The Care Act 2014 - RNIB - Supporting people with sight loss regsandguidance …  · Web viewThe word ‘important ... A carer was commissioned to monitor the blood sugar levels

The Care Act 2014Consultation on draft regulations and guidance for implementation of Part 1 of the Act 2015/16

Sight loss sector response This response is from RNIB, Thomas Pocklington Trust, Diabetes UK, Lincoln and Lindsay Blind Society, SeeAbility, Sunderland and North Durham Royal Society for the Blind, Action for Blind People and is also informed by the UK Vision Strategy outcomes, Seeing it My Way and priority actions.

The response has also been shaped by RNIB member representatives from across England. Member representative are blind and partially sighted who represent members in their regions and help to shape and set organisational priorities.

1. IntroductionThank you for providing the opportunity to comment on the regulations and guidance which will underpin the Care Act. We broadly support much of the guidance, and welcome sections on prevention, assessment and eligibility and information and advice.

It is important that the care needs of blind and partially sighted people are reflected if the Care Act and regulations and guidance are fit for the future. In a period of 20 years, from 2011 the population living with sight loss is estimated to increase by 55 per cent, from 1.5 million to just 2.4 million (www.rnib.org.uk/datatool).

We have chosen to answer the questions which have the most relevance for blind and partially sighted people. RNIB are members of Care Support Alliance and we support their responses to each of the sections.

Our key asks and comments of the consultation are;

1. Assessment; That blind and partially sighted people have a specialist

assessment that is conducted by a specialist assessor.

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That assessment guidance makes it clear that assessment regulations apply to the whole of the assessment process. Starting from initial contact with the local authority.

2. Eligibility That “basic care skills” include support with medication,

laundry and reading of communications. A number of blind and partially sighted people with substantial support needs already receive support with these activities.

That sight loss is included in the definition a set out in 2(1) (a) of the regulations

3. Preventing, reducing or delaying needs We welcome the inclusion that rehabilitation for blind and

partially sighted people should not be limited to six weeks and that it should be delivered to meet the needs as set out in the assessment. We also welcome the encouragement to local authorities not to charge for rehabilitation beyond six weeks given it benefits in preventing long term care needs.

Guidance should also set out that preventative support should be available as and when a person has a need and not just at the onset of a disability. That rehabilitation should also be available in a timely manner, and six months after a person has been assessed.

4. Information and Advice Clearly define what is meant by "accessible formats" Ensure local authorities plans and strategies are developed

that put a clear process in place for securing the provision of information in accessible formats. Action plans must set out how local authorities will make information and advice available in alternative formats, and how they will ensure that people accessing other information are able to receive it in an accessible format. Plans should set out clearly how this will happen.

Clearly define what is involved in providing universal information and advocacy services. Whilst it is right that this must include providing information at points where people are more likely to access information, i.e. hospitals, primary care services, local information etc, there must be a clear central point which the public can contact to request information and support, to request alternative formats and to receive verbal information and advice.

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2. General duties and universal services Wellbeing

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1. Does the draft guidance provide local authorities with the information they need to embed wellbeing into the way that they work?

2. Can you suggest some examples to illustrate how the wellbeing principle could be applied?

We support the Care Support Alliance consultation response however; we would like to make the following observations concerning blind and partially sighted people.

Paragraph 1.5 Guidance on wellbeing is welcome, and we are pleased that paragraph 1.5 clearly sets out that there is no hierarchy of needs. This is essential if the Act is to meet its objective to ensure that people receive support to meet their individual needs.

Paragraph 1.9It is welcome that paragraph 1.9 sets out that ‘meeting needs’ means recognising that everyone has different and personal needs. It is also welcome that guidance recognises that there are a range of ways in which needs can be met. However, we do not think that it is helpful to distinguish between modern and traditional models of services. Local authorities should be meeting the needs of individuals through services and support which deliver outcomes and best meet their needs. For some people this may involve domiciliary or residential support. There should be no hierarchy given over any particular service provision.

Paragraph 1.18We welcome inclusion of defining independent living and clearly linking this to the principals of wellbeing.

Paragraph 1.22Should clearly set out what is meant by the provision of information. Everyone will have a universal right to information and advice, and local authorities will have to put in place a service to ensure that this happens.

Guidance should reflect that information and advice is important to ensure that people are able to take control of their care and support and to choose the options that are right for them, but that it will not be enough to meet support needs.

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Preventing, reducing and delaying needs We support the Care Support Alliance consultation response; however, we would like to make the following observations concerning blind and partially sighted people.

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The guidance on preventing, reducing or delaying needs is broadly positive and we welcome the priority that is given to meeting care needs. The description of primary, secondary and tertiary is useful and we welcome the inclusion of rehabilitation within the tertiary category.

Priorities We welcome the inclusion that rehabilitation for blind and partially sighted people should not be limited to six weeks and that it should be delivered to meet the needs as set out in the assessment. We also welcome the encouragement to local authorities not to charge for rehabilitation beyond six weeks given it benefits in preventing long term care needs.

Guidance should also set out that preventative support should be available as and when a person has a need and not just at the onset of a disability. That rehabilitation should also be available in a timely manner, and six months after a person has been assessed.

Additional comments

Paragraph 2.35 The guidance states that an ‘appearance of need’ is ‘likely’ to trigger an assessment. In the previous legislation an appearance of need would definitely trigger a duty to provide an assessment and this is also set out in the Care Act, i.e. where it appears that they may have a need for care and support. Guidance should reflect existing legislation and the Care Act. If there is an example of where an appearance of need is only likely to trigger an assessment, then this could perhaps be reflected in a case study.

