Review of Carer Allowance (child)

and Type 1 Diabetes

17 June 2011

Contents 

EXECUTIVE SUMMARY.....................................................................................................................1

KEY FINDINGS ..........................................................................................................................................1 CONCLUSION ...........................................................................................................................................2

1.0 INTRODUCTION..................................................................................................................3

1.1 BACKGROUND TO THE REVIEW........................................................................................................3 1.2 TERMS OF REFERENCE ..................................................................................................................4 1.3 REVIEW METHODOLOGY ...............................................................................................................5

Literature review.............................................................................................................................5 Analysis of Centrelink data..............................................................................................................5 Consultations with families .............................................................................................................5 Consultations with specialist agencies and clinicians .....................................................................6 Ministerial Correspondence and Appeals........................................................................................6

2.0 INCIDENCE OF TYPE 1 DIABETES .........................................................................................7

3.0 CURRENT CARER ALLOWANCE (CHILD) ARRANGEMENTS FOR  TYPE 1 DIABETES .................8

3.1 QUALIFICATION REQUIREMENTS FOR CARER ALLOWANCE (CHILD) .........................................................8 3.2 QUALIFICATION REQUIREMENTS FOR HEALTH CARE CARD ONLY ...................................................................8 3.3 CHANGES TO THE ASSESSMENT TOOL ...............................................................................................9

4.0 FINDINGS FROM CONSULTATIONS WITH FAMILIES ...........................................................10

4.1 PROFILE OF CARERS INTERVIEWED .................................................................................................10 4.2 ISSUES ARISING FROM CARER INTERVIEWS.......................................................................................11

4.2.1 Daily care load ................................................................................................................11 4.3 OVERNIGHT CARE ......................................................................................................................14 4.4 EMOTIONAL/PSYCHOLOGICAL CARE ...............................................................................................15 4.5 ATTENDANCE REQUIRED AT SCHOOL SPORTS EVENTS, EXCURSIONS AND CAMPS ......................................16 4.6 CALLOUTS TO SCHOOL OR CHILDCARE.............................................................................................16 4.7 ATTENDANCE AT SPECIALIST APPOINTMENTS ...................................................................................16 4.8 EFFECT ON PARENTS’ EMPLOYMENT ..............................................................................................17 4.9 EFFECTS ON OTHER FAMILY MEMBERS............................................................................................17 4.10 FINANCIAL COSTS.......................................................................................................................17 4.11 AGE CRITERIA FOR TYPE 1 DIABETES ..............................................................................................18 4.12 CARER ALLOWANCE (CHILD) APPLICATION/ASSESSMENT FORMS ........................................................18 4.13 PERCEIVED INCONSISTENCIES IN THE CARER ALLOWANCE (CHILD) DETERMINATION PROCESS.....................19 4.14 COMMUNITY AWARENESS OF TYPE 1 DIABETES ...............................................................................19

5.0 SPECIALIST ADVICE AND RESEARCH EVIDENCE..................................................................20

5.1 AGE AT WHICH CHILDREN CAN SELF‐MANAGE CARE...........................................................................20 5.2 STABILISATION OF CARE REQUIREMENTS FOR TYPE 1 DIABETES ...........................................................21 5.3 ADDITIONAL FACTORS THAT SHOULD BE CONSIDERED WHEN ASSESSING QUALIFICATION FOR CARER ALLOWANCE (CHILD) ............................................................................................................................... 21 5.4 PSYCHOLOGICAL AND EMOTIONAL CARE NEEDS...............................................................................22 5.5 VARIABILITY IN CARE REQUIREMENTS .............................................................................................25 5.6 LONG TERM EFFECTS OF TYPE 1 DIABETES ......................................................................................25 5.7 FUTURE TREATMENTS FOR TYPE 1 DIABETES ...................................................................................26 5.8 SUMMARY OF SPECIALIST ADVICE AND RESEARCH EVIDENCE................................................................26

6.0 EFFECT OF NEW ASSESSMENT PROCESS FOR CARER ALLOWANCE (CHILD).........................28

7.0 CONCLUSION ...................................................................................................................31

7.1 MANAGEMENT OF DIABETES HAS CHANGED ....................................................................................31

7.2 PARENTAL INVOLVEMENT IN THE MANAGEMENT OF TYPE 1 DIABETES ..................................................31 7.3 IMPACTS ON THE FAMILY .............................................................................................................31 7.4 ACCESS TO CARER ALLOWANCE (CHILD) AND THE HEALTH CARE CARD ........................................................32

8.0 REFERENCE LIST .......................................................................................................................33

Websites Consulted:......................................................................................................................33 Data references:............................................................................................................................33

APPENDIX A ‐ DIABETES AND THE LIST OF RECOGNISED DISABILITIES (THE LIST)...............................1

APPENDIX B ‐ CARER ALLOWANCE...................................................................................................1

APPENDIX C ‐ CDAT AND DCLA QUESTIONS COMPARISON ...............................................................1

APPENDIX D – A HISTORY OF CARER ALLOWANCE AND DIABETES ....................................................1

APPENDIX E – TYPE 1 DIABETES MELLITUS .......................................................................................1

APPENDIX F ‐ INTERNATIONAL APPROACHES...................................................................................1

1

Executive Summary 

In July 2010 a new assessment process was introduced for parents and other carers applying for Carer Allowance (child). The assessment was designed to better reflect the care load experienced by carers of children with disabilities and chronic medical conditions. A carer can qualify for Carer Allowance (child) through diagnosis of a recognised disability or medical condition that is specified on the List of Recognised Disabilities (the List) or by achieving a qualifying rating through the Disability Care Load Assessment (DCLA). The DCLA incorporates a treating health professional assessment form and an assessment form completed by the carer. Since 2006, carers of children under 10 with Type 1 Diabetes have automatically qualified through the List. When a child reaches the age of 10, or is diagnosed after 10, it does not mean their carer is not entitled to Carer Allowance (child), or that the condition no longer requires care. This means that the medical condition is no longer ‘fast-tracked’ for automatic eligibility for Carer Allowance (child) and the carer needs to provide an updated assessment. If the carer meets the care requirements under the DCLA then Carer Allowance (child) will continue to be paid. Prior to July 2010, approximately half the parents of a child over 10 with Type 1 Diabetes qualified for Carer Allowance (child). Since the introduction of the new assessment process, this proportion has substantially decreased. On 15 April 2011 the Minister for Families, Housing, Community Services and Indigenous Affairs, the Hon Jenny Macklin MP asked her Department to conduct an urgent review of Carer Allowance (child) and Type 1 Diabetes. The review took place during April, May and early June 2011. Consultations were conducted with a range of specialist clinicians and non-government and government agencies and 33 parents participated in telephone interviews with an external consultant. A dedicated email inbox was established for contributions from the public. Departmental staff also reviewed relevant data, research and literature.

Key Findings 

The evidence suggests that there is a case for providing greater access to Carer Allowance by carers of children over the age of 10 with Type 1 Diabetes.

Paediatric endocrinologists, other professionals (e.g. psychologists) and parents interviewed for this review have consistently reported that care needs of children with Type 1 Diabetes do not decrease from the age of 10. Care needs are likely to increase during pre-teenage and adolescent years due to the effect of growth and other hormonal changes, psycho-social issues and insulin resistance.

Care requirements for carers of children with Type 1 Diabetes have become more intensive and complex over the past few years.

2

o Recent technological advances such as insulin pumps, although providing some flexibility for the children, have not simplified the care requirements. For example, the amount of carbohydrates eaten has to be calculated and entered into the pump and type of bolus release determined several times during the day.

o Parents are now encouraged to keep children’s blood glucose levels (BGLs) within a narrower range to avoid long-term organ damage (to eyes, kidneys, vascular and nervous systems).

o Keeping BGLs lower has long term benefits but may increase the frequency of life-threatening hypoglycaemic episodes (‘hypos’) and hence there is an increased need for supervision and care, particularly overnight.

Medical research has identified significantly improved long-term outcomes and reduced costs for children and adolescents where diabetes is well managed in childhood and adolescence.

Diabetes is often unstable during adolescence due to physiological impacts and lifestyle choices making it more challenging to manage during this period.

Parents and carers report that night time testing of BGLs (usually done at least once during the night between 2am and 3am and more often when the child is sick) have a significant impact on their overall care load.

Parents and carers (more often the mothers) have reduced work hours or are unable to secure employment due to call outs to attend the child’s childcare or school. They are required to attend school sports events, camps and excursions. They need to attend appointments with a range of health professionals. They report feeling exhausted from getting up several times during the night, every night, and have difficulty sustaining employment. Those who are able to find employment report that they need very understanding employers, flexible leave arrangements and the ability to work flexible hours in order to continue to manage their child’s condition.

Families with children who have Type 1 Diabetes report high costs associated with insulin, equipment, testing consumables (strips, lancets etc) and food requirements. The Carer Allowance (child) and Health Care Card provide important financial assistance to these families.

Since the introduction of the Disability Care Load Assessment (DCLA) in July 2010 fewer carers of children aged over 10 with diabetes qualify for Carer Allowance (child). The majority are in receipt of Carer Allowance (child) Health Care Card only.

Conclusion The evidence suggests that there is a case for providing greater access to Carer Allowance by carers of children over the age of 10 with Type 1 Diabetes.

3

1.0  Introduction 

On 15 April 2011 the Minister for Families, Housing, Community Services and Indigenous Affairs, the Hon Jenny Macklin MP asked her Department to undertake a review of access to Carer Allowance (child) and Carer Allowance (child) Health Care Card, for carers of children aged 10 years or more who have Type 1 Diabetes Mellitus. The review was originally due to be completed by 31 May 2011 but was extended to 17 June 2011 to give families and other stakeholders adequate time to provide input. The Government acknowledges that Type 1 Diabetes is a life-long condition for which there is currently no cure. Management and treatment of the condition is complex and can change on a daily basis, which can often be difficult for children and adolescents to manage without intensive, daily involvement of parents or carers.

1.1  Background to the review Type 1 Diabetes when the child is under the age of 10 is one of the conditions that automatically qualifies their carer for Carer Allowance (child). (NOTE - usually the carer is the child’s parent so this report will use parent in this sense). When the child turns 10, or if the child is diagnosed after the age of 10, their parent can apply for Carer Allowance (child) through completing a Disability Care Load Assessment (DCLA) – which has a treating health professional component and a carer component. Parents have expressed increasing concern that they no longer qualify for Carer Allowance (child) following the age 10 review using the DCLA. The DLCA replaced the previous assessment tool in July 2010. Although the tool has been in use for only 10 months, preliminary data analysis shows that the new tool is resulting in fewer parents being qualified for Carer Allowance (child) for their child aged 10 to 16 years with Type 1 Diabetes. While most of these parents are still qualifying for a Health Care Card they feel they are not receiving the financial benefit of the allowance. Based on feedback from medical professionals, including paediatric endocrinologists, Type 1 Diabetes was included on the List of Recognised Disabilities (the List) in 2006 with the age restriction on the basis that the care requirements of the child would change over time – as the child with Type 1 Diabetes became older, the parental involvement in managing the condition would lessen. Older children would be able to monitor their Blood Glucose Levels (BGLs), inject themselves with insulin, manage their diet and activity levels and adjust insulin levels as required. Most parents continued to be eligible for Carer Allowance (child) after their child turned 10 under the Child Disability Assessment Tool (CDAT).

In late 2010 some parents began to express concern with the age 10 requirement and the outcomes of their reviews. Other parents whose children were diagnosed after age 10 expressed concern that their applications for Carer Allowance (child) were rejected. They felt that the level of care they were providing was no less than when their child was younger. The parents presented their case to the Minister directly, through their local media and through social networking sites on the internet.

4

Some of the media coverage inaccurately claimed that Carer Allowance (child) is automatically cancelled when the child reaches 10. Centrelink sends a letter of notification when the child reaches 9 years and 9 months to inform the carer that the child will no longer automatically qualify for Carer Allowance (child) and will need to be assessed under the DCLA for eligibility past the age of 10 years. Previously, these notification letters could be interpreted to imply that the recipient’s child no longer required the same level of care on turning 10, or that the child no longer had Type 1 Diabetes. The letters were changed from 21 April 2011 to make it clearer that the carer’s eligibility needs to be reviewed to confirm their ongoing need for assistance.

