from our winter 2014/15 issue

8/9/2019 From our winter 2014/15 issue

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A new UK campaign, the LB Bill, is aiming to put a stop tothe way that people with autism can be forced into careor assessment units that may be hundreds of miles awayfrom their home and family. Report by Fiona McNeil

Sent away

The autism community isbesieged with real-life horrorstories where loved ones havebeen forced into care many milesaway from their families. The resultis that distraught family memberscan feel powerless in trying to getthem back home.

The situation is far from new, butin recent years the media spotlighthas focused more public attentionon the practice. There was thecase, for instance, of Mark Neary,who rescued his son Steven frombeing sent to a care placement inWales, hundreds of miles from hishome in west London.

Then there was Joshua Wills,who was sent away to Birmingham,260 miles from his home inCornwall. More recently there wasthe case of Claire Dyer. After manymonths of campaigning, her familyeventually succeeded in having herreturned to Swansea from a unit200 miles away in Brighton.

Often, families report that a

decision taken to remove theirloved one was concealed fromthem. Claire Dyer, according toher family, was bundled off intocare and her family only told aboutthe move after it had happened.

Most vulnerableThe process tends to take placewhen parents are at their mostvulnerable, such as when theyhave asked for some respite help.This is what happened to MarkNeary. When single dad Markcaught the flu, it seemedreasonable to ask for his autisticson, Steven, to go to respite carefor three days. This, he reasoned,would allow him to recuperate.

Steven, who was 19 at the time,had been to the centre many times

before, but he was upset by thechange in routine and the fact thathis dad was unwell, so he becamehighly anxious.

Social Services rang me at 7.30the next morning to say Steven hadhad a bad night, says Neary, acounsellor who lives near Uxbridge.They suggested sending him to apositive behaviour unit for acouple of weeks. They said, its

just to get you back on your feet,so I agreed. It was the worstdecision I ever made.

Steven was disturbed evenmore by the move and hisbehaviour deteriorated further. Hehad meltdowns, lashed out andbroke things. Instead ofacknowledging that the boy hadautism and was uncomfortable withchange, staff at the unit compiled adossier of incidents and decidedthat he was too challenging to liveat home.

When I asked for him to comehome, they said I had to put agood case as to why that shouldhappen, Neary explains. I toldthem he was nothing like that athome and that the unit wasnt theright environment for him, but theywouldnt listen. They wereabsolutely convinced that theywere right. I was desperate.

Escaped from the unit One night, Steven escaped fromthe unit. Although he was foundsafe, the media got hold of thestory. This led to Nearys localauthority providing him with anadvocate, which, he laterdiscovered, he had been entitledto all along.

When the case eventually wentto court, it was revealed that socialservices had planned to sendSteven to a unit in Wales withouttelling his father. They had alsowithheld a psychologists reportfrom him because it criticised theunit for disregarding Stevensautism. Finally, and in the glare ofhuge media interest, the judgeruled that home was the bestenvironment for Steven as hisdad had been saying all along.

These Assessment andTreatment centres dont do whatthey say on the tin, Neary says.How do you treat autism,anyway? Local authorities put

Insight

Bereft: lovedones can beforced intocare far awayfrom home but somefamilies havesuccessfullyfought tobring themback again

I told them hewas nothing

like that at home andthat the unit wasntthe right environment

for him, but theywouldnt listen I was desperate

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people there because they dontknow what else to do with them.

Dr Simon Duffy, director of theCentre for Welfare Reform, whocampaigns, among other things, forbetter support for disabled childrenand their families, says that some3,500 people in the UK arecurrently being looked after in suchunits, often against their families

when someone switches from beingsupported by their local authorityschildrens services to cash-strappedadult provision. Requests for help inthe latter service can be met with anunsympathetic we know best kindof attitude.

Until someone is 18, familiesare believed to act in a childs bestinterests, Duffy explains. After that,theres very little recognition of thatfact and people have to struggle toget their voices heard. Its ahangover from the Victorian welfaresystem, where families wereblamed for someones disability.

And, he points out, in a societywhere we have all become used tooffloading the care of vulnerablepeople to institutions, placing adisabled person in a special unit is,unsurprisingly, the first choice for

social workers. These institutionsare often degrading and notadapted to the autistic personsneeds, Duffy says. The situationbreaks down and they are referredto another unit, further away, whichis more punitive and prison-like.

People complain, butinstitutions dont like beingchallenged by families so the movecan be seen as a good way tolessen their influence.

