Advocacy and advice
What type of advocacy do you provide?
We provide an issue based service that aims to help you sort out a particular problem by direct or none direct support, So if you need help and support to put a complaint letter together, we can assist you to do this. On the other hand you may already be in a dispute with a service provider and need someone to negotiate on your behalf, we may be able to assist you and attend any meetings, depending on their locality.
What ‘Reasonable Adjustments’ do organisations providing goods and services have to make for Disabled People?
If an organisation provides any goods or services they are required by the Equality Act 2010 to make sure that Disabled People are able to use their services, as far as is reasonable, to the same standard as non-disabled people, by making reasonable adjustments.
They cannot wait until a disabled person wants to use their services, but must think in advance about what different Disabled People might reasonably need, such as People with Learning Difficulties, or people who have visual, hearing or mobility impairments.
Reasonable adjustments include things like:
Installing a textphone so that people with hearing impairments can communicate with the organisation, or offering the alternative of instant messaging via the internet which also removes barriers to accessing the service for people who cannot, for a variety of reasons such as visual impairment or dyslexia, make notes during a phone call.
Making sure that all written information is made available in alternative accessible formats like Easy Read – written in simple language, with pictures to illustrate what the text says – which will be more accessible to People with Learning Difficulties.
Installing a ramp to the organisations premises to make them accessible to wheelchair users.
How do I know if I have been discriminated against?
Unlawful discrimination, in other words, treating some people worse than others because of a protected characteristic under equality law can take a number of different forms:
Direct discrimination is where someone is treated worse than other people – for example a charity refusing to accept someone as a service user because of their ethnic origin or disability.
Indirect discrimination is where a service or organisation does something to someone which has (or would have) a worse impact on them and other people who share a particular protected characteristic than on people who do not share that characteristic. Doing something’ can include making a decision, or applying a rule or way of doing things. This could include, for example, a service failing to provide alternative ways of communicating with them for people who cannot use the telephone.
But, in some situations treating people differently does not automatically mean that they have been discriminated against if the organisation can show that what they have done is objectively justified. For example, a service that is set up specifically to support Older People or people from a particular Faith community can justify not offering that service to other people as that is not what they are set up to do. Similarly, it would be justified for a service offering refuge for women experiencing domestic violence to exclude men from their service. If they were a general service, on the other hand, then excluding particular people because of their age, ethnic origin, disability, gender etc would be discrimination.
Who is covered by equality law?
The Equality Act 2010 applies to discrimination on the grounds of any of the ‘protected characteristics’. These are:
• gender reassignment
• pregnancy and maternity (which includes breastfeeding)
• religion or belief
• sexual orientation.
Where can I get help for dealing with debt?
Why do I have to make a contribution to my Direct Payment/Personal Budget from my benefits?
If you are a Disabled Person and receive state benefit, you are entitled to additional benefits to pay for items relating to your disability related costs and care and support needs as a Disabled Person. Therefore as the local council provide your Direct Payment/Personal Budget, both Central and Local Government take the view that you should use these additional funds to pay towards the costs of your care and support.
How do I claim benefits?
What benefits am I entitled to?
The benefits you are entitled to depend on your age, what kind of property you live in, whether you have dependents, what kind of impairments of health conditions you have and so on.
Benefits that you might be able to claim include Income Support, Employment and Support Allowance, Housing Benefit, Disability Living Allowance/Personal Independence Payment and Council Tax Benefit. You can find a full list of carers and disability benefits on the DirectGov website. There is also lots of information about benefits available from Disability Rights UK.
The Step Change Benefits Checker can also help you make sure you’re claiming all the benefits you’re entitled to.
Care and support
How do I get funding for my care and support?
You may be able to get funding from your local council Social Services or NHS, if you meet their eligibility criteria. Care and support services are not free. Most people have to pay something towards their own care and, if you do not meet the criteria you will have to pay for all of the costs.