1.2  Terms of Reference This review has examined access to Carer Allowance (child) and the associated Carer Allowance (child) Health Care Card by carers of children aged 10 years or more who have Type 1 Diabetes.

The review included an analysis of:

Whether the introduction on 1 July 2010 of the Disability Care Load Assessment (DCLA) tool had unintended consequences for access to Carer Allowance (child) and/or the CA (child) Health Care Card for carers of children aged 10 years or more with Type 1 Diabetes.

The rationale for setting age 10 as the limit for automatically fast-tracking a child with Type 1 Diabetes onto Carer Allowance (child).

Data relating to the outcomes of milestone reviews of all children at age 13 years with Type 1 Diabetes.

Options for redressing the relatively sharp decline in the number and proportion of carers of children with Type 1 Diabetes receiving Carer Allowance (child) following the introduction of the Disability Care Load Assessment tool.

The review also included consultation with key stakeholders; Diabetes Australia, the Australian Diabetes Council, the Juvenile Diabetes Research Foundation, Carers Australia, families of children with Type 1 Diabetes including those affected by and/or corresponding to the Minister on the issues outlined above, Centrelink, the Department of Health and Ageing and relevant medical and allied health professionals including endocrinologists and psychologists. The completion date for the review is 17 June 2011.

 

 

 

5

1.3  Review Methodology 

Literature review

The Department undertook a literature review of the management of diabetes including analysis of clinical guidelines, information for parents and the long term effects of diabetes on individuals. References included the National Health and Medical Research Council Clinical Practice Guidelines for Type 1 Diabetes in Children and Adolescents and the Children’s Diabetes Services publication, Caring for Diabetes in Children and Adolescents Third Edition. Information was also gathered from the Diabetes Australia, Juvenile Diabetes Research Foundation and the Australian Diabetes Council websites. International government approaches for supporting carers of children with Type 1 Diabetes were also investigated.

Analysis of Centrelink data

Analysis of data included robust analysis of Centrelink data on the numbers of carers receiving Carer Allowance (child) for a child with diabetes aged up to 10 and over 10, including looking at the numbers of customers eligible for the payment before and after the changes to the assessment tool were implemented in July 2010. Further analysis of the Carer Allowance (child) review data was undertaken to determine the numbers of carers who were eligible after their child’s age milestone reviews and to compare this with all review data for all Carer Allowance (child) recipients. Centrelink data was also compared with data from the National Diabetes Register to determine if there was a gap in the number of children with Type 1 Diabetes in Australia and those receiving Carer Allowance (child). It was not possible to analyse rejected claims for Carer Allowance (child) as the information is not collected by Centrelink. The issues raised in relevant appeals to the Social Security Appeals Tribunal and Administrative Appeals Tribunal were also considered.

Consultations with families

An external consultant was engaged to conduct telephone interviews with families affected by the changes to the assessment process. Families who had previously contacted the Minister about the issue were selected initially to provide input and other families contacted the consultant directly through the publicised freecall number.

Ministerial correspondence received between 1 July 2010 and 30 May 2011 about this issue was also considered.

An email address inbox was established for further input to the review and this was distributed through peak organisations and interest groups.

6

Consultations with specialist agencies and clinicians

The Department met face-to-face with Diabetes Australia, the National Diabetes Council, Carers Australia and the Juvenile Diabetes Research Foundation to gather evidence of the recommended approaches to managing diabetes and the issues that families had raised in relation to dealing with Centrelink, accessing payments and coping with the condition. The Department sought input from medical experts represented through the Australasian Paediatric Endocrinology Group. Some of these experts were previously involved in the review that resulted in the inclusion of Type 1 Diabetes for children up to the age of 10 on the List. Psychologists were also consulted to provide input about the psychological needs of children and adolescents with Type 1 Diabetes and their families. Consultations were also held with Centrelink and the Department of Health and Ageing.

Ministerial Correspondence and Appeals

In relation to access to Carer Allowance (child) for carers of children with Type 1 Diabetes between 1 July 2010 and 30 May 2011 there were:

31 pieces of ministerial correspondence one SSAT appeal and one AAT appeal.

The SSAT appeal upheld the decision to cancel Carer Allowance (child) as the level of care was considered insufficient. Since then the carer has lodged a new Care Needs Assessment and with additional information about behavioural problems, Carer Allowance (child) has been granted. At the time of this report being completed, the AAT appeal is ongoing.

7

2.0  Incidence of Type 1 Diabetes 

Type 1 Diabetes is one of the most common chronic childhood and adolescent diseases. There are currently 7,011 children aged 0 to 16 years with Type 1 Diabetes in Australia, including 1,616 aged 0 to 9 years old and 5,395 aged 10 to 16 years old. 1 The average annual incidence of new cases of Type 1 Diabetes in Australian children is highest in 10-14 year olds at 29.3 per 100,000 (compared with 14.6 per 100,000 in 0-4 year olds).2

1 Data extracted from the National Diabetes Services Scheme February 2011  2 Australian Institute of Health and Welfare 2010. Incidence of Type 1 Diabetes in Australian children 2000–2008. Diabetes series no. 13. Cat. no. CVD 51. Canberra: AIHW. 

8

3.0  Current Carer Allowance (child) arrangements for  Type 1 Diabetes 

Carer Allowance is an income supplement (current rate $110 per fortnight) which is not taxable or income and assets tested. It is available to people who provide daily care and attention in a private home to a person with disability or severe medical conditions. Carer Allowance can be paid in addition to a social security income support payment. Recipients of Carer Allowance (child) also receive a Health Care Card, the annual Carer Supplement of $600 and the annual Child Disability Assistance Payment (CDAP) of $1000. Carer Allowance (child) is currently paid for 141,442 children with disability, including 3,853 children aged 0 to 16 years with insulin dependent diabetes (3.0 per cent of the Carer Allowance (child) population). A further 23,028 children, including 1,715 children with insulin dependent diabetes, qualify for a Health Care Card only due to the increased level of care they require. Comparing these numbers with the incidence of Type 1 Diabetes in Australia indicates that there may be approximately 1,400 children with Type 1 Diabetes who are not represented in the Carer Allowance (child) population.

3.1  Qualification requirements for Carer Allowance (child) A carer can qualify for Carer Allowance (child) through diagnosis of a recognised disability or medical condition that is specified on the List or by achieving a qualifying rating through the DCLA. The DCLA incorporates a treating health professional assessment form and an assessment form completed by the carer. (See Appendix B for more detail on Carer Allowance). If a disability or medical condition is not on the List it does not mean their carer is not entitled to Carer Allowance (child), or that the condition no longer requires care. It only means that the medical condition is no longer ‘fast-tracked’ for automatic eligibility for Carer Allowance (child) and the carer needs to provide an updated assessment. In 2006, following a review involving medical professionals, Type 1 Diabetes where the child is under the age of 10 was added to the List to grant automatic access to Carer Allowance (child). When a child with Type 1 Diabetes whose carer is receiving Carer Allowance (child) turns 10, their ongoing eligibility for the allowance is reassessed under the DCLA. Payment is not automatically withdrawn when the child turns 10 unless the carer does not return the review form. If the carer meets the care requirements under the DCLA then Carer Allowance (child) continues to be paid.

3.2 Qualification requirements for Health Care Card only In the event that a carer of a child under the age of 16 does not qualify for Carer Allowance (child) based on the level of care required, the carer may still qualify for a Health Care Card; if the child requires at least 14 hours per week of additional care and attention.

9

The Health Care Card entitles the carer to subsidised medicines for their child under the Pharmaceutical Benefits Scheme (PBS) as well as bulk billing for doctor’s appointments (this is the doctor’s decision) and more refunds for medical expenses through the Medicare Safety Net. The National Diabetes Services Scheme (NDSS) is an initiative of the Australian Government which is administered by Diabetes Australia. It provides subsidised diabetes-related products to any Australian resident eligible for a Medicare Card who has been diagnosed with either Type 1 or Type 2 Diabetes. People registered with the NDSS are entitled to free insulin syringes and pen needles in addition to subsidised blood and urine testing strips. The subsidies available through the NDSS are further discounted where the registrant has a Heath Care Card. For example, a pack of 100 blood glucose testing strips is $34.20 when purchased under the PBS. The same product is $14.70 through the NDSS, but only $2.30 where the registrant has a Health Care Card, a difference of approximately 85%. Even with the subsidies provided by the Government for people with diabetes, there are substantial financial benefits to having a Health Care Card.

3.3  Changes to the assessment tool On 1 July 2010 the previous assessment tool Child Disability Assessment Tool (CDAT) was replaced with the current tool Disability Care Load Assessment (DCLA). The current tool was introduced after extensive review and testing and was intended to provide an assessment of the level of care that a child required rather than a measure of what they could and could not do based on their disability. The tool tightened the eligibility criteria for Carer Allowance (child) but is a more accurate measure of the amount of care that parents are providing for their children with disability. The DCLA has largely been well received by customers. Following the introduction of the DCLA, fewer parents of children with Type 1 Diabetes were achieving a qualifying score at the age 10 and age 13 reviews. Most of these parents were still qualifying for a Health Care Card but no longer received the Carer Allowance (child) and associated annual payments.

10

4.0  Findings from consultations with families 

In May 2011 the Minister invited carers of children with Type 1 Diabetes to participate in a Review of Carer Allowance (child) and Type 1 Diabetes. A total of 33 parents of 37 children with Type 1 Diabetes contacted an external consultant who conducted telephone interviews with these carers. During the interviews, parents were asked about the issues they encountered in caring for a child with Type 1 Diabetes, their experiences when applying for Carer Allowance (child), and areas they considered were not adequately covered in the Carer Allowance (child) assessment process. The interviews were conducted on a voluntary and confidential basis with carers invited to phone the consultant’s freecall number or email the consultant if they wished to arrange an interview. Information that might identify an individual child, carer or family was not requested during the interview or reported by the consultant. The duration of each interview ranged from 15 minutes to 80 minutes.

4.1  Profile of carers interviewed All states and territories except the Northern Territory were represented in the interviews. There was a significant representation (39%) from families living in regional and rural areas. More than half (61%) of the interview participants reported that they were currently receiving Carer Allowance (child) and the associated Health Care Card. Some of these parents were caring for children with Type 1 Diabetes aged under 10 years, others had children who had Type 1 Diabetes and another condition which qualified for Carer Allowance (child) and some had achieved qualification for a child aged over 10 years with a diagnosis of Type 1 Diabetes alone. The ages at which the children had been diagnosed with Type 1 Diabetes ranged from 14 months to 13 years and the children’s current ages ranged from four years to 14 years. The most frequent age group for diagnosis of Type 1 Diabetes was six to nine years, followed by 10 to 13 years. The years elapsed from time of diagnosis to these interviews ranged from 12 months to 10 years with an average of 3.3 years.

