O'Keefe and Secretary, Department of Family and Community Services - [2001] AATA 301

DECISION AND REASONS FOR DECISION [2001] AATA 301

ADMINISTRATIVE APPEALS TRIBUNAL )

) No V2000/290

GENERAL ADMINISTRATIVE DIVISION          )
           Re      TRACEY O'KEEFE
  Applicant
           And    SECRETARY, DEPARTMENT OF FAMILY & COMMUNITY SERVICES
  Respondent

DECISION

Tribunal Mr J. Handley, Senior Member

Date11 April 2001
PlaceMelbourne

Decision      The decision under review is affirmed.
  .........Sgd. Mr J. Handley ........
  Senior Member
CATCHWORDS
SOCIAL SECURITY – child disability allowance – whether child with phenylketonuria (PKU) can qualify for benefit – PKU not a recognised disability under Child Disability Assessment Determination 1988 – questionnaire does not reflect special needs of children with PKU – applicant unable to achieve requisite points – recommendation that questionnaire be amended and Act of Grace Payment considered.
Child Disability Assessment Determination 1998
Social Security Act 1991 s.952

REASONS FOR DECISION

11 April 2001 Mr J. Handley, Senior Member

The circumstances of this application are very unfortunate and deserve compassionate and sympathetic attention by the respondent.
The circumstances may be briefly summarised as follows-
The application is brought by Tracey O'Keefe as the mother of Georgi O'Keefe, who was born on 22 July 1998. Georgi suffers from a condition known as phenylketonuria (PKU). The condition is described in the medical data lodged with the respondent pursuant to s.37 of the Administrative Appeals Tribunal Act as a protein metabolism disorder. Brain damage is a consequence of high levels of phenylalanine. Phenylalanine is found within protein which has caused Mrs O'Keefe to closely monitor Georgi's diet. Indeed there is a need to provide Georgi with a specialised diet. The condition is life long and statistically one in 20,000 babies are born with the condition.
The application is brought to the Tribunal seeking a review of a decision made by the Social Security Appeals Tribunal on 27 January 2000. The SSAT then decided to affirm a decision previously made by an officer of Centrelink to deny Child Disability Allowance.
The hearing was convened in Ballarat. Mr and Mrs O'Keefe appeared. Mr Todd appeared on behalf of the respondent.
Mrs O'Keefe said that prior to 1 July 1998 – that is three weeks before Georgi was born – PKU was a "recognised disability" under the Child Disability Assessment Determination 1998. It is this determination which prescribes a questionnaire which is to be completed against which scores and ratings are calculated to determine eligibility. If the disability is "recognised", a parent of a child automatically qualifies for the allowance. If the condition is not "recognised", the form is to be completed and, subject to the score, the allowance will be paid. In the present case, because the condition was not "recognised" at the date of claim, Mr and Mrs O'Keefe were required to complete the requisite questionnaire.
Mrs O'Keefe said that she was unaware why the PKU was removed as a recognised disability. She also indicated that a section of the questionnaire dealing with "special needs" was deficient because the special needs of Georgi do not apply to any of the questions asked. Accordingly, no value can be attached to any answers within that part of the form. She has therefore been unable to achieve the requisite number of points to qualify for the allowance.
Mrs O'Keefe said that Georgi is one of a number of children treated by Doctor Boneh, a consultant metabolic physician and Director of Metabolic Services at the Victorian Clinical Genetics Service located at the Royal Children's Hospital. She said that so far as she is aware, she is the only parent of a child in Ballarat with PKU. She said that Doctor Boneh presently treats six other children with PKU (outside Ballarat), whose parents have qualified for the allowance.
Conclusion & Reasons For Decision
As a matter of law I indicated to Mrs O'Keefe that the decision under review would be affirmed. This was because the condition of PKU was not a recognised disability nor could the requisite number of points be achieved under the questionnaire to satisfy s.952 of the Social Security Act 1991.
I make no finding of fact that Georgi and/or Mrs O'Keefe are the only persons in Ballarat who have not been able to qualify for the allowance for PKU, nor is it appropriate for me to make any finding with respect to the comment that the appropriate local officer has treated or assessed this application in a manner different to another Centrelink officer outside Ballarat. Similarly I do not make any finding of fact that other parents of children with the same disability have qualified for this allowance. I am unable to make these findings because of the absence of evidence. Even with evidence it would hardly be relevant to the circumstances of the present application.
Nonetheless I was impressed by the vigour and advocacy undertaken by Mrs O'Keefe. I was also moved by her particular circumstances and note that she gave up paid employment in order to provide full-time care for Georgi consistent with the abundance of medical evidence filed with the Tribunal prior to the hearing.
I also note the frustration's implicit in the report of Doctor Boneh dated 27 March 2001.
Recommendation
Three weeks before Georgi was born PKU was a recognised disability. Mrs O'Keefe would have qualified for the allowance, it would have been paid, and the anxieties and frustration associated with being denied the benefit would not have been endured. It was thought that PKU was removed as a recognised disability because of advances in treatment in recent years. Maybe, but the absence of relevant "special need" questions within the assessment tool denied any information being provided by a parent with respect to the special needs of a PKU child. Accordingly a parent making an application would be unable to have a score attached to the answers to questions of that type and, as has been illustrated by the present application, a requisite score could not be achieved.
In an evaluation of the Child Disability Assessment Tool, undertaken by the Department of Family and Community Services and published in December 1999, it was recommended that PKU not be restored to the list of recognised disabilities. However Centrelink has recommended that on the "doctors questionnaire alone, a question on extra care and attention should be added to the section on "special care needs" to cater for metabolic dietary conditions such as PKU".
Mrs O'Keefe has been in constant contact with senior bureaucrats of the respondent and was recently informed that the new assessment questionnaire had been released and was available for completion by parents of children with a disability. She recently contacted the Ballarat office of Centrelink to be advised that the form was not available. Mr Todd said that his information from officials within the Department of Family Services ('the Department') was that the new determination which would publish the amended questionnaire had not been released and would not be released before June.
The net effect of this application is that had Georgi been born 3 weeks earlier her mother would have qualified for the benefit. The Department apparently decided shortly prior to her birth that PKU had been the subject of advances in available treatment and "intellectual disability can be prevented in PKU through dietary management and a significant proportion of people with PKU now live fairly active adult lives" (refer evaluation report page 7). This may be so but it would deny the overwhelming medical evidence lodged in this application. It clearly also fails to recognise the level of care and attention provided by a parent and the special needs that a child with a PKU disability would require. Nonetheless it appears as a result of the review that the special needs of a PKU child are deserving of attention and a recommendation has been made that the questionnaire be amended. I can only infer that had this information been available at the time PKU was removed from the list of recognised disabilities that Mrs O'Keefe may well have qualified for the benefit.
I recommend that the circumstances of this application be bought to the attention of the Ministry of Finance and an Act of Grace payment be considered in a sum equivalent to the benefit which would have otherwise been paid. I recommend also that consideration be given to the allegation made in these proceedings that Mrs O'Keefe has been denied a benefit which has been paid to the parents of children with PKU who reside outside Ballarat.

I certify that the preceding paragraphs are a true copy of the reasons for the decision herein of Mr J. Handley, Senior Member.
Signed:         .....Carolyn Irons .........................................
  Secretary
Date/s of Hearing  6 April 2001
Date of Decision  11 April 2001
Counsel for the Applicant        self represented
Solicitor for the Applicant
Counsel for the Respondent    Mr M. Todd
Solicitor for the Respondent    Departmental Representative