AssessmentsParagraph 2.40 and 2.41We welcome that local authorities are required to provide information about what can be done to prevent, delay, or reduce needs as a part of a care and support plan; and that if a person’s needs are not met that then they must be provided with the reason as to why in writing.

However, guidance should state that this information must be provided in an accessible format which is readable for the individual. An individual must have control over their own care and support and inaccessible information is a barrier to achieve this.

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Charging for preventative supportParagraph 2.47We welcome that guidance sets out that preventative support should be made available to a person whether or not they are eligible for ongoing care and support. This is vital in ensuring that people receive the support that they need to reduce, prevent or delay the need for care support.

Section 2 of the Care Act sets out that preventative measures may also be provided as part of a package of care and support to meet eligible needs. Guidance must provide further clarification. It is our understanding that rehabilitation and reablement services may be put in place and run concurrently with a care support package. It must be made clear in the guidance that even if a reablement or rehabilitation service is offered as part of a package of care that it must not be subject to eligibility criteria.

Paragraph 2.48We strongly welcome that guidance sets out very clearly that whilst intermediate care and reablement “are both time-limited interventions, neither intermediate care nor reablement should have a strict time limit, since the period of time for which the support is provide should depend on the needs and outcomes of the individual”. We are pleased that the guidance demonstrates the importance of meeting needs and reflects the reassurances from the Minister on this issue.

We also welcome the example that a person with a visual impairment may need to receive rehabilitation beyond six weeks and again this reflects the reassurance received from the Minister. However, we would ask ‘for a person who has recently become sight-impaired’ to be changed to ‘for a visually impaired person’. Rehabilitation is not only appropriate for those who are newly diagnosed, but also for those that have had a visual impairment for a number of years. A person’s circumstances can change, i.e. their sight may deteriorate further, they move, a friend/carer/family member is no longer able to support them etc.

We also welcome the inclusion that local authorities should consider continuing to provide rehabilitation free of charge beyond six weeks, in view of the clear preventative benefits and the reduced risk of hospital admissions. This reflects ADASS position statement on rehabilitation, reissues in December 2013 http://www.adass.org.uk/position-statement-on-visual-impairment-rehabilitation-in-the-context-of-personalisation/

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It also reflects assurances from the Minster for Care. We would however ask, for the opening line ‘Whilst the local authority does have the power to charge for such types of support’ to be removed, as this is a repetition of what has previously been set out in paragraph 2.43 and 2.44.

It is essential that the principal of free rehabilitation support for blind and partially sighted people beyond six weeks remains in final guidance. As explained by a person with a visual impairment;

“It takes longer than 6 weeks to adapt to being blind. Apart from the emotional devastation, losing what most people take for granted. You have to learn everything again; this takes time and can cause a lot of frustration. You lose your independence completely, and have to learn everything from scratch. Even simple things as making a sandwich can become a hard task. Let alone going outside and navigating the world. If new situations come up after the 6 weeks, as in having to move house, move area, you have to learn it all again”.

Preventative service at the point of needAs set out above rehabilitation services are vital to support people to adapt to living with their sight loss. However, preventative support should not just be available at time of diagnoses, but should be available when a person has a support need. Guidance must set out that preventative services are not just relevant at the start of a person’s diagnosis, but should be accessed at any time that a need is presented.

The guidance should explicitly state this principal, as in its current draft it could be interpreted that rehabilitation and reablement is to be provided at the time a person is diagnosed with a disability.

The importance of rehabilitation made available when required is explained below;

“Rehabilitation for blind and partially sighted people is essential because we are not able to pick up skills and visual clues from others as easily as

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those with full vision. Although starting rehabilitation early is essential for people losing their sight in order to equip them with the skills and knowledge they need before the worst comes, people who have been blind for a long time, even from birth, should still be offered services.

Mobility is an ongoing need because someone might move house, start a new job, want to visit shops, family, friends or leisure facilities they haven't been to before and would need someone to go through the route with them. If this service is not provided, either people with a severe sight impairment won't go out of the house very often or they will rely on family and friends to teach them the geography of the area and the route they choose might not be as safe as if a qualified rehabilitation had taught.”

Timely supportIt is essential that preventative services should be made available within a timely manner and people should not have to wait up to six months for an assessment. Registers guidance (chapter 22) states what should happen in terms of people with a visual impairment and we would urge that prevention guidance either links to this section or reflects what is set out in the guidance.

The importance of timely support is illustrated by the experiences of two blind and partially sighted people set out below;

“When sight is initially lost, it is- very distressing and confusing time. There are many questions about how it will be possible to continue to do anything, even simple, basic, everyday tasks. Prompt intervention is essential to avoid isolation and depression. Rehabilitation is necessary so that one can again be able to do things for oneself and have some purpose in life.”

“Rehabilitation support is absolutely crucial for the newly diagnosed or for people like me with long term conditions that suddenly experience deterioration in their vision. It is a lonely, frightening and depressing time and family and friends can only do so much and only understand so

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much. Access to support and advice from properly trained professionals both in the short and longer term is crucial to enabling visually impaired people to continue to lead normal lives, and to prevent the need for us to turn to emergency/institutional support because we've hit a crisis that could so easily have been managed with the right initial support. The more support we get in the early stages, and as our condition progresses, the more likely it is that we will be able to stay in our own homes and continue to work and contribute to society. Doing so means that we will also be less likely to have to rely heavily on mental health services to combat the anxiety/depression as well.”

We would welcome the opportunity to meet with Department of Health to discuss our response further.

Information and advice

We welcome the Information and Advice section of the Care Act and broadly agree with much of the associated guidance set out in the draft

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statutory guidance. However it does not satisfactorily make clear a local authority’s duty to provide accessible information.

IntroductionIt is vital that this guidance ensures local authorities are absolutely clear of their proactive obligation to meet the accessibility needs of the public when providing information and advocacy.