11

4.2  Issues arising from carer interviews 

4.2.1 Daily care load

Keeping blood glucose levels within normal range

Parents consistently described an intensive daily management regime in the care of their child’s Type 1 Diabetes. This care regime is aimed at keeping blood glucose levels within a recommended range to avoid short term, life threatening hypoglycaemic episodes and at the other extreme, ketoacidosis and longer term damage to the child’s organs, nervous and vascular systems. Carbohydrates are metabolised in the body to provide glucose which is essential for the cells of the body and its organs to function. Insulin is an integral part in this process enabling glucose to move from the blood stream into the body’s cells. Hypoglycaemia (low blood glucose level) is a medical emergency which can quickly progress (within minutes) to loss of consciousness, seizures and death if not treated immediately with glucose by mouth if the child is conscious, or by injection if the child is not able to safely swallow or retain food. Hypoglycaemia (commonly referred to as a ‘hypo’) may result from inadequate carbohydrate intake, insulin dosage too high for the food intake consumed, or increased energy use by the body e.g. during and after exercise or other activity, emotional excitement, stress or due to hormonal influences. Ketoacidosis occurs when insulin levels are low, blood glucose levels rise too high (because there is insufficient insulin to enable the body’s cells to use the glucose) and the body burns fat reserves in an attempt to supply vital organs with energy. Ketones are a toxic by-product of the fat-burning process and at high levels this results in ketoacidosis which makes the child very unwell and lethargic within hours and eventually comatose. Diabetic ketoacidosis is a life-threatening condition often requiring hospital treatment. Children may develop high blood glucose levels (BGLs) when they are sick, stressed, have received inadequate insulin, consume inappropriate foods or for a range of other uncertain or complex, interacting reasons. Ketoacidosis is treated with insulin and other life sustaining measures. Ketoacidosis may be the first indication that a child has developed Type 1 Diabetes. Many of the parents interviewed described their previously healthy child becoming unwell, deteriorating rapidly and within a few hours being admitted to hospital and an intensive care unit. The diagnosis of Type 1 Diabetes quickly followed blood tests performed at the hospital. The daily care load for parents of children with Type 1 Diabetes is therefore focussed on balancing and timing the child’s carbohydrate intake, exercise/activity levels, and insulin dosage and monitoring the child’s blood glucose levels and when required (particularly if the child is sick) testing the urine or blood for ketones as well.

Carbohydrate intake

Carbohydrates in the child’s food must be measured and counted in order to match the dose and type of insulin given and the child’s activity levels. Parents participating in the interviews described how they must:

12

pre-plan and organise the child’s meals

shop for healthy food and examine all food labels for carbohydrate content

pack and label (with carbohydrate count) the child’s food taken to school, kindergarten, pre-school or child care

ensure that the child has emergency carbohydrates and glucagon injection available wherever they go (a ‘hypo kit’)

give the child extra carbohydrates if blood glucose fall below normal range

ensure the child has additional carbohydrates before, during and after sports or other physical activity.

Administering insulin

Insulin dosages are measured as a number of ‘units’. There is slow acting, intermediate and fast acting types of insulin. The child may be prescribed different types and doses of insulin at various times of the day. The movement to more intensive management of blood glucose levels means that even adults may have several insulin injections each day. (A decade ago, two or three injections per day was more likely to be the norm.) There are a number of ways in which the child’s insulin dose can be administered:

pen injection (insulin injection pens holding replaceable cartridges of insulin where the number of insulin units can be dialled and injected)

syringe and needle (i.e. the insulin is drawn up from vials using a standard syringe and needle – this method may be used where two types of insulin are mixed, e.g. x units of slow-acting insulin and y units of fast-acting insulin administered in one injection)

insulin pump (A needle is inserted under the skin and fixed with a dressing, remaining in situ for up to 3 days. A line/tube goes from the needle to a small computerised insulin pump which contains a reservoir of insulin. The pump can deliver a slow continuous level of fast-acting insulin throughout the day. The pump can also deliver a larger dose of insulin (a ‘bolus’) when food is eaten or blood glucose level is high. The user enters data such as current blood glucose level, the number of grams of carbohydrates eaten and the type of bolus required, e.g. a standard bolus of insulin to be administered at a mealtime, a square wave bolus which divides the dose into four smaller bolus doses released every hour for the next four hours or a correction bolus given when blood glucose level is high. The pump calculates and releases the required amount of insulin.)

Most of the parents interviewed, reported using insulin pumps or planning to use these in the near future. Parents attributed insulin pumps with achieving better blood glucose control and giving their children more freedom in some respects, e.g. being able to sleep in or be more flexible with mealtimes. Interviewees stressed that their workload was not decreased by the use of a pump. Entering data into the pump, site changes and checking for line blockages, site infection, replacing batteries and reservoirs, etc all require skilled care. The insulin pump also has to be removed for sport activity and then replaced. The cost of insulin pumps and consumables is a barrier to use for some families (see 4.10 Financial Costs).

13

Some carers of older children (from around 10 or 11 years) were encouraging their children to self-administer insulin with adult supervision of the dosage. Some carers commented that children of this age could not calculate and prepare more complex insulin doses, e.g. drawing up two types of insulin with a syringe and needle. Non-compliance can present risks in self-administration of insulin. For example, some parents described their teenage children not wanting to use their pump in the presence of others while at school or test their blood glucose levels. Some children were omitting food or insulin doses. Not wanting to appear different to their peers was reported to be a significant issue for many of the children and ‘teenage rebellion’ against the relentless regime of treatment required for their condition was another issue described by some parents. At school, children with insulin pumps usually have a detailed management plan and are supervised by teachers or aides to ensure that the correct carbohydrate count and type of bolus is entered into the pump at lunch-time. Teachers or aides may also supervise the child’s blood glucose level testing. Most of the parents reported that teachers will not, or are not permitted, to administer insulin injections. Where the child self-administers injections, teachers may agree to check the dose. Some parents reported having to attend school to administer their child’s insulin. Two families had resorted to home-schooling their children following difficulties with administration and other care of their child’s diabetes at school.

Monitoring blood glucose and ketone levels

Monitoring blood glucose level (BGL) is an essential part of diabetes management. Most of the parents reporting testing their child’s BGL several times during the day e.g. on waking, before meals, two hours after each dose of insulin given, before bed and during the night. Testing occurs more frequently if the child is sick, participating in sport or if their BGL is too high or low. If the child’s BGL is outside of the acceptable range, retesting may be done before corrective action (e.g. carbohydrates or insulin) and then checking BGL again. Most carers reported using finger prick lancets and testing strips inserted into a glucometer which reads the reagent strip and displays the BGL amount. Some carers referred to continuous glucose monitors (where a needle inserted under the skin collects and reports tissue glucose levels every few minutes); however, none were using these devices on a long-term basis. The units are costly to purchase (approximately $1,200) not subsidised by the National Diabetes Services Scheme (NDSS) or private health insurance and the consumables were said to cost $75 every five to six days. Units can be hired from some hospitals for short-term monitoring of round the clock BGLs. Testing for ketones in the blood or urine at least two or three times per week is recommended but is done much more frequently when the child is sick as this is when BGLs tend to rise and there is an increased risk of diabetic ketoacidosis. Testing for ketones can be done using urine test strips (these are subsidised under the NDSS) and/or more accurate blood test strips (more expensive and not subsidised). Some parents reported using a box of 10 ketone test strips in a single day when their child was ill.

14

BGL readings are usually recorded and reported regularly to the child’s Diabetes Educator and Paediatrician/Paediatric Endocrinologist. There is also now a blood test (Haemoglobin A1c, i.e. HbA1C) which is usually performed when the child is reviewed by the diabetes team or specialist. HbA1C provides a longer term indicator of the level of BGL control over the preceding two to three months. Some parents expressed frustration with the difficulties in achieving the target HbA1C level. Most of the parents said that their child’s care needs had not stabilised even several years after diagnosis. A number of factors that could affect daily insulin requirements were identified, including:

time of day level of activity (in past 24 hours and planned for the next 24 hours) body temperature ambient temperature illnesses stress excitement fatigue type of food eaten, including fat content and glycaemic index hunger levels hormone fluctuations growth spurts.

Parents are educated about the long term damage that can result from poor control of BGLs. The parents interviewed for this review, took the responsibility for good management of their child’s Type 1 Diabetes very seriously.

Other daily care requirements

Parents described a range of other duties in managing their child’s condition, including:

entering food and insulin diary onto the computer (for later reporting to dietician and endocrinologist)

ordering and organising equipment and consumables.

4.3  Overnight care All of the parents interviewed for this review said they regularly tested their child’s BGL overnight and nearly all did this every single night. Usually the reported regime was to test the child before bed, then at midnight, again at 2am to 3am and then at 6am to 7am. Parents reported testing more frequently if the child was sick or had a low BGL at bedtime. The finding of a night time BGL that is too low or high requires corrective action by the parent and several described the difficulties they experienced in having to wake their child to give them extra carbohydrates or trying not to wake them up when performing a finger prick blood test. Often, the 2am finger prick test turned into an hour of giving the child carbohydrates to eat or drink and then waiting to retest and ensure the child’s BGL had returned to a safe level.

15

Most of the interviewees were mothers and although some said they shared or rotated the overnight care responsibilities with their partner, most, if not all, of the responsibility generally lay with the mother. Parents described setting an alarm clock to make sure that overnight BGL testing occurred. Some interviewees described the effect that lack of sleep has on their employment options. The result of this regular disturbance to parents’ sleep was described as ‘exhausting’. Parents were very conscious of ‘never getting a break’ and ‘never having a sleep-in’. Lack of sleep was one of the main reasons, along with school call-outs, that carers cited when discussing inability to work at all or inability to work full-time in their preferred job. (See section below regarding effect on employment) The burden of night time care was particularly felt by single parents and those whose partners were away from home due to work or other commitments. Many of the parents said they had little support from extended family or friends. Parents described being unable to allow their child to stay overnight in the care of others who had not been trained in how to care for the child’s diabetes.

4.4  Emotional/psychological care Parents interviewed for this review described a range of emotional and psychological issues for their children and for themselves as parents. Several of the mothers interviewed reported that they were receiving treatment and medication for depression. Depression was also reported amongst the children. Some of the parents said that their children had threatened or attempted suicide. Parents described other acts of self-harm or potential self-harm including skipping meals, missing insulin doses and threats to run away from home. Behavioural/compliance issues were reported to increase in teenage years. Several of the children were reported to have anxiety issues, including a fear of going to sleep, fear of hypoglycaemic episodes and needle phobia. Parents described their concerns about the issues they expected to face during their child’s teenage years. For example, some said they had heard of teenage girls deliberately running their BGLs high to avoid weight gain and/or in fear of the embarrassment of having a ‘hypo’ in public. Some of parents stated that although the child may become a little more independent in managing the physical aspects of their diabetes care during teenage years, their emotional/psychological needs increase significantly during this time and the parent’s role becomes much more challenging. Many, but not all of the parents reported that they had access to a psychologist or counsellor through the child’s hospital-based diabetes team.

16

Most of the parents commented on the never-ending, constant and ongoing nature of the care required for Type 1 Diabetes. Many also expressed frustration and anxiety about the difficulties in keeping BGLs within an acceptable range.

4.5  Attendance  required  at  school  sports  events,  excursions  and camps 

Almost half of the parents interviewed for this review said they regularly had to attend school sports events, excursions and camps. Most of the parents attended all of their child’s sports events to ensure that extra carbohydrates were given and BGLs monitored more frequently. In several cases, the child was not permitted by their school to attend school camps unless accompanied by a parent. Even where this attendance was not mandatory, most of the parents did not feel confident enough to give teachers and support staff responsibility for the child’s care for an extended period, including overnight care.

4.6  Callouts to school or childcare All of the parents reported being contacted by their child’s school, kindergarten or child care on a regular basis in relation to the child’s Type 1 Diabetes. On many occasions, these calls required the parent to attend the school or centre in order to administer insulin or change an insulin pump site or to take the child home. For some children, their school diabetes management plan specified BGL levels at which the child was required to be collected by a parent and taken home.

4.7  Attendance at specialist appointments Most of the children in the interview sample attend a paediatric diabetes clinic for review every three months accompanied by a parent. At these appointments it is usual for the child to have blood taken for analysis and to see their treating paediatrician or paediatric endocrinologist, a diabetes educator, dietician and possibly a psychologist, counsellor or social worker. The three monthly clinic appointments can therefore take almost a full day once travel to and from the clinic is included. Families living in regional and rural areas need to travel to city-based paediatric clinics if a visiting service does not cover their region. Parents reported other specialist appointments outside of the three monthly clinic regime, including podiatry (foot care which is important for people with diabetes) and ophthalmology (to check for the first signs of eye damage due to diabetes). Visits to the family GP are also frequent. Several carers also reported hospital admissions with one parent having to stay with the child in hospital. Time off work, travel and car parking costs, and fees or gap payments for some consultations not covered by Medicare or private health insurance were concerns for many of the parents.

17

4.8  Effect on parents’ employment For parents in the workforce, calls to attend school and time off for medical appointments require a very accommodating employer and flexible work arrangements. Parents reported an increased incidence of childhood illness in children with Type 1 Diabetes and said their children were often sick and had to stay at home from school and could not be left alone at home due to the increased risk of unstable BGLs and ketoacidosis. For working parents, this means more time absent from the workplace. Effects on employment for parents and carers were described in the report of the DiabCo$t Australia study which surveyed 2200 people with Type 1 Diabetes selected from the National Diabetes Services Scheme register.

Nineteen percent of carers reported being retired or currently not working in order to care for the person with diabetes. Carers took an average of almost 3 days off work in the previous 3 months to care for the person with diabetes. The employment situation of 17% of carers had changed in order to care for the person with diabetes with an accompanying reduction in income for nearly 70% of these carers resulting in mean annual lost wages of $7,413 per carer. 3

4.9  Effects on other family members Many of the interviewees described the effects of their child’s Type 1 Diabetes on other members of the family and on family functioning as a whole. Parents described the family’s life as revolving around the care of their child’s diabetes. Family meals, activities, outings, relationships with friends and ability to have a holiday were all reported to be significantly affected. Some parents described the impact of their child developing Type 1 Diabetes as ‘almost like having a baby again’. The impact on siblings was also described by several carers. These effects ranged from the sibling ‘feeling invisible’, fearful that they too may develop Type 1 Diabetes (in some cases, siblings had undergone testing to identify genetic predisposition to the condition) and anxiety about the wellbeing of their brother or sister.

4.10  Financial costs Parents cited a wide range of costs associated with caring for a child with Type 1 Diabetes. Although some items are heavily subsidised through the National Diabetes Services Scheme (NDSS), for example, needles and syringes, blood glucose testing strips and urine testing strips, other items carry a considerable cost to the consumer. The Health Care Card that is provided alone or with the Carer Allowance (child) payment, depending on the assessment results, reduces the cost of insulin

3 Colagiuri S, Brnabic A, Gomez M, Fitzgerald B, Buckley A, Colagiuri R. DiabCo$t Australia Type 1: Assessing the burden of Type 1 Diabetes in Australia. Diabetes Australia, Canberra. November, 2009. (p.2) 

18

prescriptions substantially. Most of the parents felt they could not cope financially without the Health Care Card. Parents also considered the Carer Allowance (child) payment provided important financial assistance. For example, some parents used this and/or the annual Child Disability Assistance Payment to purchase health insurance for the child or pay for expensive equipment items such as insulin pumps. Parents’ estimates of the monthly costs of providing care for a child with Type 1 Diabetes ranged from $130 to $930 per month with the Health Care Card (the latter amount included costs of travel to clinic appointments). This estimate increased to $1,728 per month without the Health Care Card for one child using an insulin pump. Insulin pump usage was estimated to cost anywhere between $50 and $130 per month more than the use of insulin injections. Parents also reported paying more for food, with healthy and low glycaemic index foods costing more than other options and extra food supplies purchased to manage episodes of low BGL. The parents of children who have Type 1 Diabetes and coeliac disease also cited the high cost of gluten-free foods. Several interviewees expressed concern about how their child would pay for insulin and other essential supplies once they turned 16 and through young adult years when income was likely to be low. Some had heard of young adults using out of date insulin or long-acting insulin because they could not afford to fill their insulin prescriptions. The DiabCo$t Australia study (2009) found the total average annual cost per person with Type 1 Diabetes was $4,669.

4.11  Age criteria for Type 1 Diabetes All of the parents interviewed for this review asked why the age of 10 had been chosen as the cut-off point for children with Type 1 Diabetes and most argued that entitlement to Carer Allowance (child) should continue until at least the age of 16. Several parents called for the Health Care Card to be a lifelong provision for people with Type 1 Diabetes.

4.12  Carer Allowance (child) Application/Assessment Forms Some carers commented that there was little in the Carer Allowance (child) application forms of relevance for carers of children with Type 1 Diabetes, although not all carers had used the new forms. Some carers felt that the questions in the forms were too limiting. Several parents said they could not understand why their Carer Allowance (child) eligibility is reviewed.

19

4.13  Perceived  inconsistencies  in  the  Carer  Allowance  (child) determination process 

Some parents felt that there were inconsistencies in the Carer Allowance (child) determination process, for example, parents in similar circumstances having different eligibility outcomes and carers receiving inconsistent advice from Centrelink. Several parents reported being advised by Centrelink officers that they would continue to receive the Carer Allowance (child) payment only to receive a cancellation letter a couple of weeks later. Some parents drew comparison between the level of care they provided for their child with Type 1 Diabetes and that of other parents they knew who had children with conditions such as Down Syndrome or ADHD and continued to receive Carer Allowance (child) through to the age of 16.

4.14  Community awareness of Type 1 Diabetes Several parents commented on poor awareness of Type 1 Diabetes amongst the general community and even within the health professions.

20

5.0  Specialist advice and research evidence 

The review received advice from a range of specialist clinicians and agencies in respect of the recommended care of children with Type 1 Diabetes.

5.1  Age at which children can self­manage care All of the advice and research evidence indicates that continued parental involvement in the care and management of a child’s Type 1 Diabetes is important past the age of 10 and through adolescence. The Australasian Paediatric Endocrine Group (APEG) provided the following advice:

Brain development, particularly frontal lobe development, is ongoing during adolescence into the early 20’s. Early-mid adolescence is precisely the time when a high level of parental involvement is required to encourage, model and supervise good executive management of diabetes i.e. insight, decision making, reasoning, multi-tasking, self-monitoring for errors etc. – all key executive skills which are not yet fully ‘on-line’ . In Australia adolescents are not considered responsible or capable of driving a car or voting until after 17 or 18 years – why would the complicated and life-preserving tasks of diabetes management be considered any less important or demanding? Hence we would consider that the age at which children can self-manage daily care to be between 16-18 years of age. Even at that age, significant support is needed. (Response from APEG, 19 May 2011)

Psychologists also questioned the reasoning behind the age 10 decision. Other specialist agencies also described significant care needs during adolescence. There is support in the research literature for the ongoing involvement of parents and other family members in diabetes care through adolescence.

Research has shown that family members who provide high levels of support for diabetes care have youngsters who adhere better to their diabetes regimen. . .

The results of these studies indicate that family-based, behavioural procedures such as goal-setting, self-monitoring, positive reinforcement, behavioural contracts, supportive parental communications, and appropriately shared responsibility for diabetes management have improved regimen adherence and glycemic control. . .

Research has shown that when parents allow older children and adolescents to have self-care autonomy without sufficient cognitive and social maturity, youths are more likely to have problems with diabetes management. Thus a critical aspect of behavioural family management of diabetes is finding ways for parents and family members to remain involved and supportive, but not intrusive, in their youngster’s daily care. (Research evidence)4

4 Delamater A.M., ‘Psychological care of children and adolescents with diabetes, ISPAD Clinical Practice Consensus Guidelines 2009 Compendium, Pediatric Diabetes 2009: 10 (Suppl 12): 175‐184, John Wiley & Sons AIS. (pp.177‐178) 

21

5.2  Stabilisation of care requirements for Type 1 Diabetes When asked how long after diagnosis it would generally take for treatment and day to day care of Type 1 Diabetes to stabilise, clinicians’ views supported those of carers, i.e. that the care needs never stabilise.

Type 1 Diabetes in the young can never be considered to have ‘stabilised’. The clinical goalposts are constantly moving due to the physiology of puberty, new therapies, novel and often challenging environments, and mental health issues in both carers and their children. (Response from APEG, 19 May 2011)

5.3  Additional  factors  that  should  be  considered  when  assessing qualification for Carer Allowance (child) 

The assessment process for Carer Allowance (child) asks parents/carers about the following factors that may be particularly relevant for children with Type 1 Diabetes:

preparation or administration of medications (including injections)

blood testing or urine testing performed by the parent/carer at least three times a day

attending health care appointments multiple times per month

inability to access general child care, after-school hours care or vacation care programs due to the child’s special care needs

being called to the child’s school or child care to attend to their special care requirements or collect them due to their health problems

only able to leave child in the care of others when they have had specific training and are willing to manage the child’s care needs

disrupted sleep at night

irritable behaviour.

Other significant care factors suggested by the specialist clinicians and agencies consulted for this review included:

meal provision including appropriate foods

blood testing at least four times a day

interpretation of blood glucose profiles

calculating appropriate insulin doses for food and activity on a daily basis (usually at least three or four and up to eight insulin injections per day)

implementing strategies to prevent hypoglycaemia

treatment of hypoglycaemic episodes (e.g. injection with Glucagon pen injection)

provision of emotional and psychological support (APEG)

parents’ disrupted sleep

impairment of child’s ability to do everyday things (e.g. during a hypo)

effects of hyperglycaemia on behaviour, skill levels and school work

22

self-harming by abusing or misusing insulin.

The Medical Report for Carer Allowance (child) is completed by a health professional currently involved in the treatment of the child and asks the health professional to indicate if:

‘Child is assisted on a daily basis with at least 2 blood tests to measure blood glucose levels, injections and special dietary management and the child is not capable of determining medication levels, food intake or self-administration of medication.’ (Item M-10n)

This item may be a determining factor in qualification or non-qualification for Carer Allowance (child) where a child 10 years of age or older has Type 1 Diabetes but no other disability, medical condition, developmental delay, special care need or behavioural problem. When asked if this item (M-10n) is an appropriate indication of care load for the parent/carer of a child with Type 1 Diabetes, APEG responded as follows:

No, this ‘item’ does not cover the considerable burden of modern management of Type 1 Diabetes in the young. For example it does not allow for the high levels of emotional support and advocacy provide by parents for their diabetic children. It also does not allow for the high levels of emotional distress experienced by parents themselves (e.g. 20 per cent of mothers have post-traumatic stress disorder up to one year after diabetes diagnosis in their child). It should also be expanded to include the need for blood tests four times a day and the complexity of insulin adjustments for the usual activities of a young person.

The main point is that the need for assistance applies to all young people with Type 1 Diabetes. (Response from APEG, 19 May 2011)

Diabetes specialist agencies also described the complexity of contemporary management of Type 1 Diabetes.

5.4  Psychological and Emotional Care Needs It had been suggested that although children with Type 1 Diabetes may become more independent in managing the physical aspects of their condition as they grow older, their emotional and social support needs may increase over time, particularly during teenage years. Specialist clinicians and agencies were asked about the psychological and emotional care needs of children with Type 1 Diabetes, particularly during adolescence. The evidence points to an increased level of psychological disorders and emotional care needs in adolescents who have Type 1 Diabetes.

Research has shown that by mid to late adolescence approximately one in three patients will have a DSM IV psychiatric disorder (anxiety, depression, eating disorder). This is the ‘tip of the iceberg’. All young Type 1 Diabetes sufferers need significant support from caregivers due to the complex nature of the disease and its management and the developmental changes over this time. Further, the physical changes during growth and puberty render the diabetes much more difficult to manage. . .

23

The above mentioned rate of mental health disorder is approximately double the rate seen in age and sex-matched controls (i.e. adolescents without diabetes). In addition to those with a diagnosed mental health disorder, all are dealing with so called ‘diabetes distress’ because of the complexity and the burden of Type 1 Diabetes on the individual and his or her family. Emotional care needs are therefore significantly greater compared with those without the condition for all children and adolescents with Type 1 Diabetes. . . Tests are available and have been used in research studies and recommended for clinical care but these are time consuming to administer and analyse and would need to be done repeatedly. It should be assumed that all need such support. Where support is given the prognosis for outcomes are improved. (Response from APEG)

Some of the best documented evidence regarding the impact and nature of psychological problems experienced by children with Type 1 Diabetes and their families is the NHMRC Clinical practice guidelines: Type 1 Diabetes in children and adolescents, Chapter 13. Psychosocial aspects (pp. 142-147) and in Australia publications of researcher Dr Elizabeth Northam and colleagues at the Royal Children’s Hospital, Melbourne (e.g. Northam EA, Lin A, Finch S, Werther GA,and Cameron FJ (2010). Psychosocial well-being and functional outcomes in youth with Type 1 Diabetes 12 years after disease onset. Diabetes Care. 33(7):1430-7). In this cited study, the mental health referral rates for youth with Type 1 Diabetes, over the previous 12 years, were higher by 19 per cent and school completion rates were lower by 17 per cent compared to their same-age peers. Over one-third of clinical participants were not currently receiving specialist care and this group had higher mental health service usage in the past (61% vs. 33%). (Response from the Australian Clinical Psychology Association)

Research findings indicate children with Type 1 Diabetes are at risk for adjustment problems during the initial period of adaptation after diagnosis. When adjustment problems exist, children are at higher risk for continued adjustment difficulties. There is growing evidence, particularly from North America, that young people with diabetes appear to have a greater incidence of psychiatric disorders. . . There is also evidence that adolescents with diabetes, especially girls, have a higher incidence of eating disorders . . . It is estimated that 10% of adolescent girls with Type 1 Diabetes may meet diagnostic criteria for an eating disorder, a rate twice as common as in girls without diabetes. . .Poor metabolic control has been associated with a number of other psychosocial problems including anxiety and poor self-esteem. When psychological adjustment problems persist into late adolescence, there is evidence indicating greater risk for poor diabetes management during early adulthood. (Research evidence)5

5 Delamater A.M., ‘Psychological care of children and adolescents with diabetes, ISPAD Clinical Practice Consensus Guidelines 2009 Compendium, Pediatric Diabetes 2009: 10 (Suppl 12): 175‐184, John Wiley & Sons AIS. 

24

Psychologists interviewed for this review also described the following psychological conditions associated with Type 1 Diabetes in childhood and adolescence:

mood changes

distress and grief (e.g. upon realising that this condition is ongoing, for life)

increased risk-taking behaviour

rebelliousness

non-disclosure (e.g. not telling teachers or friends about the diabetes)

non-compliance

difficulties coping with peers and the level of understanding of peers, not wanting to be seen as different

phobias (e.g. of injections and/or blood)

eating disorders (one psychologist said that eating disorders were twice as common in girls with Diabetes)

alcohol abuse

depression leading to neglect of self-care, forgetting to inject insulin or eat properly, often resulting in hospital admissions.

In the context of Type 1 Diabetes many adolescents experience a deterioration in metabolic control often attributable to erratic meal and exercise patterns, poor adherence to treatment regimens, hazardous and risk taking behaviours, eating disorders and endocrine changes associated with puberty, leading to greater insulin resistance.

Changes in body habitus, particularly weight gain in females can be unwanted diabetes-related side effects, sometimes associated with changes in the tempo of pubertal maturation provoking insulin omission to effect weight loss. (Research evidence) 6

Research studies have also shown an increased risk for neurocognitive deficits in young people with diabetes, including information processing weaknesses, learning problems, lower performance at school, and negative effects on measures of intelligence, attention, processing speed and long-term memory.7 Specialist agencies also described the psycho-social impact of Type 1 Diabetes on parents and family relationships.

6 Court J.M., Cameron F.J, Berg‐Kelly K., Swift PGF, ‘Diabetes in Adolescence’, ISPAD Clinical Practice Consensus Guidelines 2009 Compendium, Pediatric Diabetes 2009: 10 (Suppl 12): 185‐194, John Wiley & Sons AIS. 7 Several studies cited in Delamater A.M., ‘Psychological care of children and adolescents with diabetes, ISPAD Clinical Practice Consensus Guidelines 2009 Compendium, Pediatric Diabetes 2009: 10 (Suppl 12): 175‐184, John Wiley & Sons AIS. (p.176) 

25

Research studies have confirmed psychological effects on parents.

. . . many parents have psychological problems after the diagnosis of Type 1 Diabetes in their children. Mothers appear to be at risk for psychological adjustment problems after their child’s diagnosis, with clinically significant depression noted in approximately one-third of mothers. . . most of these adjustment problems are resolved within the first year after the child’s diagnosis. . . One study found that 24% of mothers and 22% of fathers met criteria for a diagnosis of post-traumatic stress disorder six weeks after their child had been diagnosed. (Research evidence)8

5.5  Variability in care requirements Specialist clinicians were asked about any variability that occurs in the level of care required for children with Type 1 Diabetes.

5.6  Long term effects of Type 1 Diabetes The long term effects of diabetes management during adolescence were also considered.

It is well established that the adequacy of care received during childhood and adolescence is the main determining factor affecting outcomes in adulthood, these outcomes include diabetes complications such as kidney disease, heart disease, eye disease as well as mental health outcomes. (Response from APEG)

This specialist opinion is supported by strong research evidence.

The Diabetes Control and Complications Trial (DCCT) studied 1.441 volunteers aged 13 to 39 years with Type 1 Diabetes over a ten year period from 1983 to 1993. The study compared the effects of standard control of blood glucose levels versus intensive management. Intensive management elements in the DCCT included: testing blood glucose levels four or more times a day injecting insulin at least three times daily or using an insulin pump adjusting insulin doses according to food intake and exercise following a diet and exercise plan making monthly visits to a health care team comprised of a physician,

nurse educator, dietician and behavioural therapist.

The DCCT study demonstrated that keeping blood glucose levels as close to normal as possible slows the onset and progression of eye, kidney and nerve damage caused by Diabetes (i.e. 76% reduced risk of eye disease, 50% reduced risk of kidney disease and 60% reduced risk of nerve disease).

The DCCT researchers estimated that intensive management doubled the cost of managing diabetes but this cost was offset by the reduction in medical expenses related to long-term complications and by improved quality of life.

8 Delamater A.M., ‘Psychological care of children and adolescents with diabetes, ISPAD Clinical Practice Consensus Guidelines 2009 Compendium, Pediatric Diabetes 2009: 10 (Suppl 12): 175‐184, John Wiley & Sons AIS, (p.176)  

26

The most significant side effect of intensive management was an increased risk of hypoglycaemia.

A follow-up study, Epidemiology of Diabetes Interventions and Complications (EDIC) found that intensive blood glucose control reduces the risk of any cardiovascular disease event by 42% and the risk of a nonfatal heart attack, stroke or death from cardiovascular causes by 57%.9

Specialist opinion emphasised the important role of parents in adolescent management of Type 1 Diabetes.

The parent plays the central and most important role in all aspects of care and is the major determinant of the outcome. For example, in the largest international study of determinants of clinical outcomes (in over 2000 adolescents with diabetes), the strongest determinant of HbA1C (or disease control) was how effectively the adolescents communicated with and worked with their parents. Family dynamics was a stronger determinant of outcomes than insulin regimen or access to specialist care services, i.e. parental interaction was the pre-eminent determinant of disease outcome. (Response from APEG)

5.7  Future treatments for Type 1 Diabetes Future treatment options for Type 1 Diabetes were also discussed in the review consultations with specialist clinicians and agencies. It was acknowledged that new therapies and approaches are emerging. There are limitations in these developments. For example:

pancreatic islet cell transplant can be done but the effects of anti-rejection drugs and poor availability of donor organs mean this is still a rare procedure and the risks and adverse effects generally outweigh the potential benefits

an insulin pump with intra-cutaneous glucose monitoring has been developed (the closest thing to an artificial pancreas) but this is still undergoing research.

5.8  Summary of specialist advice and research evidence Many of the issues raised by parents and other carers of children with Type 1 Diabetes are supported by clinical opinion and research evidence. These findings include:

Treatment of Type 1 Diabetes has changed over the past 10 years and there are now more intensive efforts to prevent long term complications. This has made treatment and care more sophisticated and complex, especially during adolescence when diabetes often becomes more difficult to manage and complications accelerate.

Care needs of children with Type 1 Diabetes do not decrease during adolescence. Care needs may increase as the diabetes becomes more difficult to manage during growth and puberty and the child experiences emotional and psychological issues.

9 http://diabetes.niddk.nih.gov/dm/pubs/control/ Results of DCCT reported in the New England Journal of Medicine, 329(14), September 30, 1993 Results of EDIC reported in the New England Journal of Medicine, 353(25), December 22, 2005 

27

Research has shown that continued parental involvement and support through adolescent years is associated with improved adherence to treatment regimes and better long-term health outcomes.

Overnight testing of blood glucose levels, e.g. at 2am is a regular and recommended practice for children and adolescents with Type 1 Diabetes. Most hypoglycaemic episodes and associated seizures occur at night, so night time care and supervision are important throughout childhood and adolescence.

The three main risk areas for death in Type 1 Diabetes are hypoglycaemia, ketoacidosis (e.g. during illness) and suicide.

Some organisations referred to the growing incidence of Type 2 Diabetes in children with some now requiring insulin (one estimate had this group numbering about 200 children across Australia, with higher incidence amongst Aboriginal children).

Specialist diabetes agencies confirmed the high costs for families in providing care for a child with Type 1 Diabetes care. These costs are likely to increase during the child’s teenage years (e.g. due to increased consumables and increased amounts of insulin as the child body becomes more insulin resistant).

Specialist agencies also described the limitations that care responsibilities, (particularly requirements to attend to the child’s care needs at school), place on parents’ workforce participation and ability to earn income.

28

6.0  Effect of new assessment process for Carer Allowance (child) 

Prior to implementing the Disability Care Load Assessment (DCLA), the Child Disability Assessment Tool (CDAT), determined eligibility for Carer Allowance (child) for children whose conditions were not on the List. The CDAT focused on the functional ability of the child in comparison to a child of the same age without a disability or medical condition. The new DCLA is a broadly focussed assessment that targets the care needs to determine eligibility. It was developed in consultation with paediatric medical and allied health professionals from a variety of specialties. A range of carer advocacy and health professional organisations were consulted during the development of the new assessment tool, and 1,200 carers participated in the pilot. The DCLA uses a set of questions to identify the child’s care needs to determine eligibility for Carer Allowance (child). The questions are structured into four key domains, or aspects of a child’s circumstances.

Domain A – Cognitive Behaviour – identifies care load associated with caring for a child who, as an example, has severely disrupted sleep, impaired communication and conditions impacting upon a child’s ability to interact socially.

Domain B – Behaviour that impacts on others – is only required to be

completed if the child is more than 36 months old and the carer considers that the child has more behaviour problems than other children of the same age.

Domain C – Everyday Tasks – is to be completed if the child is more than

12 months old and the carer considers that the child has more problems doing everyday tasks than other children of the same age.

Domain D – Special Care Needs – is to be completed in relation to a child of

any age to identify if the child has any special care needs such as requiring the use of a ventilator or dialysis.

The tool is used for assessing the care load for a wide range of disabilities and medical conditions and the scoring and weighting system provide for many combinations of responses that depending on the age of the child may qualify the carer for Carer Allowance (child). While it is difficult to directly compare the two tools as they are quite different in the way in which scores are allocated and weighted, some comparisons can be made. In the DCLA, questions 53, 54 and 55 in the special care needs domain potentially relate to care provided for a child with Type 1 Diabetes. In the old CDAT questions C10o, C10j and C10m applied. (See comparison of questions in Appendix C). The questions relating to diabetes in the DCLA do not score as highly as those in the CDAT. The CDAT provided three opportunities for parents of children with Type 1 Diabetes to score qualifying points.

29

Q53 (about time spent administering medications) in the DCLA can be aligned with C10o in the CDAT. The main difference being that simply selecting this CDAT question would have qualified a carer for Carer Allowance (child) under the old tool, in comparison Q53 only represents six per cent of a total qualifying score under the DCLA. The DCLA has care load questions that could be relevant for children with Type 1 Diabetes. Q54 (health care appointments, interventions, blood urine tests) and all of Q55 (care provided by others) could contribute approx 15 per cent of a qualifying score. With the exception of blood urine tests which are already covered in C10o, none of these have similar questions in the old CDAT. It should also be noted that the new questions (54 and 55) cover areas which were identified as deficiencies by carers who participated in the development of the DCLA. There are no questions in the DCLA that correspond to C10j ‘Child is over the age of five years and requires care provided by parents more than twice each night between the hours of 10pm and 6am’ or C10m ‘Child has an inherited metabolic disorder that is being treated by medically prescribed diet as the basis of treatment so that it will not lead to neurological disability’. Both these questions could have a potential impact for a carer of a child with diabetes. Following the introduction of the new tool, the number of carers of children with diabetes aged 10 and over who qualify for Carer Allowance (child) has dropped from 51 per cent to 8 per cent.

Carer Allowance (child) review outcomes

The review outcomes of insulin dependent Carer Allowance (child) recipients between September 2010 and May 2011 were analysed. In 13 per cent of these cases the carer retained their Carer Allowance (child) following review. In 78 percent of the reviews, the carer received a Health Care Card only and 9 per cent of the reviews resulted in a rejection or withdrawal. The insulin dependent diabetes review outcomes compare favourably with all review outcomes (13 per cent retention on Carer Allowance (child) compared to 16 per cent for all conditions). Although this data shows that the retention rate on full Carer Allowance (child) after review for IDD cases is similar to, if not better than, that of other conditions for those aged from 10 to 15 years, it should be interpreted cautiously because it involves relatively small numbers.

30

Figure 1 – Review Outcomes of Carer Allowance (child) recipients with a child with insulin dependent diabetes.

Review Outcomes - Insulin Dependent Diabetes Carer Allowance (child)

Reject/Withdrawn

9%

CA Grant13%

HCC Grant78%

31

7.0  Conclusion  

 7.1  Management of diabetes has changed Evidence suggests that the approach to management of Type 1 Diabetes has changed. Parents are now encouraged to keep the child’s BGLs within a much narrower range (different ranges are recommended for before and after meals, at bed time and during the night) than was previously recommended. Equipment and testing is becoming more sophisticated. Results of the BGL and ketone tests need to be interpreted taking into account the child’s activities and food intake and sound judgement is required in order to take appropriate action. When diabetes is well managed in childhood and adolescence, long term health consequences are significantly reduced.

7.2  Parental involvement in the management of Type 1 Diabetes  Guidelines recommend that parents remain more involved in the management of their child’s diabetes, even into adolescent years. Parents are encouraged to maintain regular contact with their child’s school and it is the parents responsibility to educate the teachers and school staff about diabetes and their child’s management plan. At special school events such as excursions, camps and sports days when mealtimes don’t follow schedule and activity levels differ, parents may need to attend the events to ensure that their child’s condition is properly managed. Children and adolescents with diabetes are also more susceptible to mental health issues.

7.3  Impacts on the family Parents highlighted the costs involved in managing their child’s diabetes – equipment, food and appointments. The also demonstrated a reduced ability to secure employment or the need to reduce hours or find more flexible working arrangements to enable them to support their child. The Carer Allowance (child) and the Health Care Card provide important assistance for parents of children with Type 1 Diabetes. In addition, the Government provides further support to children with Type 1 Diabetes and their families including:

Around $140 million each year through the National Diabetes Services Scheme, administered by Diabetes Australia, for subsidised access to syringes and needles, test strips and insulin pump consumables.

$6 million over four years to subsidise up to 80 per cent of the cost of an insulin pump for eligible children through the Type 1 Diabetes Insulin Pump Program provided through the Juvenile Diabetes Research Foundation.

$350 million each year through the Pharmaceutical Benefits Scheme for medicines such as insulin.

32

7.4 Access to Carer Allowance (child) and the Health Care Card The evidence suggests that there is a case for providing greater access to Carer Allowance (child) by carers of children over the age of 10 with Type 1 Diabetes.

33

8.0 Reference List 

Ambler, Geoffrey and Fergus Cameron, 2010, Caring for Diabetes in Children and Adolescents (3rd ed.), Children’s Diabetes Services.

Australian Institute of Health and Welfare, 2010, Australia’s health 2010. Australia’s health series no. 12. Cat. no. AUS 122. Canberra: AIHW

Australian Institute of Health and Welfare, 2010, Incidence of Type 1 Diabetes in Australian children 2000–2008. Diabetes series no. 13. Cat. no. CVD 51. Canberra: AIHW.

Australian Institute of Health and Welfare, 2009, Insulin-treated diabetes in Australia 2000–2007. Diabetes series no. 11. Cat. no. CVD 45.Canberra: AIHW.

Cameron, Fergus. “Teenagers with Diabetes: Management Challenges”, 35(6) (June 2006) Australian Family Physician

Colagiuri S et al. November 2009. DiabCo$t Australia Type 1: Assessing the burden of Type 1 Diabetes in Australia. Diabetes Australia, Canberra.

Court J.M., Cameron F.J, Berg-Kelly K., Swift PGF, ‘Diabetes in Adolescence’, ISPAD Clinical Practice Consensus Guidelines 2009 Compendium, Pediatric Diabetes 2009: 10 (Suppl 12): 185-194, John Wiley & Sons AIS.

Dantzer C, Swendsen J, Maurice-Tison S and Salamon R, “Anxiety and Depression in Juvenile Diabetes: A Critical Review”, 23 (2003) Clinical Psychology Review 787

Delamater A.M., ‘Psychological care of children and adolescents with diabetes, ISPAD Clinical Practice Consensus Guidelines 2009 Compendium, Pediatric Diabetes 2009: 10 (Suppl 12): 175-184, John Wiley & Sons AIS.

Overland, Jane, Michael Sluis and Rachel Reyna. 2008. Straight to the Point: A guide for adults living with Type 1 Diabetes, Juvenile Diabetes Research Foundation.

Kids in the House: Parliament House, Canberra 2010. 2010. Juvenile Diabetes Research Foundation.

Websites Consulted:

Australian Bureau of Statistics: http://www.abs.gov.au/

Australian Institute of Health and Welfare: http://aihw.gov.au/

Diabetes Australia: http://www.diabetesaustralia.com.au/

Juvenile Diabetes Research Foundation: http://www.jdrf.org.au/

Munted Pancreas: http://www.muntedpancreas.com/forum/

Data references:

Centrelink Administrative Dataset

Australian Institute of Health and Welfare National Diabetes Register dataset

Appendix A ­ Diabetes and the List of Recognised Disabilities (the List) 

The final report on the Evaluation of the Carer Allowance (child) List of Recognised Disabilities (June 2004) contained suggestions from the reference group on conditions that should be considered as additions to the List, including Diabetes Mellitus Type 1. In addition, the Government received numerous representations requesting that Diabetes Mellitus Type 1 be added to the List. After reviewing why this condition was not added in the past, the reference group argued that Diabetes Mellitus Type 1 satisfied the criteria for inclusion, as carers need to provide constant care and are required to supervise the child regarding diabetes management. Additionally, the reference group argued that adolescents require supervision to prevent some teenagers rejecting diabetes management and thus being at risk of diabetic health related complications. In March 2005, the then Minister for Families and Communities announced amendments to the List and commented that she would seek further additional expert medical advice regarding Diabetes Mellitus Type 1. One of the assumptions behind the inclusion of a disability or medical condition on the List is that they are consistently severe enough to almost always qualify a carer for Carer Allowance (child) through assessment against the Child Disability Assessment Tool (CDAT). The grant and customer figures for insulin dependant diabetes did not support its inclusion on the List as only 60 per cent of customers assessed against the CDAT were qualified for Carer Allowance (child) payment. Comments and feedback from the experts included:

Requirements for care and restriction of activities, is significant and relatively uniform in Type1 Diabetes Mellitus up until the age of 15 years and Type 1 Diabetes Mellitus should be a listed condition for both the Carer Allowance (child) and Health Care Card.

Preschool children require close supervision and all primary care from their parents/carers. School-age children may also require primary care but also need their parents to coordinate/educate other significant adults such as teachers, sports coaches etc. Adolescents usually become more responsible for their own primary care.

The level of care and requirements for all diabetic children are much higher than for normal children. However, the nature of care required changes with the age and developmental stages of a child or young person.

The majority of children from the age of 10 years or so would be able to be largely independent (though needing carer’s supervision) in managing their condition, while most children at a younger age will be able to do their own blood tests.

1

2

Skilled levels of personal care are required by the majority of children until they go to high school and that the variability of needs is in the adolescent age group. Certainly, newly diagnosed adolescents would have such a need for at least a year after diagnosis.

Five possible policy options were then considered by the reference group, based on the opinions and input of the medical experts:

1. Diabetes Mellitus Type 1 does not fully meet the three criteria for inclusion of a medical condition on the Lists;

2. Inclusion of Diabetes Mellitus Type 1 on the List for children under 10 years;

3. Inclusion of Diabetes Mellitus Type 1 on the List for children under 13 years;

4. Inclusion of Diabetes Mellitus Type 1 on the List for children under 13 years and young people between 13 years and 25 years for the first year following diagnosis; and

5. Inclusion of Diabetes Mellitus Type 1 on the List for children under 16 years. The reference group was unable to reach a strong consensus for any particular policy option. However, the majority of members did recommend inclusion of Diabetes Mellitus Type 1 in some form on the List. The reference group was requested to indicate their first two preferred policy options. When both preferences were combined, the reference group’s preferred policy option was Option 2: Inclusion of Diabetes Mellitus Type 1 on the list for children under 10 years. This was subsequently proposed by the Department and accepted by the Minister and announced as part of the 2006-07 Budget. From 1 October 2006, Diabetes Mellitus Type 1 where the child was under 10 years of age was added to the Carer Allowance (child) List of Recognised Disabilities (the List). When the child is nine years and nine months Centrelink contacts the parent to advise that the child needs to be reviewed to determine ongoing eligibility for Carer Allowance (child). On 1 July 2010, the CDAT used for qualification for Carer Allowance (child) was replaced with the Disability Care Load Assessment (DCLA). This was one of the recommendations of the Carer Payment (child) Review Taskforce Report, February 2008, which was to have a tool that was more focussed on care load rather than functional ability. From this date, the same assessment process is now being used for both Carer Payment and Carer Allowance (child). This was another recommendation of the Report to streamline the assessment and application process and lessen the burden on carers. No changes were made to the List (which is a component of the DCLA Determination) or by association to the qualification requirements for Diabetes Mellitus Type 1.

Appendix B ­ Carer Allowance 

Carer Allowance is an income supplement (not means tested) paid to eligible carers of a person with disability or a medical condition. Carer Allowance is paid in recognition of the caring role, not because a disability or medical condition has been diagnosed. The current rate of Carer Allowance is $110 per fortnight. Under the Social Security Act 1991 Carer Allowance is indexed on 1 January each year by the amount of the annual change in the Consumer Price Index. There are two stages for assessing eligibility when caring for a child under the age of 16 with a disability (Carer Allowance (child)).

Stage 1 – List of Recognised Disabilities

The child is first assessed against the List of Recognised Disabilities (the List). The List contains certain disabilities and medical conditions that are constantly severe enough to qualify the carer for the allowance.

Diabetes Mellitus Type 1 when the child is aged under 10 years was added to the List in 2006 following advice from medical experts in the fields of paediatric endocrinology, diabetes and child community health. These experts assessed Diabetes Mellitus Type 1 against the criteria for inclusion of medical condition in the Child Disability Assessment Determination’s List of Recognised Disabilities. The information provided in relation to the review and the names of the medical experts remain confidential.

Stage 2 – Disability Care Load Assessment

If a child’s medical condition or disability is not on the List, they are assessed using the Disability Care Load Assessment (DCLA) which considers the level of care required by the child and the level of care provided by the carer. The DCLA consists of four domains measuring behaviour, functional ability and special care needs, including language, self-care, social and community skills. Raw scores are adjusted for age appropriateness. The assessment process is designed to provide equal access to Carer Allowance (child) for carers of children with similar care needs, even where the cause and type of disability differ. The DCLA is not aimed at specific disabilities, medical conditions or particular age groups. In July 2010 the DCLA replaced the previous tool which focused on the functional ability of the child in comparison to a child of the same age without a disability or medical condition. If the care load is sufficiently high the carer will qualify for Carer Allowance (child).

Care Load Reviews

Carer Allowance (child) customers who care for a child under 16 years of age who has not qualified through the List are subject to care load reviews. The reviews include a care needs assessment to be completed by the carer and a medical assessment to be completed by a treating health professional. Care load reviews occur at developmental age milestones when the child reaches four years eight months, 10 years and 13 years. This is in recognition of the child’s changing

1

2

circumstances, independence and capacity to self-manage and possible stabilisation of the child’s condition. It is accepted that many children with disability may become more independent in the management of their disability as they mature, requiring less parental care and attention. Once the child reaches 16 years their carer is no longer eligible for Carer Allowance (child) and a new application for Carer Allowance (adult) must be completed using the Adult Disability Assessment Tool (ADAT) to determine eligibility.

Carer Allowance (child) – other benefits

Health Care Card

Recipients of Carer Allowance (child) receive a Health Care Card. This recognises that the care receiver may have higher medical costs than a child without disability or a severe medical condition. In the event that a carer of a child under the age of 16 does not qualify for Carer Allowance (child) based on the level of care required, the carer may still qualify for a Health Care Card; if the child requires at least 14 hours per week of additional care and attention. The Health Care Card entitles the carer to subsidised medicines for their child under the Pharmaceutical Benefits Scheme (PBS) as well as bulk billing for doctor’s appointments (this is the doctor’s decision) and more refunds for medical expenses through the Medicare Safety Net. Ex-Carer Allowance (child) Health Care Card for 16-25 year old full time students who held a Health Care Card on the day before their 16th birthday (introduced 1 October 2007).

Child Disability Assistance Payment

The Child Disability Assistance Payment is a $1000 annual payment made for a child with disability under 16 years who attracts a payment of Carer Allowance (child) for their carer. The payment can be used to assist families purchase support, aids, therapies or respite that they require for their child with disability. A carer is qualified for a Child Disability Assistance Payment if they receive an instalment of Carer Allowance (child) for their child/children for the period that covers 1 July.

Carer Supplement

Carer Supplement is a $600 annual payment paid to recipients of Carer Allowance for each person they care for. An additional $600 supplement is paid to recipients of Carer Payment. The purpose of the supplement is to provide additional financial security and to assist in alleviating financial pressures to eligible carers. To qualify for the supplement, the carer must be in receipt of Carer Allowance and/or Carer Payment for the period that covers 1 July.

Appendix C ­ CDAT and DCLA questions comparison 

Child Disability Assessment Tool (CDAT) – no longer in use

Question C10o:

Child is assisted on a daily basis with at least two blood tests to measure blood glucose levels, injections and special dietary management and the child is not capable of determining medication levels, food intake or self-administration of medication.

Question C10j:

Child is over the age of 5 years and requires care provided by parents more than twice each night between the hours of 10pm and 6am.

Question C10m:

Child has an inherited metabolic disorder that is being treated by medically prescribed diet as the basis of treatment so that it will not lead to neurological disability.

Disability Care Load Assessment (DCLA) – current assessment tool Question 53:

Do you prepare or administer medications related to the child’s medical condition?

(Medications include tablets, other oral medicines, injections, puffers/inhalers, suppositories, enemas, ointments or creams prescribed by a medical practitioner) (if yes, indicate how many minutes per day)

Question 54:

Do you provide any of the following supports or treatments for the child?

Please tick any that apply.

Attending health care appointments related to the child’s disability or medical condition multiple times per month

2pts

Exercises prescribed by a physiotherapist, speech therapist, occupational therapist or other specialist at least twice a week

2pts

Applying daily splints, braces, special garments or mobility aids recommended by a health practitioner

1pt

Behavioural program recommended by a psychologist, psychiatrist or other therapist

2pts

Early childhood intervention activities recommended by a teacher, therapist or other disability specialist

2pts

Sign language or hearing equipment where the child is deaf or has a severe hearing impairment

2pts

Equipment or tactile aids or other assistance around the home where the child is blind or has a severe visual impairment

1pt

Blood testing or urine testing performed by you at least three times a day

1pt

1

2

Question 55:

Do any of these other care needs apply to you and the child you care for?

Please tick any that apply. I am unable to access general child care, after-school hours care or vacation care programs due to this child’s special care needs

1pt

I am often called to the child’s school or child care to attend to their special care requirements or collect them due to their health or behavioural problems

1pt

This child has been excluded from school or child care for more than one day in the last school term because of their health care needs or behavioural issues

1pt

This child can only attend school part-time due to the severity of his/her disability or medical condition or because school supports are not available

1pt

I have to attend and stay at school or child care to provide care for my child due to the severity of his/her disability or medical condition or because school supports are not available

1pt

I can only leave this child in the care of others when they have had specific training and are willing to manage the child’s care needs

1pt

Appendix D – A History of Carer Allowance and Diabetes 

1996

As part of the ‘Refinement of the Child Disability Tables’ the Treating Health Professionals Reference Group in July 1996 considered which conditions could be considered to make up a list of conditions that provide automatic eligibility to the Child Disability Allowance (CDA). At this time, Diabetes Mellitus was under consideration for inclusion but only for children less than 6 years of age but was not included.

1997

During the ‘Implementation of the Child Disability Tables’ progress report in September 1997, the ‘List of Manifest Conditions’ and ‘Chronic Medical Conditions’ were again reviewed. The expert reference group decided that Diabetes Mellitus Type 1 was not to be added as ‘The effect of this condition on the child’s development and functional abilities is variable. Once stabilised, the condition is unlikely to result in significant restriction to child’s normal activities. Requirement for skilled personal care by parent/carer is likely to reduce with child’s age’.

1998

On 1 July 1998 the Child Disability Assessment Tool (CDAT) was introduced as a part of the eligibility assessment for CDA. The CDAT was developed in consultation with peak disability and carer organisations and with specialists in childhood disability from a range of medical and allied health professional backgrounds. The CDAT includes a functional assessment and a List of Recognised Disabilities (the List). A child with a condition on the List would qualify their carer without the need for the functional assessment.

1999

In July 1999 an expert reference group in their discussion on the ‘Evaluation of the Child Disability Assessment Tool (CDAT) – Review of the Carer Payment Profoundly Disabled Child (PDC) Measure considered if diabetes should be included in the List of Chronic Medical Conditions. It was requested by ‘peak bodies’ that ‘The Carer Allowance (child) be granted automatically to all children with insulin dependant diabetes mellitus under the age of 6 years.’ There were ‘concerns that the CDAT fails to take account of aspects of the management of diabetes and fails to provide for an adequate measurement of the severity of the condition and its impact’. It was also suggested in this same group that ‘the special care needs section of the CDAT should be expanded to include – monitoring blood glucose, insulin injections, monitoring diet, behaviour management, etc associated with diabetes’. Expert medical advice was received that the effect of Diabetes Mellitus Type 1 on the child’s development and functional abilities is variable. The Australian Government was advised that once stabilised, the condition is unlikely to result in significant restriction to the child’s normal activities and that the requirements for skilled personal care by the parent or carer is likely to reduce with the child’s age.

1

2002

Amendments to the CDAT resulting from a 1999 review of its effectiveness were implemented on 1 January 2002. Four special care needs criteria were added to take into consideration assessment issues for children with chronic conditions (including diabetes) where the effects of those conditions may be variable. A number of minor amendments to refine the operation of the tool were also implemented. Other options were considered at this time including the possibility to include ‘age appropriate’ alternatives to the diabetes specific special care needs question. Children under 12 years of age require parental/carer supervision, after this age there is gradually lesser dependence on parental input (although still a considerable and variable amount during teenage years). Another suggestion was that all children aged under the age of 8 with Diabetes Mellitus Type 1 automatically receive Carer Allowance (child) plus a Health Care Card and all children above 8 receive a Health Care Card only.

2004

The Carer Allowance population was reduced by 22,850 in 2004 when a CDAT grandfathering arrangement finished. The final report in June 2004 on the ‘Evaluation of the Carer Allowance (child) List of Recognised Disabilities’ contained suggestions from the ‘Reference Group’ on conditions that should be considered as additions to the Lists of Severe Disabilities and Medical Conditions’ – this included Diabetes Mellitus Type 1, in addition the Government also received numerous representations requesting that Diabetes Mellitus Type 1 be added to the List. After reviewing why this condition was not added in 1997 and 1999, the ‘Reference group argued that Mellitus Type 1 satisfied the criteria for inclusion, as carers need to provide constant care and are required to supervise the child regarding diabetes management. Additionally, the Reference Group argued that adolescents require supervision to prevent some teenagers rejecting diabetes management and thus being at risk of diabetic health related complications’. The Department ‘analysed available Centrelink data on children with insulin dependant diabetes. Of the 4,031 Carer Allowance claims by carers of children with insulin dependant diabetes over the period 2000 to 2003, there were 163 cases rejected on medical grounds. At April 2004, there were 4,613 children with insulin dependant diabetes whose carers received Carer Allowance. However, of these 2,751 (60 per cent) were assessed as eligible for the payment and 1,862 (40 per cent) received a Health Care Card only’. This meant that ‘the impact of adding insulin dependant diabetes to the List would result in an additional potential 2,025 customers at an annual cost of approximately $4.7 million’.

2

3

‘One of the assumptions behind the inclusion of a disability or medical condition on the List of Recognised Disabilities is that they are consistently severe enough to almost always qualify a parent or carer for CA through assessment against the CDAT. The grant and customer figures for insulin dependant diabetes does not support its inclusion on the List as only 60 per cent of customers assessed against the CDAT are qualified for CA payment.’

2005

Diabetes reviewed - See Appendix A Diabetes and the List of Recognised Disabilities

2006

From 1 October 2006, Diabetes Mellitus Type 1 was added to the Carer Allowance (child) List of Recognised Disabilities but only up until the child turned 10 years of age, at this time they were to have their eligibility for Carer Allowance (child) reviewed.

2010

On 1 July 2010, the CDAT used for qualification for Carer Allowance (child) was replaced with the Disability Care Load Assessment (DCLA). This was one of the recommendations of the Carer Payment (child) Review Taskforce Report, February 2008, which was to have a tool that was more focussed on care load rather than functional ability. From this date, the same assessment process is now being used for both Carer Payment and Carer Allowance (child). This was another recommendation of the Report to streamline the assessment and application process and lessen the burden on carers. No changes were made to the List of Recognised Disabilities (the List) (which is a component of the DCLA Determination) or by association to the qualification requirements for Diabetes Mellitus Type 1. Qualification for Carer Allowance (child) for children with insulin dependant diabetes aged under 10 years has not changed since it was first included onto the List in October 2006.

Appendix E – Type 1 Diabetes Mellitus 

Diabetes mellitus is a group of diseases characterised by high blood glucose levels that result from defects in the body's ability to produce and/or use insulin. In Type 1 Diabetes the pancreas stops making insulin, usually as a result of an autoimmune reaction which destroys the insulin-producing beta cells. Without insulin, the body’s cells cannot convert glucose into energy and the body burns its own fats as a substitute. Unless treated with daily injections of insulin, people with Type 1 Diabetes accumulate dangerous chemical substances in their blood from the burning of fat. This can cause a condition known as ketoacidosis. This condition is potentially life threatening if not treated. In the general population, incidence rates of Type 1 Diabetes were twice as high among children aged 10 to 14 years as for those aged up to four years (29.3 per 100,000 compared with 14.3 over the nine year data collection period), with the rate for children aged five to nine years sitting in between (24.1).10 The rate in young people aged 15 to 19 years at diagnosis was 16.8 new cases per 100,000 each year.11 On average, there are around 900 children aged up to 14 years who first start using insulin to treat Type 1 Diabetes each year and around 200 young people aged 15 to 19 years. 12 A person with Type 1 Diabetes cannot regulate their blood sugar levels and manual monitoring of blood sugar levels through finger prick or urine testing and regular insulin injections are required. Type 1 Diabetes is managed with insulin replacement through lifelong insulin injections, a healthy diet and eating plan, regular exercise and constant monitoring of blood glucose levels. The aim of treatment is to keep blood glucose levels as close to 'normal' as possible, between four to six mmol/L. Even with treatment, the majority of people with Type 1 Diabetes are likely to develop complications as a result of long-term elevated blood sugar levels. These include eye damage, kidney and nerve damage and heart disease. For example, a person with Type 1 Diabetes is 40-60% more likely than the general population to develop glaucoma and/or cataracts. The effect of diabetes on each person is variable. Treatment plans, level of care and the time it takes to stabilise the condition vary from person to person and are dependent on the child’s condition, the resilience of the child and carer. The table below provides a guide to the range of care requirements a parent might need to provide for their child with diabetes. For example, one child may only need minimal supervision and a few insulin injections per day, while another could require up to 16 blood glucose checks per day, constant supervision, or high-level assistance from health professionals. Different considerations apply if the child uses an insulin pump.

