NCIL's 'Independently' Newsletter December 2008

INDEPENDENTLY

NEWSLETTER
December 2008

Funding, costs and Individual
Budgets: NCIL responds to the
latest evidence

@
The newsletter from NCIL for disabled people
about Independent Living, Direct Payments,
Individual Budgets, Personal Assistance & more...

Also available in large print, Braille, audio tape, PC floppy disc, National Centre for
email and on Website Independent Living

IF you would like to contribute to our newsletter or have
it sent to you on a regular basis please contact:

Information Manager

National Centre for Independent Living
Ath Floor

Hampton House

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London SE1 7TJ

Telephone: 020 7587 1663

Fax: 020 7582 2469

TypeTalk: 18001 020 7587 1663
Textphone: 020 7587 1663
Minicom: 020 7587 1177

Email: info@ncil.org.uk

Website: www.ncil.org.uk

Editor: Rachael Twomey

Layout: Raffaele Teo

Photographs: Hugh Hill, Various

Cover: Photographs taken from NCIL conference 2008
Printers: Baileys & Sons

Disclaimer:

NCIL passes on information on products, services or events
offered by other organisations. This does not imply that we
endorse or support the products, services, events or
organisations concerned.

Readers are advised to check details for themselves and
make their own judgements about the merits of the products,
services or events offered.

Charity no.1113427

INDEPENDENTLY CONTENTS

OA........ Individual Budgets report
O6........ Cutting the cake fairly
O8........ User-led organisations
O8........ Independent Living research

09 ........ New Minister for Disabled People
OF teach Disability discrimination legislation
10........ Direct Payments and Mental Health Act
2........ Room booking form

14........ Christmas cards

15........ Welsh green paper

16........ Employment and support allowance
| Ae HIV/AIDS outreach in Kenya

| Personal Assistants

21........ Information service

23........ Support NCIL

Be 4 ait

Information Disclaimer:

Independently provides an opportunity for the exchange of information.
All the views expressed are not necessarily the views of NCIL.
We reserve the right to edit articles.

NCULE

INDIVIDUAL BUDCETS REPORT

As many of you know, Individual Budgets are the latest development in
what is usually referred to as ‘self-directed care’. Unlike Direct Payments,
which are funded only by social services, Individual Budgets may be fund-
ed by various sources, including Access to Work and Supporting People.
The Government say this is to give disabled people ‘more choice, flexibil-
ity and control over their personal care, as well as a better quality of life.’

NCIL supports the rollout of Individual Budgets and has been providing
support to members and Local Authorities involved in the pilot schemes. A
detailed evaluation of the Individual Budget pilots has now been pub-
lished. To read the full report, go to:

www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPoli
cyAndGuidance/DH_089505
or contact the DH Publications office on 0870 600 5522.

The report shows that Individual Budgets have brought positive change to
the lives of most disabled people who took part. The report looks at expe-
riences across particular groups. Individual Budgets were assessed as
being especially effective for people with mental health problems, for
younger physically disabled people and for people with learning disabili-
ties. As one lead officer stated:

‘People are actually living, not existing and they have stories that have
changed the hearts and minds of not only the care managers but of the
elected members.’

However, the report states that some older people did not find Individual
Budgets easy to use and did not like the idea of managing their own sup-
port. NCIL thinks this could have been due to insufficient or inappropriate
support being provided.

One misconception revealed in the review is that people who receive an

Individual Budget must take on all the administration and all responsibility
for managing the budget themselves. In fact, this need not be the case

INCZL

and the disabled person’s views
should be central in deciding how —
and by whom — Budgets are managed.

Evaluation The crucial point is that, however the

of the budget is managed, it is the disabled
Individual person who decides how it is spent.

Budgets Pilot NCIL welcomes the report’s positive

Programme findings and hopes that present and

oe ee future governments will honour its rec-

Final Report ommendations: In particular, we hope

that further research will be undertaken

to find out why some groups had a bet-

ter experience of Individual Budgets

aseecuaeas than others and how these challenges

jt erin can be addressed. We believe that work

should begin immediately on the culture
change recommended by the report so

Mark Wilberforce that inflexible service provider attitudes
about social care ‘boundaries’ do not
inhibit people’s choice and creativity in

the use of their Budget. We agree with the recommendation that support
agencies need to develop new skills and new job roles in order to help peo-
ple make the most of Budgets. Furthermore, we emphasise that CILs should
be at the heart of these developments and have the resources and capacity
to provide essential peer support and opportunities for sharing knowledge
among disabled people.

