awnyah todaysay: Ireland, water charges, being sick and being in th...

awnyah todaysay: Ireland, water charges, being sick and being in th...: a few days after christmas, i can squarely say it wasnt much of a festive season for my twin sister and myself. we are in Ireland. the cou...

Ireland, water charges, being sick and being in the EU - disability opinion

a few days after christmas, i can squarely say it wasnt much of a festive season for my twin sister and myself.
we are in Ireland.
the country is in crisis with an odd agenda of a small country being completely taken over by the powerful in Europe.
i wish to see us OUT of the EU and go the way of the scandinavian countries and also Iceland.

this is a view held by many and i believe the Irish are rising against what we now see is a tyranny on our small state.
we are but small and yet we think as if we are mighty, we are not.  we will remain small by virtue of our position as a small island on the perifery of europe.
we have great talent, good ideas and fanstastic work force but we do not seem to flourish when on the land, we seem to do that once forced away from all we had known.
every single generation now has known emigration on a large scale.
ireland continues to have little to offer its young and educated.
this is the problem.

but on a personal level and it has to be personal for i am not in the main a polictical analysist, i see with my eyes, i feel with my soul and i endure it too as a disabled woman getting older, and doing so alone with my twin doing the same.
we are 'degenerating' aged 62yrs of age.
there are no supports for us.

the family in ireland as society is breaking down is also scattered, fractured and lost.
to us.
but many families now face the same.
many families do not support their own in time of need and some do not because they cannot afford to, cannot spare the emotional/psychological space because they had grown up in a dynamic of individualism and do not want to hear such words as 'sickness,' disability nor policies on disability, equality and disability and fairness nor do they want to hear that there is no effective public health service here.

we are told, if we go to a family gathering, do not talk on health matters.
i say inside 'well its still there, even if we do not talk about it, we still  need help, still sick and never will we be getting better.'

the way ireland is going makes the vast majority of its people very frightened indeed of the future.
we have a large aging population, no health services, and now they speak of cutting the pensions, but if they do that i may as well just die.
would it be better to put me up against a wall and shoot me?
Why do they say they want to cut the state pension when our own government ministers and president earn more then the leaders of vast states, even our leader earns touching what President Obama does, we have a country of five million and he is on THAT wage and with all its pomp and glory too!
why not start where the money is?
why are they decimating the old, the vulnerable, the sick and those alone without support.
why do they do this and they have always done this.
france put up frames on benches to stop the homeless sleeping there.
they give or wanted to give yellow triangles for them.
we wanted to make these sort of portocabin makeshift homes on the skirts of dublin.
shove em anywhere but dont let the affluent or the middle class have to think on 'social concience' and the least well off.
in america its now a crime to feed the homeless and where is that lovely old ninety year old arrested for doing just this now?
anyone know?
the roma have been routed from a site in france.
the travellers from a site in the UK.

we claim, that is the world claims that these people, all these unfortunate people are 'wasters' and 'no good' forgetting that society is based on professional classes and these are the higher paid jobs so without the sick and the elderly and the homeless we would have none of the following jobs:
doctors
priests/ religious
therapists.
OT's
Physiotherapists.
researchers
economists
law reform.
equality law
all these sorts of careers which in their high paid capacity not only works for the poor, but benefits directly from the poor in the course of helping the poor.
this my friend is what society and collective concience is about.
to say in a blanket statement 'just hide them' or 'get rid of them' is denying where wealth is generated and experience gained and research into disease and aging helps so much in real terms in the long run and we can do all that we do, far better with the help of the professional classes.
many will improve quality of life.
many will have better health and care services and the list is endless.

in ireland for instance we are fast becoming a nation where no one wants to be doctors in.
this is our fault for falling to the burocrats in europe who say we have to stem the cost of our health care system, but what we did then was created no health system with a dire shortage of doctors and expertise.
my twin and i have personally been sent to the UK twice this year under government funding as rare disease individuals, being twins we can be useful in this regard.
but we are going to be sending more and more will be leaving, just to get help which we actually could provide if we allowed change to happen.

another act of complete stupidity was retaining the HSE in its present format and engaging 10% more managers to manage the health service.
well we know well its this class that cannot manage the services in the first place.
i give you a salutary tale where the HSE bought with funds from the exchequer a christmas tree for the grand sum of 2,500 euros and its now sits outside Limerick hospital and twinkles away.
this is a lotta money in Ireland which is so bereft of funds that people are going without proper wheelchairs.

