Notes from a visit to a Camphill Community

Why might it be of interest?

Community living is an option for supported living for some of our young people.  This is a personal account.  My daughter is severely learning disabled and I didn’t feel that this community would have been right for her – but I wanted it to be clear that this was no criticism of the community or that type of living – just not right for my daughter.

Apart from most of the people living in the community being more able than my daughter it is also over an hour’s drive away – we wanted her nearer to us and felt she’d be more comfortable in a home with young people more severely learning disabled like her.  It’s all very personal so I wanted to make sure that people wouldn’t dismiss community living based on one person’s experience!

Community settings like Camphill vary from setting to setting – so if this is of interest to you it is likely that you will have to visit a few options.  Simple differences like being an urban rather than rural setting, for example.

These are my notes from my visit to the Camphill community in St Albans.  It was a very interesting and positive visit.  The reason for writing up these notes rather than just saying that is that despite all that I wouldn’t place Sophie here.  If you hear those words – it was great but…. – you will immediately think there’s something wrong with the community – and there really isn’t – but it is all about what is right for a particular person.

A bit about the St Albans community

It is an urban site a short walk away from the centre of St Albans.  The community have a few houses in a row behind which is a hub with communal space and offices.  They have further houses and flats throughout St Albans amounting to a community of about 40 residents.  The accommodations vary from houses with up to 10 residents to smaller houses and individual flats.

Residents access activities in the community and those organised by Camphill.  They have a wonderful art studio and a café which many residents access or work at.  Camphill organise a wide range of social activities that mostly take place in the hall in the hub behind the terrace of houses owned by the community.  Residents are supported by staff in the houses and to whatever level is in their package.

Who does the community support

Observing the residents who were around during our visit – both at the hub, in the café and at the studio – I would say that most residents are quite able.  That is that while they need support most do not need 1-1 support and manage quite well with a staff member in their house and some support hours during the day.  The manager did say that they can support people with higher needs and 1-1 support but that packages would be around 20 hours a week of individual support typically.

Is there a waiting list?

St Albans currently has 2 places but it is not quite as simple as a first come first served waiting list.  The manager we met believed that they would probably fill those places from visitors to the open day.  However, they are happy to take expressions of interest and revisit the opportunities when places come up.

A place can only be offered to another person who fits in with the current household.  The assessment will only be done when a place becomes available.  Beyond that, if an individual has higher needs, needs a 1-1 or has accessibility needs all of that has to be taken into account and how those needs might affect the dynamic of the household.  For example, if a new person needs 1-1 they have to consider whether this will have a negative impact on the current household – if the place is in a house with independent people will they feel that their independence has been eroded by having an extra staff member ever present?

Assessment:  you might wonder why an assessment isn’t carried out when you put your name down for a place.  When you apply you will provide some information about your young person and their needs.  But as it could be some time – maybe a couple of years even – before a place come up needs may have changed or you may have changed your mind totally!  Assessments are costly for places like Camphill – and residential colleges – both in terms of money and staff time.  So to do an assessment at the time of putting a name down would actually mean staff spend time doing assessments that will come to nothing in the end.

Additionally, it is important to establish whether your local authority will even consider funding the placement.  It’s not that Camphill is expensive – although that might be an impression your LA has – but not all LAs will fund out of their own area.  They should but you don’t want to find out at the last minute that they will be difficult about it.

A bit about Sophie

Soph is 24 and she has Down syndrome, ASD, non-verbal and classed as SLD – all quite accurate.  She went to a local special school which she loved (so did we!) and then to a residential college and she now lives with 2 other young people in a supported living home locally.  We saw college as the bridge between living at home and supported living.  At home Soph was, and still is, less able than when she is away from home – she is quite able in her own home.  For example, with just a little prompt she can take a shower and get dressed.  She doesn’t do any of that independently when she’s in our home but she learned at college.  She was always active and engaged during the school day so we saw residential college as a way build on that daytime activity and engagement in her home hours.  And it worked.  At college she went to ‘school’ and then remained more active and engaged when she was in her flat in the evening and at weekends.

While she needs 24/7 support in her home she can do a lot for herself and the staff encourage and support her in this.  But she can’t go out independently, take a bus or do her shopping without support.  She can’t cook for herself and wouldn’t know when to wash and dress without a prompt.  She can ‘help’ with a lot of things once shown what to do but without support she’d have no idea what to do or when.

You may know that I parent commissioned Soph’s supported living arrangement.  What that means is that me and the other 2 parents commissioned the care agency and housing provider.  The LA is paying – Soph’s social care package covers her care needs and housing benefit pay the rent and some additional charges.  We did this so that we could chose our care provider and housing provider and the LA can’t change either.  But additionally all our young people have quite specific needs that mean that they need a certain home environment – something that is not so easily achieved if a young person joins an existing home.

Soph is a happy and content young woman and her home and her weekly routine suits her.  She needs a high level of consistency with her staff and how she fills her days.  She can be quite easily disturbed but not easily put back on track.  This is quite hard to explain but I’ll try!  One year in school she was in a class with a young man who made sudden and loud noises.  The first time this happened Sophie took herself out of the classroom and refused to return – for the entire school year!  The school moved the young man to another class but still Soph would not go back into her class.  She was fine the next school year in a new class with a new teacher but nothing the school did in that year would move Sophie.

We can’t risk something like this happening her home so we have to be sure about who she lives with and what her home is like.

Sophie likes being around people but she doesn’t like too much variation.  She becomes very fond of the people she lives with and the people who take care of her.  She seems to be most comfortable around people who are like her – basically more disabled.  We noticed this many years ago when she was still in a mainstream primary school – she wasn’t unhappy at all but we noticed that she was happier when going to her after school and weekend clubs – with disabled young people.

So why not Camphill for Sophie?

A young person would be joining an existing home and while Camphill does have some smaller accommodations most are larger homes.  We wouldn’t want Soph living on her own – we always thought a household of 3-4 would work best for her – but the chances of there being someone who had a behaviour that could upset Sophie in a larger household is just too big a risk.  Equally the bigger the household the bigger the chance that one of Soph’s behaviours would upset another resident.

While households are quite stable – the fact that there’s not a lot of places coming up at any time suggests a degree of stability – they do change and we don’t have any say in those changes.  We felt that Sophie might find a larger household a bit overwhelming and that would likely lead to her spending much of her time in her room on her own which is something we wanted to avoid (she does that when she’s in our home – little interaction with anyone else in the house).

Camphill is geared up to supporting more able people and I have to admit to some concern about their experience supporting higher needs people.  We witnessed interactions between staff and residents and it was just what you would want but it raised the question in my mind about how well someone with higher needs would be supported and integrated into the community.  I’m not questioning their ability to have staff who can support someone with higher needs but I wondered whether the staff and the person with higher needs could be a little isolated as their daily routines and needs could look very different from that of the average resident.

I felt that Sophie could be a bit of an outsider in this community and I worry that her staff would be a bit on the outside as well.

It’s all personal

I don’t doubt that Camphill would do all it could to support and include a young person like Sophie.  I equally don’t doubt that Sophie could be quite happy in a Camphill Community.  But what it comes down to is that I think she can be happier in a different living setting.

Another young person classed as SLD could have quite different needs for their home and life than Sophie has and could be happy here.  It’s not really about the degree of disability but how a person wants to live their life.

In theory I love the idea of Camphill communities.  And it may well be that a different community would have met Soph’s needs.  However, none are as nearby as we want to have Soph living which would have counted them out anyway.  Having said that St Albans is about an hour’s drive from Richmond and Delrow (near Watford) a little less.