Abolutely filthy

I posted below about getting commonwealth funding to get care for Geoffrey and Peter whilst my husband is in hospital having his ankle operated on. Well the agency that we use for respite got that funding. I rang the agency thinking that everything had been arranged as they said it would be on Monday – the day of Greg’s operation only to find out that nothing had been done.

I spoke to a bloke who was filling in for our regular case manager only to be told that no notes had been left for him regarding any follow up. He stated that he had tried to ring us but with no success. I promptly replied that no message had been left on our land line nor our mobiles.  He said that he would work on getting someone to care for Geoffrey and Peter as I went to work. He then stated that the regular case worker had a car accident, so I don’t think it is fair to EXPECT her to leave notes for him to inform him on what needed to be followed up on. As one of the coordinators, I would have expected him to have the skills and the ability to link with her families and discuss what was happening?  What happened to initiative and independant practice?  Am I expecting too much?

To say the least I was NOT very happy. He then had the audacity to ask what Fragile X was. I replied with “Don’t you know about Fragile X?” and he replied no! My patience had then almost run out and said in a very curt and terse response that Fragile X was the most common form of inherited intellectual impairment and it’s incidence was second only to down syndrome. I then said “I think you need some education, don’t you think?” I think he got the message that I was NOT very happy.

It took all my restraint to not flip my lid. How could a coordinator of a respite service providing care to the intellectually disabled and their families not know about Fragile X?” I think that is very substandard and below expected knowledge for someone who is a coordinator of the service. My thinking lends itself towards how can they be expected to match the carers to the intellectually impaired clients without having a basic understanding about the disorder and it’s idiosyncrasies. I think this is very sub-standard.

What has evolved over the last two days is that the agency failed me the first day because they could not find anyone to care for Peter and Geoffrey. I had to ask my step-son’s wife to pick them up. I don’t like asking for help with them, because I have lived through a life where people have expressed high anxiety about the care of Geoffrey despite him being extremely compliant and good in care. It is very few times that he has defied instructions given to him by others.

Today, they managed to get Peter and Geoffrey’s regular carer. When I got home I asked him what he thought about this coordinator. He replied that he was alright. I then asked how much education did he get on different disorders and he replied not enough. I then told him my story and how livid I was with lack of knowledge and also not being able to provide the service they said that they could provide and also got funding for. Peter and Geoffrey’s regular carer then said, “but we wouldn’t look after too many people with Fragile X” I then told him that the DNA marker had only been identified since 1991 and that there would be a number of older clients who may have Fragile X but may not have been diagnosed because the test previous to the DNA test contained flaws and did not always provide a comprehensive response to the diagnosis of Fragile X or the extent of it within a person. It was obvious as well, that neither of them have any idea about the expression of Fragile X, in both behaviour or phenotype. I said that I would be prepared to provide some education about Fragile X and it’s associated disorders. I told our regular carer that maybe he could raise it in their next staff meeting to give me time to cool down and get a more reasoned grip on the situation.

Thankfully I have over 40 hours in ADO time so I was able to negotiate another ADO for tomorrow. We are expecting Greg to be discharged tomorrow which will then relieve the necessity of care for Geoffrey and Peter as I go to work. Normally because Greg is a special ed teacher, he takes the boys with him to work and they catch their taxi to their program. At the end of the day, Greg finishes 15-30 minutes earlier than the boys so is able to go down the street in time to pick them up and take them home.

Far out Brussel sprout – will this ever end!!! It seems that all I continue to do is argue for the boys rights and what they are entitled to. It doesn’t seem fair.



We have a little crisis this week. My husband Greg is going into hospital on June 23 to have an operation on his ankle. To manage care for our boys, he takes them to school with him and the taxi picks them up at 8.45 to attend the training program that they are enrolled in. At the end of the day, because Greg is a school teacher, he finishes work a few minutes before they do, so he can drive down the road and pick them up to bring them home.

I work as a nurse in a community health centre. My hours are not so flexible and I leave before they need to go to their training program and am home close to 6pm each day. This means whilst Greg is in hospital, I am in a dilemma.

I rang the respite agency that we go through to negotiate extra care for the boys so that I can still go to work the days that Greg will be in hospital. Generally we are allocated 4 hours per fortnight for respite which we use on Friday nights every second week. The agency applied for Commonwealth Carer Respite and thankfully we were approved for the extra funding to pick the boys up for two days and bring them home after they finish their day. We have arranged that Greg’s teacher aides that he works with, will supervise the boys in Greg’s classroom prior to the taxi picking them up for their program.

It’s a lot of mucking around – numerous phone calls, speaking clearly to people explaining what our needs are and assuring them that this is only short term whilst Greg remains in hospital. I needed to make the phone calls from work and give them my work number for them to contact me. This is something I do not normally do as I like to keep my work and personal life separate. Usually I give my mobile number as a first contact, but I can not be guaranteed to answer the phone especially if I am with clients.

I am really pleased that we have care now. It takes a load off my back trying to balance work, the boys, and also visiting Greg each day as he remains in hospital.

Thank goodness for that.