Two Little (Finger) Pricks: Carers Allowance (Child) Review

Carers Allowance (Child) Review - VICTORY

Letter received via email from The Hon Jenny Macklin MP on 22 August 2011.

UPDATE!!!!

WE DID IT!!!!!

Review of Carer Allowance (child) and Type 1 Diabetes - Australian Government Department of Families, Housing, Community Services and Indigenous Affairs - 17 June 2011

http://www.fahcsia.gov.au/sa/carers/pubs/review_carer_allowance/Documents/review_carer_allowance.pdf

Media Release - 3 August 2011:

Carer's of children up to 16 years of age with Type 1 Diabetes to receive Carer Allowance

http://www.janmclucas.fahcsia.gov.au/mediareleases/2011/Pages/carer_children_up_16yrs_with_diabete_03082011.aspx

National Carer Strategy Launch - Media Release

http://www.jennymacklin.fahcsia.gov.au/mediareleases/2011/pages/nat_care_strategy_launch_03082011.aspx

Other Press Articles:

http://news.smh.com.au/breaking-news-national/payments-for-young-diabetics-extended-20110803-1iaqb.html

http://www.theaustralian.com.au/national-affairs/health/carers-of-children-with-diabetes-to-keep-allowance-until-16/story-fn59nokw-1226107419176

http://bigpondnews.com/articles/Health/2011/08/03/Payments_for_young_diabetics_extended_646152.html

http://www.jdrf.org.au/blog/2011/08/03/a-win-for-kids-and-teens-with-type-1-diabetes/

http://cranbourne-leader.whereilive.com.au/news/story/carers-win-government-allowance-back/

http://news.smh.com.au/breaking-news-national/kids-diabetes-allowance-win-hailed-20110803-1iaqb.html

http://www.mitchfifield.com/Media/MediaReleases/tabid/70/articleType/ArticleView/articleId/481/Media-Release--Government-back-down-a-win-for-parent-power--3-August-2011.aspx

On Tuesday 2 August 2011 I received word from the office of The Hon. Jenny Macklin, MP, Minister for Families, Housing, Community Services and Indigenous Affairs, notifying me that Parliament had approved changes to the Carer Allowance (Child) legislation so that Type 1 Diabetes would now be brought in line with all other Recognised Medical Conditions that automatically qualify for the Carer Allowance up to the age of 16 years.

The change to the legislation will be back-dated to 1 July 2011.

Any Carer who has a Health Care Card for their child under 16 with T1D but does not receive the Carer Allowance will receive a letter from Centrelink informing them that they will now receive the fortnightly Carer Allowance payment. These people will NOT have to make an new application for the Carer Allowance.

Any Carer who does not have a Health Care Card for their child under 16 with T1D will need to make a new application.

It will take some time for the relevant forms to be changed at Centrelink however any new applications for the Carer Allowance for children under 16 with T1D from 1 July 2011 should automatically qualify without the need for a Care Needs Assessment Form to be included with that application. Any Carers making applications should ensure that the Medical Report Form to be completed by their child's medical professional DOES NOT include the words "and the child is under 10 years of age" next to the reference to Type 1 Diabetes Mellitus.

We did it!!! People Power Wins!!!

The Minister is scheduled to announce this decision today, Wednesday 3 August 2011, at a press conference in Melbourne.

*******

Background

Back in on 23 October 2010 a fellow T1D parent and I came together to create an online petition directed at the Australian Government as the start of a campaign to have current Carer Allowance (Child) legislation changed so that all carers of children with Type 1 Diabetes, up to the age of 16 (since that's as far as the legislation goes) will automatically receive the Carer Allowance not only to assist with the enormous financial burden placed upon these families but also to recognise the significant and ongoing level of care required by parents in order to keep their children alive, healthy and to reduce the chances of the many known serious longterm complications of this devastating disease.

As at the time I am typing this post that petition has gained almost 1,400 signatures.

As things currently stand carers of children with Type 1 Diabetes only receive the Carer Allowance automatically if their child is less than 10 years of age. Following their 10th birthday a Carer must qualify for the Carer Allowance under the Disability Care Load Assessment tool which came into effect on 1 July 2010.

If your child, beyond his/her 10th birthday, did not score enough points via the DCLA tool then the Carer Allowance for your child would be discontinued or, if your child was over 10 years of age at the time of your first Application for the Carer Allowance, your Application would be rejected.

The reasoning behind this age cut off is the Australian Government's belief that children with Type 1 Diabetes should be capable of the self-management of this condition once they have reached the age of 10 years, irrespective of their age of diagnosis and duration of living with this disease.

