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Extraordinary Lives

Saturday, April 9th, 2011

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Extraordinary Lives, a book was launched on Wed 23rd March to mark the 50th anniversary of the Irish Wheelchair Association (IWA) whose 20,000 members, staff and volunteers are committed to improving the lives of people with physical disabilities throughout Ireland.

The book charts a changing society, from a time when most people with special needs lived behind the closed doors of institutions to enjoying full, active and independent lives in communities today.

It also celebrates the achievements of individual IWA members through the decades: people like Martin Naughton, a champion of the independent-living movement who was sent from his native Spiddal as a child to be reared in a Dublin institution, Paddy and Micheál Saunders, driving instructors with the IWA, Anne Ebbs, a founder of the Paralympic Council of Ireland, Yvonne Fahy, who became disabled following a car accident at the age of 24 and many others.

Extraordinary Lives costs €24.99, is available from Easons stores nationwide and directly from the association at www.iwa.it/book. All proceeds go to the Irish Wheelchair Association.

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Overcoming Learning Difficulties- Yes we can!

Sunday, April 3rd, 2011

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March was National Developmental Disabilities Awareness Month in America.

American society has come a long, long way in its treatment of people with developmental disabilities, yet when some parents hear that type of diagnosis, their heart might fall. They might hear ignorance from uninformed people that could make them despair. But there a so very many people with developmental disabilities who have gone on in life to become extremely well-recognized, very accomplished, well-respected and famous. This is part one of a series of people who you will recognize, all of which were diagnosed with varying types of developmental disabilities.

New York State OPWDD explained, “Developmental disabilities are a variety of conditions that become apparent during childhood and cause mental or physical limitation. These conditions include autism, cerebral palsy, epilepsy, mental retardation, and other neurological impairments.”

As a parent, when your child is labeled with a learning disability, or as the CDC calls an “intellectual disability,” the outlook may “feel” a bit depressing. But take heart! From entertaining us, to making our world a much better place, all of these individuals were characterized as having a “learning disability.”

Famous comedians Jay Leno and Whoopi Goldberg suffer from dyslexia and were labeled as having a learning disability, but it didn’t hold them back in life. Other famous actors and actress with a learning disability include: Suzanne Somers the “dumb blonde” on Three’s Company, and Cher who became a successful singer, actress and entertainer. Rocky star Sylvestor Stallone who is a multi-millionaire and famous actor who didn’t give up after being labeled as having a learning disability. The Bionic Woman, Lindsay Wagner won critical acclaim for her a science-fiction TV series and also won Emmy, 1976-1978, as Best Actress. Famous actor, Golden Globe and Academy Award winner Tom Cruise had a reading disability – his learning disability didn’t hold him back from fame or fortune.

Other people who became wildly famous despite having a learning disability include:

  • Walt Disney the famous cartoonist, winner of 29 Oscars, creator of Mickey Mouse, and entrepreneur who opened Disneyland in 1955.
  • Albert Einstein who is considered one of the greatest scientists, and minds, of all time.
  • The 34th President of the United States, Dwight D. Eisenhower had a learning disability.
  • You know Ford vehicles? Well Henry Ford had a learning disability but he established Ford Motor Company which helped revolutionize the American automobile industry.
  • Third President of the United States, Thomas Jefferson, who also helped write the Declaration of Independence was said to have many learning disabilities. It certainly didn’t stop him.
  • Bruce Jenner an Olympic Decathlon champion was diagnosed as dyslexic, a learning disability, yet he was a a 1960 Olympic gold medal winner.
  • Basketball legend Erving Magic Johnson had a learning disability in the area of reading, but he still led the Los Angeles Lakers to 5 NBA Championships, picked up three League MVP’s and three Finals MVP’s.
  • Despite a learning disability, John F. Kennedy, 35th President of the United States, was the youngest man ever to be elected as President.
  • Robert Kennedy served as Attorney General, but he had a learning disability.
  • Olympic diver Greg Louganis had dyslexia, but he is considered one of the world’s greatest divers.
  • The scientist who made major contributions to medicine and chemistry, Louis Pasteur, was said to have a learning disability.
  • Famous American Army General George Patton, also known as “Old Blood and Guts” had a learning disability. Patton commanded the 3rd Army, World War II, and was leader in the 1944 Battle of the Bulge.
  • Still think a learning disability can affect if people can be good with money and finances? It didn’t stop Charles Schwab the founder of Charles Schwab Corporation Brokerage Firm.
  • Nobel Prize winner for Literature in 1925, George Bernard Shaw had a learning disability. Yet he was one of the most famous writers of the 1900s, having written 50 plays.
  • The 1st President of the United States, George Washington, is believed to have had learning disabilities that kept him from being able to spell and affected his grammar usage, yet he became America’s first president!
  • Both brothers, Wilbur and Orville Wright had learning disabilities. Yet the Wright Brothers invented and built the first successful airplane. Then they made the world’s first flight near Kitty Hawk.