Currently, local authorities won’t provide care services if you have more than £23,500 in savings and property (known as “capital”). However, from April 2016, this threshold will change to £118,000 of capital if you are in a care home, or £27,000 if you receive care in your own home, which means that more people will be eligible for help sooner.
How do I get an assessment from my local authority?
If you want an assessment to find out what help and support you need – like healthcare, equipment, help in your home or residential care – you will need to contact your local council Social Services. They will tell you what you need to do next.
If the local authority considers that you need support that it can provide, it may also carry out an assessment of your finances. This assessment will determine whether the local authority will meet all the cost of your care, or whether you will need to contribute towards your care cost or whether you will have to meet the full costs yourself.
How do I make a complaint about social care or health services?
If you’re not happy with the care or treatment you’ve received or you’ve been refused treatment for a condition, you have the right to complain, have your complaint investigated, and be given a full and prompt reply. The NHS Constitution explains your rights.
Most issues can be resolved without you having to make a formal complaint. Try having an informal chat with your doctor or a member of staff first. For example, if you have problems booking a GP appointment speak to the practice manager about it. If you are worried about something during your hospital outpatient appointment talk to one of the nurses or the clinic manager.
If this doesn’t solve your problem then you should make a formal complaint to your service provider. If you cannot make a complaint yourself, then you can ask someone else to do it for you.
Every NHS organisation has a complaints procedure. To find out about it, ask a member of staff, look on the hospital or trust’s website, or contact the complaints department for more information.
However, if you are not comfortable about complaining to the service provider directly, or you are unhappy with their response, then you can make a complaint to the commissioner of the services.
NHS England is responsible for purchasing primary care services such as GPs, dentists, pharmacists, optical services and some specialised services, and you should contact them if you wish to complain about any of these services. For all other health services, you should complain to your local Clinical Commissioning Group.
If you are unhappy with the outcome of your complaint you can refer the matter to the Parliamentary and Health Service Ombudsman, who is independent of the NHS and government.
Social Care services
If your complaint is about a private or voluntary care provider, contact the Care Quality Commission.
If your complaint is about your local authority social services, you can use the statutory complaints system.
The local authority should acknowledge it has received your complaint within three working days. It will inform you of how long your complaint is likely to take to investigate. The local authority must respond fully within six months, unless a different time period has been discussed and agreed with you.
Each local authority is responsible for arrangements for dealing with complaints, so contact your local authority for a copy of their complaints procedure.
If you are not satisfied with the response you receive from your local authority, you are entitled to ask the independent Local Government Ombudsman (LGO) to investigate. The Ombudsman can investigate complaints about local councils. Further information is available on the LGO website.
‘Consult & Challenge’ User Group
When do you have your Consult & Challenge meetings?
Full member Consult & Challenge meetings occur on the 3rd Wednesday of each month. Smaller sub-group meetings are arranged by the sub-group members themselves.
Is there parking available on site?
There are a limited number of parking spaces at Unity 12 (advance booking essential). However, visitors can use the public car park at the Common on Cemetery Road, which is a short walk away from Unity 12 (at the end of Lodge Road, turn right onto The Avenue (A33) and Cemetery Road is on the left after about 0.2 miles, immediately after Northlands Road). Parking is free for the first 4 hours, or £6 for the whole day. Alternatively, there is some parking on Rose Road for Blue Badge and permit holders for a maximum of 2 hours*
*If you do park on the road, a fully mobile person can easily move a vehicle to an adjacent road during the 10 minute, mid-meeting break, and still have time to get a cup of tea!
Who can join Consult & Challenge?
Membership is predominantly for Southampton residents, and those who access the city’s Health and Social Care services, however in certain cases Hampshire residents are accepted onto the group’s membership. We also have representation on the membership from both Southampton City Council and Southampton Clinical Commissioning Group.
Do you cover expenses?
Yes. All reasonable travel costs are paid. For more details please speak to the facilitator.
What are Direct Payments?
Direct Payments allows you to select and arrange your own care and support. You can choose to use Direct Payments to employ your own staff, buy support from a care agency, or to access different activities.
