Introduction
“If I can’t return to work like this, what will happen to my living expenses?”
“How long will I need to pay for hospital visits and medication?”
“If my parent can no longer work, who will support this child’s life?”
For families supporting a person with a mental disability, financial issues are very real.
I am worried about their physical health.
I want them to recover.
I don’t want to push them too hard.
While thinking this, monthly rent, mortgage payments, food costs, utility bills, and medical expenses do not wait.
If the person’s income decreases, the family sometimes covers the difference.
Family members may also take time off work to accompany them to hospital visits.
Some families have been covering the living expenses of their adult children for years.
And as family members age,
“Will we be able to support both our own retirement funds and this child’s future?”
This anxiety also arises.
Mental disability and financial problems cannot be simply thought of as,
“It will be solved if the person works.”
The severity of symptoms, the hours they can work, and the progress of recovery are different for everyone.
That is precisely why what is needed is not for the person or their family to bear it alone, but to organize income, medical expenses, welfare systems, work styles, and future life one by one.
This time, we will consider the financial anxieties often held by families supporting people with mental disabilities and ways to turn those anxieties into concrete tasks, even if only a little.
1. Financial anxiety due to mental disability is not just about “medical expenses”
When talking about mental disability and money, the first things that come to mind might be hospital visit costs and medication fees.
However, the financial anxiety families face is not limited to that.
The person takes time off work.
Income decreases.
They resign.
They shorten their working hours.
Transportation costs for hospital visits are incurred.
Family members take time off work to accompany them.
Expenditures to supplement daily life, such as eating out or housekeeping services, increase.
These changes may overlap.
Even if each one is a small amount, if it continues for months or years, the impact on the household budget becomes significant.
Therefore,
“How much are the hospital bills?”
It is important not only to look at this, but also to look at
“How has the entire household budget changed due to the illness?”
2. Anxiety about a sudden decrease in income
With mental disabilities, a person who was working until yesterday may need to take a leave of absence from a certain point.
Unable to get up in the morning due to depression.
Strong anxiety arises just by approaching the workplace due to adjustment disorder.
Commuting becomes difficult due to panic disorder.
Interpersonal tasks become a major burden due to social anxiety disorder.
Treatment and rest are needed due to bipolar disorder or schizophrenia, etc.
These states are not something that can be simply said as,
“You can go to work if you try a little harder.”
However, from the perspective of the household budget,
“What will happen to the salary from next month?”
A realistic problem arises.
At this time, it is not unnatural for the family to feel impatient, thinking,
“We will be in trouble if you don’t work soon.”
It is a feeling that arises precisely because there is financial anxiety.
What is important is not to turn that impatience directly into pressure on the person.
3. Taking a leave of absence does not necessarily mean income becomes zero immediately
In the case of people enrolled in certain health insurance plans, such as company employees, if they meet conditions such as being unable to work due to illness or injury and not being able to receive sufficient salary, they may be eligible for an injury and sickness allowance.
The injury and sickness allowance is a system to support life while resting due to illness.
However, it is not a system that
“you can definitely receive if you have a mental illness.”
There are conditions depending on the health insurance you are enrolled in, the period you were off work, the salary payment status, etc.
At the stage when a leave of absence is decided,
Company human resources or general affairs.
The health insurance you are enrolled in.
Counselors at medical institutions.
If you check with these, it will be easier to organize than thinking about income prospects by the family alone.
4. Disability pension is not a “system only for people who are not working”
If life and work continue to be significantly restricted due to a mental disability, you may be able to consider a disability pension.
The disability pension is a public pension system that supports people whose life and work have become restricted due to illness or injury.
What is easily misunderstood here is the way of thinking such as,
“You cannot receive it if you are working”
“You cannot apply unless you have a Mental Disability Health and Welfare Handbook”
In reality, the disability pension has requirements such as the date of the first medical examination and insurance premium payment, and the state of the disability is screened.
It is not a system that is automatically decided just by whether or not you are working.
Conversely, it does not mean that
“you can definitely receive it because you have a mental disability.”
It is important for the family not to judge by themselves, but to consult with appropriate counters such as the pension office.
5. Anxiety about accumulating hospital visit costs
With mental illness, continuous hospital visits may be necessary.
Medical examinations.
Medication.
Psychiatric day care.
Visiting nursing.
Costs vary depending on the treatment content.
Even if the out-of-pocket expense for each time is not large, the family becomes anxious when thinking,
“How many years will this continue?”
For continuous hospital visits to psychiatric clinics, etc., there is a system called medical support for psychiatric outpatient care under the independence support medical system.
For eligible medical care, the out-of-pocket expense is generally 10%, and there may be a monthly upper limit set according to income, etc.
