Children with complex health and social care needs aren’t getting the support they need quickly enough because of disagreements over who is responsible for funding their continuing care, according to a new report published by the Children’s Commissioner for Wales.
Children’s continuing care refers to the help children with very complex health needs receive from a range of sources, which may include physical health, mental health, social care and education provision. These services must work together to produce tailored, coherent support for children that meets their needs.
But far too often this doesn’t happen effectively says the Children’s Commissioner, meaning that disagreements between services over funding and provision result in delays in children and their families getting the help they need, or never receiving it at all.
She said a much stronger steer is needed from the Welsh Government to make sure that Regional Partnership Boards, who were established to improve multi-agency care in their region, know how to quickly and fairly co-ordinate care for children with complex needs. This must be supported by a clear funding framework.
Professor Sally Holland said:
“This is a huge issue which is having a terrible impact on some of our most vulnerable children, children who need specialist, urgent help.
“I know that budgets are tight across our public services, and so I understand the desire to protect those budgets, but unless we see real improvement in this area, children will keep missing out on the care they’re entitled to.
“When I meet with the seven Regional Partnership Boards, who should be ensuring that integrated care is delivered in their area, they all acknowledge that this is an issue, and that current practice is simply not working. It takes too long for health boards and local authorities to reach agreements about funding, which leaves children and their families without the support they need. It is quite unusual that regional service providers would want stronger national guidance from the Government on how to allocate their funding, but they do – they know that at the moment, families are being failed.’
The issues raised in the report affect children with a wide range of needs, and receiving care in a range of settings, including children living at home with families, in residential care, and receiving end of life care.
Commenting on the report, Chief Executive of Tŷ Gobaith children’s hospice, Andy Goldsmith said:
“We welcome the publication of this report – which shines a light on issues all-too familiar to Tŷ Gobaith and Tŷ Hafan. We routinely witness agencies literally fighting over the heads of some of the most vulnerable children and their families, denying financial responsibility for their care and leaving families without support.
“Tŷ Gobaith and Tŷ Hafan are working to improve our own engagement with Wales’ Regional Partnership Boards, and hope the continued move to more integrated working and funding arrangements will bring about real-term benefits to children with complex health and medical needs, and their families. We need a sustainable funding solution to the issues around respite care, and this can only come through an integrated, regional approach that values both health and social care on an equal footing.”
The call comes as part of a new report by the Children’s Commissioner, analysing the progress Welsh regions are making on multi-agency care for children and young people.
It also found that:
- Children are very commonly told across Wales that they’ve come to the wrong place when they ask for help
- Waiting times for an assessment for a neurodevelopmental condition (for children with suspected Autism, ADHD and other similar conditions) are extremely long, and in the meantime children and their families can receive very little if any support
- Most safe accommodation for children and young people with complex needs only provides short-term support. More long-term provision is needed.
The report also found several positive examples of work across Wales’ 7 Regional Partnership Boards, including:
- Some Regional Partnership Boards have plans for new drop-in centres for children experiencing mental health crises, and making their crisis teams more accessible
- Every Regional Partnership Board how has a group dedicated to children’s issues
- Most Regional Partnership Boards have new systems for supporting children with learning disabilities who are making the transition from children’s to adult services
- Every Regional Partnership Board now has a plan for taking a No Wrong Door approach, where young people get the help they need wherever they ask for it, and aren’t told that they’ve knocked on the ‘wrong door’