You can find lots more information about Direct Payments on our dedicated Direct Payments service web site: http://directpaymentssouthampton.info/
What Direct Payments support can I get from SPECTRUM?
SPECTRUM provides help and advice for Direct Payments users. We can guide you through the process of setting up your Direct Payments so you can choose how you manage any support you need. We can provide information on employing a Personal Assistant (PA) and help with the process of employing a PA such as helping you set up interviews and writing to an unsuccessful applicant for you. SPECTRUM has an online PA noticeboard for advertising any job vacancies and PAs can also post that they are looking for work. We can also provide examples and templates for record keeping.
You can find lots more information about our Direct Payments support on our dedicated Direct Payments service web site: http://directpaymentssouthampton.info/
Where can I get advice about getting into employment?
What ‘Reasonable Adjustments’ do employers have to make for Disabled People?
The Equality Act 2010 recognises that bringing about equality for Disabled People may mean changing the way in which employment is structured, the removal of physical barriers and/or providing extra support for a disabled worker. This is the duty to make reasonable adjustments. This can include things like making changes to policies or practices to remove a barrier to disabled employees, offering flexible working or home working arrangements, making changes to the physical features of the workplace, or providing extra equipment someone to assist a disabled employee. Employers are also required to make reasonable adjustments to recruitment processes to ensure Disabled People are not disadvantaged when applying for jobs.
The duty to make reasonable adjustments aims to make sure that, as far as is reasonable, a disabled worker has the same access to everything that is involved in doing and keeping a job as a non-disabled person, and that employers take proactive steps to remove or reduce or prevent the obstacles a disabled worker or job applicant faces.
In particular, the need to make adjustments for an individual worker:
must not be a reason not to promote a worker if they are the best person for the job with the adjustments in place
must not be a reason to dismiss a worker
must be considered in relation to every aspect of a worker’s job
Many factors will be involved in deciding what adjustments to make and they will depend on individual circumstances. Different people will need different changes, even if they appear to have similar impairments. Most of the adjustments that employers will need to make will not be particularly expensive, and they are not required to do more than what is reasonable for them to do. What is reasonable depends, among other factors, on the size and nature of the organisation.
If, however, an employer does nothing, and a disabled worker can show that there were barriers that the employer should have identified and reasonable adjustments they could have made, they can bring a claim against the employer in the Employment Tribunal, who may order them to pay compensation as well as make the reasonable adjustments.
Who pays for reasonable adjustments?
If something is a reasonable adjustment, the employer must pay for it. The cost of an adjustment can be taken into account in deciding if it is reasonable or not.
However, there is a government scheme called Access to Work which can help a person whose health or disability affects their work by giving them advice and support. Access to Work can help with extra costs which would not be reasonable for an employer or prospective employer to pay.
For example, Access to Work might pay towards the cost of getting to work if the disabled person cannot use public transport, or for assistance with communication at job interviews.
A person may be able to get advice and support from Access to Work if they are:
in a paid job, or
unemployed and about to start a job, or
unemployed and about to start a Work Trial, or
their disability or health condition stops them from being able to do parts of their job.
You can get more information on Access to Work from your local Job Centre Plus or the Gov.UK web site https://www.gov.uk/access-to-work
Is SPECTRUM membership free?
Yes, membership is currently free.
Who can become a member?
You have to be over 14 years of age and live or work in the geographical county of Hampshire. You also have to agree with SPECTRUM’s aims to become a member.
Do I have to be a Disabled Person to become a member?
No membership is open to non-disabled people as well who can apply to become Associate members, although they do not have voting rights. Associate Members are encouraged to fully engage with discussions and their views are taken into account when making organisational decisions.
What do I have to do to become a member?
Fill in a form either in our membership leaflet or on-line through our website. You have to agree to our organisational aims and sign up to our philosophy of Independent Living to become a member.
What benefits do I get from being a member?
