Social Care - Feast To Famine

posted: 08/10/2010

Feast to Famine? HIV Social Care and the AIDS Support Grant is a report on social care for HIV in England, by Andrew Pearmain, HIV Consultant Practitioner, Essex County Council. As part of this investigation he spent time at George House Trust.

What is the future for HIV social care with the end of the ring-fence protecting the AIDS Support Grant? This report looks at the current provision of local authority HIV social care, recent changes, how people find and receive HIV social care services,  how HIV social care is organised, and the community sector’s contribution. Here's the executive summary; you can download the full report by clicking here or on the image of the report cover.

1. Introduction
• Around 86 HIV-specialist social workers are supporting around 9000 people with HIV/AIDS in England; most HIV social workers have an ‘open’ caseload of around 30, including between 5 and 10 ‘active’ at any one time, and around 70 more who have recently had or will soon need support.
• The ‘de-ring-fencing’ of the AIDS Support Grant poses a major threat to HIV statutory and voluntary social care.
• HIV social work has been steadily declining, partly because of the reassertion of the ‘medical model’, but also because social services have rarely embraced it. As “good old-fashioned social work”, protected by the ASG from service plans, eligibility criteria and funding constraints, it has remained separate and untypical. For most people with HIV/AIDS receiving statutory social care, HIV social work is the service.
• This report is based on visits to sixteen local authorities in England, chosen to represent different regions, social and demographic characteristics, models of service delivery and levels of HIV infection. Research included interviews with HIV social workers, their managers and commissioners, and HIV voluntary workers, observations of visits to service-users, and related background reading.
• The most notable feature of HIV-specialist social care across England, twenty one years after the inception of the AIDS Support Grant, is its extraordinary diversity.

2. HIV Social Care: A Brief History
• HIV social care developed, towards its mid-1990s heyday, in the absence of effective medical treatments for HIV infection. The voluntary sector led the way, with a heavy emphasis on self-help and mutual support, and this shaped the statutory response.
• Gay men were disproportionately affected by HIV/AIDS, and service responses were heavily influenced by gay politics, cultures and values. The state only acted when HIV infection threatened to ‘cross over’ into the ‘general population’, but it was surprisingly ‘liberal’ in its confidential, non-judgmental support and universal alarm.
• The 1987 AIDS Control Act set the legislative framework; the AIDS Support Grant was established in 1989 to promote HIV ‘community care’ and ‘joint working’ with the NHS and the voluntary sector.
• HIV social work grew and spread steadily, with a strong sense of ‘trailblazing’ radical mission; this included pioneering and highly effective programmes of ‘AIDS Awareness Raising’ across social and other public services.
• The introduction of ‘care management’ in the 1990s created sharpening and debilitating tensions between generic and specialist social services. At around the same time, the experience of living with HIV/AIDS was being transformed for many people by effective anti-retroviral drugs, which revived ‘the medical model’.
• Changes in the HIV population since, specifically the growth in black Africans, have revived HIV stigma in new forms, challenged all HIV social care services and further complicated HIV social work.
• New Labour substantially increased the AIDS Support Grant, but just as steadily downgraded the importance of HIV by subsuming it within health strategies for ‘blood-borne viruses’ and ‘broader sexual health’.
• The historical basis for HIV-specialist social care, specifically the prejudice and discrimination and consequent stigma and shame experienced by people with HIV/AIDS, remains as much of a factor in many of their lives.

3. HIV Social Care Now
• HIV/AIDS ‘awareness’ and services are still clustered in places with substantial and influential gay populations, even with the emergence of ‘new client groups’. The AIDS Support Grant has failed to ‘nationalise’ provision.
• The service response to the needs of black Africans with HIV has generally been limited, temporary and grudging.
• There is a “massive divide” between statutory and voluntary HIV social care, with frequent mistrust and misunderstanding on both sides; but where efforts are made to define roles and boundaries, and to maintain good communication, services for people with HIV/AIDS markedly improve.
• For all the constraints and pressures, there are still examples of high-quality, effective and appreciated HIV social work; it constitutes a viable, necessary and highly professional specialism within HIV social care.