However, there are things that are not eligible, such as hospitalization expenses and medical care unrelated to mental illness.
To avoid the situation of “I didn’t know, so I hadn’t used it for years,” it is important to check with the hospital you visit or the municipal office.
6. There are other systems for hospitalization and high medical expenses
The medical support for psychiatric outpatient care under the independence support medical system is basically a system for outpatient medical care.
Therefore, you need to check other systems in cases such as hospitalization.
Public medical insurance has a high-cost medical expense system, and there is a mechanism to reduce the burden when the out-of-pocket expense paid at medical institutions and pharmacies exceeds a certain upper limit.
The upper limit amount varies depending on age and income.
The system may also be revised.
Therefore, it is important to check the latest system at that time, rather than judging only by information such as,
“The amount I heard before was this.”
7. The problem of families continuing to supplement living expenses
When the person’s income decreases, parents or spouses sometimes supplement living expenses.
At first, I thought, “It’s only for now.”
Half a year passes.
A year passes.
Still unable to work.
Before I knew it, the family was bearing most of the rent, food costs, mobile phone bills, etc.
There are such families.
It is not bad for the family to support.
However, a state where you do not know “how much the family is supplementing every month” is dangerous.
It is also possible that the family’s own savings were gradually depleted, and when they noticed, even their retirement funds had decreased significantly.
First, it is important to check with numbers, not feelings.
8. Try making the household budget visible once
Financial anxiety feels even greater if it remains in a state of “somehow, money is not enough.”
Therefore, try writing down the following once:
The person’s income.
Support from family.
Income such as pensions and allowances.
Rent.
Food costs.
Utility bills.
Communication costs.
Medical expenses.
Transportation costs.
Other expenditures.
Then, problems become concrete, such as “30,000 yen is still missing every month.”
Once it becomes concrete, it becomes easier to connect to the next consultation, such as:
Are there any systems that can be used for income?
Can medical expenses be reduced?
Can support for daily life be used?
Rather than keeping financial anxiety in your head alone, making “what is missing” visible is the first step.
9. It can also affect the family’s employment
Financial anxiety does not necessarily occur only from the person’s income.
For example, if a parent:
Accompanies them to every hospital visit.
Leaves work early every time the person’s physical condition worsens.
Is in charge of all communication with government offices and hospitals.
If this state occurs, it also affects the family’s own way of working.
Reducing working hours.
Refusing promotions.
Giving up on changing jobs.
Quitting work.
If that happens, the entire household’s income will decrease further.
That is why, as touched upon in previous articles, it is important for the financial aspect as well not to concentrate support on just one family member.
10. Reconsider “the family has no choice but to accompany them”
The fact that the person needs support and “the family is in charge of all that support” are not the same.
For example, there is support that can be used depending on the situation, such as:
Medical institutions.
Consultation support.
Visiting nursing.
Disability welfare services.
Employment support.
Local consultation counters.
Which services can be used depends on the person’s condition and the region.
Even so, it is worth consulting to see if there are any methods other than “the family takes time off work and handles everything.”
Protecting the family’s income is also part of long-term life support.
11. Do not think about whether they can work in “zero or 100” terms
Regarding the employment of people with mental disabilities, there are times when people think only in terms of two choices: “work full-time” or “do not work.”
However, in reality, there are options such as:
Short-time work.
Reducing the number of working days.
Adjusting work content.
Using employment transition support.
Using continuous employment support, etc.
Thinking about work styles according to physical condition.
Of course, you should not force them to work just for the reason of “I want you to earn even a little.”
On the other hand, if the person wants to work, there is no need to close the possibility from the beginning by saying “I can’t work because I’m ill.”
It is important to think about a work style that can be continued, not just income.
12. Do not let the person remain unaware of money matters
If parents manage all living expenses, the person may not know:
How much is the rent?
How much is the electricity bill?
How much is my own income?
How much money is used to live for one month?
As a family, you might have the thought of “I don’t want to make them worry.”
However, if you are thinking about future life in the community, it is also important for the person themselves to gradually know their own living expenses.
According to their condition, check together, “This much was needed this month.”
Try paying for what they can pay themselves.
Use necessary support if available.
It is important to increase experience little by little, rather than suddenly throwing the person into all financial management.
13. In cases of addiction, specialized support for financial problems may be necessary
In cases of addiction, financial anxiety can be particularly complex.
For example, there are cases where the person’s behavior and financial problems are linked, such as debt due to gambling, etc.
The family thinks, “Only this time,” and takes over the debt.
After that, a problem occurs again.
The family pays again.
In such a situation, the burden becomes large if the family tries to solve it alone.