You will be invited to SPECTRUM meetings and events. Once a year SPECTRUM holds it’s Annual General Meeting and you will get the opportunity to influence the way the organisation is run and elect the Management Committee, Auditors etc. You will receive a quarterly newsletter, and mailings (postal, electronic at your request). You will be informed about job opportunities.
Do I have to renew my membership?
Yes, once a year you will be sent a renewal notice where you have to agree to sign up to SPECTRUM’s aims and objectives for the next year.
Why did SCIL change its name to SPECTRUM?
Ever since 1984, SCIL has had ‘Southampton’ in its name, even though much of our work has been outside of Southampton.
Increasingly, we found people have assumed we only worked in Southampton, which resulted in us supporting less people than we should, simply through a misunderstanding.
We have always worked with Disabled People from all impairment, age and equality groups. However, some people assume we only support people with physical impairments. So, we wanted to ensure our new name removed this misunderstanding too.
We believe our new name more accurately communicates the diversity of the people we support, across all equality, impairment and age groups; as well as the diversity of the different work that we do. The SPECTRUM of colours in the logo represents positivity, diversity, vibrancy and enlightenment.
Personal health budgets for continuing care
What are Personal Health Budgets?
A Personal Health Budget is an amount of money to support your identified health and wellbeing needs. This is planned and agreed between you and your local NHS team. The aim is to give Disabled People and people with long-term health conditions greater choice and control over their healthcare and support.
How do I get SCIL Continuing Care to take over my care package?
Contact your Clinical Commissioning Group and tell them about us. If you like, you can call us on 02380 202 933 and we’ll give you more information on this.
What does “control over my own budget” mean?
We allocate spending based on your own choices as to what you wish to spend your funds on.
I’m tired of doing all my own paperwork and organising staff, can you help?
Yes. This is exactly the sort of thing we can take off your hands, leaving you free to get on with the things you want to do.
I have some carers/personal assistants that I want to keep, can I?
Yes, subject to SCILCCs employment checks. We will have to ensure they have all the training they need to carry out their job, according to our own standards and CQC regulations.
I want you to find me some new carers/personal assistants, how does that work?
We recruit and train Personal Assistants specifically for a client. We want to ensure that your staff are exactly who you need. As a result, you’ll only ever have staff that you’re 100 per cent happy with.
Who do you answer to?
To the Care Quality Commission, who ensure we adhere to the laws and standards that all care-agencies should. To the local Clinical Commissioning Group who supply your funding. And, most importantly, to you.
What makes you different from any other agency?
A lot of things. Firstly, we’re run by people with impairments. Our philosophy is “We wouldn’t put a Personal Assistant into a clients house that we wouldn’t willingly have in our own.”
We have experience, lots of it. We’ve almost certainly dealt with the agencies and organisations that you have to deal with, we’ve seen it from both sides, and that helps us do the best for you.
We’re interested in the big picture. We want to know what you want, and we want to help you get it. We’re not just here to complete a checklist, we’re here to help you get back your choice, your control.
Personalisation Expert Panel (PEP)
What is the PEP and what does it do?
The Personalisation Expert Panel is a reference group for service users and carers who live or work in Hampshire and would like to work in partnership with Hampshire County Council on improving existing services and developing new services, particularly in the area of social care.
Where are meetings held and how often?
Meetings are normally held on the 2nd Friday of every month in Winchester between 10.30am and 1pm. A light lunch is available after the meeting. Reasonable travel expenses are reimbursed and other expenses can be covered, in most circumstances. In addition, an additional attendance fee of £75 per meeting is available upon request.
What do I have to be Expert in?
We use the term ‘Expert’ to recognise the fact that Disabled People and Carers have a great deal of lived experience of using services and experiencing a wide range of barriers within society. This experience, knowledge and expertise is invaluable to Hampshire County Council in helping them know whether the services they provide are meeting the outcomes for their residents. It also helps them when designing new services.
Is it just a talking shop?
