Healthcare costs can build up notoriously quickly for individuals with handicaps, especially the ones Robert has. With healthcare costs being quite crippling, it is challenging to keep up with the ongoing expenses required for his condition.
Having a handicap is already a burden, and additional obstacles to acquiring help, let alone reimbursement for them, should not be made extra difficult. Although he has PGB-WLZ, the Health Office (Menzis) still has unsaid rules that prevent him from hiring social care workers as needed. This illustrates how the grounds for rejection are not regulated when they should be communicated before giving a verdict on the applications.
These are just some of the handicaps Robert deals with in his life:
His handicaps affect him in a physical, psychological, neurological, and emotional way, and all of them need treatment, which most of the time is expensive. Some treatments are reimbursable yet require a lot of paperwork to process, but there are handicaps for which there is no reimbursement. Excessive bureaucracy is one of the significant problems with laws that are conflictive or obnoxiously absent. As if his situation didn’t exist or fall within the rules, he therefore invalidated his ability to receive any help from them.
Robert has been sidelined by the healthcare sector due to his situation being too complex. He is burdened by many different problems compounding on one another. He can no longer solve them on his own At this point, we cannot ignore the fact that this is not a problem that stems from Robert since too much evidence proves that the system does not take people and their struggles like Robert into account.
Institutions have reinforced laws and changes that have been proven not satisfactory or helpful for people’s lives the way they are needed, and rather than recognizing the situation, these institutions put all the burden on the ones affected by them.
Robert has faced serious obstacles such as being approved for a personalized healthcare budget too little, very too late. He has faced obstacles and threats from the system, which has led him to try and get justice by constantly communicating his issues, but it seems no one is listening.
Some of the situations Robert went or currently is going through are:
Being the victim of healthcare fraud committed behind his back by an ex-team of social care workers
Being shut down by institutions without the opportunity to show any proof of
Being actively ignored, put aside, or actively fought by institutions because his situation doesn’t fall into any common ground, rules, or regulations.
Being made homeless by the joint-forces of the municipality and protected living compromised his well-being, causing severe personal injury.
Not only the process and institutions, but the mentality and perception going on around the issues Robert is presented with are major setbacks to receiving proper help.
Another issue that Robert faces is being excluded from healthcare reimbursements. In his day-to-day and given his life conditions, Robert needs help from multiple people to carry on with tasks that a normal person would be able to do on their own. These are some of the services he relies on by employing virtual assistants to (re)gain his capacity somewhat.
Finding local volunteers to visit him at home to help out with practical requests such as domestic help
Finding a psychotherapist or psychiatrist to get diagnosed with several handicaps
Finding social care workers (life course guides) because he is actively denied independent client support
Getting vaccinations into his vaccination passport to be able to pass customs in China to have access to his girlfriend
Finding jobs that Robert can do to earn extra income to keep funding the ongoing reliance on VAs for various tasks is a job for Robert.
Bookkeeping: aids in the organization of invoices, the entry of invoices into bookkeeping software, and the detection and removal of duplicate entries. Managing the expenses of his healthcare is a daily task on its own.
Archiving helps in sorting out documents, creating logical folder structures, and making sure stories have the right documentation attached to them.
Overcoming bureaucracy by submitting forms and staying in touch with institutions.
He believes that he should be reimbursed since these services and costs are directly correlated to his quality of life given his handicaps and the operational process of healthcare thereof. However, it has been a serious struggle to get the process going, let alone maintain it.
In the Netherlands, healthcare costs that are not covered in any other way might be able to be deducted from income tax. This fiscal deduction possibility sounds like the perfect way out. There are not many or very restrictive rules. However, Robert made a mistake in the past by declaring these costs on his income tax prior to asking for permission. These mistakes were, ironically, made by blindly following the rules on the website which the tax office always promotes. Then the tax inspector deemed these deductions not lawful enough to create a whole mess of a situation.
Learning from his mistakes, he now asks permission upfront because, for some kind of reason, there are additional rules that are not publicly visible but are applicable. For Robert, these experiences have been traumatic in emotional and financial terms. Given the circumstances, Robert has developed a mechanism in which people have to follow his way of gaining 100% certainty; otherwise, he sees the people around him as unreliable and untrustworthy. Not being able to get his costs reimbursed from the fiscal deductions has cost him a good amount of money, running into the tens of thousands by now, which makes his situation very complicated.
