Children_and_Families_Lobby_Pack

Cut out of care: RNIB campaigner’s pack to influence the Care Bill

November 2013

People living with sight loss are increasingly losing out on the support they need to get back on their feet after losing their sight.

We have a once in a generation opportunity to put things right as the Care Bill makes its way through Parliament during November and December.

Time is of the essence to ensure that blind and partially sighted people are not cut out of care. Your passion, energy and willingness to raise the issues with your MP are the things that will make the biggest difference to this campaign

This campaigner’s pack contains everything you need to influence your MP and ask them to speak out on behalf of blind and partially sighted people at the debates in Parliament this autumn. Remember, you don’t have to be an expert to make a difference to the care and support that is available for blind and partially sighted people.

If you are pressed for time, Briefing One will give you a quick overview of the campaign. The Care Bill – MP Briefing outlines the five key concerns in more detail.

We always love hearing from our campaign supporters! Don’t forget to tell us how you get on.

If you would like any help or advice, or to let us know if you receive a response to your letter or how you get on with your meeting, please contact us on the campaigns hotline:

Telephone: 020 7391 2123 or email campaigns@rnib.org.uk

List of briefings in the pack

Briefing One: Introduction to the Care Bill

This briefing contains background information about the campaign; what needs to change, why we’re campaigning now and ways you can get involved.

Briefing Two: Meeting with your MP

Here, you’ll find a step-by-step guide to meeting with your MP, a template meeting request letter and a Care Bill MP briefing which you can leave with your MP at the end of your meeting. This will help remind them of the issues and what you would like them to do.

Briefing Three: Writing to your MP

If you would prefer to write to your MP, you will find the text of a template letter to send to your MP that will make sure they’re briefed about the crisis in care facing blind and partially sighted people and how they can take action to put things right.

Briefing Four: For those who like to know more!

Sign-posting you to more information and stats.

Briefing One: Introduction to the Care Bill; clear aims and a unique opportunity

The RNIB Care campaign is calling upon Government to ensure that blind and partially sighted people are not cut out of care.

With the Care Bill going through parliament we have a once in a generation opportunity to ensure blind and partially sighted people get the support they need to feel more independent, safe and in control. The Government needs to act now and your passion, energy and willingness to raise the issues with your MP are the things that will make the biggest difference to this campaign.

What needs to change?

There are a number of big changes that the new legislation must make to stop blind and partially sighted people being cut out of care:

Access to timely rehabilitation which is not time-prescribed

Too many people who lose their sight are left isolated and alone without the offer of the necessary specialist help they need to re-learn key aspects of their lives.

Rehabilitation, for example to learn local routes using a cane, prepare a fresh meal, or perform a home lighting assessment, ought to be offered by a local authority first as a preventative measure prior to a full community care needs assessment for longer term funded care, but in many areas this just isn’t happening or is only being offered for just six weeks. Clearly something has gone seriously wrong.

A fair chance of getting social care

Rehabilitation, where it works is excellent, but it doesn’t give blind people their sight back. A large number of blind and partially sighted people still require help in the longer term to deal with many barriers to living independently and with dignity, but are being left to go it alone.

This is happening because an increasing number of local authorities are using criteria that fail to properly recognise the impact of sight loss to assess whether someone needs social care. The questions are too narrowly framed meaning assessments can feel like a pass or fail test which blind and partially sighted people are uniquely set up to fail. They are in effect, telling blind people you are not disabled enough to qualify for help.

Identifying needs

It is important for all councils to keep an up to date register of blind and partially sighted people of all ages. This would ensure sufficient support is provided and planned for the future. The Bill currently requires this for blind and partially sighted adults, but not children. Many local authorities do not keep accurate registers of disabled children. RNIB believes keeping registers would help councils plan better to meet future needs.

