Direct Payments are intended to give families more control over the care and support services their children need and are entitled to. However, for some families securing these payments from their local authority can be a challenge.
Mum, Francesca, got in touch to explain her family’s situation, how our Legal Rights Service helped her through a long and complex process and the difference it has made to her family’s life.
Read Francesca’s story below:
“Our daughter Farrah is 16 years old. Farrah loves adult company and going to her school which features on the BBC series ‘A Special School’. She loves dancing and singing, and her favourite things are her iPad and surprise toys. She has a pretty impressive collection because she has been into small toys and figures for a really long time.
Farrah doesn’t like school holidays when the routine and social aspect of school disappears and she doesn’t like noisy or crowded environments.
How does her condition affect her and your family life?
Farrah has autism and a rare and severe form of epilepsy called Dravet Syndrome. She had her first seizure when she was 3 months old and she was diagnosed shortly after her sister was born at 4 years old. Farrah also has scoliosis which is common in children with Dravet Syndrome. She is on the waiting list for spinal surgery.
Since Farrah was a baby she has frequently been admitted to hospital for weeks at a time following seizures and status epilepticus (prolonged seizures). As first-time parents this was really scary to navigate, and we often felt terrified and helpless not knowing what was happening and if Farrah was going to be okay. There were times when she would have to be intubated and all we could do was be there and try and hold things together. It’s really hard to watch a baby crying because they are having bloods taken, cannulas put in or lumbar punctures.
Farrah’s condition meant that illness, tiredness, sunlight and patterns would result in her having seizures. There was a time when Farrah’s photosensitivity was so heightened that the pattern in my denim jeans or just being out in the sunlight would cause her head to tilt back, her eyes to flicker and would result in a seizure.
As a family we were torn as one parent would stay in hospital with Farrah and one would stay at home to look after our other daughter. As a young family this was hard, and we didn’t have anyone going through the same experiences as us to relate to. Farrah’s sister has grown up with seizures being a normality in our household and sometimes having to cancel plans or miss out on things when these happen. As Farrah grew up, we watched as her friends became independent and she always needed one to one support.
Farrah’s now 16, the hospital stays have long passed but the challenges now are the nocturnal seizures. She is learning independence skills but will always require adults to help encourage, guide and support her.
What led you to get in touch with us?
We asked for help because we were referred to the local authority (LA) for support. They undertook an assessment of Farrah’s needs and our needs as a family and offered direct payments. This was for 2 hours a week and to employ 1 personal assistant to take Farrah out in the community.
Due to Farrah’s seizures we can only manage her in the community when both of us are present. When she has a seizure, she requires special medication called buccal midazolam which is orally administered after 3 minutes. This medication is remarkable and brings her out of a seizure avoiding having to call an ambulance or be admitted to hospital. It has meant that her epilepsy can now be managed at home and in the community. Once out of a seizure Farrah can be transferred to a wheelchair and taken to recover in the comfort of her own home.
Farrah’s teacher had advised they would not let one of their staff manage Farrah in the community on her own. When we shared this with the LA, they decided that Farrah’s seizures were a health need that couldn’t be met through direct payments.
This decision left us in a long and desperate battle with the LA who should have been there to support us and had a duty to provide support. We called meetings with health and the LA and they would not change their decision even through health were advocating for us too. There were other children and young people in various local authorities across Wales accessing direct payments and epilepsy nurses training personal assistant in how to use Buccal Midazolam.
We put in a stage 1 complaint, but the LA didn’t respond within the 10-day timescale. I had to wait 12 weeks with no response before I could write to the Ombudsman and ask for help. The Ombudsman got involved and the LA were asked to respond. The Stage 1 response confirmed their original stance and that they would not provide direct payments.
I contacted Cerebra for support. I was hoping they could advise me of Farrah’s rights and entitlements. As a family we had gone through lots of challenges during this period including significant bereavements, we also work and I was sadly losing the will to fight another battle. Even though I knew the LA was wrong, I was starting to think Farrah just wasn’t entitled to it and I should just stop. I thought as Farrah was getting older and would be nearly 18 by the time we perused this that it wasn’t worth it but I then thought of all the other children it would affect and I wanted to continue for them too.
What information or support did you receive?
I messaged Cerebra through their website and then Derek from the Legal Rights team contacted me. Immediately I felt heard and validated, this alone was enough for me to commit to pursuing this.
Derek provided information on rights, entitlements, legislation and Ombudsman’s rulings. He found the names and contact details of who could be contacted at the Local Authority, such as the Head of Children’s Services and the Head of Legal to ensure they were aware of what was happening as they had responsibilities and duties to uphold.
Derek was consistent in being in contact throughout. He would support me in drafting letters, which helped when I was busy working or caring for Farrah and struggled to find time. He would always ensure I was happy with the content and provide other options, but I trusted Derek as he always did what he said he would do and always provided the facts.
We were able to put in a Stage 2 complaint. This wasn’t taken up in timescale, but he kept supporting me to apply pressure and get answers. Although this was a long road and neither me or Derek could force the Local Authority to respond we did end up getting our complaint investigated and were provided with an outcome. Unfortunately, the Stage 2 outcome although it upheld my complaints was vague at best in terms of how the situation would be rectified and set right.
Derek supported me to go back to the Ombudsman armed with factual information and previous rulings. We were fortunate that Ombudsman intervened and we were able to reach a resolution with the LA. The LA, within a very short timescale, allocated Farrah a new social worker, assessed her, agreed to provide 4 hours of 2:1 care a week to support her independence in the community. The Local Authority also agreed to update their direct payment policy which was obviously incorrect and retrain the staffing teams.
What difference has our help made to your child and your family?
We have been able to employ two personal assistants for Farrah who have been trained in the use of her emergency medication. Farrah has been out with them four times now and is loving spending time in the community developing her independence and confidence.
It’s the first time we have felt at ease knowing Farrah can be in the community away from us or school and we know that she is safe, has the right level of support and is also having fun.
Without Derek and Cerebra we wouldn’t have got here. Farrah’s enjoying her time away from us and her sister Paisley is able to have one on one time. The four hours of support a week has had a positive impact on everyone, but mostly Farrah which is amazing.
I am really grateful. This was a long and challenging case, and I cannot thank Derek enough for his commitment, empathy, knowledge and support.
This is a wonderful charity helped me enormously when my son was younger
As parents of two boys (now middle-aged adults) who have never had any of the sort of health issues that Cerebra routinely has to deal with we cannot imagine the stress and difficulties some parents have to deal with. Nor their struggles on the legal front to obtain necessary support from Local Authorities … as in the case of Farrah (we have a granddaughter called Farah …just one r perhaps because of her Pakistani heritage?). So, we are glad to be able to contribute to Cerebra, albeit in a modest way.by direct debit. All best wishes to everyone connected.