Fragile X Syndrome has been given a specific mention by the Prime Minister, Julia Gillard, in the proposed “A Better Start for Children with Disability” scheme. She says that “Children diagnosed with sight and hearing impairments, cerebral palsy, Down syndrome or Fragile X syndrome will benefit under the program”. Although there is as yet no cure for Fragile X, therapies and treatment can improve the lives of those affected, helping them progress.

The aim of the proposed scheme is to ensure that children who have disabilities which affect their development have access to intensive early intervention therapies and treatments. Children under six with a diagnosis of a listed disability will be eligible to receive up to $12,000 for early intervention services. A number of new Medicare funded diagnosis and treatment services will also be made available for children diagnosed before the age of 13 years with these conditions. Families will be able to access the treatment items up to their child’s fifteenth birthday.

The Better Start for Children with Disability initiative will be delivered on a similar basis to the Helping Children with Autism package which we discussed in an earlier article.

Further Information

• You can download the A Better Start for Children with Disability Fact Sheet and read the Media Release on the website of
  Bill Shorten MP, Parliamentary Secretary for Disabilities and Children’s Services: Children with disability given a better start.
• ABC video of the Prime Minister’s announcement of the scheme: PM promises cash for disabled children
• Carers Australia welcomes the Prime Minister’s announcements around better support for people with a disability and their families.

On Tuesday July 20th TV channels 7, 9 and the ABC did segments on fragile X syndrome on the Sydney news.  We were very pleased that our probono media advisor, Virginia Nichols, was successful in organising the media launch for Fragile X Awareness Day and wish to thank her for her enthusiastic support and the incredible amount of time that she dedicated to our cause.

You can view the ABC segment  by clicking on this link:  http://www.abc.net.au/news/video/2010/07/20/2959418.htm 

Free One Day Workshop

Hobart

Friday 12th March 2010

Fragile X Syndrome

The Fragile X Association, through the sponsorship of the Fred Archer Charitable Trust managed by Trust Company Ltd, have organised for the Fragile X Alliance team, led by Dr Jonathan Cohen, to provide an overview of Fragile  X syndrome.  This free workshop is open to health professionals, educators and families and carers of people affected with Fragile X syndrome.

All speakers are recognised experts in their field and will cover a wide range of management strategies relevant to developmental disabilities and autism spectrum disorders.

If you are interested please download the Hobart Fragile X Workshop flyer for more information and to register.

On 14 September 2009, the Parliamentary Secretary for Disabilities and Children’s Services, the Hon Bill Shorten MP, and the Minister for Employment Participation, Senator the Hon Mark Arbib, jointly released the National Mental Health and Disability Employment Strategy, a part of the government’s Social Inclusion Agenda. The Social Inclusion Agenda aims to address the barriers faced by people with disability, including mental illness, that make it harder for them to gain and keep work.

The Strategy sets out a number of priority actions to assist Australians with disability, including mental illness, into work. It recognises the importance of education and training as a pathway to sustainable employment, and the role of employers in increasing employment opportunities for people with disability.

A copy of the Strategy paper is available for download from the Australian Workplace website.

Monday 19th October marks the start of Carers Week 2009. Carers Day 2009 is on Tuesday 20th October. Carers Week is aimed at celebrating and acknowledging the vital role carers play in our society whilst giving carers an opportunity to get together to share support and information..

Carers Australia CEO, Joan Hughes, recently launched a new Carers Week Website . There you can find details of the events that are taking place in your state throughout the week as well as participate in various forums which give you the opportunity to share your experiences and have your say. Events vary from state to state and include talks, morning/afternoon teas, luncheons, and various types of entertainment and relaxation sessions.

Carers Week 2009 is an initiative of Carers Australia. You can find out more about the services provided by Carers Australia on the: Carers Australia and Young Carers.

Dr Don Bailey (middle) with Australian Fragile X families

The National Fragile X Survey will continue until September 2009 and is the first national study of families in Australia and New Zealand who have a child/children with Fragile X. Dr. Don Bailey, an expert in Fragile X research at R.T.I (Research Triangle Institute) International , is directing the study. The confidential results from the survey will then be shared with Fragile X organisations, researchers and legislators to help amend policy and improve practice. This study is extensive and will take a substantial amount of time, however the results are imperative in forming a national picture of the needs of families with a child/children who has Fragile X. Participation in the study is voluntary and you have the right to stop at any time. In addition, you may choose to skip any questions which you don’t want to answer. If you are unable to access the internet to complete this online survey a confidential phone interview can be arranged through contacting Jocelyn on 1300 394 636. The online survey can be accessed by clicking on the following link:

https://fragilex.rti.org

If you have any questions regarding your rights as a survey participant or any other issues please contact Jocelyn on 1300 394 636.

Significantly improving the lives of carers is the intent of a new Australian Government report which includes 50 recommendations for providing better support to carers..The report, entitled Who Cares …?, was launched on 1st May, 2009 by The Family, Community, Housing and Youth Committee.

The committees terms of reference were to obtain an improved understanding of the challenges facing carers and their support needs. More than 1300 submissions were made to the committee by carers and care organizations. The committee gave consideration to diverse options for reform including significant fundamental reform and options for the more efficient use of existing resources

A Committee media release on 1st May says that financial relief for carers is a key outcome and urges a national focus and recognition for carers.