Re-ablement aids and adaptations

Re-ablement – swift help with aids and adaptations can make a massive difference to blind and partially sighted people maintaining independence and avoiding further accident, injury or developing a greater reliance on council or NHS services. But too often charges for help prevent quick access or use of vital equipment. Current rules allow councils to charge for equipment costing over £1,000. But this sum was set in 2003 and has not risen despite the 20% jump in equipment costs in the last decade. Its time it was raised.

Take Action!

The Care Bill will enter the Commons to be debated by MPs during November.

This is your chance to write to your MP and request that they speak out on behalf of blind and partially sighted people at the debate and to write to the Minister of State for Care and Support to raise these crucial issues. Highlight to them that we want blind and partially sighted people to get a reasonable offer of rehabilitation and a fairer chance of on-going social care.

RNIB have provided template letters which you can use, but don’t forget to include why rehabilitation and support is importance to you.

Background

Every year 23,000 people lose their sight and are certified as either blind or partially sighted in England. Invariably this has a devastating impact on their lives. Not only does sight loss have a massive emotional impact, but it also means having to re-learn pretty much every aspect of your life. How do I get down to the shops? How do I read? How do I know my house is clean? How do I cook a meal? How do I continue with my social and leisure activities and maintain friendships?

Facing Blindness Alone

Despite this, a new report ‘Facing Blindness Alone’ by RNIB shows that people living with sight loss are increasingly losing out on the support they need to get back on their feet after losing their sight. Whether it's specialist support, rehabilitation, or even help with the basics, such as learning how to cook a meal or safely get outdoors. If you are blind or partially sighted and you have care needs, the prospects of getting council care and support are fast diminishing.

Being left alone to cope with sight loss is wholly unacceptable. No matter how tight the budgets of Government are, this is essential support which must be provided. With the Care Bill going through parliament we have a once in a generation opportunity to ensure blind and partially sighted people get the support they need. The Government needs to act now.

Briefing Two: Meeting with your MP

The most effective action you can take is to meet your MP face-to-face as it really helps to convey how seriously you as their constituent, feel about this issue, and it’s a great opportunity to highlight both the issues and the opportunity your MP has to put things right.

MPs usually hold local surgeries where constituents can go and discuss these sorts of issues with them. You will find a template meeting request letter in this briefing that you can adapt and send to your MP. Someone from their office should then get in touch with you to arrange the meeting. At the end of your meeting, you can leave The Care Bill – MP Briefing with your MP to remind them of the key issues and the action they can take.

Meeting with Your MP in three easy steps

Step 1: Before you go

Who is my MP?

There are currently 650 MP's in the UK, and each one represents his or her own local constituency area. You can find out who your constituency MP is, and what their contact details are by going to http://findyourmp.parliament.uk and searching by postcode. You can also call the House of Commons on 020 7219 4272.

How do I set up a meeting?

Once you've found out how to contact your MP's office, or how to access their website, you can find out where they hold their local constituency "surgeries". Surgeries are held so you can meet your MP face-to-face and tell them about any problems that they should know about. Surgeries can be held by appointment only, or sometimes you can simply turn up.

Step 2: At your meeting

What will happen when I meet my MP?

Constituency surgeries are often held in libraries or other public buildings, but you may want to check the accessibility in advance. When you arrive, you will probably have to wait a bit to see your MP. When you do see them they may be accompanied by an aide, but don't worry - they are only present to give your MP information about the details of government policy. Your meeting will probably last about five minutes, maybe ten, but don't take it personally; MP's represent a lot of people, and do not have long to spend with each person.

What concrete actions should I ask my MP to actually take?

Ask your MP to agree to write to the Minister of State for Care and Support and ensure blind and partially sighted people can in the future access the rehabilitation and on-going social care that they need.

Tell your MP that you would especially value them asking the Minister to ensure timely rehabilitation is offered and that it is not time-limited; that blind and partially sighted people’s needs are understood when assessing eligibility for care; that a register of children with visual impairment is kept by the local authority; and that charges for services or equipment do not deter blind or partially sighted people from accessing support.