they are giving out ones that are eleven years old and crash its clients into stone walls, because wheels fall off and the client bombs bang into a wall on her way to a neurologist.
the wheels were put on by the wrong bolts.
so between christmas trees and no medical services, we cannot function as a healthy nation.

we need to function!
equality allows all to offer their skills to the table.
one senior social worker, who has spoken in brussels is still a vibrant woman but because she has no transport and the transport grants have been stopped over two years ago, her skill, her training, her lecturing at the universities and other has come to a halt.
she is a wheelchair user. she doesnt drive.
therefore Ireland are losing a very talented, skilled doctor of philosophy who trained up its own social workers in the HSE when she was a well woman.

this sort of crass treatment and denial of her gifts is outrageous but what more for Ireland its an utter waste.
not to mention her sister who has her own skills to offer but right now too bloody depressed and too engaged fighting for very basics to live as a disabled woman, seemingly having the same rights as everyone else, but in fact doesnt.

this is called actually the class divide.
the Greek now have risen up, i hope Ireland does too, i hope we do it peacefully, cleanly and in my lifetime.
i hope the diaspora will support this irish rising, for we are on our knees.
i want out of Europe where strong forces are crushing us and crushing the individual here.
i want a small nation to act like a small nation and be satisfied we can do well with what we have now.
we cannot even hope to be anything other then a TINY country.
many countries still have  never heard of us.
we are small.
i am ok about that.
i love ireland but not what is happening it right now.
i hate seen the struggle and depression in the vulnerable classes.
i hate it.
i would have thought by now Ireland would have been self sufficient, and caring nation for its own, its taking too long to get there.
but certainly i believe if we are outside the EU we can make a better go of it.

Last post HSE letter 2014; Last post HSE 2013 the same.....

it is the last post before christmas, or nearly.
today i received a letter from the HSe.
it was pretty much in the same vein as in 2013 when the last post produced a vicious letter from them.
i also got one on the first post of 2014 and i just wonder will i get one first post 2015.

i really do have issues around 'sensitivity' of the HSE and how they deal with sick people in Ireland.

this is not about health.
absolutely not about health at all.

I do understand that the HSe are capable of snooping into my blogs, in fact this is a directive of the HSE, do snoop and see what i am saying.

the callous disregard for patients, sick, disabled and elderly in Ireland is staggering, all from our Health Service Executive.

in other words the letter today told me to basically 'stuff my complaints against them, they have all been dealt with.'

i say, well in an investigative manner who dealt with them and who did they interview?

here is how it really works, an investigator can be the manager from the same area and same team manager of the same area and the same area managers i am complaining about.

so this is if you go onto their website the ability of the Irish to have Your say and complain is democratic right for us, but in fact you can have Your say, and then they will tell you 'stick it up your arse.'

for me, as a person wounded, hurt, traumatised in life and by sickness and disability i have an immense amount of common sense, intelligence, spirit and character. I will say to the HSE, when any of you get sick be prepared, you will be treated pretty much the same as you have treated me, especially if you need extreme care as an x-nurse who worked amongst you for over thirty years has and has been denied a medication to keep her alive.  I do not refer to myself here, but another case placed in the media and common domain.

you are the most wonderful bunch of crooks and callous individuals i think i have even clapped eyes on, and i have only met this type in the caring, loving HSE, the awful awful system present in the wonderful saintly and scholarly shitty little country called Ireland.

what i also say to the HSe, many know you for what you are, its a game to you but serious for us.
we need you but you turn the other way with the budget concerns in one hand and the lawyers in the other.
but health is not one of the things you care a jot about.
I hope i live to see the day the HSE is disbanded, that the Irish, the good Irish will stand up and say 'enough is enough.' we deserve a good health care system for our citizens.

for those wounded, hurt and harmed and abused by the Health Service Executive, i have begun a solidarity page on Facebook called 'victims of the HSE.'
it will soon become a private page because its sensitive, and people there deserve that.
go on and join if you have a reason to, i am waiting to galvanise the troops, and help us help each other get through our lives in a vulnerable state but with strength and courage when we have to deal with our caring public health care representatives of the Irish State, free so they say from oppression, like hell we are free from oppression.

for the good in the state, a happy christmas and gather your wits about you for a gallumping new year, gather calm, peace, and rest for the rest is needed for the battles ahead, if you are a decent person in this state, stand up to the evils in it.

Christmas time thoughts 2014

Ann Kennedy

21st December 2014

US!

Christmas time.

