The payment given to carers tells much about the values of society. Politicians and other decision makers seen oblivious concerning the fact that some carers work both life-long and full-time. The payment is the same (in Finland) for full-timers, for people who work elsewhere, for people on paid sabbaticals and for people who have retired and get a full pension. Some carers get nothing. In some cultures this is called exploitation or slavery.
Let us make two easy calculations:
1. The (monetary) value of the care given to a kid with cognitive disability or autism, ie. the savings for the municipality compared to institutional care as the alternative cost) is more than 240,000€/year based on the costs in 2010. At the same time, the carer loses the same amount in lost income and pensions. Together, his or her contribution to society is worth 500,000€ per annum, a sum that is nowhere to be seen, but as health problems and exhaustion for the carer and a rise in life quality for the disabled child/youth/grown up individual. According to estimates abroad (in Aus/Nzl), families with autistic children stand for 85% of the total costs, mainly in form of income lost. They save 1/4M for society and lose 1/4M themselves. At the same time, society does not get their skills, work contribution (elsewhere) or taxes but probably has to pay for sickness costs. These 0.5M angels should be called ”the real business angels of the care industry” and be met as such with good pay for 3 shifts withous pauses. During a career of 50 years, they will save over 25M plus interest on interest and inflation for society. What do they get? A meltdown in their health and 400€/month minus taxes. In Finland. Especially worries about the lives of their dear ones after one’s own death, has a negative impact on the carer’s health. The families do pay a very high price for the negligence and ignorance from the part of society. To this equation, one might add all the time and costs for AAC materials, school materials (AAC), AAC-devices, apps and programs and costs for acquiring these skills and for educating the professionals in using the skills. There are no materials whatsoever for these kids at school. The carer of a nonverbal autistic kid spends 4-8 hours for each hour invoiced by someone else. All this, society gets for just 400€/month. Shameful.
2. By doing 25 summer camp days for cognitively disabled children, anyone can make 3.750€ /month. Add a few more days and the salary will be over 4.000€. This is the same as the carer’s annual income. Byt working three days, the summer camp assistant makes a month’s salary of carers. They are worth every euro. The problem is real for the carers, though. They pay the full price everywhere as they are neither unemployed nor senior citizens. A bus ticket to town costs more that the gross income for one day. Thus, one might ask: should the carers work as summer camp personnel, making two years worth of income in some weeks by putting the child into an institution or another summer camp for the duration? That would enhance the level of skills and experience among the present assistants and cause costs for the public sector. However. the carers have too high a morale to do so.
We have fought for proper payment for the assistants, for proper work conditions, too. We will go on doing so. It’s not a fight between the groups working with autistic children. At the same time, something needs to be done for the life-long, full-day carers.
Are the decision makers aware of the situation? How do they sleep at night? It’s time for payment related to the individual work load, not just based on care load. And it is definitely about time for better pay for all the carers.