Social services departments provide a range of services designed to promote independent living for people with HIV and AIDS. These services can include:

• advice and information about the kinds of support and assistance available from the council, the NHS or voluntary organisations.
• help in the home.
• meals on wheels.
• help with transport or mobility.
• respite and convalescent care, “holiday” grants for you and/or someone who cares for you.
• loans of domestic electrical equipment.
• practical adaptations in the home.
• help with telephone installation and rental.
• emotional support for people with HIV and AIDS and their carers.
• social workers and occupational therapists.
• day centres and drop in services.

Not all of these services may be available in every local authority, and where they are, eligibility for them will often be dependent on residence, health status and financial need. Many services set eligibility criteria to ensure that these services are only given to people in greatest need.  Most Councils expect you to make a contribution toward the hourly cost of providing you with some social care services – e.g. home helps. This is especially true if you receive benefits such as the care component of Disabled Living Allowance, or have other income that can be reasonably expected to defray some of the costs of the help provided.

Remember that in the main the services provided to us via Social services are those that we have a legal right to – depending upon our needs. They are not “charity”. Denial of any service that we believe we need can be challenged.

How to access social care services

In order to access these services you should be offered an `Assessment` of your needs from your local Social Services Department. This is an opportunity for you to talk in detail about your needs and find out as much as possible about the services available to you. This assessment is then written up and should then be made available to you to comment upon and correct if necessary. Depending upon your assessed (and agreed) level of need, services will be offered to you

If you are ill

If you are ill and have complex needs a care manager should be allocated to you. This person is usually a Social Worker with a budget, who can arrange access to a number of different social care services, e.g. home helps, respite care etc. Their role is to ensure that you can have the social care services which you need. The full range of services is made available to you if and when you need them. Most services are only given to people in greatest need.

If you are well

If you are well, or have fairly `low level` needs, you will be offered basic advice and support, as well as information about services available locally. These are often called `open access` services because they are open to anybody who feels that they need them. Most of the services provided by voluntary organisations are open access.

If your health changes

Most people with HIV or AIDS have fluctuations in their health, and therefore in the level of services they may require at any time. As such, care managers should flexibly re–assess the levels of care and support provided.

You are entitled to request a new assessment if you feel your care needs have changed.

Do you need a carer?

Many people living with HIV, particularly those entitled to Disability Living Allowance will be entitled to some funding for a carer. Government grants have recently increased and your carer may well be entitled to extra financial help. If you have a carer they will also be eligible for an assessment of their care needs by social services (see Caring for Someone With AIDS).

If you are unhappy with social services

In some areas, the quality of services available is very good with well trained workers and extensive consultation with people using services. Unfortunately this is not always true and there have been cases where confidentiality has been abused or services have been of a poor standard.  Such instances are increasingly rare as local authorities become more experienced in working with people with HIV or AIDS.

However, if at any time you are dissatisfied with the services you have received, you should raise the issue with the member of staff who is supposed to be helping you, or with their manager. Where this does not resolve the problem, you should make a formal complaint – local authorities are now obliged to have a formal complaints procedure for people using services, and this procedure should be made known to all people using services.

It is important to make sure you know how to complain and local authorities should have leaflets explaining how their complaints procedure works. You may also find the advice and support of voluntary AIDS service organisations and self–help organisations very helpful should you wish to pursue a complaint, and in some cases they will pursue the complaint on your behalf. Non–AIDS specific disability organisations or agencies such as the Citizens' Advice Bureau may also be able to help.

If your complaint is not resolved through the complaints procedure you may wish to contact the local Government Ombudsman. If the Local Authority refuses to assess your needs there are unreasonable delays, or if they do not provide you with the services you need you may wish to consult a solicitor who specialises in Community Care Law.

Managing community care budgets

New legislation was introduced in 1996 which allows local authorities to make direct payments to individuals so that they can purchase the community care services they require, rather than having such services provided by their local authority.

The Government is encouraging all local authorites to offer direct payments as an alternative to local authority services. By June 2001, 98% of local authorities were either running direct payments or are in the process of setting them up. Direct payments for community care were introduced following lobbying by people with disabilities, who wanted to see a system which would allow the disabled person to manage his or her own care independently.

Who is eligible for direct payments?

Anyone eligible to receive community care services who is disabled by physical illness (or a range of other disabilities) is eligible to receive direct payments. Recipients must be aged above 16 and must be willing and able to manage direct payments for themselves, and cannot have direct payments managed on their behalf by a carer or by another agency. People with dementia or other HIV–related brain impairment will not be judged eligible.