In a period of 20 years, from 2011 the population living with sight loss is estimated to increase by 55 per cent, from 1.5 million to 2.4 million (www.rnib.org.uk/datatool). There will be a growing demand for accessible information. Local authorities must ensure that the principals of the Care Act in supporting wellbeing, preventing and delaying needs and the universal right to information are met, along with legal obligation set out under the Equality Act.

Standard print which is a default communications format used by local authorities can be difficult or impossible to read by people with sight loss. Guidance must facilitate local authorities to fully recognise the need to put processes in place to ensure that blind and partially sighted people are given information that conforms to the definition in paragraph 3.7.

The universal right to information must be met by adhering to legal obligations set out by the Equality Act 2010 and the developing NHS Information Standard ISB 1605.

Response

Guidance must;

Clearly define what is meant by "accessible formats" such as set out in paragraph 3.19 (see below)

Ensure local authorities plans and strategies are developed that put a clear process in place for securing the provision of information in accessible formats. Action plans must set out how local authorities will make information and advice available in alternative formats, and how they will ensure that people accessing other information are able to receive it in an accessible format. Plans should set out clearly how this will happen.

Clearly define what is involved in providing universal information and advocacy services. Whilst it is right that this must include providing information at points where people are more likely to access information, i.e. hospitals, primary care services, local

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information etc, there must be a clear central point which the public can contact to request information and support, to request alternative formats and to receive verbal information and advice.

5. Views are invited about how local authorities should co-ordinate and target information to those who have specific health and care and support needs.

Co-ordinating and targeting any universal service should be built on a universal system. This should be defined in the guidance. Please see our response to paragraphs 3.10 - 3.13.

Guidance should clearly set out that local authorities must be proactive in capturing and recording information about people’s communication requirements on their client database system. In response to Equality Act 2010 and the new NHS Information Standard ISB 1605, authorities need to systematically move away from operating a default policy of assuming everyone can read standard print or on relaying people requesting alternative formats.

Guidance can provide an example of a local authority exploring ways to utilise CVI registration data held by the local authority to cross reference data, to enable them to identify the most appropriate accessible format for information and advice and trigger a process for capturing and recording information needs on their system. This strategy can be used to capture and identify other communication needs.

Paragraph 3.1 to 3.6We welcome that local authorities will have to play an active role in providing information and advice, and that the duty relates to the whole population and not just those with care and support needs. It is welcome that information should be provided on a range of areas and that local authorities should work on a case to case basis to ensure that people receive information that is relevant to them.

Paragraphs 3.7 to 3.9 TerminologyIt is useful to have the terms information, advocacy and financial information, and advice defined at an early point in the guidance. However, this could also be an appropriate place to define what is meant by accessible information. Throughout all the guidance which underpins the Act there are several important references to accessible information and each definition is slightly different.

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A definition of accessible information within this section would help to clearly set out that local authorities must provide accessible information which is in a format that is readable to that person, to ensure that an individual is able to access information and support on their own.

There is a clear definition in section 9. Deferred payment agreement; “9.21 Local authorities must provide this information and advice in formats that ensure compliance with the requirements of the Equality Act 2010 (in particular, they must ensure where appropriate information is accessible to the sensory impaired [change to people with a sensory impairment], people with learning disabilities and for people whom English is not their first language.

Paragraphs 3.10 to 3.13 The duty to establish and maintain a service It is welcome that local authorities must establish and maintain a service for providing people with information and advice (3.2). It is understood that whilst they must establish and maintain the service, that this does not mean that they are required to provide all elements of the service (3.13).

We are concerned that there is no definition as to what a universal service means, guidance must be clear on what is involved in providing universal information and advocacy services and that a universal system should be set out.

A universal system should establish the key elements of what makes a universal service. This must include that local authority must ensure that each individual client record sets out what information and advice has been requested and subsequently sent, recording if and information has been received, and identifying the preferred format etc. A universal system should also ensure that there are public access points, including a single phone number, online service and physical helpdesks. It must be clear where people can go to for information and advice.

Without establishing these principals it is difficult to envisage how a local authority can effectively operate a universal service and therefore carry out the full range of information and advice obligations described in this guidance, such as defined in 3.27, 3.29, 3.31, 3.33 and 3.55.

A universal system must also flexible to ensure that information is available at points where people are more likely to come into contact with services, i.e. hospitals, primary care services, local support centres

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etc. The system must include mechanisms for local authorities to monitor and ensure that information and advice which is being provided is both of quality and is accessible.

Information and advice can be more than providing a leaflet or signposting to an organisation. A verbal conversation with someone who understands the needs of someone with a visual impairment, particularly at the time of sight loss can be invaluable in ensuring that the person knows that they are not alone and know where to go to for future information and advice. Guidance must set out that local authorities must consider a range of ways of ensuring that people receive the support they need at the earliest opportunity.

Paragraphs 3.17 to 3.21 Accessibility information and adviceWe are concerned that this section does not clearly set out the provision of accessible information.

We welcome that the local authority should take account of information standards, and that the NHS Information Standard ISB 1605 is referenced.

In our experience local authorities do not always understand that information can be provided in a range of formats. A lack of understanding of accessible formats can be a barrier to accessing the information blind and partially sighted people need and are entitled to receive.

Guidance must clearly set out that accessible formats can mean more than providing information in Braille, and should set out that it may include clear print, large print, audio and email or attachments. Electronic forms of communication are essential for growing numbers of people with sight loss who rely on smartphones, tablets and computers with text-to-speech and screen magnification facilities.

