Monday, April 15, 2013

WHO's free online Wheelchair Service Training Package

It is estimated that there are more than 70 million people worldwide who require wheelchairs, yet only 5-15% of people have access. People in developing countries often depend on the donation of wheelchairs, which are frequently of poor quality and not suitable either for the users or their environment.Health and rehabilitation professionals are not always trained adequately to ensure people with disabilities have a quality wheelchair. 

After extensive expert consultations, field trials and an expert review, WHO in partnership with the United States Agency for International Development (USAID), has developed the Wheelchair Service Training Package - Basic level. WHO is in process of developing the Wheelchair Service Training Package – Intermediate level which is expected to be launched in June 2013.

The main purpose of the training package is to develop the minimum skills and knowledge required by personnel involved in wheelchair service delivery. The complete package contains all the necessary forms and checklists and guides, a trainer's manual and a set of posters and presentations. It can be freely downloaded from WHO's website. The URL is given below:

http://who.int/disabilities/technology/wheelchairpackage/en/index.html

Monday, April 1, 2013

Red Flags for Autism Spectrum Disorder


Autism Spectrum Disorder (ASD) is a complex neurological and developmental disorder that affects how a person acts and interacts with others, communicates, and learns. ASD affects the structure and function of the brain and nervous system. Because it affects development, ASD is called a developmental disorder. ASD can last throughout a person's life. People with this disorder have problems with:
  • Communication
  • Interactions with other people (social skills)
  • Restricted interests and repetitive behaviors
The symptoms of one person with autism can be very different from the symptoms of another person with autism. Health care providers think of autism as a spectrum disorder - a group of disorders with a range of similar features. 

The United Nations General Assembly unanimously declared 2 April as World Autism Awareness Day. On the eve we present before you certain valuable information for mass awareness. 


ASD includes: 
·         
  • Autistic disorder ("classic" autism). Autistic disorder is often what people think of when they think of autism.
  • Asperger syndrome. This ASD usually involves milder symptoms, mostly related to social behaviors.
  • Pervasive developmental disorder not otherwise specified (PDD-NOS, or "atypical" autism). PDD-NOS includes some, but not all, of the features of classic autism and/or Asperger syndrome.
One person with autism may have mild symptoms, while another may have more serious symptoms, but they both have ASD.
Despite the range of possible symptoms, there are certain actions and behaviors that are common in ASD and could signal that a child is on the autism spectrum. Parents and caregivers who notice these "red flags" should speak to their child's health care provider about autism and screening the child for ASD.
In general, the main signs and symptoms of ASD relate to:
  • Communication
  • Social behaviors
  • Routines or repetitive behaviors, sometimes called stereotyped behaviors

 Red Flags for ASD

Communication

Note about these red flags:

Some of these red flags apply only at certain ages, so consider what's typical for other children your child's age.

Some red flags are more strongly associated with autism than others.

If your child shows any red flags for autism, talk to his or her health care provider right away.
  • Does not respond to his/her name by 12 months of age
  • Cannot explain what he/she wants
  • Language skills are slow to develop or speech is delayed
  • Doesn't follow directions
  • Seems to hear sometimes, but not other times
  • Doesn't point or wave "bye-bye"
  • Used to say a few words or babble, but now does not

Social Behavior

  • Doesn't smile when smiled at
  • Has poor eye contact
  • Seems to prefer to play alone
  • Gets things for him/herself only
  • Is very independent for his/her age
  • Seems to be in his/her "own world"
  • Seems to tune people out
  • Is not interested in other children
  • Doesn't point out interesting objects by 14 months of age
  • Doesn't like to play "peek-a-boo"
  • Doesn't try to attract his/her parent's attention

Stereotyped Behavior

  • Gets "stuck" doing the same things over and over and can't move on to other things
  • Shows unusual attachments to toys, objects, or routines (for example, always holding a string or having to put on socks before pants)
  • Spends a lot of time lining things up or putting things in a certain order
  • Repeats words or phrases (sometimes called echolalia [pronounced ek-oh-LEY-lee-uh])

Other Behavior

  • Doesn't play "make believe" or pretend by 18 months of age
  • Has odd movement patterns
  • Doesn't know how to play with toys
  • Does things "early" compared to other children
  • Walks on his/her toes
  • Doesn't like to climb on things such as stairs
  • Doesn't imitate silly faces
  • Seems to stare at nothing or wander around with no purpose
  • Throws intense or violent tantrums
  • Is overly active, uncooperative, or resistant
  • Seems overly sensitive to noise
  • Doesn't like to be swung or bounced on his/her parent's knee, etc

Info Source: NICHD

Thursday, March 21, 2013

2013 WDSD awards declared


On Friday 15 March 2013, ahead of World Down Syndrome Day on Thursday 21 March, Down Syndrome International (DSi) announced the recipients of the 2013 World Down Syndrome Day Awards.
2013 is the fourth year of the World Down Syndrome Day Awards, presented to individuals or organisations whose voluntary, professional or scientific activities have strengthened and enriched the lives of people with Down syndrome, or contributed to scientific advancement related to Down syndrome.

