Highlights

• It is almost the end of the financial year and this is a timely reminder that donations to the association are tax-deductible.
• We have purchased 2 copies of the Living with Fragile X DVD. Members can borrow it through our library.
• Professor Randi Hagerman and Louise Gane are visiting us in November. They are starting off in New Zealand and then will be giving presentations in Melbourne , Sydney and Brisbane.
• Marcia Braden’s article "Public or Private" discusses teaching children to discriminate between private and public behaviors.
• Alison Archibald talks of research, carried out in Victoria, assessing how practical it is to offer population carrier screening for Fragile X Syndrome.
• News from the state support groups.

Read online or download and save: fx info Winter 2009

The Fragile X Association has just moved into its very own offices in Manly:

The telephone numbers remains the same:

• Office – Monday to Thursday 1300 FX INFO (1300 394 636)
• For Fragile X support other times: Mobile: 0409 987 012

Our president, John Kellher, says that “this is one more step to establishing an independent national organisation and we are all very excited with the prospect.”

Fragile X Awareness Day
22nd July 2009

Fragile X Awareness Day on July 22nd is to promote the awareness of Fragile X syndrome. The incidence of Fragile X can be significantly reduced through awareness and early intervention assists in providing support and strategies to
help improve the quality of life of a Fragile X child. In Australia, it is estimated that one child every week is born with Fragile X and twelve are born carriers.

Please support the Fragile X Association of Australia through Fragile X Awareness Day by holding morning teas, having sausage sizzles or just talking about Fragile X syndrome to your family, friends and colleagues.  Fragile X Awareness events can be held throughout July.

Last year we had families hold mini seminars and hosting awareness morning teas at their workplaces.  If you are holding an event please contact the Fragile X Association on 1300 FX INFO (1300 394 636) for information on fundraising.

If you are a school or organisation, please download our schools package http://www.fragilex.org.au/docs/pages/fx-fundraising-schools-kit.pdf.

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.

On looking up our webpage Brenton Phillips was disappointed to see that there was no Parent Support Group in South Australia so he decided it was time to start one up!

Brenton would love to get in touch with other families in South Australia who are affected by Fragile X. He is keen to organise family days and give representation to other families with Fragile X children and Fragile X adults in South Australia. Anticipated activities include family days, workshops and parent support.

Brenton

Brenton is the father of 2 boys, the youngest, Matthew, has Fragile X Syndrome.

Matthew wasn’t diagnosed until he was 41/2 and therefore missed out on early intervention which made life difficult as his speech and communication skills were delayed. Matt is in year 5 and loves his cricket and footy. He is a very stylish left handed batsman and when he first started playing in C Grade with mainstream kids, the others thought he wouldn’t be any good, they soon found this out to be wrong when Matty smashed them all over the ground!

Matthew is very close to his older brother and has a wicked sense of humour as you can see from some of the photos here.

If you wish to contact Brenton regarding the South Australia Support Group please visit our South Australia Page for details

The NSW Department of Ageing, Disability and Home Care (DADHC) has released a discussion paper titled “New Directions for respite services in NSW”. which broadly outlines the direction DADHC intends to take to reform and expand respite services in the state. DADHC invites comment and feedback from people with a disability, their carers and families, advocates and service providers.

The paper discusses the delivery of and access to disability respite services, the type of services provided, where they are delivered and the development of new respite services. It talks of :

• The purpose of respite
• The principles that underpin and guide the provision and delivery of respite services
• The current respite service system
• Other services that give carers a break
• Why the need to change
• Feedback from families and advocates
• Results of Research

Based on client feedback and research, the discussion paper proposes that the reform of respite care will be based on:

• the expansion of respite services and the development of new service models in response to unmet need;
• giving individuals greater control and choice in the services they receive;
• streamlining access to services; and
• building the capacity of the service system.

Research indicating who most need respite services has identified priority groups of carers. These are

• Carers of people with challenging behaviours and severe disabilities
• Young carers
• Older parent carers
• Hidden carers – carers who may not identify with the word `carer’.
• Aboriginal and Culturally and Linguistically Diverse (CALD) carers

This initiative is part of

• “Stronger Together - A new direction for disability services in NSW 2006-2016″ the NSW government’s plan to deliver better services for people with a disability and their families. The plan provides an additional $1 billion funding over the first five years.
• The NSW Carers Action Plan 2007 ­- 2012 which
  outlines the NSW Government’s commitment to the state’s 750,000 carers over its first five years. This plan recognizes:
  • Carers are recognised, respected and valued.
  • Hidden carers are identified and supported.
  • Services for carers and the people they care for are improved.
  • Carers are partners in care.
  • Carers are supported to combine caring and work