Guidance can make clear that local authorities do not have to have all information ready in range of formats, but it is imperative for guidance to clearly set out that they must have a system in place for getting information produced in an accessible format when it is required by an individual and in a timely manner. For example, staff must understand the local authority’s policy and procedure for getting information sent out in large print at 20 point font size, Braille, in spoken word format on an audio CD, as plain text files on a data CD, as Word documents that are

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compatible with screen readers and that can be emailed as attachments, etc. These are all commonly requested formats.

Any reference to the provision of information and advice in accessible formats should be a must, throughout the regulations to ensure consistency. For example in 3.19 it reads that “Advice and information content should where possible, be provided in the manner preferred by the person…” This should, should be a must.

3.19 To provide clarity we would ask for the following sentences to be strengthened;

“Advice and information content should [delete “, where possible,”] be provided in the manner [replace “preferred” with “required”] by the person and will therefore [delete “often”] need to be available in a number of different formats”.

In the example list in 3.19 we request the addition of "large print, audio formats, Braille and accessible electronic formats" “be included on their own line in the bulleted list ideally immediately before the item on mass communications, which often exclude blind and partially sighted people..

We also think it is necessary and appropriate to include a reinforcing reference that "The local authority should have a clear active policy for producing and providing accessible information. And ensure implementation of the information standard for health and social care ref NHS ISB 1605.”

Finally, in the example list of communications methods replace ‘internet websites’ with "digital channels and online communications" which are referred to elsewhere in the guidance.

3.20 The list provided in 3.20 should separate sensory impairment and list people with a visual impairment, deafblind and hearing impaired. The methods taken to provide information for these groups of people are very different.

Paragraphs 3.24 to 3.25 When information should be providedThe bullet point listed in 3.24 “during a period of reablement;” should read “reablement and rehabilitation”. These are defined differently in ‘preventing, reducing or delaying needs’ guidance.

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The bullet point listed in 3.24 “application for disability benefits…” should include review of disability benefits, this will then capture people who may be reapplying for benefits because of a change to their disability or circumstances which may also mean that they require care support.

In considering when information should be provided, this should also include actively asking people what their required accessible format is.

Local authorities should have a system in place to capture this information so that any information can automatically be sent out in a person’s required accessible format in the future.

Paragraphs 3.26 to 3.30 Accessibility 3.26 sets out that “The local authority should ensure that products and materials (in all formats) are as accessible as possible”. However, the guidance does not set out what is meant by ‘formats’. We request that an example of large print and EasyRead are cited and cross reference given to above paragraphs detailing what accessible formats typically are. Guidance should clearly guide local authorities to proactively promote the availability of alternative formats and to ask individuals what their accessible information requirements are and to record them on their client database system for routine communications usage in future.

We recommend adding a reference to the accessibility standards set out by the Government Digital Service (GDS) and digital by default, in addition to citing Web Content Accessibility Guidelines.

3.26 sets out that “printed products should be produced to appropriate guidelines with important materials available in easy read, and telephone services should….” This should also include materials available in accessible formats for visually impaired people. The word ‘important’ should also be removed as this is determined more by the need of the individual rather than by the service. It would also be helpful to link to any ‘appropriate guidelines’. For example RNIB provide guidelines on producing accessible information.

3.26 it must be ensured that information is accessible. We think this guidance should direct local authorities to the accessibility standards required by the Government Digital Service (GDS) in their service manual at https://www.gov.uk/service-manual) where all new or

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redesigned government digital services must meet the standards from April 2014.

3.31 to 3.33 Proportionality of information and adviceWe welcome that paragraph 3.31 sets out that it is important that the right level of information and advice is provided at the right time, recognising that a person’s need for information and advice may vary depending on the circumstances.

3.32.”local authorities to have access to the support of registered social work advice when required” we welcome this inclusion, but would ask for rehabilitation staff to be included. Rehabilitation officers are qualified professionals who understand the needs of blind and partially sighted people. They provide training and support to help people to adapt to their disability. They are not necessarily registered social workers, but will be able to provide good advice regarding blind and partially sighted people.

3.49 Complaints We welcome this section but would ask for it to be included that the complaints system must be accessible, including the provision of information for blind and partially sighted people in an accessible format.

Local authorities must also produce information about their complaints policy and how to make a complaint in an accessible way i.e. if they just had that info on their website, then it wouldn't be accessible to all.

Paragraphs 3.50 to 3.65, Reviewing and developing a plan or strategyThe development of plans should also have regard to an additional common principal of ensuring that there is a clear process in place for providing information in accessible formats. Any action plans should set out how local authorities will make information and advice that they produce available in alternative formats, and how they will ensure that people accessing other information are able to receive it in an accessible format. Plans should set out a clear process for ensuring that this happens.

We know from past experience that often local authorities have no clear strategy in place on how they will provide information in an alternative format, and in addition have no procedure for providing information via accessible electronic formats, such as via email and attachments.

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3.50 We recommend clarifying that range of formats means accessible formats e.g. “range of accessible formats”.

3.65 We welcome that it covers information and advice provided by both local authorities and third parties. We would ask that the guidance in this section clearly signals that information must be made available in accessible formats of equivalent quality to standard format provisions.

We have produced the following case studies based on a positive and negative scenario. It describes via a telephone dialogue an exchange between a local authority representative / health and social care professional as they attempt to send information out to a client. The first case study sets out how active questioning using a push style approach identifies and meets an individual’s specific information needs. The second case study shows how being generally helpful still fails to identify and meet a disabled person’s information needs.

Case study 1: Paula works for the local authority and is the information provider. Elaine is her client. This dialogue comes at the end of a telephone interview and it shows how Paula pursues active questions to identify and meet Elaine’s information needs.

Paula: ok Elaine all I need to do now is get this information out to you so you can have a private read through. I have a list of formats, the first one is standard print, are you able to access that?

