The Numbers Game: advocating for Dylan

Dylan leaves school 015This time last year Dylan had just left school. Our local authority had not allocated an adult placement and I was anxious; Dylan was in need of structured provision and I needed to get to work. At the end of the summer, with no solution in sight, I decided to take legal action against the council. In this post I tell the story of my struggle to secure provision for Dylan; it’s a ‘cock up or cover up’ tale and a narrative of numbers.

I’ve heard this cited as the amount (£) required per week to support an autistic adult with significant needs. That’s £200 per day calculated over five days or £142.85 per day for seven; these figures can be further divided to produce a ballpark hourly sum. While it is clear from such calculations that £1,000 per week doesn’t come close to funding residential care it is a realistic amount for day care. This may seem a lot of money. It is not dissimilar, however, to the amount we would need to pay parents to care for pre-school children if this were rewarded as paid labour. Parents of autistic children provide such support, unpaid, throughout the school years as part of an informal economy of care. Once an autistic child reaches adulthood, however, the cost of any continuing support needs are funded via personal budgets and become part of the formal economy.

Compassionate economics
botanical gardens 001
Caring for the vulnerable is a responsibility which everyone assumes in a compassionate society; in the UK these principles are at the heart of a tax system which redistributes resources to those most in need. I’m fortunate to have a job which enables me to make a contribution to the welfare state. While I don’t always agree with the Government’s spending priorities, I’m happy to pay my taxes: for me, Dylan embodies both reason and need. Supporting disabled people contributes to the economy too: Dylan purchases care services with his personal budget which helps to create jobs with all the economic benefits which follow from that. While the care sector faces significant challenges, especially in relation to the pay and conditions of care workers, it is sustained by people like Dylan. Dylan also contributes to the economy through his spending on goods and services, particularly in the leisure sector. This injection of money into the local economy via personal budgets creates a multiplier effect and contributes to a community’s financial health and well-being.

39, 010.00 botanical gardens 003
So when Dylan turned 18 he underwent assessment to determine how much social care funding he would be allocated; this is calculated via a questionnaire completed by a social worker. Dylan’s personal budget was set at the above amount. When I received notification of this it seemed like a lot, particularly as at that point Dylan was still at school and needed only a small amount of respite (I have written about this here). I had a sense of unease though; I wasn’t sure how the budget would cover day care as well once Dylan left school. I wasn’t aware, at the time, of the figure of 1,000 a week; had I been I might have asked which 13 of the 52 weeks the budget was not intended to cover (and why).

It was an ‘indicative figure’ only, apparently, not a funding agreement. What this meant was that the Panel believed Dylan’s care needs could be met within this amount. The next stage was for a Support Plan to be submitted with detailed proposals for how the money would be spent. Only once such a plan had been approved would any funding be released; a proposal which didn’t keep within the indicative budget, I was warned, was unlikely to be funded. I opted to write Dylan’s Support Plan myself as I had already started researching and visiting providers. The settings I considered included local and regional providers, colleges and care homes, day centres and residential placements. My final tally of visits to potential providers was 17: ‘I’ve never known anyone make as many visits as you’, a man from the council would later observe.

Tails and dogs botanical gardens 004
There is a saying in education: ‘it’s the resources tail wagging the curriculum dog’. This refers to the way that educational practice is sometimes driven by resources rather than need. And what’s wrong with that? you might ask, everyone has to live within their means. While Dylan was in the education system, however, the starting point felt like need; the budget played a part in the provision he was offered but it was factored in after his needs had been considered rather than before. I was struck by the way this turned on its head when Dylan moved into adult social care; here is what you can spend – now go and see what you can buy. What Dylan could afford with his budget, it turned out, wasn’t very much. The variety of the 17 providers I had identified was reflected in the range of their fees. The first provider I visited set the gold standard at £4,000 per week. When I looked round the setting I felt optimistic about the future. Afterwards, when I realised it was neither typical or realistic, I allowed myself only fleeting disappointment; the setting was expensive because it catered for people for whom all other placements had failed. Dylan was at the start of his journey, not the end; requesting this setting would be unreasonable. I therefore ‘cut the cloth’ (a variation on the tail and the dog).

