Individual advocacy became collective advocacy for families in Cambridgeshire.
Author: Rekha Neilson
Rekha and her family have been managing support for her son Rohan and faced serious problems in their experience of social services in Cambridgeshire. However, not only did the family continue to fight for Rohan's rights, they also contacted more than 100 families across Cambridgeshire to see whether their experiences were similar. This strategy of collective resistance to injustice provides an important model and the report that you can download below is a good example of what advocates can now do to help strengthen their cause.
Generously Rekha has also offered to help other families:
"I would also like parent volunteers from across the UK that would like to replicate this in other counties. I am a firm believer that you can't eat an elephant in one go, we have to chop it up into pieces. I have a Google survey that I can easily share and help people replicate my report in their area, hopefully this in itself will stimulate change, next stage is bringing all this together."
A survey was carried out in Cambridgeshire to understand the experiences of parents of special-needs children/adults in the area to raise awareness of these experiences and create positive change in Children’s and Adults' services.
Our experience and the data collected from 106 parents highlights a deeply flawed and exhausting process, particularly within the education and social care systems. Key themes emerged showing widespread issues with transparency, poor communication, support, misuse of child protection/safeguarding, and use of coercive control. The mental and emotional toll on parents is significant, with many experiencing extreme stress, anxiety, and burnout. The system's ineffectiveness, coupled with fears of retaliation potentially affecting parents and children, leaves parents feeling powerless and victimised.
The complaints system appears completely flawed, used as a defensive tool to protect authorities rather than aiding parents and being an instrument for systematic improvement.
There is a clear need for systemic reform prioritizing transparency, adequate funding, co-production, and accessible support services. To truly support families and children with learning disabilities, the system must shift from a bureaucratic focus to one that genuinely prioritises the well-being and needs of those it serves.
It is understood that there are financial pressures on the LA and ICB, however it is not understood how this justifies spending money from the public purse in hiring social care staff and expensive legal representation to vilify parents and avoid providing the care needed by the most vulnerable in society.
You can reach out to Rekha by email here.
Read and download the free pdf in your browser, link below.
The publisher is Rekha Neilson. Report of Experiences of Parents with Special-Needs Children across Cambridgeshire © Rekha Neilson 2024.
children and families, disability, Family Leadership, health & healthcare, Inclusion, Personalised Support, social care, England, Paper
