We'd like to introduce you to the Smith Family, Andrew, Claire, Joshua and their special girl, Melinda who were introduced to us by Carers QLD.
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Melinda is 19, and has significant disabilities (autism and hypocerebral palsy): she has the skill-set of a girl aged between 2-3. The Australian Government assesses her at the highest official rating of need. For perspective, Melinda is in her final year at Special School on the Gold Coast and is one of the most challenging students within this community.
Melinda has always been embraced as a welcome member of our family, and mostly, we have soldiered on without a fuss – that’s what parents do. Our family has also had our fair share of normal curve balls in broken bones, car accidents, financial pressures, job changes, sickness, caring for ageing parents, grief and loss like every other family. Plus my husband’s disease since his teenage years has resulted in numerous major (and costly) surgeries, with over 1000 stitches, 100’s of staples and a scarred body that is akin to a snakes and ladders board. However our requests for greater support from Disability Services (DS) since 2007 (when both my husband and I each had a breakdown), and intently since July 2014, have mostly fallen upon deaf ears. Melinda’s care has taken its toll upon my family and I – we are now broken: exhausted and despairing.
In July 2014, I realised that my family’s ability to continue to care for Melinda was failing. I requested 6 hours of respite support for one Saturday each month – so we might be able to do some normal family things (visit friends, attend a wedding, go to the beach, etc.). DS denied the request and responded that if your husband’s health was to decline, and you required additional funding at that point in time, [the application] could be re-explored. I.e. my husband had to need further surgery before we could have a weekend afternoon off each month. Note that those who made the decision to our request had never even met any member of my family! ome with similar aged females and receive sufficient carer support so that she participates in life and does more than stay in her home watching television all day.
Since Andrew and Claire's public out cry for help, Melinda will soon be commencing a trial to move into a group home. Over the course of up to three months, Melinda will spend part of each week at her family home, and part of each week at the new group home.
By voting and helping secure $10,000 from The Grace Group, you have provided:
Despairing, my husband and I reluctantly considered relinquishment of Melinda in November 2014, as the only way to care for the remainder of our failing family. With DOCS and DS, we then proposed a well-planned transition over 12 months to move Melinda into supported accommodation on the Gold Coast. Over many months, we met with DS and DOCS officials, filled out forms and complied with every request. As we entrust them with our story and our desperation, DS tell us to our face that our family is abnormal. They involve the police, and threaten to take Melinda from our care with no warning, and place her into state care that may be completely unsafe and inappropriate. Needless to say, we did not appreciate them adding more stress to our home. The Tribunal dismissed DS’s claim that we are incapable parents, and DS later withdraws its application to have Melinda’s guardians changed from us to the State. No apology is forthcoming from DS.
We have received verbal promises of financial support made by DS that was witnessed by 5 others. But when it comes to receiving confirmation in writing, intriguingly, I have no recollection of making that commitment .... was the official response. DS have often hidden behind the phrase, there’s no capacity to mean that there is no funding to achieve an assessed goal. But since Melinda has been on the DS radar as critical since 2007, we think that they’ve had enough time to save their budgetary pocket money to provide for her. Furthermore, not unlike aged care, whenever a supported DS client passes away, their funding can become available to another DS client. Perhaps on the Gold Coast there is longevity among the disabled?
It’s now October 2015 – 11 months on and the political games continue. Until very recently, it seemed no one within DS had actually begun to source appropriate accommodation for Melinda. This is even after DS has advised us that Melinda is currently the highest regional priority. Without the funding promise in writing, Melinda’s application for supported accommodation remains ineligible.
Despite being ineligible, suddenly, last month, a small home with tenants nearly 3 times Melinda’s age becomes available. We are assured that this is one of only 2 places available on the entire Gold Coast. Alas, the particular needs of the tenants are not compatible with Melinda’s, and the other home placement is less suitable.
Two weeks later we discover from a separate source that a young lady was recently placed in a Group Home only 10 minutes from where we live, and Melinda’s name was not even put forward. As the highest regional priority, we were shocked. We were also informed that there are over 35 Group Homes on the Gold Coast run by one particular service provider, plus more homes run by other providers. Surely, one female has exited one of these homes for anynumber of reasons in the last 12 months?
Please, we don’t know what else to do?! We have tried to work collaboratively and with integrity alongside DS for so long. We need assurances that Melinda’s situation will be addressed immediately, for the sake of our whole family. Please help me to remind the Minister for Disabilities and the Regional Director for SE QLD, of discussions to support Melinda appropriately and swiftly. That means, that she receives the Individualised funding that they have already assessed her as needing, to allow her to live in a Group Home with similar aged females and receive sufficient carer support so that she participates in life and does more than stay in her home watching television all day.
Through Claire's Eye's
How You've Helped
90 hours of Respite Care
120 hours of Recreation and Sport
2920 Continence Aides
Trip to IKEA