We talk a lot about the Health Insurance Fund's funding shortfall and the mandatory health insurance contribution under consideration, but less often do we ask how much of the cost is caused by the system's own dysfunction.

The same is true in education: a poorly explained curriculum decision that limits a young person's opportunities years down the line costs the state more than one thorough conversation at the right time. Money saved in one place will sooner or later show up as an expense somewhere else. That is precisely the question behind both of our stories: Where does the money actually go when no one takes the time to look closely when it matters?

Decisions are made about us in rooms where we ourselves are often absent.

One of us is Diana, who lives with chronic health conditions. The other is Remi, who has a mobility disability and has experienced firsthand how a decision made within the education system can, years later, begin to shape an entire life.

The more we have talked about our experiences, the more we have come to understand that the problem lies in how systems see people — or, more accurately, how rarely they see the whole person. When one system fails, it inevitably affects all the others.

When the system doesn't listen

A chronic illness never begins with a major symptom, but with something small. With a moment when someone does not listen. When a doctor tells you that you are too young to receive a diagnosis or when a symptom is attributed to school-related stress before its actual cause is even identified.

A 16-year-old may be sitting alone in a doctor's office, without a parent by their side. They are expected to understand medical terminology and know the principles of medical ethics; otherwise, they may not know when their rights as a patient are being violated. The experience of not being heard is far more common than people think and often repeats itself visit after visit.

When you live with chronic health conditions, navigating the system can become a full-time job: physical therapy, rehabilitation services, a specialist, a family doctor — four separate rounds of phone calls and easily eight hours a week spent just at appointments. That time comes out of reserves already depleted by illness.

Some of the burden is also purely technical. Every healthcare provider uses its own information system. A family doctor often cannot see a specialist's discharge summary. The patient is then left to relay information between doctors. Many doctors experience the same frustration when they have to make decisions based on information provided by the patient.

Patients do have the right to file a complaint if their care has been inadequate. In practice, however, the process is not designed for the people who have the most contact with the system. It requires energy that most people simply do not have left after everything else. As a result, the feedback system remains largely silent because those with the most to say never get the chance to say it. None of these problems stem from the illness itself, but from the fact that the system was not designed around the people who use it. The constant struggle simply to access care often makes their health worse.

Decisions the effects of which only become clear later

In Estonia, there is a lot of talk about inclusive education and the idea that every child should be able to learn according to their abilities. But does the support being offered help young people move forward in the future or does it actually limit their opportunities?

For a young person with a mobility disability, some careers are already out of reach because of their physical disability. When restrictions resulting from their education are added to that, their options become even narrower — not because of either restriction on its own, but because no one considered how the two would interact. A young person who wants to learn can thus find themselves in a situation where they are offered specialized social care services rather than opportunities to put their abilities to use.

We do not believe that a simplified curriculum is the wrong solution; for many, it is necessary. The problem arises when families do not know which opportunities the decision will open up and which it will close off in the future. The hardest part was realizing that no one explained this when the decision was made.

Young people with special needs do not inhabit a single system

In one system, you have to prove that your limitations are severe enough; in another, decisions are made without explaining their long-term impact. In both, young people are often left on their own and without help.

This compounding of difficulties is a recurring reality in the lives of many young people with special needs. A chronic health condition is a burden on its own and when it is compounded by, for example, ADHD, the two can exacerbate each other. ADHD requires routine, while chronic illness requires flexibility because the body does not behave according to a schedule. You can be deaf and autistic, blind and chronically ill or have both a mobility disability and a learning disability. These conditions form a combination, yet no system takes that combination into account.

Healthcare, education and support services all serve the same person, but too often they operate separately from one another. A doctor sees a diagnosis, a school sees academic performance, Rajaleidja sees an assessment and the social services system sees services. Rarely does anyone see the whole person. The only person who truly knows what is happening across all these systems at once is the young person themselves.

What do young people really need?

We do not believe that the simplified curriculum should be abolished or that all chronic illnesses can be resolved quickly. But we do believe that young people and their families must have the right to make informed decisions.

In healthcare, that would mean acknowledging that the sicker someone is, the more the system demands of them. Very often, no one knows what to do. Even specialists reach the same conclusion. The problem lies in fragmentation, with everyone seeing only their own piece of the puzzle. But a specialist can say, "I don't know" and pass the case on. A young patient does not have that option. It is their body, their life. And so they become the person who actually carries all the information, yet they are often the least trusted party in the entire process.

Trust is critically important because it is at the heart of healthcare, but trust tends to diminish rather than grow, especially among young people. When you do not trust the system, you start withholding information, leave symptoms unmentioned or put off appointments.

In education, informed decision-making means that before decisions with major consequences are made, families and young people must be given an honest explanation of what those decisions will mean not only next year, but five or 10 years down the road.

Cooperation between systems is also important. In complex cases, there could be one person responsible for coordinating the flow of information between systems. You might ask whether that is not the job of a social worker. We have asked that question directly. The answer is no. Perhaps it is a case manager's job? They, too, are constrained by their own system, whether the Unemployment Insurance Fund or rehabilitation services, which require an assessment of a person's capacity for work. That is precisely the trap that recurs in every system. Every door simply opens onto another one: a new appointment, an appeals process, a lawyer, an administrative court.

Young people need to be trusted. Too often, we first have to prove that our concerns, pain and difficulties are real.

In Estonia, special needs are often seen as a burden to be rid of. Would you want to be born again exactly as you are? One of us would say yes without hesitation. The other would hesitate, not out of a desire for illness or disability, but because that experience is part of how they see the world. Neither answer is right or wrong. This entire piece has been about how difficult it is to navigate the system, but do not confuse that with having special needs itself. The system made the journey difficult. Our conditions themselves are not what we would give up.

We are not just people who need a better system. We are a resource. Our experiences provide knowledge and perspectives on life that cannot be acquired in any other way.

The greatest barrier is usually not chronic illness, a mobility disability or a learning disability. The greatest barrier arises when the system fails to see the whole person and their future is shaped without adequate explanation, cooperation and trust. The system's job is not to create new barriers, but to help people overcome them.

We have worked hard to find answers and solutions ourselves because we have had no other choice. But we are here for other young people and they can ask us how things really work. Decision-makers are always welcome to reach out to us as well.

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