SIL Handbook Part 8: Staying Involved

The hardest part of the move happens after it

Part 7 covered what happens when a home has to change. This part covers what happens to you. A parent who has been the roster, the record keeper, the advocate and the night shift for twenty years does not stop being those things because a lease was signed.

The move is often described as letting go, which is both unhelpful and inaccurate. Nothing is being let go of. A set of jobs is being handed over, unevenly and over months, and a relationship is being handed back. Those are different processes and they run at different speeds.

What to hand over, deliberately

Hand over the tasks, in writing, rather than by attrition. The things that should genuinely move to the provider are the operational ones: the medication routine, the appointment calendar, the shopping, the laundry, the day to day risk decisions.

The reason to write them down is that undocumented knowledge does not transfer, it just gets lost and then rediscovered by trial and error, usually at somebody's expense. The handover file matters here: what the morning routine actually is, what the early signs of an unwell day look like, which foods are a no, which noises are a problem, who the person will and will not accept help from.

Hand over the relationships too. Introduce the GP, the pharmacist, the therapist. If every professional in a person's life only knows how to reach you, then you have not handed over anything, you have just added a step.

What to keep hold of

Three things, and they are not the ones families expect.

The history. You are the only person who has known this person for their whole life. Staff turn over. Providers change. Nobody else can say that a particular reaction goes back to a hospital stay in 2011, and that context prevents a lot of bad decisions.

The plan side. Reassessments, evidence, funding. This is where family time is worth the most, because it is where a mistake costs a year. Our guide to what a reassessment actually needs covers it, and it is a job that suits somebody who is not on shift.

The relationship. Being the person who visits because they want to, not because a task needs doing. This is the one that gets crowded out first and matters most.

The first three months

Expect it to be worse before it is better, and expect to be the last to relax.

There is usually a fortnight where everything is fine, followed by a slump when the novelty wears off and the house becomes ordinary. That slump is normal and is not evidence the move was wrong. Providers see it constantly; families see it once.

Visit often at the start, then deliberately less. A pattern of dropping in daily is hard to change later and can hold a person in the role of your child rather than a resident of their own house. Agree a rhythm with the person and the house, and put it in the support plan so nobody has to renegotiate it every week.

Do not do tasks on visits. If you arrive and start cleaning the bathroom, three things happen: the house learns it does not need to, your visit becomes a shift, and the person you came to see spends the afternoon watching you work. Our piece on the first ninety days covers the operational side of the same period.

How to raise something without taking over

You will see things. The question is how to raise them so they get fixed rather than defended.

Be specific and dated. "The evening shift seems rushed" invites reassurance. "On Tuesday and Thursday last week dinner was at 7.30 and Sam went to bed without a shower" invites a look at the roster.

Go to the house first, then the coordinator, in that order, unless it is a safety matter that needs escalating immediately. Skipping the house teaches the house that you skip it.

Ask what you can do rather than instructing. Families have more influence than they think and use it less effectively than they could, usually by spending it on small things. Pick the two that matter.

Where something is genuinely serious and not being resolved, the NDIS Quality and Safeguards Commission is the body to approach, and it is better placed to explain your options than we are.

When family involvement goes wrong

It goes wrong in two directions, and both are common.

One is withdrawal. A family that steps back entirely, often out of a belief that this is what letting go means, and the person loses the only continuity they have. Staff change every year or two. Nobody else is permanent.

The other is running the house from outside. Daily calls to the coordinator, a roster kept in parallel, decisions relitigated. It is exhausting for everybody and it teaches the house to route around you, which is the opposite of what you want.

The middle is not a compromise between them. It is a different position: engaged on the things only you can do, deliberately hands off on the things somebody is paid to do.

The person's own view

Ask, privately and regularly, and be prepared for an answer you would rather not hear.

Some people want much less family involvement than their family assumes. Some want a great deal more. Both answers are legitimate and neither is fixed, and the answer at three months is often different from the answer at three years.

Supported decision making is the frame worth using here: helping someone reach their own decision rather than reaching it for them. It is slower and it holds up better.

A practical version: for anything you are about to decide, ask whether you are deciding it because it is genuinely yours to decide, or because deciding it is a habit twenty years old. The second category is larger than it looks.

What good looks like a year on

The house runs without you and you know how it runs. You see the plan documents and not the shift notes. You visit for a reason that has nothing to do with a task.

The person has things in their life you did not arrange, and tells you about them afterwards. That last one stings a little and is the clearest sign the move worked.

And when something does go wrong, which it will, you are the person who gets told early, because the house knows you will help rather than take over.