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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 

20 Albert Embankment 

London SE1 7TJ 

Telephone: 020 7587 1663 

Fax: 020 7582 2469 

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



Editor: Rachael Twomey 

Layout: Raffaele Teo 

Photographs: Hugh Hill, Various 

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


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 


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. 



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: 
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 


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. 



“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- 

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


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: 
or from policy 



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. 


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 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. 



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 (Source: ODINsight, November 2008). 


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 
(Source ODInsight, November 2008). rL 
INC, 9 


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. 



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 

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

February 2006 Care Services Improvement Partnership (JJ) 

National Centre for 
Independent Living 

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fost. oo Fee ee — aps FS ; ‘ 7 & 

=e: Sasa hee meet oe ’ e anne , 

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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). ; 


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 ( 
or ask at your local Jobcentre Plus or Citizen’s Advice Bureau. 



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 > 


> 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 



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 > 


> 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 , email 
us at or phone us on 0208 949 5837 

20 [Soy 


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. 


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 

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 telephone 0207 
587 1663 or write to the NCIL office address. You can visit our website at 


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 



Training and consultancy: 


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 
tribunal, the policy will cover legal costs to resist and defend 
a case and awards which may be made against you for 
unfair dismissal or discrimination. 

If you do not have experience as an employer we strongly 
recommend you take our full cover insurance. You may also 
want to contact your local direct payment support service. 

The table opposite provides a simple comparison between 
the two levels of cover: 

Personal Accident 

Personal Accident of Employee 

Errors and Omissions by 

Additional Expenses 
Infidelity of Employee 

Employment Tribunal Legal 
Defence Fees 

Employment Tribunal Awards 
and Compensation 

*All premiums include IPT at the oppropriate rate. www. 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 


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16th January 2009