Many parents have appealed this decision and have failed. For most parents the loss of the Carer Allowance can have devastating consequences with some families who's T1D child has been on insulin pump therapy for years having to return to Multiple Daily Injections because they can no longer afford the additional cost of insulin pump consumables.

At the time that my friend and I started the petition I only had one child with T1D, my then 10 year old daughter. I did receive the Carer Allowance for my daughter however I later learned that my application had been approved because her Endocrinologist had indicated on the Medical Report that my daughter had serious behavioural issues with respect to the treatment setting (which is actually an understatement!) - and NOT because she has an incurable life threatening medical condition that requires careful supervision and care on my part 24 hours a day!

A few short weeks after the petition was set up I learned that my then 13 year old son had tested positive to high levels of T1D antibodies in a blood test to determine whether or not he could take part in the INIT II Clinical Trial. My son was then asked to undergo the second screening process for the Trial including fasting BGL's, and an Oral Glucose Tolerance Test. Two weeks after receiving news that he had tested positive to the antibodies we went to the hospital for the next round of blood tests. My son was diagnosed with Type 1 Diabetes before the Oral Glucose was administered and therefore could not take part in the Clinical Trial.

After the initial shock of his diagnosis had passed, and after he had received his Rufus Bear and told his team that he wanted to go on Insulin Pump Therapy as soon as possible (and ordered a purple pump) I was handed the Carer Allowance (Child) Application by the Diabetes Nurse Educator. I actually laughed.

I then had to explain my reaction and told the DNE what I knew about the Carer Allowance (Child) legislation with respect to children 10 years of age or over. It was at that time that the DNE told me that I was the second person she had heard from in the last two days about this issue and until that point the DNE's and the Endocrinologists at the hospital had assumed that all families with a T1D child automatically qualified for the Carer Allowance. She then asked if I would be prepared to contact the other parent she had spoken to the day before, who had been denied the Carer Allowance for her 13 year old newly diagnosed daughter and was appealing the decision through the Social Security Appeals Tribunal.

That Appeal was heard on 15 November 2010 and the decision of Centrelink was upheld. This parent has continued her battle through a further Appeal to the Administrative Appeals Tribunal of Australia, which hearing will take place in the near future and has the full support of the Juvenile Diabetes Research Foundation (JDRF), the Australian Diabetes Council (ADC) and theAustralasian Paediatric Endocrine Group (APEG)

And so the fight began in earnest.

Needless to say all three of my applications for the Carer Allowance for my son were rejected. This had become personal.

Letters were sent to Members of Parliament, television, radio and print media, phone calls were made and truckloads of medical journals were read and summarised.

For some unknown reason nobody in the mainstream media was interested in our story - which made the fight very difficult, but not impossible.

Then, our Knight in Shining Armour appeared! Another member of the Diabetes Online Community, who lost the Carer Allowance for her then 13 year old daughter in mid February 2011, managed to get the attention of a young journalist in suburban Melbourne! The first of the articles about the Carer Allowance fiasco was published in a suburban newspaper, The Cranbourne Leader, on 9 March 2011 and following the publication of that article the Save Our Children media campaign commenced in NewsLimited publications throughout suburban Victoria.

Through continued pressure via the Save Our Children newspaper campaign and from hundreds of parents of children with Type 1 Diabetes we had an enormous success when in late April 2011 the Minister responsible for this legislation, The Hon. Jenny Macklin, MP, Minister for Families, Housing, Community Services and Indigenous Affairs, quietly announced a Review of the Carer Allowance (Child) and Health Care Card legislation with respect to carers of children with Type 1 Diabetes. I say "quietly" because the Terms of Reference for that Review were not made public, nor were they provided to other Members of Parliament or Senate Representatives.

The Review was initially scheduled to be completed by 31 May 2011.

Again, through pressure from parents and the Save Our Children campaign, Ms Macklin agreed to a meeting with parents of children with Type 1 Diabetes as part of the Review process. That meeting was scheduled for 8:30am on the morning of Tuesday 17 May 2011 at Ms Macklin's office in the Commonwealth Parliamentary Offices in Melbourne. That meeting was attended by representatives of 6 families, including myself and my two T1D children, and the Government Relations Coordinator of the JDRF.

Children with Type 1 Diabetes meet with The Hon. Ms Jenny Macklin.

Children with Type 1 Diabetes, their Parents/Carers and a representative from the JDRF meet with The Hon. Jenny Macklin MP in Melbourne on 17 May 2011.

During that meeting each parent provided some background about the day to day care of their children, their fears and concerns, issues they deal with in the school environment, the lengths they go to in order to ensure the best possible future for their children. Ms Macklin was shocked by the level of care required and left us with the impression that she agreed that changes needed to be made.

