IEM Food Grant

Payment Schedule 2024

The IEM food grant payment for 2024 is due by the Friday of the first full week of each month. Payments due to arrive by:

January 12th              February 9th               March 8th                    April 12th

May 10th                       June 7th                         July 12th                      August 9th

September 13th         October 11th                  November 8th            December 13th

Purpose of the Grant

The Department of Health information page regarding the IEM grant states: “The Inborn Error of Metabolism (IEM) Programme provides monthly financial assistance to approved grantees with protein metabolic disorders to assist with the purchasing of low protein foods. The purpose of the IEM grant is to enable people with IEM to stay on strict diets and ensure long term health is maintained. Non-food items, such as medications and supplements, cannot be purchased with money provided under the Programme.” When discussing any aspect of the grant on various forums please be mindful of its purpose. Compliance with the diet and using the grant for its intended purpose is one of the ways we as a community can demonstrate to the government the ongoing need for the grant.

Compliance

The Department of Health information clearly states that “dietary compliance” is a condition of receiving the IEM food grant. Patients diagnosed with Dihydropteridine Reductase (DHPR) deficiency, Hyperphenylalaninemia and Phenylketonuria (PKU) must reapply for the IEM grant every twelve months. This is to help monitor compliance. To ensure that you meet the reapplication criteria and can have your reapplication signed by your clinician we recommend the following:

  • Attending clinic appointments as recommended by your clinician.
    Submitting regular blood samples as recommended by your clinician.
  • Maintaining your diet and taking your supplement as suggested by your metabolic team. The recipe and product resources on our website can help you with ideas for keeping your diet interesting a varied.
  • Attending MDDA functions such as cooking days, social functions and retreats can provide support, ideas and motivation if you are struggling with your diet.
  • Contacting any of the people listed in the Link network on our website to get support and encouragement.

Contact Information

Phone: 02 6289 8980

Email: IEM program officer

[email protected]

Postal address:

IEM Program, Health Systems Strategy Division

MDP 1060, GPO Box 9848

CanberraACT2601

Australia

Online Application Forms

In our IEM Grant update we were advised that the online application forms for the IEM Program have recently been updated.

The form update includes improvements to form functionality and format as well as minor updates throughout, including updates to the Privacy statements.

The IEM program department will continue to accept old versions of the forms until 1 June 2023. After this date, they will be unable to approve applications submitted using the old forms. We suggest you discard any old application forms and from now on use the updated forms.

All new forms can be found at:

https://www.health.gov.au/resources/collections/inborn-errors-of-metabolism-program-forms

If you have any enquiries or issues with the new forms please contact the IEM program on (02) 6289 8980 or via email on [email protected].

FAQs on IEM Food Grant Compliance Update

Established in 2000, The Commonwealth Inborn Error of Metabolism (IEM) Programme provides monthly financial assistance ($279.00 per month) to approved recipients with protein metabolic disorders to assist with the purchasing of low protein foods. Individuals with an IEM must adhere to a strict life-long diet that includes specialised medically modified low protein food. These medical foods can cost in excess of 500% more than standard supermarket equivalents. The aim of the program is to assist these families to be able to afford these specialised foods that are required to manage their IEM and ensure long term health is maintained. Specialised low protein foods provide satiety and variety and assist you to stick to your low protein diet. Non-food items, such as medications and supplements, cannot be purchased with money provided under the Programme. 

Your monthly payments may cease if your reapplication documentation is not received by the Department within 15 months from the last application. Late last year The Department conducted a review of the program and its recipient’s. The review found that a significant number of recipients were not compliant with the IEM programme’s eligibility criteria. In late January 2023 the department sent letters to some recipients who were 3 years overdue, and their payments were temporarily suspended. 

The Department’s focus is for all recipients to attend their metabolic specialist appointment annually. This is to facilitate engagement, compliance with diet and other monitoring requirements so those living with a rare disease achieve optimal health and quality of life outcomes. 

As an interim measure the Department strongly encourages you to contact the Program officer (using the details provided in your letter) as soon as possible to explain your individual circumstances and to request a review of their decision to suspend. 

They will ask you to provide evidence of either: 

1. An attended appointment with your metabolic specialist in the last 12-15 months, 

2. Verifiable document evidence from the metabolic specialist or clinic staff to prove that you have made attempts to schedule a metabolic appointment within the last 12-15 months. OR 

3. You provide a completed reapplication form. (Please complete and sign the revised FORM C found on the IEM website, it has a new privacy statement). 

The Department realises it can be difficult to get an appointment at the clinic. You are expected to contact the program officer (call or email) to update them of your situation and your plans to reapply.

The Department requires people with the IEMs hyperphenylalaninemia and PKU to be reassessed annually by the metabolic specialist AND reapply for the IEM program every 12 months. 

It is the responsibility of all recipients to schedule review appointments, as required by their treating metabolic specialists and to ensure that reapplications are provided to the Department. 

Before your metabolic appointments check with your clinic that you are up to date with expected monitoring requirements, before attending so the metabolic clinician can sign off your annual IEM application paperwork. (E.g., the clinic may require evidence of two more blood spot test results).

Recipients or their Parents/Guardians/Carers are required to notify the Department of any changes to the recipient’s: 

  • Dietary compliance. 
  • Australian residency status. 
  • Contact details, including current address, email address and telephone number. 
  • Bank account details. 
  • Custody or care arrangements (if applicable); and 
  • Name Change. 

The Department must receive the notification within 14 days from the date of such changes. Failure to notify the Department within this period may result in the Department suspending the benefit.

Further Information

How to lodge an application, enquiries, more information and FAQ visit the Department of Health:

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