In Robert’s life, he has had to deal with the multiple consequences his handicaps bring due to the lifestyle created around them. The financial impact this has had is significant. Taking care of his health has been a burden on his economic well-being since it is being obstructed by bureaucracy as well as his reliance on help with a variety of (daily) obligations.
Unfortunately, not all costs are (easily) reimbursable. Robert struggles with a section of the mental healthcare system in particular since they do not allow him to submit or claim a tax deduction for services he uses because of his conditions. An example of this is the incompleteness of the rules to judge Robert’s situation for Extra Gezinshulp; they mention illness or invalidity but nothing about handicaps, which can be just as impairing as invalidity.
Robert relies on support from freelancers to realize activities that are easy for the average person but (frequently) represent a burden or an immensely overwhelming activity that could put him into an undesirable state psychologically, emotionally, or physically. The importance of these freelancers that fall into "extra costs" is essential in Robert’s world. Still, they also represent a challenge for him since the majority of them are seemingly not considered healthcare costs and are consequently not reimbursable.
To help Robert go through some tasks in his life, he relies on freelancers, given that they are not bound by company rules, policies, or doctrines that are disadvantageous to his situation. A freelancer helps Robert out with requests, whereas an employee of a company would not, even if they wanted to.
In Robert’s words:
“Dutch people are a double-edged sword. They can be the breakthrough you're looking for or the biggest obstacle you have ever seen”.
They have notoriously refused to attend to specific help requests, as if there was an aversion to the challenges that come with giving Robert the help he needs.
Another thing that is not helpful is that all of Robert’s help requests are time-intensive and Dutch salaries are high. This series of things combined makes it unaffordable for Robert to continue without a personalized healthcare budget (PGB). Since Robert is the one financing the help he crucially needs, he has to reach out to freelancers on international freelance platforms that run at a lower, more affordable cost for him.
Robert has a group of freelancers that help him tell his story and piece his ideas into words, which is a struggle for him most of the time. He is appreciative of everything that his team does to help him in various capacities, but he admits to himself that this seemingly non-reimbursable medical cost is a great burden since it has effects on his financial situation. Robert's remote freelancer team has been essential in helping keep his health in check, especially since he suffers from various handicaps that he has talked about in this same blog. Some of the services he requires are:
Virtual assistants play a huge part in Robert’s lifestyle. They help him in different areas and keep him updated on the things happening around him so he can have control of them, preventing him from becoming overwhelmed.
Some of the services he requires from them:
Assistance in the creation of flowcharts of all the legal issues he encountered
To find (local) volunteers to help him out with physical chores by visiting him at home.
To find online jobs that he can do to earn a little bit of extra income, to fund his ongoing reliance on virtual assistants
To reach out to hundreds of Dutch social care workers to find out if any of them would be suitable to become his 'Lifecourse guide'.
Given his heavy reliance on online work, being blocked or banned from online accounts is utterly crippling. Regaining access proves to be a tremendously arduous endeavor that is very time-consuming. To illustrate with a few examples:
Regaining access to AngelList
Regain access to PayPal
Sort out an automation issue in Trello preventing him from automating requesting status updates from freelancers.
This could be a trivial thing for someone whose life is relatively mundane, but given that Robert is highly sensitive, for him to have to deal with certain processes is overwhelming and tiring.
He finds virtual assistants of great help to him when it comes to taking care of various time-consuming tasks, such as:
Getting vaccinations into my vaccination passport
Getting independent client support
Finding a psychotherapist to acquire his long-requested diagnostic procedure
The amount of help required is great, as is the cost of these services, which are often not considered eligible for reimbursement (process).
Aside from virtual assistant services, there are other issues that he cannot handle on his own and must rely on someone else to handle, such as :
Bookkeeping: PPeople who help sort out invoices, enter the invoices into bookkeeping software, find duplicate entries, and remove them.
