Abl
The Newsletter of The All Wales Forum of Parents and Carers of People with Learning Disabilities
News & Updates
Summer 2008
ALL WALES FORUM NATIONAL CONFERENCE 2008 Thursday 16 October 10.30am
WHO CARES? What Does The Future Hold In Store? Speakers include:
GWENDA THOMAS AM - STEWART GREENWELL MARGARET GREGORY The Pavilion, Spa Road, Llandrindod Wells LD1 5EY FOR FURTHER INFORMATION PLEASE CONTACT THE ALL WALES FORUM: The Old House, Fedw Hir, LLWYDCOED, ABERDARE CF44 0DX. Tel: 01685 886558 email: elis.allwalesforum@comeuro.co.uk
—————————————————– FfCG CYNHADLEDD GENEDLAETHOL 2008 Dydd Iau 16 Hydref 10.30am
PWY SY’N POENI? Beth fydd yn ein wynebu yn y Dyfodol? gyda
GWENDA THOMAS AM - STEWART GREENWELL MARGARET GREGORY Y Pafiliwn, Spa Road, Llandrindod LD1 5EY AM RAGOR O FANYLION CYSYLLTWCH Â FFORWM CYMRU GYFAN: Y Hen Tý, Fedw Hir, LLWYDCOED, ABERDAR CF44 0DX. Ffôn: 01685 886558 e-bost: elis.allwalesforum@comeuro.co.uk
WHO CARES? The title of our 2008 National Conference has a deliberate ambiguity either a careless dismissal of interest, or a very serious question:
Who Cares?
(And who cares who cares? We could go on for ever!) Politicians speak passionately about the important role of Carers in society, but Parents and Carers are still left to worry about the uncertain futures of their loved ones, and indeed about their own futures. Perceived reductions in service provision, changes to the structure of the National Health Service in Wales, the proposed inclusion of all Learning Disabilities services within a single Mental Health Board covering the whole of Wales, changes to benefit entitlements: Parents and Carers still face an uncertain future, even after over 20 years of struggle to get their voices heard. Therefore the themes of our 2008 National Conference will grow out of the hopes and aspirations of three typical parents/carers, and of those for whom they care: a young person of school age; a young adult; an older adult. Each of these people may have had similar experiences, both good and bad. Each may have similar aspirations. But there will also be differences. By listening to their individual stories it is possible that we can focus on the way forward. ×××××××××××××××××××××××××××××××××
In addition, we have three guest speakers who will be of interest to all who attend: GWENDA THOMAS AM, Deputy Minister for Health, and Carers’ Champion; STEWART GREENWELL, Director of Social Care and Housing for Torfaen CBC, and Co-Chairperson of the body that produced The other end of the telescope - the ‘Burrows-Greenwell Report (2007)’ referred to in A Well Being and Mental Health Service Fit For Wales written by Professor Michael Williams in April 2008; and MARGARET GREGORY, Service Manager, Learning Disabilities, for Wrexham, one of the first local authorities in Wales to the In Control model of Self-directed support. We hope to see you at the conference. Complete the enclosed form NOW! Elis Jones—Director A W F P C
Earlier in the year we were very sorry to learn of Dave's death after a short illness - this was indeed a loss to the All Wales Forum. Dave had been a Trustee of the Forum for many years – how many we are not sure, but it is probably in excess of twelve. He brought to our meetings his experience, not only as a parent of a severely disabled daughter – Alison – but also as Chair of an association for people with learning disability who were leaving school and entering into a care situation; he had also been a director of a residential home in the Birmingham area for people leaving long-stay hospital . When he moved to Pembrokeshire he became very involved in the High Support Association and the Carers Outreach Support Group in that county.. We shall miss his straight-forward common-sense approach, his sense of humour and also his camera skills at our conferences and other special events. We wish his widow, Joyce, his daughter, Alison, and other members of his family the very best for the future. Norbert Flynn
We hope that you have found this edition of Abl interesting. But in order that we can keep in touch with you and bring you the latest information, we need to make sure that we have your correct contact details. Please take a look at the address label on the envelope in which this copy of Abl was sent to you, and let us know if we need to make any changes or corrections. Also, if you are have an e-mail address and would like to receive messages from us by that method, please let us know: AWFPC, The Old House, Fedw Hir,LLWYDCOED,ABERDARE, CF44 0DX. 01685886558 elis.allwalesforum@comeuro.co.uk We shall soon be launching new website for the A W F – Look out for full details!