Elaine: No but I have someone who’ll read it to me, its fine.

Paula: I need to be sure you get confidential access to the information we send out so the other formats we can offer are EasyRead, large print at different font sizes, audio and Braille, will any of these make it accessible to you?Elaine: I can usually read print if it’s quite a bit larger than the normal text size on an ordinary letter.

Paula: Ok, there are three large print options starting at 16 point which is bigger than normal, 20 point which is bigger again and 26 point which is called giant print.

Elaine: the middle option then please.

Paula: Great and if ok with you I’ll set large print option 2 as your required reading format for all future communications.

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Thank you and call ends.

Case study 2: John works for the local authority and is the information provider. Chris is his client. As above the dialogue comes at the end of a telephone interview. It shows how the generally open and helpful approach that John uses fails to identify and meet Chris’s information needs.

John: ok Chris all I need to do now is get this information out to you so you can have a private read through. You should get it in a few days by post. Is this ok?

Chris: Yes, I have someone who reads to me so I’ll need to wait for them to pick up the mail.

John: are you ok with that then?

Chris: yes, should be fine.

John: anything else I can help you with?

Chris: don’t think so.

John: Ok any problems please don’t hesitate to call our number.Thank you and call ends.

Market shaping and commissioning

7. Does the statutory guidance provide a framework to support local authorities and their partners to take new approaches to commissioning and shaping tier local market?

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8. Are there any further suggestions of case studies or tools that can assist local authorities in carrying out their market shaping and commissioning activities?

We support Care Support Alliances consultation response. However, we would like to make the additional comments.

We support CSA in welcoming the recognition that the voluntary sector and smaller providers should not be excluded by payments for outcomes systems.

Paragraph 4.20We welcome the inclusion in guidance that local authorities should consider other relevant national standards, including those developed by NICE. However, ‘should’ should be in bold.

Paragraph 4.22We welcome the inclusion that local authorities must ensure that their commissioning practices and services delivered on their behalf comply with the requirements of the Equality Act 2010.

Paragraph 4.23 Alongside CSA, we welcome the inclusion of recognising and planning for fluctuating needs and that this section must go further to reflect other groups of people, as well as younger people and those in transition. It must recognise that a condition may fluctuate on a day to day basis, as well as over a period of time. For example someone with a visual impairment needs may fluctuate depending on the weather. For example for some bright sunlight may mean that they are unable to go out, whilst for others the darkness can be a barrier and in winter months, they may require more support to get out.

Paragraph 4.33We also support CSA welcoming of the guidance setting out that a local authority should step in to ensure continuity of care and support for people in the event of provider failure. 4.47 to 4.56 Developing local strategiesGuidance must be stronger on ensuring that local authorities develop local strategies, which understand local needs. As recognised in integration and partnership working guidance JSNAs are on their own unlikely to be sufficient to fulfil the requirement to promote integration. However, given that JSNA and JHWS are enshrined within the Health

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and Social Care Act, we believe that more can be done to promote their use and to strengthen the requirement of local authorities to work with the voluntary sector and the public when producing them.

All local authorities can develop their JSNA to support their own commissioning systems and to reflect local need. Whilst it is right that local authorities have this freedom, more should be done to ensure that JSNAs are being produced in a manner which they are able to influence commissioning decisions.

Whilst the demographic of local authorities are different, there are a number of commonalities which cover all local authorities. For example, all local authorities will have a population of people with visual impairment, and in areas where there is an increasing number of older people, this population will increase. However, RNIB research published in June 2013 showed that less than 50 per cent of all JSNAs include any reference to sight loss.

The guidance should reflect that local authorities must consider all groups of people who may require care support and that this could be done through the JSNA.

Guidance should stress the importance of implementing the learning and recommendations drawn from JSNAs, and that the demographic information isn’t left to sit within the document.

4.63 and 4.64 Understanding the market It is welcome that guidance sets that local authorities must understand local markets and develop knowledge of current and future needs for care and support services.

However in 4.64 the list of needs which local authorities should consider must also include low incidence groups and those who may require support in the future. It is important that local authorities are able to identify trends and characteristics of the support needs of low incidence groups to ensure that services can be commissioned to meet their needs.

3. First contact and indentifying needs

Needs assessments and carers assessments

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13. What further circumstances are there in which a person undergoing assessment would require a specialist assessor? Please describe why a specialist assessor is needed, and what additional training is required above the requirement for the assessor to be appropriately trained to carry out the assessment in question.

It is important that guidance makes it very clear that the regulations refer to the whole of the assessment process, right from initial contact. That staff working in contact centres must have appropriate training, have access to referring to those with specific knowledge on areas, including visual impairment and that they must make it clear to the caller that they entitled to a full assessment of their care needs.

Blind and partially sighted people require both a specialist assessor and a specialist assessment which best understand their needs. Evidence shows that there has been significant drop in the number of blind and partially sighted people who receive care. We have also heard from blind and partially sighted people about their experiences of inadequate assessments and/or being assessed by people who do not have the right knowledge ore experience.

Wellbeing guidance states that;“ (d) the need to ensure that decisions are made having regard to all the individual’s circumstances (and are not based only on their age or appearance, any condition they have, or any aspect of their behaviour which might lead others to make unjustified assumptions about their wellbeing). Local authorities should not make judgments based on preconceptions about the person’s circumstances, but should in every case work to understand their individual needs and goals;”

We know that assumptions are made about blind and partially sighted people about what they can and can’t do, and in some cases judgements are made without carrying out an assessment that a visual impairment will not meet assessment criteria.

We have spoken with some local authority staff and have been told that, there is currently a role for assessors with specialist knowledge, and "unqualified worker" rarely finishes the assessment because they realise they are out of their depth and refers on to her before it's gone too far. This expertise must be protected under new guidance, and the need for

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specialist knowledge of the needs of blind and partially sighted people must be clearly set out.