Robert has multiple sources of income that come to the bookkeeping. Only in the last 5 years has Robert had to administrate different income entries such as WLZ, WMO, the tax office, health insurance, and donations. Robert also has to deal with the expenditures by the social insurance, or SVB, towards institutions that require a payment from him, things that are not reimbursable, and freelance platforms.
As we can observe, the list is huge and it keeps growing. It’s only natural for Robert to require help to manage this, even more when his life condition takes him valuable time.
Software engineers to create automation tools for Robert such as:
Visualizing the Paper Trail
Automated printed attachments into his Google Drive folder
A lot more automation tools for personal use
It is not easy for Robert to execute some tasks, even more so if these tasks require hours, given that Robert does not always have the condition to continue a normal day like the rest of us. Even in today’s life, with all the technology at our hands to make life possible easier, there are still challenges to solve, and it is people in situations like Robert’s that make us realize that. Going from doing to done takes many steps; there are too many fields to enter, taps to go through, and repeating information, which makes software become a labyrinth. This becomes time-consuming and takes hours of Robert's life.
For Robert to recover his sanity and happiness, he wants and wishes to be able to automate his life. He is searching for software to deal with the aspects that have to be done, letting automation deal with it on his behalf and according to how he wants and needs it to be done.
Web designers to help Robert createthe website he has in mind with Noodzakelijk Online. This might look like a non-handicap job, but to him, it was filling up his head with all the things that he wanted to say and explain, but he couldn't create a structured explainer where all the information would come together.
And last but not least, important human resources can create job descriptions as well as policies, procedures, and processes to streamline how things are going so that other freelancers have an easier time onboarding with them.
Another issue for Robert was his tax-deductible declaration. When he was filling it out online, the option “Extra Genzinshulp” wasn’t there. It became difficult to track the deductible as there were no adequate options and this brought tension for him. At some point, he selected the option for "My children," a mistake that still haunts him today. This mistake got him into trouble since it was easy to confirm he had no children and it represented a huge red flag for the tax office, which led to the rejection of the application.
Basically, the reasons why he applied were true, the number included, but the selected option on the form wasn't, and this mistake made years ago still stays till now. One of Robert’s fears is the mistakes made in his past and the unbearable debt he has to pay back, and the filing of the declaration, which consequentially became an issue. Robert then requested a payment plan of one year because legal assessments were still ongoing and would be continued. Robert has multiple disabilities, namely autism, migraine, and C-PTSD, which hinder his execution capacity to such an extent that he is unable to meet deadlines in a timely manner imposed by authorities.
A personalized healthcare budget besides the PGB would allow Robert to lessen the burden of all these costs. Having an option to be able to get a tax deduction for all the services he needs and is currently paying for would be a breath of fresh air for him.
More attention to his case is needed, as is the willingness to establish the proper communication links between authorities and Robert. It takes change and evolution in the way things are currently working for a fair agreement to be made.
A perfect solution in an ideal world would be for him to be heard, to be able to pledge his case, and to be considered for real. to make a change in how things work and to realize that some circumstances need great care and support, since we cannot call Robert’s situation "ideal" or fair.
Robert requires third parties to conduct proper attention to solutions that actually help him improve his quality of life and bring him into a fair situation. There is a problematic loop in the healthcare system and institutions involved in the handling of Robert’s affairs that allows for outrageous things to happen to someone who is trying his best to live a decent life.
For the moment, Robert keeps on dealing with all the stipulations above and is basically relying on himself. He has to endure endless processes where the response is the same at the end of the day and his efforts to get reimbursements are rejected. All of this is because his handicaps are not properly considered by the healthcare system, far from what they are willing to recognize. This also leads to other economic problems and issues with tax authorities, healthcare systems, and institutions that should be there to help him instead of making it more difficult.
For now, Robert keeps on fighting to make a change and financing the help and support he has needed so far in the hopes that he will achieve the aid he needs, improving his quality of life. Justice is yet to be served.