Hi Dan,
thanks. Which organisations would you suggest? The key informants to my local investigation are the advocates, as they have been complaining for months, but they have not taken any structured action. Unfortunately we do not have a local self-advocacy group as yet, so I would have to look at regional or national organisations of people with learning difficulties. Would the regional partnership board be the right place to start?
Andrea
>
> From: Dr Dan Goodley <[log in to unmask]>
> Date: 2006/07/21 Fri PM 03:43:28 BST
> To: [log in to unmask]
> CC: [log in to unmask]
> Subject: Re: 21st century institution
>
> Dear Andrea
>
> I think this letter is excellent. This abuse has to stop. Could you also call on
> the support of organisations of disabled people?
>
> good luck
>
> Dan Goodley
> Quoting Andrea Hollomotz <[log in to unmask]>:
>
> > Hello everyone,
> >
> > I have discovered a 21st century institution right at my doorstep and am
> > since then steaming with anger and driven into action. The residential home
> > concerned houses twenty-something individuals with learning difficulties in
> > England and continues to dehumanise its residents. Thanks goodness I happen
> > to have a very supportive manager and he told me to get in touch with the
> > Commission for Social Care Inspectorate and he will also support me further,
> > but I should not broadcast any more details. I am currently collecting
> > further evidence of “bad practice” from other individuals and professionals
> > within my council and I am very hopeful (I may be naïve?) that change is
> > possible. I would like to share my thoughts with you and am therefore sending
> > the initial letter I have written to the Commission for Social Care
> > Inspectorate below. Please note that although I changed all dates and names,
> > I left it in social work jargon. I am conscious of words like “learning
> > disability”, “service user” and “good practice” and “empowerment”, but
> > unfortunately one has to use them in order to be understood by other
> > professionals.
> > Please let me know if any of the points I raised could be backed up better
> > with current UK or international Human Rights legislation or any kind of
> > policy or practice guideline, as this would assist me to support my claims.
> >
> > Andrea
> >
> >
> >
> >
> > Dear CSCI,
> >
> > I would like to inform you of some considerable concerns that I have
> > regarding the provision of care at [residential home]. My concerns are mainly
> > about the institutional values which appear to inform care practice at this
> > establishment and these concerns are largely informed by my commitment to
> > anti-oppressive and anti-discriminatory social work practice, which in itself
> > is informed by guidelines outlines by Valuing People (DoH.2001), the
> > Disability Discrimination Act 1995 and the Human Rights Act 1948 as well as
> > the European Convention of Human Rights 1950.
> >
> > I visited [residential home] on the […] to speak to the staff about some
> > concerns about “attention to detail” aspects of care of my service user Ms.X,
> > which had been raised by her advocate. A meeting was held between staff 1, a
> > senior member of staff, staff 2, Ms.X’s key worker and me. I will list my
> > concerns which arouse from this meeting below:
> >
> >
> > • Lack of creativity in planning positive support
> >
> > Example: Ms.X is very conscious about her looks. She wears a wig, which looks
> > worn out. Staff 2 said that the NHS will only pay for a wig every two years,
> > that this wig is made of artificial hair and that such wigs start looking
> > ‘messy’ after a few months. I asked why Ms.X did not get a real hair wig,
> > which would look good for longer. Staff 2 said they are expensive and that
> > the NHS only contributes £250. I suggested that Ms.X could pay towards her
> > wig with money from her trust fund. Staff 2 had never thought of that. This
> > is a realistic option. As Ms.X requires assistance in advocating for such
> > things, I feel it is the key worker’s responsibility to think of creative
> > solutions to such vital issues (wearing a wig that looks messy and
> > artificial) in a women’s life.
> >
> > Example: Both my service users who reside at [residential home], Ms.X and
> > Mr.Y, are not enabled by [residential home] staffs to participate in
> > community based activities, such as College courses for adults, clubs of
> > interest, bowling, shopping etc. The activities they attend are institutional
> > (namely the local Adult Training Centre and one evening at … Club, where a
> > large group of people with learning disabilities meet) or if they are
> > supported in the community (e.g. on holidays) this happens in large groups of
> > disabled people, which is clearly not in line with Valuing People. Luckily
> > both individuals receive family support, but this is used by [residential
> > home] staffs as an excuse for inaction: e.g. “Ms.X is so busy on the weekends
> > with her [family], we do not need to provide her with alternative evening
> > activities during the week.”
