Elliott, my eldest son, will be 18 in the summer. His lumbering frame – all 6’4” of it – clatters around the house in deep-throated guffaws as I write this and it’s hard not to wonder: “Where did my little boy go?”

It seems like a heartbeat ago that I was in a London hospital, gazing on him as a newborn and promising him a world filled with joy, adventure and love.

But “Where did my little boy go?” is a loaded shotgun of a question. Where did he go?

That boy was never really there.

Sure, those early days came with all the sleepless nights and smelly nappies you expect when you first become a parent. But, for Elliott, they never went away.

Elliott never learnt to talk. Never learnt to dress himself. Never learnt to read. One by one, Elliott missed milestones that his friends surged past. I say friends. He never really made those either.

Each milestone missed was a step away from the life I thought lay ahead for him and for us.

Elliott was diagnosed with autism aged three. At the time, I had no real idea what that meant.

So I did what every parent does when they receive a life-changing diagnosis about their child; I read the books, joined the support groups and trawled the internet searching for something to help me understand what had happened.

The NHS specialists’ conclusions were opaque, doing little to help us understand or to plot a course forwards. We paid to see private sector specialists. Same conclusions, different price tag.

We found ourselves at the extremities of the autism spectrum. In a world that was growing to understand these disorders as ultraviolet, Elliott was living a life that was infrared.

In the end, we stopped saying he was autistic and instead said we had a son with learning disabilities – a term that didn’t come with any expectation beyond an understanding that things were hard for Elliott in a way that most people could never comprehend.

What can I tell you about Elliott?

I can tell you of his love of CBeebies.

I can tell you how hard fought each little step on his learning journey is.

I can tell you of the hours he has spent happily in the back of our car, watching the world go by.

I can tell you how things overwhelm him and flip the ordinary into chaos without warning.

I can tell you how angry I am that this is the hand he was dealt.

I can tell you how proud of him I am.

Because, whenever I have shared the story of our family – be it in tweets on TV or in podcasts – it has been with two truths in mind.

Being Elliott’s dad has been the best thing that ever happened to me.

Being Elliott’s dad has been the worst thing that ever happened to me.

That these two truths are hard to reconcile doesn’t make them any less true.

In talking honestly about what it’s like to be a parent to a child with profound learning disabilities, the good and the bad shared with equal candour, I hope to make the world a little less infrared for people like Elliott.

And, ultimately, I still hope to keep those promises I made to Elliott when he was a newborn and I guess my hopes for him now are not so different from my hopes back then.

To be happy and to be loved. To hope for those is enough.

I recently went to meet a tenant in her flat to check she was receiving the appropriate support from her provider and was delighted to be turned away.

The woman, in her 30s and living in north London, felt I did not look enough like the photograph I sent her ahead of my visit (it was an old one).

I was delighted because her decision to refuse entry reflected her right to choose who should cross the threshold into her one-bedroom, ground-floor flat. Our meeting went ahead after she called her support worker to check.

Even if you need significant support to live in your own home, with the responsibilities of having to pay bills and save up for a sofa, it comes a sense of empowerment and pride.

As a social care and health consultant, I have seen so many people thriving in supported living, like the tenant I visited.

Supported living means people have their own tenancy that is not directly linked to their care and support. This enables more control over who supports you, how you spend your money and who you live with.

It will not work for everyone – and sometimes councils see this sort of housing as a placement rather than as a home with a tenant’s rights and responsibilities – but we are being more creative about trying to make it possible.

Despite this, the latest Office of National Statistics data shows around two-thirds adults with a learning disability are still living with their parents, compared to approximately 18% of people with no known disability.

There was a big push at one time for social landlords to build and adapt homes for people needing additional support, and funding to make this happen.

The Supporting People programme, introduced 20 years ago under the Labour government, provided ringfenced funds, a framework and clear guidance to regulate the sector locally.

However, with a change of government, the programme took a back seat, and supported housing became less regulated and inappropriately funded. The ringfence around council funding for housing-related support services was removed.

The government must find a way to identify the landlords that are in it for the right reasons

There is now no specific budget for supported living services and councils do not have a statutory duty to ensure people are in appropriate accommodation; their only responsibility is to the Care Quality Commission on the care aspect.

Supported living has been criticised for becoming a playground, with organisations merging and rebranding at such a rate that tenants have virtually no chance of even knowing who their current landlord is.

And, as with all social housing, demand has outstripped supply, leaving the sector chasing its tail. Consequently, the option has been to turn to the private sector.

For private landlords and developers, offering homes to those with support needs while making a reasonable profit could be an attractive option.

