This is part 4 in a series of articles that Emma has written for us. You can also read her blog Ups and Down as Mum.
Now that Joshua is 18 and a half years old , I thought that we had survived all of the surprises of his ‘coming of age’ , but I was wrong. For the last 8 or 9 years, Joshua has received Direct Payments from Social Care, to fund paying his DP key workers to take care of him. We have predominantly used these payments to fund after school care to cover the gap between school home time and when I get home from work. But it also pays for childcare during the school holidays and our occasional nights out, so it is an invaluable source of finance that we have come to rely upon. Joshua has been allocated a certain number of hours per week and the money automatically goes into his Direct Payments bank account and is only used for funding his care.
When we reviewed Joshua’s care package, as he approached adulthood, it was agreed with his social worker that his current level of Direct Payments would be maintained at the same level and so I took it for granted that this would happen, while we focused on finding adult respite , for the other component of his care package.
During the Easter school holidays, I relied upon our Direct Payments key worker a lot – she covered two overnight stays for me ,when I had to dash to hospital to support my ill mother while my husband was working overseas, and she took care of him for several full days in the holidays, so the standard hours that are allocated to us, would not be expected to stretch to cover all of this exceptional care. I submitted her hours to the payroll company and they advised me that I needed to pay her £1100, plus £182 to HMRC, so this was an unusually substantial month, as I knew it would be. I went to my DP bank account but found it to be virtually empty, and I usually keep a balance of £500 for emergency cover, so I was shocked. Upon closer inspection I saw that his last payment was received in February 2019, so I immediately knew that this had been another casualty of him turning 18!
I called the Payments section of the Council, who confirmed my fears and told me that Children Services had cancelled the payment in February as he was no longer a child, but that nothing else had been set up. So I emailed and called our adult social worker to find out what was going on and she called me back with an apology. The children’s payments had indeed, as I had already found out, been stopped before the paperwork for Adults had been completed, so there was consequently a gap in payments. I was particularly disappointed at this failing as I had recently been using my Direct Payment worker more excessively than usual, without, unknown to me at the time, the means to pay her. I was assured that the missing paperwork would be completed and this failure would be quickly resolved.
Gap between Adult and Child Services
However this was not the case as it took two and a half months before the missing funds reached our DP account. The first delay was that someone from Direct Payments wanted to visit me at home and between hospital visits and my job, this was proving difficult to organise. In the end I suggested we progressed things over the phone and I called her in early May. She only needed details of my Direct Payments bank account – which the local authority have been paying into for years! – and then she assured me that it would be resolved. Great, I said, so will I have the missing money next week? She laughed and replied that it would take 4 weeks as various departments at the council would each need to play their part. I asked her to pull as many strings as she could and I chased it after four weeks, as nothing had materialized. The week after my mother died, our social worker called to offer her condolences and to advise me that the personal budget would reach my account either that or the following Thursday. But neither happened, the back dated cash did not reach the account until into June.
I am left with real irritation at the system which fails our young people. Joshua’s needs will not change all of his life; they certainly did not alter between the 4th and 5th of March 2019, when he turned 18 years old. The handover between the Children’s and Adult teams is not seamless as it should be and processes that have been in place and working effectively, are suddenly turned on their heads and there is a gap in provision. Yet we all knew when Joshua’s 18th birthday was going to be , we were all working towards ‘transition’ for the last few years, so why did certain processes fall through the cracks and caused distress and financial hardship? This paperwork should have been completed in good time once the level of Direct Payment hours was confirmed. It seems that Children Services were very keen to stop providing for Joshua , whereas Adult services were slower to take over responsibility and so during that critical changeover period, if Joshua were a baton in a relay race, he has been dropped on several occasions, while we have been running as fast as we can to keep up.
Advice for the Transition
My advice to parents of 16 and 17 year olds would be to not assume anything is going to happen, just because it ought to, but keep checking that all of the processes are covered. I was guilty of assuming that professionals would simply do their jobs for us and allowed them to get on with it. Do not be as passive as I was, but double check that everything is in place for your child’s 18th birthday. It is rather like the widespread panic in the run up to the Millenium, only in Joshua’s case, systems did fail and his direct payments and his continence products did not survive his coming of age. I was so busy focusing on finding and trialling adult respite, that I took my eye off the other balls in the air and as a result, they crashed around my feet. You already know that you have to be an excellent juggler, as a parent of a child with special needs, but around their 18th birthday, everything gathers pace and additional balls are thrown at you, trying to knock you off your rhythm and if you are not careful, and well -prepared, those extra balls will knock you off balance and you will drop everything.
Six months after Joshua’s 18th birthday, I am hoping that the only remaining shock will be leaving school next summer and starting at a daycare alternative. I have recently begun that search process. That should be, as far as I know, the last piece of the adulthood puzzle to complete for the time being, assuming that Joshua will continue to live with us. Some parents I know are also looking for supported living for their young adults or employment or educational opportunities, but that is not the case for us. For our SEN children, turning 18 means so much more than a big party and the right to vote and it requires some real planning and resilience. I wish everyone on the brink of this milestone, all the luck in the world.