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Fri12192014

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

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

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.

Back Pain Is No1 Cause of Disability Worldwide

Back PainGlobal Burden of Disease 2010 highlights the pressing need to prevent, treat spinal and musculoskeletal disorders.
A series of studies emerging from the Global Burden of Disease 2010 Project, a massive collaboration between the World Health Organization, the Institute for Health Metrics and Evaluation (the coordinating center), the University of Queensland School of Population Health, Harvard School of Public Health, Johns Hopkins Bloomberg School of Public Health, and the University of Tokyo, Imperial College London, clarifies the worldwide health burden of musculoskeletal conditions, particularly back and neck pain, in crystal-clear fashion, with low back pain identified as the number-one cause of disability worldwide and neck pain the number-four cause. Overall, musculoskeletal conditions represent the second leading cause of global disability.

Findings emphasize the shift in global health that has resulted from disability making an increasingly larger footprint on the burden of disease compared to a mere 20-30 years ago. In addition, while more people are living longer, the flip side is that they do so with an increasing risk of living with the burden of pain, disability and disease compared to generations past.

Dr. Scott Haldeman, who chaired the 2000-2010 Bone and Joint Decade Task Force on Neck Pain and Its Associated Disorders, and is currently president and CEO of World Spine Care, provided DC with an analysis of the Global Burden of Disease 2010 findings, highlighted as follows:

    Musculoskeletal conditions such as low back pain, neck pain and arthritis affect more than 1.7 billion people worldwide and have a greater impact on the health of the world population (death and disability) than HIV/AIDS, tropical diseases including malaria, the forces of war and nature, and all neurological conditions combined.
    When considering death and disability in the health equation, musculoskeletal disorders cause 21.3 percent of all years lived with disability (YLDs), second only to mental and behavioral disorders, which account for 22.7 percent of YLDs.
    Musculoskeletal conditions represent the sixth leading cause of death and disability, with only cardiovascular and circulatory diseases, neonatal diseases, neoplasms, and mental and behavorial disorders accounting for more death and disability worldwide.
    Low back pain is the most dominant musculoskeletal condition, accounting for nearly one-half of all musculoskeletal YLDs. Neck pain accounts for one-fifth of musculoskeletal YLDs.
    Low back pain is the sixth most important contributor to the global disease burden (death and disability), and has a greater impact on global health than malaria, preterm birth complications, COPD, tuberculosis, diabetes or lung cancer.
    When combined with neck pain (21st most important contributor to the global disease burden – death and disability), painful spinal disorders are second only to ischemic heart disease in terms of their impact on the global burden of disease. Spinal disorders have a greater impact than HIV/AIDS, malaria, lower respiratory infections, stroke, breast and lung cancer combined, Alzheimer’s disease, diabetes, depression or traffic injuries.
    Current estimates suggest that 632.045 million people worldwide suffer from low back pain and 332.049 million people worldwide suffer from neck pain.

"The Global Burden of Disease Study provides indisputable evidence that musculoskeletal conditions are an enormous and emerging problem in all parts of the world and need to be given the same priority for policy and resources as other major conditions like cancer, mental health and cardiovascular disease," said Dr. Haldeman.

The seven studies from Global Burden of Disease 2010, as well as accompanying commentaries, appear in The Lancet. To review the studies and all relevant material, click here.

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