Ms Annette Ellis, MP, chair of the committee says. in the forward to the report, that it is her view “that many of the report’s recommendations are a starting point only, providing a baseline for more fundamental and significant reforms to systems of support for carers”

The CEO of Carers Australia, Joan Hughes, says “We need to see these become government policy backed by adequate funding with the wholehearted support of all government departments, particularly the Department of Prime Minister and Cabinet”

The list of 50 recommendations can be found in the ” Preliminary Pages” of the Who Cares …? report, which is downloadable along with the rest of the report on Parliament of Australia  “Inquiry into better support for carers” page. The report, which I thought easy to read, includes explanations of the committee findings and details and examples of the submissions received.

I have included my own summary of the recommendations below but please read the report’s full list of recommendations and the report itself for more detail.

Who Cares …? Recommendations

An increase in Financial Support

• a significant increase in the base rate of carer payments and reduction of the disincentive for carers to earn supplementary income,
• increased funding and more tax concessions to help with the costs incurred for medication, therapy, aids and equipment, vehicle and home modifications,
• an increase in capital and recurrent funding for respite and other carer support services,
• for Health Care Cards to be issued under the same means test as Carer Payment to those receiving Carers Allowance.

Advocacy and Community Awareness

• a review of arrangements for systematic care advocacy and an extension of the National Disability Advocacy Program,
• a national education campaign to increase community awareness of the needs of carers,
• Promote to health and community care providers the importance of involving carers in the treatment and services of those receiving their services,
• a national information campaign to raise awareness about the need for, and benefits of, enduring powers of attorney and advanced care directives in the general community and among health and community care professionals.

Assessment and application procedures for benefits

• to expand the nationally consistent assessment process based on the Carer Eligibility and Needs Assessment-Revised questionnaire,
• a review of the assessment process for Carer Payment/Allowance (adult),
• review Centrelink’s application processes for income support for carers and care receivers,
• introducing a national carer card for recipients of Carer Payment and Carer Allowance in order to verify the relationship between a primary carer and a care receiver.

Health Care/Counselling for Carers

• a preventative health care program for carers and an expansion of the National Carers Counselling Program to better meet the demand for counselling services,
• raising awareness among GP’s of the high incidence of mental health problems among carers and their families and of the options available for support.

Support for Carers

Recommendations for an increase in support that is more nationally consistent and streamlined including:

• improvements or additions to respite and other support services for carers including expanded health and community care services in regional and remote locations and more flexibility and support for carers in the workforce,
• improvements in information, education, training and skill development for carers including
  • the establishment of dedicated Carer/Disability Unit with staff to provide specialist advice to carers and care receivers
  • to extend the Access Points Demonstration Projects to include disability services and community mental health services.
  • an expansion of the MyTime Peer Support Program to include parents of school aged children with disability.

Respite and Care Services

Recommendations for increased funding for and an urgent increase in the availability and accessibility of respite and in-home assistance:

• an increase in funding for in-home assistance, respite and other carer support services including people living in regional and remote locations,
• providing extended respite and support for all working carers,
• extending the eligibility criteria for its Respite for Young Carers at Risk Program,
• to collect nationally consistent data to more accurately determine the level of unmet need for community based carer support services.

The workforce and studying

• increase the number of hours of work, volunteering or study that those receiving Carer Payment can undertake,
• amendments to the Fair Work Act to extend the right to request flexible working arrangements to carers,
• consider the skills development and training needs of carers, particularly long-term carers, when developing plans to assist those wishing to enter or re-enter the workforce after a period of absence,
• additional funding for disability support workers in long day care, out of hours care and school holiday care to improve access for employed carers,
• ensure that employment service providers consider the specific needs of carers seeking suitable employment and encourage and support employers to provide employment opportunities for carers,
• develop flexible policies to make it easier for students to combine education with caring.

Other Recommendations

• development of nationally consistent carer recognition legislation, a national carer action plan and a national office for carers,
• consolidating portfolio responsibility for people with disabilities, people with mental illness, the frail aged and their carers into a single Australian Government department,
• nominate carers as an early priority for social inclusion on the social inclusion agenda and with the Australian Social Inclusion Board,
• national consistency and mutual recognition governing enduring powers of attorney and advanced care directives.

Further Action Recommended

• review existing legislation and policy relating to health and community care to ensure that carers are adequately recognised,
• further research, reviews and data collection on carer needs and the adequacy of community based support services including the specific needs of Indigenous carers,
• a survey to measure the financial costs to households of caring for people with disability and examining how carer payments may be restructured to better reflect differences in the levels of care provided,
• examining options to build capacity in the community care workforce, particularly initiatives to encourage retention of trained workers in the sector,
• to review the adequacy of case management or care coordination for carers and care receivers using community care, aged care, disability and community mental health services,
• Investigate whether state and territory provisions adequately allow carers to be involved in the treatment of the individuals for whom they care. Pilot studies to test the potential for carer respite and in-home assistance through ‘individualised funding programs’ for carers who want to manage the purchase of services themselves,
• review the temporary cessation of care requirements for Carer Payment and Carer Allowance recipients.