Due to the chain of health conditions that Robert suffers from his handicaps, there are treatments that he needs, but, unfortunately, healthcare does not cover some of them. For example:
Swimming sessions for Robert’s upper back problems.
Which have come to a point where multiple petitions have been made to attract attention from the masses around this topic. Below are the links to the current active petitions:
Recognize swimming as a medical solution in “mobility solutions” - Erken zwemmen als medische oplossing in 'mobiliteitsoplossingen'
Put job swimming on the reimbursement list on the advice of the physiotherapist - Zet banenzwemmen op advies van de fysiotherapeut op de vergoedingslijst
The Municipality of Arnhem (WMO) refuses to give the help because the costs are not recognized as a customized provision for mobility solutions, although he is eligible for a deduction for specific health care costs because the back problems cause him to lie flat again (vicious circle), which is immobility and therefore a disability. Still, given the nature of the case, he is unable to receive the help he needs, which also has consequences in that his mobility and day-to-day life are affected.
Robert’s life is limited by his handicaps, which sometimes cannot be fully covered to be treated and cause other health problems for him that are also difficult to attend to or require Robert to get help from others, which he has to afford out of his pocket.
Narcolepsy treatment.
Robert is on treatment with Ayo Pro, which is a form of therapy that helps him improve his energy, mood, and sleep. All of this is done by using blue light to stimulate the eye's retinal ganglion cells with therapy glasses. Robert has been on this treatment for a few months and notices that 40%–50% of the time it has helped him to fight off his tiredness and skip the mandatory naps he usually has to take in order to go on with his day again.
Ayo Pro helps him have enough energy to do things he previously would have had to leave for the next day. In his own experience with the treatment, his vivacity experienced an increase of 20%, something which allows him to do a little more than usual. In general, the impact of this treatment has been positive on his life, but, of course, this does not always work since Robert has multiple moments per week when he feels tired and unable to fight back against the tiredness.
The costs of this treatment are limited to the purchase of the device, which is 250 euros. Robert has taken different routes to be able to pay for it and is trying to get it reimbursed from parties like the health insurance or tax office. All this process is done with the help of freelancers.
Migraine treatment.
Given the intensity and strong impact Robert’s migraines have on his life, he is also in therapy as a way to decrease them. Cefaly, which is an external trigeminal nerve stimulation device (e-TNS), is a migraine treatment that works to treat acute migraine attacks quickly as well as prevent future episodes.
Robert has been on this treatment for 7 years, and it has had a great positive impact on him. It mitigates some of his migraines and helps process information, reducing the impact of his delaying processing information that comes with autism. The effectiveness of the treatment is about 70%–80%, allowing him to defeat a migraine attack in 70% of the cases. The process of this treatment can be painful since it produces a "shock" to Robert’s brain. On medium to high settings, he has to lie down during the treatment process.
Unfortunately, his first device broke down outside of the 5-year warranty period. Robert has to bear the cost of 250 euros for the first device as well as 250 euros for the replacement. The device uses consumables in the form of stickers, which cost 24 euros for a 3-sticker batch. He consumes a batch about every 2 months.
In Robert’s own words about how his life is affected:
“I can say it lowers my quality of life and living standards. It means that certain transitions in and improvements to my life I cannot make”
A solution to these issues would be to ensure reimbursement processes are accessible, complete, inclusive, self-populating with proof the institute already has, and fully automated, especially for people living with disabilities. Robert runs into several obstacles with the current processes of reimbursement and is sabotaged in his capability to reimburse the additional costs he incurs due to his handicaps.
It is important to mention the reliance on freelance services since this helps keep things running from his end. His handicaps and associated costs affect his quality of life greatly. Without the proper support from the healthcare system, all of this represents a financial burden for someone who currently has no wealth of their own and is unable to accumulate wealth except by living from month to month.
Holistic attention to Robert's case is needed to communicate what can be done and improved for the better. Such a thing is not exclusive to him since there are others going through the same, i.e. being crushed by the system's poor capacity to deal with these unique situations. This speaks volumes about how badly the mental healthcare system is organized in general and how humans reliant on this system are paying the ultimate price for it. It's especially concerning for a country such as the Netherlands that likes to pride itself internationally on how good its (mental) healthcare system operates.