When thanking Ms Macklin for her time the children presented her with a scrapbook of stories and images from children living with Type 1 Diabetes around the country, together with a DVD containing a video I created, both with the message, "Remember Me":

Remember Me - YouTube Video

At the conclusion of that meeting it was agreed to extend the completion date of the Review for two additional weeks so as to allow as many families as possible to provide their input and also to enable organisations such as the JDRF, ADC and the APEG, as well as other experts in T1D in children and adolescents formulate and present their evidence.

The completion date of the Review was then changed, with the agreement of families and the JDRF, to 17 June 2011.

As part of the consultation process with respect to the Review parents and other interested parties were asked to contact Ms Jenny Pearson of Jenny Pearson & Associates, who had been appointed by Ms Macklin's department to undertake the evidence gathering aspect of the Review.

Jenny Pearson and Associates Pty Ltd
Jenny Pearson
Managing Director
PO Box 246
SEMAPHORE SA 5019
Tel: 08 8449 7790
Fax: 08 8449 7789
Mob: 0417 883 094jennyp@internode.on.net

Jenny Pearson is Managing Director of Jenny Pearson & Associates Pty Ltd - a company specialising in consulting for the human services sector. Services offered include evaluation, organisational review, stakeholder consultation, planning, policy development and research.

Jenny has qualifications in nursing and disability and holds a Masters Degree in Business Administration. She has undertaken a wide range of projects at state and national levels in areas such as disability, health, aged care, child care, social security, drug and alcohol treatment and correctional services.

Ms Pearson received such an overwhelming response from parents and others associated with Type 1 Diabetes that she and Ms Macklin eventually had to set up a dedicated email address so that parents in particular could share their stories.

On 2 June 2011 the Carer Allowance (Child) Review was raised during discussions in the Senate.

Following the circulation of the transcript of these discussions many parents in the T1D community raised questions as to the level of knowledge of Senators involved in this discussion.

I then contacted Senator Concetta Fierravanti-Wells directly, provided her with background information regarding our campaign and offered my assistance with respect to any questions the Senate may have that would help them to understand the issues.

The children and I were then invited by Senator Fierravanti-Wells to attend a meeting with herself and Senator Mitch Fifield at Parliament House, Canberra on the afternoon of Thursday 16 June 2011.

The 2kids meet with Senator Mitch Fifield and Senator Connie Fierravanti-Wells

at Parliament House, Canberra on Thursday 16 June 2011.

Although our meeting was scheduled the day before the conclusion of the Review the purpose of the meeting was so that the Senators could gain further insight into the position of families living with Type 1 Diabetes given that any changes to legislation which involved additional Federal expenditure would have to be approved by the Parliament. The Senators wanted to be armed with as much information as possible to enable these changes to be approved by the Parliament as quickly as possible.

The JDRF and the ADC had until close of business on Friday 17 June 2011 to provide their Joint Statement to Ms Macklin's office. That Joint Statement was provided to Ms Macklin's office, Ms Pearson, Ms Judi Moylan MP, Senator Fierravanti-Wells and Senator Mitch Fifield on the afternoon of 17 June.

The conclusion of the Joint Statement of the JDRF and ADC is as follows:

REVIEW OF ACCESS TO CARER ALLOWANCE (CHILD) AND THE CARER ALLOWANCE (CHILD) HEALTH CARE CARD BY CARERS OF CHILDREN AGED 10 YEARS OR MORE WITH TYPE 1 DIABETES

Summary

The Juvenile Diabetes Research Foundation and Australian Diabetes Council are firmly committed to improving the lives of the type 1 diabetes community. Type 1 diabetes is one of the most common chronic diseases in children. It occurs more frequently than cancer, cystic fibrosis, multiple sclerosis and muscular dystrophy. If not properly managed, it can result in considerably reduced quality of life, many health complications, and death.

Carers of type 1 children have to be constantly on alert, day and night, to help manage their child’s condition. We know that many schools are not prepared or able to assist type 1 students during school hours, requiring carers to be available and present during school hours to help manage their child’s diabetes. We know that many carers are prevented from working as they must prioritize their child’s condition above employment obligations to their employer.

We know that on many occasions the assessment process by Centrelink staff has been well below acceptable standards of knowledge and understanding necessary to make fair and equitable assessment of a carer’s qualification. We also know that the current assessment process and forms do not adequately allow for the needs of type 1 patients as the primary carers objective is to maintain a child’s functionality to prevent complications and the possible fatality of their child.

Access to the Carer Allowance and Health Care Card through the lifting of the age threshold to 16 years, combined with an easier, clearer and more type 1-relevant questionnaire will make a positive difference to their daily management, support and care for all families of children and adolescents with type 1 diabetes.