Home Rights

Two days ago, I wrote a post calling for an end to the fannying around trying to change “organisational cultures” that believe it is okay for people to be moved hundreds of miles from their homes and then be trapped for years in assessment and treatment units. I guess my call was quite blunt – let’s just start applying the law and any commissioners who can’t get their heads around the law should face the consequences.

Whilst I was pondering where to take this idea next, the news broke that Bill Mumford has resigned as lead of the Winterbourne Joint Improvement Programme after a second safeguarding alert” was issued at one of his residential schools. I have been shocked by the online reaction, which seems to have been entirely focused on “what a shame it is to lose Bill” sort of thing. I’ve hardly read anything that expresses shock that another group of vulnerable people are yet again needing a safeguarding process instigated in an institutional establishment. Even more shocking, as Sara Ryan reported today, is that the mother of one of the residents only found out this news on Facebook – nobody from MAcIntyres had thought to inform parents. This is precisely why we need a new way. A way that cuts out all the self protecting crap and puts the people using the service first.

So, how can we do this? Well – perhaps we start with the law that already exists. I’ve decided that I’m not going to get into any more debates about the function/worthiness of assessment and treatment units. Having spent four years trying to find out what their purpose is and not getting an answer, I’ve come to the conclusion that they are either hiding something very big (and corrupt?) money wise or hiding something very dark and exposure is never going to happen. Getting into a debate over justifying their existence doesn’t stop increasing numbers of people being sent to them.

Here is a call out. Is it a charter? Is it a plea? Is it a pipe dream? I suggest we start with the fundamental principle that a learning disabled person should be living in their own home, whether that be with their family, on their own with support, in a small group home. It should be their choice. Anyone (especially the State) that thinks otherwise has to prove their case before a court. Too often, the State assumes it’s rightness, turns the person’s world upside down and then it is left to the family to prove the State was wrong in removing the person from their home. And this takes time, is very costly and causes untold damage in the meantime. Let’s turn that on it’s head and make the State go through the hoops, if they want an arrangement that is different from the basic principle. So, the given here is that the person lives in their own home of their own choice. If anyone thinks the person should not be living in their own home, they have to apply to a court. Not a multi disciplinary professionals’ meeting. Not a conference between a psychiatrist and a social worker. A decision taken by a court with the person at the heart of the matter being fully represented. If assessment or treatment is needed it can take place in the person’s own home rather than setting up a fake environment that has no bearing on how they person would normally chose to live.

Have we got any law to back us up on this simple principle? Well – we’ve got loads actually. Here’s four for starters:

1) Article Eight of the ECHR:

Article 8 – Right to respect for private and family life
1. Everyone has the right to respect for his private and family life, his home and his correspondence.

2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.

2) Then we have the CRPD:

Article 19 – Living independently and being included in the community
States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) Persons with disabilities have access to a range of in-, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

3) For further leverage, we have the often quoted judgement of Munby J in Re:S

I am not saying that there is in law any presumption that mentally incapacitated adults are better off with their families: often they will be; sometimes they will not be. But respect for our human condition, regard for the realities of our society and the common sense to which Lord Oliver of Aylmerton referred in In re KD …, surely indicate that the starting point should be the normal assumption that mentally incapacitated adults will be better off if they live with a family rather than in an institution – however benign and enlightened the institution may be, and however well integrated into the community – and that mentally incapacitated adults who have been looked after within their family will be better off if they continue to be looked after within the family rather than by the State.

We have to be conscious of the limited ability of public authorities to improve on nature. We need to be careful not to embark upon ‘social engineering’. And we should not lightly interfere with family life. If the State – typically, as here, in the guise of a local authority – is to say that it is the more appropriate person to look after a mentally incapacitated adult than her own partner or family, it assumes, as it seems to me, the burden – not the legal burden but the practical and evidential burden – of establishing that this is indeed so. And common sense surely indicates that the longer a vulnerable adult’s partner, family or carer have looked after her without the State having perceived the need for its intervention, the more carefully must any proposals for intervention be scrutinised and the more cautious the court should be before accepting too readily the assertion that the State can do better than the partner, family or carer.

At the end of the day, the simple point, surely, is this: the quality of public care must be at least as good as that from which the child or vulnerable adult has been rescued. Indeed that sets the requirement too low. If the State is to justify removing children from their parents or vulnerable adults from their relatives, partners, friends or carers it can only be on the basis that the State is going to provide a better quality of care than that which they have hitherto been receiving: see Re F; F v Lambeth London Borough Council [2002] 1 FLR 217, at para [43].”

4) And finally we have the MCA and its 5 core principles:

Principle 1: A presumption of capacity

Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise. This means that you cannot assume that someone cannot make a decision for themselves just because they have a particular medical condition or disability.

Principle 2: Individuals being supported to make their own decisions

A person must be given all practicable help before anyone treats them as not being able to make their own decisions. This means you should make every effort to encourage and support people to make the decision for themselves. If lack of capacity is established, it is still important that you involve the person as far as possible in making decisions.

