These offers are often canceled during the holidays. Protests are now forming in Lower Austria, those affected are demanding holiday care and hourly relief. “The suffering and need for relief from caring parents is enormous,” says Martin Nagl-Cupal, head of the Institute for Nursing Sciences at the University of Vienna. According to studies, caring parents of minors would feel extremely burdened, but at the same time would receive fewer support services compared to the overall group of caring relatives. “Either there are too few offers or they don’t fit,” says Nagl-Cupal. In addition, there is a high financial burden due to the many deductibles; often one parent – usually the mother – would also reduce work or leave the job entirely because care could not be organized otherwise.
“Our powers are not infinite”
“The love for our children is endless. Our strength is not,” is how an initiative from Lower Austria, which has been campaigning for more family relief and holiday care for children with disabilities for over a year, sums up the excessive demands. There is still a lot of need for development in the state, criticizes Dominique Stiefsohn. She is on the board of the Phelan McDermid Society, a self-help group for relatives of children with the rare disease of the same name, and is also involved in the association of parent groups and organizations such as the Austrian League for Child and Adolescent Health and Lebenshilfe.
She complains that parents of disabled children are currently left to fend for themselves during the holidays. There are only a few offers. “Would anyone come up with the idea of closing the nursing homes for seniors for 15 weeks a year and leaving the relatives alone to care for those affected day and night?” The consequences of the current situation, according to Stiefsohn: The children are “unhappy and lonely” due to the lack of contact with their peers and the mothers, who are mostly responsible for the care and who often have to take on the entire responsibility during this time without a break, are physically and mentally drained due to a lack of recovery phases . Using special care offers is not an alternative. If these exist at all, they are simply not affordable at a cost of 500 euros per week.
Demand for more staff and adequate offers
The initiative therefore calls for better framework conditions from the state. Specifically, enough additional staff is needed so that children with disabilities can take part in general holiday care offers. There must also be adequate offers for children who need one-to-one care. The additional costs should be borne by the state and municipality and not passed on to the parents. Ideally, the existing afternoon care infrastructure could be used for holiday care, where the rooms are tailored to the children’s specific needs and the children already know the staff, according to the suggestion.
But parents who care for their children for decades also need to be relieved of their everyday lives outside of the holidays, the initiative demands. The constantly high level of stress endangers the health of the families of disabled children, and without their care there is a risk of expensive inpatient admission. However, getting mobile relief in Lower Austria is currently “very difficult if not impossible”, as the position paper states – there are simply not enough staff because the state has contracts with too few providers.
Municipalities cannot bear the costs
In both cases, the initiative believes it is the state’s turn; the municipalities simply cannot bear the additional costs on their own. There must also be a legal right for cheap relief offers, as is currently the case in Styria.
When it comes to holiday care, the responsible FPÖ regional councilor Susanne Rosenkranz has recently signaled support; she called the current situation “shameful.” The black-blue coalition’s goal of achieving a balanced budget is challenging, she admitted. However, the austerity plans should not be carried out on the backs of those children and parents who are already having the hardest time.