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botanical gardens 005I opted for a day service for adults with learning disabilities and submitted my first support plan in April 2013. The projected budget was higher than Dylan’s indicative budget but I thought it would be OK; it worked out around £1,000 per week. Furthermore, the amount requested for day care was within the indicative budget; it was the one night a week of respite which had taken the overall amount above the indicative level.

Level 42
The April support plan was rejected. So was a revised plan for a reduced amount which I submitted in May. So was the further reduced June support plan. And the even further reduced July support plan. In order to cut costs further I was faced with the choice of sacrificing Dylan’s one night a week respite provision (in the almost-certain knowledge that I would get into crisis without it) or keeping the respite provision and reducing Dylan’s day care provision (so not being able to work full time and provide financially). Then I discovered level 42: there was I heard (though the council wouldn’t admit this) a budget cap of £42,000. Was it true that Dylan’s Support Plans were being rejected because of a budget cap? I asked the social worker. No it was because they were above his indicative budget. Dylan needed a higher indicative budget then – the one he had been given wouldn’t meet his needs. Could he be reassessed? Dylan’s indicative budget was as high as it was possible to be allocated, Dylan’s social worker replied: I could request reassessment but there was only one way it could go and that was down.

The line in the sand botanical gardens 006
Social workers are doing the job because they care but it can be hard to remember this sometimes. There are times when they can feel like adversaries rather than advocates. They are under pressure I know; they are probably encouraged not to bring Support Plans for approval which are above a certain amount. I know some social workers who have quit their jobs to work on projects which give them more contact with clients. I imagine that for them the policy drift became intolerable. It’s what I think of as the line in the sand: the point of principle you will not cross; the place where you shout Stop, Enough! When Dylan’s fourth Support Plan was rejected it was suggested that I employ a Personal Assistant for Dylan in order to cut costs. While this works well for some people it would not be a good option for Dylan or the PA: I had reached my line.

139a botanical gardens 007
I couldn’t see a way of maintaining our current life so started plotting escape narratives: I would buy a camper van and travel round Britain with Dylan, living on benefits. We would find a 52 week caravan park. We would live on a commune in exchange for payment in kind (what? what could we offer?). I started typing wild questions into Google, hoping for an answer. Then something appeared in my Facebook newsfeed: an autistic man in another authority was taking his council to court for budget capping. I read with gathering interest; although the details were different, the principles were the same. I shelved the camper van idea and booked an appointment with a solicitor.
The solicitor confirmed that budget capping was illegal but, she said, if we didn’t have evidence in writing that the local authority had set a limit of 42,000 it would be a difficult case to win. However, my solicitor asked, was I aware of section 139a funding and had Dylan been assessed? Section 139a is a clause in the 2000 Learning and Skills Act (superseded by the 2014 Children and Families Act which comes into force next month) which requires local authorities to provide education and training to young people with a learning disability up to the age of 25. Local authorities, apparently, were required to conduct a 139a assessment of all school leavers with a learning disability.

Cock up or cover up? botanical gardens 008
I had never heard of a 139a assessment. In all my conversations with teachers, transition workers, council representatives, social workers and other parents, it had never been mentioned. Dylan’s school had completed their section of the assessment; it was the responsibility of the local authority, however, to use this to identify an appropriate educational setting. In my local authority this wasn’t happening. While educational places were being offered to young people with an Asperger’s diagnosis or at the ‘higher functioning’ end of the spectrum, Dylan and those with a similar level of need were not being offered education beyond school. Previously, some young people with high needs had been funded to take up specialist education places outside the city but the local authority had stopped funding such provision. What this meant is that support for young adults with high needs was being funded entirely by social care (and sometimes continuing health care). For some families, this was adequate; for example if a parent was at home and able to offer support or where PA support was appropriate. It was only the fact that the social care budget wasn’t enough to support Dylan for the five days I needed to be at work which brought the issue of 139a funding to light. Who knew about this? Not the parents. If social care workers knew about it they didn’t think to mention it. The Council’s legal department, in the letter to Dylan’s solicitor in which they accepted all the claims made against them before the case went to court, suggested that Dylan had been ‘overlooked’ because he was at a specialist rather than a local authority school. Well if they want to claim that let them, said my solicitor, who thought they were covering up. The man from the council who was instructed to complete the 139a assessment on Dylan as a matter of urgency assured me, however, it was just a cock-up.

76, 000 botanical gardens 009
Discovering that Dylan was entitled to education funding appeared to solve the problem of the uncapped but inadequate social care budget; I could combine education and social care funding and put together a weekly programme which would meet Dylan’s needs and enable me to  work. It feels as if at this point I ought to write ‘so it all ended happily ever after’. Except it didn’t.
There wasn’t, it turned out, any suitable education provision for Dylan in the city. EFA funding (arising from the 139a assessment) could only be used at organisations which were on a list of approved ‘Natspec’ providers; in my local authority there were less than a handful of these and none aimed at adults with high need. While my local authority had stopped funding young people to attend specialist colleges outside the city, they had failed to develop any provision within the authority for young adults like Dylan. The college I thought the likeliest refused to even assess Dylan for a place. Out of interest, I asked the man from the council, what does a full time place at this college cost? I had won a point of principle it seemed; Dylan was entitled to EFA funding almost double the social care budget but there was nothing for him to spend it on.

Five botanical gardens 010
I submitted Support Plan number five in August 2013. This was an interim plan, I stressed: I was requesting support for Dylan from the social care budget while I worked with the local authority to develop suitable educational provision for Dylan. Premises had been identified. A steering committee had been set up. Somebody was (more or less) project managing. While the new provision was being developed Dylan would be supported from the education budget one day a week at a city farm. I would make a contribution too through a temporary reduction in my working hours. This would reduce the amount of social care funding requested and, once the provision was up and running, Dylan’s education-funded days could increase to two or maybe even three, further reducing the cost of social care.

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Presume incompetence botanical gardens 011
‘Presume competence’ is a buzz phrase in the disability community at the moment; the idea is that we should not assume that because someone has alternative neurology (with associated differences in communication, behaviour etc) they are not competent. My experience with adult autism services in the last year has led me to presume them incompetent, i.e. not to assume services meet need (that is not a slur on individuals but the system). While I don’t believe Dylan’s entitlement to education funding was deliberately concealed, nor do I accept he was forgotten; it was a consequence of a fragmented system which put services not service users at the heart of decisions. I have told this story as a narrative of numbers to illustrate the way decisions were made about Dylan’s care on  economic grounds. While provision is clearly subject to funding constraints, we cannot allow local authorities to cut statutory services in order to balance budgets. There was never any doubt about the level of support which Dylan needed; the issue was which sector was going to take responsibility for funding it. The needs of autistic adults are complex and will not be met unless professionals from the health, education and care sectors have mechanisms for talking to each other; perhaps the Children and Families Act, with its proposal for education, health and care plans, will help address this.

Two DSCF3966
Last month, after my long battle to secure education provision for Dylan, I heard that he had been approved for health care funding. To qualify for continuing health care funding you need to score two ‘As’ on an initial assessment tool. It is difficult to get such scores; you are in the hands of the assessor and challenging their judgement is complex and time consuming. Nonetheless, alongside my attempt to secure education funding, I tried (I have written a little about this here). I’m glad I did; Dylan will now finally be able to access the provision he needs. While it means he is no longer in need of the social care and education funding I fought so hard for,  others will benefit from the education provision being developed in the city as a result of his case.

