Individual Submission – Anita Geach-Bennell

I am a carer

Anita Geach-Bennell

individual

I am a primary carer.
I am currently an active aging primary carer of twin high support needs daughters who are 38 years old…they require 24/24 care both hands on and guidance with every day living etc and their medical issues , which occur during the night as well. I often have to provide medical assistance as well as they suffer complex seizure issues. My husband also assist with what he can as he has a terminal medical condition..
I feel that the time that carers have been given to become aware of this new integrated support service proposal has again only allowed a short time frame to try and get the hang of the issues at hand…it would have been of benefit if the info had been spread more widely… I only recently became aware of it and I can tell you that I am not happy that important decisions are made by others and not us grass root carers truly being considered….
I have cared for my girls as they have the right to engage in community activity, be actively involved with life skills…recreation…doing meaningful tasks …enjoying their quality of life as best they can with the time and assistance and resources so that they can have a safe, happy and productive life.(this is usually dollars and the 24 hour care that we the primary carers provide at no financial cost to the Govt….to replace us would cost a fortune…probably about $200 thousand dollars per year..
now that I am older I find the whole issue burdensome and it has a negative effect on my/our physical , emotional health, financially and socially. The chronic stress as a result of unreliable paid service providers is fragmented and unreal…often the support person does not show up…or the person can not be replace….so this is what we are supposed to deal with all the time…respite is just a word down here in Gippsland where we reside…in home respite or PAG/HACC is a joke…no proper qualified staff who can safely work with my girls…as they require attention and have medical, mobility issues an intellectual issues…
Just to say, we have been pro active and planned and have built a house to suit the girls and includes 2 rooms for other PWD …but we can not get Govt. funding to replace us the primary carers for 24 hours. We had hoped to train and educate support workers for the personal care and the needs of the girls and how to go about them safely and the night time requirements…so this house now stands unused for PWD…what a waste…
I have not the energy to reply to all the issues addressed but I can say that as there is no assessment of the carer within the NDIS process…I state that this must change as we need to be fit and healthy to continue with our role until we can join in with the NDIS rollout in 2019….that seems along way I can tell you …caring is fulfilling but at some point it finally becomes a resentment and chronic health issue for us as we are on active night care as well…I was a professional in the nursing field but recently had to give that away because of burnout….The Govt. needs to support the primary carer…not by words as is the Carers Bill…we need reliable hands on support…
Where are the Govt. funded regional advocacy groups for families of high support needs PWD who also have communication issues and need the family to advocate for them…there are none…every other person that can speak or have their issues conveyed have Govt. funded advocate. We need to start from the grassroots…many of these folks have walked the walk so understand what carers are expressing. The Regional carers network plan should be funded to support us carers… Gippsland Carers Association Inc.. are already paying a carer mentor to support families with addressing their concerns and proving information, education, advocacy and face to face support if needed and support groups Many families have already benefited from this support brought about by carers responding to requests for support and self funded with the support of Philanthropy. This position can only continue if they can secure further funding to carry on.
Positive outcomes must be achieved to have all primary carers included in decision making with advocacy and respite, employment, transport and all life activities that are used by families…we are not all able to fit into one size fits all as we are individuals.. and other issues that are of concern to families.

The Carer Gateway computer technology I find is not for me…I do not have the energy to go looking there..my brain is already exhausted.This is why the carer mentor co ordinator with the Gippsland Carers Association Inc.at the moment can help me deal with some of my concerns..
Many thanks for taking time to read this…I hope I have been able to put my point across..
Anita Geach-Bennel and Ken Bennell