4. How People Get HIV Social Work
• There is some tension between the ‘medical’ and ‘social’ models in HIV care, and considerable variation in relationships between ‘frontline’ HIV services.
• ‘Single Access Points’ into statutory social care are not generally receptive to people with HIV/AIDS; the HIV-specialist ‘back door’ is wherever possible being retained.
• HIV social care assessments are generally rigorous and comprehensive, especially when compared to generic assessments.
• Less than 10 per cent of HIV social care cases meet the ‘critical or substantial’ FACS eligibility criteria for services. In some places, the availability of HIV-specialist services has been used to justify withholding necessary and ‘eligible’ generic social care.
• The level and quality of ‘cross-referrals’ between statutory social care and the HIV voluntary sector vary widely across the country, depending on the level of ongoing practical collaboration between them.
• ‘Self-Directed Support’ offers a chance to restore ‘good old-fashioned social work’, with the service-user in control and a healthily preventative approach, but it may prove difficult to sustain under spending cuts and ‘institutional inertia’.

5. Organisational Issues for HIV Social Work
• There is an obvious and serious tension between HIV specialist and generic social work, which can be eased by good management. Where HIV and generic social work are combined in single posts or teams, the HIV element tends to get squeezed out.
• Good HIV social work supports people throughout their HIV infection, prevents crises and keeps them well, promotes life planning and HIV treatment adherence, enables challenge to other professionals’ decisions and access to suitable generic services, and as such is demonstrably ‘cost-effective’.
• Hospital settings for HIV social work can be isolating and dominated by ‘the medical model’; for similar reasons, HIV social work does not easily fit into Drug and Alcohol teams. The most congenial setting is Physical/Sensory Impairment; the least of all is generic Adult Social Care dominated by services for older people.
• Close working relationships with NHS-based HIV services are crucial, but HIV social workers must retain some independence.
• Under ‘personalization’ or ‘transformation’ agendas, ‘outsourcing’ to other settings is being considered for HIV social work; the biggest but not insurmountable problem is preserving links back into the local authority.
• HIV infection is either recorded in code on local authority databases or on separate ‘protected’ records, or not recorded at all. This can conflict with local authority obligations to monitor and account for their social work, and with leave-cover arrangements.
• In fact there have been very few serious breaches of confidentiality in Adult Social Care – they tend to occur in other agencies - and in general people trust the security of local authority databases.

6. The HIV Voluntary Sector
• The HIV voluntary sector is diverse, complex and occasionally fractious. There are particular tensions between national, regional and local organisations.
• There needs to be a revival of HIV voluntarism and self-help, and clearer recognition of new client groups.
• The expectations of funders and commissioners can be either too vague or misguided, with limited monitoring and contracting.
• The NHS and ‘the medical model’ still dominate HIV care. Working relations between (and within) the NHS, the voluntary and statutory sectors are complex and ‘political’.
• There are opportunities as well as threats in a future without the ASG, especially in ‘Self-Directed Support’ and NHS reconfiguration, including comprehensive and coherent, integrated HIV statutory and voluntary social care, which might even be purchased by non-HIV service-users’ ‘individual budgets’.

Copies of this executive summary, and of the full ‘Feast to Famine?’ report, and presentation, consultancy and training based upon it, are available from Andrew Pearmain by e-mail or phone 07505 083 864
 

Positive Steps Bury

posted: 09/08/2010

Andrew, a gay man living in the Bury area, is setting up a social and support group for HIV positive gay men living around the whole of the north side of Manchester. Are you interested?
 

He hopes the group will be a chance to socialise and get to know other positive gay men, share information, advice and support, feel less isolated and share ideas on how to challenge stigma locally.
 

Interested men who would like to meet in Bury to plan future events, or who just want to find out about what’s arranged, should contact Andrew by email, or mobile 078 95194 575, or leave a message on the website contact page
 

Positive Steps Bury aims to develop and provide activities and services for gay men living with HIV in Northern Greater Manchester – the Bury, Bolton, Rochdale, Oldham, and Wigan districts and nearby parts of Lancashire.
 

The plan is for a social drop in - an opportunity to share experiences, views and ideas as well as access information and advice, organising activities together - visiting places of interest, walking, cycling, away weekends and other activities, and going to social events such as theatre, drinks, meals out, bingo, etc.
 

Positive Steps Bury
 

Budget Pain Worse With HIV

posted: 24/06/2010

Low income is a major problem already for many people living with HIV. The emergency budget and service cuts will now make a bad situation even worse.

Here we try to pick out how the budget that is claimed to be ‘tough but fair’ will affect people living with HIV in NW England. We find out how tough and unfair it will be on many people living with HIV.

