Give supported choices the time and tools they need

What we found in the news

NICE’s April 2018 guidance on care and support for people growing older with learning disabilities includes a practical recommendation on decision-making:

“finding out their views, encouraging them to take part”

Here, NICE uses the UK term learning disabilities for intellectual disabilities, involving difficulties with intellectual and everyday functioning that begin in childhood. Its glossary distinguishes these from specific learning difficulties such as dyslexia.

The recommendation calls for support to express views and make decisions, alongside the applicable capacity framework. This is UK guidance for a particular population, not a reason to assume that a diagnosis determines someone’s decision-making ability. Read the NICE recommendations (opens in a new tab).

Why this matters to us

An invitation to attend a meeting is only part of involvement. A person also needs a way to understand what is being discussed and to communicate what matters to them.

A team may have prepared a detailed agenda while leaving no time to prepare the person. The choices may be described in abstract language. A familiar supporter may be absent. These are practical features of the meeting that the service can examine, rather than treating participation as a quality the person either has or lacks.

People receiving support bring knowledge of their own routines, relationships, and preferences. That knowledge belongs in the plan.

Prepare the choice before preparing the paperwork

Consider an illustrative discussion about changing a weekly community activity. The person wants to understand two possible venues. The coordinator brings clear photographs of the entrances and rooms, and offers time to look at them before the meeting.

The pictures are a starting point, not a decision aid that has been validated for every person. The team still needs to find out what communication approach works for this individual. A visit, objects, written information, or a different conversation might be more useful.

The choice also needs to be real. If only one service is available, presenting several pictures as equal options would be misleading. Explain the actual possibilities, including what remains uncertain.

Let support help the person speak

A trusted supporter may notice that an explanation was too fast or help the person use a familiar communication method. That contribution can be valuable without replacing the person’s own response.

The team can agree who the person wants involved, what that support will look like, and how to check whether the account being recorded reflects their preference. It may be necessary to pause and return to the discussion with appropriate specialist help.

Professionals must follow the applicable consent and capacity requirements. A website article cannot resolve those decisions. The practical principle here is to make support for participation part of preparation, rather than moving directly from difficulty communicating to someone else taking over.

Keep the reason for the choice visible

An activity may appeal because a friend attends, because the room is quieter, or because the travel time fits a familiar routine. Recording only the selected option can lose the reason it mattered.

That reason is useful when arrangements change. If the venue moves or the friend stops attending, a team can ask whether the choice still works. The person should have opportunities to reconsider, not be held to an earlier preference because the form is complete.

For managers, useful review questions include whether preparation time was available, whether information was accessible, and whether staff knew where to obtain additional communication support. Counting attendance at meetings will not answer those questions.

The genus connection

Today, genus can support authorized communication, calendars, and agreed tasks within a configured care community. These tools can help organize a visit to a possible service, share suitable public information, or track a promised follow-up.

They do not assess decision-making capacity or turn a picture into an accessible choice for everyone. The person and their qualified support team determine what help is appropriate. Our interest is in making the preparation and follow-through easier to coordinate, so participation has room to happen.

A preference deserves more than a box on a form. It deserves the time and support needed to understand it.

One question to take away

What could your team prepare differently so that the person has a better chance to understand, express, and revisit a choice?