NCILis aware that some disabled people may find it difficult to believe that
culture change and adequate resourcing will become a reality. NCIL hopes
that Local Authorities will rise to the challenge and play their part in creat-
ing a social care sector fit for disabled people in the twenty first century.

NCULE

CUTTING THE CAKE FAIRLY

“The cake’s too small’ says ‘Cutting the cake fairly’ CSCI
review of eligibility criteria to access social care

The Commission for Social Care
Inspection (CSCI) has undertaken a
review of the system for accessing care
services (Fair Access to Care Services;
FACS). In October the findings of the
review were published in ‘Cutting the
cake fairly’.

A ‘cake’ was used to represent the finite
resources local authorities have to pro-
vide support services. The CSCI make
clear that local authorities need higher
budgets irrespective of how FACS is used
to divide resources: “we are unable to
avoid the conclusion that the key issue is
not simply the criteria used to assess peo-
ple’s eligibility...out the amount of
resources currently allocated — the size of the cake itself”.

Cutting the cake fairly

October 2008

The most significant concerns raised in the CSCI review on how people

access services were that the FACS system:

. Lacked clarity, transparency and fairness.

. Perpetuated the service-led approach (rather than being based on
people and their desired outcomes).

: Sustained a system which limited support to some groups of people
through a risks-based approach.

* Worked in isolation from other services (e.g. health and housing) and
from the inclusion and early-intervention agendas.

. Resulted in no information/support being provided to people who did
not meet local authority eligibility criteria.

. Failed to adapt to service reforms/improvements (Such as personali-
sation).

NCIL agrees with the CSCI findings, including that the principles of FACS
still have validity. FACS was designed to emphasise meeting people’s self-

AINCZL

defined needs, to take a human rights approach, and to focus on the holis-
tic needs of disabled people and their families/carers. The problems iden-
tified in the review concern how FACS has been implemented, which has
created inconsistency and a ‘postcode lottery’ of support.

‘Cutting the cake fairly’ is hard-hitting and states that FACS has also been
misused to cut services seen as ‘low-level’ — which the CSCI state: “has
meant that some invaluable services have been cut”.

The CSCI also highlight ‘Charging into Poverty?’ — a report based on the
findings of a snapshot survey of the impact of charges to use care servic-
es published by NCIL in June 2008 for the Coalition on Charging. The
CSCI say that, in the long-term, fundamental changes to charges would
be required and in the short-term the interaction between charges, means-
testing and personal budgets needs addressing.

NCIL has been working on interim measures to alleviate the current care
crisis. We were pleased to see the CSCI declare that: “the current system
of determining eligibility is so flawed...that immediate changes are need-
ed, particularly as long-term reforms may be at least five years away” and
include recommendations focused on defining criteria differently now to
improve access to services.

Recommendations of the report include:

. Eligibility criteria for accessing support be set in a broader context
consistent with ‘Putting People First’ and offering some level of assis-
tance and advice to everyone seeking support.

. FACS criteria be replaced with a system based on ‘priorities for inter-
vention’ and supported by a clear distinction between the assess-
ment of needs and the subsequent allocation of funding.

. A range of measures be introduced to support implementation of the
new arrangements, including improvements to the initial response
from local authorities to people seeking support.

. A standardised national resource allocation formula be established to
assist the setting of individual budgets rather than each council
devising its own system.

A full copy of the CSCI report is available at:
http:/Awww.csci.org.uk/about_us/press_releases/cutting_the_cake_fairly.aspx
or from policy @ncil.org.uk

NCULE

USER-LED ORCANISATIONS (ULOs)

NCIL has received funding from the Department of Health to contribute to
its ‘user-led organisations” work. This work is aimed at fulfilling recommen-
dation 4.3 of the government report ‘Improving the life-chances of disabled
people’ (2005) that ‘by 2010, each locality... should have a user-led organ-
isation modelled on existing Centres for Independent Living.’ User-led
organisations are defined as those that are run and controlled by the peo-
ple they serve (in this case disabled people).

