A Whole Family Approach – Life without limits

Those who know me well are aware that I am a proud uncle to a wonderful five-year-old boy with Cerebral Palsy. Through him, I’ve seen firsthand how D/deaf, disabled, and neurodiverse children and young people really are at the heart of their families. Unfortunately, I’ve also witnessed how these families often feel let down by the professionals and services meant to support them, leading to a cycle of mistrust and constant advocacy for their child’s rights. This struggle is a key theme in the fifth episode of Stronger Voices Together – A Whole Family Approach: Life without limits.

At John Lyon’s Charity, we stand by the importance of a whole family approach to support D/deaf, disabled, and neurodivergent young people. Families are crucial in helping these young people access opportunities and develop their own interests and learning. By engaging the entire family, we can create an environment of support, growth, and lasting change. We have seen how participation in inclusive activities offers numerous benefits, such as improved relationships, positive well-being, and a sense of empowerment for families. These shared experiences strengthen family bonds and create lasting memories, which should never be underestimated.

Despite the benefits, the options for parents and carers seeking arts and cultural education for their children are still too limited; again I have seen this firsthand with my nephew being excluded from activities due to him not meeting developmental ‘milestones’. Even when opportunities have been identified, parents and carers often need additional confidence to ensure that an activity will be worth the time and effort it takes to prepare their child for participation – particularly when there is no guarantee the activity is something their child will be able to participate in or enjoy.

In this episode of Stronger Voices Together, guests Katie Sparks (Flamingo Chicks) and April Li (Portraits of Grit) share the experiences of their families, including the barriers they face in accessing arts and cultural opportunities.

These challenges, echoed in our Perspectives series, include:

Opportunity: Limited availability of suitable activities and too few directories beyond local authority websites.

Accessibility: Physical and logistical difficulties in accessing events.

Availability: Timing and frequency of activities not aligning with family schedules, including conflicts with appointments and caring responsibilities.

Affordability: High costs associated with many activities which are difficult to prioritise alongside stretched family budgets.

Through our A New Perspective initiative, we surveyed arts and culture organisations to assess the clarity and accessibility of information about their inclusive offerings. We found that over half of the surveyed websites did not clearly identify opportunities for D/deaf, disabled, and neurodivergent young people, highlighting the difficulty families face in finding available opportunities. In some cases where these opportunities do exist, they are not being clearly advertised which is an unnecessary barrier for families, and as such the Charity is advocating for organisations to develop a shared and constant approach to advertising inclusive opportunities.

John Lyon’s Charity, through the Stronger Voices Together podcast series and the A New Perspective initiative, calls for organisations to make their offerings more approachable, accessible, and inclusive for families. Each family is unique, and a one-size-fits-all approach is ineffective. Programmes and activities should be co-produced with families to meet their diverse needs, respecting their individuality and specific circumstances; this involves including families in planning and execution stages, ensuring activities are scheduled at convenient times and locations.

It’s also important to consider the role of siblings of D/deaf, disabled, and neurodiverse young people. Often, siblings take on additional caring responsibilities or miss out on activities due to inconvenient timing or their parent/carers limited capacity to support them to participate. At John Lyon’s Charity, we support organisations working with young carers to ensure they have the same opportunities as their peers and the support needed to balance their additional responsibilities and education. We recognise young carers as a priority group and are actively working to understand the landscape for young people with caring responsibilities across the Charity’s Beneficial Area.

More needs to be done together to create inclusive opportunities so that every child and young person has an equal opportunity to access the highest quality arts and cultural activities. By focusing on a whole family approach, we can make a meaningful difference in the lives of D/deaf, disabled, and neurodiverse and their families. As Katie mentioned in the episode, there is still much more work to be done and many more children to reach.

All five episodes of Stronger Voices Together are now available. We see these conversations as a resource for the sector, from the sector – no matter where an organisation may be on its inclusion journey. Please do tune in so that together, we can all work towards a more inclusive future.