This year’s recipients are as follows:

Voluntary and Professional Awards
1 individual with Down syndrome receives an award for outstanding self-advocacy:

Karen Gaffney (USA) – Long distance swimmer, motivational speaker and President of the Karen Gaffney Foundation. Karen advocates for the inclusion of people with disabilities in all walks of life, offering motivational workshops and inclusive programmes.

1 individual receives an award for outstanding voluntary activities:

Mr Ratnasabapathy Sivanandam (Singapore) – Co-Founder of Down Syndrome Association (Singapore), who has led the organisation of many important initiatives and events in Singapore and Asia including Asia Pacific Down Syndrome Conference, World Down Syndrome Congress and World Down Syndrome Day.  

 

Scientific Awards
3 individuals receive awards for outstanding contribution towards scientific advancement related to Down syndrome:

Professor Tony Holland (UK) – Chair of the Intellectual and Developmental Disabilities Research Group, University of Cambridge, whose pioneering work includes extensive research on the relationship between Down syndrome and Alzheimer’s disease.
Dr Zan Mustacchi (Brazil) – Medical and Paediatric Geneticist, Genetics Department at Darcy Vargas Children’s Public Hospital in Sao Paulo, and Founder Member of Brazilian Federation of Associations of Down Syndrome who he represents on the National Health Council.
Professor Marie-Odile Réthoré (France) – Medical Director of Institut Jérôme Lejeune who collaborated with Professor Lejeune and who has dedicated a lifetime to the medical care of people with Down syndrome and scientific research.

All recipients are invited to a formal presentation of World Down Syndrome Day Awards for the years 2013-2015 taking place at the 12th World Down Syndrome Congress (WDSC) in Chennai, India in August 2015.

World Down Syndrome Day 2013

World Down Syndrome Day (WDSD) is a global awareness day observed on 21 March each year. This date (21/3) represents the 3 copies of chromosome 21, which is unique to people with Down syndrome (DS), and people and organisations worldwide observe this day in a variety of different ways.





DS is a life-long genetic condition from conception caused by the presence of an extra chromosome in a baby's cells affecting approximately 1 in 800 live births, although there is considerable variation worldwide. DS usually causes varying degrees of intellectual and physical disability and associated medical issues. With around 7 million people with Down syndrome living worldwide, it is the most common and recognised form of learning disability. But most people with DS face a harsh reality of low life expectancy, physical and psychological abuse, stigma and segregation, and limited life opportunities as children and adults. People with DS living in poverty face these challenges but it is also true across the spectrum of wealth due to educational, political, medical and social barriers.

On 19 December 2011, the United Nations General Assembly declared 21 March as World Down Syndrome Day. The General Assembly decided, with effect from 2012, to observe WDSD on 21 March each year, and invites all Member States, relevant organizations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe WDSD in an appropriate manner, in order to raise public awareness of DS.


Down Syndrome International (DSi) is a UK based international charity, comprising a membership of individuals and organisations from all over the world, committed to ensuring quality of life and human rights for all people with DS. DSi invites everyone across the world to wear LOTS OF SOCKS on 21 March 2013 to raise awareness on WDSD. Their website says, “We want to get people talking about WDSD on 21 March, and we can do this if we all wear socks…But not just any socks...brightly coloured socks, mismatched socks, long socks, printed socks, 1 sock…maybe even 3 socks (or EXTRA socks) for 3 chromosomes. Or if you don’t normally wear socks then wear them. Just so long as they are socks which are on display and people will ask you about.”




DSi will also organise World Down Syndrome Day Conference on 21 March 2013 at the United Nations Headquarters, New York, USA. This year's World Down Syndrome Day Conference is entitled: "Right To Work". Article 27 of the UN CRPD recognises the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.

There will be presentations from people with Down syndrome, disability organisations, employers, service providers and others from around the world including North America, South America, Europe, Asia, Africa and Australia. One can watch the live UN webcast at http://webtv.un.org/

What to say, what not to say?


Useful resources:

WDSD official site 

Down Syndrome International (DSi) 

Indelible :A feature length documentary telling the inspiring stories of 7 people with Down syndrome in India, which is the official film of Down Syndrome Federation of India. This short version of the film was created specifically for the closing ceremony of WDSC 2012 in Cape Town, South Africa. Youtube link of the video is available at http://youtu.be/MMVfy6_nxp8

WDSD Events in India on 21 March 2013

Down Syndrome Federation ofIndia








Wednesday, March 13, 2013

Belgian identical twins in unique mercy killing

Reposting Bruno Waterfield’s post “Euthanasia twins had ‘nothing to live for” published in The Telegraph on 14th Jan 2013.

The two deaf twins killed by legal euthanasia in Belgium were frightened of losing their independence in an institution and had "nothing to live for".
Photo: Gazet Van Antwerpen

The two men, both aged 45, named as Marc and Eddy Verbessem, from the village of Putte, near the city of Mechelen, were both born deaf and asked for a mercy killing after finding that they would also soon go blind.

