Thursday, August 20, 2009

People are doing it for themselves

Down Syndrome congress begins

More than 100 people from across the world living with Down Syndrome gathered in Dublin today to discuss issues affecting their daily lives, with independent living and employment among the topics up for discussion.

About 120 adults got together for a parliamentary style debate at the Royal Hospital Kilmainham to share their experiences on rights. One of the main themes that emerged on the day was how people with Down Syndrome are perceived by society, the organisers said.

The event, which was run by Down Syndrome Ireland, came a day before the main World Down Syndrome Congress takes place at Dublin City University.

There are about 7,000 people in Ireland living with Down Syndrome, with adults facing challenges in areas such as employment and education opportunities, a spokeswoman for the group said this morning.

"The majority of people with Down Syndrome now go through mainstream schools," DSI's independence officer GrĂ¡inne Murphy said. "At that point education comes to an abrupt end."

The synod, which was the first of its kind, was recorded and the various issues raised by speakers will be analysed according to country before a paper is prepared.

The group is hoping the event will raise awareness in Ireland, and said the event would give adults their voice.

"So many adults with Down Syndrome are not in meaningful employment or not in further education," Ms Murphy said. "We need to create awareness."

Ms Murphy called for the colleges to adapt courses for those with particular needs.

Ireland East MEP Mairead McGuinness told the synod there was a danger that that progress towards greater equality for people with disabilities made in recent years would unravel.

Ms McGuinness, who is a member of the European Parliament’s Intergroup on Disability, said that the recommendation of the McCarthy report that disability policy should be moved to the Department of Health and Children would be a "retrograde step".

“It would regress years of progress back to the days when disability was seen as a medical problem rather than a social issue. Under the ‘equality’ remit the focus is on encouraging independence and the inclusion of people with disabilities in the mainstream of Irish life, something that was hard fought for over the last decade,” she said.

“The ‘equality’ focus was challenging Government Departments to look afresh as disability, be it access to services, access to transport, access to training, access to a job, as well as to health services. Many people with disabilities are otherwise very healthy."

She also called on the Government to restate its commitment to the National Disability Strategy's objectives.

The World Down Syndrome Congress begins tomorrow, with health, educational and research practitioners meeting at DCU to discuss the theme "lifelong learning".

Tuesday, August 18, 2009

Lack of Inspection of residential centers continues

Nearly 400 children with an intellectual disability are in full-time residential places where there is no inspection of quality of services being provided and no inspection of the wellbeing or health of these vunerable children.More than 500 other children attend residential places on a part-time or occasional basis.Welcome standards for residential services were published by HiQA in May this year following pressure from disability advocacy groups. Independent inspection of residential services is urgently required to protect these children, undoubtedly many examples of best practice will be discovered but the lessons of the Ryan Report tell us that we cannot 'trust' that all service providers will meet the standards required.

McCarthy Report Recommennds Attack on Rights of Children with Special Needs

Children with special education needs have been the first to feel the cuts in resources in education even before the publication of the McCarthy Report.Parents and educators understand the immeadiate impact these cuts will mean for the hundreds if not thousands of individual children affected, how the self esteem, learning, social integration, emotional development and behaviour of each of these individual lives can be negatively affected.

The department of education talks about the 'transformation' of special education needs rovision in the recent years and numbers and figures are quoted as evidence of this transformation. There is no doubt that there has been increased funding in relation to special education needs and welcome progress has been made however, given the appalingly low base that special needs services were starting from it is a job that is still only half done. If we look to our neighbours in the UK or America we see that we are 30-40 years behind in terms of legislation and education provision.While parents in these juristicions will point out that none of these systems are perfect, it does highlight just how far behind we are in Ireland not only in terms of actual resoucres but in our philosophy, understanding and governmental response to the needs of children with special education needs. It is shocking to think that we have not enacted rights based legislation for children with disabilities before now and even more
shocking that the EPSEN Act has been stalled and never fully implemented. Service provision for children with special needs in Ireland seems to still be based in an archaic charity based ethos of giving rather than a 21st century rights based model .

It is difficult to understand the governmental mindset which promotes cuts in already underfunded services for vunerable children.Mr McCarthy advocates that these specific cuts in special education are made, on a recent Newstalk interview he actively promoted these cuts in special education provision for the 'handicapped' children as he called them.A jarring phraseology stuck in the 1970's and refelective perhaps of his regressive mindset on this issue. Unfortunately, the only 'handicap' these kids have is the archaic and uninformed beauracracies who it seems are incapable of making the jump to rights based service provision.MrMcCarthy went on to glibly describe the increase in special needs assistants in recent years as government decisions which 'overegged the pudding' for these children. The flippancy with which MrMcCarty treated this serious issue, his complete lack of understanding of special education provision and his apparent ease in stepping outside his boundries of competency i.e. economics and giving the nation advice as to how special education needs provision should be organised were red flags
regarding his competency to make recommendations in relation to these children.

Many false arguments are made by the department of education in support of these cuts. One argument frequently made by the department of education in support of the recent special education cuts is that mainstreaming children with special needs is in line with international best practice. While international best practice supports the mainstreaming of children with special needs when it is in their best interests to do so, most international standards would also require that children with special needs would have their individual needs assessed and met . Something which is currently not a legal entitlement of children in Ireland.

Another argument in favour of increasing class size is that we all attended school in the good ole days when class sizers were larger and didn't we do fine. The hidden cost of those 'good ole days' were the many children with special needs whose needs were not met and who suffered life long consequences as a result.

To take an economic view, the longterm economic cost to the state will also increase when we do not ameriorate the special needs of these children. The gap between them and their peers widens and greater intervention is required in the long term to address that gap. Even if one uses only an economic perspective these proposed cuts are penny wise and pound foolish.

Every parent knows that the greatest resource available to their child in school is the ommittment, vision and expertise of their childs educators, but a finite amount of resources is not an elasticband which can be stretched without snapping.Parents and educators have long experience in making the most of sparse resources but it would take Houdini to recreate resources where they have been removed.

Children with assessed special needs make valued and positive contributions to their family, school and community every single day, however they need the protection of the constitution now more than ever if they are to access an 'appropriate education' which our constitution....their constitution, sets out to protect. The wisdom of our nations founding fathers will hopefully be an inspiration to the politicians of today.

Children with assessed special education needs are not looking for rugby pitches, swimming pools , gyms or computer rooms or any of the 'pudding' available to so many children in the Irish education system.The assessed requirements of children with special education needs are not the jam or pudding, they are the bread and butter of their educational experience.