This was a workshop question a group of people involved with Learning Disability services - managers, providers, carers - was asked to consider in an WAG workshop as part of the pan-Wales consultation exercise on the paper presented to Edwina Hart by Michael Williams on the future of Mental Health services in Wales. And there was a fair amount of argument about the question, which was considered by the group to be the least irrelevant of those pre-prepared for the afternoon workshops. The room itself was small and stuffy, and the temperature within it could not have been higher. The facilitator – who by her own admission had no experience of the field of Learning Disabilities - attempted to diffuse, clarify and collate the various impassioned responses as, one after another, individuals expressed their anger, their frustration, their amazement that we should all be sitting in a room in 2008 debating whether or not LD services should be part of a large, amalgamated service for Mental Health in Wales. By anyone’s standards it was an explosive session. And yet…. when had I last been with a group of people, from Directors of Social Services, managers, providers in both the statutory, voluntary and private sector, service users and carers who spoke so passionately and with a common voice? The energy generated was truly extraordinary. The , or , outlines a proposal for the formation of a single body, unique to Wales, that would be responsible for well-being and mental health care services in Wales. It would be governed by a Board consisting of service users, professional and community members, as well as those with law, finance and IT skills. There would be 3 Regional Boards and Local Partnerships. The rationale for this single entity was based upon what Michael Williams believes to be the discrepancy between the ‘gross amount’ spend in Wales on mental health services, and the ‘net amount’ received by service users, which, he felt could be better managed. There are four short paragraphs within the Paper that refer to Learning Disability services, which would be entirely accommodated within the IMC as leading body, ensuring that ‘well being is assessed and provided for’ as well as ‘providing for people with learning disabilities who also have mental health issues.’
During his presentation on the IMC in Cardiff, Michael Williams prefaced his remarks around Learning Disability services with the comments that he had attracted a great deal of criticism for attaching LD services to his vision of an all-Wales Mental Health service. He then went on to contextualise his proposals in the Paper with the comment that LD services are ‘patchy, seriously under-funded and, in many cases, rooted in the 80’s.’ None of us would disagree with that! He had also made previous reference to problems with partnership-working, which he stated flatly ‘failed to work’; partnerships are ‘short-lived, rely on the strength and commitment of individuals’ and attract layers of bureaucracy which create barriers and administrative problems. Again, most of us would recognise some truth in this. What Michael Williams’ Paper fails to recognise, however, is the fundamental fact that learning disability is not an illness, and that the NHS is, for very sound reasons, not the lead agency in delivering support for people with a learning disability in Wales. As I have just indicated, despite improvements such as the overdue closure of longstay institutions, the NHS does not have a good track record when dealing with learning disability services. There are substantial training, time, and environmental issues which will probably always dominate, and the location of Learning Disability services within a large body overshadowed by mental health is unlikely to enhance the interests of a small but very significant group of vulnerable people whose rightful place is very firmly within the community, where incidentally most people with learning disabilities live, independently or with their parents and carers. It is also fair to say that massive strides have been made in the last 25 years in Wales with a government-funded programme of community-based opportunities which have challenged stigma, and promoted a rights-based agenda, extending real community presence and active personal control. No, we haven’t quite got it right. Yes, there is considerable danger that, with the loss of ring-fenced funding, vital support is being eroded, with cash-strapped local authorities looking to cut budgets, and private providers seeing opportunities to fill ’gaps’ in services across Wales. Yes, we do still (and I suspect always will) rely on the dedication and commitment of individuals who advocate loudly for those whose voice is often unheard. But we know that there are good local working practices, effective multi-agency partnerships which include service users and carers, innovative and creative service designs based on values around personal control and contribution. My message to the minister is that we need to strengthen these with better, and sustainable hypothecated funding arrangements, an independent Commissioner for Learning Disabilities, and, in line with other services in Wales, a National Service Framework. Then we can continue to watch the ascent of the learning disabled as they take their rightful place at the centre of life in Wales!
