Submission No 47
INQUIRY INTO IMPLEMENTATION OF THE NATIONAL DISABILITY INSURANCE SCHEME AND THE PROVISION OF DISABILITY SERVICES IN NEW SOUTH WALES
Name: Mrs Janene Theol Date Received: 10 July 2018
Janene Theol
10th July, 2018
Implementation of the National Disability Insurance Scheme and the provision of Disability Services in New South Wales
I was diagnosed with Multiple sclerosis in 1998, am a mother of two twenty something and have a very supportive husband and I have found the NDIS a revelation which has changed my life. My MS is Relapsing and Remitting which means that there are days when I feel well and others that I feel unwell, which means there are days when I just can’t get out of bed. My body is affected by humidity so living in Sydney has become impossible for me and my husband and I moved to the Blue Mountains, which has low humidity, this has meant that I now have a life and am able to do some gardening and bush walking.
With my MS I have found that I need to keep my body moving or the spasticity gets worse, so I must push myself to get out of bed to walk in the beautiful bushland. With the NDIS I have been given access to a Physio, who I now see for an hour each week and has built strength and assisted in my movement, without the NDIS I could not access this service which has been so beneficial.
My MS has also affected my bowel and urinary tract and have times when I am incontinent in one or the other so I now where an adult nappy every day. The cost of this is prohibitive for me on a Disability Pension, now with the NDIS I just make a phone call and a box of nappies are delivered to my home, so easy.
Because my strength and wellbeing fluctuate I found it challenging to keep my house clean and the NDIS provides me with a cleaner for two hours a week which means my bathroom and floors are clean and beautiful.
The house that my husband and I rent is on a large steep block and I have found it more and more challenging to tend the garden so now the NDIS provides me with a gardener to do the heavy work for one hour a month, which has really helped. I still potter, weeding and watering but the trimming and cutting of the bigger bushes and trees are done by the gardener.
I would like to suggest that to help keep people like me, who still have most of their mind, but are physically disabled the opportunity to do some extra study of interest to them. This would help keep their mind active and assist with their social interactions. The NDIS should be extended to assist with this type of activity.
The other possibility that needs to be considered is rent assistance. We rent a two-bedroom house in Mount Victoria for $1,000/week, I get under $800 a fortnight in my pension and my husband’s wage is about $1,500 a week so it is a struggle when we must pay for the necessities of life. Rent assistance would be of great assistance.
These are just my thoughts on what is good and what isn’t good with the NDIS for me.
I have friends who are disabled, and they have a different experience. One has been refused because Addison’s Disease is not recognised, and she is far worse off physically than myself. Another friend has a 17-year-old son who is servery disabled and the parents would like to set him up in a care home but the NDIS suggested that the son needs to ask for it, he has no for of communications apart from a small number of hand signals or screams … what are they to do, they cannot fund it themselves?