This article is from the source 'guardian' and was first published or seen on . It last changed over 40 days ago and won't be checked again for changes.
You can find the current article at its original source at https://www.theguardian.com/commentisfree/2016/sep/01/sam-cant-speak-disabled-housing-ruining-health
The article has changed 5 times. There is an RSS feed of changes available.
| Version 1 | Version 2 |
|---|---|
| Sam can’t speak – or challenge the housing that is ruining her health Sam can’t speak – or challenge the housing that is ruining her health | |
| (4 months later) | |
| To have no voice is the new norm for disabled people, a by-product of a political climate in which politicians vote in Westminster, then care packages around the country are cut. For Sam St Pierre, who has severe cerebral palsy as well as learning difficulties, the problem is literal. “She’s sharp as a razor,” her mum Alison says, but because she communicates with a mixture of signing and speech, she struggles to tell strangers what’s happening to her. With Sam’s permission, I talk to her mum on her behalf. Her daughter, Alison says, is now desperate. | To have no voice is the new norm for disabled people, a by-product of a political climate in which politicians vote in Westminster, then care packages around the country are cut. For Sam St Pierre, who has severe cerebral palsy as well as learning difficulties, the problem is literal. “She’s sharp as a razor,” her mum Alison says, but because she communicates with a mixture of signing and speech, she struggles to tell strangers what’s happening to her. With Sam’s permission, I talk to her mum on her behalf. Her daughter, Alison says, is now desperate. |
| In a small bungalow punctured with the sound of constant shrieks, 36-year-old Sam has – in her mum’s words – been “left to rot”. | In a small bungalow punctured with the sound of constant shrieks, 36-year-old Sam has – in her mum’s words – been “left to rot”. |
| For over a decade, Sam had been happy living in a busy residential home in Preston, Lancashire: she had friends, went horse riding twice a week and was learning to swim. But in 2014, following an incident in which she complained of an assault by a staff member, Sam had to move. | For over a decade, Sam had been happy living in a busy residential home in Preston, Lancashire: she had friends, went horse riding twice a week and was learning to swim. But in 2014, following an incident in which she complained of an assault by a staff member, Sam had to move. |
| At this point, things only got worse. In a village 30 miles away, Lancashire county council offered up their solution: a supported tenancy for the elderly with severe disabilities. Or as Alison, 56, calls it: “like a holding place or a morgue.” | At this point, things only got worse. In a village 30 miles away, Lancashire county council offered up their solution: a supported tenancy for the elderly with severe disabilities. Or as Alison, 56, calls it: “like a holding place or a morgue.” |
| The bungalow sits set back from the other houses on the street – “Children don’t even knock on the door at Halloween”, Alison says – and Sam can’t get outside because the layout of the garden blocks her wheelchair and walking frame. | The bungalow sits set back from the other houses on the street – “Children don’t even knock on the door at Halloween”, Alison says – and Sam can’t get outside because the layout of the garden blocks her wheelchair and walking frame. |
| Now, at only 36, for the last two years Sam has spent her days stuck inside with two elderly women: one 79-year-old, too frail to move, and a 61-year-old with autism and Alzheimer’s. Neither is able to communicate or respond to Sam. | Now, at only 36, for the last two years Sam has spent her days stuck inside with two elderly women: one 79-year-old, too frail to move, and a 61-year-old with autism and Alzheimer’s. Neither is able to communicate or respond to Sam. |
| The place is run on “skeleton staff” – two carers for three people – and often, that’s down to one. In a typical weekend, Sam is left to sit by herself in her bedroom. “It was sold to me as a package of independence,” Alison says. “They take her to Asda. That’s about it.” | The place is run on “skeleton staff” – two carers for three people – and often, that’s down to one. In a typical weekend, Sam is left to sit by herself in her bedroom. “It was sold to me as a package of independence,” Alison says. “They take her to Asda. That’s about it.” |
| Alison is disabled herself – two major surgeries on her legs and hips after a car crash – but removes Sam for hours whenever she can. She’s exhausted, emotionally as much as physically. | Alison is disabled herself – two major surgeries on her legs and hips after a car crash – but removes Sam for hours whenever she can. She’s exhausted, emotionally as much as physically. |
| What’s worse for the family is that 20 miles away in Hebden Bridge – five minutes from Sam’s mum, sister and newborn niece – is a safe, busy residential house with an opening. “You walk in the place and there’s music, it’s bustling,” Alison says. “All her own age.” | What’s worse for the family is that 20 miles away in Hebden Bridge – five minutes from Sam’s mum, sister and newborn niece – is a safe, busy residential house with an opening. “You walk in the place and there’s music, it’s bustling,” Alison says. “All her own age.” |
