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health / disability issues |
Tuesday July 19, 2005 12:22 by Miriam Cotton
Crosbie discusses how Down Syndrome Ireland have become more effective as a support organisation.
When Alan and Mary Crosbie's fifth child was born with Down syndrome they discovered how little help and advice were available to parents in their situation. They threw themselves into doing the best they could for their son Rob, who is now 6 years old. Alan Crosbie discusses the strategies which Down Syndrome Ireland has used to make a real difference to the lives of people affected by the syndrome - whether as individuals, carers or professionals working in the field.
Down Syndrome Ireland, the national voluntary group representing people affected by the syndrome, have been working in recent years to become more effective as a national support organisation. Voluntary organisations everywhere could learn a lot from what they have achieved. Since 2002, DSI have been helped by their current President, Mr Alan Crosbie, an experienced businessman who is also Chairman of Irish Examiner Holdings. ‘When I began my four-year term at DSI’ says Crosbie whose fifth child, Rob, was born with the syndrome ‘the first thing we did was to go on a tour of the local DSI branches to see how people felt the organisation was functioning. What we found was that, while local branches were doing good work, the national organisation played no serious role in their lives, so we knew we had to change that. DSI had commissioned ground-breaking, world-renowned research into the syndrome so we already had the evidence for what was needed.’
The question then was how to put what they heard learned into practice. Having identified, among other things, a lack of knowledge among teachers, doctors, speech therapists, occupational therapists and others, DSI decided to adapt one of the principles of Crosbie’s Jesuit education at Clongowes Wood and they set out on a mission to “train the trainers”. ‘We found out, for instance, that speech therapists – whose services are vital to Down syndrome children – have only 1 day devoted to Down syndrome during their two-year training. Equally, the health and medical needs of a person with Down’s are not as well understood by GPs and other health professionals as they should be and this can lead to unpleasant consequences for the person.’ Alan gives the example of a child who refused to wear glasses. It turned out they were too narrow for the bridge of her nose – a common feature of the syndrome - and were painful to wear. The problem was not identified for nine months during which time she was persistently encouraged to wear them even though they were uncomfortable. As soon as a properly fitting pair were provided she wore them without a problem. This is a relatively minor example of the misunderstandings that can arise for all people with disability.
DSI targeted their efforts into six categories of support: medical, counselling, early intervention, speech and language therapy, education and adult independence. They have produced invaluable magazines on each of these topics with comprehensive information on for example, the learning profiles of people with Down syndrome, detailed teaching strategies for reading, maths, socialising, devising and implementing whole school policies to ensure the proper integration of each child, the role of Special Needs Assistants and much more. During the last two years, Niamh Ni hAogain, former teacher and Educational Psychologist at DSI has run seminars for over two thousand teachers around the country and has found the profession receptive to the advice on offer. ‘Teachers already have about 95% of what is needed - all they need in addition is some confidence and a little knowledge’ she said, at a recent presentation to the West Cork Parents Action Group in Dunmanway in April.
There is also an excellent magazine – Footsteps - for hospital staff and new parents. New parents have often had needlessly upsetting experiences in hospitals on discovering their baby has Down syndrome. Crosbie says ‘there has been a big sea-change in parents’ attitudes in the last 10 or 15 years - where people used to be ashamed, now they are proud. Down syndrome children are cool!’ For GPs, there is a summary of the research referred to above which gives advice on health needs and on the most common problems experienced such as with growth, cardiac disease, thyroid disorders, hearing impairment and cervical spine instability. DSI support for older people is based around the principle of independent living. ‘90% of people with Down syndrome are capable of living on their own but only 20% of them do. This is such a waste of potential – with the right interventions and supports, our children can be taxpayers eventually.’
Every voluntary organisation would, ideally, have an Alan Crosbie at the helm. The voluntary sector has more than its fair share of dedicated, able people working tirelessly to address a multitude of gaps and failures in state provision, but what can’t be denied is that where ability and commitment are combined with an extensive list of personal contacts at the highest levels of government, business and ‘society’, objectives that had previously seemed unattainable are more likely to become reality. ‘It has obviously helped that I knew how to find and use publicity’ Alan agrees but he stresses the professionalism of the DSI team as being the most critical factor in the success DSI have had to date. ‘DSI are only funded to the tune of about 150KEuro per year – all of our other income – about 1m Euro per year - comes from fundraising’. High profile, celebrity patrons such as Pierce Brosnan have also made a big difference. Supporters and donors can look out for the DSI Honey Day every October and also for their HB Ice-cream Sundays which take place each May.
Although Down Syndrome Ireland has had relative success in its fundraising and public relations efforts, it would be wrong to imagine the needs of people affected are adequately funded. As with other disability groups, there is a chronic shortage of many vital services such as adequate respite care. The harsh reality for DSI and other voluntary groups is that the old road of cake sales, raffles and all the usual fundraising activities must still be trodden – most often by already exhausted parents who are also at breaking point from the business of trying to find therapeutic and educational supports for their children while coping with the additional demands of their children’s varying conditions. ‘Parents should not have to do these things. These services should be willingly and adequately provided by the state’ says Crosbie. ‘I don’t understand why it is that when you speak to politicians individually they are sympathetic, but collectively they seem incapable of doing anything to make a difference. They just don’t listen. A huge case in point is the Disability Bill. After all the promises and talk about heeding the voices of the disability lobby, the government goes off and introduces a bill against all the advice of the very people they had pretended to consult. People are furious about that. For Frank Fahey to say that Ireland would be the only country to introduce rights-based legislation for disabled people and that therefore we shouldn’t do it is as facile as it is wrong. On that basis, we would still have slavery and many other forms of blatant discrimination long since outlawed.’
Crosbie says ‘DSI are due to see the Tanaiste, Mary Harney in the next few weeks. We have submitted a proposal, costed at 2m Euro, for the training of 15 Down Syndrome specialists who could go out to every corner of the community ensuring that every parent and professional was fully informed about the syndrome. This would have a huge impact on the quality of life of so many people and it represents an extremely cost-effective strategy in respect of the long-term benefits that would result. We have been four years trying to get to this point and, fingers crossed, we very much hope that we will succeed this time.’ Let’s wish them the best of luck.
For further information or advice contact the Down Syndrome Ireland Helpline on: 1890 374374.
(Article as from the Able Bodies column- as appearing in the West Cork People Freesheet.)