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Tue07292014

Last updateFri, 10 Jan 2014 9pm

Back You are here: Home Entitlements Entitlements News

Our children are citizens of the State, but they’re being left in limbo

Hundreds of families of young people with intellectual disabilities face cuts to day services

Damien Douglas’s twin girls, Una and Ailis, can light up a room with their smiles.

“They are so happy,” he says, “They love music and sensory stimulation, and are very social in their own way. A lot of energy goes into looking after them.”

Both are intellectually disabled and have complex needs. School has played a crucial role in helping them to fulfil their potential. But now that his daughters have reached 18, uncertainty prevails.

Their constitutional right to an education has ceased and the State is under no obligation to provide them with any services. Yet they are the same girls, with the same complex needs.

The girls have a chromosomal abnormality known as Wolf-Hirschhorn Syndrome.

“As a result of this they can’t do anything for themselves,” says Douglas. “They can’t eat or drink, are incontinent, can’t walk or talk, can’t look after their own needs in any way, yet they have the loveliest of smiles and laughs.”

The syndrome also leads to other complications. They have epilepsy and multiple joint problems and require specialised seating. They have to be lifted any time their positioning requires changing.

“Day services are very important to us and the girls themselves,” says Douglas. “They would help share that burden, and, as you can imagine, having two children with such complex and profound needs puts a lot of pressure on us as a family.”

Hundreds of families of young people with intellectual disabilities face cuts to day services

Douglas isn’t the only parent wondering what the future holds for his children.

Funding cuts mean many of the 880 intellectually disabled teenagers who are reaching adulthood will not have the kind of day service which meets their assessed needs.

Day services have traditionally provided activities or occupation over a five-day period.


Reduction in services
Latest national figures show that no services have been identified for about 60 young people, but hundreds more face a reduction in this service from five days to two or three days.

Douglas took early retirement. He didn’t want to leave the burden of full-time care to his wife. “I’ve a fairly good pension, but I felt I had to give up the job I love,” he said.

“Without a day service, we are prisoners in our own homes. You can’t take the kids for a walk on your own. It needs two of you to manage . . . Those kinds of sensory experiences – feeling wind in their faces – mean an awful lot to them.”

For 14 years, Una and Ailis spent five days a week at Stewarts, a service provider in west Dublin for children with disabilities. Douglas is at pains to point out that Stewarts has always been supportive of his children’s needs.

He has been offered a limited day service for his daughters, but it is nowhere near what they require.

“We understand that, as of now, they may be in a position to offer us a five-day service by the end of October, but it’s dependent on a number of things happening,” he said.

“We shouldn’t have to do this – we shouldn’t have to bare our souls and go public like this. Our children are citizens of this State. They are entitled to have their rights respected. These are children being left in limbo, through no fault of their own.”

The Irish Times

10 Things People With Disabilities Can Do Right Now To Be Happier

People have always been more interested in the secret to eternal life, not the secret to true happiness. That’s because people already think they know what would make them happy – a perfect body, perfect health, money, sex, adventure, fame, success; all the usual subjects. And people with disabilities often choose these usual subjects too.

But for people who’ve won the lottery and ended up with a crazy life a few years later know, getting what you want isn’t always the secret to happiness. Sometimes the secret isn’t something you can buy or achieve with good looks, but something from within that can change, helping you truly align yourself with the road to happiness.

Read on for 10 ways people with disabilities can start getting happier today.

1) No more regrets.

A lot of us have become disabled through an accident, accidents that in many cases could’ve been avoided. Living day in and day out with regret however over such big life moments is never a good thing because simply put – you can never go back and get a do-over, and there’s no use wasting time thinking about what can’t be undone.

Instead, coming to peace with how your injury occurred and not retaining any anger towards anyone who may have caused is the wise choice, even if it seems incredibly hard. Letting go of regrets can restore true happiness to your life and heal the soul in profound ways.

2) Be as independent as you can.

Relying on others may be unavoidable, but becoming too dependent, even letting yourself become a wee bit lazy and let others do things for you that you can, can siphon away your happiness very quick. Try everything, from making an entire recipe from start to end without asking for any help to getting your license. Always remember that doing things on your own can make you immensely happy.

3) Embrace your individuality.

When you’re disabled, it can be stressful, even downright embarrassing to always be the odd one out. “Fitting in,” after all, is a base human need. But looking at your uniqueness differently, and loving every bit of it (and really believing it) can make you blissfully happy.

I love that I’m not everyone else because it makes me more memorable. Life is too short to be vanilla; to be like everyone else and doing the same old thing. Disability can definitely make life harder, but it can also make you a unique survivor worth noticing.

4) Connect with your sexual self.

Denying your sexual self can be one of the worst things you can do if you have a disability. As human beings, having sexual experiences are key to keep our happiness levels afloat, but I know this can be hard for many. Finding a partner that can look past your disability is not always easy. And for many, this can leave us involuntarily celibate for years.

Try online dating if you haven’t yet, and if you’re still having no luck, masturbation can be great in the interim, especially if paired with quality pornography. No matter what though – do not forget your sexual self. Primp, shave, powder, or do whatever you do to get your “I am sexy” feeling on.