Councils with vision have responded, helping landlords understand the requirements of supported living, and working with families and carers to help people move into their own home and towards something resembling equality in housing options.

But, to reach equality, supported housing needs a hand up, with the markets and economic problems working against it.

The government must acknowledge that supported housing can cost more. It must find a way to identify the landlords and developers that are in it for the right reasons – and support them accordingly.

It’s great that people with learning disabilities now officially have rights to a family and relationships.

Historically, this has been a fraught issue.

The policy motivator until the mid-20th century was fear that the “feeble minded” would have more children than others, leading to “a terrible danger to the race”, as Winston Churchill wrote to prime minister HH Asquith in 1910.

At the time, there were two ways to prevent people from having children – keeping the sexes apart or sterilisation.

In the UK, segregation was adopted; involuntary sterilisation was never formally sanctioned. In institutions, men and women met only when supervised by staff.

Many people remained outside these institutions. What of them?

I was shocked to find government forms from the 1930s that asked officials checking up on those living with families: “Is it considered that the control available would suffice to prevent the defective from procreating children?” If the answer was no, placing them in an institution would be considered.

The pill was a game changer. Institution staff made sure women took it (many patients were probably unaware what it was for) and could feel permissive about heterosexual relationships between patients.

However, people in the community could not be relied upon to take the pill. The government refused to officially countenance involuntary sterilisation but there is no doubt it was widely practised.

I once interviewed a couple who in 1970 had asked their GP if their daughter, then 20, could be sterilised. She never forgave them for taking away her ability to have kids.

But, they asked, what were they to do? She liked sex, and they did not want the responsibility for helping her bring up children.

Related to this is the lack of support for well-woman issues – to say nothing of poor diagnosis and treatment for female-specific conditions and cancers

In Know Me As I Am, a 1990 anthology by people with learning disabilities, one contributor said: “People like us don’t have babies. No one at the centre does apart from staff. Some people have their stomachs taken out.”

Today, women with learning disabilities are nearly four times as likely to use long-acting reversible contraception (LARC) as other women – a rate of 46% versus 12%, according to Public Health England.

What little research has been done indicates these women are prescribed LARC (or other non-barrier methods such as the pill) at a younger age than others, stay on them for longer and, astonishingly, remain on them even if not sexually active. Reasons offered include “to manage menstruation” or in case they are taken advantage of. We do not know how many women are taking contraception for these reasons – we should.

What’s the message here?

At no time has the sexual health of women with learning disabilities been the primary concern.

Many would prefer it if women with learning disabilities do not become mothers. But the issue is bigger than a neglect of women’s desire to become parents.

It extends to a failure to protect from abuse, from sexually transmitted disease and from unwanted (by the woman herself) pregnancies. It’s a failure to provide support for women to have whatever safe and physically and emotionally rewarding sexual relationships they choose. It’s a failure to help draw boundaries to protect women from exploitation.

Related to this is the lack of support for well-woman issues – puberty, menstruation and menopause – to say nothing of poor diagnosis and treatment for gynaecological conditions and female-specific cancers.

The manager of a residential home once told me she was shocked that residents were not allowed out of their rooms between 10pm and 7am. Nowhere was this written down – it’s just what happened until she changed it.

When I asked about overnight visitors, she said yes – then added that families had a lot of interest and staff would have to check with them.

History tells us that looking at the policy is not enough. We need to look beyond what people say they do and at what actually happens.

Photo: Jacqui Brown/Flickr

After my son was born two years ago, I had to stay in hospital for a while. Despite fantastic care on the delivery ward, the postnatal wards were grim, particularly during Covid.

Us mothers were ruled by an institutional clock that dictated when we slept (rarely), woke up (early), got pain relief medication (not until the trolley came around) and when we should be up and about, regardless of pain.

Some midwives and auxiliaries were kind, but others approached us as problems to be managed, patronised, perhaps even punished.

Nobody even bothered to tell us when the hospital decided to ban our partners’ visits.

Late one night, in pain and distress, I discharged myself.

Arriving home, I was struck by the contrasts: here was a place where I felt loved and safe, and belonged.

Welcome home bunting on the wall, a bed made up downstairs until I could manage stairs, mince pies by the fire, tea in my favourite mug, the cat curled up next to the baby’s basket.

Pain relief when needed, not on somebody else’s clock. The privacy to cry, yet people around for support.

I could rest, relax and enjoy the new addition to our family. When I took a turn for the worse later that week and was offered a hospital bed, I preferred to stay at home.

This powerful contrast between the inner workings and subjective experience of an institution and the life I enjoy in my home came shortly after I finished writing a book, Deprivation of Liberty in the Shadows of the Institution

The book tells of how, not so long ago, hundreds of thousands of people spent their lives in large institutions. These ranged from 19th century asylums and workhouses to 20th century “mental deficiency colonies”, later called “mental handicap hospitals”.

