Kids will suffer because of medical card cuts

by Pat Flanagan from the Irish Mirrior:
Head of Down Syndrome Ireland backs our campaign to change law for children's health

The law must be changed or all children with Down Syndrome will not receive a medical card, it was claimed on Wednesday.
The head of Down Syndrome Ireland said the practice of awarding cards on the basis of a child’s financial situation – not the state of their health – must stop.
The Irish Mirror is campaigning to have the 1970 Act changed to allow all children with the condition to receive a medical card.
At present, even youngsters who are severely ill cannot get a card if their parents are earning as little as €5 over the cut-off limit.
Down Syndrome Ireland boss Pat Clarke said HSE officials, who have asked if children with the condition have got better, are totally out of touch.
He insisted: “The law needs to be changed and we’ve been asking for this for some time.
“Many, many years ago there were the county medical officer in each region who looked at each individual case and would know these individual people and be able to assess the medical condition all these children with Down Syndrome had.

Aimee lends her Punky voice to hit show

by Sam Griffin from Herald.ie:

AN Irish television programme about a girl with Down Syndrome is taking the world by storm with 10 countries now set to air the cartoon.

And the star of Punky is Aimee Richardson (31) who lends her voice to the show's main character and who herself has Down Syndrome.
Aimee says she has a connection with her character and feels a bit like Punky herself.

In Ireland, half of children with Down syndrome 'at risk of losing vital aid'

from Irish Independent:

Up to half of the country’s children with Down’s syndrome are at risk of losing their discretionary medical cards, a leading advocacy group has revealed.

Down Syndrome Ireland says that hundreds of children with the disability have already lost the medical benefit.
It also believes that children with Down’s syndrome will not receive discretionary medical cards – based on health needs rather than income - at birth.
Around 2,000 children under the age of 16 are estimated to have the condition in Ireland.
While the HSE hasn’t furnished figures on the number of children with Down’s syndrome who have lost their card, it says those who are not entitled to the cards are having them withdrawn.
Pat Clarke, CEO of Down Syndrome Ireland said “we would feel that 1,000 children are at risk”.
“This adds an additional burden to parents for both doctors fees and prescriptions.”
“Where there are people with Down Syndrome, there are a lot of attendant costs that aren’t taken into account like babysitting services or the fact that one parent may have to give up their job.”
“We have received correspondence from almost 150 parents who are worried about this, and we’re trying to advise them on what they can do,” he said.
Parents can appeal the decision, Mr Clarke said, and the advocacy group is now advising them on how to do so.
At the Dail’s Public Accounts Committee on November 14, HSE officials could not provide answers to questions on how many of the 6,324 discretionary medical cards removed following review, were from children with Down’s syndrome.

English and Welsh women are eight times more likely to abort a baby with Down syndrome than Irish women

By Dr. Peter Saunders from National Right to Life News Today:
Editor’s note. Dr. Saunders is a former general surgeon and is CEO of Christian Medical Fellowship, a UK-based organization with 4,500 UK doctors and 1,000 medical students as members.
If you have Down’s syndrome and your mother lives in Ireland then your chances of making it to birth are considerably greater than if you have the misfortune to be conceived in England or Wales.
English and Welsh women are 7.6 times more likely than Irish women to have an abortion for a baby with Down’s Syndrome, 6 times more likely to have an abortion for Edward’s syndrome and 4 times more likely to have one for Patau’s syndrome.
Furthermore the Irish birth rate for Down’s syndrome babies is about twice that for England and Wales.
The way these figures are derived is explained below. The calculations are not simple as many babies with all these conditions are not diagnosed until after birth.
Some of the most common congenital abnormalities accounting for abortions in England and Wales are ‘trisomies’, in which there are three copies of one particular chromosome rather than two.
The most common trisomies are Down’s syndrome (trisomy 21), Edwards’ syndrome (18) and Patau syndrome (13). People with DS now have an average life expectancy of between 50 and 60 but those with Edwards’ syndrome (ES) and Patau syndrome (PS) will all die in early childhood.
The National Down Syndrome Cytogenetic Register (NDSCR) was set up on January 1, 1989 and holds anonymous data from all clinical cytogenetic laboratories in England and Wales of cases of DS, ES and PS diagnosed before or after birth.