Principle 3: Unwise decisions

People have the right to make what others might regard as an unwise or eccentric decision. Everyone has their own values, beliefs and preferences which may not be the same as those of other people. You cannot treat them as lacking capacity for that reason.

Principle 4: Best interests

If a person has been assessed as lacking capacity then any action taken, or any decision made for, or on behalf of that person, must be made in his or her best interests.

Principle 5: Less restrictive option

Someone making a decision or acting on behalf of a person who lacks capacity must consider whether it is possible to decide or act in a way that would interfere less with the person’s rights and freedoms of action, or whether there is a need to decide or act at all. In essence, any intervention should be proportional to the particular circumstances of the case.

If all people using services and their families/carers were aware of these. then they would be able to put up a much stronger fight when LAS/CCGs start making plans to move their sons and daughters away. I am prepared to be slaughtered for the naivety or simplicty of this idea. But I believe the time is now to change the power in something as fundemental of where the person lives.

10 thoughts on “Home Rights”

  1. Thank you Mark! I am busy getting ready to do what you suggest here. Our local authority wants my son to move from the house where he has lived happily on his own with 24/7 support to somewhere where he will share sleep-in support and some day time support. We do not think this will be in his best interests.

  2. Thank you mark as always you speak with passion and common sense. Today I went on MCA training and I really enjoyed the small bit of work we did. I did bring your book about steven up to other candidates and the trainer also said he would recommend it too. He said he met you recently so I can only imagine that was when you did your talk in calderdale halifax not so long ago. I am a parent of a 7 year old who has Profound complex learning difficulties and a undiagnosed genetic condition, i am also my dads carer due to ill health and disability and recently my sister was diagnosed with mild learning disabilities and possible ADHD and Autism waiting on funding. I volunteer for my local parent forum as a rep and also sit on regional network and national network of parent carer forums. Along with been a rep for swan uk ( syndromes without a name) I only said today what you have just said lets turn the law o its head and get the authorities to jump through hoops. I love reading your blogs I have become so educated but whats so different about your writing to me is there is no sugar coating you say it as you see and believe it and thats what all parents need to see and hear. Its a tough world out there for learning disabled adults and I think more parents of children need to be aware now to help shape and change things .

  3. Seems to me we have several scenarios here:
    Where the LD person and their family are happy to all live together but the authorities don’t think its in the LD person’s best interests. OK, that can happen. Not all family set ups are great. Not all family set ups are full of people able and willing to act on the LD person’s best interests. But the burden of proof should be on the authorities.
    Where the LD person’s behavior is very hard to contain at home/in the community and there is a case for the person despite all reasonable measure etc being able to continue at home while things are the way they are. OK. Then its still for the authorities to make a case for this.And there need to be good alternatives short, medium or long term.”Because the extra help at home costs too much” is not a reasonable objection.
    Where there is a disagreement in the family about where is best for the person with LD. For example, I know of a very old lady who has a son with LD who is very disturbed in his behavior and wants to stay in his room. He is not able to take on board that things aren’t good for his mother as she becomes increasingly frail and that the situation can’t continue.She is stuck because there isn’t anywhere local going which her son would like-there’s nothing she can ask for knowing its a good place.
    All of these would be covered by the legal changes you suggest, Mark.Except as ever, good alternatives to home when this is needed.
    I used to work on a team which visited people at home who were very mentally ill, with the aim of if at all possible, helping them recover without needing to go in to hospital. We visited up to 10 times a day, we visited day and night. Some people even with the extra help needed to go in to hospital, but many didn’t.Compare this with a learning disabled person in a crisiswho may well be able to stay at home with extra help. How many visits do they get?

    1. Not all social workers are able to act in any ones best interests- covering ones backside or making rather over rehearsed assumptions about what is in an individual’s best interests does not make it so. . I see the usual demonsing of perfectly adequate families when it suits a social worker/ services to push a particular ‘solution’ to a complex issue.

      Social workers / services have never cared 24/7 for even 1 day those whose best interests they assess. The carers who live and care daily know their caree and believe it or not most want the best for the person.

      The MCA is a farce and I look forward to more social workers being at its recieving end in time- as they say what goes around comes around.

      We have a very harshly judgemental society and essentially one that ignoresethics, humanity or the importance of familiar relationships through our lives- so most end up lonely and die alone. Social work is helping perpetuate this..Being with others does not prevent being lonely, being with those who know you well does.

  4. Thank you Mark for once again sharing so much of your experience and thinking. A while ago I went to a workshop led by a barrister with huge knowledge of community care law. She had a very informative website http://www.careandhealthlaw.com. Her name is Belinda Schwehr. Would that be of interest to other family carers?

  5. Many of the next generation of families have no idea that their kids are heading to a life of medication and institutions where there is little safety and no words like Human Rights or inclusion as those were lost along the way. Those of us with a voice need to shout the truth loud and clear.

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