INDEPENDENT LIVING TRIALS

The importance of Independent Living Trials in the rehabilitation process

Natalie Mackenzie, director of BIS Services, explores the role of Independent Living Trials in a client’s journey, what success might look like, and what challenges potentially await for client and MDT alike

Independent Living Trials (ILT) referrals always elicit excitement in the BIS office, favoured by the team who revel in the setting up of a new chapter of a clients rehabilitation and recovery. Perhaps it’s the prospect of the data collection, the buzz around finding a new home for a client, but mainly, it’s the opportunity for further growth for the client in question; the next phase in their journey. They are not without their challenges of course, and over the years the definition of success has become more varied and complex. So why do clients engage in them, and what do they actually look like. ILTs come in all shapes and sizes, like everything in neuro rehabilitation, they must be client specific and meet the needs of their wider community.

The rationale

ILTs often signify a shift in rehabilitation, with the focus moving from being supported to being support facilitating further improved function, moving away from the family unit or another rehab setting. It’s a big step. Families can often be reluctant, safe in the knowledge that their loved ones are always with them and secure, and fearful of what lies outside of this. Will their loved one be safe, will they be lonely, will they be unhappy? Conversely, it is the need to preserve the family unit that ILTs are progressed. This is often the case when the client has moved back into the family home post injury, having previously left the nest. Dynamics change, roles change, the environment can be more challenging. ILTs can restore the previous status quo, allowing a bridge back to pre injury life. This is something that has to be handled sensitively and the key here is a cracking MDT with an experienced Neuropsychologist to aid in the navigation, and of course the right timing.

The planning

It is music to our ears when we are in an MDT and the team begin discussing the potential for an ILT in four to six months; time to source property, time to gather baselines, and time to prepare the team. Whilst still music, the calls which begin with “there’s been a change in circumstances, we need an ILT in 4 weeks” isn’t always as in tune! Teams need to be assembled (Marvel style sometimes), MDT schedules need to be accounted for, with each key therapist in place prior to the placement and vocational or educational schedules need to be factored in. Another part of the planning is the gradual introduction into full time trial, so often they can fall apart if the team have not factored in this important element, both to allow the client adjustment time to their new schedule and environment, but also to ease the concerns of the family. This graduated approach needs to be longer than might initially be anticipated. Of course, from a costing perspective the team need to be retained during this period of flexibility. Ideally, current RAs will move into the ILT. Ideally, but it isn’t always possible. Other conflicting client schedules, study commitments and so on may hamper that nice shift. We also often have to consider that some of the current RAs skills and task focus with the client may not be the right fit for an ILT.

A large team of skilled rehab assistants is needed, for the obvious reasons of scheduling and cover, holidays and sickness, but also for peer support and to avoid burnout. ILTs are tough. The team are observing everything, all the time. Training for an ILT is slightly different, with a focus on graded exposure, tapering, observation, feedback to aid insight and metacognitive skills, motivating, prompting, sleep hygiene, mood, fluctuations, client sickness, impact of friends and family. And more. Multi agency working brings even more challenges, to ensure everyone is providing a consistent, holistic and empowering approach. It doesn’t always work out that way, so communication is key, constantly. ILTs may also start out as a six-month plan, end early or extend much longer. Success can be dependent on the retention of staff and/or their ability to extend past the planned timeframe, which can be a task with high calibre staff.

The challenges

One may assume that the clients want to progress to more independence, a step closer to achieving their goals, a step closer to more autonomy and a step further away from acute settings. But it’s not always this simple. The post-injury effects on mood, anxiety, motivation and so on often ramp themselves up at this juncture. We expect it, we plan for it. But the clients often don’t know it’s coming. This anxiety, this step into the new, potentially unknown can often hit them sideways. Not often exhibited through straightforward “No” or “I don’t really want to”, the team is met with subtle resistance. The worktops aren’t the right colour, the garden isn’t South facing, the bus stop is too far. If you have tried to source a rental property in the past two years, you will know all too well what a rarity the perfect place is. Hard to explain that to our clients. The search can go on for what seems an eternity, and that’s even before we get to the part of explaining the up front payments to the landlord or their agent. The furrowed brows that the boxes aren’t being ticked as expected for annual earnings or guarantors. Some simply just say no, too complicated. And you can bet your bottom dollar that no is on the house with the correct garden, worktop and a bus stop 2 minutes away. Recently, a large consideration has been the use of substances and alcohol when embarking on an ILT. Behavioural management plans, empowerment-based approaches are key here, but clients often fear what happens away from the less rigid ‘rules’ of home life. It can be a Hoover damsized barrier, and once again, a large amount of client specific flexibility is called for, just to get them through the door. Then of course, what happens a few weeks down the line when autonomy increases, and plans begin to be pushed back against? More adjustment, more flexibility, whilst still maintaining focus on the job at hand- increased independence. It is not straight road, that is for sure. I often allude to these trials as being akin to the Milton Keynes roundabout fest, lots of twists and turns, a number of missed exits but a general move in the right direction. The impact of substances on the success of an ILT is a big topic, and one we will revisit again. Periods of challenge can simply happen during the summer months, when therapists are on leave, educational or support placements are on breaks, which brings a change in routine that needs to take place, but with not enough time to gradually change, and even less to taper off. You can bet that bottom dollar (if you still have it from the first bet), that most problems will rise their head. Changes to routine and structure have a big impact. Let’s not also forget to address the potential feeling of freedom that the client can misinterpret and perceive as a period of “recreation”, shall we say. Also exhibited in sudden party invites, a sudden influx of “visitors” and potentially a slightly increased alcohol consumption, akin to the turning 18 behaviour some of us may recall. The loss of an RA for one reason or another adds further challenges. This can be due to them moving onto another role, sometimes because the amount of time spent between client and RA is too much and both need a break. Sometimes, because the relationship has broken down irreparably, often due to a difference or opinion, it can be as simple as that. I think we can all agree that the rigidity of some clients can be a hard mountain to overcome. The client (and sometimes the team) underestimates the intensity of these placements, and if not adequately prepared for can prove the straw that breaks the camels back.We must all expect it and have contingencies, but this takes time, starting from scratch sometimes without impacting the ILT and the needs of the clients. From a costings perspective such inevitable changes must be budgeted for.

How do we define success?

Generally speaking an ILT is embarked upon not with the overall goal of the client living fully independently, but to determine if they actually can. Their determination of if they want to do it is also a key factor. Success may not mean a client lives independently. Sometimes success is actually quite the opposite. Having left the less rigid but more subtly scaffolded home or rehab environment, clients may find great success in increasing their insight about what support they actually do need, what prompts they require. Their metacognitive skill improvement is often the most sought-after outcome, whether this is coupled with a reduction in support or even an increase. Success is also measured by the level of collaboration and communication within an important inter disciplinary team, who embark from the outset on a client centred, empowered approach, who are experienced in positive risk taking, reflective practices and overall expectant of the challenges that a complex period of rehabilitation such as an ILT brings.