NCIL will be helping a range of ULOs to build capacity (increase their
scope, impact and resources). As well as assisting at ‘Action and learn-
ing’ events attended by local organisations, NCIL is using its website as
a means of providing information and support. A section of the website
is dedicated to resources aimed at ULOs. This will include resources
produced by advanced ULOs for the use of those seeking to build capac-
ity. There will also be a discussion forum for the sharing of information
and ideas.

INDEPENDENT LIVING RESEARCH

The Independent Living Strategy, launched in March 2008, commits the
government to investigate the effectiveness of advocacy support for dis-
abled people at risk of losing choice and control.

To begin this process, Bristol University’s Norah Fry Centre has been
commissioned to find out how to better understand how independent
advocacy works at key life stages, including entry into residential care,
transition from youth to adulthood and aspects of anti-social behaviour.

The ODI will publish the conclusions of this research in summer 2009. In
the meantime, you can find out more on the ODI’s Indepdendent Living
website www.officefordisability.gov.uk/working/independentliving.asp. You
can also contact them by writing to the Office for Disability Issues, 6th Floor,
The Adelphi, 1 — 11 John Adam Street, London, WC2N 6HT or express your
views on these issues by telephoning the Equality and Human Rights
Commission (EHRC) on 0845 604 6610.

INCZL

NEW MINISTER FOR DISABLED PEOPLE

Introducing the new Minister for Disabled People

On 6 October, Jonathan Shaw MP was appointed the new vy ,
Minister for Disabled People. : )

After acknowledging the excellent work of the Rt Hon Anne
McGuire MP, who held the position since 2005, he
expressed his enthusiasm for his new role.

“| am determined to sustain the momentum towards equali-
ty for disabled people by 2025,” he said, adding he was also
keen to “press ahead with the work of the Office for Disability
Issues and the rest of Government on independent living.”

Read the minister’s full statement on the Office for Disability Issues website
at www.officefordisability.gov.uk (Source: ODINsight, November 2008).

DISABILITY DISCRIMINATION LECISLATION

Strengthening disability discrimination legislation

The Office for Disability Issues is undertaking work to strengthen disabil-
ity discrimination legislation in light of two recent court rulings.

A House of Lords ruling (Lewisham Council v Malcolm) means that it is
now more difficult for a disabled person to show that they have been dis-
criminated against for a reason related to their disability. The European
Court of Justice's judgment in the case of Coleman v Attridge Law
means that European law covering employment and vocational training
protects people from direct discrimination or harassment that arises
because of their association with a disabled person. This will affect pro-
tection under the Disability Discrimination Act (DDA).

The ODI intends to consult on the Government's response to each ruling sep-
arately but both consultations are likely to take place before the end of 2008.
Look out for further information appearing on the ODI website soon. In the
meantime, find out more about the DDA on the Office for Disability issues
web pages on the law www.officefordisability.gov.uk/resources/thelaw.asp.
(Source ODInsight, November 2008). rL
INC, 9

DIRECT PAYMENTS AND MENTAL HEALTH ACT

Mental Health Foundation demands direct payments for
detained clients

The Mental Health Foundation has attacked the government’s “discrimina-
tory” proposal to deny people detained under the Mental Health Act the
same rights to direct payments as other client groups.

Under draft Department of Health regulations, a consultatation on which
closes today, local authorities would be able to use their discretion in
offering payments to people receiving compulsory treatment.

Currently, patients receiving treatment under the Mental Health Act are
barred from direct payments. However, councils have a duty to offer pay-
ments to other client groups.

In a foreword to the regulations, lvan Lewis, former care services minister,
said the reforms were “an important change which should help to tackle
the stigma which can be associated with treatment for mental disorder”.

Clearly discriminatory

However, the foundation's head of policy, Simon Lawton-Smith, said: "A
situation where people with other disabilities are routinely offered direct
payments while many of those with mental health problems must rely on
the decision of their local authority is clearly discriminatory."

He rejected the DH's argument that there was a tension between receiv-
ing treatment on a compulsory basis and the choice over care entailed by
a direct payment.

Lawton-Smith said: “Compulsory treatment is of a medical nature in the
overwhelming majority of cases, whereas direct payments relate to
social care.”

He said any compulsory parts of a care package could be deducted from
a direct payment, which would be applied to the rest.