Christmas is a funny time of year for me.  It always has been.

I am an identical twin, i was supposed to be born along with the sis on christmas day, but due to Mum being far too large and far too tiny the gynaecologist of the day said he didnt think Mum should suffer further.

He induced us.

She gave birth to two healthy (?) babies.  We were over 6lbs each.

Ann and Margaret british museum, circa 2009.
when i went to UK to see the specialist

Wrapped in cotton wool in 1952 on the 25th November my mum was full of emotions.  Firstly she didnt want girls she wanted boys, and as she told us later in life she felt she was going to produce ‘monsters.’

We feel now maybe she wasn’t half wrong.

Everything seemed normal to all around us as tiny twins.

But seven years on we found we were not.  We were deafened by the viral contact in the womn of German Measles, ‘rubella’ and so we are in fact Congenital Rubella Syndrome Adults.

Rubella isnt well understood now as its been deemed eradicated.

We did not have a good childhood.

Times were difficult, akin to what Ireland is experiencing now but without much technology to lighten the load for my mother.

We also were from a priveledged background and my  mother and father had nothing to show for that, simply because like every age, wealth is such a movable thing.

It went.

Mum and Dad valued education and felt it was the way forward for their children.  We were encouraged to be ‘achievers.’

All six children were individuals, very forthright, strong and feisty.

We were no different in many ways but growing up this took decades to actually surface.

We were deaf without hearing aids all our childhood days and we were far more deaf than ever imagined.

With such deafness its astonishing i ever completed schooling and come away with an honours leaving certificate.

Fast forward, i was a lonely child then and in some ways remain so today.

I spent all my days in school either belting a ball on the hockey pitch or crying in the library, but keeping away from other children was my main aim in life. they terrorified me simply because at the age of 57 i learned i had Asperger Syndrome.

i am outside St Toms' watching people come and go, hated the wards and the heat, over in UK for tests found - chronic muscle myopathy 2008

It shattered me during my journey in life, unknowing all about why i was so unhappy and so different, i loathed myself.  i succumbed to deep depression, binge drinking and chronic years of self loathing and self injury.

Decades spent in and out of mental hospital and no way getting further in life.

I was talented indeed and wrote childrens books, some winning book design awards and two being made into mini slots for children’s tv.   This childrens writing thing  is not unusual for people with Asperger Syndrome.

Also not unusual either,  i was vulnerable and young for my age and naieve.

I was sexually abused as a child and then again by a Marianist Order priest, when i came into contract with the now deceased Larry Hogan the singing layman of the 70’s.

Trapped in terror i amounted to little.

I spent all of my adult life struggling, in and out of psychiatric hospitals. I lived in social housing far away from the wealthy belt of Killiney where i grew up.

I had no friends and closed off from the world i painted in a studio after which i walked miles around the areas where i grew up.  With many a dog in my life i had these as complete and utter companions.

The family was never close . the meal on christmas day in times past was enchanting and glittering.

It was a formal affair of upper middle class standards.  Some part of me lived on that day in awe but in fear.

My christmas therefore is not that particularly happy and drenched with memories for me.

My life was enveloped in fear.

Getting crohns disease and having surgery in 2002 was the turning point.

Thinking i would not get through this i chatted with a psychiatrist at the hospital.

She found me engaging, intelligent and utterly surprised at the medication i was on and also the amount.

When i nearly died from surgery i decided to get a life.

I sold a family heirloom to the National Library of Ireland and received E7,000 for these art journals of my great aunt ginnie.

Furthermore i didnt really understand my aunt and the fact that the National Library had a considerable archive of hers there.

To my astonishment two members of the Library, the director and another brought her whole lifes work to my social housing unit and we poured over the archives all neatly conserved by the Library with tender loving care.

My aunt was single, her name was Jeannie Conan.

I think she came to me at the right time.  Also another famous Conan is a relative, he is of course, Sir Arthur Conan Doyle.

Three years of therapy, followed by an apology for ever being in psychiatry i managed to quit the drugs, quit the self injury and also quit the cigarettes and i can assure you, quite a feat.

The bigger feat being, i fought to join the world, late yes, but surely did.

I experimented with clothes, and found my love of dress and colour, i had always shorn my hair very short but now let it grow and i experimented with my feminine side.

I loved it.

I felt attractive, i felt confident.

There was no going back.

Unfortunately just as my oil painting was coming to a real maturity and i was exhibiting quite a bit, i became very ill indeed.