There are hundreds of famous people who could be on this list. Next week, we’ll look at many more people who the world would be much worse off had they “quit” because they had a developmental disability like ADHD, deafness, epilepsy, dyslexia, or blindness.

Image Credit: foxspain

Author: Tessa

Taken from www.ncpad.org

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If you think that is abuse ……

Tuesday, March 29th, 2011

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A CHILD not read to when going to bed at night was an abused child, Minister for Education Ruairí Quinn told the Dáil.

“If a home does not cherish literacy, it is a form of abuse,” he said.

Mr Quinn said literacy started in the home. “By the time a four-year-old arrives in junior infants, outcomes in literacy have already been significantly determined by the commitment of parents, no matter what class or socio-economic group,” he added.

The Minister said he had raised concerns in the past about the State’s “wonderful” education system not delivering. He added that party colleague Aodhán Ó Ríordáin, a primary school principal in Dublin’s inner city, was the first to highlight the need for a right-to-read programme.

“I will be looking at that not to scapegoat teachers or schools, because we are all failing, as parents, society and families, and we must find a way collectively to deal with the issue,”said Mr Quinn.

Mr Quinn said a middle-class child from a committed family arrived in school at four years of age with a vocabulary that was twice that of a child from a disadvantaged family.

He intended, he said, to devolve back to school principals more autonomy and independence to do what they considered to be best.

“It is wrong that we have 3,200 primary schools, stretching from the Aran Islands to the inner city of Dublin, or disadvantaged rural areas in Border counties, with a one-size-fits-all curriculum and little discretion for the principal.”

IT IS WRONG THAT RESOURCE HOURS FOR SPECIAL NEEDS CHILDREN IS LIMITED TO 5 HOURS PER WEEK – DISREGARDING THE LEVEL OF DISABILITY THAT A CHILD HAS – AND ALSO BLATANTLY DISREGARDING WHAT TEACHERS AND SCHOOL PRINCIPALS RECOMMEND- THAT IS ABUSE OF THE HIGHEST ORDER- AND IT BREACHES THE EQUAL STATUS ACT. WE AT MY SPECIAL NEEDS HAVE REQUESTED A MEETING WITH MINISTER QUINN TO DISCUSS THIS ISSUE AND TO HOPEFULLY AVOID US AS PARENTS FROM TAKING AN ACTION AGAINST THE STATE FOR ‘ABUSING’ OUR CHILD!!!

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Another First for William Loughnane!

Sunday, March 20th, 2011

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A SPECIAL Olympic gold medallist has become the first person in the country with Down Syndrome to pass his driving test.

William Loughnane (26), from Clooney-Quin, Co Clare, got rid of his L plates after recently passing the theory and driving test.

His latest achievement has been hailed by Pat Clarke, the president of Down Syndrome Ireland.

Mr Clarke said that to the best of his knowledge William was the first person in Ireland with Down Syndrome to hold a full driving licence. “For people with Down Syndrome it shows that if they persevere they will get to where they want to get to,” he added.

William, who works in a Centra shop in Ennis, won two gold medals, three silver and two bronze for gymnastics at the 2003 Special Olympic games in Dublin. Four years later, he claimed six gold and one bronze medal in China.

His father Liam helped him with the principles of driving. “I showed him the ropes. He only started in November,” Liam said.