Addiction is not a problem that can be explained only by weakness of will.
It is important to consult with medical care, addiction consultation agencies, and, if necessary, specialized agencies regarding law and debt.
14. Anxiety about life after parents pass away cannot be answered only by “how much should I leave behind”
Parents with children with mental disabilities sometimes think, “How much should I leave to this child by the time I die?”
However, the problem of life after parents pass away cannot be solved only by the amount of assets.
The person’s income.
Living expenses needed every month.
Housing.
Public systems that can be used.
Methods of financial management.
Consultation contacts.
Connection with medical and welfare services.
It is necessary to think by combining these things.
It is important not just to leave a lot of money, but to create a “state where they can build their life while consulting with someone, even if their parents are not there.”
15. Do not pass on financial responsibility to siblings
Last time, we covered mental disability and the worries of siblings.
Parents sometimes think,
“When we are gone, my sister will look after the living expenses.”
“It will work out because there is a younger brother.”
However, siblings also have their own lives.
Housing costs.
Child-rearing.
Retirement.
Their own health.
Even if siblings care about the person, you should not make them bear even financial support as a natural duty.
It is necessary to prepare by including public systems and local support, rather than passing on the person’s life only between family members.
16. The more families avoid talking about money, the greater the anxiety becomes
It is difficult to talk about money.
If I tell the person, “Living expenses are costing money,” will I hurt them?
If we talk as a couple, it becomes a fight.
If I talk to siblings, it seems like I will burden them.
Therefore, no one talks.
However, the situation will not change if you do not talk.
Without blaming the person, you can talk in the form of, “I want to check together to continue our current life from now on.”
Talking about the household budget is not “I’m in trouble because you are using money,” but a talk to think together about “how to continue life from now on.”
17. If you are in trouble, you can just look for systems one by one
If many system names are listed, you might feel, “It’s difficult and I don’t understand.”
You do not need to look up everything by the family alone.
For example:
If medical expenses are a burden, to medical institutions or municipalities.
If about disability pension, to the pension office.
If about income during leave of absence for working people, to the workplace or health insurance.
If about disability welfare services, to municipalities or consultation support.
If about troubles in overall life, to disability consultation support projects, etc.
There is a way to think about consultation contacts separately.
Even if the first counter is different, you may be guided to the necessary agencies.
You can start from conveying “what you are troubled by,” rather than “consulting after remembering all the systems.”
18. Financial anxiety felt as a person with a visual impairment
I am not a person with a mental disability.
I have a visual impairment and live while using a guide dog, VoiceOver, and support from people.
In a life with a disability, there are costs and support problems that cannot be solved simply by the person’s own efforts.
And depending on whether you know the necessary systems, the burden on life can change.
From that experience, what I feel is,
“Using a system is not proof that you are not living on your own.”
Using necessary support is one of the methods to continue living.
The support needed for mental disability and visual impairment is different.
Even so, I think the way of thinking of using public systems and social support, without trying to solve everything with the financial power of only the person or family, is commonly important.
Summary
The financial anxiety faced by families supporting people with mental disabilities is not just one problem of “medical expenses cost money.”
Income decrease due to the person’s leave of absence or resignation.
Supplementing living expenses by the family.
Continuing hospital visit costs.
Impact on employment due to family accompaniment.
Future housing.
Living expenses after parents pass away.
Burden on siblings.
Various problems are overlapping.
That is why the way of thinking of “it will be solved if the person works soon” is not enough.
First, make the current household budget visible.
How much income is there?
What is needed and how much?
How much is the family supplementing?
And check if there are systems that can be used according to the person’s situation, such as:
Injury and sickness allowance.
Disability pension.
Independence support medical care.
High-cost medical expense system.
Disability welfare services.
Employment support.
Not everything can be used.
There are also conditions.
That is why it is important not to judge by the family alone, but to consult with specialized counters.
And above all, do not turn financial anxiety into holding the person responsible.
The fact that there is a period when they cannot work due to mental disability is not the person’s laziness.
The fact that the family worries about future money is not because they lack love.
The person has their own suffering, and the family has their own realistic anxiety.
Instead of making either one endure, think together about how to continue life while using systems and support.
Without relying only on the family’s savings or sacrifices, those who need it connect to the necessary systems.
In order for people with mental disabilities to continue living in the community, support for the entire life, including the financial aspect, is necessary, not just support for the heart.
Instead of “it’s a money problem, so I’ll manage it within the family,” being able to think “it’s a life problem, so it’s okay to consult with society.”
I think that leads to a community life and a symbiotic society that can be reassuring for both the person and the family.
Next time, I will explain the family edition of the school non-attendance series, “The importance of supporting each other among parents.”
