How much does it cost a family with a child with special needs to meet the child’s additional needs, how much money should be invested in rehabilitation and technical aids, and what if the financial situation does not allow it to be covered entirely on its own?
“Eternal children”. How much does it cost a family to provide for the additional needs of a child with a severe disabilityKristaps Feldmanis
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Vineta Grigāne-Drande is raising three children with her husband. The average child, Jacob, has had cerebral palsy since birth. Vinet and Jēkabs meet at Latvijas Radio rehabilitation center “Poga” after another lesson, which has so tired the boy that he quickly falls asleep while his mother talks about the costs of a disabled child.
Vineta explains that people who do not raise children with severe disabilities often do not understand why the state should especially support seriously ill children.
“One of the things we have heard about in the field of interest representation in the public sector is: ‘Yes, but if I take my child to hockey, then I pay for the hockey equipment myself. Why are you asking your child to pay for these benefits from the state? ” It is very important to put behind the ears of the public that this is not a story about hockey. It can be played or not played. If a child with a disability does not receive quality rehabilitation, then he or she will most likely never learn to put a spoon in his mouth, go to school or be able to show his intellectual potential, ”explained Vineta.
Namely, there is no choice to buy or not to buy.
Regardless of the family’s financial capabilities, the maintenance of a child with a disability requires huge resources.
Vineta has summed up Jacob’s living expenses by allocating exactly his extra needs, not counting any sweets, clothes, or toys that all children receive.
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“Its absolute cost is made up of three big blocks. One block is a large, large investment, but it is needed once, twice or three times a year. For example, in the case of Jacob, a set of soft orthoses costs 2,500 euros and hard orthoses cost about 3,500 euros. Plus, in the case of Jacob, we also add the botulinum toxin injections we travel to Estonia to the high costs. Together, these three big things make up about 7,200 euros a year, ”said Vineta.
Vineta’s injections are also performed in Latvia, but the methods are different, and in Latvia they do not trust Vineta, because in Estonia the results are much more analyzed and the procedure itself is less painful for Jēkabs.
There are also situations when there is supposed to be help from the local government or the state. But for an amount that turns out to be far too small. For example, orthoses – the state has a procurement, but Vineta points out – currently the purchase price is so disproportionately low that only low-quality accessories can be purchased.
Continuing on the cost, the second block is – the cost of the assistant. This is very important for the family to be able to continue working and dedicate time to the other children. They are difficult to find for the salaries offered to assistants.
“It is for this reason that families are forced to seek additional funding if the assistant is from the sidelines in order to cover those expenses.
In most cases, it can’t be found, and that’s the sad story of Mom becoming an assistant. Analyzing together, its costs differ for each family, but they are also several hundred euros, closer to 1000 euros, which the family must cover from its own funding. Of course, part of this money can be obtained from the state through the services of a funded assistant, but as I say and I have not shyly said in the Saeima that, unfortunately, I am also an illegal employer, because I cannot afford to pay all social guarantees for my assistant, which he should receive as an employee, ”admits Vineta.
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The third cost block is dedicated to rehabilitation. The various procedures needed to help children with severe disabilities learn to live more independently.
The cost here is about 200 euros a week. This includes two physiotherapy and two occupational therapy sessions, as well as an audiologist or micrologist visit and music therapy.
Vineta Grigāne-Drande pointed out that there are also services where you have to wait in line with everyone within the framework of state support. Also with those children who perform the procedures, but for whom postponing and waiting for them cannot have such a significant impact on the quality of life in the future.
The state also offers intensive rehabilitation courses, but Grigāne-Drande emphasized that their amount is insufficient and covers only a small number of days a year.
Charity organizations, such as Ziedot.lv, provide great help to Jēkabs. In total, it provided help to children in the amount of 1.058 million euros last year. Paid various rehabilitations, transport expenses, orthoses, orthopedics, examinations, surgeries, horse therapy and dolphin therapy, as well as a number of other services – such that parents would otherwise have to cover from their own pockets.
Ziedot.lv manager Rūta Dimanta explained – families with children with severe functional disorders ask for and also receive various types of support.
“We have a special assistant program, where once a week a paid person goes for eight hours and helps to take care of the child. Then the parents can leave the house. It is, of course, a drop in the ocean, but it is an extensive program. Then there is treatment, rehabilitation, technical aids, special food, special equipment for the house, beds, ”Dimanta listed.
There are often cases when the assistance provided by a state or local government is insufficient.
Even then, the parents ask for support. For example, when adapting a home, the available support is not enough and the rest is covered by Ziedot.lv. It should be understood that raising a child with severe disabilities means providing support for all daily activities that requires additional resources.
“If you need transport, a healthy child can be put in the car and taken away, but a seriously ill child needs a special car seat, a special lift. If a healthy child should go to 10 physiotherapies once a year and the state pays for it, then a sick child needs physiotherapy twice a week. And if the state pays 10 times, then the rest of the weeks have to pay for it. And if one physiotherapy costs from 20 to 30 euros, then what are the amounts. Medications are also those that are reimbursed and those that are less reimbursed.
A seriously ill child sooner or later leads the family into poverty, ”admitted Dimanta
Both Vineta Grigāne-Drande and several other families addressed during the production of the “Eternal Children” series emphasize that they are not asking for money, but for appropriate, accessible and flexible services to be used to enable a child with severe disabilities to learn things. which are self-evident to the general public, and it must be understood that procedures and aids cannot be expected.
They are needed immediately – with the child’s development.
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