SEE ALSO: Why Do People With Disabilities Expect To Be Treated Differently When Facing Criminal Charges?

5) Make friends you can relate to.

We all need people in our lives we can relate to, someone who really knows our daily struggles because they live them too. High school girls like to hang with other high school girls for example, and I like to have at least one female friend who uses a wheelchair. Being able to vent with someone who really knows your struggles is better than any therapist session by far.

6) Only surround yourself with positive people.

While this isn’t possible every moment of the day, only surrounding yourself with people who support and genuinely like you is a big thing you can do in the way of finding true happiness. We are all guilty of staying friends with people who bring us down or are negative. It’s not easy cutting people out of your life, especially if you’re afraid of being lonely, but negative people can suck out your happiness worse than a hungry vampire.
Instead, find people who are happy for you when you succeed, who wish the best for you at all times, who are happy in their own lives too. You can never go wrong with your own personal cheer team.

7) Find a skill you’re really good at (and make money doing it).

Everyone needs to be good at something, to be known or notorious for a certain skill. Whether it’s poker, applying makeup, designing, writing, cooking or financial planning, the key is finding one thing you can do that makes you proud. And better than that (if possible), a skill that helps you make extra money. Being able to support yourself, or just being able to bring in some income by doing something you love is a true life pleasure. It’s also a great way to beef up your self-esteem, if needed.

8) Help others.

It can be too easy to get caught up in your life of limitations when you have a disability. Using your life to help others however, no longer focusing on what you need, can redirect your mental stream in a positive way. Volunteering, mentoring, helping at a kid’s with disabilities camp, visiting old people in a nursing home; doing anything outside of yourself can cause an explosion of happiness in your world.Being happy at all times may not be the true purpose of life, but wallowing in unhappiness certainly isn’t life’s purpose either. Before you give up on finding happiness entirely, try a few of the tips above. You’ll be surprised at what layers of happiness are yet to be uncovered.

9) Church/Live Music/

For people of faith, this is huge. With faith, and a dogma if you’re lucky, you can have a handbook to happiness all ready to go. Faith gives your life purpose and the answer to eternal life; both are true-blue happy inducers. If you’re willing, try reconnecting with your childhood faith or a faith you’ve always been interested in, and then see how it feels. It may give you more comfort than you’d think.

And for non-religious people, a great alternative is live music. The energy that emanates from a live performance can make you feel like you’ve had the most amazing sex of your life. The louder and more feverish the better. Whatever your music genre poison is, a monthly episode at the minimum of soaking in the presence of live music may be just the Prozac you were looking for. And remember – the smaller venues, the better (they typically let you get closer to the stage if you can’t walk).

10) Start exercising.

They say getting your body moving and blood circulating can get your endorphins flowing, those lovely happy-happy hormones, and they’re right. But when you have a disability getting in that exercise takes a bit more creativity and let’s face it – many of us get tired quicker. Using the Wii, arm weights, handcycling or even chair-aerobics can be great ways to get in a cardio workout, which if you want to really see if exercising works, you should be doing at least four times a week.

And whatever you do, don’t start doing an adapted sport just because your therapist recommends it. If you didn’t like basketball before your injury and now you use a wheelchair, chances are you still won’t like it. Find a physical activity you love doing, and you’re on your way to finding that happiness and clear of mind feeling you can only get from exercising.

http://www.huffingtonpost.com

 

Elderly with diabetes 50% likelier to have disability

diabetesOlder adults with diabetes are between 50 and 80 percent likelier to have a disability compared to people without the disease, according to a review published on Wednesday.

Researchers at the Baker IDI Heart and Diabetes Institute in Melbourne, Australia, trawled through more than 3,200 previously published studies that explored the link between diabetes and disability.

They narrowed the catch down to 26 studies that compared like with like.

Most of the people in these studies were aged over 65 -- an age category in which Type-2 diabetes, also called adult onset diabetes, predominates.

Disability was defined as either crimped mobility or an impaired ability to perform daily activities such as bathing, eating, using the phone, shopping and using transport.

Lead epidemiologist Anna Peeters said the association between diabetes and disability was long known but until now poorly identified.

The causes remain mysterious, she said.

"It's possible that the high blood glucose concentrations experienced by people with diabetes might lead to chronic muscle inflammation, eventually resulting in physical disability, and some studies have shown that diabetes is associated with rapid and worsening muscle wasting," she said.

"The complications associated with diabetes, such as heart disease, stroke, and kidney disease, can all result in disability.

"As the world's population ages, and diabetes becomes more common, it seems clear that we will see an increased need for disability-related health resources."

The paper appears in the journal The Lancet Diabetes and Endocrinology.

According to the UN's World Health Organisation (WHO), 347 million people around the world have diabetes, a disease in which the body fails to break down glucose in the blood through the hormone insulin.

Ninety percent of these have the Type 2 form of the disease, which typically shows up in adulthood or late childhood, driven by obesity and a sedentary lifestyle.

