- Outside of my clinic, what support can I get to help me live with HIV?
- Who provides social care?
- How do I get support?
- What happens during a social care needs assessment?
- What about carers or family members of someone living with HIV?
- What are personal budgets? Is this the same as direct payment?
- What are my rights when applying for support services?
- Am I guaranteed social care as someone living with HIV?
- What if my local authority isn’t offering the sort of support needed by people living with HIV?
- What is social care and how can it help me?
Outside of my clinic, what support can I get to help me live with HIV?
Depending on your needs, a range of social support may be available, including welfare benefits, housing and social care services. There are many types of welfare benefits available including some specifically for people with long-term health conditions such as HIV. To find out if you may be eligible for any of these, visit www.gov.uk or talk to a specialist HIV support service. You can also find out about help with housing this way. There are local HIV support organisations around the country, and you can also get information from national organisations including:
- NAT - www.lifewithhiv.org.uk
- Terrence Higgins Trust - THT Direct on 0808 802 1221 andMyHIV www.myHIV.org.uk
- NAM- http://www.aidsmap.com/e-atlas
- Positively UK - http://positivelyuk.org/
How do I get support?
Some services provided by local HIV organisations are ‘open access’ or ‘universal’ services, which means that anyone with HIV can approach the organisation directly and ask to use them (see ‘Who Provides Social Care?’). The organisation may be funded to provide services to anyone living with HIV in your local area.
If you need more intensive help – for example, if you are disabled and need help at home – you will have to ask your local authority for a needs assessment.1 Depending on the outcome of this assessment, you may be eligible for local authority-funded social care support services.
What about carers or family members of someone living with HIV?
People living with HIV may need to be cared for at times in their life, or maybe carers of family or partners.
Under The Care Act 2014, local authorities have a responsibility to also assess the support needs of carers if they appear to have such needs.
This assessment will look at the impact that caring has the carer. It will also consider what their goals are for their daily life and what support they need so that they are able to keep working, studying or participating in other activities alongside their caring responsibilities. This might mean, for example, having someone come in to help with the housework.
This support is normally provided without charge, but local authorities may ask carers to contribute to the cost in some situations. For more help and advice for carers: www.carersuk.org
[1] CARE ACT 2014 - fact sheet 8 https://www.gov.uk/government/publications/care-act-2014-part-1-factsheets/care-act-factsheets--2
What are personal budgets? Is this the same as direct payment?
The council decides how much funding you will get and then you can choose how to spend it from a range of options. For example, if you need someone to help you in your home, you can choose which care provider comes in to do this. You might also spend it on aids and adjustments to your home.
It might help with getting around, for example, transport to a peer support group.
The key is that you will not have to use the services provided by the council – it’s up to you.
Not all personal budgets will be direct payments into a bank account. You can have your funding held by the local authority or a chosen service provider, who will spend it for you when you have chosen the services you want. You can also have your budget managed for you by a family member, friend or carer.
Some local areas may not yet have full personal budget systems in place. But even here, you are still entitled to ask for direct payments to pay for your care and support.1
[1] Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations 2009 (SI 2009/1887) http://www.legislation.gov.uk/uksi/2009/1887/contents/made
What are my rights when applying for support services?
You have the right to ask for your social care needs to be assessed. A needs assessment must be given to anyone who “appears… [to have] needs for care and support “”.1 The local authority must also consider the wider needs of your family and household who may be supporting you at the moment.
Not everyone is eligible for free care services. You first have to meet the national threshold for support. The local authority will also consider your finances and in many cases will ask you to make a contribution to or cover the costs of your care. You may be able to ask for a “deferred payment agreement”, when charges are delayed and repaid to the local authority at a later date.
You are entitled to ask the local authority to arrange the care and support needs identified in your assessment – even if the local authority is not paying for the services.
Local authorities must provide information and advice on:
- what care and support is available in the area
- how to raise concerns about someone who has care or support needs
- where to get independent financial advice relating to care or support needs.
The Care Act also sets out a process for people who want to move area but need to know that they can get care in their new local authority.
If you disagree with the finding of your community care assessment, you can appeal it. You can question the findings with the assessor and ask for a review through your local authority’s usual procedures.
[1] CARE ACT 2014 https://www.gov.uk/government/publications/care-act-2014-part-1-factsheets/care-act-factsheets--2