Irish Independent

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RES -Q Wedge

Sunday, March 20th, 2011

Hi, My name is Orla Walshe. Myself and my husband just set up a company importing the RES-Q Wedge. We initally bought one for our daughter who suffers from colic, reflux and constipation and had such success with it we contacted the supplier in the US and are now their European agents. RES-Q Wedge was developmentally designed by a pediatric occupational therapist, physician, and dietician to meet the needs of premature and term infants. It is the first reversible and orthopedically designed reflux wedge on the market for infants from birth to twelve months of age. Both sides of the wedge are designed to allow babies with gastro-esophageal reflux disease, sleep disturbances, ear and sinus infections as well as pulmonary problems and orthopaedic issues to rest comfortably in a semi-upright position. One side of the wedge has a built-in ‘nest’ which provides the baby with boundaries and containment. It also helps to promote good head moulding for infants while they are sleeping. This side of the wedge is constructed at a 35-45 degree angle. Research has proven that resting at this angle helps to prevent stomach acid travelling back up a baby’s oeosphagus. The reverse side of the wedge is designed like a mother’s chest and has a curvilinear arch where a baby rests in a tummy position or if premature, swaddled in a side-lying position. This side of the wedge is constructed at a 30 degree angle. Our second product is Baby’s Essential Daily Log Book. I wrote this book to help log my baby’s feeding, nappies and medication. Baby’s Essential Daily Log Book keeps track of their baby’s growth,development,feeding,nappies,medications and appointments during the first 8 sleep deprived weeks. Simple to use and easy to carry around. Great to bring to doctors appoitments.

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Rare Diseases !

Sunday, March 13th, 2011

Fourth International Rare Disease Day – “Rare but Equal” 

www.rarediseaseday.org 

February 28 th, 2011, was Rare Disease Day. All over the world, rare disease patient organizations and their partners are joining forces to create awareness of rare diseases and the millions of people affected by them.  
Rare diseases are life-threatening or chronically debilitating diseases. Due to the low prevalence of each disease, medical experts are rare, knowledge is scarce, care offering inadequate, and research limited. Very few cures exist. While the diseases are rare, collectively they affect more than 60 million people in Europe and the US alone. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research. 

 

To help raise awareness, the international Rare Disease Day campaign was initiated by the European Organisation for Rare Diseases (EURORDIS) in 2008, and since has been annually organized on the last day of February by EURORDIS, in conjunction with 25 rare disease national alliances, together representing over 1,000 patient groups. 
This year’s focus is on health inequalities. “Most rare disease patients spend years wandering through the maze of health systems to find an accurate diagnosis. Many are fighting to obtain life-saving treatments or to be reimbursed by their health authorities. Others are denied access to specialised services and to disability compensation. They have further difficulties finding a job, getting into school, obtaining a loan or accessing life insurance,” says EURORDIS’ Chief Executive Officer Yann Le Cam.  
To further the objective of equal care for rare disease patients, EURORDIS has organized a one-day conference in Brussels in partnership with the European Commission, addressing the issue of health inequalities and discussing mitigating measures. Ms. Antonyia Parvanova, MEP and shadow rapporteur on the new EU Directive on Cross-Border HealthCare and Patient Mobility, will participate in the Conference. The programme will spotlight examples of inequalities, such as the absence of widespread neonatal screening in Romania for phenylketonuria, a rare disease that is systematically screened for in most of Europe; the disparities in life expectancy for cystic fibrosis patients between European countries; the unequal access to new therapeutic approaches for rare cancer patients leading to variations in survival rates across Europe. 

 

Today marks the fourth international Rare Disease Day coordinated by EURORDIS, 
together with rare disease national alliances and patient groups from more than 40 countries worldwide. Awareness-raising activities are being planned across Europe, USA, China, Japan, Colombia, Burkina Faso, Australia, India and many other countries across the globe. 

For more information: 

More information about Rare Disease Day and the events planned in participating countries can be found at  

 

The European Union considers a disease as rare when it affects fewer than 1 in 2,000 citizens. 80% of rare diseases have a genetic origin. 5,000–7,000 rare diseases have been identified to date, affecting 30 million Europeans today

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More Special Needs Cuts!

Sunday, February 27th, 2011

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FURY erupted last night over a decision to deprive children with severe disabilities from getting a second full year of pre-schooling, the Irish Independent has learned.

The move, which will save less than €500,000 a year, will hit families of Down Syndrome children, those with autism and other severe disabilities.

Many had assumed their children could avail of a second year, but now their hopes have been dashed.

Instead, they have been given the option of a full year starting in September, with their children attending Monday to Friday, or splitting the provision over two years.

The INTO last night described the move as a “shocking and mean spirited” decision by the Government, which had promised as far back as 2002 to ensure early education services for children and prioritise children with disabilities.

The highly successful free Early Childhood Care and Education pre-school year began in January 2010. An overwhelming 94pc of eligible children are now participating in the scheme.