The Institute for Fiscal Studies analysis shows that the poorest 10% of the population (typically people on benefits and workers on the minimum wage) will face the worst financial pain of the whole population. Excluding cuts in Disability Living Allowance, Housing Benefit and funding for important public services like social care, over the next five years they worked out that the spending power of the poorest 10% of the population will fall by 2.6%.

Add in the affect of changes in disability living allowance, housing benefit cuts and cuts to public services and the poorer part of the population will suffer even more than this.

The budget will cut the incomes of the richest 10% of the population by just 0.6% compared with over 2.6% for the lowest income tenth of the population. How fair is that?
 

What we have to tell you below makes for depressing reading.

We think people with HIV have a right to know how the planned changes over the next five years could affect them.

These changes are not all cast in stone. They have to go through Parliament and you can tell your MP what you think.
 

Disability Living Allowance
Many people with HIV receive Disability Living Allowance (DLA), a benefit paid at different rates to compensate for disability and mobility problems. The budget announced that people on DLA will have a strict new medical examination; these medical examinations will start in 2013. Some people will lose DLA, others will go onto a lower rate. The government aims to cut spending by £1.4 billion within two years of these medicals starting.

We do not know yet if people who have DLA ‘for life’ will have these medicals.
 

Housing Benefit
Housing Benefit / Housing Allowance will be cut after one year by 10% for people claiming Job Seekers Allowance. The amount of Housing Benefit will also be capped, depending on how many bedrooms you have.This and other changes will be cuts costing people on the benefit £1.8 billion a year.

People will either have to pay the extra for their rent from their other income, move somewhere cheaper or smaller, and if evicted for rent arrears are likely to be refused rehousing as a homeless person. Eviction for rent arrears is treated as making yourself intentionally homeless so people are not entitled to be rehoused.
 

Unemployment
There are around 2.5 million people unemployed and about 0.5 million job vacancies. Unemployment is higher in NW England than most other regions. The job vacancies are often low paid.

The budget alone will increase unemployment by another 100,000 and independent experts expect it to reach close to 3 million.

Job seeking prospects will worsen and it is already harder to find work with a condition like HIV.
 

Slow-burn cuts and taxes
Over the next five years people on benefits will slip further behind in what their benefits will be able to buy and with tax changes.

VAT rises at the beginning of January to 20% and VAT always hits people on low incomes hardest.

Most benefits will be uprated for inflation in a new way that will leave people increasingly worse off. This will cut £6 billion from benefits over the next five years.

Child Benefit is frozen for three years from next April – a £3billion cut. Parents who are working will be compensated by Tax Credits, but that doesn’t help parents who aren’t working.
 

Social Services
Local Government and other public services are most used by people who are on lower incomes. Social Services departments of local councils now face cuts of between 25-33%. Social Services provide essential services to people with HIV and they help fund HIV community services like George House Trust.

The AIDS Support Grant which is used to pay for extra support for people with HIV and community HIV services is no longer protected by a ‘ring-fence’. This means councils can now spend it on whatever they like.

We don’t know yet how cuts of between one quarter and one third will affect essential social services for people with HIV and community organisations but we should start to know more from October. We can expect some painful cuts and changes.
 

NHS cuts
The NHS in NW England has been told to save almost £1 billion within the next three years. We do not know whether this will affect people with HIV.
 

State Pension Age to rise sooner
Details are sparse but the government is planning to raise the age at which men and women will get a state pension sooner than was planned. Men who are now 59 will have to work one more year before they can claim a state pension. Pension age will be 66, not 65 as now, for men from 2016. It does not stop there.

They are consulting about raising the pesnion age to possibly 70. Pension ages for women and men could be raised by one year every five years until it reaches 70 for both sexes. If they start this in 2016 as they say they now plan to, men now aged 40 would not get a state pension until they reach 70. Three out of four people will have some disability by the age of 68. Many people with HIV (among many others) are not fit enough to work until the current pension age of 65, particularly in a region like NW England.

Benefit cuts and changes will make it harder for people with disabilities like HIV to live with a decent fair income before pension age.
 

Expect more pain
In October the government will publish its Public Expenditure Review. We can expect lots more cuts in government spending. The government is already saying that it will try to reduce cuts in education and some other public services (but it has not said that it wants to protect social services) by making even more cuts and changes to benefits.
 

Since the second world war, no government has managed to cut public spending for more than two years in a row. This government plans five years of cuts.
 

