Grief and Intellectual Disability: Telling, Funerals, Support

“I don’t think she’ll understand”: grief, intellectual disability, and the exclusion that makes it worse

There is a contradiction at the heart of how this sector handles death, and once you notice it you cannot unsee it.

The reason people give for not telling somebody with an intellectual disability that their mother has died is that they will not understand.

The reason they give for not taking them to the funeral is that it will be too much for them.

Both cannot be true. If the person cannot understand death, a funeral is not upsetting. If a funeral would overwhelm them, they understand perfectly well. The two justifications sit side by side in the same conversation, which tells you they are not really reasons. They are the shape that discomfort takes when it needs explaining.

The literature on bereavement and intellectual disability has a name for the practice: benevolent exclusion. People are not told when a relative or friend has died. They are kept from funerals, from viewing the body, from visiting the grave. They are left without any explanation for why somebody who used to visit every Sunday has stopped coming. And it is all done out of kindness, which is what makes it so hard to argue with.

The evidence says it makes things worse. Hollins and Esterhuyzen, working in 1997, found that exposure to bereavement cues, rather than avoidance, is important for recovery — and that complicated grief is more likely when people are excluded or unprepared.

Protecting somebody from a death does not protect them. It leaves them grieving something nobody has told them about, in a house where everybody else knows.

We support NDIS participants across New South Wales, and we have got this wrong in the past like everybody else in this sector. This guide is what we think good practice looks like.

What the research actually establishes

The field is not large but it is consistent, and a few findings matter.

People with intellectual disability grieve in essentially the same way as anybody else. Oswin’s and Hollins’s work established this and it has not been seriously contested since. The emotions are the same. What differs is the ability to articulate them, the degree of control the person has over their own circumstances, and whether anybody around them recognises what they are seeing.

Exclusion produces complicated grief. The Hollins and Esterhuyzen finding above is the single most practically important piece of evidence in this area: being included in the cues around a death — the illness, the news, the rituals, the talking about it afterwards — assists recovery, and being shielded from them does not.

Grief is routinely relabelled as behaviour. Services see a change in how somebody is acting and record it as challenging behaviour rather than as an emotional response to a loss. The literature describes this as part of a “double taboo” — death is difficult to talk about, disability is difficult to talk about, and the two together produce silence. It is also straightforward diagnostic overshadowing: the distress is attributed to the disability or to a mental illness rather than to the thing that actually happened.

Losing a parent is a different order of loss. This is the point most worth absorbing. For many people with intellectual disability, the parent who dies was simultaneously their main communicator, their primary carer, their advocate, their companion, and the person who held the entire history of their life. Losing them is not one loss. And it frequently triggers several more at once — a move to temporary accommodation, a change of carers, a different routine, the loss of contact with a neighbourhood and a community.

So a person may lose their mother and their home and their workers and their daily life in the same month, and be expected to cope with it in a strange bedroom, surrounded by people they have never met, with nobody having explained any of it.

Support is patchy. Read and Elliott, surveying bereavement support for people with intellectual disability in the United Kingdom in 2007, described provision as “patchy at best.” Nothing suggests Australia is systematically better.

And the hopeful finding. Dowling and colleagues, in 2006, found that generic bereavement counsellors could work effectively with adults with intellectual disability after small practical adjustments. That matters enormously, because the usual objection — that there are no specialist services — turns out not to be the barrier people assume. An ordinary bereavement counsellor, given some guidance about communication and pacing, can do this work.

Why people exclude, honestly

It is worth being fair to the reasons, because dismissing them does not change anybody’s behaviour.

“They won’t understand.” Sometimes partially true, and not a reason for silence. Understanding is not binary, and a person who grasps only that somebody is gone and that everyone is sad still needs that acknowledged rather than denied.

“It will upset them.” Yes. It is upsetting. Being upset about a death is the correct response to a death, not a complication to be prevented.

“I can’t cope with their reaction while I’m grieving myself.” This is the honest one, and the literature names it: family members worry about managing the person’s emotions while they are in pieces themselves. It deserves sympathy rather than criticism — and it is an argument for somebody else doing the telling and the supporting, not for nobody doing it.

