Posts Tagged ‘Intellectual Disability’

Read this and weep!

Monday, July 4th, 2011

newreport

For nine years, the only privacy Peter had was a curtain around his bed. He hadn’t wanted to leave home in the first place but had no choice. For nearly a decade he shared a bedroom with three other men, living in an institution for people with intellectual disabilities.

As it turns out, Peter is one of the lucky ones. He eventually moved from that institutional setting and has lived happily for years, with support, in the community. His story, though, is in sharp contrast with so many thousands of others in a newly published report on people with intellectual disabilities living in institutions here.

There are around 3,500 people in 72 of these places around the country. We’ve all seen them, at least from the outside. They’re usually imposing grey buildings, reminiscent of workhouses.

The Report on the Working Group on Congregated Settings, published earlier this week, received remarkably little coverage, given its contents and recommendations.

This dearth of coverage is despite a conclusion that there is a powerful and unassailable case for taking action. The ethical case for moving these people from what must be horrible lives in these institutions is beyond debate.

The report tells the story of the reality of life for these Irish citizens, most of whom have severe or profound intellectual disabilities, and have been in an institutionalised setting for more than 15 years. Many of them have simply been forgotten by society.

The descriptions of some of the conditions are harrowing. There was one place that has 20 older people with severe disabilities, but only has one accessible shower and two wash basins. The logistics are mind boggling. People simply had to wait their turn to be washed and have their teeth cleaned. In another instance, there was a ward with 10 beds, side by side, with minimal space between, and no curtain dividing them. It’s an unimaginable way to have to live.

In another pitiful revelation, we are told that in nearly a third of the units, residents who are incontinent have to be changed in a communal sleeping or day area. Just think about that for a minute, and the absolute indignity of it. Even if you are changing a toddler’s nappy you find somewhere private, not just for the sake of the child, but also those close by who would have to witness and smell.

All of this awfulness is compounded by the fact that one-in-three of these people had no contact with family in the previous six months.

It appears that, for many, their days are spent in awful monotony, with little or nothing to do to pass the time. They don’t even have the most basic therapies or activities. They are cared for mostly by nurses in a environment far closer to an aged hospital than a comfortable home.

Unsurprisingly, staff expressed concern at the conditions under which they had to work, and their inability to respond to the needs of their clients and to treat them with dignity.

Needless to say, it is quite extraordinary that these homes are not yet subject to official inspections. It is truly shameful that this situation regarding institutionalised care was not addressed when we had the resources.

This current manner of caring, and I use the term loosely, is sharply at odds with our stated policies. It is in breach of UN conventions, and also at odds with our stated approach in Irish disability and equality legislation.

The National Disability Strategy, launched in 2004, includes the Government’s commitment to ensure full and equal participation of people with disabilities in all aspects of life in Ireland.

It’s an understatement to say we are behind the curve in this area. It’s remarkable that there is the need to even to state that these people should be supported to live full, inclusive lives at the heart of family community and society. The group raises the interesting notion that neither those who fund or provide services “own” people with disabilities, nor should they exercise control over their lives simply because they use their services.

Going back to Peter. In his case, he was helped to get a job in a pub counting the money from vending machines. “It felt good and people thought of me differently,” explained the Dubliner, who uses a wheelchair that he can’t propel himself and communicates using a board with symbols.

Following that success, he moved into a house in the community where he has lived happily for the past 16 years. He likes to visit the library, put a bet on in the local bookie or go to the church to light a candle. Contact with his family, he says, has greatly improved.

Those still stuck in institutions can only hope that the Government will have the political will to ensure that they should all be closed within seven years — which is what the report has urged. But if you’re lying in a bed in a horrible old building, drugged to the hilt, surrounded by others like you with no privacy, no visitors, no therapies, less than basic washing facilities, and no activities, it’s a long time to wait.

 

Written by Allison O Connor – Irish Independent July 2nd 2011

All it takes is one Person!

Friday, August 13th, 2010

 

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I AM honoured to see every day how Eunice Kennedy Shriver’s work continues to transform the lives of millions of people with intellectual disabilities, and their families.

