In this issue, we introduce you to a place in the community started by parents' love for their children.
Photographs: Team William / Mindsteps
Text: Michaela Medveďová / Sara R. Newell
For our May issue, we talked to Nina Reffstrup, one of the mothers who established the parent-driven institution Mindsteps.
Mindsteps is open to families with a child or young adult with a disability. It consists of two training centres, specially designed youth education (STU), and a newly-opened activity centre.
Discovering home training
In 2000, Nina gave birth to a child with cerebral palsy. When her son was two years old, he started in a special needs kindergarten, but it wasn't long before his health started deteriorating. At this point, Nina and her husband started exploring alternative options for helping their son.
They discovered a holistic home training method and quickly realised this was the right option for their son. However, home training methods were not customary in Denmark at the time. "The normal way to go was to put your child in a special needs kindergarten and school. If the child didn't fit in well, there weren't many other answers." Luckily, Nina had experience working with trade unions and was used to lobbying and negotiating with politicians. With a small group of parents in a similar situation, Nina got a bill passed in 2008, ensuring children with disabilities the right to home training. This made it possible for parents to choose home training as an alternative to kindergarten.
Nina explains, "When families start to home train, it's usually impossible for the child to go to kindergarten. Some children can become sick or overstimulated". When Nina and her husband were home training their son at their home, they had a network of other families they used to see occasionally. However, the municipality they lived in kept suggesting that they utilise this group of parents and train together at least once a week. They tried this out and found it exciting and beneficial for the children and their families. "The children were able to participate. They need their home training programme because they are not necessarily social or initiate games and play with other children, but they liked that they were doing the same thing with the other children."
This group of parents decided they would make a training centre where families could meet daily if needed - and that was the start of Mindsteps.
Mindsteps was established in 2010 and is run by a tight-knit little circle consisting of a board of parents and even by Nina's son's godmother, an accountant. Besides fundraising, they also have a foundation that supports them, but they opted out of any public funds very early on, as it would inevitably come with a lot of control from the municipality. "We wanted a place where we could decide what we wanted to do at any given moment without having to check with the municipality and ask permission."
Mindsteps has been based in Herlev for the last 11 years, and a second centre was opened in Horsens in 2019. Today, Mindsteps functions as a foundation for the families that go there - they have a place to meet others and bring their home training programme someplace outside their house. "It has become a community. When you have children with disabilities, you are often isolated from your family and friends that are not in the same situation. Here, you meet people who have decided to go in the same direction for helping their children, which is still very unconventional in Denmark."
Feedback from parents has been overwhelmingly positive - they enjoy having a place to become a part of a community, using the facilities and the equipment needed for their home training methods.
There are 12-14 children enrolled in the Horsens Center, and there are currently 10 children and 6 young adults at the Herlev Center. "When the first group of children turned 18, we started looking around for schools - and found that no schools matched their intellectual needs since they were not behind intellectually. So we created a specially designed youth education (STU) school." However, that only covers three additional years of the young person's education - so they created an activity centre as part of Mindsteps, where young adults can also work in a sheltered environment."
The group of parents behind Mindsteps already achieved a significant change in the Danish special needs education system - filling the gap with home training methods and giving parents the freedom to choose home training if this was what their child needed.
There are specific criteria parents need to live up to to be allowed to home train their children. If a child is granted the option of home training, the municipality comes by twice a year to check on the child's development.
However, there is still a struggle with the lack of awareness about home training. "Every second year, we do a member survey, and in 2019, only 6% of parents were told about home training by their municipality. In 2021, it was only 3%. Awareness needs to change. It is actually required by law that municipalities inform parents that home training is a possibility."
Currently, it's mostly through word of mouth or through Facebook groups that parents find out home training is possible. This hits expat parents more than anybody else, as on top of figuring out the special needs system in a new country, they are often met with a language barrier. Nina shares that she and the other parents behind Mindsteps are often frustrated that there isn't more knowledge about their work. "We get contacted by people studying to be physiotherapists or therapists, and they often wonder why they don't hear about us at school. Disability in Denmark is not talked about very much."
Nina shares that people who want to visit Mindsteps will be welcomed with open arms. She elaborates that politicians are also more than welcome to visit since she and the other parents want to bring more visibility to home training. "Politicians can come here, see what we're doing, and talk to parents and children. It's really effective. Often, when you don't know enough about something, and you're used to things being a certain way, myths and prejudice can start to build up. Politicians can wonder," Why don't they just send their children to our very normal kindergartens?" We always win when people see us - they meet normal parents who just want to do something for their child because they don't thrive in the typical system - and this helps."