Learning difficulties and what happens when parents die

“Get a job, fall in love and find a home of your own.”

These were the life goals Ellie harbored after her mother’s cancer diagnosis prompted a serious conversation about her future.

There are fears about what will happen to thousands of adults with severe learning disabilities when their parents die – 75% of whom believe they have never moved out Charity Mencap.

But a group of young disabled friends want to “change the system” and build their own house where they can live with carers.

At her mother’s house on the Gower Peninsula, Ellie Lane is keen to show off her bedroom.

It has a not-so-subtle Harry Potter theme.

The 24-year-old’s favorite character, Draco Malfoy, appears on sheets, posters and life-size cardboard cutouts.

She hopes this collection will soon accompany her into her own home.

Not long ago, Ellie’s mother Jane was diagnosed with cancer.

It was the kind of health issue that led to a serious conversation about the question: What exactly did Ellie want from her life?

The answer was simple, as Jane explained: “She had three ambitions. Firstly, she wanted to fall in love.”

“Secondly, it was about getting a paying job.

“And the third was to leave the house.”

Ellie’s neatly tailored work uniform and grinning pictures with her boyfriend show that she succeeded with the first two.

However, like for so many people, the final challenge proved much more difficult.

Ellie has Down syndrome and type 1 diabetes and will therefore need support wherever she goes.

According to Jane, a recently retired nurse, adults with learning disabilities can apply for accommodation through their local authority, but options are limited.

Ellie had little control over where she went or who she lived with.

Charity Mencap said around three quarters of adults with a severe learning disability were still living with their family, with parents often telling staff they hoped their children would survive out of fear of where they might end up.

When the cancer diagnosis gave Jane a new “focus,” she found a group of similar families nearby – many of Ellie’s old school friends – who wanted to set up a so-called housing association.

This is a form of housing that has been around since the 19th century and more commonly involves houses being shared by groups of like-minded people – such as those hoping to live off the grid.

Each resident has an equal share of the house – and has a say in how it is maintained and who else lives there.

After almost seven years, the group believe they are just months away from legally forming a housing association – allowing them to access housing grants to build their home, without the families having to invest any money themselves.

The group, made up of eight families, wants the model to provide their children with a surrogate family – and a safe place where they can spend their remaining years long after their parents have died.

For Ellie and her friends, their hopes are more immediate.

Looking for a place close to Swansea city center, ideal for evenings out with friends.

They would like to have their own bedroom and bathroom, but share a kitchen and living room with space for the live-in carers.

“I just want to have my own space and have the time of my life,” Ellie said.

“We could have a girls’ night inside – or a girls’ night outside.

“I just want to be more independent.”

Elin, 26, from Swansea plans to live with Ellie.

Her mother Alison also accelerated the search for a long-term home for her daughter after she became seriously ill.

“One of the things Elin has often said to me is, ‘Who will take care of me when you’re gone?'” the 59-year-old explained.

“She loves Lego and she loves Disney. She is enjoying her life, but we are 30 years older than her. It’s not ideal for a 26-year-old woman to spend all her social time with her parents.”

The hope is that they will be in their new home by 2026.

The group currently meets once a month to practice cooking and talk about decorating.

Alison said the parents had considered funding the project themselves but realized they risked still being involved in their children’s lives long after they had the ability to help them.

“We want this to be a new approach that changes the system,” Alison said.

There are around 16,000 adults with a severe learning disability in Wales, but only 4,000 of them live in supported accommodation.

The remaining 12,000 – 75% of the total – are believed to still be living at home.

“What always blows you away is when families say to you, ‘I hope they die before me,'” said Mencap’s Wayne Crocker.

“This is a terrible situation for parents.”

Mr Crocker said the housing situation for people with a severe learning disability was “complex”.

But ultimately, almost 20 years after the last facility in Wales closed, there was still too little housing – and too high expectations for families.

“Many people live with their parents until, unfortunately, they die,” he said.

“For many it means the shock and sadness of losing their mother or father, and suddenly they also have to find emergency accommodation.”

The Welsh Government said it was “committed to improving accessibility in social housing” and had invested in building new homes to this end.

It added that it provided grants to local authorities and housing associations to make homes fit for purpose.