This week last year the world lost a remarkable woman and a dear friend of Ireland in Eunice.

On the first anniversary of her passing tomorrow, it is fitting to honour her and to celebrate her lasting legacy.

Deeply inspired by the struggle of her own sister Rosemary, she set out 42 years ago with one vision: a world in which people with intellectual disabilities are fully integrated into society.

The Special Olympics has grown from that day to what it is today — a global movement of 3.5 million athletes in over 170 countries in all regions of the world dedicated to promoting respect, acceptance, inclusion and human dignity for people with intellectual disabilities through sport. In Europe/Eurasia, there are 500,000 athletes across 58 countries.

Her passion for the Special Olympics movement she founded is one that happily coincided with her great love for Ireland.

It was here in 2003 that the world games were first held outside the United States. It was a great gift to Ireland and seven years on the effect of those games on the nation is still fresh in our hearts and minds.

Through the common and simple vehicle of sport, Special Olympics is helping to bring about attitudinal change in the way people with intellectual disabilities view themselves and are viewed and treated by others, replacing misunderstanding and fear with respect, acceptance and inclusion.

Communities, sponsors, volunteers, coaches, spectators, journalists and all those who have been embraced by Special Olympics athletes find that the experience opens their eyes and minds and changes their lives forever.

Eunice Kennedy Shriver leaves this profound and lasting legacy on the world. Not only has Special Olympics changed millions of lives but it has a real impact beyond sport, helping shape public policy and effect social change.

I know I speak for everyone at Special Olympics Europe/ Eurasia when I say we are committed to working tirelessly to continue her work and to bring her powerful vision to life; to change the lives of people with intellectual disabilities, using sport as the catalyst for respect, acceptance and inclusion.

This year is an exciting one for Special Olympics. Next month, we will celebrate the 2010 Special Olympics European Games in Warsaw, Poland, and in June 2011 we will celebrate the 2011 Special Olympics World Summer Games in Greece.

Both events will provide strong platforms to raise awareness of our movement and showcase the abilities and spirit of our athletes. Eunice Kennedy Shriver was a frequent visitor to games and competitions in Europe/Eurasia, inspiring us all with her energy, her unfailing commitment and, above all, her enormous love for the athletes.

While the World Summer Games take place every four years and the European/ Regional Games take place every two years, it is important to be aware that Special Olympics happens every day with more than 30,000 competitions taking place year round in communities worldwide.

I believe the world right now is hungry for what we have at Special Olympics.

Everywhere you look, people are hungry for authenticity. There is a crisis in trust everywhere. People are asking: how can I make a difference and feel a part of something bigger?

At Special Olympics we are uniters. Our athlete, family and volunteer stories inspire, entertain, energise, change attitudes and break down barriers to inclusion and friendships.

Corporations sponsor Special Olympics because they share our brand values and our programmes touch so many people so positively.

Funding is always an issue for us and we continually seek new corporate partnerships to support our mission and continue Eunice Kennedy Shriver’s vision.

Last year the European Commission made an unprecedented commitment to Special Olympics Europe/Eurasia by granting €6m .

This much-needed funding allowed us to empower, through sports, more and more people with intellectual disabilities across Europe, while also changing attitudes and creating a more inclusive and accepting world for all of us.

Eunice Kennedy Shriver devoted her life to fighting for the rights of those with intellectual disabilities. She opened her home, she coached and above all, she was a friend. She demonstrated an indomitable spirit in action.

The first ever Eunice Kennedy Shriver Day (EKS Day) will take place on September 25 this year. Hundreds of events will happen around the world, including Ireland, to celebrate her life and impact and to encourage new fans of Special Olympics.

The Shriver family hopes EKS Day will become an annual event across the globe. To quote Tim Shriver, CEO of Special Olympics International and son of Eunice: “I cannot think of a more fitting way to celebrate my mother’s life and legacy than to encourage acts of volunteerism that will teach people to see their peers with intellectual disabilities as classmates, teammates, colleagues, friends and most importantly, as equals. Ultimately, I hope that this day will put us one step closer to the world she envisioned.”

