Caring and Ageing …… January 22, 2017
Posted by irishelectionliterature in Uncategorized.trackback
Last weekend I put the Christmas Decorations back up in the attic and found the old video camera packed away. I started watching the tape in it and we ended up connecting it to the TV and watching a few hours of tapes. The tapes covered between 2002 and 2007. We laughed, remembered and it was good fun watching. Afterwards we asked the children (who are 12 and 16) what they enjoyed the most from the videos. ……
Their answer was seeing their Grandad in action, when he was well…….. and now we are not sure what would happen if we showed him the videos. Will he be sad too, how will he react?……. will he react at all?
Cue Monday evening and watching the excellent Documentary “We Need To Talk About Dad” on RTE1 and it hit home as we are reaching a stage where we have the same dilemma regarding care for a loved one. Not a Stroke like Mr Courtney had but Alzheimer’s…..
My own Grandparents had passed away by the time I was two so I never knew them, however now as people live longer there is the question of care. It appears that the Governments Fair Deal scheme only applies to nursing homes rather than caring at home. The cost of caring at home is prohibitive for many unless there are a number of family members with the time and the will to help out as part of a rota. ….. yet as the age we live to goes up, the size of families has gone down, allied to that there are very few families where all the children are still in the locality of their parent / parents , some may be abroad or in urban areas too far away from the home to help.
Even when you do have children helping out invariably there is one that doesn’t “pull their weight” , which can lead to family conflict and stand offs over care or indeed giving a break to the primary carer.
I assume the lack of “Fair Care” scheme for the home is that it would involve the payment of an outside agency to do a good deal of the caring rather than a family member. Of course too the existing Fair Deal scheme involves an asset in the family home, not everyone has an asset.
It’s a complex area and one that many of us will have to deal with or have dealt with. Am curious if The AAA, PBP , WP or any of the other Left parties have specific policies around aging and caring?
The Cedar Lounge Revolution 
Fís Nua (which I represent as a Green Left Party as delegate/ observer in European Green Party for the last 2 years and sit on the EGP Disability Committee) does and raises a lot of issues as many are disability advocates and are people with Disabilities and/or Carers as we have several people with Disabilities on the Federated Party Co-Ordination Committee, representing diverse disability groupings from the National Council of People with Disabilities National Board.
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The facilitation of builders – in giving way on once-off housing and vast suburbs – is going to come back to bite us as that generation get into an age group where many can no longer even drive.
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There’s a few of my friends down the country built on the farm beside the parents house. Talking to one of them at the weekend and they talked of the relief that their mother got the driving licence renewed again, were that to go it would put all sorts of stress on her family as they are the only ones local, both of them work and none of the children are of driving age yet either.
I’m sure that’s repeated around the country.
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I would be happy to be corrected but I think that these types of issues are some that the likes of AAA, PBP and WP are not strong on. While they feature in manifestos, I have not seen members of these parties introducing legislation etc. in the way that they have managed to do for other issues.
I spoke to a friend who has an adult sibling with ASD in Ireland. Their sibling has no right to housing or care that matches their needs. In the UK, these rights exists (even if some have to go to court etc. to have them realised). There is an assumption that families will care for adults who are ill or have disabilities. The alternative for most is residential care often with little regard for placement type. The attitude of HSE agencies is often that they are providing a charitable service and people should be grateful for what they receive.
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+1 Services for those with ASD are abysmal. A friend of mine has experience of same, or lack of same. And as you say it mirrors an attitude that this is charity…
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Indeed – That is why Fís Nua is made up of and run by a majority of people with disabilities. The Headquarter in Ireland – is the same Shannon base of the Irish Council for Aspies and Autistic Networking – the Autistic Self-Advocacy Network for Ireland AND the National Council for People with Disabilities.
I represent Autistic community in the European Autistic Network and European Neuro-Divergent Forum AND was after the European Green Party Convention November 2015 (Monday after the Paris attacks) went from Lyon across the border to the Secretariat of the United Nations Convention on the Human Rights for Disabled Persons Secretariat in Geneva on Irish Ratification and where Ireland is and is not – I was a member of the First National board of the Irish Council of People with disabilities.
We have an apartment/office in Belgium which is funded by my Disability Allowance which autistic, people with disabilities, carers, family members, social inclusion and rights representatives like me to bring issues and have access to European and International groups, and have in the last month met US and Dutch representatives in Brussels.
We DO NOT represent service providers or state bodies, we are independent advocates and service users with autism and disabilities and work as unpaid volunteers for the common good, so as not to be prejudiced or manipulated by having to work with those whose sole aim is to control, maintain and exist of our backs. Look us up on facebook and can join our groups – as everyone has exactly the same rights as people with disabilities to access and representation, family members and carers with disabilities can also get involved
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Sounds interesting Damon.
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We are looking for help to develop a National Autistic and Disability center, for our board and committee and conferences to be based in in Cloughjordan Ecovillage, close to many interchange points and particularly by car, bus and train routes from Shannon to Dublin airport.