Was it worth it? The cost to myself and Dylan has been enormous; if you’ve been following this blog you’ll know that Dylan has developed behaviours recently and it’s possible these are a result of his difficult year. The events narrated here cover the last 12 months but I started planning for transition when Dylan was 14; he is 20 now and it’s not over yet. I’m exhausted. Had the original Support Plan been accepted – at just 12,000 over the budget cap – much uncertainty, stress and damage might have been avoided. And, ironically, it would have been cheaper. But was it worth it? Yes.

* Notes: Some of the details of Dylan’s case will be superseded by the 2014 Children and Families Act. However the Act is not yet in force and interim arrangements require local authorities to continue to assess school leavers with a learning disability under clause 139A in order to provide an appropriate education placement. If your child left school this summer you might want to pursue this. Although the mechanisms are different under the new legislation, the principle of access to continuing education for young adults with a learning disability remains. Some useful resources include:

  • HMSO (2000) Learning and Skills Act
  • HMSO (April 2014) Children and Families Act
  • Department for Education (April 2013) Section 139A Learning Difficulty Assessments Statutory Guidance for local authorities
  • Department for Education and Department of Health (April 2014) Implementing a new 0 to 25 special needs system: LAs and partners
  • Department for Education (August 2014) Special educational needs and disabilities: a guide for parents and carers
  • Natspec:  the Association of Nationalist Specialist Colleges

The legal firm which were so helpful in Dylan’s case was Irwin Mitchell; my thanks to his superb solicitor. * All the images were taken by Liz except the closing photo which was taken by a member of staff at the day centre Dylan was finally allocated.  The opening photograph was taken on the day Dylan left school in August 2013. The other photos were taken in the Botanical Gardens, a place Dylan loves.

From Cornerstone To Coping Stone: re-thinking short break provision

I intended to follow last week’s post on the benefits of short break provision with some reflections on the challenges. I could never have predicted how relevant this would turn out to be; Dylan’s short break provider decided this week that they can no longer support him given his level of need. Instead of reflecting on challenge from a place of stability I am therefore in a place of uncertainty; this will inevitably influence the tone (and ending) of this post. A week is a long time in a carer’s life…

Coping with the luck of the draw

The approach to allocating short breaks to families varies across Local Authorities but generally such provision is limited. In order to offer these more widely some Authorities earmark funding for one-off grants; these are welcome but it is regular breaks which can make the difference between a family coping and being in crisis.

Because access to regular short breaks is limited it is dependent on referrals from education or social care professionals. Dylan was first recommended for ‘respite’ by his primary head teacher; he would benefit from a 24 hour curriculum one day a week, she told us, while we caught up on sleep. Looking back I realise how lucky we were to have her support; there are plenty of families in the same situation who do not get referred. Access to short break provision is also, however, a postcode lottery; as well as being lucky to get the referral, we were fortunate that there happened to be a children’s respite home near to where we lived.

From age seven, therefore, Dylan was allocated a ‘standard care package’ (one overnight a week and one weekend in six) in a purpose-built home with a small peer group. When he turned 18 Dylan was no longer able to access short breaks through children’s services. This was a difficult transition for Dylan made worse by the fact it was out-of-synch with transition from full-time education the following year (I’ve written a little about this here). I had hoped to ease this process for Dylan by establishing a similar pattern of short breaks to the one he was used to (albeit in an adult setting) for his final year of schooling. If I could get this in place, I thought, the new short break provider could help support Dylan when the time came to leave school. Achieving continuity in provision, however, proved impossible; I didn’t know it at the time but we were at the start of a journey into crisis.

Crisis? What crisis?

Mulberry Lodge 004As the time for Dylan to leave children’s services approached I became concerned by the lack of planning for transition. One morning, after numerous phone calls, I discovered why nothing was happening: Dylan no longer had a social worker. Why, I asked, did we not have a social worker? We had been de-allocated, I was told, because we were not considered to be a ‘family in crisis’. It’s flattering in a way, the man on the phone suggested. I can live without flattery, I told him, demanding that Dylan be re-allocated.