Letters
My son has been in receipt of a Direct Payment, managed by myself, since November 2004. I applied for the payment to provide him with an alternative to using the Day Centre for one day a week. The sum given to us at that time was just over £40 per day, which was meant to allow us to replace the 7 hours of service he received in the Centre. Right from the start of using a Direct Payment there was a shortfall. I purchased a service from an agency already familiar with our son and in which we had confidence. The price for seven hours was £77, which included administrative charges. Although disappointed that the Direct Payment would not meet the whole cost, I decided to proceed and fund the difference myself, in the belief that the benefit to him out-weighed the cost. Since November 2004 we have had to increase our subsidy of the Direct Payment twice. The current bill is £84. However, I have felt aggrieved for some time that there has been no increase in the level of the Direct Payment – not even a cost of living or inflation rise. The gap between what is given and the cost incurred has steadily widened. For at least the last two years I have tried to highlight this issue in every arena possible. No one ever seems to raise the issue of Direct Payments where the replaced service is not costed on a one-to-one basis. Our son is on one-to-three care in the Centre but requires one-to-one outside of it. The figures don’t add up! I have attended several seminars where Direct Payments are being encouraged for all client groups, but I feel that this issue
is not discussed honestly. People need to be told that the payment does not always purchase as much care as is required. After many meetings, letters and phone calls, I have finally ‘bullied’ Social Services in to re-calculating the Direct Payment based on the current cost of a Day Centre place. This has resulted in an increase to £48 per day and there will be a lump sum payment to cover the shortfall since April 2005. This is still a long way off meeting the bill, but it is a more honest sum. It has been important to me to at least make sure that my son received a fair payment, however, it grieves me that this had to be fought hard for and was not automatically given on an annual basis. Why aren’t Direct Payments recalculated on an annual basis, especially since the Independent Living Fund does increase along with the cost of the service purchased? Through this article I would like to advise anyone in receipt of a Direct Payment to check the cost of their payment against the ‘yardstick’ used to calculate that payment. Costs for everything else go up annually. How can those purchased with a Direct Payment not be expected to do likewise?
Contact Details: All Wales Forum, The Old House Fedw Hir LLWYDCOED ABERDARE CF44 0DX 01685886558
Email: elis.allwalesforum@comeuro.co.uk
OUR MISSION STATEMENT: Giving a national voice to empower parents and carers of people with a learning disability. OUR STRATEGIC AIMS: 1. to raise the profile of and to represent views and concerns of Parents and Carers Wales-wide; 2. to increase access to information on rights which affect all members; 3. to build stronger networks and partnerships across Wales to help shape local and national services; 4. to lobby and campaign across Wales on national issues affecting Parents and Carers. All Wales Forum of Parents and Carers of People with Learning Disabilities (AWF) MEMBERSHIP APPLICATION FORM I / we would like to apply for membership of the All Wales Forum. (Tick relevant category of Membership) Signature: …………………………………………………………….. Date: ……………………………………………………………………... Name:…………………………………………………………………….. Address:..……………………………………………………………... .………………………………………………………………………………. ………………………………………………………………………………... Postcode………………………………………………………………… Tel No……………………………………………………………………. Email…………………………………………………………………….… Contact name if for Organisation or Group ………………………………………………………………………………... Make Cheques payable to A.W.F.P.C. Please send completed forms and cheques to:
Category
Eligibility
Sum Enclosed
Full Member Parents or informal carers of a person with
0 00
Full Member - Voluntary LD group
Voluntary groups established primarily or significantly to provide services in the field of learning disabilities - Fee £0.00
0 00
Associate Member Individual
Individuals (including paid carers) who are not eligible for full membership - £8.00
Associate Member General
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learning disabilities - Fee £0.00
per year
per year
Donation (all donations towards the work of the Forum are appreciated)
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