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?
As 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.
This 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.
Our 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).
Although 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
While 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.
I 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
Dylan 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
While 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.