I soon discovered that ensuring Dylan’s short breaks continued would take more than a social worker. Ours wasn’t able to organise this, apparently. In my Authority the introduction of Personal Budgets and Direct Payments (about more of which in a future post) meant that Dylan would have to undergo a full assessment in order to ascertain what level of annual budget he was entitled to. I explained that Dylan didn’t need a budget; he was still at school and living at home with me. We only wanted one overnight break a week. The system, however, was inflexible; the only way Dylan could access short break provision was if I agreed to a full assessment.

Mulberry Lodge 007This was not the end of it. Once the assessment had been completed and a budget calculated I was told I had to draw up a Support Plan (about more of which in a future post). I assumed that social workers would advise on and recommend potential care providers but this was, apparently, no longer part of their role in my Authority. Instead, families were required to hire a Support Planner (and pay for this out of their disabled child’s already inadequate budget). I explained (again) that I didn’t need care services for Dylan as he was still at school and living at home; I only needed one overnight break a week. I would still have to submit a plan, I was told, showing how I would use the budget. But I wouldn’t be using the full budget, I pointed out. How much of it, I asked, could I spend on overnight breaks? There was no clear answer to this.

In time there were no answers at all; it was the summer holiday so people were on leave. Dylan and I were still without access to short breaks and feeling the strain. Not only did I not have an overnight break from caring once a week, I didn’t have any time off during the day either. I was on 24/7 duty and close to breaking point. I think I had been aware that Dylan’s short break provision was valuable  – certainly I made full use of the space it offered to focus on other aspects of my life. I’m not sure, however, that I realised quite how essential the support was in enabling me to cope. Now, having been de-allocated because we were judged not to be in crisis, that is exactly where we had ended up.

The gap

Mulberry Lodge 012Our descent into crisis took just four months. Not only did the professionals not realise this could happen, they failed to grasp that when a family are coping it may be because they are receiving support which enables them to cope. Removing support in the belief it is no longer needed can cause a house of cards to tumble.

The gap in short break provision had a significant impact on Dylan as well as me. While nothing could have taken away the sadness Dylan felt at having to leave his respite home, he may have understood the process better had there been something to replace it with. Appropriate transitional support would have enabled staff from the home to accompany Dylan on visits to a new provider and help him to settle in. Not only did this not happen, the gap in services meant that a routine which Dylan had followed for over a decade broke down. Two years later Dylan has not recovered from this badly-managed transition and still carries around a photo album recording his time at the home  (I’ve used some photos of it to illustrate this post).

Mulberry Lodge 023Although the gap in Dylan’s provision was caused by the inadequacy of transition services, the situation was compounded by a lack of appropriate providers of short breaks for adults in my Local Authority. While a key purpose of provision is to provide support for me, it is equally important that the experience is valuable for Dylan. The children’s sector had offered Dylan a relevant peer group, a range of adults (including male role models) and access to space, resources and activities which aren’t available in the family home. Because these were factors which had proved so successful for Dylan, I looked for them within the adult sector when trying to identify a new short break provider.

It soon became clear, however, that the model in the adult sector was independent living (where service users are placed singly or sometimes in pairs within regular residential accommodation). While this may be appropriate for some young adults, Dylan’s needs hadn’t altered; he still required a setting which gave him lots of space to burn off energy and which could provide the resources and activities from which he benefitted. This was not something that was available, however, at least not within my Authority or Dylan’s budget. At the end of the summer, five months after Dylan had turned 18, an amount which could be spent on short breaks had finally been agreed and a new short break provider identified. The new provider was based on the ‘independent living model’ rather than the residential home setting my instinct told me Dylan needed but, I told myself, perhaps he would cope.

