Address details

Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Wednesday, 11 February 2015

Health news

You will notice that several of these news items are reprinted from the NSW Council of Intellectual Disability's monthly E-news, which you can subscribe to (without charge), here. NSW CID has an excellent record of advocacy for quality health care for people with intellectual disability, and regularly includes health information on the E-news:
NSW CID E-news is a monthly email news bulletin to update NSW Council for Intellectual Disability (NSW CID) members and supporters of recent NSW CID activities. It contains news, events and information relevant to people with intellectual disability and their advocates.
eHealth records for people with intellectual disability 
NSW CID e-news, January 2015
People with intellectual disability can register to have an eHealth record so that their health information is on a Commonwealth Government website. With their approval, doctors and hospitals can look at a person's eHealth record. NSW CID supports eHealth records which can help doctors to provide the best treatment and help you to be healthy. 
People with intellectual disability should be given support to make their own decisions about having an eHealth record. However, even with good support, some people will not understand the eHealth records process. Therefore, closely involved supporters like family members can then apply to be an ‘authorised representative’ for the person to make decisions about registration and management of the eHealth record.

For more information and to register for an eHealth record click here.
Cochlear Implants Give Young Boy with Down Syndrome a New Lease on Life at Lucile Packard Children’s Hospital Stanford
Business Wire, 4th February 2015
... “Traditionally, developmentally delayed patients haven’t been seen as ideal candidates for cochlear implants,” said Chang, associate professor of otolaryngology - Head and Neck Surgery at the Stanford University School of Medicine. “The electrical stimuli delivered by the implants have no resemblance to regular hearing. The brain has to adapt itself to learn the electrical patterns. Someone who is developmentally delayed isn’t going to progress as fast as a child who is developing normally. However, just because it’s a lot tougher to rehabilitate a child with developmental delay doesn’t mean they won’t benefit from it” ...

Monash University, 28th January 2015
MIND-IT, a research team supported by the Monash Warwick Alliance, is working to improve the wellbeing of children and adolescents with intellectual disabilities or autism, and their families ... 
... “Many families are coping well, but some are not. Research findings show that when families struggle to cope this is mainly due to issues associated with a child’s disability rather than the nature or severity of the disability itself. Such associated difficulties include access to diagnosis and treatment if the child has additional behavioural and emotional issues, and a lack of support for parents. So the good news is many of the issues causing high levels of stress in families can be addressed by better support,” Professor Hastings said ...

Congratulations to Julian Trollor
NSW CID e-news, January 2015
Dr Julian Trollor is the Chair in intellectual disability mental health at University of NSW. He has been promoted to Professor. This is a well deserved recognition of the great work being done by Julian and his team to improve the mental health of people with intellectual disability. From the start, Julian has been keen to work closely with NSW CID and has seen how crucial it is to hear the direct voice of people with intellectual disability. For example, Julian employs people with intellectual disability to co-deliver education sessions for mental health professionals.

NSW mental health plan has no action for people with intellectual disability NSW CID e-news, January 2015
NSW CID is very alarmed by the lack of specific action on the mental health of people with intellectual disability in the NSW Government’s response to its Mental Health Commission’s Strategic Plan. Click here to view the plan. 
The Mental Health Commission set out clearly the fundamental problems facing people with intellectual disability in obtaining mental health care and provided practical steps for action. The Commission’s approach is in line with the outcomes from the National Roundtable on the Mental Healthof People with Intellectual Disability which NSW CID convened in 2013.

Mental Health Minister Guy Rowell stated that the Commission’s Strategic Plan “provides a 10 year roadmap for strengthening mental health care in NSW”. However, there is no specific provision for people with intellectual disability in the initiatives the government has announced. 
NSW CID is seeking a meeting with the Minister.

No comments: