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Advocacy work

HeartKids are trusted by millions of people impacted by CoHD across Australia to be their voice, influencing policy, improving best practice and raising awareness of the condition.

HeartKids Advocacy Priorities

HeartKids National Advocacy Strategy focuses on raising awareness and seeking funding and spotlights the telling of the stories of those with lived experience of CoHD. Current advocacy priorities include:

  • Access to support funding
  • Access to social, psychological and allied health support
  • Bereavement support
  • Transition from pediatric to adult care
  • Travel for care

Access to support funding

HeartKids families and patients identified lack of access to funding and inconsistencies in access to supportive funding as a limitation of the current system. Consistently, families mentioned that parking at most of the hospitals was expensive and a substantial financial drain given the number of times they were required to visit hospitals. This and other matters have created a financial hardship for people impacted by CoHD and their families.

HeartKids is calling on the government to ensure people impacted by CoHD and their families have access to the National Disability Insurance Scheme (NDIS) and if appropriate, Health Care Cards and Carers Benefits. Families impacted by CoHD report varying degrees of support and these forms of financial assistance are not universally available to all families, with an ad-hoc assessment of need appearing to be the norm.

Access to social, psychological and allied health support

Given that is has only been relatively recently that the neuro-developmental aspects of CoHD have begun to be investigated in-depth, many families have been coping with brain injuries and psychological and psychosocial conditions with very little support. In many cases, one parent was not able to work, as the child with CoHD required additional care.

HeartKids is advocating to government for further support for early intervention programs for those with neurodevelopment delay, and currently have pilot programs running in South Australia.

Bereavement support for family and friends

Lack of bereavement support for people after the death of someone with CoHD was identified in research as a major area for increased focus. Bereavement support was seen to be particularly difficult for families living outside of the major metropolitan centres.

Whilst HeartKids offers a limited Bereavement Support Program and provides financial assistance to bereaved families there is a need for increased support and resources in this space.

Transition from pediatric to adult care

HeartKids has identified an urgent emerging need to develop supporting health care systems and programs for young people transitioning from paediatric to adult care. There is a need for transition processes to assist young people to understand how to assume responsibility for their own health care, and ease the change to adult care. Teena and adults with CoHD indicated when surveyed that this was not well done currently, and they reported that many adults with CoHD do not participate in appropriate medical follow up. It was also reported that there were limited options for teens to access medical and life insurance, often leading to financial disadvantage.

HeartKids is actively seeking ongoing government support for a national teen transition strategy that puts in place age specific population health strategies that engage young people and support them on their journey into adulthood.

Travel for care

People impacted by CoHD from rural and remote communities report many examples of the difficulties associated with the need to travel for health services. The issues included: lack of sufficient funding to support travel (airfares, taxis, petrol etc.), need for financial support for child care for siblings, the cost of food while away from home, the lack of visitors when in hospital away from their community, the lack of access to affordable accommodation and inconvenience of travel when surgery is cancelled.

Consistent with the recommendation of the National Health and Medical Research Council there is a need for the introduction of national standards for interstate travel for health care. This should include reimbursement for travel by car and include a formula that factors in fluctuations in the price of petrol.

To this end HeartKids is championing this issue with State and Federal governments to ensure funding is available to assist families, particularly those in rural and remote communities to access appropriate levels of assistance. We are also advocating that in the event of surgery being cancelled due to no fault of the patient then the full cost of travel and lost income be fully reimbursed for all families impacted by CoHD.

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