Most carers work full time and for life as carers of their disabled children. These parents are actively mariginalised from society, by society. They work until they drop. The municipalities coldly count on the families not having the energy to process and that they fill in all the gaps when others abandon the child.
The carers who work full time, and for life, and who do not have a salary or a pension, need a salary for the work as carers. The worth of their work compared to institutional fees is > 240,000€ a year which would lead to break-even at Epiphany for the carer. On January 7, society starts exploiting the full-time carers (in Finland). There must be a solutuion between these two extremes. The carers pay a high price also in health problems and by income losses for their mandatory volunteering job. We suggest a double assistant’s pay.
Many carers have not had a day off, not even in 10-15 years. They are riddened of their right to an adult life. They pay for things in full and are treated as paria. If there is a day off, it is not 24 but 7-8 hours long. The three days off a month granted by law (but not applied in reality) may not be added together so that one might get a week off. Few get days off and municipalities even cut the 400€ taxable income of the full time, life long carers.
Often, municipalities give up even trying to find solutions and services, yet they stick to their more or less categoric ”no” to carers acting as paid assistants. Able carers, skilled in AAC and the curricula, may neither get a small salary for their work nor may they (in practice) work elsewhere. Not even when a carer is forced to act as the substitute when schools or vacation clubs are not able to do the work, is a salary or even a higher allowance paid. Ordinary common sense should be used in the public sector. Offer the disabled the services he/she needs or at least a creative Plan B!