TOINCEL

Spurious

Lawton-Smith warned: “Local authorities have a mixed record of offering
people the benefits of new policies unless they are obliged to do so. We
must not allow spurious practical arguments to be used to deny people
with mental health problems access to direct payments, potentially one of
the most liberating aspects of health and social care reform.”

The draft regulations would also place a duty on councils to offer direct
payments to people who lack mental capacity, with the payment being
managed by a third party. (Source: Community Care, 11 November 2008).

Mental Health foundation

IPSs eae
for Mental

Health Service
Users
Survivors

Direct payments for people with mental
health problems: A guide to action

February 2006 Care Services Improvement Partnership (JJ)

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National Centre for
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WEB: www.ncil.org.uk
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NC/ rL
National Centre for
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CHRISTMAS CARDS

Buy your Christmas cards
from NCIL this year!

The cards, designed by

David Lupton, all have an
Independent Living theme
and, at £3.50 per four-card
pack, they are excellent value.

To make a purchase contact
the Information Assistant at
infoassistant@ ncil.org.uk

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WELSH CREEN PAPER

Welsh to issue green paper on long-term care reform

The Welsh assembly government today opened a national debate on the
future of adult care funding, which will inform a green paper due out next year.

A rapidly ageing population in Wales and social changes have created a
need for major reform, according to social services minister Gwenda Thomas.

Launching the five-month consultation at the assembly’s headquarters in
Cardiff, Thomas called for a wide-ranging debate on how a predicted
“large funding gap” in meeting the cost of care could be bridged.

Compulsory saving scheme floated

Professionals and the public will be asked for their views on how responsibil-
ity for funding should be shared between individuals, families and the state,
with a possible solution being a compulsory saving scheme for the public.

Other discussion points include the merits of local flexibility versus nation-
al consistency, and whether the future model should be the same for
everybody, or adapted to people’s varying needs.

Rising demand for care

Thomas pointed to “major” demographic changes that would increase
demand for care services, with official estimates suggesting that the num-
ber of over-85 year olds _in Wales will increase by almost a third over the
next ten years, from 72,000 to 93,000.

“We have to think very carefully about how the care system will need to
change in order to ensure that future needs and demands are appropriate-
ly met,” Thomas said.

She added: “It is therefore essential that as many people as possible — of
all ages and backgrounds — join in the debate and have their say.”

Twin green papers

Findings from the assembly government's consultation, will inform both

the UK government's green paper and a separate green paper for Wales.

(Source: Community Care, 11 November 2008). ;
NC@LEE

EMPLOYMENT AND SUPPORT ALLOWANCE

As of 27 October 2008, Employment and
Support Allowance (ESA) has replaced
Incapacity Benefit and Income Support paid
on the grounds of disability or ill health.

y The stated aim of ESA is to provide people
~~ who had previously been classified as ‘inca-
@ pable’ of work with opportunities to work or
to prepare for work. In order to receive ESA,
new claimants must undergo a 13-week
assessment phase, which includes an
assessment of how their health condition or impairment affects their ability to
work. This should also identify what support the person needs to help them
move into work. The aim is for people to received ‘personalised support’,
including a specially trained personal advisor and a range of further services.
If a person is assessed as being unable to work because of a severe impair-
ment or terminal illness, they will be entitled to a higher level of benefit than
the previous Incapacity Benefit.

The introduction of ESA has provoked criticism in some quarters because there
are financial sanctions (a reduction in benefit payments) for those who do not
comply with the assessment process. There are concerns that those carrying
out assessments may not have sufficient knowledge of specific impairments
(such as mental health needs) or understand what adjustments and support
are needed. This may unwittingly cause ‘non-compliance’ with the process and
mean that it is not effective in assessing people’s capability for work.

NCIL hopes that these concerns are not born out in reality and that the sup-
port packages developed are strong enough to make a real difference to the
employment prospects of disabled people. As Sue Bott, Director of NCIL has
said, ‘For too long the support disabled people need to access work has not
been strong enough — and for people unable to work the financial support has
been too low. The introduction of ESA should change both of these situations.’

For more information, go to the Employment and Support Allowance section of

Directgov's website (www.direct.gov.uk/en/DisabledPeople/FinancialSupport/esa)
or ask at your local Jobcentre Plus or Citizen’s Advice Bureau.

