For Maarit Aalto, services for people with disabilities cannot exclude support to their family members. She spent a great deal of her time working with families of people with disabilities. She saw the evolution of services for people with disabilities in Finland. Maarit eventually went on to coordinate projects that involved families of people with disabilities to improve the quality of services for people with disabilities. Read through our conversation with her as she shares her experience of family cooperation with service providers. Maarit will also be speaking at our Turin conference this October on how professionals, persons with disabilities, and family members can co-create services that are more inclusive.

When you started working with families of people with disabilities, what obstacles did you face?

Maarit: The day a parent received the news of their child having a disability, their homes were filled with different professionals. Parents complained about this often. They wanted support but their homes were often crowded.

On top of this, families of children with disabilities had to become experts in understanding the rules and laws of the social system in their country. This meant researching which services existed, how to apply for them and much more. Back then, we did not have all the information available on the internet. So, parents physically went to offices to just gather information and then they had to start the application process.

Parents needed service providers to help them understand the system of support that their child could receive. In fact, even today, parents need easier access to information to be able to understand the support and care they can get for their children. It blurs the lines between being a family member and being a service provider.

They often seek services that only supported their child because they didn’t think it was important for themselves to be supported. This mentality further led to burn out and mental health issues for family members. However, they also got a lot of knowledge and experience. 

Within your role as a project manager, you championed including families in the project development process. What impact did this have?

Maarit: When we developed projects, we reached out to parents of people with disabilities because they had a lot of knowledge. By this point, their children were over 18 and this meant that they had grasped the support services system well. They knew the system, its strengths and its weaknesses. Without them, a lot of knowledge would be lost.

Sometimes their cooperation came in the form of speaking at a school event on the different challenges families face in the transition of their child to adulthood. They weren’t always fully involved but tried to chip in wherever possible.

Unfortunately, due to their family responsibilities and time constraints, there weren’t a lot of parents who were unable to be directly involved in the implementation of projects. However, the project conclusions always pointed towards the need for the continuous inclusion of families in service provision.

How do you think service provision for people with disabilities and their families will evolve in the coming years?

Maarit: Deinstitutionalisation is the future of Europe. People with disabilities must get a chance at living independently. Alongside this, the growing cooperation between families and professional service providers is very important and I see it evolving more in the future.

When their child with a disability lives in an institution, families grow apart. Families should get a chance to live together and have their own lives. This would lead to development of more services in society for people with disabilities. 

A second issue is the institutionalisation of children with disabilities from a very young age.

This happens because the service provision system still lacks an adequate structure to support families. For many, it’s easier to institutionalise their children with disabilities because of lack of money or support.

When children live with their families, their quality of life is much better than in institutions. This is a great start for their inclusion in society. Service providers should continuously support parents through all stages of their child’s life.

They can then start their own life, have a job and live independently. Another thing I believe will improve in the coming years is emotional support for people with disabilities. This will help them find their own identity and goals in life.