> >
> > • No involvement of person with learning disabilities in decision-making
> >
> > Example: Staff 2 buys Ms.X’s clothes for her. Ms.X tends not to be present.
> > Ms.X loves shopping and keeps asking [her advocate] and me to take her
> > shopping. I find it unacceptable that her clothes are bought for her.
> >
> > • Little quality time is spend with service users
> >
> > Example: I challenged staff 2 about not taking Ms.X shopping. I was explained
> > that there are not enough members of staff to spend such 1:1 time. This makes
> > little sense, as staff 2, when shopping, is away from [residential home] and
> > her usual responsibilities. Why not take Ms.X with her?
> >
> > Example: Ms.X is very affectionate and wants to have a lot of 1:1 attention.
> > I asked why she hardly gets any. Staff 1 and staff 2 explained to me that,
> > once Ms.X gets attention, she wants more attention and when others see her
> > having attention, they will want attention too. It would become an
> > “uncontrollable problem”.
> >
> > • Dehumanization
> >
> > Example: How can an individual asking for attention become a “problem”?
> > Attention and affection are basic human needs. I suspect that individuals
> > residing at [residential home] are so used of being deprived of attention
> > from [residential home] staff that they would not even acknowledge they have
> > this need. If seeing someone else receiving such affection reminds
> > [residential home] residents of their own needs, this is not a “problem”, but
> > an opportunity.
> >
> > Example: Staff 1 and staff 2 kept using the concepts “us” and “them” when
> > differentiating themselves from their service users. Disabled people are not
> > aliens! I find this very offensive!
> > The denial of disabled people’s personhood is a form of social exclusion and
> > it is disgusting that [residential home] residents experience such treatment
> > in their own home.
> >
> > • Lack of support to enable individuals to make informed choices
> >
> > Example: Ms.X’s advocate had observed that Ms.X wears the same pair of shoes
> > on most days. I asked staff 2 why that is. She replied that Ms.X possesses
> > more than one pair of shoes, but chooses to wear the same pair most days.
> > ([Duty worker] at CSCI cynically suggested that this might be the only pair
> > that fits since Ms.X does not go shopping for her own clothes.) Staff 1 and
> > staff 2 stipulated that CSCI had told [residential home] that “THEY” (meaning
> > people with learning disabilities) should be left to their own decisions.
> >
> > I am sure that this was never said in this way. First of all: How ironic that
> > the word “choice” pops up when referring to Ms.X’s wardrobe, which is full of
> > clothes which she has not chosen. But most importantly: Good practice means
> > to enable individuals with learning disabilities to make informed choices. So
> > if Ms.X picks her black shoes again, fine, her choice, but a member of staff
> > could now suggest: “These are starting to look worn out. Why don’t you put on
> > the brown ones?” Ms.X would now either say: “Because they don’t fit.” And at
> > this point it could be decided to buy some new shoes that do fit. Or Ms.X
> > would agree that the black shoes look worn and change or she could say that
> > she really likes this pair and does not want to wear another one. In either
> > way, Ms.X would have made an informed decision, but this requires sensitive
> > staff involvement, which does not seem to be available at times.
> >
> > • Not taking the individual serious
> >
> > Example: Ms.X has been talking about wanting to leave [residential home] for
> > years. This is explained to me as “just the way Ms.X is”, the implicit
> > message being that she does not know what she is talking about.
> >
> > […]
> >
> >
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>
> --
> Dr Dan Goodley
> Reader in Disability Studies
> Co-director of Centre of Applied Disability Studies
> University of Sheffield
> School of Education
> 388 Glossop Road
> Sheffield S10 2JA
> Tel: +44 (0)114 222 8125
> Fax: +44 (0)114 279 6236
>
> http://www.shef.ac.uk/applieddisabilitystudies/
>
> Research project links:
> Parents, Professionals and Disabled Babies: Identifying
> Enabling Care
> http://www.shef.ac.uk/inclusive-education/disabledbabies/
>
> Jobs not Charity
> http://www.shef.ac.uk/jobsnotcharity
>
>
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