Eunice Kennedy Shriver was an outstanding leader in the worldwide struggle to improve and enhance the lives of people with intellectual disability.

Tomorrow, I ask you to remember this remarkable woman on the first anniversary of her death and embrace the Special Olympics movement she founded so that every person with intellectual disabilities is accepted and included in society without fail.

Mary Davis is managing director of Special Olympics Europe/Eurasia

– Mary Davis

Irish Independent 10th August 2010

Positive Attitudes – it all begins with Positive Attitudes

Sunday, June 27th, 2010

The following research conducted by the Special Olmpics strengthens the resolve of www.myspecialneeds to change attitudes at our conference on 7th October 2010 in Dublin- see tab on home page “Including Samuel” for more information!

positive attitduesimages

Attitude Research

Multinational Study of Attitudes toward Individuals with Intellectual Disabilities

 
Download the Multinational Study of Attitudes toward Individuals with Intellectual Disabilities General Findings report (147K Adobe PDF file)Download Spanish language version (140K Adobe PDF file)

Special Olympics-commissioned study validates the longtime struggle to change attitudes of stigmatization and the importance of inclusion

For decades, many have believed that the doors to inclusion of individuals with intellectual disabilities in mainstream society have been shut tight because of misconceptions, ignorance and fear. Now, those suspicions have scientific validation, according to a groundbreaking study released by Special Olympics.

The results are in on a major international study that, for the first time, documents how the general population across cultures view persons with intellectual disabilities, and how they should fit into society — views which have far-reaching, negative consequences for the more than 170 million individuals with intellectual disabilities worldwide. The study was conducted in 10 countries across the world, with 8,000 persons responding. On Friday, 20 June, in Belfast, Northern Ireland, the Multinational Study of Attitudes toward Individuals with Intellectual Disabilities was presented as part of the 2003 Scientific Symposium, held in association with the 2003 Special Olympics World Summer Games.

 

Our greatest hope is that this study will serve as the catalyst for a real and lasting change in the public’s attitudes toward the inclusion of individuals with intellectual disabilities in every aspect of society in every country on the planet.”
 – Timothy Shriver, Chairman

 Highlights of the Findings

  • 46 percent of those surveyed believe that persons with intellectual disabilities are capable of playing on a team with others with intellectual disabilities; while only 14 percent believe they are capable of playing on a team with players who do not have intellectual disabilities. However, those respondents who had an involvement with Special Olympics believed in more inclusion, and they expected less negative impacts from the inclusion of individuals with intellectual disabilities in all aspects of society.
  • 53 percent believe that the negative attitudes of others in society — their neighbors — also pose a major obstacle towards inclusion in society.
  • 74 percent of those surveyed believe that people with intellectual disabilities are capable of performing a simple task like sustaining a friendship;
  • 67 percent believe that people with intellectual disabilities can wash and dress themselves;
  • But, only 36 percent of the respondents believe that those with intellectual disabilities could perform more complex tasks, such as understanding a news event;
  • And, only 19 percent believe that people with intellectual disabilities could handle an emergency.
  • Additionally, 79 percent of the respondents agree that children with intellectual disabilities should be educated in a segregated setting, either in the home or in special schools, with the remainder believing that they should attend a regular school, either in special classes or inclusive classes.
  • 54 percent believe that the inclusion of people with intellectual disabilities in the workplace increases the risk of accidents.
  • 49 percent of the respondents believe that the best living arrangement for people with intellectual disabilities is in the home; 9 percent believe that institutions are the best; 17 percent believe that group homes are best; and only 25 percent believe that people with intellectual disabilities should live in either a supervised apartment or totally independently.
 