About 170 children with severe disabilities were allowed to avail of a second full year starting last September. They were approved on a case by case basis.

But Children’s Minister Barry Andrews‘ office has decided this will not be available to children starting in September this year.

A spokesman for the minister said the 170 children were allowed to enrol in the second year because the first free pre-school year was a “short” one”, having started in January 2010 and finishing in June.

“No child at any stage has ever been approved for two full years,” he told the Irish Independent.

Drastic

But the decision has angered many parents. “As parents, we will not sit on the fence on this. Our children are already facing sweeping reductions in services due to drastic cutbacks,” said Down Syndrome Dublin chairperson Miriam Masterson.

She said the decision could not even be considered a cost-saving measure, when these same people will, in later years, require a lot more help than if they had been given the best start from the outset.

Irish Preschool Play Association chief executive Irene Gunning said the decision was very disappointing as it had not been signalled in advance and parents had an expectation of a second year.

However, Fine Gael last night held out the prospect of reversing the decision. Fine Gael education spokesperson Fergus O’Dowd said the party was committed to spending €20m on a First Step programme to help disadvantaged pre-school children. He said this would include those with severe disabilities.

“A Republic is judged by the manner in which it treats its most vulnerable citizens,” Mr O’Dowd added.

- John Walshe Education Editor

Irish Independent 19th February 2011

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SHOCK! Systemic Dishonesty at St Michael’s House!

Sunday, February 20th, 2011

 

Ballymun

This week  I attended a meeting of the Family and Parent Council of St Michael’s House Northern Region. These meetings are very frustrating to attend as they achieve very very little.Challenging or questioning the status quo at these meetings is overtly frowned upon and dismissed. The fact that the Parent and Family Councils are in place 4 years but cannot identify even one acheivement of note in that period says it all about their usefulness. They are generally used by St Michael’s House itself to spread self promoting propaganda among the parents.

This meeting was no different. We had a presentation from acting Chief Executive  Paul Ledwidge. He retired on 31st December receiving a six figure redundnacy payment and a pension fund that will cost the tax payer many millions of euro to fund. He made much play on the fact that he was acting Chief Executive in a voluntary capacity until a replacement is found and appointed in early March - but failed to say that his annual pension is exceedingly more than twice the average industrial wage -so he can well afford to be there voluntarily. He also says that he would be working in a voluntary capacity 2 days per week for the year 2011 – saying that he didn’t want things to go pear shaped after all his hard work – a huge insult to the current management team.

He gave a presentation lamenting the Government cutbacks and the effect it was having on the Provision of Services at St Michael’s House. During the presentation he proudly announced that one of the efficiencies that had happened was that employees now had to work a full 39 hour week. He stated that over the years it became customary for employees not to work a full week – but still to be paid for it. This outrageous statement was not picked up on by anybody attending. Here we had the Chief Executive of an organisation receiving almost 100 million euro of tax payers money and some of this money was being wasted by paying dishonest employees for a full week’s work when they were not doing a full week’s work.

What a disgrace and an insult to all those who do volunteer work at St Michael’s House that others can get paid for not working. More disgracefully Management were fully aware and allowed this despicable behavior to continue. Is it any wonder that there are cutbacks. When I listened to Paul Ledwidges presentation I was disgusted at the wanton waste and weak management within the organisation that he portrayed and I would have to say that until St Michael’s House becomes more efficient – no further expenditure should be allocated to them.In fact it is time to look at whether the organisation should be restructured and maybe broken up into smaller units.

We can only hope that the New Chief Executive to be appointed will have the necessary skills and ability to properly manage an organisation that  up until now,on the above evidence has been very poorly managed.

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Who Cares for the Carer?

Sunday, February 6th, 2011

Carers suffer more illness and disability, survey shows

Carers protest outside Hammersmith town hall, London, about the closure of a carer centre

Carers protest outside Hammersmith town hall, London, about the closure of a carer centre.

A new study shows that carers’ responsibilities often bring them ill-health. Photograph: Jethro Bradley-Firth for the Guardian

Carers are twice as likely to be suffering long-term illness and disability as the rest of the population, a study reveals today.

The survey, for Carers Scotland, found that 96% of unpaid carers had experienced a negative impact on their health because of their responsibilities, with more than a quarter rating their own health as poor or very poor. More than half had a long-term illness or disability, and two-thirds had experienced a range of physical problems.