No. As well as the monthly meetings, PEP members are strongly encouraged to get involved in more specific pieces of work with Hampshire County Council. Examples of this, might be advising on how information is presented, testing out a new website, sitting on a smaller working group to develop new policies or projects. We encourage members to get involved in what interests them, and that will be different for each individual.
Will I get support when I first join?
Members of the PEP are very friendly and welcoming, however we offer a range of support for people when they first join the PEP. You are encouraged to come along to a meeting just to get a feel for how it works and what issues get discussed. We will then suggest you meet up with one or two of the PEP members to go through a short induction process. This will give you more information on the PEP, familiarise yourself with some of the jargon we use, and give you time to ask any questions you may have. We will also check whether you need any information in another format, such as in large print, easy read or in audio format. Some people also like to have a PEP mentor for the first few meetings who they can ask questions of. Other support is available on request.
Are meetings public?
The PEP aims to be open and transparent. We are funded by Hampshire County Council, however the PEP is facilitated by SPECTRUM Centre for Independent Living, a Disabled People’s organisation. The PEP was founded by a range of service users and carers in 2008, and we set the agenda and decide who to invite to meetings. Recently, members of the PEP have invited members of local health services to meetings to discuss the integration of health and social care.
All our agendas and minutes of our meetings are available on this website.
How do I find out more information?
Please contact the PEP chair, Robert Droy, by email at [email protected] or Call SPECTRUM Centre for Independent Living on 02380 330 982 and ask to leave a message.
User Led Organisations and community groups
Where can I get funding for my group?
Both your local or County Council or Community Voluntary Services or your Council, library or Citizen’s Advice Bureau can point you in the right direction, and will often have regular lists of available sources of funding. (Click on the map on the Community Action Hampshire homepage http://www.hampshirecvs.org.uk/ to find your nearest CVS). Some funding sources are open to all types of groups but many can only be applied for by legally registered organisations, so check whether you’re eligible before filling in the forms.
You will also find lots of information on different funding sources on the Advice and Guidance for ULOs and community groups page on this web site.
Where can I find transport so that I can get to meetings?
The answer varies depending on where you live. Contact the Transport Departments of your local Council, your local Community Voluntary Services (see above) or Citizen’s Advice Bureau to see what schemes might be available.
What support can you give us in starting up a new User-Led Organisation or group?
We can provide advice on how best to start up, possible local contacts provide back-office support and point you to funding sources, training and events around Hampshire. We can also provide support if you want to develop into a legally constituted organisation (this can open up a wider range of possible funding) then we have experience of helping people with that as well.
What geographical area does the ULO project cover?
Basically, we work with groups and organisations across the whole of Hampshire. However, as the project is funded by Hampshire County Council, we will not be able to allocate financial resources to support work that is exclusive to parts of the county covered by the three Unitary Authorities – i.e. Isle of Wight, Portsmouth and Southampton. This restriction does not apply to work that is based in these areas but which also benefits people in other parts of the county.
What is ‘co-production’?
We define ‘co-production’ as an equal partnership that involves Disabled People, Older People, Carers and other groups of service users at every stage in the planning, design and monitoring of policy and services.
What is a User Led Organisation?
User Led Organisations (ULOs) are groups that are run by, and for, people who use (or are potential users of) care and support services. They may be made up of Disabled People with, for example physical or sensory impairments, Older People or Carers or other groups. The critical things that they will have in common are that they are run by themselves in order to represent their own needs and lived experience of the particular forms of disadvantage or exclusion that they face.
The essential criteria for being a ULO project identified include things like being a peer-support based organisation; being run and controlled by users, and driven by the initiative, demand and lived experience of the organisation’s user/membership base; engaging the organisation’s users/members in decision-making processes; being inclusive and avoiding unjustified discrimination, and recognising diversity in terms of race, religion and belief, gender, sexual orientation, disability and age; and, representing people who face disadvantage or exclusion on one or more of these grounds.
Does the Equality Act 2010 apply to our organisation?