“We didn’t want to spoil the funeral.” Said more often than you would hope. The underlying fear is of noise, of distress, of other people’s discomfort.

“Nobody thought of it.” The most common reason of all. In the chaos after a death, a brother with Down syndrome living two suburbs away simply does not get rung.

How to tell somebody

Do it as soon as you reasonably can, and do it in person.

Use the words. “Died.” “Dead.” Not passed away, not lost, not gone to sleep, not gone to a better place, not we lost Grandad. Euphemisms are the single most consistently identified error in this field, and the reason is obvious once stated: a person told that Mum has gone to sleep may become frightened of sleeping, and a person told she has gone away will wait for her to come back.

Keep it short and concrete. “I have some sad news. Your mum died this morning. She was very sick and the doctors could not make her better. She is not coming back. I am very sorry.”

Say that it is sad, and let your own face show it. A person reading a flat delivery of terrible news gets a confusing signal.

Then stop talking. Let them react however they react — crying, nothing at all, anger, a question about lunch. All of those are normal.

Answer what they ask, honestly. Including the hard ones. Where is she now. Did it hurt. Will you die. Will I die. Honest, simple, brief answers are better than reassurance that will later be shown to be false.

Expect to repeat it. Many times, over days and weeks, sometimes for much longer. This is processing, not a memory failure, and correcting somebody or expressing impatience is damaging. Answer again, in the same plain words, as if for the first time.

Tell them what happens next. The funeral, who will be there, whether they are going, what will change, what will not change. Uncertainty is its own distress.

Use accessible resources. The Books Beyond Words series includes picture books about death and bereavement designed specifically for people who do not read, and they are genuinely good. Easy Read material on death and grief exists. Use them alongside the conversation rather than instead of it.

And address the person directly, even when family and workers are in the room. Being talked about while present is its own injury.

Funerals and rituals

The default should be inclusion, with preparation, and with a genuine choice.

Prepare them for what will happen. Where it is. Who will be there. How long it will take. That people will be sad and some will cry. That there may be a coffin, and what that is. Whether there will be a burial or a cremation and what that means. What the room will look like.

Offer a real choice, which means a choice they could actually decline. Some people will not want to go, and that is legitimate and should not be overridden either.

Give them something to do. Carrying flowers, handing out orders of service, choosing a song, putting something in the coffin, saying one sentence. Having a role turns a bewildering event into a participation, and people frequently remember their job for years.

Plan an exit. Somebody sitting near a door with them, with explicit permission to leave at any point and no fuss about it.

Consider viewing the body, as a prepared choice rather than an assumption either way. For some people it answers a question that words cannot.

And if they could not attend — because they were not told in time, or were too unwell, or chose not to — do something afterwards. Visit the grave. Light a candle. Look at photographs. Hold a small thing at the house. An absence of ritual is itself a problem; the ritual is doing work.

Afterwards, keep talking about the person. Photographs up, not taken down. Mentioning them by name. Marking the anniversary. Memory boxes. People are frequently surprised that somebody with an intellectual disability brings a dead parent up two years later, and the surprise is the problem, not the bringing up.

What grief looks like

The reason it gets missed is that it rarely arrives as crying.

• Behaviour change — new or increased aggression, agitation, self-injury, refusing things
• Withdrawal — going quiet, disengaging, staying in their room, declining activities they loved
• Searching — looking for the person, going to the window, waiting, asking where they are
• Asking the same question repeatedly
• Apparent indifference. This is important. No visible reaction is not evidence of no grief, and it is routinely read as proof the person did not understand. Delayed and muted responses are common.
• Regression — loss of skills, continence changes, needing more help
• Sleep and appetite changes
• Somatic complaints — pain, stomach aches, feeling unwell
• Clinginess, or fear of other people leaving
• New anxiety about separation, including distress when a worker goes off shift
• Talking about the person as though they were alive
• Anger at the people around them, including at whoever told them

And delayed grief, which is the one that causes the most diagnostic confusion. A reaction may surface weeks, months or years later — frequently triggered by an anniversary, a photograph, another death, a move, or a worker leaving. By then nobody connects it to the original loss, and the person acquires a behaviour support plan or a psychiatric referral for something that is grief.