I forced the medics to have me sent to the UK to find out what was wrong with me, i did considerable researc myself to find a point that i could start on this particular journey as i studied my bloods as if i was a research scientist.  I wouldnt have got this far if i had not done this.

Certain things have been discovered but now after ten years i am closer to knowing than ever before.

I have recently returned from Newcastle UK where i was under the great Prof. Chinnery and met also Dr. Grainne Gorman.

Us twins, yes both of us became ill roughly at the same time  are now wheelchair users.

Circumstances in social housing changed and i was persuaded to ask for rehousing due to my disablility but it turned out a disaster and i was placed in danger.

Being shot at saw myself and my twin spend a very difficult few years sourcing a place to live.

We had to move out of my county of my birth, something asperger people do not cope well with.

The HSE Wicklow has not been good to me at all, this is documented and can be verified.

We struggle here.

mags my identical twin exhausted, with my maggie mai, the twin got more than a shock and a bargain when she came home to Ireland.  She is still in shock

When i think of my age and how little i have seen of the world and also of Ireland and yet see how far i have come i struggle with the idea of how to spend my dying days well.

To me its now a case of wanting badly to make up for lost time.

Vicky Park, Hackney London

For someone lost entirely to life, only visiting my twin in Hackney once a year and never leaving dun Laoghaire i have not experienced that much.

My first overseas holiday was this year to finland, following the experts at the Mitochondrial disease conference there, for i was still attempting to find out what was wrong with me, that trip has got me now on the brink of knowing.  My first holiday being at the age of 62, effectively.

But what do i do with no money, very poor health, no friends and an unsupportive family?  I write to Santa.

I would love to see Ireland.   All of it.

I dream of buying a camper van, or similar.

I dream of driving slowly and having a ball in nature for truely nature is what has held me all this time.

I dream of having no more struggles to get the health care needs met and i dream of some joy before i die.

Ah babe, i know you will be close to me in my sickness and poor health

when i got sick duchess was alive and stayed close to me too in my very poor health.  All just never came near me.

I have no proper wheelchair and my van is dying.

I am too, i am dying of a rare, (seemingly it could be rarer than i ever envisaged, after my last exit out of Ireland).

I need to move.

I want to get back to the county of my birth, Dun Laoghaire and feel at peace.

2010 before i left my county we had wonderful snow.  Here i am in the People's Park Dun Laoghaire, chihuahua safe from icy snow on poor little paws!

the Quickie Jive wheelchair
we feel would offer us everything when we decline further and presently.  this is the model we fight for now, for the past three years and more

To me my end days should be fun.

Camper van.

A bungalow near my twin slap in Dun Laoghaire where i should be, not here in Wicklow which i do not know and know no one and havent settled well at all.

Christmas now is a few days away.

People are dreaming and planning their new year.

I am dreaming of planning a chance for a decade (if god is willing and good) of fun and peace and joy, to experiement with travel and just ‘be’ rather than ‘struggle to be.’

My life has panned out and potted out not well.

But i was always ready for the moment of getting into a world i never understood and never will, i guess.

Nothing really stops  me.

But right now my dreams can never be fulfilled on a disabilty pension and in a world where people are not as caring as say in my mothers time or when i was younger either.

How can i became the princess of the cinderella story, who will never marry a prince or wear that wee slipper?

My dream is to travel chariot style in a camper van.

After all, i learnt to drive at 53years of age and i now drive an adapted van, not many would do that.

I post this off now to one or two places, like stuffing the Santa letter up the chimney to be found in a hundred years.

ana chi asleep!

Or place it in a good spot to be discovered and realisation to begin to happen.

My dream realised.

With my dear twin and my dogs, will someone give me a chance to have one decade out of maybe seven to be happy, free and loving life.

Ok then the chimney i chose is yours.

I await but lets hope not for one hundred years.  Bones do not drive camper vans well, nor does a skull have eyes to see.

Take care.

Ann kennedy

I live here because the sister who gave my mother german measles and gave us rubella viral infection died prematurely and my dad left us her house in dalkey.

She has through death given me a home.

Now i want my parents, my sister and my aunt to rubber stamp my final wish.

Bless them.

Bless my twin, i love you so much.

Please allow a blessing for me this christmas.

If santa gets wifi where he is, he can find me on my blog cos it looks like he is either about to read, has read or will not read.  HA.  He can sleigh along and leave his pressie via the comment box or PM.

