Is a Child with Disabilities the Central Figure in Their Own Services?

Assessing the service needs of a child with disabilities is highly challenging and may involve unforeseen challenges. For the success of these services, involving the child in their own case is as crucial as it would be for an adult client. The child is a part of their family, and sometimes there may be conflicting needs within the family itself.

Various methods exist for gathering the opinions of children with disabilities. The realization of the child's inclusiveness is influenced by the attitudes and communication skills of professionals, as well as structural factors. Regional senior social worker Martina Nygård emphasizes that genuine inclusiveness begins with the professional's mindset and that communication is more than just spoken words.

– Professionals need to drop excessive formality when working with children and actively listen to them.  It is easy to forget to provide children with sufficient information about the matters that affect them, thus hindering their ability to form their own opinions. 

Methods designed for children in general are also suitable when working with children with disabilities. Engaging with children may involve sitting on the floor, playing games, drawing, and other playful activities. 

– This may not always be what adults expect. However, that does not make it any less important. Children need information and the chance to process their thoughts independently in order to participate meaningfully, Nygård states.  

Structural factors also present challenges to assessing a child's service needs and ensuring their inclusivity. For example, there is no clear, practical definition for ‘inclusiveness’ in social work. Different social workers understand it in very different ways. What constitutes adequate inclusiveness for a child? And for a child with disabilities? 

– When it comes to children, disability social work requires time. It requires a genuine understanding of the child's situation so that their services and options can be explained to them in a very concrete way that enables the child to make informed choices. This approach may lead to the child choosing something else than what the parents might hope for. In such cases, it is necessary to consider who is the main character in the situation, Nygård reflects.

The needs of a child, their parents, and the family can differ, and these situations require careful consideration. Do social workers perceive children with disabilities as independent actors?  Is the child the central figure, a part of the family, or an extension of their parents? 

– Yes to all. We have to consider all of these perspectives when determining the child's service needs. The extent to which parents’ desires should influence decisions is a relevant question. Are the services provided to meet the needs of the child or the parents? Do the services support the entire family? More importantly, can we see the child beyond the disability?

Children with disabilities have the capability to express their own views, but this requires professionals who are equipped and willing to engage them. Yet, entrenched structures and traditional operational models often act as barriers. Nygård notes that it’s usually up to families to decide whether to accept services, leading to scenarios where children receive the services specifically chosen and approved by their parents. In this process, the child’s opinions may be neglected. Assessments might focus more on the parents’ ability to cope, rather than starting from the child’s own needs. Moreover, there's a longstanding notion in disability social work that a disability automatically qualifies one for certain services. 

– This mindset is problematic. Services are not assigned in a formulaic manner based on diagnoses or functional abilities alone. Instead, the process should start from the individual needs of each client. The traditional way of thinking still has a strong foothold within clients of social and health care services. Are we asking children what kind of support they want, not just what their parents require assistance with?

The ethical conflicts within disability social work add a layer of complexity to the process of assessing service needs. From the parents’ perspective, involving children in difficult conversations may be stressful for the child. However, it is crucial to listen to the child’s perspective. Social workers must consider how to create a calm environment, safeguard the child during discussions about parental coping, and evaluate services without side-lining the child's needs.

– Looking ahead, disability social work should evolve towards a more child-centric model, which emphasizes the understanding of each child’s unique needs. This is essential to ensure the effective inclusion of children with disabilities, Nygård concludes.

For further reading: Martina Nygård, in collaboration with Heli Ronimus, has previously discussed child inclusivity in social work. Their work is featured in the publication Vammaisuus ja lapsen oikeudet - Lapsen elämää vamman kanssa (“Disability and Children’s Rights - Life with a Disability”), published by the Office of the Ombudsperson for Children. The publication can be accessed here: Vammaisuus ja lapsen oikeudet (valtioneuvosto.fi)(external link)