Which produces the practical rule: when somebody’s behaviour changes and nobody can explain it, ask what they have lost — recently, and in the last few years. Before reaching for a mental health explanation or a functional behaviour assessment. The literature is explicit about this, and it is free to do.

The losses nobody counts

Bereavement is not only about death, and for people in supported accommodation the losses accumulate in ways that are invisible to the people causing them.

A housemate dying. Somebody they have lived with for twenty years. Frequently handled worse than a family death, because nobody considers the surviving residents to be bereaved at all.

A support worker leaving. This one deserves emphasis because the sector is blind to it. A worker who has done somebody’s personal care four days a week for six years, who knows how they like their tea and what makes them laugh, leaves for another job — and it is processed as a staffing matter. For the person, somebody they loved has disappeared, often with no notice, sometimes with no goodbye, and nobody has called it a loss. With turnover rates in this sector, a person may experience this several times a year.

A move. Of house, of room, of day program.

A sibling moving interstate, or a parent going into aged care.

Losing contact with a friend when one of them moves.

A pet dying.

A worker going on maternity leave, or a long-term coordinator changing.

The research recommendation is direct and easy to implement: record each person’s bereavement and loss history on file — deaths, moves, workers who left, friendships ended, pets. Then when behaviour changes, there is something to look at.

And on worker departures specifically: give notice where possible, say goodbye properly, explain that the person is leaving and that it is not the participant’s fault, and let them have something — a photograph, a card. It takes ten minutes and it is the difference between a loss and an abandonment.

When the person is the one who is dying

A brief note, because it belongs here.

The same instincts apply and the same exclusion happens — the person is not told they are seriously ill, on the grounds that they will not understand or will be frightened.

They will know something is wrong. They notice hospital visits, hushed conversations, tears and changed treatment. Being frightened without an explanation is worse than being frightened with one. They also cannot consent to treatment they have not been told the reason for, and cannot express what they want about their own remaining time if nobody has told them there is a limit to it.

Tell them, with support, in plain words, over several conversations, following their lead on how much they want to know. The consent and capacity material in this library covers the formal side.

Who can actually help

Generic bereavement counsellors, per Dowling and colleagues, can work effectively with adults with intellectual disability after small practical adjustments. So the absence of a specialist service is not the barrier it appears to be. What helps is briefing the counsellor beforehand: how the person communicates, what pace works, what to avoid, and how long is realistic.

Counsellors and psychologists with disability experience, where available.

GriefLine on 1300 845 745, and Lifeline on 13 11 14, available 24 hours.

The palliative care service’s bereavement follow-up, where one was involved — ask whether it extends to housemates and workers, not just family.

Books Beyond Words and accessible Easy Read material on death and grief.

Peers. People who have lost somebody, talking to each other, works as well here as anywhere.

And the ordinary people around them. Most grief is not managed by professionals. It is managed by somebody sitting with you, saying her name, looking at photos, and not changing the subject.

What a provider should actually do

• Have a position on this before it happens. A written approach to death, bereavement and loss, so that a house manager at 7am is not inventing one.
• Never exclude by default. Telling the person is the default; not telling requires a reason that survives scrutiny.
• Keep a loss history for every person — deaths, moves, workers who left, friendships ended, pets.
• Tell the family what the evidence says, kindly, where they want to exclude somebody. They are usually acting out of love and have never been told that it backfires.
• Prepare and support attendance at funerals, with a job and an exit.
• Mark deaths in the house — a photograph, a candle, saying the person’s name, something at the anniversary.
• Handle worker departures as losses, with notice and a goodbye.
• Review behaviour change against the loss history before referring to behaviour support or mental health.
• Train workers that grief presents as behaviour, that euphemisms harm, and that repeated questions are processing.
• Do not clear a dead person’s room quickly. The housemates are watching and they draw conclusions.