A lady with a visual impairment explained to RNIB that she has had to constantly phone her local authority to ask for support only to be told “we don’t provide support for people with a visual impairment”, and wasn’t offered an assessment.

The case of Nina demonstrates just how hard blind and partially sighted people have to fight for an assessment. After waiting for over four months for an assessment, Nina carried out her own research into the assessment process. She wrote to her local authority outlining how she met ‘critical criteria’ and how it is was against regulations for her to have to wait over four months for an assessment. Within two days, she received rehabilitation support; however it took her two years to get a full care assessment. Once Nina was assessed she met the criteria for critical care and now receives support to meet her needs.

However, not everyone is like Nina and will push for an assessment or is able to establish how they meet eligibility criteria. A specialist member of staff carrying out a specialist assessment would have meant that Nina wouldn’t have had to wait three years to receive the support she was entitled to.

Over 200 blind and partially sighted people and professionals have contacted the Department of Health setting out why a specialist assessment is so important. Some examples are shared below;

“It is critical that people with sight loss receive a specialist assessment. This will ensure that they are provided with the right support to ensure they can live independently. Too often I have seen non specialist provide generic advice to people with sight loss which is not at all helpful and can make the situation worse. Many eye conditions require specific strategies and this can only be identified through specialist assessment.”

“Vision impairment is a particularly difficult disability for people to understand both in the nature of the impairment itself and how it affects one, along with the sometimes hard to understand impact that it has on

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someone’s life. Even after 30 years of marriage my husband finds it surprising that I can see some things and not others. It can be extremely difficult and frustrating to explain to people who often have a highly simplistic view and tend to ask what you can and can't see which is really not a very meaningful question. Specialist knowledge is vital in enabling visually impaired people to communicate their needs to their assessor/supporter.”

“I know from my role as a professional and as a totally blind person that people who experience sight loss unquestioningly need assessment from a practitioner who understands the specific needs of those with sight loss: how to move around safely, the impact of sight loss on the family, how to cook safely, what methods and systems to use when cleaning one's home etc.”

“I absolutely think many visual impairments need specialist assessment. Reduced sight can be very different in how they manifest themselves and hence what areas of life this affects. For example I have significantly reduced peripheral and night vision so anything in the dark is difficult and I am apt to bump into low level objects. (Bollards, chairs, children etc), however another visually impaired person may have reduced central vision so reading etc may be difficult for them whereas I do relatively well with that.”

“One of the major weaknesses of the present system is poor quality assessment. The reasons for this are complex - poor quality social worker training etc. The wide variation in degree of visual loss and the many different visual conditions make specialist assessment essential. The assessor needs the ability to identify the implications for daily living, employment, mobility etc. for each individual.”

If the Care Act is to succeed in ensuring that people receive care and support which is personalised and meets the outcomes to improve the wellbeing of people, then blind and partially sighted people must be put on an equal footing and be assessed by trained and experienced professionals. A specialist assessment will also mean that assessors will be able to support blind and partially sighted to understand and what support they require to get the outcomes that they need and to assess fairly as to whether or not their needs meet the set eligibility criteria.

Understanding the assessment process

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Guidance establishes that the assessment process starts from first contact, for many people this may through a single access point phone number. It is likely that this is going to be the point of contact for provision of information and advice and will be central to the screening process. It is therefore vital that assessment guidance clearly state that assessment regulations cover the whole of the assessment journey. Staff at the call centres are assessing people and should be adequately trained and be able to contact those with specific knowledge for further information. It must be stressed that people are entitled to an assessment of their needs and this must be explained at initial point of contact.

Additional points

6.12; decisions as to whether an adult has eligible needs must (rather than should) be made after the assessment the financial assessment must also come after. The case study clearly outlines that eligibility decisions come after needs assessment and this must be reflected in the regulations.

In paragraph 6.13 it states that financial assessment must come after, and this should be reflected in 3.12 as well, 6.13 the local authority must assess the carer for that part of care not provided under contract etc. S. 10 (10) would seem to support this.

6.17 We welcome that local authorities are required to offer a reassessment of a person’s needs following a change in circumstances including changes to their social services provision. However, this offer must be meaningful and the onus should not simply be placed upon the adult to contact their local authority if there is a change of circumstances. The local authority must also be proactive to ensure that people are offered a reassessment. This is supported by a recent decision in the case of Gloucestershire Council; the decision found that;

"Where, however, I would take issue with the authority, is the suggestion that the task of reassessment following the judgment is satisfied by writing letters to those affected or potentially affected, and simply offering them reassessment. In some areas of the law that might be an adequate response, where those affected can be assumed to be capable of looking after their own interests, and where silence in response to an offer can be treated as acceptance or acquiescence. However, that approach is not valid in the present context. The obligation to make an assessment for community care services does not

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depend on a request, but on the "appearance" of need. Indeed under section 47(2) of the 1990 act, where it appears that a person is disabled, the authority is specifically required to make a decision as to the service he requires without waiting for a request. Of course, the authority cannot carry out an effective reassessment without some degree of co-operation from the service user or his helpers. However, that is a very different thing from saying that they can simply rest on having sent a letter of the type to which I have referred."

Eligibility

14. Do the draft eligibility regulations, together with powers to meet other needs at local discretion, describe the national eligibility threshold at a level that will allow local authorities to maintain their existing level of access to care and support in April 2015? If you believe they don’t please explain your reasons for this.