Although he fully supportschanges to the law, Duffy believesstrongly that we also need acultural shift where families arelistened to and it is considered thenorm for disabled people to live aspart of the community.

We live with a crazy systemwhere a care home gets anaverage of 150,000 per year forlooking after someone, he says.If even a f raction of that was givento someones family to help carefor them, it could make a huge

We need acultural shift

where families arelistened to and it isconsidered the norm

for disabled people tolive as part of thecommunity

Alex Rook, a partner with law firm Irwin Mitchell (along with Mencap, Ambitious About Autismand the Challenging Behaviour Foundation) has produced a leaflet giving advice to families onmaking sure they are listened to when social workers or health professionals make decisionsabout their adult children.

Some of the main points are: If an adult lacks the ability to make decisions for themselves, decisions must be made for

them in their best interests, according to the Mental Capacity Act 2005. These decisionsmight be about where someone lives, what care they need and contact with other people.

The act states that all professionals must consult with the persons family (or anyone who isconcerned with their welfare) when making decisions. Families or friends must be consultedabout all decisions, not just the important ones.

If families or friends are not satisfied with decisions made about the disabled person, theissue may be resolved by the Court of Protection.

The full advice leaflet and template letters that families may use can be downloaded from:www.irwinmitchell.com/activities/best-interest-decisions-tool

Your rights

wishes. These situations oftencome about, he says, when aperson who has autism or alearning disability reaches lateadolescence. At this time hormonalsurges, life changes and a personsinability at self-expression canmean that their behaviour becomesmore challenging.

Crucially, this is also the time

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Insight

Reunited:Phil Wills withhis son Joshua,who was sentto Birmingham,260 milesaway fromhome inCornwall

P H O T O G R A P H C O U R T E S Y O F P H I L W I L L S
http://www.irwinmitchell.com/activities/best-interest-decisions-toolhttp://www.irwinmitchell.com/activities/best-interest-decisions-tool


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difference. It is vital, Duffy says,for families to realise that they dohave rights regarding the care oftheir adult child and to find outwhat these are as soon as possible(see Your rights, previous page).

Its also essential, he maintains,to join forces with others in similarsituations through communitygroups and online forums.

Bite the bullet and take

control, he advises. The personand the family must become morepowerful than the system.

Barrister Steve Broachspecialises in the rights ofdisabled children and adults andis part of a campaign to changethe law to make it more difficult forlocal authorities to send peopleaway from home.

Right to be involvedThe campaign is known as the LBBill in memory of autistic teenagerConnor Sparrowhawk (LB is shortfor Laughing Boy, his nickname).Connor died in tragiccircumstances at an assessmentand treatment centre last year.

Families always have the rightto be involved in their childs care,

Broach says, but they dontusually have the final say. Whensomething goes wrong, getting themedia involved and making lots ofnoise is useful, but really the firstthing you need is a good lawyer.

And dont forget that Legal Aidstill exists, even if its not alwayseasy to come by.

Together again:Steven Neary(left) and hisfather Mark

Bringing Us Together is an online community group for disabled children,young people and their families: www.bringingustogether.org.uk

See Steve Broach on Twitter or read his blog at:https://rightsinreality.wordpress.com

To find out more about the LB Bill or to get involved, go to:https://lbbill.wordpress.com or e-mail: [email protected]

The LB Bill Facebook group is at: www.facebook.com/hashtag/lbbill Contact Dr Simon Duffy at: www.centreforwelfarereform.org Irwin Mitchell solicitors: www.irwinmitchell.com

Contacts

Legacy: Connor Sparrowhawksdeath has galvanised campaigningfor better rights for disabled people P H

O T P G R A P H O F M A R K A N D S T E V E N N E A R Y C O U R T E S Y O F M A R K N E A R Y

It is vitallyimportant for

families to realise thatthey do have rightsregarding the care oftheir adult child

www.autismeye.com 13Autism |eye I ss ue 16 2014 /15

Insight

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. :
http://www.bringingustogether.org.uk/https://rightsinreality.wordpress.com/https://lbbill.wordpress.com/mailto:[email protected]://www.facebook.com/hashtag/lbbillhttp://www.centreforwelfarereform.org/http://www.irwinmitchell.com/http://www.irwinmitchell.com/http://www.centreforwelfarereform.org/http://www.facebook.com/hashtag/lbbillmailto:[email protected]://lbbill.wordpress.com/https://rightsinreality.wordpress.com/http://www.bringingustogether.org.uk/

from our winter 2014/15 issue

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