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My advice and advocacy service (Help at Hand) intervenes to support children with disabilities who are living with their families, as well as those who are in care or leaving care. Some key issues the Help at Hand team sees are problems with children’s housing, difficulties accessing community resources or appropriate education, and challenges for children moving on to adult services. Often the obstacles come down to a lack of clarity between services over funding and responsibility, and limitations on resources generally, which lead to children’s needs not being kept central to decision making and service provision.

The examples below illustrate some of these difficulties and how the team can and does help children on a daily basis. All names have been changed to protect the children’s anonymity.

Help at Hand was contacted by parents who were living with their disabled children in an overcrowded property, with severe disrepair and mice.

The children had mobility aids (wheelchairs and walking frames) which they were not able to use in the house. They were supported by the Children with Disabilities Team and their accommodation was provided by the local authority’s Housing Service, but they had not been moved, despite both services being aware of the situation.

This situation was truly shocking and I personally wrote to the Head of Housing and Director of Children’s Services twice, initially asking them to cooperate in moving the family and then following up when progress stalled. This led to the services working together to reassess the children’s housing needs, and the family were placed in the highest band on the social housing register, prioritising them for a move to suitable adapted accommodation.

Linda was a looked after child who was living in a hospital rehabilitation centre following a brain injury.

She had an independent advocate provided by the hospital, who contacted Help at Hand following ongoing delays from Children’s Social Care in arranging suitable accommodation, which was delaying Linda’ discharge. The team worked closely with the advocate to ensure Linda could express her views and then contacted Children’s Social Care to request a clear plan for her accommodation and care, taking her wishes into account. Linda wanted to live with a trusted relative but the Housing and Children’s Social Care service were initially reluctant to fund adaptations to the property. After continued involvement from Help at Hand, and a formal complaint from the advocate, both services accepted that this was the right plan for Linda, and worked together to make the arrangements, which was a huge relief to her.

Amir is a looked after child who has a physical disability which limits his mobility.

He also experiences challenges with his mental health due to past trauma. He was close to reaching 18 when he contacted Help at Hand for support because his accommodation provider had given notice and the Children’s Social Care team had told him he would be moved the next day. He was not given any choice over the move and his social worker did not accompany him, even though he was unfamiliar with the new area. When he arrived, he found out that the accommodation had stairs, which meant he couldn’t easily access all the facilities. It was also a long way from his friends, college, and health professionals. Help at Hand intervened to raise these issues with the Children’s Social Care manager, as well as ensuring Amir was provided with an independent advocate. When this did not have the impact they hoped for, I wrote to the Director of Children’s Services to raise my concerns. Amir was ultimately moved to more suitable accommodation back in his home area and was supported by his advocate to make a formal complaint about how he had been treated.

Henry is a care leaver with profound disabilities, meaning he is blind, non- verbal and uses a wheelchair.

However, he is able to communicate with specialist support from his school, independent advocate, and a computer aid. He lived with long-term foster carers for many years and was very happy. As he approached 18, the plan was for him to remain with them, either via a Staying Put arrangement (funded by Children’s Services) or a Shared Lives agreement (funded by the Adult Social Care team). However, a lack of communication between services, confusion about the best arrangement, and disagreements over funding meant that nothing was in place by the time he reached 18. The plan was then changed to propose that Henry moved into a residential care  home, away from his foster family. His advocate contacted Help at Hand for support and the team wrote to the Leaving Care Service and the Adult Social Care team, asking them to work together to do what was in Henry’s best interests. His wishes and feelings were presented by his specialist schoolteachers, foster carers and advocate at the subsequent planning meetings, and the services were ultimately able to work together and agree funding for him to stay with his foster family in the long-term.

There are a lot of challenges for children with physical difficulties, particularly if they are living in families with limited means or are looked after by local authorities in the care system. These children rely so much on good services, and I know there are many excellent, dedicated professionals working tirelessly to support them. However, there are also many problems in the system, often related to funding and resources, which make life more difficult than it should be for these children and their families. Health is a key pillar of my work as Children’s Commissioner and I am determined to engage proactively with Government, the NHS and Social Care, challenging them where necessary, to ensure that all children with disabilities have the high-quality services and support they need to fulfil their potential.

Children, parents, and advocates can contact Help at Hand by calling 0800 528 0731, emailing help.team@childrencommissioner.gov.uk, or using our online form: Get in touch.