Sunday, 25 November 2012

Supported Living: Cutting through the Confusion

A supported living option we viewed

We decided some time ago that it would suit Chrissy best to live on her own in the community, with round-the-clock support to help her achieve as much independence as possible - but the choices are mind-boggling and rules about eligibility criteria keep changing. We are just starting down this road and embarking on another steep learning curve!

Here's some information I've gleaned so far, which I've simplified for my own benefit. I hope it helps any of you going down the same road....

Renting privately doesn't work for many people with learning disabilities as standard tenancy agreements only cover a 6 or 12 month period and the landlord can evict the tenant at short notice. It's also unaffordable as most rents now exceed 'local housing allowance' - a term used to describe the maximum amount of housing benefit payable. Another complicating factor is that many people with learning disabilities may need a two-bed house for a carer to stay overnight, or mobility aid adaptations that a landlord wouldn't be prepared to make.

Private sector lease management bypasses some of the obstacles to renting privately. Here, the landlord lets his property to a third party 'Not for Profit' or Registered housing provider that only sublets to disabled tenants. Golden Lane offer a service like this and are affiliated to MENCAP, who would provide the care. Under a private sector leasing arrangement like this, Chrissy's housing benefit claim could then be assessed as exempt accommodation or an excluded tenancy - which means her claim would be excluded from the ordinary rules that cap housing benefit.

In most cases, the only way Chrissy could apply for exemption is if the landlord, or someone acting on his behalf, was prepared to offer a certain amount of care, support or supervision. If she wanted to rent from a private landlord, and care and supervision was independently and wholly commissioned by Social Services, Chrissy could not claim exemption. However if she rented from a registered social landlord, who would contribute to her care and support (I was advised that the amount of support varies but ordinarily around two hours a week) this would fit the bill for exempt accommodation and allow more flexibility on the amount of housing benefit paid.

The care, support and supervision rule deters most private landlords but you would think that it could work for parents if they could afford to buy their child a property to rent from them. Unfortunately, laws governing families renting to disabled relatives are complex and restrictive. A way around the care, support and supervision rule is for Chrissy to rent from a registered housing association. Because the housing association is already regulated by central government and receiving government subsidies it isn't obliged to provide the care and support and it could come from another source. If the housing association don't have anything available they can do a lease deal or buy something outright for Chrissy on the understanding that she would rent it from them.

Our final option, and the one that interests us most, is shared ownership. Chrissy will be on the high rate of DLA for mobility & care again when she leaves hospital, which means she should be eligible to get a small mortgage to be paid for from her benefits. The top-up amount needed to buy something suitable would be paid for by a registered housing association that runs such schemes. They would do all the repairs and maintenance, and it offers Chrissy the most security as she would be a leaseholder. The main drawback for us is that this route is more lengthy and complicated than most, and Chrissy is due to leave the assessment and treatment unit in the next two months.

If we do opt for shared ownership we may have to look at what could be done to support Chrissy here at home with us during the interim period between her discharge and finding a suitable place to live.

Some time in the future we may move to a different area & buy two houses close together with Chrissy in mind. Where we live now is in the middle of nowhere and I've abandoned the idea of her living in the same village. In order to make the most of her independence she will need to be near a town with access to a wide range of amenities and good local transport routes to offer a better choice of staff.

So far we have been offered one option - our local PCT have a vacant bungalow adjacent to two other homes that are singly occupied by women with learning disabilities. They would all be cared for by the same team. The downside of a commissioner providing both housing and care is that the roles would be harder to split if there was a problem say, the care provision failed but the accommodation was fine. This option looks good on the surface, and the bungalow is in a nice area, but I'm uneasy about putting Chrissy completely in the PCT's hands because they've let her down repeatedly in the past. It's also further away from her family home than is preferable.

Another maze to navigate and a big responsibility resting on our shoulders. We need to get it right this time to give Chrissy the life she deserves.

I am a SWAN UK (Syndromes without a Name) blogger

Monday, 19 November 2012

Visiting the Minister for Care in Westminster

Last week, MENCAP and the Challenging Behaviour Foundation invited me and other relatives whose children & siblings have been failed by support services to Westminster to tell Norman Lamb, Minister for Care Services, our stories. It was a great honour to be asked, and it felt good to be heard by someone with the power to change things. I felt a great sense of solidarity with the other relatives and their harrowing testimonies hardened my resolve to ensure the failings that had left Chrissy in so much torment are thoroughly investigated.

It's a relief to know that I’m not alone in feeling angry at the struggles we've faced to get Chrissy happy and settled again. I’m one of the lucky ones - Chrissy hasn't been abused by her carers and I’ve finally got my lovely daughter back. Other relatives told similar encouraging stories that show what can be achieved with the right support. Our battles have been hard-won. Learning disability services had given up on our loved ones and left us not knowing where to turn. As we spoke among ourselves, I learned that I wasn't alone in feeling guilty, as if I had been the one to let my child down.

Norman Lamb stayed beyond the time that had been agreed and said that hearing our stories was as shocking as watching the original Panorama programme about Winterbourne View. We must continue to speak out for the sake of those that have no one to speak out for them. I hope the meeting with Norman Lamb will make a difference, he'll do all he can to ensure lessons are learned, and that adults with learning disabilities are treated with as much dignity and respect as the rest of us.

I am a SWAN UK (Syndromes without a Name) blogger