For every person with autism, ADHD and/or Tourette’s, the impact is on the whole family. A parent in Scotland describes her own feelings as her son made the transition into adult services (Names have been changed)
Linda says she’s been lucky, having a succession of supportive professionals involved with the family. Now in his early twenties, son Simon lives in shared accommodation with round the clock support and regular activities that include swimming, shopping, watching DVDs and playing board games. But she knows it could have been very different.
“If a professional tells you your child’s needs aren’t as severe as someone else’s, it feels like they’re belittling what you’re going through,” she declares. “Just because the needs are different doesn’t necessarily make it easier. I have a friend whose child has Asperger’s and is very capable – he works now – but she has been through hell. It’s been different problems but she has experienced the exact same emotions as me. That’s difficult to get across to professionals because they view it in a completely different way to those on the inside looking out.”A course run by Vocal underlined for Linda the need to plan well in advance: “Prior to that, I literally had a panic attack if I thought about the future,” she says. “The unknown, and the pressure of responsibility, is daunting. Transition for us was from age 14 to 19, and I started a lot of things in the year Simon turned 15.”
Simon attended a special school, which Linda believes served him well. “We had review meetings from very early on, and they were supportive in getting social workers involved,” she explains. “A friend of mine, whose child managed mainstream school, didn’t have any of this. They had no special needs career officer or anything like that because school wasn’t geared up to provide that service.”
School advised her Simon could stay until age 18, but the family had identified a centre that appeared to meet his needs. Funding was available initially for only one day a week.
“We found ourselves having to decide quickly,” Linda recalls. “Although the centre was good, I wasn’t sure it would be the right thing. Nobody should underestimate what that feels like. I had three weeks of waking in the middle of the night, agonising. These relationships are hugely significant for people like Simon and it’s more intense than for most young people because there are so few safety nets.”
At that time funding was through Independent Living Funds, but to be eligible Linda had to stop Family Allowance for Simon and apply for Employment Support Allowance on his behalf. She also had to coordinate meetings to select and induct staff who would work with him, bargaining over how much time they could offer, and agreeing practical arrangements for shadowing in school and over the summer to acclimatise him to the new centre before the move. Because Simon would be 16 she had to be approved as his benefit appointee to manage his money, and applying for guardianship took longer than expected when Simon’s form was mislaid by mental health assessors, meaning they missed the court’s deadline and had to begin the process of application and assessment again. Alongside this was negotiating the mobility car the family needed to meet Simon’s transport needs. It quickly escalated into the equivalent of a full time job, with caring responsibilities on top.
“Simon’s needs when he was home left no time for anything else, so when he wasn’t in the house there were so many things to do,” she says. “It’s an enormous amount of paperwork, phone calls, form filling, explaining things, organising things. Looking back, it was the hardest few years I’ve ever had.”
One of the worst things was fear of the unknown.
“That’s something people who aren’t in our situation don’t grasp. How will this affect my child, have I made the right decisions, is it going to fall apart, will I have to go through this again in a few years when everything has exploded because I got something wrong … it presses down on you just when you need to be organised and calm and make major decisions.”
What the role of professionals should be is the subject of national debate, but Linda believes working together is crucial.
“You are the expert for your child and what’s probably going to be best for them. It’s very easy for a professional to undermine a parent – not necessarily maliciously, but they are capable of being wrong and sometimes as a parent you have to fight your corner. If I’d listened to professional advice Simon wouldn’t now be visiting us at home, yet that’s working really well. At the same time, it was thanks to key workers I trusted that Simon’s younger sister received support as a young carer, and that extra respite was in place by the time we needed it. So without that commitment from the professionals around us it could have been very different.”
One challenge, she feels, is that budget pressures lead to support workers focusing on cost rather than actual needs. Another is terminology that can be open to interpretation.
“To the social worker, transition meant a placement they would finance,” Linda explains. “But for me, transition meant everything about Simon’s life. It should cover staff, funding, people, everything.”
She’s clear about one thing: luck shouldn’t be the determining factor.
“There should be a pathway for everybody in these situations,” she says. “If needs aren’t seen as being so great, families miss out. It’s not fair on them and it’s not fair on the child. Yes, a lot of young people are needing help, but there have been clear indications for some time that they are coming to this stage and will require support.”
Too often, she feels, families face competition for services.
“Years ago there was a bit of me felt guilty that maybe someone needed day service support more than me, even though logically I knew I desperately needed it. To tell a social worker you’re not coping with your child is very hard. At one point I began to worry it would be cheaper for them to take my daughter into care than help Simon. It doesn’t matter if it’s reality or not, that thought is hard to get out of your head.”
There’s a psychological cost, too. “You end up having to emphasise the negative the whole time and psychologically that is shattering. You spend your life trying to be positive and then you’ve got to suspend that and look at the worst scenario.”
“My concern is, how the psychological effect on the carer transfers itself to the young person. If there’s last minute panicking, and that affects your decision making, you may end up going ‘that’ll do’ rather than ‘this is right’. But if it ends up going wrong it affects everything.”