Report of Experiences of Parent Carers of Disabled Children and Adults Across Wales



Do read this excellent research paper, by Clare Lucignoli, just published:

To learn more about systems-generated trauma,

And to appreciate that LAs cannot be guaranteed to act in a child’s “best interest”.

Note – this research project investigated the experiences of families where education is provided by the state.

Key points include:

• 84% of respondents stated that their child was not receiving an appropriate level of support.

• Only 17% of parents believed the right support was currently in place for their child.

• Over 50% of respondents reported experiences of parent-carer blame by statutory agencies.

• 25% of families reported receiving no funded support despite caring for children with complex needs.

• 84% of those who used formal complaints processes said their complaint did not resolve the issue raised.

• Fear of retaliation, including escalation to safeguarding processes or loss of support, was repeatedly cited as a reason for not requesting help.

These findings are supported by both quantitative responses and consistent qualitative testimony throughout the dataset

Many parent carers reported similar lived experiences of fear, mistrust, and  harm when engaging with statutory services” – these are families who use state provided education.

Most respondents reported that the support available to their child did not meet their needs.

“Parents described long waits for assessments, lack of coordinated multi-agency input, poor communication between services, and support being offered only once families reached crisis point.

Children with complex needs were frequently described as receiving fragmented or inadequate care across education, health, and social care”.

“A recurring theme throughout responses was the experience of being blamed or disbelieved when seeking support”.

Parents described being held responsible for their child’s distress or unmet needs, having professional judgments override lived expertise, and facing questioning of parenting capacity”.



Please read here for further findings in this research project.


LAs cannot be guaranteed to act in the best interests of children.

Families’ abilities to safeguard and protect their children’s wellbeing and education, including by deregistration, must not be obstructed and blocked.

Please vote against the LCM at the Senedd on 17th March where the Welsh Government seek to apply such obstructive and damaging measures to families in Wales.