Researchers, family members and Special Olympics athletes came together at the Special Olympics Scientific Symposium in Belfast, Northern Ireland, 19-20 June. An official event at the 2003 Special Olympics World Summer Games, the Symposium featured 50 papers and workshops on a wide variety of subjects under the theme of “Supporting Families.” A highlight of the Symposium was the release of results from the Multinational Study of Attitudes toward Individuals with Intellectual Disabilities. Pictured (left to right) are Dr.Stephen Corbin, D.D.S., M.P.H., Dean, Special Olympics University; Rodney Hankins, Special Olympic New York athlete and International Global Messenger; and Jennifer Norris, Co-investigator, University of Mass., Boston Centre for Social Development and Education. [Photo by Naoise Culhane, Ireland Out]

“While the results of this survey were not surprising to those of us who have experience working and/or living with individuals with intellectual disabilities, we’re encouraged by the very telling results that those who had an involvement with Special Olympics had better attitudes toward individuals with intellectual disabilities,” said the Chairman of Special Olympics, Timothy Shriver. “Simply put, these results are unacceptable. But, it strengthens our resolve to expand the Special Olympics experience to new generations of athletes and volunteers throughout the world. Our greatest hope is that this study will serve as the catalyst for a real and lasting change in the public’s attitudes toward the inclusion of individuals with intellectual disabilities in every aspect of society in every country on the planet.”

Overall, the survey shows that the general population lacks an appreciation of the range of capabilities of individuals with intellectual disabilities, and therefore have low expectations of how much people with mental disabilities can achieve. The study also revealed that the world still believes individuals with intellectual disabilities should work and learn in separate settings, apart from people without disabilities. It is very important that the results be viewed in a global context, as cultural values and practices vary from country to country. Thus, country-to-country comparisons are unlikely to give an accurate representation of the true attitudes behind the results.

The goal of the Multinational Study of Attitudes toward Individuals with Intellectual Disabilities was to document the social acceptance level of individuals with intellectual disabilities worldwide. In particular, the study focused on: how the general population views the capabilities of individuals with intellectual disabilities; the extent to which they should be able to employ those capabilities in inclusive settings; and exactly how far average people believe that persons with intellectual disabilities should be integrated into everyday society.

It is hoped that this survey will spur individuals, families, educators, young people, healthcare professionals, employers, service providers, sports and community organizers, and government leaders to address what can be done to promote the inclusion of individuals with intellectual disabilities in every segment of society. Suggestions include: more volunteerism with groups/organizations affiliated with the intellectually disabled, identifying and erasing attitudinal misconceptions of individuals with intellectual disabilities, and better education across all sectors of society as to what capabilities individuals with intellectual disabilities truly possess.

Commissioned by Special Olympics, the two-year study, led by Dr. Gary Siperstein of the University of Massachusetts Boston, is the largest and most comprehensive study ever conducted on this subject, reporting how people across the world view the roles and capabilities of persons with intellectual disabilities in the workplace, the classroom and in daily social life. The results will help researchers and laypeople alike better understand and document evidence of public perceptions and negative attitudes which millions of individuals with intellectual disabilities struggle with each and every day.

“By exposing the often latent beliefs of ordinary people towards individuals with intellectual disabilities, scientists, educators, social service workers, parents, friends and many others will be better equipped to combat the negative stereotypes exposed by this research. They will also be better equipped to encourage and grow the positive beliefs,” said Dr. Siperstein. “It is striking that, compared to the general public, Special Olympics families demonstrate much more positive attitudes toward the capabilities of persons with intellectual disabilities and their inclusion in society.”

“One of the greatest challenges persons with intellectual disabilities face is overcoming the barriers to inclusion in society,” said Shriver. “For many years, the athletes, volunteers and family members of the Special Olympics movement have known that the attitudes and expectations of the public determine the degree to which children, adolescents and adults with intellectual disabilities are able to learn, work and live alongside their peers without intellectual disabilities. Through this study, we now have conclusive and scientific confirmation of this long-held belief.”

The study uncovered a definite presence of negative attitudes — both within and across the countries surveyed — toward persons with intellectual disabilities. It also demonstrates the relationship between public attitudes toward intellectual disabilities and the practices within countries that impact the quality of life of these individuals. Attitudes, beliefs and expectations are, in part, influenced by the distinct cultural norms, values and variety of resources and services that are available.