INCE L

HIV/AIDS AND PEOPLE WITH OTHER
DISABILITIES

Is there a relation between HIV/AIDS and other disabilities?
Yes, many research reports from Africa, and other countries,
have revealed that people with other disabilities are three
times more likely to contract HIV than the rest of general population. Their
susceptibility to HIV is due to the perception of general population that
people with disabilities are sexually inactive, sexual violence and lack of
access to, and exclusion from, HIV prevention services. Yet globally little
or no attention has been paid to this field.

As the disability rights movement moves forward at an international level,
there are also heroic and innovative initiatives taking place on a local scale
to address the impact of HIV/AIDS on people with other disabilities. Their
work represents what is possible, even within under-resourced areas and
conflict regions. It is these types of initiative that must be supported and
reinforced by the global HIV/AIDS community, so the groups can sustain
their work and so that people with disabilities living with and at risk of
HIV/AIDS around the world will have access to preventative education,
treatment and care.

The Liverpool Disability programme has been in existence since 2004 to
address the HIV/AIDS and sexual health needs of people with disabili-
ties. The programme is staffed and run by 16 people with disabilities
themselves in a mainstreamed organization. Since its inception the pro-
gram has worked to reach over 12,000 people with disabilities who have
the unique opportunity to access HIV testing, counselling, care and
treatment services.

Lessons learnt have demonstrated that Deaf to Deaf services are effec-
tive, efficient and sustainable, yet the program continues to face chal-
lenges. The 2007 Kenya National Survey for People with Disabilities
revealed that the majority of people with disabilities live in rural areas, yet
most outreach sites are located in urban areas. Reaching these rural com-
munities requires more financial and technical support, consistency, time >

NCA LIL

> and creativity than urban areas. Liverpool Disability Programme is trying
to address this challenge through the expansion of their mobile outreach
services, yet they are constrained by a lack of financial resources. The
program also still struggles to get mainstream HIV/AIDS service providers
to deliver non-stigmatizing, affirming and quality HIV services for all peo-
ple with disabilities.

Liverpool Disability Programme encourages the replication of its model in
other countries, and can serve as a source of information and support for
others who wish to become more inclusive of the Deaf community and
people with disabilities but perhaps do not know where to start.

Washington Opiyo Sati is Disability
Programme Coordinator in Nairobi,
Kenya where he leads HIV outreach §
activities. Washington is currently ®
visiting the UK, including the NCIL
offices.

TINCEL

PERSONAL ASSISTANTS

Personal Assistants and Independent Support
Nick Johnson

In 2000, | wrote a piece for PAUN the
predecessor of ‘Independently’ mak-
ing the case for Personal Assistants
(PAs) to have access to independent
support. This was not to undermine
the increased power and control
achieved by a person using Direct
Payments (and now In Control and
Individual Budgets) systems but to
ensure that a PA under pressure in
the very individualised nature of the
Direct Payments relationship had
someone else to talk to.

Interestingly, that article attracted
several responses from employers
but no PAs. Time has passed and |
know that many disabled people were concerned that external support for
PAs might undermine their employer. As an oppressed group most dis-
abled people would agree that their increased liberty should not be
achieved at the expense of someone else’s oppression and therefore PAs
should have access to other opportunities for support, training and career
development like any other employee. | am hoping we can get the debate
going again.

As | work for Social Care Association (Supporting, Caring and Assisting),
you might think, ‘Well he would say that’. In fact SCA has existed for 59
years and has evolved with the developments of the service but with the
primary objective of promoting best practice in care settings of all kinds.
When | joined the service in 1969, though not really that long ago, many
physically impaired people still ‘lived’ in Acute hospital wards (or posh
annexes of hospitals with some other name — | spent time at ‘Birdwood’ in >

NC LIL

> the grounds of Hither Green Hospital in the 1970’s, a unit occupied main-
ly by people with conditions like MS.

Most are gone and the majority of people live a more independent exis-
tence even if they are still making their way to a full level of self determi-
nation in their life.

For 20 years, we have been offering training to help people do their job
well and for much of what we do, our practice has been influenced by peo-
ple using services.