Sociolegal historian Clive Unsworth calls this the carceral era. During the second half of the 20th century, these large institutions were gradually closed and the buildings demolished or repurposed.

People now lived in the community, in a variety of settings from care homes to supported living, with some in an ordinary house or flat.

Unsworth called this the post-carceral era, an era of policies and initiatives promoting ordinary or normal lives in homes in the community, elevating autonomy, independence, person-centred care and choice and control.

The problem is that many people living in care homes, supported living or private homes do not enjoy the autonomy, independence, person-centred care, choice and control the pioneers of community living aspired to.

Some do – and we need to hold on to this, because realising this for everyone should be the central aim of social care.

The dismaying reality is that many community settings are, in effect, mini institutions.

In care settings, we talk about personalising space precisely because of a background assumption of depersonalised, institutional spaces

More people are detained in Britain’s care homes than in its prisons. There are more than 80,000 people in prison in England and Wales. In 2021-22, there were 88,960 applications to authorise deprivation of liberty in nursing homes and 80,225 from residential care homes – a total of more than 168,000 applications.

While local authority backlogs meant not all the applications were authorised and some may relate to the same person, it is clear that a huge number of people are categorised as deprived of their liberty in care homes.

The problem is that we regularly conflate “homes” with “institutions”. We hope that, by calling a place a home, it sets us apart from our carceral past yet, often, the inner dynamics remain institutional.

This presents problems for courts and regulators in deciding whether a place is a private home or regulated premises.

It also means that, as community living advocates, we need to think deeply and carefully about what we mean by “ordinary homes”.

Homes and institutions are different kinds of jurisdictional space. Jurisdiction means the power to speak the law – that is, to lay down or interpret and apply the rules.

Homes are quasi-sovereign jurisdictions, where those living in them lay down the rules: an Englishman’s home is his castle. Institutions are governed by authorities, not those living in them.

This is illustrated by the Rampton smokers’ case (R (N) v Secretary of State for Health, R (E) v Nottinghamshire Healthcare NHS Trust [2009] EWCA Civ 795).Patients in high-security Rampton Hospital challenged the smoking ban, arguing that the hospital was their home so they should be allowed to smoke there.

Judges were sympathetic but observed that the freedom to do as one pleased varied depending on where one was. Although an activity might be protected from arbitrary interferences in a private home, similar protection would not apply to patients in public hospitals.

Homes are associated with autonomy, privacy and a locus of control. People living at home decide who invite in and have the freedom to come and go as they please. Small, everyday choices, such as smoking, are important. It is well documented that the erosion of such micro-choices is damaging to wellbeing and health.

So, when deciding whether a place is really a home, we should ask: does this person enjoy privacy, and have the freedom to make everyday decisions and control the threshold? Who, ultimately, makes the rules in this place?

Home is also a place of belonging and rootedness. In contrast, institutions tear up our roots and can restrict, threaten or even sever our critical relationships.

If we want a place to be a real home, we should ask whether the person is living with others they want relationships with, are able to enjoy other critical relationships fully and are free to form new relationships and offer hospitality.

And is their home in a community or truly part of one?

Homes are critical spaces for expressing and sustaining identity. Yet, in care settings, we talk about personalising somebody’s space (usually just their bedroom) precisely because of the background assumption of depersonalised, institutional spaces.

Nobody living in a regular home talks about personalising their bedroom. Yet there is an entire industry devoted to making care services look more homely. But these are simulacra; no amount of carefully positioned doilies and knick-knacks can replicate the subtle, complex and idiosyncratic aesthetics of a genuine home.

What is a home?

So what, then, is a home, and how does it differ from an institution?

The difference does not lie in the buildings, nor in legal or regulatory status, nor in what other people want to call it. Homes, as I argue in my book, are critical decision spaces for the flourishing of the self.

They are places where we are can critical decisions about where we live, who we live with and who comes into our home to support us – the kinds of decisions reflected in the right to independent living under the Convention on the Rights of Persons with Disabilities – as well as the everyday micro-decisions that make up our lives, our selves.

Being able to make critical decisions brings a sense of privacy, safety, connectedness and belonging.

Even people who are unable to decide under mental capacity law still have agency. They can still express what brings them happiness, connection and a sense of safety.

They still weave patterns of meaning into the world around them. A meaningful home for them – as for everyone – is living arrangements that reflect and sustain that.

Lucy Series is a lecturer at the School for Policy Studies, University of Bristol

Grace Currie: artwork; Helter Skelter: photography