Our interpretation is that eligibility regulations could potentially make it tougher for blind and partially sighted people to be found eligible for care. The proposed regulations set out a three tier system, however, we would argue that there are four pieces of criteria which a person must meet before they are found eligible for support: firstly the person must present as having a need which is caused their physical or mental impairment or illness; they then must have need; they must be unable to significantly achieve a specified outcome; and then they must demonstrate that it will have a significant impact on their wellbeing. This is in contrast with existing criteria, in which the individual must demonstrate a need.

Under the current eligibility framework wellbeing is only considered during the last test for eligibility. Wellbeing should be embedded and considered throughout the process and not considered at the end. Arguably, if someone is unable to achieve an outcome with significant support then this would have an impact upon their wellbeing.

The criteria are further toughened as the specified outcomes include that an individual is unable to carry out ‘some or all basic care activities’. Previous draft versions of eligibility criteria required that a person “is unable to carry out one or more basic personal care activities”. A person should not have to meet all or some of the care activities, if one activity has a significant impact upon a person’s wellbeing and if they need significant support to carry out an activity then this should be enough to ensure that a person is found eligible.

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We are also concerned that the criteria refers only to if a need is caused by a physical or mental impairment or illness and that sight loss is omitted from this list. The Care Act has already set precedence indentifying sight loss as separate from other disabilities.

The Care Act defines sight loss as separate from physical disabilities, by setting out that local authorities must keep a register of people with a sight loss. As sight loss is defined separately from physical disability, regulations should reflect this, and must set out that ‘sight loss, physical disability and mental impairment’ in eligibility regulations.

Historically blind people have been listed specifically in social care statutes. In particular, s. 29 of 1948 National Assistance Act, which is currently the statutory basis for much of social services responsibilities, requires local authorities to make arrangements for promoting the welfare of persons who meet the following 'definition of disability': "blind, deaf or dumb or suffer from a mental disorder...and other persons... who are substantially and permanently handicapped by illness, injury or congenital deformity or such other disabilities as may be prescribed...".

It can be argued that it is because of this section that many local authorities produce separate local plans for people with sensory loss needs and provide specific services. The s.29 definition of disability is also used in the Children Act.

We are also concerned that weight is not given to the risk that a person is placed in, which is a component of FACs. Whilst it is right for criteria to look at impact on wellbeing and outcomes, these cannot be understood without considering the risk which a person may be placed at.

15. Do you think that the eligibility regulations give the right balance of being outcome-focused and set a threshold that can be easily understood, or would defining “basic care activities” as “outcomes” make this clearer?

It is difficult to further comment upon this question without understanding what an ‘outcome’ approach would look like. Outcomes are not the same as activities. Defining “basic care activities” as “outcomes” can lead to confusion. We are very concerned that the regulations now list “basic care activities” that only provides a narrow and strict list of activities of which some a person is measured against. The list is restrictive and does not sufficiently encompass the range of needs which people

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currently receive support with. An outcome based approach could potentially allow for support to be provided for range of needs, for example, if a person’s outcome is be safe and independent living at home, then they may receive support for a number care activities to help achieve this outcome, including support with labelling medication, shopping and keeping the home clean.

However, this is only a speculative response as there is no indication of what the Government means by an outcome focused approach.

16. Do the current definitions of “basic care activities” include all the essential care tasks you would expect? If not, what would you add?

We welcome the inclusion within basic care activities of getting around one’s home, preparing meals, and the cleaning and maintenance of one’s home. However, there are other areas missing including laundry, medication and supporting with reading of correspondence.

Whilst laundry, reading of correspondence and information, and taking of medication are not currently descriptors within FACS, the inability of individuals to undertake these tasks has made some people FACS eligible. For example with medication it is a risk to a person's health and safety not to be able to take them. A person may not take their medication at the wrong time, or the wrong dosage, could have an adverse impact upon their health. Information on medication bottles are small and not readable, a number of people currently receive support for someone to help them label their medication bottles.

People often qualify receive support for both cleaning and maintaining of their home areas. By classing them both as one ‘basic care need’ will mean that people who have substantial care needs and receive support with maintaining the home and cleaning, will not qualify for support under new eligibility. Maintenance and cleaning should be separate descriptors.

The list of basic needs also do not represent how people currently receive their care packages and on what basis they have been found eligible for that care.

Care support may be provided by a range of different individuals, for example a person may receive X hours of support and the same person will come around once a week and support with a range of tasks which

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the person has been identified as requiring support with. This may include labelling of medication, cleaning, shopping and the labelling of food items and reading of post.

The aim of the eligibility criteria is to meet the needs those who currently receive support for substantial care needs, the limited list of care activities clearly do not cover the needs which blind and partially sighted people currently receive support with.

Local authorities do currently meet the needs of people to support the management of medication. As set out in market shaping and commissioning of adult care and support guidance – that 15 minute care “may be appropriate for services like checking whether medicine has been taken. Proposed regulations and guidance will not take into account the needs of person who requires support in checking that medication has been taken, and therefore should be added to the list of “basic care activities”.

Below are a number of real examples of care packages that people with substantial needs receive support with correspondence, medication, shopping and laundry.

N is in her early thirties and lives alone. Her needs have been assessed as substantial and she receives 3 hours of support a week. This support involves with cleaning of her flat, shopping and labelling and putting away of food items, checking for sold by dates of current food items. The support also involved reading and supporting N to response to correspondence.

Mrs A is aged 60. She is registered blind with a partial hearing loss, type 2 diabetes and a dust allergy. She lives with her husband who has mobility difficulties and is easily fatigued. They both work.Mrs A has been assessed as needing 5 hours care per week. This is to: to maintain a safe and hygienic environment maintaining a dust free

home and ensuring that it is tidy to reduce the risk of falls, to maintain the home and personal appearance including assistance

with laundry tasks (hanging out washing and ironing) and changing bed linen

assistance in dealing with correspondence assistance with reading food and medication labelling (including

converting medication labels in to Braille)

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CL and DS live together. They currently need support with their laundry due to their differing needs. Although they are able to manage basic washes, if DS is washing any of her delicate items support is required. They are unable to separate the fabrics and colours and need assistance to adjust the settings on the machine.

