For this week’s blog posts we interviewed our second working life representative, Satu from Jaatinen. Jaatinen is an association for families that have children with disabilities. Satu told us how their association took a stand together with Omaishoitajaliitto ry, Pääkaupunkiseudun omaishoitajat ry, Lasten omaishoitajat ry, Kehitysvammatuki 57 ry & Adhd- liitto ry and wrote a commitment (kannanotto) to the city of Helsinki.
When covid-19 started, temporary care facilities were able to take only the most critical clients in and therefore many informal care families lost their statutory days off. The commitment presented that the city would give more support for the informal care families with children by increasing the value and extending the period of validity time of the service vouchers. The city granted the extended time period for the service vouchers.
When talking about what else could be done differently in the field, both of our working life representatives mentioned how one thing they really wish for is a designated social worker who knows the system and is able to give advice on what services and benefits families with special needs are entitled for. Right now, the informal care families have to find everything by themselves because these isn’t any professional or specialist who has all the needed information collected in one place. The first working life representative whom we interviewed, Hanna, said that she wishes that there would be “one person holding all the threads in their hands”.
At the moment, all the different associations and organizations are kind of taking the role of “the professional”. They spread information and awareness, organize different events and contact the ones in power when the families issues are not being recognized. Networking with other organizations is essential. Together they can exert influence in to the society on many levels for instance by giving council directly to the families, make an impact on municipality level by talking with city councils and on national level pointing out faults in the system and working towards fixing them. Great example of this is the commitment mentioned in the first paragraph of this post.
Another thing that both of our interviewees hoped was that the family’s social worker could really take time to get to know the family. At the moment social workers have many clients and not enough time, which obviously isn’t good neither for the worker or the family. Families wish that the social workers wouldn’t change so often and that they would be more available. Satu said that one possible solution to the situation could be statutory dimensioning of the number of client families, like child protection social workers do. This would ensure that the workers have enough time to really familiarize themselves with the client family and have generous knowledge about their needs. Satu emphasized that it would be crucial that the social worker would take care of the entire family’s needs, not just the child’s needs who has a disability or disease.
“The child will do well if the family around them is doing well” -Satu