Tuesday, May 31, 2011

From both sides of the fence... I'm Angry

I woke up this morning feeling like two of the Seven Dwarfs... a little bit Dopey due to the confusion as to why our Government has let the most vulnerable in our society down, but more Angry (I'm using creative licence here... Angry/Grumpy right?) at the state of affairs that was highlighted in Primetime Investigates last night. For those who haven't seen the program, watch it here and be prepared to cry and get angry too. If there was a dwarf called "Lucky" I would consider myself that one too.

I'm one of the lucky ones, my children don't have the extensive care needs that others I have met and know over the last few years have. I'm lucky that my little girl has progressed and will go to mainstream this September. I'm lucky that I have good friends and family that have supported me along this journey. I feel sick to the stomach that I've bemoaned my lot when seeing what others have to deal with on a daily basis due to the chronic neglect from our powers that be. I'm lucky and very thankful that I've been equipped and able to provide my child with services that were never forthcoming. Others are not so fortunate.

I recently contacted my Autism Liaison Nurse for help. I haven't pushed for assistance up to now as was fobbed off with the "cutbacks" line but being a single parent and having to go into hospital for a week for a hysterectomy, I felt it wasn't a want help situation but a need help one. The line I was given was that to give me help, others that need it more would suffer as they'd have their hours cut as there was nothing in the budget left. I was angry and wrote a letter to the ALN and her superiors asking for a response in writing. That was over two weeks ago and guess what... no response. After watching the program last night, it made me cry that its people like this that they are suggesting taking hours from.

I provide home support myself as work for the HSE (Health Service Executive) and although I've given them ample notice of the three months I need to take off after the operation, they will not be replacing me while I'm off recovering, the family I work with will lose the hours I provide until I return in September. This disgusts, worries and upsets me and has left me feeling that I personally have let them down. I know many carers and health care attendants that harbour this feeling of frustration and upset at letting their clients down when in fact its the pen pushers and management of our health services that should be hanging their heads in shame, not us. Its impossible not to feel responsible though when you see the family you work with run themselves ragged caring 24 hours a day for their children, with minimal support that they have had to beg and fight for. Who is going to care for the carer when they have physically and emotionally burnt out?

Guidelines were passed down recently to all HCAs working with children denoting the new regulations... For years we have not been allowed to drive the children we work with, we are not allowed to feed them if they're peg fed (highly unworkable as if the parent is in another county at hospital with another of the children what do you do? Let them starve to make sure the HSE isn't legally responsible? eh no...) The newest regulation is that any HCA working with a minor cannot be left alone with them and its up to the parent to ensure that another adult is present at all times with the carer. It defeats the purpose of respite and support if the parent has to remain while you work. If there was a family member or other adult that could be present, there wouldn't be the need for the HCA there... Is this what the pen pushers are aiming for? If there is a non HSE adult available to be there the next question for the parent will by why do they need support if they have someone who can come in? Can hear the axe swinging as I type this...

Between cutbacks in community care and our health service, and caps on resource hours and Special Needs Assistants (SNA) in schools, what future are our children facing. Can our new Government do the math and add up what its going to cost down the line by hacking away at the supports and services now? I really hope so.


Momx3 said...

Shocking on so many levels! This country is a disgrace & it doesn't look like its going to improve anytime soon.
Last nights programme hit home with so many of us "special moms". I personally feel quite guilty that I get some home help when there are more needy families out there, but, I also feel that to hand those hours back to the HSE would be pointless. They will not give them to another family (or so I've been told). I have had 4 different homehelps through my door & each of them has told me that they are instructed to do "basic household chores, nothing more". I can see there point of view on this but what kind of message does it give an employee starting as a homehelp. When my hours were allocated I was told that as they didnt have anyone trained to work with my children they would provide someone to work in the house so I would be free to work with the kids or take them on their long trips (50 miles) to their therapies. If I am to do this then who is "watching" the other kids. My kids are different ages & DO NOT work together. Do they suggest I get 3 homehelps in? The whole thing is wrong. I would gladly give the hours back to a family like those we saw on TV last night but what would they gain? Homehelps that have worked here are not trained in anything in particular, they cannot lift people, they cannot change soiled clothes or bed clothes, they cannot feed people & now they cannot be left unassisted. How is this a benificial service then?
I really feel that the whole system needs overhauling. Will it happen? Not in our lifetime. All these gits seem to know at the moment is Cut Cut Cut. Not good enough.....

Momx3 said...

Great blog BTW & sorry for ranting! I'm just really cross with our whole system at the moment. I am very greatful that my circumstances are not as bad as the families featured last night. I would just like to get the people responsible for this mess & bangs their heads together.
Best of luck with your op next week hunny. I know its hard but try not to feel guilty about needing the help. You have never asked for anything from them & the very fact that they even tried that disgusting excuse on you says so much about them.
I hope the family you work for get someone in the interim too. I cant get my head araound the fact that they'd even suggest they couldn't replace you while you are recovering.
Lots of love, xxx

Petunia said...

Thanks for the comments Momx3. Thats awful that they fobbed you off with someone to clean the house instead of work with the children. Currently there are three schemes running, Home Help where someone comes in and cleans and does "light housework", Home Care where the person who comes in takes care needs of the service user, ie personal hygiene, feeding, dressing etc, and Home Support where the responsibility of the person is to provide respite for the family, not just for the individual client. This is all going to change in 2012 where all "help" will be classified as Home Care Attendants and will be responsible for all aspects of care, cleaning and respite etc. The HSE has been sending current employees on training so that they are qualified to provide for the care needs side of their job. This in theory is great. HOWEVER... from talking to many people who have done the home help side of the job, they are refusing to deal directly with the client in the job. Call me cynical but I personally think this is because they can work fast and get in and out in half the hours they are assigned. I've heard workers stick to the letter of the "LIGHT housework" rule and refuse to do anything other than a quick runaround with a vacuum cleaner and a flash of a dusting. How this helps the client is beyond me?!? Parents should be able to specify what sort of help will benefit them most. For some yes cleaning might be what they want, but for most, its the chance to have a few hours off knowing that the person who's there to mind their children is not just there for the pay cheque and their kids needs will be met both emotionally and physically

Looking for Blue Sky said...

Don't ever feel guilty about asking for help, Petunia. The 'person' who told you that any help you got would be depriving someone else is so wrong, just like the TV programme last night which suggested that more money for carers meant less for overseas aid. No mention of the billions being poured into the banks. You need and deserve help and I really really hope the HSE sees sense and provides it x

Lisamaree said...

That's just typical HSE default behaviour - bully the vulnerable rather than stand up and change work practices to get more frontline services to the people who need them. Twitter was full of SIPTU members that night who were on the offensive at the merest suggestion that work practices change and money be distributed more efficiently. I had several clashes with pig headed reps who having seen the victims of their obstruction- were still intent on maintaing the status quo - and getting more money to waste.
O'Reilly has never been in a better position to take the funding out of the HSE pot and offer it directly to non-profit agencies prepared to provide a adapted to the needs of clients.
Instead of all this arse covering - they could hire irish nurses to care for seriously disabled in their homes with family able to take a break. They could hire ABA tutors to offer respite to the newly diagnosed parents - SNAs experienced in care needs - on rosters to suit the families and staff and all for what it probably costs to keep one seat shiner in the top jobs. Better still, get the seat shiners job description changed and they can be re-deployed as home support on their 200k a year. At least they would be useful!
This story needs to be told xx

NanP said...

Since I am too angry for words, all I can say is "Grrrrrrrr"

PS: good post, putting it in just the right light.

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