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Parents Call for More Places in Quality Long-term Residential Care

As both Westminster and Holyrood debate Bills that will determine the care of children in society, a number of parents across the UK are hoping to make their voices heard to secure greater acceptance of the fact that profoundly learning disabled children and young adults cannot always live at home. If that is the case, then there needs to be greater consideration of how their needs can be met through appropriate long-term, residential care.

The case for long-term residential care

The profoundly learning disabled have a range of complex physical and mental disabilities which leave them with no hope of living independently and in need of 24 hour a day care.

Whilst living independently within the community is the ambition of the Scottish Government for those with disabilities, for some people with profound learning disabilities even supported living in the community is not appropriate.

In England and Wales, the focus is on choice, with direct payments at the heart of putting power into the hands of parents, but that assumes the right services are in place.

However, across the UK, it is widely recognised that access to appropriate residential care for profoundly learning disabled children is an issue - especially for those leaving school and unable to pursue further education or employment. Their care needs are significant, some requiring round the clock attention.

The normal world that we live in is not a world that the profoundly learning disabled can relate to - indeed they need to be protected from it, whilst at the same time living a happy and fulfilled life. The fear of many is that the profoundly disabled will be forced to live unseen behind closed doors, with their families who struggle to cope or living alone with endless visiting carers.

There are many loving mums (and dads) who give up everything for their children, but for some, in the end, the condition their child suffers is so extreme, the whole family breaks down. That's when an element of residential care is important.

Currently, government measures the demand for long term residential care in part on applications for residential care in childhood and this is the wrong measure, as many parents believe they can cope or are wrongly stigmatised for putting their children into what may be perceived by others as 'institutions'.  Many are denied care and many don't realise they need it until it is too late.


Ann Maxwell, founder of The Muir Maxwell Trust and the mother of Muir, 16, who has Dravet Syndrome. Ann lives in Edinburgh.

"I have been concerned about the lack of residential care for a while and my comments have not always been well-received. More recently though and increasingly, families are quietly coming to me and saying we agree. Many rely on what is currently available and don't want to rock the boat, but we have to start to have a voice. Numbers may be small, but that does not mean that these children and young adults are any less important and their needs must be recognised.

"I think when our children are small and we are still living in hope that we can fix it we cling on to that hope so much that we can't contemplate the future. As time passes we realise their needs are greater than our ability to meet them and we won't cope.

"My worry is that our reticence to acknowledge this when our children are small means that it is less accessible later and the Government continues to withdraw this support. I don't want that to happen."

Dr Clara Russell has a brother aged 39 with Lennox Gastaut Syndrome, a severe form of epilepsy. He was previously in hospital-based care in Fife until this closed down and now lives on his own in the community with two carers at all times.

"As difficult as it can be for families to accept, our relatives with severe learning disabilities have wide ranging medical, social and emotional needs that can be hard to meet in the home environment. My brother has been exceptionally lucky with his move into the community due to the team of carers that work with him but from both my personal and professional experience, I feel strongly that there is a need for residential care that is not being met to enable adults with profound learning disabilities to live balanced, safe and protected lives."

Sue Goodliffe, from East Sussex, has a ten year old son with Dravet Syndrome and felt completely let down by social services. Only a threat of legal action ensured that her son's case was taken seriously, but the process took a heavy toll on Sue and the rest of the family. She fears for the future. She says:

"We always assumed that we could look after our son and it took a long time for us to acknowledge to ourselves that we would need any help. In the last 18 months, we have experienced how the system of direct payments and those administering it at Social Services can shockingly fail to respond to the basic needs of our disabled son and our family and to comply with the laws which are supposed to meet those needs. So, I am extremely anxious for the future. We take one day at a time, but I realise that we must think ahead."

Single mum, Deborah, who lives in London, has a son with severe learning disabilities caused by Dravet Syndrome, who at 16 is getting bigger and stronger daily. He is prone to violent outbursts, which if not aimed at Debbie are directed at his younger siblings, aged 12 and nine. She is at the very early stages of applying for residential schooling. She says:

"My arms and legs are covered in scratches and bruises.  My younger two are beginning to think it's normal to be treated this way.  As a parent you do all you can to protect children from violence. Yet I am expected to sit back and let this happen in our own home.

"I talked to my social worker and asked her to support my decision for residential schooling.  Her suggestion was that I should seek more help in the home with agency staff a couple of times a week. That is not going to help me on a daily basis. Even with me in tears and at breaking point she could not see that residential was the right choice for my son and for us as a family.

"They wait till you're at breaking point instead of helping at the beginning when you can make a more informed choice and not a desperate one."

Helen Farrar is facing up to a future for her daughter as she and her husband age. She says:

"Our daughter, Naomi, with Dravet Syndrome, is 10. I am nearly 50 and my husband is nearly 60. Whilst we would love for her always to live at home, there may come a day when we are unable to cope with her complex needs. I worry about what will be available to her then. The good places are few, full and too far away from us in Yorkshire."

Angela Lay supports long term care because she has seen the positive impact it has had for her 32 year old daughter, who has Dravet Syndrome. Her daughter has been living at St Elizabeth's in Hertfordshire for the past 13 years and Angela has no concerns about her future at the home, but knows the strain finding a place puts on parents.

"Had my daughter not have got a place at St Elizabeth's, I would have had to give up my job to look after her at home full time until a place became available.  It shouldn't have to be so stressful finding somewhere suitable for your child.  Parents are under enormous daily strain and making the decision to find residential care is a very difficult, it's incredibly emotional and you feel an awful guilt.  That's why it's so important to be able to find somewhere that offers good care and that you feel happy leaving your child there.

"We know that after we are gone, our daughter will continue to live at St Elizabeth's for the rest of her life. This is a huge comfort to both of us and takes a lot of the worry over her long term future away."

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