had no-one to take me. Public transport wasn’t an option and I was unable to drive. All I was able to do was phone her. She was such a big part of my life and I was unable to be there in final days.

My son became my carer. This put a lot of pressure on him and the rest of my family. My life was reduced to attending appointments (with someone else taking me) and just surviv- ing each day. I had little social contact. I was grateful to be alive but, I wanted more. I want- ed to enjoy my life. I even forgot that a dear friend of mine had died. I felt like I had no pur- posse.

When my kids grew up, living their adult lives, I was left to fend for myself. With the help of a dear friend, I applied for NDIS. After several failed attempts, I was ac- cepted and given the support I so desperately needed. NDIS enabled me to have workers come to support and help me with my everyday needs, things that people without a disability take for granted. With the help of my support workers, my life has improved sig- nificantly, whilst my health challenges have increased.

My risk of falls has increased and, as a result, I’ve had several fractures, one requiring surgery. I needed assistance with showering, dressing and basic self care. Without the help of my support workers, I don’t know how I would have got through these times. I don’t know how I would manage my life now.

• My memory and auditory processing have also become progressively worse, leading me to need support to remember and document the information my medical team tell me. Without their assistance, I forget much of what I need to do. I also need help to complete even simple tasks such as cooking or making and attending appointments.

• My pain levels have increased and my stamina has reduced leading me to need to rest frequently. Fatigue comes on quickly, often before I have completed a task.

• My mental health has also been significantly affected by my health challenges. My support workers have been and continue to be some of the most encouraging, caring and inspiring people in my life. They inspire me to keep going and have helped me to set and achieve goals for myself. In achieving my goals I have also been able to help and inspire others.

• My support workers take me to my rehab, therapy and medical appointments. They also take me to visit friends and family, enabling me to keep in contact with people who I otherwise wouldn’t see.

• If my social and community supports were cut, I would not see my friends, I would not be able to continue to attend therapy sessions. My social and community supports have helped me immensely to increase my memory, my ability to process what people are saying, my stamina, my cognitive capacity and my self confidence.

When I first came out of hospital after my brain surgery, I asked my neurosurgeon how I could help myself to improve my brain capacity. His advice was simple. He said: “Use it or lose it.” With the assistance of my support workers, I am doing this, improving my memory, cognitive function and capacity. I am achieving more than I thought I would be able to. In this way they and NDIS have made a huge and positive difference in my life.

• Without the capacity support I have, both my physical and mental health would decline significantly. I would need to call on my family and friends far more, knowing that they would not always be available to help me. I would find it difficult, sometimes impossible, to attend medical appointments. If I was able to attend appointments, I would forget what the doctor or medical professional had said. I would be unable to do things like hydrotherapy which helps my body to continue to function, improves my balance and strength, aids my ability to walk and increases my stamina. I would not be able to survive at home on my own. I would spend a lot of time sitting by myself in my house, with both my physical and mental health being negatively affected.

• Without the social and community supports I have, I would have very little contact with people outside of my medical team. I would have limited, if any, access to maintaining the skills I have or learning new skills both of which help my brain to remain functional while also improving my mental health and my ability to do things for myself. With the social and community supports I have, I am able to engage with others in my local community, do what I love doing.

The NDIS has had a positive impact on my life by helping me remain as independent as possible, connected to my family, my community & supported in my own home. I am currently able to attend family functions and keep in contact with my friends because of the support I receive. Despite the many challenges I have, I enjoy my life. I have learned to live with my disabilities, pace myself and have fun in my life. Since receiving the support that I have, I feel like I matter. I DO NOT want to lose this feeling. I DO NOT want to end up in a situation where, if my supports are reduced and my health declines, I am left ISOLATED, ALONE and FORGOTTEN.

I have little choice and control over my disabilities but, I am grateful for the choice and control I have over the supports I receive. I DO NOT want to lose this. I do not want the minister for NDIS or the government to reduce the choice and control I have over who can and can’t support me.

Being disabled is challenging, bringing uncertainty and fear. With the support I receive through NDIS, I am able to live my best possible life. I urge you to consider the impact that the proposed changes to NDIS would have on the lives of people with disabilities and our families. We matter.