Old too soon, review of summary REVIEW

I was in bray co. wicklow today and found a summary review on disabled people in nursing homes, aptly called 'old too soon'  

there will be typos in my review of this review, but even seeing this, its a damming endictment on what ireland believes to be 'ok' for those who are disabled in nursing homes.

most of these disabled people were mentioned as never leaving their bedrooms, rarely leaving their bedrooms, never engaging in outside acitivities or rarely engaging in outside activities.

we are always calling ourselves a modern society, if you can see below what disabled people are expected to put up with its astonishing in a modern age.

and also astonishing that this review is over a year and a half old and if i am anything to go by, the medical model is alive and well and living in bray/greystones!

nothing has changed, even though a cluster group concerned for disabled persons say it should and say it must.

here is my alalysis as i believe there was a parallel with myself in this area but living in the community where this report clearly says internationally thats where i should be and most disabled people should be, once there doesnt mean they are neglected all over again! 

see what i say, say what you think?

report back to me on this report!

Old too soon

Younger people with disabilities living in Nursing homes in the bray and greystones area of co. Wicklow

Summary version

March 2013

Personal indicators that Ann Kennedy is on the right track for her rights to be met.

Although i am not in a nursing home, the instances of need are appropiate to myself living alone in the community of this same catchment area.

The need too of best practise is highlighted.

The need as well for the social model to be implemented over and above the medical model.

Page 17 of this report:

Living in the community, is recognised worldwide as being necessary to provide better quality of life, while still supporting the person to stay as well and safe as possible.

The Social-Rights based model, person directing their own supports style of supporting people with a disabiity is replacing Medical and deficits-focussed Models of Care

Please note this review of disabled people and approach to disabled people was published in March 2013.

It is done in the Bray Greystones area to which i have been living in during this time.

The emphasis on intrusion on Medical model of care was fully implemented in my case whereas both HIQA and the HSE now undertake as policy the guidelines for the social-rights model, person directing their own supports style of support, this has been denied me under the medical model with no recourse to my wish or my belief as an individual.

Page 18:

For many residents therapeutic or other health and social-related services (occupational therapy, Professional Social Care services, Key workers, speech and language therapy, psychololgy services, community facilitator), other than GP or hospital appointments and physiotherapy, were either not available at all, or only available in a limited manner, and privately paid for by the person or the NH in some cases.  Most had no contact with a Social worker from any service, and this was identified by NHMs as being a major gap, as having a named Social worker was viewed as a route to referral into other services, as a form of Case Management.  A small number of residents had accessed the CIB-funded National Advocacy Service.

This is shocking.

A year and a half since this report i would like to know if this has improved.

It states that unless you have private means you receive so little as  not to make life anyway more pain free, enjoyable or less stressful in management.

This i have found for myself living in the community.

For all intent and purpose, i own a home and that is it, it prevents me from being in a Nursing home, but after that i have as little as the residents in a nursing home.

It is deemed unacceptable.

It appeared that residents with ID or Physical Disability were not on the relevant HSE databases, such as the National Intellectual Disability Database or the National Physical and Sensory Disability planning systems, as would generally be the case if they were in receipt of services for disability providers.  While being on the NIDD or NPSDD is no guarantee of getting an appropriate service, it does ensure that the person is identified, has a Personal Identicfication Number (PIN), and is logged as having qualified and costed support needs. 

I have what is classed as a learning disability as in Aspeger Syndrome and also a Physical and Sensory disability.

Am i on the Data base for either NIDD and NPSDD and do i have a PIN number and have i been logged as having qualified and costed support needs?

Page 19:

An interesting conclusion to the above few paragraphs on changing circumstances the report includes this message:

As can be seen from this information, there is a strong message that the HSE Local Health Office wants to know and hear from individuals who want to change their arrangements – taken to mean housing and care.

Page 20:

With the absense of an independent person-centred review mechanism, it is usually impossible for many residents to give an informed view, state where and with whom they wish to live, due to their knowledge of options, communication capacity, fear of the unknown and known.’

The next paragraph states that clients in NH need to have knowledge on their benefits, access to social workers and other clinical services from the HSE and other Private sources.  Knowledge of how to apply for assessment of housing need and access advocacy and HSE enhancement packages.

There is a strong onus on the NH, as with all providers in this area to protect the persons basic human rights.

It is a worrying trend to keep disabled people in the dark.

I do believe before i fled to Wicklow there wasnt one single person telling or advising me on alternatives to a dreadful social housing unit housing provision for a person who was in danger there.

Lack of knowledge leads to poor outcomes as we see in my case coming here to greystones.