Some reputable economic commentators, and President Obama, are warning that European countries are behaving like a panicking herd, cutting spending harshly and that this has a high risk of plunging the world into recession once again. The harsh medicine of cuts could kill economic recovery and make the situation even worse.
 

Heath Inequality
The Marmot Review earlier this year was to help the government plan policies that will end harsh health inequalities. It showed that the poor die 7 years younger than the rich, and the poor become disabled 17 years sooner. Cuts to services and benefits in NW England will worsen the already bad record of ill-health, disabilities and early deaths in this region. More unemployment and low income harms people’s health and well-being.

Reductions in benefits, and those 25%+ public service cuts expected in the Autumn Spending Review are estimated to increase alcohol related deaths by about 2.8% and cardiovascular deaths by 1.2%. Both of these disproportionately affect people living with HIV. Every £80 cut in social welfare spending per person causes this, according to a Europe-wide analysis by Oxford University epidemiologist David Stuckler, reported in the Guardian on 25 June and in the British Medical Journal. There are likely to be between 6,500  and 38,000 more deaths in the next ten years. If the economy worsens, extra deaths rise steeply. Apart from benefits cuts, it is cuts to social services and health budgets especially that cause the most health harm. 

The Treasury is ending the public sector agreement with the NHS to raise the life expectancy of the poor. Marmot presented the government with a vision and plan to make sure everyone has a ‘healthy income’, enough money to live healthy lives and improve life expectancy.

The budget and cuts to come make it even more likely we will go backwards and poorer people and people with disabilities, like many people with HIV in NW England, will face worsening life expectancy and poorer health.

Sit back or act?
These changes are not all cast in stone. They have to be passed by Parliament and you can tell your MP what you think. With your postcode you can contact your own MP here.

Help for people on Low Incomes on our website

Saving AIDS Support Grant

posted: 26/05/2010

Before the election, the end of ring-fenced AIDS Support Grant for local councils was announced. The new coalition government has now said it will phase out all types of ring-fenced grants for councils.
 

National AIDS Trust has now written to Paul Burstow (Lib Dem, Sutton & Cheam in Surrey), the new Minister for State for Social Care Services, setting out the need to continue to ring-fence AIDS Support Grant after 2011.

It has also written to Anne Milton, the new Parliamentary Under-Secretary for Public Health.

The new Government has emphasised the importance of public health interventions, and NAT stress the potential public health implications of removing of the ring-fence. Because of this, and given the recent commitment to phase out ring-fenced grants for local authorities, NAT also suggests that the Grant could be paid to PCTs instead, rather than local authorities.
 

Add Your Voice

Organisations and individuals may wish to write to Paul Burstow, or their local MP, to emphasise the vital role of the ring-fenced ASG. NAT’s letter to the minister can be used by people and organisations to make the point that the ring-fence is still needed.
 

Any letters to the minister should reflect the local situation. You might emphasise these points:

• The important role ASG funding currently plays in funding local services
• The impact the loss of the ring fence would have on funding for HIV orgnaisations (it is far less likely that local authorities will continue to fund services without the ring fence - what would happen to people if support is no longer available?)
• Some case studies showing the difference the Grant makes to the lives of individuals and families in your area

NAT 2009 report on The AIDS Support Grant – Making a Difference?

 
Latest Department of Health details on ASG allocations for each council in England and how it should be spent  
 

NW England
AIDS Support Grant 2009-2010 and total HIV population by social services district
download our handy guide for NW England here

The AIDS Support Grant allocations for the current year, April 2010 – March 2011, have not been published – it should be listed as a circular here

Here is gathered information from Freedom of Information requests on AIDS Support Grant in different parts of England 

text of NAT letter to Minister

AIDS Support Grant Ending?

posted: 04/05/2010

AIDS Support Grant seems to be on its last legs - the Communities and Local Government "Smarter Government" plan shows that AIDS Support Grant (ASG) will no longer be ring fenced from April next year - 2011. Instead this money would be included in the central government area based grant to councils for providing Social Services. A copy of the Smarter Government paper is attached and ASG appears on page six.

After the general election we, NAT and other HIV organisations, will consider what we can do to keep ASG with its ring-fence.

As councils and HIV community organisations revealed in NAT's recent survey, there are serious concerns for HIV services, if the ring-fence is lifted, at a time when there are major public spending cuts on the horizon.

NAT carried out a detailed review of ASG in 2009 
 

Smarter Government proposal to abolish ASG - see page 6