If your organisation, community group or charity provides any goods, facilities or services to members of the public then equality law applies to what you do.
It doesn’t make any difference whether the service you provide is free to the client or service user or if people pay towards it. The size of your organisation does not matter either.
Equality law affects everyone responsible for running your organisation or who might do something on its behalf, including staff or volunteers if you have them.
For more detailed information, see the Equality and Human Rights Commission guide – ‘What equality law means for your voluntary or community sector organisation’ – available from the EHRC web site http://www.equalityhumanrights.com/.
We are an association, does the Equality Act 2010 apply to us?
Equality law applies slightly differently to associations. An ‘association’ as this is defined by equality law is a membership based voluntary or community sector organisation that:
has 25 or more members, and
has rules which control how someone becomes a member, involving a genuine selection process such as having to be nominated or approved by other members or having to pass a test
If you think you might be an association, then you should read the Equality and Human Rights Commission guide ‘What equality law means for your association, club or society’ available from the EHRC web site http://www.equalityhumanrights.com/. This will tell you what is meant by members, associate members and guests (including prospective members and guests) and how equality law says you must behave towards them.
Volunteering at SPECTRUM
Will I have to complete an application and have an interview to be a volunteer?
To find out what people want to get out of volunteering, those interested in volunteering start by having a friendly chat with the Volunteer Manager, to look at what you would like to achieve and what we need from you.
How will my volunteer role fit with SPECTRUM’s aims as an organisation?
SPECTRUM would not be where it is today without volunteers. We recognise volunteering has the potential to increase personal development as well as contribute to the organisation and its work.
Due to the nature of my impairment I will need support with certain tasks. Can SPECTRUM provide this?
Funding provided for the volunteer project in SPECTRUM Independent Living team unfortunately does not allow us to provide Personal Assistants. However, we can consider assistive technology such as large font keyboards etc.
What are the advantages of volunteering at SPECTRUM?
Volunteering for the Independent Living Team at SPECTRUM will provide an opportunity for volunteers to be involved in the work of the organisation, work towards their own personal development goals, meet new people and be part of a friendly team. We are an organisation run by Disabled People and offer a friendly supportive environment.
What tasks can I work on as a volunteer in the Independent Living Team?
Volunteers in the team will provide Direct Payment Support, tasks which include supporting people with managing paperwork, finances, using the Personal Assistant Notice Board, supporting individuals with some aspects of recruitment, updating records, attending community groups to promote Direct Payments, signposting to community groups / support.
Will I get expenses and how can I claim them?
Basic travel expenses can be claimed providing a receipt is available.
Will training be provided?
A training and induction programme will be provided tailored to your needs. You will also have the opportunity to work with a team of volunteers who run and control their own volunteer Peer Support Group.
What support is available for volunteers?
Volunteers will receive ongoing support from the Volunteer Manager and members of the Independent Living Team. Volunteers also have the opportunity to be part of a Volunteer Peer Support Group and support each other as peer volunteers.
How much time do I have to give to volunteering?
You can give as little or as much time to the Independent Living Team as you wish according to your personal commitments, but we do need a commitment to attend and at agreed times.
I have specific skills I would like to develop. Can I develop these as a volunteer?
It is very much the aim of the Independent Living Team’s Volunteer Project to support you in developing specific skills where possible. These may be around gaining confidence, personal development, moving towards employment etc.
Can I leave if I do not like volunteering?
It is entirely up to you to decide when you start and leave your volunteer role.
Will volunteering effect my benefits?
If you are concerned about volunteering affecting your benefits, we advise you to contact the benefit agency. It is usually viewed as a positive step but notifying the correct agency is essential.
Do I need to be DBS checked?
This may be possible depending on the work you do for the Independent Living Team.
Note: SPECTRUM CIL is not responsible for the content of any of the external publications or website links listed here. Every effort has been made to make sure that the summarised information is correct but this resource is for general information purposes and is not intended to constitute legal or other professional advice.