I do not know how to access a social worker, the HSE have denied me one.

I do not know how to access other clinical sources.

I have never heard of the HSE enhancement package.

These are vital even if not in a nursing home environment i am in the local area and the next sentence states clearly :  There is a strong onus on all providers in this area to protect the persons basic human rights.

I have always believed the HSE area of Greystones have not protected my basic human rights.

The HSE has denied me any options other than what they wish to allow me to hear of, allow me to avail of and are not conducting my care under the

(a)The Social-Rights based model, person directing their own supports style of supporting people with a disabiity is replacing Medical and deficits-focussed Models of Care

In dis-allowing empowerment through knowledge, through the Social rights based model my human rights have been violated profoundly and i have been denied my rights to allow me ‘live’ (b). Living in the community, is recognised worldwide as being necessary to provide better quality of life, while still supporting the person to stay as well and safe as possible.

Page 17 of this report.

Chapter 7:  themes for recommendations.

Page /22

·      The person gets lost easily; case management is, apparently, non-existent in the majority, if not all, cases reported on in this study.  Few people access advocacy at this stage.  It is known i needed case management, for i was in crisis, left a state funded housing unit in crisis and arrived in crisis against my wishes to a new county.  It is known i got lost quickly and easily and it is known i attempted access to advocacy eg requested psychological support, social worker and appropiate gp service for my disabilities.

In the situation i was in, the crisis was named and highlighted and ignored, even though i was known to be vulnerable, disabled and with a sensory disability, a physical disability and a learning disability.

·      Timely provision of individual support packages to enable people to return home with support, or transition to shared supported accommodation settings.

In the situation i was in, i was in effect moving away from state social housing and timely provision of my individual support package to enable me to be ‘home’ was all refused, there is little difference in effect from being in a NH here or being in a bought home here, i was here in greystones/bray under this HSE catchment area, the report clearly states its deficiencies, yet even as known, nothing was done for me.

·      Advance planning with targeted intervention in a timely fashion with people with long-term physical or intellectual disabilities, rather than waiting for a crisis to force entry to NH, through strong person centred palnning involving Circles of Support.

·      It is VITAL to note that I had asked for ALL of the above, and advanced planning for myself to prevent me being too old too young and in a NH was requested as a matter of urgency and denied me.

·      When i placed one before the table the social model was denied and i had to ‘take it or leave it’ announcement/pronouncement what the HSE would give, without any consultation or sensitivity to my wishes and my needs as under the social model policy now in practise in Ireland and as in Policy in Ireland.

Page 24

Suggested strategies: 

1.    (this is a review over a year ago by the Bray area Patnership cluster group) and we are now, even in austerity reviewing services and best practise, a plan for best practise is stated as being the solution, i consider this to be paramont, in my case.

2.     austerity does not deny me ‘best practise policy as laid out. 

3.    Austerity should allow me (a year after such has been laid down for nursing homes and applying for disabled persons) and  should also apply to disabled persons living on their own in the community, namely myself in this instance.

4.    Austerity and non residential NH disabled person should receive this equable belief in best practise as stated as policy in this report.

·      A review mechanism must include the person and advocate of his/her choice, must be person centred and must work to include the person’s perspective, even when this is difficult to determine, is changeable, is contrary to the family or medical views and/or is deemed unreliable.  The HSE placement forum may have a role in this review.  /  this is similar to the suggestion of routing of a review by the HSE Local Health Office Manager in the above comments.  This is uncanny and i consider although the word ‘must’ is used here, it has not been considered for myself, myself with learning disability, sensory disability and a physical disability.  I have always been cared for by the state and received state payment of disabilty pension from a very young age.

·      Establish a system for case co-ordination – the case co-ordinator would be required to work in partnership with the person and, where appropiate, their support network and the NHM, to monitor and respond to and highlight changing needs, and to seek out resources matched to the person’s changing needs over the future.

Case co-ordination was established, my suport network chosen and my changing needs over the future named, but no working in partnership has been allowed by the HSE, since the case conference with my support network yielded everything against all our suggestions for my wishes and needs to be met, a resounding NO on the medical ‘take it or leave it/you do not count, medical model ethos of what is now supposed to be passe in favour of the social model of inclusion.  Resources were matched to my changing needs but these were not accepted by the HSE.

·      Ulitmately, where no review of the placement is available to the person, and where the person is deemed ‘fit’ and the person considers, they cannot leave, their human rights violation issue for the person, and needs to be considered and addressed as such.