Step 3: After your meeting

What do I do if it went well?

If you have managed to get your MP to agree to take action for you, they will probably send you confirmation when they have done this - don't forget to thank them! If you get a response to your concerns and you want to reply, by all means do so. And don't be afraid to get in touch with the Campaigns team for help!

What should I do if it went badly?

If your MP wasn't very supportive or you feel you didn't get your point across, you may want to consider writing a follow up letter to reinforce the points you made.

Trouble Shooting

I'm nervous about meeting my MP!

Don't worry! Your MP meets hundreds of constituents like you during their time in office and they don't expect people to be grand orators or to have detailed knowledge of government policy. Take a friend or relative with you to see your MP, and if you contact RNIB, we may be able to match you up with another campaigner in your area who can support you by attending your meeting with you.

What if I can't get to my MP's surgery?

If you can't get to your MP's surgery because of access issues, you should be able to arrange for them to visit you somewhere more convenient, or set up a telephone meeting.

I've seen my MP before, and they weren't helpful

Different MP's will offer different levels of support, depending on their point of view. In some cases you may not be able to persuade them around to your cause, but don't let that put you off- they can still write to relevant ministers on your behalf expressing your concerns.

My MP's a member of the Cabinet; doesn't that mean that they can’t help me?

Members of the Cabinet will not vote against Government policy or sign an Early Day Motion (a kind of parliamentary petition), but they can still prove to be extremely helpful. Going to see a high profile MP can really get your cause highlighted; they are still your elected representative and can still write or speak directly to the relevant minister about your concerns on your behalf.

There's no point in lobbying because my MP is a backbench Labour MP and has no influence or power

Actually, a supportive member of the opposition can be a very useful ally. Whilst government ministers will not vote against government policy, backbenchers and members of the opposition might. Opposition MP's may be more willing to raise parliamentary questions on your behalf, or even to speak out publically on the issue. However, being in opposition doesn’t mean they will always go against the government. Whichever party your MP belongs to, they can still help your campaign by writing to relevant ministers and raising your concerns with those who have more direct influence.

I didn't vote for my MP, will they still listen to me?

Yes, absolutely. Your MP still represents everyone in your area even if they didn't vote at all.

Template meet me letter to send to your MP

Remember to personalise your letter if possible which will give it more impact with your MP.

[Insert your MP’s name here] MP

House of Commons

London

SW1A 0AA

Dear [Insert your MP’s name] MP

As one of your constituents, I would like to meet with you to discuss the Government’s Care Bill.

New research from RNIB shows a staggering lack of council care and support available to people living with sight loss – a 43 per cent drop since 2005/06. In fact, the number of people with sight loss receiving services has declined more for blind and partially sighted adults than any other group.

Early support, known as ‘rehabilitation’ makes a vital difference to someone who has sight loss as it can provide new skills that maximise a person’s independence and quality of life. However, a growing number of local authorities are restricting access to this vital support.

The Care Bill and associated regulations and guidance provide a unique opportunity to ensure that blind and partially sighted people can in the future access the rehabilitation and ongoing social care that they so obviously need.

I would appreciate your help and look forward to hearing from you in regards to arranging when I will be able to meet with you in the constituency.

Yours sincerely,

[Insert your name and full address]

A briefing for your MP

In your campaigners pack you will find ‘The Care Bill - MP Briefing’. This is a tool you can use to help your MP understand how the social care system needs improving to support blind and partially sighted people. You may want to leave a copy with your MP at the end of your meeting.

The MP Briefing covers five key issues and each is backed up by a series of points, to help you discuss the problem with your MP. You may want to discuss all the points, or perhaps just those which are most relevant to you or someone you know. Personal experience is often vital to convincing MPs of the need for change, for example lack of support or offer of rehabilitation when first diagnosed with sight loss, charges for essential care or a lack of the kind of support you need most.