 Overview of Results:

Education:

  • 78 percent believe that a lack of school resources presents a major obstacle towards inclusion of persons with intellectual disabilities in the classroom).
  • 78 percent believe that the lack of teacher preparedness presents a major obstacle to inclusion of individuals with intellectual disabilities in the classroom.
  • 66 percent believe that the negative attitudes of other students present a major barrier to inclusion in the classroom.
  • 53 percent believe that persons with intellectual disabilities pose a safety risk to others in the classroom.
  • 53 percent believe that inclusion of persons with intellectual disabilities into regular schools will impede the learning of the other students.
  • 53 percent believe that including children with intellectual disabilities in the regular classroom will likely create discipline problems.

Employment:

  • 76 percent believe that the lack of job training programs for persons with intellectual disabilities presents a major obstacle towards their inclusion in the workplace.
  • 61 percent believe that the negative attitudes of other workers present a major obstacle towards inclusion in the workplace, as well.
  • 51 percent of the respondents believe that persons with intellectual disabilities should work in either skilled or unskilled positions, with the remainder believing they should either not work or should work in a special workshop.
  • 50 percent believe that inclusion also will reduce the productivity of the other workers.

Community:

  • 67 percent believe that the public’s beliefs about the limitations of individuals with intellectual disabilities interacting in public pose a major obstacle to their inclusion in society.

Sport:

  • 46 percent of those surveyed believe that persons with intellectual disabilities are capable of playing on a team with others with intellectual disabilities; while only 14 percent believe they are capable of playing on a team with players who do not have intellectual disabilities.

Healthcare:

  • 27 percent believe that persons with intellectual disabilities receive better health care than the general population, while 39 percent believe they receive the same treatment and
  • 34 percent believe they receive worse treatment.

Media Portrayals:

  • 54 percent believe that negative media portrayals of persons with intellectual disabilities pose a major obstacle to their inclusion in society.

Across every continent, the survey shows that each individual’s image of people with intellectual disabilities affects the degree to which they believe persons with intellectual disabilities should be included in society. A curious finding is that most respondents believe that it is others’ attitudes about persons with intellectual disabilities — and not necessarily their own — that affect how persons with intellectual disabilities are included in general society. This was found in respondents’ answers across the three areas of work, school and community. They also feel that the lack of resources affected inclusion across the three areas.

“The results of this survey show that while there has been some progress in changing the public’s perception of the abilities of persons with intellectual disabilities, there is still much work to be done. Special Olympics will continue to be at the forefront in creating this change, helping individuals with intellectual disabilities to better experience life and the joy of sport,” said Shriver.

“We continue to challenge educators, employers, health care professionals and the public at large — worldwide — to introduce new opportunities for inclusion of persons with intellectual disabilities, and, once and for all, to dispel the myths surrounding their capabilities,” he continued.

About the Study:

Special Olympics and the Center for Social Development and Education collaborated with the Gallup Organization, Research and Evaluation Services of Northern Ireland and Center for Survey Research on the creation of the survey. It was conducted in 10 countries: Brazil, China, Egypt, Germany, Japan, Nigeria, Republic of Ireland, Russia, UK (Northern Ireland) and the United States. Sampling of the public was random, and respondents were selected from either a nationwide pool or from selected cities. The approximate sample size was 800 of the general public of each country, and 200 people from Special Olympics convenience samples of “family members” in Japan and the United States. The survey was administered either over the telephone or in face-to-face interviews. The margin of error is plus or minus three percent.

Intellectual Disability and Social Inclusion A Critical Review

Wednesday, October 28th, 2009

Intellectual Disability and Social Inclusion: A Critical Review by Martin R Bollard.

The above book addresses the isssue from a UK viewpoint. The book clearly shows how far behind official thinking is in Ireland. There is no guiding policy or leagl requirement that congregated settings (the large institutions) should be disestablished and closed down. There is no uniform understanding in Ireland that person centeredness should be at the core of service provision.There is certainly no comprehension that individual budgets ( providing the service user or their representative with the resources that they can use to choose which typoe of service suits them) should be available for all.

There are too many services that reject person centred principals. This book makes it clear why these services have got it wrong and, as such, it is essential reading for managers, staff and students in intellectual disability services in Ireland.

Review by Colin Griffiths

This was extracted from Frontline magazine