Human rights of Ann Kennedy have been violated, for there was no review available and i could not leave the medical model, be included in decision making which was denied me (adaptation grant/therapy options/keyworker suggestions and more)even though the Disability Act 2005, the Charter of Patients Rights, and the WHO recognises all these considerations as policy and accepted by the Irish Health Service Executive and named as policy even in the Rare Diseases policy recently launched.

On an annual basis, provide individual personal planning for the person to have a meaningful day and as full a life as possible.

Three and more years have elapsed since i have arrived in Greystones, i do not have a meaningful day and as full a life as possible.

I have been denied all of this under the HSE decision to never consider my needs as i have stated them to be and that of my network of supporters under the Disability Act, the charter of patient rights and WHO also under the new directive of the social model as policy.

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Explore with the person their preferences for community activity/or acessing day service off site.

·      The annual personal planning review shold seek out the person’s views and interests regarding community presence and participation; while going out tyo a day service or getting a volunteering role or even a job may be too demanding for some, the possibilities need to be explored for all residents.

In my view this very necessary inclusion has been made so that people have as meaningful and purposeful an existence as possible.

This should apply to all disabled people whether in their own homes or in NH settings, therefore i shall never be splitting my need as less than that of a disabled person under the care of the HSE in a NH situation, for i receive HSE care and am on a disability pension.

I have been denied my rights to any planning review, let alone a plan and not only never yearly but never even three or more !

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·      As noted in the HSE comments above, enhancement packages can be applied for to facilitate some of these interests; while these may be difficult to obtain and were not highlighted as NHM;s information.  These packages need implementation planning and monitoring over time to ensure the supports are delivered in an accountable and skilled manner.

Here i will not chose to say i am different because i have my own home, i live on a basic disabilty state pension and cared for at insistance of HSE and yet no package has been put in place for me in this catchment area at all.  IN fact a package on the social model has been denied me and i do not even have a package yet alone an enhancement package!

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·      Partnering with existing affordable and social housing schemes is necessary to the scale and variety of housing required for these individual.

I wish not to differentiate here for myself against those in NH.  I had wished to be independent, in the community but i am being denied the opportunity of a housing alternative to being in Greystones against my will and against my wish for i escaped a gun slinging social housing tenant and fled like a war victim to another war zone (HSE) greystones.

I need to be facilitated in an assessment of need to return home.  I mean HOME!

·      Provide timely access to assistive technology and customised equipment which may be different to that which needed by other NH residents.please note the operative wording ‘different to that which is needed by other NH residents, pertinent to my always saying my needs are not the same as others.

·      Identify funding streams, and HSE procedures for accessing assessment, provision of equipment, and training of use of, for example, aids to mobility, seating. My twin sister and i were never trained in the sue of our mobility aid, mine arrived in a box in the first instance and then with an OT and supplier, but only details on a standstill for all were pointed out.

·      Many people with disabilities, these are not just essential for best health and safety but are also essential for exercising the basic human rights of the individual, such as the right to Freedom of Movement, right to Freedom of Speech.

It is exceptionally nice to end my review of the review and find at the end the last paragraph being the ‘tour de force’

The BASIC human right of myself as an individual to Freedom of Movement has been denied me over a protracted period, this is stated in the Disablity act, WHO and Patient charter of rights.

The HSE of this catchment area Bray/Greystones have denied me this from the start.

Plenty of water today from a different Irish source, and its our birthday tomorrow

without further ado, i wish to wish my dear twin sister (relative) a wonderful birthday tomorrow, and i shall be celebrating it with you.  lets hope its a blast.

i guess you can say 'today was not one of my better days.'


I woke in diabolical depression, a combo of wondering what the hell life is about - anyway, and wondering do i really have to fight another day for medical needs to be met, something that is the question every Monday.

its a fact, in Ireland it seems relentless, the fighting for basics if sick and unwell and disabled.

reminded today through tears, that this all takes time, that is getting my health needs met and something sorted, takes time.

i say to the person involved 'surely to god three and a half years is enough time?'
there was a stop for consideration.
i think the hesitancy meant, she felt, yes its a while alright and a long time to get a few things sorted regarding health care needs met.

in a person aged 61yrs of age fast approaching 62yrs of age (tomorrow) three and a half years is a lifetime, wasted because of HSE, wasted through bullying, bitching, begging and torturous engagement.

three and a half years with a neurodegenerative disorder means i am worse now than three and a half years ago, so every day is a time for enjoyment, not bitching, begging and being shredded and tormented by health care officials.

