Families fighting back
The Phillips family are fighters. And winners.
Indy was born with Rett’s syndrome, a cruel genetic disease that can cause physical deformities, seizures and life threatening cardiac arrest. When she was first diagnosed with the disease, Doctors said that Indy would not survive her childhood.
Instead of accepting a life of disability, Michael and Noelia insisted their child have as normal a childhood as possible.
Indy is cared for at home, looks after her horse on the family farm and attends a special development school 4 days a week. With every hospital admission Indy has fought hard to recover.
Giving up is not an option.
Until now, funding for Indy’s care has come from the State Government body, the Department of Human Services.
The funding program is called an Individual Support Package. It supplied a limited sum of money to be spend on carers to assist with general living supports for people with disabilities.
It does not however, supply money for qualified nurses to provide the medical care necessary to keep people away from costly emergency hospital visits.
The presumption in this bureaucratic funding model is that people with disabilities are:
- Clones with identical medical needs
- Having a disability always means you are ‘medically stable’
- If you are medically unstable, you are better off in the back of an ambulance after you have collapsed, rather than being managed at home by qualified nurses who can prevent deteriation.
The bureaucratic Catch 22.
Michael eventually found a local Registered Nurse called Kris, who was prepared to work part time, for a carers wage. Kris has now been with the family for 4 years.
Michael and his wife have been alternating taking turns caring for Indy with working paid jobs to support the family, They run the farm and try to remain as self sufficient as possible.
‘Make the best of what you are given and ignore what you can’t fix’ is Michael Phillip’s motto.
Indy was still ending up in hospital after sizures. In September of 2015, a hospital nurse referred the Phillips family about a new service called Intensive Care at Home.
This company keeps unwell people in the community, away from expensive hospitals and in the comfort of their own homes.
It’s founder is Patrik Hutzel, a Critical Care Trained Nurse. Patrik has previously worked in a similar nursing service in Germany. When he moved to Australia in 2005, Patrik decided Australians with disabilities would really benefit from this service.
Germans have the legal right to receive their medical treatment at home, if it can be delivered this way. German health insurance companies are funded by taxes. However they all have to compete for customers, and if Germans don’t like their insurance plan, they simply move to another one. This makes German health insurers competitive and response to their customers needs. German health insurers are also financially responsible for the overall costs of treatments, both in and out of hospital. This means that long term savings from keeping people out of expensive hospitals are a bonus for them.
In contrast, Australian health services are fragmented across a range of State and Federal Government Departments. They focus on unrelated and short-term goals. Communication between Departments is very poor. Financial costs of services purchased are rarely a consideration.
And the tax paying public have no way to influence the way their medical treatments are delivered.
“Wouldn’t it be better to give Indy and her family full time trained nurses, and keep her out of hospital Emergency Departments?”
When Patrik heard about Michaels situation he offered a flexible solution. His company worked with Kris and provided limited hours of Intensive Care Nursing. Patrik also closely monitored Indy’s hospital admissions, to see if they could be prevented.
At the end of August 2017, Indy was admitted to hospital with aspiration pneumonia after a seizure.
Patrik and Michael then approached the health department for an increase in funding for his service. They had extensive documentation including all the paperwork from Indy’s prior hospital admissions and medical reports.
The bureaucrates relented. Funding for the Intensive Care at Home nursing service providing 20 hours a day, was granted in September 2017.
When Michael heard the news when he was at the Royal Childrens with Indy. He and wife burst into tears with relief.
The family had a chance to relax, knowing that Indy was finally being cared for by professional staff.
However, this good news was not to last.
The National Disability Insurance Scheme (NDIS) was one of Labor Prime Minister Julia Gillard’s most important policies, claiming to provide permanent Federal funding to people with disabilities.
The legislation was passed in November 2013 and in 2016 it began to be implemented across Australia, region by region. The ongoing cost to the Australian tax payers is expected to be 22 billion a year. The scheme has been heralded as improving the ‘quality of life and social participation for people with disabilities’.
However, the National Disability Support Team left out one essential detail. Funding for nurses.
Michael only became aware of this detail when the State Health Department began to discuss his to transition from his State Government funding plan to the new Federally funded NDIS.
Concerned about his daughter losing her Intensive Care Nursing service, Michael had a meeting in November 2017 with the Department of Human Services intensive support team.
Despite Michael’s concerns, the State Health Department signed off on the new package on the 28th December 2017. From their point of view, Indy’s care would now be funded by the Federal NDIS.
Michael refused to accept the proposal.
He knew that Indy would die without ongoing and qualified nursing care. And when it comes to his daughters welfare, Michael Phillips refuses to back down.
On Thursday 8th of January 2018 the State Health Department rang to say that Indy’s funding would be cut in ten days time, on the 18th of January.
Michael was told that he had no option but to accept the NDIS Federal package.
The bureaucrates expressed sympathy and arranged a meeting on Monday 12th January to discuss this.
At 6.30 that evening, Indy had a seizure followed by vomiting and aspiration. An ambulance was called but she deteriorated into respiratory, then cardiac arrest. An air ambulance, two micas and an air ambulance was called. She was flown to the Royal Children’s Hospital and admitted from Emergency straight to ICU.
While Indy was fighting for her life in the Intensive Care Unit of the Royal Children’s Hospital, Michael fought to tell her story. While knowing it would anger the State Health Department, he contacted lawyers, the Herald Sun, the Victorian Ombudsman and Melina Bath-MLC, member regional member for Eastern Victoria with the Nationals.
The response was immediate.
The State Minister for Disability Martin Foley rang Michael on the 13th of February. He apologised for what the Phillips family had been through and gave a verbal guarantee that Indy’s nursing care would be covered, no matter what shortfalls existed with Government funding. This guarantee is now in writing.
Michael received an email on the same day from Sharon Fisher, the Director of the South Division of Gippsland. She advised him that the current funding would remain in place, while the Department continues to work with him regarding Indy’s care.
Indy’s story was published on Wednesday 14th of February 2018 in the Herald Sun.
Michael feels as though his daughter is being treated as a burden to be got rid of. When he asked State Government bureaucrates how these problems has occurred, some privately suggested that the NDIS may have been pushed through too quickly.
Michael’s point is that behind Government statistics is someone’s life.
“In the private sector wages are linked to outcomes. People are open about problems and expect things to be resolved, at an acceptable price. If you do a bad job, you lose your job.”
Michael’s work history is supervising building contractors in Eastern Victoria. Problems on building sites ended up on his desk. If something was broken, it had to be fixed, immediately.
In Michael’s experience of the health industry, there is no sense of urgency about solving problems. Yet people’s lives are at stake.
Health bureaucrats are able to receive a good wage and excellent conditions, while doing a bad job.
In the public health sector, Michael believes there isn’t a down side for doing a bad job. Meanwhile, the implications of their mistakes affect families for the rest of their lives.
Michael Phillips describes himself as ‘an ordinary father, trying to make people aware and make a difference. He wants to stand up for other people in a similar situation.
He believes that legislation to be changed so that NDIS can cover medical costs. And that health funding should be coordinated and easy to negotiate.
If you would like to get in touch and offer support for Michael, his facebook page is here.
© Wikihospitals March 2018