‘The endless search for suitable housing for my daughter with learning disabilities’

While ministers want people with learning disabilities to move out of hospital into the community, Jane Gregory has found many barriers to achieving this for her daughter Chrissy.

Jane Gregory and her daughter Chrissy

Since the Winterbourne View scandal, the government has set up a “joint improvement programme” to help move adults like my daughter Chrissy out of assessment and treatment units and back into the community.

Chrissy, who is 29, has moderate-severe learning disabilities and complex needs caused by a rare chromosome disorder.  She had spent her adult life in residential care but in January 2010, she was admitted into an inpatient unit due to an escalation in her challenging behaviours, which can be extreme and unpredictable. Now she’s ready for discharge, it’s been agreed that she needs a ‘bespoke’ supported living package in the community…but whose community?

Our experiences demonstrate that the infrastructure isn’t there to enable people like Chrissy, who have very complex needs, to move into successful community placements. There are too many barriers in place; the main one is cost.

Chrissy is caught in the crossfire of a five-year funding dispute over her eligibility for continuing healthcare. The clinical commissioning group, which is currently funding her care while she’s an inpatient ‘without prejudice’, suggest that she needs to move into an unfamiliar urban community, because housing is cheaper than in the small rural community where her family live. It reasons that, if the CCG turns out not to be the responsible commissioner, it is potentially open to a challenge that it has fettered the relevant responsible commissioner’s discretion by agreeing to a placement that is outside that body’s policies and/or resources.

The CCG has raised cost as a potential barrier with every housing option we’ve suggested. However, we argue that there should be more compelling reasons for sending someone like Chrissy out of area as, to give a supported living set-up our best shot, she will need to be close to family support. Her loving family relationships and community links formed by weekly overnight stays with her parents could be built on to improve her quality of life and we would also be on hand to provide back-up in emergencies.

We looked at buying Chrissy a house ourselves and renting it to her but there are new, confusing rule changes that preclude renting to relatives. The various housing options are incredibly complicated and family carers have to become experts as we’re left to do most of the research. We looked into shared ownership schemes but there aren’t any in our area.

Housing benefit doesn’t cover the cost of rents in our locality and the caps have made renting through Registered Social Landlords unaffordable. Chrissy’s claim should be ‘exempt’ or excluded from the ordinary rules that cap housing benefit but this is discretionary and it isn’t made clear whether someone is eligible for an exemption until they apply for the benefit – which is only possible once they’ve secured a property. Normally responsible commissioners would underwrite the risks because, as Mencap explained to me, they are responsible for the whole care package, but the CCG won’t agree to this.

We fear that, given Chrissy’s challenging behaviours, pre-school level of functioning and autism, she would struggle to form community relationships in an unfamiliar area, even with the best of carers. Her moods and health are balanced on a knife-edge and the crowds, noise and large supermarkets with fluorescent lighting that you find in urban communities can flood Chrissy’s senses and cause her distress. This is expressed in severe challenging behaviours – she may disrobe, thrash about violently on the ground and scream for up to an hour.

So the only option left is social housing. We registered Chrissy two years ago but she wasn’t considered to have a priority housing need, unlike most people who are leaving hospital and need housing. A housing officer said Chrissy was “hardly going to end up on the streets”.

Then three weeks ago there was a breakthrough when Chrissy’s case was highlighted to someone at a high level in the housing department. Now Chrissy is in a top priority banding but there is very little available to meet her complex needs. Anything that puts the supported living set-up in jeopardy could put further strain on the public purse but many two-bed properties she’s eligible for are flats in confined and overlooked areas without gardens, where her behaviours would be seen as a nuisance and could cause her to be shunned or, at worst, evicted.

I check the social housing list every week but rarely see anything local so, a fortnight ago, I was thrilled when a bungalow came up in a neighbouring village that Chrissy looked all set to get. An urgent multi-disciplinary meeting was called to make detailed plans but, sadly, a week later, we learned that the house had gone to another applicant, whose stronger local connection trumped Chrissy’s priority banding.

So it’s back to the drawing board…..

Read more about the family’s experiences on Jane Gregory’s Sharing Stories blog.

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