What can direct payments be used to purchase?

Direct payments can be used to pay for services such as cleaning, shopping, cooking, night sitting, basic nursing care and other forms of personal assistance which aid independent life in the community. The scheme allows the employment of a live–in `personal assistant' who may take on all of these duties if a community care assessment deems this necessary, or it may simply meet the cost of occasional `home help' type services provided by an individual chosen by the recipient, depending on the degree of need.

You should be told about the option of direct payments whenever you undergo a community care assessment – either an initial assessment or a re–assessment – if your needs change. You may have to lobby your local authority, or get an advocacy organisation such as your local self–help group for people with HIV, to advocate on your behalf as not every local authority offers direct payments to every group of disabled people.

Who can be employed to provide services?

The scheme allows recipients to choose their own paid carers, but payments cannot be used to pay close relations, spouses, partners or friends already living with you. However the current guidelines do not prevent you from employing a same–sex partner who does not live with you to provide care services if you wish to do so.

The scheme allows you to employ a personal care assistant who lives in your home, but this person must not be a relative or partner. However, exceptions may be made in rare circumstances where it is not possible to find a suitable care assistant in the locality. These regulations are designed to promote the independence of people with disabilities from their families, and to relieve the burden of unpaid care which frequently falls upon the families and partners of sick or disabled people.

Direct payments cannot be used to pay for local authority services. In other words, you cannot pay for services from your own local authority, or from local authority services in another district if you think those are better.

The scheme is likely to be particularly attractive to people with HIV who come from stigmatised social groups, since it will allow them to identify care assistance which is appropriate for them. For example, people from ethnic minorities may be able to identify someone from their own community who can provide the care they require far more easily than a local authority could do, and gay men may benefit similarly.

Recipients of direct payments will be expected to fulfil all the normal obligations of an employer, such as PAYE and National Insurance contributions, and will be required to manage their direct payments budget (for example, if they are receiving payments for care provided by two different individuals or agencies). Local authorities are expected to provide support to direct payment recipients in managing PAYE and national insurance, and in budgeting, as part of community care support.

How much money will be available to employ carers?

Personal assistance funded by direct payments will be charged at the same rates as local authority home care. The scheme is not intended to provide privatised home care `on the cheap', but no extra resources will be available to local authorities to manage the scheme. Some local authorities are likely to find it difficult to introduce direct payments in the short term because they can't calculate unit costs for all the services they provide, or because they have concerns about the effect which direct payments might have on the standard of care available to those unwilling or unable to take up direct payments.

It has been suggested that direct payments may reduce the cost of home care by 30–40%, but it is very difficult to assess how true this will be for all local authorities given the difficulties they face in establishing accurate unit costs for delivering home care services.

Recruiting a personal carer

Some disability organisations have already opened personal assistance agencies through which disabled people can recruit personal carers. If large numbers of people with HIV chose to take advantage of direct payments, AIDS voluntary organisations might be called upon to provide similar services, but it is likely that direct payments will be most attractive to people with HIV in areas with social services departments which have less experience in dealing with the needs of HIV–positive clients.

The recruitment and training of personal assistants are likely to raise a host of issues which some voluntary organisations may be well adapted to cope with, due to their previous experience of developing voluntary and care services for people with HIV. However, the direct payments system is not designed to sub–contract the community care case management of people with HIV to the voluntary sector or to private agencies.

People with disabilities have already found that peer support is essential in the management of direct payments and in the recruitment, management and training of personal assistants. Whilst there is scope for AIDS voluntary organisations and self–help groups to develop such support, ther is not always scope for this in areas where only one or two people with HIV might be taking advantage of direct payments. This raises issues of confidentiality, and of the need for a national or regional network of people with HIV receiving direct payments.

Recruiting a personal carer even if you do not satisfy the criteria for direct payments.

There is already the capacity for you to have an existing carer to provide you with your home care if your local authorities are providing or intending to provide home care services through an agency. This arrangement is known as an “informal carer arrangement” where the agency employs the person you want to provide you with your care and they then work for you. For tax and national insurance purposes your carer is employed by the agency – however they will not be asked to care for anyone else as an employee of the agency.

Resource

The National Centre for Independent Living

http://www.ncil.org.uk/

Phone: 0207 587 1663

Text phone: 0207 587 1177

Email: info@ncil.org.uk

A national charity set up to advise disabled people and people who work with them on independent living and Direct Payments for disabled people.