| Left where she is, Alison says her daughter is fading away in front of her eyes | Left where she is, Alison says her daughter is fading away in front of her eyes |
| A empty bedroom has been waiting for Sam there for 12 months. The problem is that the council won’t pay for it. “It’s the cuts, the cuts, isn’t it?” Alison says. | A empty bedroom has been waiting for Sam there for 12 months. The problem is that the council won’t pay for it. “It’s the cuts, the cuts, isn’t it?” Alison says. |
| The fees for Sam’s current home are £850 a week. The new house will accept £1,250 (Alison says they’ve already dropped their fees twice). That’s less than the council was spending on the home Sam was living in before she was assaulted but in the current climate, that’s an ignored detail. | The fees for Sam’s current home are £850 a week. The new house will accept £1,250 (Alison says they’ve already dropped their fees twice). That’s less than the council was spending on the home Sam was living in before she was assaulted but in the current climate, that’s an ignored detail. |
| A spokesperson for Lancashire county council told me they’ve given “careful consideration” to Sam’s needs and believe that “her current placement is suitable”. They add that “it has been suggested to us that Ms St Pierre is moved [from local authority supported living accommodation] to private residential care outside of the county at significant additional cost. However, we have to make decisions about placements based on an approach that is fair and equitable to all of the people we support.” | A spokesperson for Lancashire county council told me they’ve given “careful consideration” to Sam’s needs and believe that “her current placement is suitable”. They add that “it has been suggested to us that Ms St Pierre is moved [from local authority supported living accommodation] to private residential care outside of the county at significant additional cost. However, we have to make decisions about placements based on an approach that is fair and equitable to all of the people we support.” |
| Left where she is, Alison says her daughter is fading away in front of her eyes. “She used to laugh and joke. All that’s gone now.” Sam has developed stress-related seizures (“She turns blue. She just keeps going in and out.”), which were virtually unknown before she was moved there. She’s been hospitalised for them – she fell out of bed once – and the doctors have tripled her medication. | Left where she is, Alison says her daughter is fading away in front of her eyes. “She used to laugh and joke. All that’s gone now.” Sam has developed stress-related seizures (“She turns blue. She just keeps going in and out.”), which were virtually unknown before she was moved there. She’s been hospitalised for them – she fell out of bed once – and the doctors have tripled her medication. |
| “Sam’s desperately unhappy and the social care team agrees that her health has deteriorated significantly,” Alison stresses. “I don’t know how the council could leave her there.” | “Sam’s desperately unhappy and the social care team agrees that her health has deteriorated significantly,” Alison stresses. “I don’t know how the council could leave her there.” |
| A fortnight after we talk, Alison emails me, distraught. It’s Sam’s birthday and she’s found out the bedroom in Hebden Bridge – Sam’s hope – has been taken. | A fortnight after we talk, Alison emails me, distraught. It’s Sam’s birthday and she’s found out the bedroom in Hebden Bridge – Sam’s hope – has been taken. |
| Alison’s been to visit the replacement home the council allocated via email: another home housing residents up to 80 years old, that is 40 miles away from Sam’s family. Staff were friendly but tired, Alison says. “One told me it’s a private house and they’re worked day after day without a break”. The sofas were stained with bodily fluid, she says. There were holes in the plaster on the walls and dirty floors. The lounge stank of urine. | Alison’s been to visit the replacement home the council allocated via email: another home housing residents up to 80 years old, that is 40 miles away from Sam’s family. Staff were friendly but tired, Alison says. “One told me it’s a private house and they’re worked day after day without a break”. The sofas were stained with bodily fluid, she says. There were holes in the plaster on the walls and dirty floors. The lounge stank of urine. |
| Alison thinks about hiring a lawyer but she has no way of affording it. Besides, she says, legal help would take time and “I’m not sure Sam will last.” She contacts the council daily – report after report, email after email, letter after letter – but says they refuse to meet with her. | Alison thinks about hiring a lawyer but she has no way of affording it. Besides, she says, legal help would take time and “I’m not sure Sam will last.” She contacts the council daily – report after report, email after email, letter after letter – but says they refuse to meet with her. |
| “Sam, she’s being so brave,” Alison says, pausing. “She can’t write an email or speak to an MP. If you haven’t got a voice – if you literally haven’t even got the speech – who’s going to fight?” | “Sam, she’s being so brave,” Alison says, pausing. “She can’t write an email or speak to an MP. If you haven’t got a voice – if you literally haven’t even got the speech – who’s going to fight?” |