Individual Submission – Christopher Morgan

I am a carer

Christopher Morgan

I was an active Carer for the last 15 years – caring for my youngest son DOB 8/8/87. His mother deceased in 2001 from the genetic condition she had – undiagnosed until her autopsy – six weeks after Darren (the son) was also diagnosed. It is a maternal Inheritance so our other 2 sons aged 34 & 38 also suffer some serious symptoms – they do not yet require intensive care support.

I have used Services offered by the “Carer Support” Agency (Federal Funded) in various capacities over the 15 years. Early on the support was required intermittently. Family and friends were available in the early years & I managed reasonably well. By 2006 (4 years on) support was from my two (sisters) siblings only, that to dried up by 2009; they also have busy lives to lead – both were either in near full time work or following their husband with overseas posting. Since then all support has been from Service Providers funded in part by government.
Disability SA,provided Personal Care for Darren (1 hour each for 3 services a week. For me 1 hour per week of Domestic cleaning.
Minda Inc (SA),These provided short (4 nights every 6 weeks arranged 3 months in advance
Class Inc SA. provided long term respite (4- 5 week block) booked 12 months in advance for Darren.
Bedford Group- provide a work placement for Darren 18 hours a week.

My DOB is September 1948 – so I have been become tired and worn out – particularly in the last 2 years. “Carer Support” has been useful for peer interaction and social gathering. It also provides a forum to highlight and train on self care strategies – all of which have allowed me to keep on Caring.
Despite these supports I have just recently found that I can no longer continue caring role. In November 2014 I sought to place Darren on an accommodation list with Disability SA – which they did.
By late 2015 I was actively seeking movement on the accommodation request.
My health failed in September 2015, that coupled with medical prognosis for both Darren & I indicated that full time (24 Hour) care was required for Darren.
This was allocated and taken up in March 2016. My health has improved, Darren is receiving better social interaction and is relishing the chance to live as a grown up with his own place; (he shares with 2 other men on Campus at Minda Inc SA).

My observations on the intergrated support process (Carer support).
Page 19
Councelling as a process may not solve the problem; Carers need hands on support or time out to allow them to continue in the role. We don’t have time to comtemplate solutions from the thick of the caring requirements.
Page 22
We have no time available to do forward planning – so we move to crisis.
Page 21, 23,24
Carer Support Functions are a good base but need Commonwealth $ to make it work – They should be the “intake function” – & so provide the master record database of needs for the Carer as well as understand the existing supports needed by the recipient via NDIA funding. They should be the repository of knowledge over & above ‘Carer Gateway” internet site, many carers would appreciate help on where to look on line or seek further detail from a real expert – Carer support should provide that coordinating role.
It is given that all Carers have different workloads – some manage care & work. people in my situation as described above dealing with a lifelong & profound disability need the extra support of true Respite and ultimately as we age- residential Care for our Caree.
NOTE I looked briefly at ‘in home care’ – not viable I would still be under stress as service givers came and went at all hours 7 day 24 hours. This is not viable for elderly carers or those managing Profound Disability.

Page 32
Respite is separation overnight from the Caree! (Centrelink count it as 24 hours, anything less is not Respite. Its the chance to do other family chores or sit and take a breath or time out. Accordingly Planned Respite for minimum 24 hour blocks is mandatory for the health of the Carer and those also in the household (who may be offering informal care anyway).
Page 37
Carers having to keep books on direct $ payments for audit trail is another task with no time to do it.
Page 38
Carers don’t want coaching on how to cope they want real help – hands & feet to do tasks ! Coaching is so called ‘training time’ – better used as time out to keep our sanity.
Page 40
Respite planned 3 months in advance works well – you know it is coming & how much longer you need to perform before there is a break. It allows Carers to set the breaks to the limit of Centrelink 63 day entitlement.
I have also been able to set 12 month in advance dates to allow me to disappear away from home for 4 weeks at a time annually.

Emergency Respite must be continue to be available with capacity to meet the degree of demand by its very nature

Page 41
Respite remains a Primary Support for those dealing with life long conditions – many will deteriorate into ultimately terminal conditions.

Councelling may be offered on line by chat or however. It will still function best face to face – we are social creatures and need to talk to real people not to a keyboard and screen. The option must be offered.

If sufficient Respite is not provided expect that Carers will ultimately fall into burnout with the psychological and physical issues that will result. In that case there is no option but to remove the Caree to institutional care as well as the cost of returning the Carer to health.
Failure to act decisively (Medicos, psychologists, Councellors or any other crisis Support functons) will lead to a breakdown in that Caring Function Unit.

Both Carer and Caree may be in imminent danger if suitable respite and / or practical intervention  and Support is not immediately made available. An urgent Consultation with the Carers usual Medical Practitioner  must be the first point of contact when the situation appears to be out of control. This should then reflect in immediate and effective intervention so avoiding the situation from becoming dangerous.

Caring is fulfilling but for many people at some point it finally becomes a point of resentment as burnout looms for the Carer. We need a structure and the $ to support the Carer for as long as they are able to perform the task – & when they can’t society must provide for the Caree instead. To do less marks us as a society that has lost its humanity – and compassion for human life.

I hold a soft copy of this submission for my reference