The MP Briefing also contains recommendations for the Government. Please ask your MP if they agree with the recommendations and if they will do anything to support them, writing to the Care Minister for example.

The Care Bill; Committee stage MP Briefing

RNIB are members of the Care Support Alliance (CSA) and support their calls on the Bill.

RNIB welcomes the long overdue Care Bill and the wellbeing principal that runs through it. We also welcome that carers will now have a right to an assessment of their own needs. But there are some significant areas which we believe must be addressed to ensure that the essential needs of blind and partially sighted people can be met under the new care and support framework.

Meeting local care needs

The Bill requires local authorities to maintain registers of blind, partially sighted and other disabled adults. This is welcome; however there is no provision within the Bill for registers of disabled children to be kept. Under existing legislation, 1989 Children Act, Local Authorities in England are required to maintain registers of disabled children, including blind and partially sighted children. RNIB research suggests 20% of councils fail to meet this duty and 60% of local authorities fail to maintain the register effectively.

Registers provide councils with information to monitor demand for support from local blind and partially sighted children and assist authorities in planning services to meet local needs. They also act as a passport into other services, for example support from the local authority, the Blue Badge scheme and a discounted TV license.

There is a strong case that the Bill must ensure that local authorities maintain registers for both adults and children. Without effective children’s registers the adult register is undermined.

What we are calling for

RNIB is seeking MPs to amend clause 76 of the Bill to ensure registers of all blind and partially sighted children and adults are maintained by local authorities.

RNIB is also seeking an amendment to clause 71. We believe this clause should ensure that any review of the amount people contribute towards care and support services also updates and reflects the amount of funding blind and partially sighted people can receive towards equipment. The current figure has not been updated since 2003 despite a steep rise in inflation.

Parent Carers

The Government is bringing forward new and very welcome rights for carers of adults through the Care Bill and for young carers in the Children and Families Bill. However, parents caring for disabled children, including children with visual impairments under 18 years are being left out of these strengthened rights.

RNIB supports the CSA call on the Government to act on the recommendations of the Law Commission to strengthen the rights of parent carers in line with other carers and to consolidate these rights in the new legislation.

Personalised support

We believe that the Bill and regulations also need to ensure eligibility, assessments and rehabilitation services better meet the needs of blind and partially sighted people.

Too many people who lose their sight are left isolated and alone without the necessary specialist rehabilitation help they need to re-learn key aspects of their lives.

We welcome the inclusion within the Bill of a move towards prevention and ensuring that people receive the support and help that they need to live independently. A recent response to a tabled parliamentary question from Norman Lamb stated that "to maintain existing requirements for rehabilitation (intermediate care) services to be provide free of charge for up to six weeks. This duty applies regardless of people’s eligibility for care and support, and includes people with sight impairment".

RNIB warmly receive this assurance, but we would welcome this issue being included on the face of the Bill or in clear guidance for local authorities to implement from 2015.

For rehabilitation to be effective it must be provided in a timely manner and be flexible to meet the needs of the individual. Rehabilitation should be personalised (time limited but not time prescribed) to ensure it reflects blind and partially sighted people’s changing care needs and/or changes to their sight over time.

The Minister has clarified that rehabilitation services should be free for six weeks. But blind and partially sighted people tell us that authorities only provide six weeks of support in total as a result. Rehabilitation should be available for the time needed to meet an individual’s needs. Rehabilitation provides support for people to learn skills in their own home and to learn safe routes outside of the home to get to work, the shops, doctors surgery etc. This can often take longer than six weeks.

A recent statement from ADASS (Association of Directors of Adult Social Services) on rehabilitation and personalisation, states that “Rehabilitation programmes should be time limited but not time prescribed. It is not expected that a rehabilitation programme will have no end point, but due to the nature of sight loss and personal circumstances of each individual, this may not be possible to achieve within a six week period the outcomes that will truly minimise dependency”.

The unintended consequence of a rehabilitation intervention prescribed for six weeks must be addressed in the Care Bill and associated regulations.