Dirk Verbessem, 46, explained that his younger brothers had lived together for all their adult lives and could not communicate with the outside world.

"Their great fear was that they would no longer be able to see each other. That was for my brothers unbearable," he said.

The deaf twin brothers had spent their entire lives together, sharing a flat while both working as cobblers and could only communicate with special sign language understood by each other and their immediate family.

"They lived together, did their own cooking and cleaning. You could eat off the floor. Blindness would have made them completely dependent. They did not want to be in an institution," said Mr Verbessem.

"I sometimes think, if they had their own wives and children, perhaps they would have had something to live for."

The brother and his parents, Mary and Remy, tried to stop the twins but were eventually persuaded by them that their lives should be ended under Belgium's euthanasia laws.

After enlisting the support of their local doctor, it took the twins almost two years to find a medical institution to administer a lethal injection after being turned down by their local hospital.

Four weeks ago, dressed in new shoes and suits, Marc and Eddy bid farewell to their parents and brother at Brussels University Hospital in Jette.

"I tried to talk them out of it even at the last moment," said their brother. "Together with my parents, I said goodbye. Marc and Eddy waved again at us. 'Up in the sky,' they said. 'Up in the sky,' we replied. And then it was over."

David Dufour, their local doctor, told The Daily Telegraph that as well as congenital deafness and approaching blindness caused by a genetically caused form of glaucoma, the twins had other severe medical problems.

"All that together made life unbearable. I have been very surprised but there is so much interest and debate about this," he said.

Dr Dufour said that the Verbessem family had overcome their opposition to the idea of euthanasia to help the twins make their case to doctors. "I have boundless respect for their parents and brother," he said. "Their family gave them the best, but hardest gift."

Under Belgian law euthanasia is allowed if a patient is able to make their wishes clear and a doctor judges that they are suffering unbearable pain.

The Verbessem case is unusual because neither of the men was terminally ill nor suffering physical pain.

Professor Wim Distelmans, the doctor that took the decision to euthanise the twins, defended his decision.

"It's the first time in the world that a 'double euthanasia' has been performed on brothers," he said. "There was certainly unbearable psychological suffering for them. Though there is of course it always possible to stretch the interpretation of that. One doctor will evaluate differently than the other."

Last month, Belgium's government announced plans to amend the law to allow the euthanasia of children and Alzheimer's sufferers. If passed, the new law will allow euthanasia to be "extended to minors if they are capable of discernment or affected by an incurable illness or suffering that we cannot alleviate".

Chris Gastmans, professor of medical ethics at the Catholic University of Leuven, expressed fear over the wider implications for the welfare of disabled people after the assisted suicide.

"In a society as wealthy as ours, we must find another, caring way to deal with human frailty," he said.


Saturday, March 2, 2013

International Conference on CerebraL Palsy and Developmental Medicine at Lucknow




R. P. Shah Memorial Trust for Children with Disabilities, Lucknow is organizing an International Conference on CerebraL Palsy and Developmental Medicine (ICCPDM) at Scientific Convention Center, Lucknow, India from 8-10 March, 2013. The preconference workshops will be on 6 and 7 March. 

With 60 faculties and expected 2000 delegates and 30 faculties from USA and Europe, this will the largest conference on cerebral palsy and developmental disabilities all over Asia organised by the R.P.Shah Memorial Trust for Children with Disabilities and American Academy of Cerebral Palsy and Developmental Medicine The trust has 8 branches all over North India. 

The conference will include delegates from Education, Services, Administration, Neurology, Neurosurgery, Nursing, Nutrition, Occupational Therapy, Orthopedic Surgery, Physiatry, Physical Therapy, Psychiatry, Psychology, Physical Medicine and Rehabilitation, Public Health, Social Workers, Speech and Language Pathologists, Orthotist and Prosthetists involved in the care of children with such problems. Scientific program is available at 

Scientific program is available here

For further details contact: 

Dr Vipul Shah
Medical Director
R.P.Shah Memorial Trust for Children with Disabilities
www.indiancerebralpalsy.com
dr.vipulshah@yahoo.com, vipulshak@rediffmail.com

Tuesday, February 26, 2013

Demand for barrier free hospitals/medical institutions

NEW DELHI: The office of the chief commissioner for persons with disabilities has asked Medical Council of India (MCI) to issue directions for barrier-free access of disabled people at all colleges and hospitals. It has also asked MCI to inform the court about the action taken within 30 days of getting the letter. 



The letter took note of a representation by Dr Satendra Singh, coordinator, enabling unit of Equal Opportunity Cell, University College of Medical Sciences, DU. It mentioned that it in January last year, a letter was written to the chief secretary, Delhi government, to take concrete and time-bound steps for enforcing accessibility standards and guidelines with utmost strictness, making budgetary provisions in each department for the purpose of providing barrier-free access to persons with disabilities, and undertake access audit and implementing recommendations of the access audit reports.

Source: Demand for barrier free buildings, TOI 26 Feb 2013