Amiee Richardson stars as Punky in a new cartoon

From Irish Independent:

RTÉjr has just made history by broadcasting the world's first ever animated cartoon featuring a lead character with a disability.

Punky, produced by Monster Animation, tells the everyday adventures of a cute six-year-old girl who has Down Syndrome. The series is set to go global; negotiations with TV networks in the UK, Australia and Sweden are at an advanced stage, and it's hoped Punky will attract more buyers at the international TV market in Cannes next October.

The character of Punky is voiced by Aimée Richardson, a 29-year-old Dublin woman who has Down Syndrome.

Aimée is my cousin, six years my junior, and famous in our family long before her voiceover début with RTÉ. At the series launch in the Mansion House last week, Aimée said she hoped children of all ages might learn something from Punky about what it's like to have a disability and that it's not, as she put it, "all bad".

My cousin is one of about 5,000 people in Ireland with Down Syndrome, the genetic disorder that is a result of a child being born with an extra chromosome. It affects physical and mental development, and can be linked to a range of conditions including slow learning, congenital heart defects, digestive problems, weak muscle tone, eyesight and hearing difficulties.

Aimée was born with a hole in her heart, and had to undergo major valve surgery at the age of two. Before the operation, her parents were warned that she had a 50/50 chance of survival. She made it.
She also made it through full-time education in primary and secondary mainstream schools, becoming one of the first special-needs students in the country to sit her Leaving Cert Applied exams. School was tough. At home, Aimée was bathed in love and encouragement, her musical talent was nurtured, and she blossomed into a bright, affectionate child and young adult.

The outside world is not so kind. Children are painfully aware of being left out, and Aimée felt it keenly when she didn't get the calls and texts from the other kids to come and hang out at weekends or in the evenings after school.

Children were friendly and polite, but distant. She was frozen out. But what was remarkable was that Aimée was never resentful. She understood that they were teenagers too.

Aimée has no shortage of friends now, but she told me recently that looking back on her school days, it was "a bit of a challenge" for her to mix with people in a mainstream school who didn't have disabilities. But she added, "I can imagine it was a challenge for them as well, trying to mix with someone with a disability."
She persevered. In her twenties, Aimée completed a FETAC Level 5 course in childcare and worked with children over a two-year period at a pre-school centre.

A clear and considered speaker, she became an advocate for Down Syndrome Ireland and a member of their National Advisory Committee, helping to develop anti-bullying campaigns and generate political debate on disability issues before the recent election.

Aimée is currently recording an Irish-language version of Punky, and is practising her Irish at every opportunity, silently reading the bilingual signs on the DART and the Luas whenever she travels.

And yet, as she told me, discrimination can happen anywhere, at any time. Strangers sometimes stare, or avoid her gaze. "I certainly don't like being stared at," she said. "In the awareness campaigns with Down Syndrome Ireland, we're trying to put across the idea that, okay, we have a disability, but we're not stupid."
Aimée is the first person with special needs to be represented on the European Disability Forum, and has at least a dozen TV, radio and newspaper interviews under her belt. She made an off-the-cuff speech at the Mansion House last week which had her audience smiling through their tears.

Thanking her parents and colleagues, she described how she hopes the character will grow up so that people can understand more about having a disability when you're older.

Punky is being widely hailed as a role model for children with special needs. That she has Down Syndrome is mentioned in the opening credits, but thereafter she is just a fun-loving little girl who lives with her mum, her granny, her big brother, and makes sense of the world in her own way.

Punky is a character. Aimée Richardson is a real-life ambassador, but it is her humanity, not her disability, which make her special.

Her gentle ways have taught me a lot about acceptance, love, bravery and forgiveness. Punky is just as certain to win a worldwide army of fans, not for her cute haircut or her sense of mischief, but for her lion-hearted humanity in which we all claim a share, regardless of age or ability.