Many of our member families describe significant difficulties both in getting a social care assessment of their child’s needs relating to their disability, and of the effect of these needs on the family. They reported inappropriate use of child protection procedures and that they were not getting any support as a result of the assessment.

Following our research into their experiences, that showed that social care assessments were focusing on safeguarding, not on the needs of the disabled child; and work carried out with the Gloucestershire social work academy in which social workers say they feel that they don’t have the right training to carry out disability needs assessments, and are worried about using language that causes offence, Parent and Carer Alliance was commissioned by Professor Luke Clements and the School of Law’s Legal Entitlements & Problem-Solving (LEaP) Project at the University of Leeds, to undertake a consultation into Disability Needs Assessments.

The aim was to utilise the experiences and expertise of Parent Carers and their families, and to incorporate their ideas, as to how a needs assessment could be done more effectively and result in better support for families whose children have additional needs.

The process of drafting an alternative disability needs assessment form and process included reviewing all the types of assessment that a family might have to go through when their child(ren) have additional needs and disabilities – benefit forms such as for disability living allowance, personal independence payment; health assessments such as for continuing health care; and assessments for support within education such as education, health and care plans.

Using the child’s day as a means of identifying where needs might arise that need support; all types of questions from the list above were incorporated into the draft form along with questions about the support needed, the difference having suitable support makes, and the risks of harm that arise when such support is not provided, or is arbitrarily restricted.

This was sent out for consultation with our community and with other parent carer support groups around the country. Parent Carers provided their experiences and recommended edits to the form, and the disability needs assessment form was further adapted following this consultation.

One parent carer agreed to be interviewed to provide recommendations for ways in which social workers can have a greater understanding of the needs of families whose children have additional needs and, in particular, how to make disability needs assessments more effective. These were presented to social workers through a learning lunch at Gloucestershire social work academy, and feedback included:

“Thank you for sharing the feedback from parent carers – it offers lots of potential for different learning and development opportunities and resources. It was another great meeting that enabled us to move our ideas forwards into some action” and

“They (the parent carer videos) are really powerful. There are so many important messages within them. I am of the view that we are on the cusp of creating a very innovative approach and that we have the opportunity to create something with meaning and impact.”

This version, as well as parent carer recommendations for guidance for social workers, was presented to national statutory sector leaders for their views to be included, and has now been published as “Draft Guidance – Assessing the Needs of Disabled Children and their Families” published in July 2023 where reference 41 links to the proposed assessment.

The aim of the guidance is to effect change at a government level, and the Alliance contributed to the Department for Education consultation on its proposal to update the 2018 ‘Working Together’ guidance.

Feedback from Professor Luke Clements, Cerebra Professor of Law and Social Justice:

” The Alliance is leading the way in demonstrating how local groups can engage in practical and meaningful conversations with their councils and can be seen as a pilot / demonstration model of how to effect positive change and is playing a vital role in bringing about meaningful change for the hundreds of thousands of families with disabled children. The template form and your work on operationalising it is a tremendous initiative, and it would be great if this could be recognised and adopted widely”.

For more information about the disability needs assessment, please email the Alliance.