Just over a year ago my little family were identified as being ‘in crisis’. The crisis was that with the end of my PhD, so came the end of my bursary and regular income. It was necessary for me to work full time to keep a roof over our heads. By working two part time jobs – effectively a full time job and a bit – it became obvious that Wonder Boy had needs which were no longer being met. Finding your lovely young person sitting alone in the dark when you get in from work because he didn’t understand he needed to turn the light on, finding out he hadn’t had a drink since he got in from school or a snack because no one told him to get one, seeing his sad face that you were not home when he got in was frankly heart breaking. Like lots of other carers, you put on a brave face tell yourself it’s what needs to happen in everyone’s best interests, but it’s bloody hard just the same.
I phoned ASCAT and said this is not ok for us. We were given a ‘crisis’ package of care with a view to supporting Wonder Boy to make decisions about his future. This crisis package paid for a care worker to support WB through activities of daily living and meant that I could go to work knowing that he was cared for, safe and ok.
This package was always going to be temporary and certainly should not still be in place 14 months later. The idea was that WB would start college in September and an alternative plan would be put in place to cover the other two days. We have been pushed from pillar to post during the past 12 months with the majority of care still being provided by me with occasional calling in of favours and bribing other friends and family. It became obvious that full time employed work was untenable so I decided to freelance. Anyone who has started their own business knows this can be challenging. The worry of not having enough work, the long hours, the constant follow up, jobs promised but not commissioned, short term contracts, lack of borrowing capacity, stability, holiday/sick pay does not make this an easy choice but it does mean I am around at home more. As at least one morning a week is taken up managing and co-ordinating WB’s care and meaningful activities and another morning a week is spent chasing up all the professionals who have failed to return my calls from the previous week, freelancing seemed my best if not the easiest option. I doubted an employer would provide the flexibility I would need – yes I can work full time but some of that time will be in the evenings and at weekends and I definitely can’t do Thursday’s before 10am or Wednesday’s at all….
WB has now been transferred to the Mental Health team – he needs the Autism team, but hey ho. He had to be reassessed in case it was found that he was no longer autistic or learning disabled since April and his needs and vulnerabilities were clearly written up. Today we have been working up a new care plan. Basically this means stripping his crisis package back to its bare bones and offering Telecare.
One of WB’s primary needs is the need to hydrate and eat regularly. WB does not recognise thirst or hunger or hot or cold so being appropriately dressed is also a challenge. Hydration is paramount to his wellbeing. Failure to take onboard sufficient fluids results in aggression, oppositional behaviour, confrontation and general pain in the arseness. If continued over the day this behaviour becomes increasingly violent and threatening. In WB’s crisis plan a lovely care worker prompts WB to drink, he observes and notes the amount of fluid being taken. He will put strategies in place should WB fail to drink enough and generally gets him through the day. In his new plan an alarm on WB’s phone or if we are very lucky a phone call from someone will remind WB to have a drink. No one will check that he actually has had a drink and no one will know if he lied about it.
A further need is road safety. WB does not access risk well in the community. Recently seeing a pound coin in the road and with no thought of traffic bending down in the road to get it. Wondering out in the road because the pavement is busy without looking for traffic. Still not using crossings safely despite the hit and run. In the crisis plan a care worker prompts WB to navigate the roads safely, to cycle (not anywhere near the canal!) regarding proper road sense, to talk through again and again the appropriate steps to stay safe near roads which we all take for granted. Under the new plan, WB will have to pay for a tracking device so if we lose him we will know where to look.
In the crisis plan WB is with someone all the time. The ‘someone’ understands his needs and supports him through the day so I can stop worrying about him and focus on my work. With the new plan he will be with someone four days a week and left alone for a whole day because four days a week meets his needs. The risk of being left alone has been pointed out by me and our care provider. He will be provided with an alarm should he get into difficulty.
WB is pissed off about all of this, he has a routine and carers he has bonded with. He has stated that he has no wish to engage with the new plan. He is deemed to have sufficient capacity to make this decision – I am arguing this point – so it is possible we will be left with no care plan. This is what austerity actually looks and feels like.
I am not sure what my next move will be but it will probably cost the local authority more than the £120 a week it costs now. If I state that I can no longer look after WB and effectively make him homeless this would cost the LA, what £1500 a week minimum? Or perhaps I will throw in the towel and accept that a career is not for me and decide I am WB’s full time carer, I can then get carer’s allowance, housing benefit, I won’t pay council tax, and a whole host of benefits I am not aware of yet. I’m thinking that’s going to cost a bit more than the £120 a week in care costs too. Prevention is always going to be cheaper than crisis and it is short sighted to think otherwise.
I heard my social worker tell me today that she has another client currently in hospital with a brain injury. He is ready to come home, but needs an appropriate care package to do so. She put one together based on his needs and it was signed off by her manager. Panel rejected the plan, simply asking for more information. It took the social worker 5 days to find out what further information she needed to provide. Five days where that chap is sitting in a hospital bed for no medical reason waiting to go home. The average overnight stay in hospital costs £400 per day, according to Data.gov.uk. So this chap has cost the NHS £2k because a social worker is trying to source information about a care package.
When WB was under the care of Children with Disabilities services we received a personal budget to meet social care needs. It was a tiny budget to pay for clubs and I was audited every three months. Adult social care budgets are usually larger but in my area they do not have enough finance staff to maintain the audits so money gets put into accounts and is never audited. This begs two questions – How do you know if it’s being spent? I have unspent funds in my account. I also have funds which the Children with Disabilities service should have back. I’ve tried to give it back on several occasions but they don’t return my calls. But the second, and perhaps more pressing question is, is it being spent in the best interests of the person it is provided for. If you are not auditing it, how do you know? I doubt we are the only family in this situation so when I hear my social worker talk of cuts in services, whilst this is no doubt a reality, I would argue that my LA don’t know where the money is either.
Our care needs are nothing next to some, I appreciate I am lucky. I have a lovely partner who is doing his very best to take on the challenges of the gorgeous WB, I have a Mum who is doing her best to find WB jobs to do to make things easier for me, I have very tolerant friends. But there is a limited for everyone and we are almost there. I fear a further crisis package may yet be needed….