We have recently rejuvenated our membership package to make it sim-
ple and easy to take up on a product based model. We now offer a pro-
fessional indemnity policy within our membership fee for workers which
may be of particular interest to people working in a freelance or inde-
pendent settings. Of course we want nothing to go wrong and as | have
said our primary purpose is to promote best practice. However, some-
times it just does and for those occasions we need cover for the employ-
er and the employee.

For more information, visit us at www.soocialcareassociation.co.uk , email
us at info@socialcaring.co.uk or phone us on 0208 949 5837

20 [Soy

INFORMATION SERVICE

My name is Rachael Twomey and since
< August 2008 I’ve been working as
[ eo Information Manager at NCIL. My job
Everything includes being the editor — of
You Need to Independently, so if you have any com-
Know About ments or ideas on our newsletter, please
let me know.

ns

As my job title suggests, the main aim of
my role here at NCIL is to manage our
Information Service. This service is made
up of three main parts:

* Publications
‘an Information and Enquiry service
- the NCIL website

Phe Rough Guide to
Managing
Personal
Assistants

Our Publications service includes the pro-
duction and dissemination of this newsletter.
It also involves promoting, selling and
informing people about the reports and
guides NCIL produce, such as Everything
you need to know about Direct Payments
and The rough guide to managing per-
sonal assistants. If there is a subject you
would like to see NCIL cover in a new publi-
cation, | would be glad to know your views.

The Information and Enquiry service can be
accessed by telephone, email or post but
most people choose to contact us by tele- >

» phone. Between us, Banane
Nafeh (Information Assistant) and
| answer enquiries on the full
range of issues relating to
Independent Living. Most of our
calls focus on some aspect of
Direct Payments such as eligibili-
ty, charging, the duties of an
employer and working relation-
ships with personal assistants.
Our enquiries can range from a
short factual question to a detailed
analysis of the caller’s situation
and discussion of their options.
Where possible, we try to direct
people to their local Centre for
Independent Living.

The NCIL website provides an
overview of the main issues relat-
ing to Independent Living and we
hope that it is a good first stop for
people making their own ‘
enquiries. We also provide a dis- | Banane Nateh, -
cussion forum and resources foo Assistant “Wp ~_
aimed at user-led organisations. If there is information you would like to see
on our website that is currently not there, please let me know.

To contact the Information service, email info@ncil.org.uk telephone 0207
587 1663 or write to the NCIL office address. You can visit our website at
www.ncil.org.uk.

SUPPORT [Iai

You can get involved and support NCIL by:
Making a donation

Sponsoring one of our activities

Taking part in one of our campaigns
Contributing to our newsletter

Joining as a member

Using our training services

Contact us

Information: info@ncil.org.uk

Campaigning: policy@ncil.org.uk

Training and consultancy: projects@ncil.org.uk
Administration: office@ncil.org.uk

Finance: finance@ncil.org.uk

NCIL is a company limited
by guarantee registration no. 4701388

Charity no.1113427

Independent living insurance policy

At Fish, we offer two levels of cover for those taking
advantage of direct payments (Independent living) to choose
and control their own support, or fund their support/care
privately, so they can enjoy independent living. Whilst direct
payments provide welcome freedom and choice, they also
bring responsibilities and potential liabilities as personal
and care assistants are directly employed. You must by law,
whether you receive direct payments or employ someone
using your own funds, have employer's liability insurance.

Such obligations may have in the past put off some disabled
& older people from benefitting from direct payments and
enjoying greater control of their lives. Our full cover policy is
designed to ease such concerns by providing not just extended
insurance cover but access to a 24-hour employment law
advice line to help you prevent or professionally manage
any disputes. Staffed by qualified employment law advisors
this will give you immediate access to advice on issues
such as disciplinary matters, dismissal, absenteeism, health
and safety regulations, change of duties and harassment.
In addition, should an employment dispute reach court or
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a case and awards which may be made against you for
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If you do not have experience as an employer we strongly
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The table opposite provides a simple comparison between
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and Compensation

*All premiums include IPT at the oppropriate rate. www. fishinsurance.co.uk. Monday-Friday 9.00-5.00, Fish Administration is authorised and regulated by the Financial Services Authority.
Telephone calls may be monitored or recorded for security and training purposes. Fish Insurance is a trading style of Fish Administration Lid. Registered in England No. 4214119

NCEL

Copy deadline next issue

16th January 2009