We have had half suggestions 'yes we will'  then there is a pull back an inch 'well, who would if...' then again, 'this is a temporary wheelchair, yes.' followed by 'this is permanent'  regarding the 'yes we will,'  or 'yes we are considering'  that too has now translated into 'no we wont.'

we are talking here, bloody wheelchairs.

when also the same person reminds me that the HSE is broke and Wicklow has been  incredibly hard hit, i say well sure as eggs as eggs they drew on the empty well when finding the top barristers in the land to fight a case AGAINST me in the equality tribunal didn't they?

they have it when it is needed.
that is producing twenty files, all the hSE in wicklow and all that time, time and money for all that time.  spend on defending what i consider something they cannot defend because they have engaged in my mind, dirty practises, all along the way.

I bailed out as you know because i couldn't face it.
was i a coward then?
of course not.
but with FLAC even stating that the Equality Tribunal is anything but equal, you have to consider how can it ever be considered that when i couldn't afford a solicitor or barrister at all.
i was expected to fight against such a brutal organisation on peanuts when they had gold nuggets?

there is another case i have heard of, which is proving even more expensive by far.
it is causing a whooping lot of money both to do what they are attempting to do illegally and doing what they are doing at present, illegally.
strange to say, when they can want to prevent litigation, money is no object.

when they want to smother you too, money is no object.

the fact being Wicklow has over three years and more, done some weird things here.
giving OT's all across the county when we should have in place an OT less than five minutes away but to actually suit themselves, they gave me one fifty miles away and then another forty miles away, this is called MONEY, money badly spent on a whim.
another misspend is defective wheelchairs out to their clients.
hours and hours spent repairing the bloody things, hours of a Workman's time, and far more.
WASTE.

they do not have a one stop shop solution.
sort it at source and move on.
its an idea that the HSe have not grasped.
we sort this issue and then forget it.
to me it amounts to 'simples'  but no, never when we have the HSE involved.
its gyrations on a grand scale, for the like of me i cannot even conceive how they perceive it all to be cost effective.

when another HSE official drew me to the health centre in the name of physiotherapy, i was very depressed.
i told her i was, and it was obvious.
i gave her a bad time too, justifiably.
i had driven to the next town for twenty minute physiotherapy which literally consisted of her pressing a finger into each shoulder at the top and pressing down on the ball and socket joint.
then she turned my head left, and then right, then forward and then back.
followed by asking me to put my arms up and down and back and forth.
now onto the slab of a bench and can you remember what exercises i showed you last time.
i demonstrated for ten minutes and i got finally another print out and then it was out the door, that took all of twenty minutes.
that's mind boggling physiotherapy to me i have to say.
i asked her 'do you mean you got me to drive all this way for THAT!' take out the wheelchair, scoot along to the clinic twenty minutes of asking me did i remember exercises, which she could have asked me over the phone or indeed she could have said 'remember your exercises'  over the phone.

she wanted to question me about all my falls too.
yes well we have been there and done that.
i have been questioned.
the man who questioned apologised today he hasn't been to the house, he was in hospital.
well he has come here three times and done nothing and he has been my twins foot guy for all the time she has been here and she still hasn't got even one pair of shoes, for an inverted dystonic foot.

well the physio asked me 'what happened newcastle'  and i said oh we are still working on that, i thought she meant Newcastle in UK, but she meant Newcastle in wicklow.
its a psychiatric place.
i calmly said, 'if there was a health service i wouldn't need a shrink.'  and even then, i do not need a shrink.

lets say it was a bad day at the office/
i had received a letter from central command saying no they say we have wheelchairs that suit our needs but the woman mentioned above says, i am to expect another letter from her in the coming days.

jezus they screw you so they do.
why not send one letter.
it goes something like this:

"We would like to inform you that because it is your birthday tomorrow, we realised we had a lottery ticket we failed to cash.
in our good natured way we are VERY pleased to inform you that you are the lucky recipient of (wait for it) a proper powered wheelchair, a proper physiotherapy regime and a proper good fairy in the guise of a psychologist who will help you struggle forth with a neurodegenerative disorder.
he may or may not help you when next you are in a head to head with us!'

on another note, i think i would like to add this little nugget.
someone in my family said that i am not being invited to Christmas because alas the person who is having the Christmas celebrations only really wants the family.
HEY, relative!
relatively speaking....we ARE relatives.
just not married.
but we remain, relatives, of the blood kind, not of the extinct dinosaur kind.