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.

Page 25:

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 !

Page 26:

·      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!

Page 27:

·      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.