Often, families end up becoming primary carers of people with disabilities. They find themselves in situations that are hard to navigate and have limited support. To bring forward their stories, we have launched the 'Empowering Families' campaign. This campaign is inspired by our Turin conference,  Empowering families, enabling self-determination: rethinking support at every life stage.

Each week, we will spotlight people who have shared their personal journeys with us on the importance of extending professional support to all family members of people with disabilities.

This week, we start with the story of a sibling, Inge Volleberg. She is a Researcher and Coordinator at Inclusion Europe, an organisation that represents people with intellectual disabilities and their families across Europe.

Inge Volleberg describes her childhood as that of a glass child. Just like glass, she was strong, but often people saw through her. The comparison to glass is a reality for many siblings who try to be invisible, so their parents can focus more on their child with a disability.   

Inge talks about the joys of growing up with her sister, Esther, who has Down Syndrome, and the difficult moments she faced in her childhood. Read our conversation as she reflects on her childhood and talks about her relationship with her sister.  

Throughout your childhood, what role did you play in Esther’s life? 

Inge: Esther has always been my best friend. We used to play our own games and shared a strong bond as kids. Alongside being her sister and friend, I was also her caregiver.  

However, this support does not refer to physical caregiving like helping her walk up the stairs. I often saw my sister being misunderstood and left out in social settings, so I asked my parents if I could support her. I wanted to make the world around Esther accessible.  

For example, if we went to visit a museum, most of the content was not accessible to Esther. She could not understand the plaques with information under a painting. So, I took it upon myself to become her tour guide and explain everything we were seeing. I drew parallels between what we saw in the museum to the things we had at home.  

When I was a teenager, I would sometimes stay home with Esther while my parents went out and sometimes it was the other way around. As a family, we communicated very well and supported Ester as a team. We had our fair share of challenges, but it was a gift for me to grow up with Esther. 

What kind of support did you wish you had growing up? 

Inge: When I was younger, I would often see my parents and Esther’s service providers sit together and discuss her needs at length. As an adult, I now know why she received more attention. But, as a child, I felt left out.  

I didn’t feel seen by professional service providers. When the support came in, it was either for Esther or my parents.  

There is a risk of siblings feeling overlooked. When parents and service providers are fully focused on the child with a disability, it is natural for their siblings to feel less important. 

Service providers need to see families as a unit, and you can’t leave siblings out of this unit. Siblings are also children and in the midst of their development. They are influenced by the family situation significantly. This is why service providers need to focus on us as well. 

I supported my sister and that was a choice I made. However, for my mental health, I would’ve appreciated professional support. Being able to talk to a professional about what I was going through, would have made a huge difference for me. 

When I was 14 years old, I joined a support group for young caregivers. This was organised by the municipality in the area I grew up in. We would play games, talk and have an opportunity to step out of our caregiving roles for a few hours. I could also easily talk to this group. I felt heard and recognised without having to explain myself too much. I think such groups should exist more, where siblings can talk to each other and get peer support. 

I had to actively look for this, none of Esther’s service providers knew that such groups exist. I constantly felt like I had to find my own support, it was tiring.  

Your sister now lives in a group home. Do you think she can live independently in the future? 

Inge: Esther thinks that she already lives independently. She has a studio apartment with shared spaces and support during the day.

If I view it with my policy glasses, she isn’t fully living independently.  

In the Netherlands, we have a ‘personal budget’ system. Esther receives a certain amount from the government that she uses for a variety of services. Her accommodation and support providers are covered by the same company.

She hands over her whole personal budget to this one company that monopolises all the services. She also pays this company to provide her a job.  

It’s important to note that she doesn’t receive a salary for working at a restaurant. Esther pays to go to this job from her personal budget amount – I think it’s unfair. 

Realistically, there is still a lot of work to be done before to making independent living possible for all people with disabilities. 

How do you think services can improve their support to make independent living a reality? 

Inge: Families are worried about loved ones. Often when their child with a disability enters adulthood, there are two options they have: either live with their parents or live in an institution or group home. Quite frankly, this is not really a choice for families.  

I believe independent living can become a reality when different services are provided by different companies. The monopolisation of all services by one company makes it hard for people with disabilities to have a choice.  

It’s always a grey area. I know the system is not perfect, but I cannot ignore what my sister feels. 

She loves her job and apartment. She wouldn’t change a thing about it. She likes her colleagues and enjoys being useful at the restaurant.  

Yes, we need to move towards inclusive labour markets, diversification of services, but we should not rush to shut down opportunities that already exist without having a better alternative. It needs to be a transition to a more inclusive system.  

As policymakers, we forget that at the end of the day, it’s being part of the community that matters.  

Get to know Inge more at our upcoming conference in Turin! She will share her journey and experience of working in disability rights policies. Know more about our conference.