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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

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.

Aggression A Struggle For 1 In 2 With Autism

More than half of kids and adolescents with autism are physically aggressive and new research suggests that sleep, sensory and other underlying issues may be responsible for the behaviors.

In a study of 1,584 children with autism ages 2 to 17, researchers report this month in the journal Research in Autism Spectrum Disorders that about 53 percent were aggressive.

The report is based on an assessment of children enrolled in the Autism Treatment Network, a nationwide network of care centers for kids with the developmental disorder. Parents were asked whether or not their child intentionally hit or bit others or demonstrated similar types of physical aggression. Then, researchers analyzed other clinical assessments and parent-submitted data on the children to identify trends differentiating those who were aggressive from those who were not.

While the race or gender of a child did not appear to impact their odds of displaying challenging behaviors, the study found that other characteristics did. Specifically, children were most likely to lash out physically if they engaged in self-injury or had sleep or sensory problems.

Younger kids were also more likely to be aggressive than older ones, researchers found, though they said the problem behaviors remained present at an “alarming rate” in the teenage years, with nearly half of adolescents in the study exhibiting aggression.

Other factors including the education level of a child’s caregiver and the presence of gastrointestinal issues, communication and social skills deficits were also linked to the presence of aggression, but to a lesser degree.

“Overall, the results of the current study indicate that aggression is markedly prevalent among children and adolescents with ASD, and that some sets of co-occurring problems may place individuals at risk for aggression,” wrote Micah Mazurek of the University of Missouri and her colleagues in the study. “The results suggest that increased attention should be given to the identification and treatment of sleep problems, self-injury and sensory problems, in particular.”

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Aging Successfully

Successful aging is an experience governed by gender, culture, personality, and health-related factors. For some, successful aging simply means freedom from disability, while for others it is a more comprehensive assessment of life satisfaction. With an aging population, our society needs to evaluate what it means to ‘age successfully’ and how we – as healthcare providers or as families, friends, and neighbors – can help the elderly among us achieve and maintain valuable years near the end of their lives.

Successful aging involves subjective criteria that are difficult to assess with objective measurements. But recently, new studies have been published that attempt to do just that. Measurements and assessments have included self-rated health, participation in activities of daily living, independence, depression, cognition, walking time and distance, number of days spent in bed, strength of extremities, recent hospitalizations, perceived resilience, personality traits, and overall life satisfaction.

Across several studies, high levels of resilience and low levels of depression and physical disability were associated with more successful aging. No cause and effect can be concluded from the studies, but the results support the role of mental health in successful aging. Associations between sociodemographic factors are complex and inconsistent. In a recent gerontology analysis, wisdom was deemed an important factor in successful aging. People considered to be ‘wise’ – generally identified as those with superior judgment, insight, and spirituality – have better mental health and well-being than other people because they tend to participate in meaningful activities.

Perception is reality when it comes to aging successfully: if a person feels she has aged well, then she has. If, on the other hand, she does not believe she has aged successfully, she has not, regardless of objective measurements. Another recent study in Gerontologist concluded that elderly people who self-reported successful aging, despite a high level of physical disability among the population evaluated, used adaptation and coping strategies to align their perception of successful aging with their own experiences.

Still, improved physical and emotional functioning do lead to more successful aging. Not surprisingly, many factors that influence physical and emotional well-being are not confined to life’s golden years, and variables that predict successful aging are apparent long before old age begins. Even young and middle-aged adults can control variables of biopsychosocial health, such as alcohol and tobacco use, marital stability, physical activity, body mass index, stress management, and education, that affect subjective and objective measurements of successful aging.

Understanding personal, cultural, and clinical perceptions of successful aging can lead to identification of interventions that can put healthy, wealthy, and wise years in your life and life in your years.

13% of population have a disability

Central Statistics OfficeAlmost 600,000 people in Ireland — 13% of the population — have a disability, it has emerged.

More women than men have a disability — 305,607 (51.3%) are female and 289,728 (48.7%) male.

The figures are published in the CSO’s Bill of Health — a profile of the health of the Irish population.

Limerick City had the highest rate of disability at 18.2% in Apr 2011, followed by Cork City (17.7%), Waterford (15.3%), and Dublin (14.9%).

Galway was the only major city to have a lower than average incidence of disability at 11.9%. Lowest rates of disability were found in Fingal (10.2%), Meath (10.7%), and Kildare (11.6%).

There were 56,087 disabled people aged 65 and over living alone.

It was revealed that 35,960 of the elderly disabled had limited physical activity because of their condition. Just over 25,000 were women.

Going outside the home was difficult for 22,989 people while 21,844 found it hard to participate in other activities.

Among disabled people aged 15-49, 16.3% had not gone beyond primary-level education, compared with 5% of the general population.

Secondary school was the highest level attained by 22.3% of disabled people, compared to 15% of those without a disability.

There were 162,681 people with a disability in the labour force — a participation rate of 30%, compared to almost 62% of the overall population.

Of the 542,277 people aged 15 and over with a disability, 112,502, or 21%, were at work. This compares with half of the overall population.

There were 51,718 people — just over 1% of the population — who were blind or had a sight-related disability with more males up to the 70-74 age group.

Some 92,060 people (2%) were deaf or had a hearing-related disability, and 244,739 people (5.3%) had a difficulty with basic physical activities.

There were 57,709 people (1.3%) with an intellectual disability and the greatest incidence was among 10-14-year-old boys at almost 4,000 — more than double that of girls at 1,900.

The census showed that 187,112 persons, or 4.1% of the total population, were providing unpaid assistance to other last year.

Of the carers 114,113 (61%) were women and 72,999 (39%) men. Some 4,228 children aged under 15 were providing care — 2.3% of all carers.

Bill of health

CSO Bill of Health highlights:

* Limerick has highest rate of disability at just over 18%;

* 30% of people with a disability are in the labour force;

* There are 187,112 unpaid carers — just over 4% of population;

* Women provide two-thirds of unpaid care;

* More than one in 10 women aged 45-49 provide unpaid care.