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You may notice that as an autistic advocate, I had to register the Âû for Âutistic ûnion after my name in the High Court, after deed polling as many refused to accept me as such. I was born with and non-verbal Autistic from birth until almost 4 years old. Throughout my life my different immunity, physical, sensory,communication, developmental, learning social and mental emotional status stood out and I raised issues all my life for the good of others. After collecting trait after trait after trait, issues and atypical responses which now are called co-morbidities a Psychiatrist read about Asperger as was known in the Canadian Journal of medicine in 1990 and I was suggested, tested and confirmed in 1991 – around the same time I was setting up Star Trek social clubs. My outlook is being a catalyst to support and enable others; bring my experience and abilities, skills and help them to help themselves. We have been involved in so many appeals and complaints over the years you would not believe,attended and supported people in court and shown the flaws and proposed changes for the better; it has made me naught but very unpopular for many in the establishment for them to fall fowl of their own standards. In 1993 I raised, after attending the CRC the pay and expenses in Rehab group of directors, and advanced the rights and systems failed, culminating in a walk out by over 3/4 of the audience during the penultimate FrontLine. People hear and ask me questions and I am what I hope others would be, but naturally. Nothing about us without us is the Central principal of the UN Convention;all groups and committees ONLY have rights and powers of representing us if they are run by, controlled by and ,made up of a majority of us people with disabilities and while parents, family, carers are allowed, it is ONLY us who legally under the UN convention and Lisbon have automatic consultation and participation at all levels of government, state and public funded bodies. Membership is free and open.
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Sounds like good and necessary work you’re doing, Damon.
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Free – people like us supporting others like us. e.g. http://fisnua.com/contact-us-2/ ; http://galway.ncpd.ie/ https://www.facebook.com/groups/NationalCouncilofPeoplewithDisabilities/ https://www.facebook.com/groups/autistic.parents.ireland https://www.facebook.com/groups/Autism.Speaks.Autistics.Speaking.for.Ourselves/ Damon@NCPD.ie – 29 Ballycaseymore, Ballycasey, Shannon Town, Co. Clare
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“Am curious if The AAA, PBP , WP or any of the other Left parties have specific policies around aging and caring?”
Great question. Further, do any of them have specific worked-out policies around all kinds of other issues like housing, employment, education and so on?
Isn’t that what a serious, socialist left opposition should do? That is, develop a suite of policies on all of these issues which they would implement when in power – a programme for government – and put that before the people and seek their support.
But I suspect the ‘revolutionary’ left, which all these parties would claim to be in one form or other, is wary of getting bogged down in parliamentarianism and end up like the Labour Party ended up.
Anyway there’s me making that point without even checking their websites to see what’s up there.
Personally, on ageing and caring, my mammy will be 91 in March, le cúnamh Dé. She has dementia so the memory is gone but her gentle contented personality is still there. She’s still at home thanks to my sister. I mind her of a Sunday and I can still get a chuckle from her. Go maire sí an céad.
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I don’t think that’s a fair comment as applied to the WP Joe. I’d agree that those detailed policies don’t exist across the board but to give one example the WP’s recent policy document on solidarity housing, complete with a financial analysis of how this can be done, shows that such policies can be put together where there is a sufficient political requirement to do so, as is the case in the housing crisis, and where the capacity exists within the party to formulate such policy in the necessary detail.
I think your general comment about parties not wanting to get into this does apply to the Trotskyist parties and their front organisations. Or at least could be a contradiction within those front organisations where the likes of the SP and SWP are ideologically disinterested in proposing these types of revolutionary reforms.
But yes, this is exactly what a serious Left opposition should be doing, I agree entirely.
If you’re interested in contributing to the process of such policy formulation yourself Joe you know where to go knocking. There’s a working group on education on-going at the moment for example.
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I forgot the links to the housing policy. Here they are:
Click to access Solidarity-Housing-7.pdf
Click to access Financial-Housing-Policy_FINAL.pdf
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Thanks Alan. And fair play to WP on that work. I won’t take up your invitation to contribute just for now. However, I will make myself available for the Minister of Culture position come the revolution/left victory in a general election.
And again, I may have been unfair to SP and SWP too on the overall point. If any of their cadres are reading, feel free to enlighten me.
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Re social care and the UK – it is the responsibility of local authorities and can vary enormously. And here in Wycombe, the local housing stock was hived off to a private management company who have reneged on the commitment to adapt houses for residents as they get older.
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Click to access Housing-doc-2.pdf
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A lot of work we have done over the last few decades is working on creating accessible design standards, and working on planning applications and forced services in institutional care.
We work in practical areas dealing with real people assisting as MacKenzie’s Friends and advocates assisting behind the scenes – raising appeals or objections to being told what they have and can do.
With Ireland ratifying the UN Convention, we will be required as norm to actively consulted and participate in decision making.
Everywhere around the country census shows incidence of different disability, service needs and care needs and requirements; varying from (using a bad limited view) from 18 to almost 50%; but these do not cover ALL Disability types and categories .. the under-reporting thus remains serious problem.
In Denmark and Sweden free public health service enables proper statistical analysis – all diagnosis and disorders characteristics are stored by health number; this helps bring unconnected diagnosis together – allowing for example people with multiple autistic co-morbidities to be “Autistic Diagnosable” such as AD(H)D, OCD,ODD, GAD, A/SND A/SPD, SLD / Dyslexia / Dysfleuncy / Dysgraphia / Dyscalcula / Dysnumeric, Stammers,stutters,co-ordination,gastrointestinal, and food allergies, etc such common things enabling a suggestion of an ASD present,resulting in Genetic testing,and functioning Magnetic Resonance Imaging to know what the life needs can be and how to maximise and support a person throughout their life.
Such thing enables and supports the care needs, and suggests common genetic traits may need testing and identifying when and how supports are needed and what options and supports need to be planned for. Knowing what is likely and how and what may need what supports leads to future planning of services and supports during each individuals social and medical lifecycle.
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