RNIB are calling for

· Rehabilitation to be offered in a timely manner. Timely means an individual should be in receipt of individualised rehabilitation support such as aids and adaptations within four weeks of being diagnosed as sight impaired

· Rehabilitation to be flexible and offered for a time period dependent upon the assessed and ongoing needs of the individual and not prescribed to six weeks.

Improved chance of receiving social care

RNIB welcomes that the most recent draft of eligibility criteria maintains the principal that wellbeing needs of an individual should be met.

Rehabilitation, where it works, is excellent but a large number of blind and partially sighted people still require help in the longer term. But frequently blind and partially sighted people are left to deal with many barriers to living independently alone.

Living with little or no sight presents unique day-to-day challenges such as preparing meals, cleaning and maintaining a safe home environment, communication and getting out and about safely. Despite this, there has been a worrying 43% decline in the numbers of blind and partially sighted people getting council funded care and support since 2005/06.

As long ago as 2008 the care inspectorate acknowledged blind and partially sighted people's needs weren't properly being identified in care assessments. In 2010 guidance on prioritising adults’ needs, the Department of Health said blind and partially sighted people may be disadvantaged by assessors who are unaware of the impact of loss of vision. The Care Bill can put this right.

RNIB are calling for

· Secondary legislation to clearly recognise sensory loss as a separate to disabled groups, recognising that they have unique needs and challenges

· For eligibility criteria to continue to meet the principal of wellbeing and not to be based on a hierarchy of need

· For guidance to clearly set out the means of addressing the unique challenges faced by blind and partially sighted people.

Further information

For further information about this briefing or for possible case studies of peoples experience within your constituency please contact

Neil Coyle, Parliamentary Manager

Neil.Coyle@rnib.org.uk 020 7391 2382 or 020 7391 2123

Tara Melton, Campaigns Officer, Social Care

Tara.Melton@rnib.org.uk

01179 341 707 or 020 7391 2123

Briefing Three: Write to your MP!

If you are unable to meet face-to-face with your MP you can still make a difference to this campaign by sending them a letter about the Care Bill.

We have prepared a template letter below for you to use as the basis for your letter, but the more you can put in your own words and talk about your own experiences the more effective your letter will be.

Please edit or rewrite as much as you would like. If you have access to the internet, you can also take this action by emailing your MP, via our online action at:

http://bit.ly/18QTts7

Suggested text for your letter to your MP:

[insert MP name] MP

House of Commons

London

SW1A 0AA

Date: [insert the date]

The Care Bill: supporting blind and partially sighted people

Dear [insert MP name]

The current social care system is failing blind and partially sighted people. New research from RNIB shows that 25,000 fewer blind and partially sighted adults receive social care now compared with 2005 – a drop of 43%. The report, ‘Facing Blindness Alone’, is available online at: www.rnib.org.uk/campaigns

Every year 23,000 people lose their sight. This has a devastating impact. It means having to re-learn almost every aspect of your life. However, with the right practical support it is possible to make the transition and re-build your life.

Many people losing sight need specialist help from a Rehabilitation Officer to rebuild confidence and maintain control and independence. But professional help is dropping and inadequate social care services fail blind and partially sighted people. This leaves people isolated, unable to read post, get out and about, shop for basic items, clean and maintain homes and gardens, avoid falls and stay independent.

The Government has an opportunity to put things right in the Care Bill. As a constituent of yours, I would like you to write to the Minister of State for Care and Support and raise issues affecting blind and partially sighted people during the Commons debates on the Bill.

I would value you asking the Minister: to ensure timely rehabilitation is offered promptly and that it is not time limited; that blind and partially sighted people’s needs are understood when assessing eligibility for care; that a register of children with visual impairment is kept by the local authority; and that charges for services or equipment do not deter blind or partially sighted people from accessing support.