The New Directions for respite services in NSW discussion paper invites feedback from the community, until 26 June 2009, about the proposed new directions. The discussion paper is available for in download – pdf format or from the link on the DADHC’s website at www.dadhc.nsw.gov.au. A number of questions have been set for discussion:

• Priority groups of carers
  • What difference does respite make to you and your family?
  • What types of respite services have you used?
  • What ones have helped you the most? Why?
  • What types of respite services does your family need?
  • Have you faced any barriers in accessing respite?
  • Are respite services available at the best times for you?
  • When do you and your family need respite?
  • Are there any other types of respite services you would like to see provided?
• Expanding services and developing new service models in response to unmet need
  • Do you know of any other service models that are operating well in
    other jurisdictions that we should consider piloting in NSW?
  • In what ways can we improve our existing services models?
• Older Parent Carers
  • What types of respite or other services are needed for older carers?
  • How can respite services for older carers be improved?
• People with challenging behaviours and high support needs
  • How can respite services be improved so that these clients can access them?
  • How can services be delivered to meet individual need?
  • What services are needed for these client groups?
  • How can these respite services be integrated with other services?
  • How can respite services be delivered for high support and complex
    health care needs in regional and remote areas?
• Giving individuals greater choice and control in the services they receive
  • What degree of choice and control do families want?
  • In what ways can flexible respite be more flexible to suit individual needs?
  • What other activities could be provided by flexible respite services?
  • How can service providers work together to provide the right mix and balance of flexible respite activities?
  • In what ways can flexible respite services support working carers?
  • Would the provision of more tailored flexible activities reduce the need for some families to utilise centre-based respite?
• Streamlining access to services
  • How can access to centre based respite be improved?
  • How can access to other respite services be improved?
• Building the capacity of the service system
  • In what ways can DADHC support the ongoing training needs of the
    NGO sector in relation to respite, particularly surrounding the service
    provision for clients with complex needs?
  • What types of specific training are needed for respite staff?

If you wish to submit your answers to these questions, after reading the discussion paper, you can post them to:

Respite Directorate
NSW Department of Ageing, Disability and Home Care
Level 5, 83 Clarence Street SYDNEY NSW 2000

Alternatively your feedback can be emailed to respite@dadhc.nsw.gov.au

MAKATON for Parents Evening

Presented by:

Amanda Hartmann & Alanna Mylne

Speech-Language Pathologists

WYNNUM ROAD HEALTH THERAPIES

Monday 11 May 2009

5 – 8 pm

Wynnum North ECDP

405 Tingal Road, Wynnum

Cost: $33 (inc. GST)

Tea, coffee and nibbles provided

This will be an informal event focusing on:

• What is Makaton and who can use it
• Learning some new signs
• Incorporating signs and symbols into your everyday life
• Practical ideas for ‘teaching’ Makaton to your child

Makaton uses a core vocabulary of speech, sign language, symbols and photographs to develop speech and language in children. It can benefit children with speech delays, as well as those with diagnosed disabilities.

More information:

Limited Places – Please call to reserve your place now – PH: 07 3907 0561

Fragile X Syndrome has been receiving more media coverage in Australia recently. This is excellent as increasing awareness and knowledge about the syndrome will lead to more people being correctly diagnosed and to an increase in resources available for research, treatment and education

May’s edition of Cleo, which is out now, features an interview with Megan Levy, a 23 year old Australian woman who has the full mutation of Fragile X. Titled “I have FRAGILE X SYNDROME!” Megan talks about her symptoms and how Fragile X affects her life in regard to employment, relationships and socializing. Well done Megan, thank you for sharing your experiences with us.

That’s Life Magazine published an article in Issue 10 March 2009 featuring Mel Mikkleson and family. A summary can be found on the That’s Life site: My Son’s X Factor. Mel was contacted by That’s Life after she featured in a story about Fragile X in her local newspaper. Mel who is on our committee and runs the Queensland support group always works hard to promote knowledge of Fragile X.

In The Australian newspaper an article published in February, Screening for fragile X sidelined, features discussion by Don Bailey, president of the US National Fragile X Foundation, clinical geneticist Mike Field and associate professor Sylvia Metcalfe, from the University of Melbourne and Murdoch Children’s Research Institute on the issue of screening newborns. John Kelleher, president of our Association, and his wife, Christine, talk of their own experiences and problems of receiving late diagnoses for their two children with Fragile X syndrome.