Children with special needs much less likely to enjoy school

THOUSANDS of young children with special needs are much less likely to enjoy school than their classmates, a new report has found.

Primary pupils with learning difficulties, a physical disability, or conditions such as Attention Deficit Hyperactivity Disorder (ADHD) are up to twice as likely to dislike school as other pupils.

Their more negative attitudes are linked both to poorer engagement with school and homework and their relationships with teachers and other children.

The divide shows up in a new report from the Economic and Social Research Institute (ESRI), using data from the Growing Up in Ireland study of 8,578 nine-year-olds.

According to teachers surveyed in the study, 14pc of the pupils had a special need, which, across the entire primary system, would represent about 80,000 children.

The ESRI research, the first of its kind, focused on pupils in mainstream schools, now attended by greater numbers of children with special needs as part of the moves to make education more inclusive.

But the study, by Selina McCoy and Joanne Banks, raises concerns about the integration of children with special needs and the barriers they may face, even with the supports that are provided in schools.

Overall, the research shows that children with and without special needs are broadly positive about school, but the findings highlight differences between the two groups.

According to the study, 7pc of nine-year-olds reported that they "never like school", compared with almost 12pc of children identified with some type of special need. Out of a total of about 80,000 primary pupils with special needs, it could mean about 10,000 are not happy at school.

Experiences varied depending on the type of need or disability, and a dislike of school was highest among those with learning difficulties (13pc), an emotional or behavioural disorder (14pc) and those with multiple needs (13pc).

DISENGAGED

The most disengaged are boys with special needs and children with special needs from semi-skilled and unskilled social class backgrounds. Researchers say the more negative attitudes are closely associated with low levels of academic engagement, in areas such as reading, maths and homework, and poorer relations with teachers and other pupils.

The study concludes that: "Inclusion cannot simply be a changed in location from special to mainstream schools, but something which involves a broader examination of the current curriculum, methods of teaching and school climate."

The Department of Education said the National Council for Special Education had recently commissioned research on the Growing Up in Ireland data with a view to providing a better understanding of how children with special educational needs are faring at school.

Irish Independent

How Do We Teach Children About the 'Ability' in 'Disability?'

In order to embrace the ways in which others are different we have to realize the ways in which we are also the same.

When it comes to teaching our children about kids with disabilities, the notions of "connectedness" and "sameness" are essential and something we must foster as a society.

Through school, extra-curricular activities and online interaction, kids today are incredibly connected to one another. So improving the quality of life for children with disabilities and their families reaches far beyond providing the most up-to-date therapies and learning strategies so they may achieve their individual potential.

It includes working to ensure typical kids, without these challenges, grow up with the understanding, empathy and patience needed to create a truly integrated society; one in which they see kids with disabilities just as much a part of their network of peers.

They are not other. They are the same -- just with challenges.

How can we achieve that?

At the Zareinu Educational Centre, we believe that begins with creating opportunities for kids to experience first hand what life is like for their disabled peers.

Through interactive and hands-on learning opportunities, we can expose children to the specific challenges in ways that are still fun but very personal and meaningful.

We have created a "sensitization pavilio"n at our annual Moveathon Festival. It is here, using stuffed animals to depict the range of disabilities children regularly face at the Zareinu Educational Centre, that kids can experience first-hand a day in the life of their peers with special needs. They each receive a physical restriction to mirror the disability assigned to their stuffed animal.

For example:

    Cerebral Palsy: Compromised use of arms or legs by tying them together and adding weights to increase difficulty in use.
    Down syndrome: Compromised balance by attaching pool noodles to their legs and weights on their arms.
    ADHD: Decreased comfort and concentration by placing popcorn kernels in shoes and rough velcro inside their shirts.
    Vision Impairment: Limited sight through adapted glasses.


In half-hour intervals, they participate in classes, snack time, therapy and play-dates in a fun, interactive setting led by a range of professional therapists. All with this limited use in function, in order to experience a day in the life for a child with special needs.

Music class allows them to see all kids enjoy music and can participate in some capacity.

Physiotherapy class allows them to see the time and effort it takes to build skills often taken for granted and that children with special needs can do many of the same activities they can, but adapted materials or support is needed. Sometimes, even the simplest of activities can be difficult and frustrating.

In the classroom they learn about different ways information can be taught and how some people speak through technology or use pictures or actions -- but that anything is possible with the right support.

For snack time, they discover that different disabilities may impact experiences of food and eating and that certain tools might help kids eat more independently.

Through play date activities they learn that kids with special needs also like to play and enjoy the same toys.

The lessons learned in these fun activities are meant to stay with the kids -- and hopefully, when they go back to their programs, schools or camps they will give someone different than themselves a little more time, an extra hand or a smile they would not have before.

It's an important start for them to start seeing the abilities in kids with disabilities and to understand that even with notable differences, there are ways in which all kids are the same.

Lindsey Athias is a Senior Behaviour Therapist at the Zareinu Educational Centre in Toronto. The Moveathon Festival is Sunday, June 9 at Downsview Park in Toronto.

http://www.huffingtonpost.ca

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