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.

Jump? Sure... How High?

Gosh its been a while since I blogged last... I've been busy training for the circus you see. Laugh as you might, I think I may have qualified as an acrobat since we last met... And who has taught me such a skill? Well I'm learning this art courtesy of our very own health service providers, the HSE and the Department of Education and Science have thrown in a few lessons along the way. They are equal opportunity trainers, but if I'm honest, I think they favour our group at times as seem to focus on training us at every opportunity...

I first started jumping through hoops before I even met "The Professionals" at the HSE and the DOES, but the hoops I thought were difficult to navigate and jump through were only training hoops. A straight run and with a little effort you jumped right through. Inconvenient but not unsurpassable. Since those days though, the HSE and DOES have introduced me to a whole new level of hoops and obstacles to navigate on my path to get my children the services they need and are actually entitled to! When you have filled in the gazillionth form, and bought your own photocopier as have that many forms/reports/letters to post out what seems like on a weekly basis, and think you have things under control, another hoop appears...



Unfortunately, like circus lions, I have discovered that if I want to get to where I need to go, I need to play the game and when the Ringmaster says "jump" its better to ask "how high" than resist. As a wise woman once said, you catch more flies with honey than vinegar. She also told me that the "squeaky wheel is the one that gets oiled." When you are tired doing mental acrobatics, sometimes you need to step back, gather your energy along with your thoughts, and when you are ready, take another bash at it.

Whether is a refused DCA application and appeal, a request for reports, applying for Home Tuition, an SNA review or the fight for Speech and Language Therapy, or Occupational Therapy, you need to find the best way to approach the hoop to make it through. Sometimes you will need the support of others to help you along and give you a "boost up" when you feel you have no energy left to jump. Others who have navigated the course can be valuable allies as even thought the route may change from time to time, they will have information and advice how to handle your particular situation.

I think what I'm trying to say is "don't give up". The reason these hoops and obstacles are placed in our way is, in my opinion, to make it more difficult for parents in the hope that some will not pursue it further. A shameful way for the Government to save money at the expense of our children. What they don't bank on is us all coming together and in a show of strength helping each other navigate. When your child is diagnosed, you are not given information on what your entitlements are or what you can apply for. If you know any parent in this situation, please tell them, show them and guide them towards the information they need.




Right I'm off to sew some ostrich plumes to a leotard and post my CV to Duffys Circus...