Prompt rehabilitation: I would like you to ask what plans the Government has to enable all newly blind and partially sighted people to get a prompt offer of rehabilitation and if a specific time in which to undertake an assessment of needs could be included in the Bill or later regulations. Timely help can make the crucial difference but is not currently covered on the face of the Bill.

Early support, known as ‘rehabilitation’ makes a vital difference. It provides new skills that maximise a person’s independence and quality of life. It can provide the individual the knowledge and skills they need to re-build their life and regain their independence.

Personalised rehabilitation: Rigid application of the six week re-ablement model of rehab means that for many, it is impossible to achieve the outcomes that will truly minimise dependency. It is not expected that a rehabilitation programme will have no end point, but the nature of sight loss and personal circumstances of each individual means that to be most effective, rehabilitation should be time-limited but not time-prescribed.

Eligibility: I would also like you to ensure that blind and partially sighted people are able to access support under new eligibility for social care rules. The Bill makes provisions for new eligibility criteria but it would be helpful if the government could clarify that it expects blind and partially sighted people to qualify for help under the new system during Commons discussions.

Children’s register: It is important for all councils in England, including my own, to keep an up to date register of blind and partially sighted people of all ages. This would ensure sufficient support is provided and planned for the future. Many local authorities do not keep accurate registers of disabled children. The Bill currently requires this for blind and partially sighted adults, but not children. Supporting this measure would help councils plan better to meet future needs.

Reviewing the cost of aids and adaptations: Finally, swift help with aids and adaptations can make a massive difference to blind and partially sighted people maintaining independence and avoiding further accident, injury or reliance on council or NHS services. Too often charges for help prevent quick access or use of vital equipment. Current rules allow councils to charge for equipment costing over £1,000. But this sum was set in 2003 and has not risen despite the 20% jump in equipment costs in the last decade.

It would be helpful if you could raise these issues during the passage of this very important legislation. Too many people face blindness alone. This Bill could change this everyday experience of blind and partially sighted people across the country.

I look forward to your response.

Yours sincerely,

[insert your name and full address including postcode here]

Briefing Four: Care Campaign; for those who like to know more!

Campaign report

RNIB campaign report, 2013 - ‘Facing blindness alone: what Government can do now to stop the isolation of blind people’

This is a very useful report which contains further evidence of the problem and calls to action for the Government and Department of Health. The report also clearly explains why rehabilitation is vital and why sight loss leads to substantial social care needs. It also has useful explanations of what social care and rehabilitation mean and a handy diagram showing the adult UK sight loss pathway.

You can download this from RNIB’s website at rnib.org.uk/campaign and leave a copy of the report with your MP.

Research and evidence

The campaign report and some of the key statistics used in this lobby pack come from the National Adult Social Care Intelligence Service and secondary analysis done by NatCen Social research. You can access the research yourself online via http://bit.ly/1d23qYH

Time-lines for the Bill and associated secondary legislation

The Care Bill was introduced into Parliament in the Queen's Speech in May 2013. It is expected to receive Royal Assent in March or April 2014 and will be implemented from 2015.

Research shows that care and support for blind and partially sighted people has declined more than for any other group. The Care Bill is a once-in-a-generation opportunity to reform social care legislation and put this situation right.

The Bill will start to make real progress during October and entered the important Committee Stage in the House of Commons in November. MPs are debating the issues in Parliament. Together, we must take the opportunity to shape that debate by meeting with or writing to MPs this November and December.

The Government is also calling for evidence on draft eligibility criteria for the new adult social care framework during November and then there will be a period of consultation until spring 2014.

So as well as ensuring your MP understands the importance of rehab, it is also an excellent time to ask your MP to ensure that blind and partially sighted people stand a better chance of accessing longer term care and support for ongoing care needs.

A public consultation is expected to open in Spring 2014 on the new eligibility criteria and we will be encouraging RNIB members and campaign supporters to respond.

[End]

RNIB – supporting blind and partially sighted people

Registered charity number 226227

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