Emma is mum to Matthew, a young adult with Dravet syndrome, and Alice. Matthew is now 21 years old, but due to the brain damage associated with many years of his early years with seizures and ineffective medication, he has a developmental age of around 12 to 15 months. Emma started planning for Matthew’s transition into adult services when he reached the age of 16. Although Emma eventually achieved Matthew’s plan in full, the transition process was anything but easy, and she needed to fight every step of the way.
Matthew’s transition plan including four main goals: remain living at home with his family, deputyship for Emma, a suitable day centre and special needs college that provided all the therapies Matthew needed to keep him healthy, happy and well-cared for, and extra care within the home via Direct Payments.
Achieving each of these goals brought different challenges.
“Getting agreement for Matthew to remain living at home with his family was relatively straightforward,” said Emma. “Everyone involved agreed that this was in his best interests. It is also the most cost effective option for the local authority as equivalent full-time residential care would work out at approximately £3,000 per week.”
Becoming Matthew’s Deputy was more complicated. Emma needed to apply to the Court of Protection and prove that she was the best person to advocate for Matthew and represent his interest. “The forms are unbelievable and a minefield to work through,” she added. “You can employ solicitors to do it for you but it’s really expensive. I did it myself and it was a lot of work – downloading and completing forms, copying papers, sending questions and answers to and from the court. However, it is absolutely worth it for peace of mind, the thoughts of responsibility for my son being with the local authority and not me once he turned 18 was just too hideous for me to even contemplate.”
The next challenge was to find suitable day placements for Matthew which included a special needs college for term time and a day centre for the holidays. Emma was unhappy with the choices of special needs colleges recommended by social services and all local day centres were shutting down. She investigated options herself, including a special needs day centre that was outside her county but only a 45-minute drive from home. “We needed a college and a day centre that could keep Matthew healthy and mobile as well as cared for, stimulated and happy,” she explained. “The places I found were not on the recommended lists by social services, although they were known to them. I stuck to my guns and listed out all the reasons why these were the most suitable option, such as the positive benefits to Matthew’s quality of life, which is recognised by social services as an important consideration.”
Last but not least, Emma needed to secure extra care within the home through Direct Payments, which meant working out a Personal Budget that would allow her to manage and pay for the extra care. “Never underestimate what you need in terms of extra care at home as the budget you apply for will be cut”, she advised. “When you list out the hours that you need, include going to work (it is a parent’s human right to go to work once a child reaches 18), holidays, sick days and overnights. I included two full nights’ sleep per week plus at least one weekend per month and six weeks full weeks of cover per year to allow for holidays and my work commitments which take me away from home.”
In putting Matthew’s transition plan in place, Emma and the family went through a number of assessments, including Health Care, Social Care, Carers’ and Young Carer’s assessments, in order to determine the level of support needed and which part of the local authority should fund this. “Be prepared to be asked the same things time and time again”, she said. “There’s no getting around it. Again, doing your research helps. Read their pamphlets and quote these back at them, emphasizing that all decisions need to be in the best interests of the young adult.”
Eventually the family was assigned an excellent Social Worker who was very helpful. “We went to the panel with our plan of what we needed”, continued Emma. “We made our case and got everything we asked for, with payments funded by Social Care.”
Every family’s experience of transition will be different, because every young adult with Dravet syndrome is different. For parents who may be about to go through transition, Emma noted, “The best advice I can give is to invest plenty of time in your research. Talk to other parents and professionals, but don’t rely on advice – find out for yourself and make your own plan. Make a list of what you need and cost everything out. The cost of residential care is a useful comparator because this is much more expensive than home care. You’ll need to be prepared to have a lot of arguments on the way but stick to your plan. If you know your stuff you can get what you and your family needs.”