Advocating for Mindy
Balwinder talks about how she got good support for her daughter, Mindy, with the support of the CBF. Balwinder is now one of our valued CBF volunteers and co-trainers.
Mindy and her sisters on holiday
My daughter Mindy is 26 years old. She is a very affectionate, bright, sociable, energetic young lady who loves going out and being with people. Her diagnoses are epilepsy and severe learning disabilities. At times her behaviours can be very challenging, the main one being the pica behaviour for cigarette butts.
After spending some time in a new residential placement, things started to deteriorate for Mindy, and she became extremely challenging every time we dropped her back. At the same time, Mindy’s best friend’s mother decided to remove her son suddenly and kept him at home.
Mindy was emotionally very distressed and upset but I couldn’t keep Mindy home as both my husband and I were working. She couldn’t communicate with us but it was clear that she was terrified of going back to the residential placement after every weekend she spent home. I spoke to Mindy’s care manager at the home and we had endless meetings to discuss things but nothing was being done. We didn’t know what to do as there were so many issues but no was listening to us.
The relationship with the home was starting to deteriorate so I turned to CBF support workers. They were fantastic, they had hours to listen to my concerns and they helped me to draft my letters and understand jargon. We discussed DoLS, safeguarding issues, and what approach to take in meetings. Eventually, after about three years, Mindy was moved to a residential home in the borough, which is only a 5 minute drive from my home.
I decided to become a volunteer for the CBF as I could not put a monetary value on the tremendous support that I received from them. I want to support other parents who might be going through what I went through because I know how hard it is to find someone who understands. I support the CBF by manning information stalls at events and conferences. I deliver workshops as a family carer and I give talks to family carers and psychology students. I have also attended advisory group meetings and have become a Family Link volunteer too.