Wednesday, 15 June 2016

Emily Needs a home

In fifteen days time, Emily our youngest daughter will be homeless.

It’s one of the most frightening concepts a parent can contemplate, but when your child has learning disability, autism epilepsy and operates to the cognitive ability of a five year old the concept becomes an all-encompassing terror.

We have to find a house and since the decision was made to remove Emily’s school placement in January, we’ve lived it everyday.

We haven’t been idle. I’ve applied for ESA and PIP sorted her bank account, and attended countless meetings. I’ve written articles, made films and tweeted as always, in support of disability rights and the issues that disabled people face everyday in terms of political and social disenfranchisement.

The CCG who are funding her care package haven’t been idle either. They’ve sourced a private provider, led meetings, organised professional involvement and supported us through this.

The care provider hasn’t been idle. They recruited staff identified Emily’s needs, met her and trained the new staff in de-escalation techniques.

The housing officer hasn’t been idle. She’s helped me complete the form for the website which offers social housing, sourced properties, liaised with Housing associations and kept me updated on the progress of any bids we’ve made and we’ve travelled all over the county looking at properties, none of which are suitable.

Throughout this whole process. the perfect property, the one that meets all of Emily’s needs in terms of bedrooms, perimeter and location has been lying idle for over a year.

On Monday with only 19 days before Emily is homeless we were told about it.

We contacted the housing association; they told us it was unavailable.

We contacted the housing officer; she told us it was unavailable.

It transpires that the house was selected a year ago and has been vacant ever since. Shropshire Council’s Adult Social Care Services have entered into a “contractual arrangement” with the housing association and the lease is due to be signed over. It isn’t signed yet.

Professionals, working with Emily, have told us that if no suitable property can be found for Emily, she will have to go to an Assessment and Treatment unit, in Birmingham.

The property we have found, the perfect one, the only one, is being renovated for multiple occupancy for adults with learning difficulties who are returning to the community.

We’ve been offered another house 45 minutes away. This is problematic for many reasons.

The care-staff were recruited in Emily's home town because the care provider was told as we all were, that finding a property for Emily here "wouldn’t be a problem".

For the staff to travel an extra 45 mins to and from work, will place an additional burden on them and impact them financially. There is a very real possibility that this care package could break down if additional pressures like this are placed on the care staff.

The transition will be very difficult for Emily. I’ve stressed from the beginning that this transition must be a long one with carefully managed introductory visits by Emily to the property and to the people she will have looking after her. 

We will need to be very close by, because the likelihood of Emily going into crisis and meltdown post transition is very high. This is another reason why the back up of additional care staff close to Emily's property is so important. 

Despite all our best efforts the property is still not found and now we have only 15 days to find one and introduce Emily to it. 

Travelling a distance to Emily in crisis is an added pressure.

The property in town, which has been earmarked for other occupants, is 10 minutes away. It’s empty it’s ready to move her into, it would solve her homeless crisis, it would be close to her family.

It would diminish the triple anxiety of new property, new staff and new location by one third, as it’s a familiar area she’s known from respite.

None of this appears to have made any impact on Adult Social Care. They have refused to speak to me directly, choosing instead to use the housing officer as a human shield and getting her to talk to us and others.

In the Care Act 2014 it states the general duties of a local authority:

(1)  The general duty of a local authority in exercising a function under this Part in the case of an individual, is t promote that individual’s well being.
(2)  “Well-being” in relation to an individual, means that individual’s well being so far as relating to any of the following
(a)  personal dignity (including treatment of that individual with respect
(b)  physical and mental health and emotional well-being
(c)   protection from abuse and neglect
(d)  control by the individual over day-to-day life (including over care and support, or support provided to the individual and the way in which it is provided)
(e)   participation in work education, training or recreation
(f)   social and economic well-being
(g)  domestic family and personal relationships
(h)  suitability of living accommodation
(i)    the individuals contribution to society

Of particular interest to me was this statement from Part 2 “Preventing needs for care and support”

(2)In performing that duty a local authority must have regard to –
(a) The importance of identifying services, facilities and resources already available in the authority’s area and the extent to which the authority could involve or make use of them in performing that duty.

I would say that an empty bungalow, being made ready for adults with learning difficulties but not already occupied by adults with learning difficulties, owned by a housing association ten minutes away from Emily’s family with a second bedroom for her 24 hour carer, ALREADY AVAILABLE IN THE AUTHORITY'S AREA, is exactly what the Care Act 2014 was written to legally enforce.

I would say that Emily’s emotional physical and mental well-being would benefit from the bungalow and NOT from being placed in an assessment and treatment unit.

I would suggest that the properties unsuitable for Emily, might be eminently suitable for adults with learning difficulties; perhaps able to use the Yale locks placed on the bedroom doors of multi occupancy units, to promote independence.

My heart aches for anyone in an assessment and Treatment unit. My heart is breaking at the idea that there is a property perfect for Emily but as we’re denied this she will potentially be sent to an assessment and treatment unit. How is this practical, sensible or morally defensible?

Emily is already deemed homeless and has been since the 2nd of June. Why are her needs of lesser importance?

Adult Social Care can ignore me, they can disrespect me, they can pay no attention to my mental health, my emotional well-being or my human rights.  

They can repeat the phrase “unavailable” ad nauseum to the people dispatched to instruct me of this message; but they can’t ignore the law and they can’t do any of the above to a 19 year old learning disabled, autistic woman with epilepsy, unchallenged.

Perhaps they won’t read this. Perhaps they will and simply ignore it.  I have 15 days to find Emily a house and I’m going to fight for her. I promised her I would when she was diagnosed at three, it’s promise for life.

If those in power in Shropshire wonder why I make such an unseemly, fuss about things, they should ask themselves, what would they do if this was their child, disabled or not.

My message to Shropshire Council here


  1. What can I say? Tears in my eyes as I read this post. Just can't understand why you, Emily and family are having to go through this.

    You already know you have an awful lot of people on your side. I don't know where you all find the strength, but it looks like you're going to have to dig deep and keep fighting.

    Always with you in this...

  2. My heart goes out to you all. It is easy to write words of sympathy but it is action that is required, my empathy is genuine but of no practical help.I wouldn't know where to start in approaching the press. I don't think some papers report accurately however I am sure The Guardian, Independent, Radio 4 could help to facilitate Emily's move? I hope with all my heart that Emily's new home is the bungalow close to the family home. Not a unit, completely innapropiate for her needs. I am sure you are exhausted, emotionally drained, you deserve better, Emily deserves her home. I hope with all my heart that she gets this achievable dream.