A fresh crisis

Mulberry Lodge 016While Dylan’s overall budget was far more than he needed for one night a week I was uncomfortably aware that it wouldn’t be adequate once he left school. Dylan was settling in with his new short break provider when the social worker confirmed that his budget wouldn’t cover overnight breaks as well as full time day care.

What do I do? I wailed to the social worker one day. I don’t know what to do about this.

Which is more important to you? she asked. You need to choose.

I haven’t got a choice I pointed out. If I can’t get to work I can’t pay the mortgage.

Well then you’ll have to lose the respite.

But we will collapse, I said. I can’t manage without it.

Then you’ll have to get into crisis. If you get into crisis then we might be able to go back and ask for more money.

Another gap

Mulberry Lodge 020I couldn’t understand how moving from school to adult services meant Dylan would have to give up his short breaks – surely these needed to start increasing, if anything? Without short breaks, I explained to the social worker, I couldn’t manage; using all Dylan’s budget on day care so I could get to work would leave me exhausted. If that happened, I wouldn’t be able to take care of Dylan.

The economic arguments seemed to me to be obvious. With a small amount of extra support (for one night a week) I would be able to continue to look after Dylan at home. Without this support, I would not be able to cope and Dylan would have to be cared for by the Local Authority. Not only was this not in Dylan’s best interests it didn’t make economic sense to allow such a situation to develop; caring for Dylan full-time would cost the Local Authority four times the amount needed to enable him to stay at home. Parents who care for adults do this without any financial support; we are a hidden workforce. How short-sighted it seemed to me for the Local Authority not to support me to continue to care.

After I had exhausted all possible avenues I consulted a solicitor; I will share details of the legal action which provided a way forward (my original reason for setting up this blog) in a separate post. For the last year I have been living in a gap in the crisis: Dylan has been on an interim budget with a temporary Support Plan which combines some day and some short break provision. This has allowed me to get to work and enabled us to cope while negotiations about Dylan’s longer term care continue. However this week the gap in the crisis became another gap in provision.

Cornerstones and coping stones

Mulberry Lodge 035Dylan has been accessing short breaks with his adult sector provider for nearly two years; although the placement has now broken down it at least provided a period of stability during Dylan’s transition from school. I am sorry that it hasn’t worked but my reservations about the suitability of the provision had remained and all the issues which could have been predicted (lack of peer group, lack of space, lack of staffing) did indeed emerge. Yesterday, I bumped into a friend (also the parent of a young man with autism); I have to believe, I told him, that I will find something better for Dylan – that this will lead to something good.

I don’t think this is about being positive so much as needing to be strong through the setbacks. Some years ago I received a gift which included a jokey list of personal attributes. One of them was ‘good in a crisis’ which I remember made me laugh. Oh but it’s true, my daughter said: you are good in a crisis. I dismissed it at the time but this week I’ve drawn strength from that thought, steeling myself for what could be more difficult days ahead. Sometimes I visualise myself as a cornerstone, holding and supporting Dylan. This week I’ve had the metaphor of a coping stone in my head instead: how it goes on last, as the final piece, and how, once in place, it protects foundations and walls, channelling away the rain. Short break provision is critical enough, for some of us, to be at the heart of our ability to cope: when it goes wrong it can shake us to our foundations but when we get it right it is our coping stone.

The need to re-think

Mulberry Lodge 036While short breaks may work well for some families and in some parts of the country, the approach to provision needs re-thinking, particularly for children and adults with high needs. It isn’t acceptable for families to have to get into crisis in order to receive the resources they need. Some things which would help include:

  • more transparent and equitable referral systems
  • simple transition points with more effective  support for autistic children and adults
  • simple alternative systems for families seeking temporary support
  • more proactive support from social workers
  • more variety in the type of short break provision available for adults (including residential homes)

Short breaks enable some parents to go on caring for their autistic child into adulthood – extra investment in this provision would surely be money well spent.

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