The report, Sick, Tired, and Caring (pdf), which is published today, comes amid continuing publicity over the role of carers prompted by the case of Riven Vincent, who asked social services to take her severely disabled daughter Celyn into care because she could no longer cope with the demands of looking after her child.

Carers Scotland said the study had shown the human cost that caring can place upon individuals and is calling for a range of services to be made available to carers, including early intervention by GPs and other professionals, regular health checks, practical training and concessionary rates for sports and leisure services.

Almost half of those questioned for the study suffered from a significant illness, including diabetes, depression, or cancer. More than a third were suffering from arthritis, osteoarthritis or osteoporosis, and a third had high blood pressure. A total of 70% suffered from stress, and 34% suffered from exhaustion. Almost half reported that their conditions had started after they began caring. Of those whose condition predated their caring role, a quarter said it had worsened since they took on the extra responsibilities.

Patrick Begley, director of Carers Scotland, said health and social services relied heavily on the support provided by unpaid carers. In Scotland, there are some 660,000 carers, and Carers Scotland said the economic value of the work they do is around £7.6bn a year in Scotland, and £87bn across the UK as a whole.

“Despite this irreplaceable contribution, this study shows the real human cost that caring can place upon carers – stress, poor health and long-term illness and disability,” said Begley.

“Information and support provided at an early stage is critical. This is often overlooked as carers do not have the time or backup to look after their own needs. This cannot be good for the carer and risks a breakdown of care, with the subsequent need for intervention by health and social care.”

Fiona Thomson, 41, from Irvine in Ayrshire, is the sole carer for her 17-year-old son, Dean, who has ADHD and autism.

“I’ve had major stress. I also suffer from depression and anxiety because of my caring role,” she said. “My health has deteriorated over the years and, unfortunately, they now think I may have lupus as well, which could be to do with the stress of caring for Dean.”

Thomson used to get nine hours of respite care a month, but that was recently cut to six hours after Care Partners, the local charity that has supported her, had their funding cut by North Ayrshire council. Thomson is now spearheading a protest group against further cuts in public money to the charity, which could affect more than 100 families.

Anne*, 41, from central Scotland, cares on her own for her two daughters, aged 20 and 16, who have severe learning difficulties and require 24-hour care. Stress and exhaustion brought her almost to breaking point last year.

“It was at the point where if I didn’t get more help, then something serious was going to happen. It was a really serious cry for help.” Anne’s respite care was increased from the three nights a month she was receiving. Now carers come every week from Friday to Sunday.

“I would say I’m feeling a bit better,” she said. “It has given me a chance to think and focus on different aspects of the girls’ lives now.”

• * Not her real name

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A real set back for Inclusion- Lucan Educate Together – a disgrace!

Sunday, January 30th, 2011

Lucan educate together

A DUBLIN school was entitled to refuse to enrol a boy in a class for children with autism, the High Court has ruled.

Mr Justice Daniel O’Keeffe yesterday upheld a challenge by Lucan Educate Together National School to a Department of Education appeals committee decision allowing an appeal by the child’s parents against the school’s refusal in late 2007 to enrol him in its outreach class for children with autism.

While it was accepted the class had capacity for the child, the school refused enrolment on grounds he did not meet the criterion for enrolment in light of a psychologist’s report stating he had “significant” learning disability and significant developmental delay.

The school’s criterion for enrolment included only a “mild” learning disability and the school said the services available to it could not meet the child’s needs.

The parents appealed under Section 29 of the Education Act and the appeals committee allowed that appeal and directed the child be enrolled in January 2008. The committee found the child met the “main criteria” for enrolment but the school then took judicial review proceedings.

Yesterday, Mr Justice O’Keeffe found in favour of the school.

While it was not unreasonable for the committee to describe autism as the main criterion for enrolment, and there was no issue that there was capacity in the outreach class for the child, other aspects of the committee’s decision were unreasonable and invalid, the judge found.

 

 

DisabiLity

The committee’s conclusion that the child had a mild learning disability was unreasonable, given the facts and evidence in the case, he ruled.

The judge said the report relied on by the committee at the appeal could not be read as establishing the child suffered from a mild learning disability.

The report referred to the child having “adaptive skills” within the “mild range of adaptive functioning” This was a different condition to a learning disability, he said.

Source Evening Herald

We at My Special Needs say Shame on You Lucan Educate Together! The effort you spent ( and the money! ) bringing this case to the high court should have been spent on resources within the school to facilitate the boy’s learning.

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