10 Australian Institute of Health and Welfare 2010. Incidence of Type 1 Diabetes in Australian children 2000–2008. Diabetes series no. 13. Cat. no. CVD 51. Canberra: AIHW. 11 Australian Institute of Health and Welfare 2009. Insulin-treated diabetes in Australia 2000–2007. Diabetes series no. 11. Cat. no. CVD 45.Canberra: AIHW. 12 Based on calculations from table C1 in Incidence of Type 1 Diabetes in Australian children 2000–2008 (AIHW, 2010) and table C4.1 in Insulin-treated diabetes in Australia 2000–2007 (AIHW, 2009).  

1

A pump is a small computerised device that delivers regulated amounts of rapid acting insulin under the skin. It more closely simulates the function of a healthy pancreas, but carries the risk of greater complications. As there is no slow-acting insulin being delivered, complications can set in faster and blood glucose level checks are required more often. The pump syringe and infusion set insertion need to be changed every three days.

ACTIVITY MINIMUM REQUIREMENT MAXIMUM REQUIREMENT

Insulin administration

Injection: 2 times daily (before breakfast,

before bedtime). Pump: Insulin delivered continuously by the

pump throughout the day (basal). Child may calculate and activate bursts of insulin (boluses) to cover meals and high BGL.

Child may take control of monitoring, adjustment doses and record keeping with supervision and guidance from the parent and diabetes team.

Assistance with pump syringe filling and infusion set insertion every 3 days.

Must ensure an insulin pen is always available and carried at all times in case of pump malfunction.

Injection: Up to 6 times daily (before

breakfast, lunch, main evening meal, and bedtime).

Pump: Basal and bolus insulin

adjustments are calculated, programmed and operated by the parent. Correction doses in response to BGL readings programmed into the pump by parent.

Record keeping, analysis and adjustment undertaken by the parent.

Pump syringe and infusion set insertion need to be changed every 3 days or more.

Availability of parent or person to administer rapid acting insulin in the event of pump malfunction or elevated BGL.

Blood Glucose Level monitoring

Minimum of 4 times a day. If child is

on a pump, checks may be done automatically

If the child is on a pump, record can be downloaded and maintained electronically.

At least 1 overnight (11 pm and 3am) per week.

Could occasionally increase to

approx 16 times a day. Manual record of blood glucose

levels must be kept. Additional testing is required

when: o the child is unwell o before, during and after

sport or vigorous exercise o when high or low BGL’s are

suspected o to confirm that BGL’s have

returned to desired range after correction

o trialling new programs, medication or equipment

2

ACTIVITY MINIMUM REQUIREMENT MAXIMUM REQUIREMENT

Diet, Food Planning, Adjusting

Detailed understanding of the

amount and carbohydrate type, protein, fat and sugar content of individual foods.

Food plans can consist of: o Consistent carbohydrate intake

for each day o Understanding of usual carb

intake and usual insulin dose and activity.

o Understanding how much insulin is required to cover one exchange of carbohydrate. Each dose is calculated by the amount they are going to eat in each snack or meal.

o Consideration of a healthy supply of foods to assist with management of the condition.

o A supply of fast acting carbohydrate should be available for times where excess exercise or missed/ delayed meals result in drop in BGL’s.

Once an understanding of the food components and dietary requirements is developed, management may not be significantly greater than catering for a child with out diabetes.

Additional adjustment of food/insulin is required for sports involvement and activity, or exercise, or when the child is ill.

As for the minimum, in addition:

o Food planning and adjustments can become extremely complex at times when the condition is not stable, for example at times of growth (i.e. toddler, teenage years), when commencing pre school or school, when undertaking sport or different exercise programs, when changing insulin or delivery methods i.e. (syringe to pump).

Equipment Calibration and supply

Ensuring adequate supplies of insulin, infusion sets, pump consumables and equipment, syringes and pens are monitored and ordered as required.

Maintenance of blood glucose testing equipment.

As for minimum requirement.

Interaction with diabetes team

Regular contact to ensure ongoing correct management of the condition.

Appointments for diabetes educators, nurse and endocrinologists.

Ongoing monitoring to ensure effective management of the condition, and minimisation of long term effects.

Training, fitting and assistance (may include several overnight stays) of pump to develop individual management plan for pump programming and operation.

3

4

The information in the table has been taken from publications by the Juvenile Diabetes Research Foundation and Diabetes Australia. It is important to recognise that diabetes is highly variable and there will always be exceptional cases. The information should be taken as a guide only. Diabetes also has a measured psychological and social impact on children and adolescents. Fluctuations in blood sugar levels can contribute to alterations in mood and behaviour, while the lack of spontaneity and dependence on parents and medical professionals can cause foster resentment and passivity. The initial diagnosis of diabetes is associated with sadness, anxiety, withdrawal, depression and dependency. While many of these issues will resolve within the first year, failure to adapt following diagnosis is positively correlated with later emotional difficulties. Feelings of anxiety, resentment and guilt are frequently experienced by the child’s immediate family. The rate of psychological disorders in adolescents with Type 1 Diabetes is 36 per cent, approximately double the rate amongst an equivalent peer group. The most common are adjustment disorders, depression, anxiety and eating disorders which usually arise at 3.5 years after diagnosis or in early adolescence. A child with Type 1 Diabetes must follow a regime which is long-term, complex and encroaches on their daily life. Fatigue with routine and poor adherence can be an issue. Evidence suggests that while a child may be assiduous with insulin administration, he or she is likely to neglect self-monitoring of blood glucose levels, diet and recommendations for physical activity. While poor compliance increases the risk of complications, the consequences of non-adherence do not seem to be sufficient to motivate behaviour in children with diabetes.

Appendix F ­ International approaches 

International Approaches

Information obtained from other Commonwealth countries on similar payments to Carer Allowance (child), Carer Supplement and the Child Disability Assistance Payment, made to carers of children with Type 1 Diabetes.

The Department of Work and Pensions, United Kingdom, the Ministry of Social Development, New Zealand, and the Department of Finance, Canada, all have similar payments as those available in Australia. Details are outlined below.

United Kingdom

Cash payments including allowances and entitlements to taxation concessions are part of financial assistance available to carers in the United Kingdom. The care receiver must be in receipt of a government payment as a result of a disability for a carer to qualify for a benefit.

The Disability Living Allowance (DLA) is a tax-free, non means tested social security benefit for people under 65. It may be claimed by the parents of children under 16 with diabetes who have additional needs over and above that of a child of the same age without diabetes or other disabling condition.

There are two parts to DLA – one is for help with personal care and one is to help when someone has mobility problems. Children with diabetes are usually only awarded the part for help with personal care. The rate of Disability Living Allowance depends on the amount of attention and type of help or supervision the children need.

The care component has three rates: Lowest rate (£19.55 per week) – the child has care needs for some time during the

day; Middle rate (£49.30 per week) – the child has care needs for some time during the

day or is liable to get into danger; or the child has care needs for some time during the night;

Highest rate (£73.60 per week) – the child has care needs for some time during the day and night.

A carer who cares for a disabled child for more than 35 hours per week and is in receipt of Disability Living Allowance may be eligible for Carer’s Allowance. Carers who are in full time education with 21 hours of study a week or who earn more than ₤100 per week after tax are not eligible. The weekly rate is ₤55.55. This is reduced if the carer receives certain other benefits; and if the carer receives ₤55.55 or more a week, they cannot receive Carer’s Allowance. Department of Work and Pensions medical advisers are developing a Customer Case Management (CCM) for children. The CCM guidance for children considers insulin injection or insulin pump treatment of Type 1 Diabetes a care need in children who are unable to carry out their own treatment, or who require supervision to carry

1

out their treatment. Children are expected to manage insulin injection treatment and insulin pump treatment substantially for themselves at ages 12 and 14 respectively. Further help for families with disabled children include Disabled Tax Credits (these are dependent on level of income) and can pay up to £53 a week for a disabled child and up to $75 a week if the child is severely disabled.

New Zealand

In New Zealand, financial assistance is available for carers of children with a disability, including diabetes, through Child Disability Allowance (CDA) and Disability Allowance (DA). A carer can receive both CDA and DA for a dependent child.

CDA is a non-taxable, non means tested allowance available to the principal caregiver of a dependent child who has a serious disability. The child must require constant care and attention for at least 12 months because of their disability. Qualification is not based on a specific condition and there is no automatic qualification. The current rate of CDA is $NZ 44.55 per week. A Community Services Card (reduces the cost of some health services and prescriptions) is also provided in the name of each child for whom CDA is paid.

DA provides non-taxable assistance to people who have ongoing, additional costs because of a disability. It is paid to reimburse ongoing related expenses i.e. regular visits to the doctor, pharmaceuticals and travel, it is income tested. A carer may apply on behalf of a child that is financially dependent on that carer. The current rate of DA is $NZ 59.12 per week.

CDA is payable up to when the child turns 18 years, except when they are attending school or a tertiary institution. Some young people with permanent and severe disabilities may qualify for Invalids Benefit when they turn 16 years.

When a caregiver applies for CDA their application is supported with a medical certificate completed by the child’s doctor or specialist. Although all cases must be assessed on their own merits, the guidelines for case managers provide that insulin dependent (type 1) children up to the age of 10 years would generally qualify for CDA if the disability is such that “constant care and attention” is needed. Complications from the disease and other medical disabilities will also be taken into account. Grants made to children over 10 years old with diabetes are subject to annual review.

Data supplied on the number of current Disability Allowance payments made for children with diabetes, as at the end of March 2011 was: 0 to 10 years – 43 recipients; 10 to 15 years – 89 recipients; and 15 years plus – 44 recipients.

Canada

In Canada, at the federal level, the Canadian tax system provides a number of supports for parents or caregivers of infirm or disabled children under 18 years of age including the Disability Tax Credit (DTC) and the Child Disability Benefit (CDB). Additional support is provided to carers by provinces and territories including assistance with the purchase of insulin pumps and blood glucose testing strips.

2

3

The Disability Tax Credit (DTC) is a non-refundable tax credit used to reduce tax payable. A qualified practitioner and the person with the disability or legal representative must complete a Disability Tax Credit Certificate. This certificate seeks information about the duration of the person’s disability and its effects. To qualify for DTC the effects of the disability must cause the person to be restricted all or substantially all of the time, even with therapy and the use of appropriate devices and medication. With the exception of blindness, no specific impairment or condition automatically grants eligibility for the DTC. Eligibility for DTC is determined on a case-by-case basis, depending on the effects of the disability. Anyone with diabetes using insulin whose doctor certifies they spend an average of at least 14 hours per week on activities related to determining and administering insulin may be eligible for the DTC. A child with Type 1 Diabetes may qualify for the DTC on the basis of the effects of the condition. If a child is unable to perform the activities related to the therapy (e.g. monitoring blood glucose levels, preparing and administering the insulin, calibrating necessary equipment, or maintaining a log book of blood glucose levels) because of his or her age, the time spent by the child’s primary caregivers performing and supervising these activities can be counted toward the 14-hour requirement. The DTC is calculated at the lowest personal income tax rate for the taxation year (15 per cent). For the tax year 2011, the DTC amount is $C 7,341, which provides a federal tax reduction of up to $C 1,101. A DTC supplement is also provided for minor children, which provides up to $C 642 in additional tax relief. The Child Disability Benefit (CDB) is a supplement to the Canada Child Tax Benefit. The purpose of the Child Disability Benefit (CDB) is to recognise the special needs of families who care for a minor child (under the age of 18) with a disability who meets the eligibility criteria for the DTC. The CDB provides a maximum of $2,504 per child for the 2011-12 year. In addition, the Medical Expense Tax Credit (METC) provides tax relief for above-average itemised medical or disability-related expenses. A taxpayer may claim the METC in respect of eligible expenses that exceed the lesser of $C 2,052 or three per cent of net income.