There are several more individuals living within the same service who receive some level of support with laundry even if this is only originally marking the machine and training on how to use this.

AG lives in a flat independently. She is a competent Braille and computer user however not all her correspondence arrives in formats she can manage. Further equipment to support her to manage this independently is financially out of her reach. She receives regular support to help her to manage written mail and correspondence that she cannot manage electronically.

A woman of 88, lives alone and registered as blind is insulin dependent diabetic. This lady was assessed by a community social worker and identified the risks associated with self care. A carer was commissioned to monitor the blood sugar levels and to confirm the lady drew up the doze of insulin before the service user injected herself.

This simple task provided the woman with confidence. She informed the social worker that it gave herself belief and retained her dignity so she could enjoy her day worry free.

Lady, 76 has glaucoma. She has other care needs which she receives support for. On diagnosis, the care package was increased by one visit a day. The lady has a carer helping her with eye drops twice a day while family assist with this task on two other visits.

RG lives independently in a flat, he can make a selection of meals and manage majority of his daily living skills tasks. However he has a complex medication system requiring a different selection of tablets throughout the day.

RG cannot read Braille and has no reliable labelling system. Despite support and rehabilitation introducing a talking timer and other devices RG has not been able to manage his medication independently. He has

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a support worker several times daily to support him in this area and ensure his medication is administered correctly.

There are several more individuals living within the same service who receive support with medication. Not only is there a need for support with the preparation and organisation of taking medication but also some of those we support need assistance with the ordering and collection of medication. We also provide support in several residential services, where full support is needed with medication management due to sight loss and additional disability.

17. Are you content that the eligibility regulations will cover any currently provided for by section 21 of the National Assistance Act 1948?There are a number of aspects within the National Assistance Act which are not reflected within the eligibility criteria, including the removal of consideration of impact upon health and safety, please see response to question 16.

As set out in response to question 15, the regulations now introduce a three tier system which will make it difficult for people to be found eligible, particular given that they have to meet many or all of the outcomes and demonstrate significant impact.

18. Does the guidance adequately describe what local authorities should take into consideration during the assessment and eligibility process? If not, what further advice or examples would be helpful?

The guidance does not set out that the needs of blind and partially sighted people should be considered. Paragraph 6.74 of the guidance, omits sight loss “They [assessors] must also have the skills and knowledge to carry out the assessment of the specific condition(s) that they are being asked to assess, for example when assessing an individual who has autism, learning disabilities, mental health problems or dementia.”

Blind and partially sighted people should have a specialist assessment which is conducted by a specialist assessor. Please see response to question 13 for further information.

We would welcome the opportunity to meet with DH to further discuss our consultation response.

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4. Charging and financial assessment Charging for care and support

We support the CSA consultation response on Charging and Financial Assessment and Deferred payment agreements. However, there are some specific issues which we relate to blind and partially sighted people.

20. Do the regulations and guidance provide a clear modern framework for charging that will enable local authorities to maintain existing flexibilities in how people contribute to the cost of meeting their care needs? Are there any particular areas that are not clear?

Paragraph 8.11 of the charging and financial assessment guidance does not reflect what is set out in preventing, reducing or delaying needs guidance.

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Whilst local authorities can charge for intermediate care, including reablement for up to six weeks, prevention guidance 2.48 states that “Whilst they are both time-limited interventions, neither intermediate care nor reablement should have a strict time limit, since the period of time for which the support is provided should depend on the needs and outcomes of the individual. In some cases, for instance a period of reablement for a person who has recently become sight-impaired, the support may be expected to last longer than six weeks.

The guidance goes on to set out that not charging beyond six weeks can have “clear preventative benefits to the individual and, in many cases, the reduced risk of hospital admission”.

The recommendation that rehabilitation for blind and partially sighted people should not be charged for beyond six weeks and that that the service should be delivered to meet the agreed assessed outcomes has come from assurances from the Minister of Care.

RNIB are currently in discussions with Department of Health to tweak paragraph 2.48 to ‘a person who is sight impaired’ as rehabilitation is appropriate to people at different stages of their sight loss journey.

Accessible informationWe welcome that throughout most of the guidance there is a strong emphasis on the need for people to receive information about their care and support in a format which is accessible to the individual.

In section 9 Deferred payment agreement, paragraph 9.21 explicitly states that “Local authorities must provide this information (deferred payment schemes) and advice in formats that ensure compliance with the Equality Act 2010 (in particular they must ensure where appropriate that the information is accessible to the sensory impaired, people with learning disabilities, and people with whom English is not their first language).

This is a welcome inclusion, however this should be reflected in all sections concerning Charging and financial assessment. Section 8 should explicitly state that all information regarding choices and decisions should be made available in an accessible format.We would also ask for ‘the sensory impaired’ to be changed to a person with a sensory impairment.

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Disability Related ExpenditureAnnex C: Treatment of income sets out a list of items which should be considered as disability – related expenditure. This list does not take into consideration the changing nature of technology. For many blind and partially sighted people having access to the internet is an essential disability related item.

Many blind and partially sighted people are isolated because of their disability related communication details, they are not able to access a range of information and advice and services.

For example, a person with a visual impairment may struggle to go shopping, as this involves a number of stressful steps – i.e. getting to the supermarket and negotiating buses and roads, then shopping for the right items and then getting the shopping home. For many people internet shopping is essential, as they are not dependent upon support from a sighted guide and have access to offers and can purchase more as they don’t have to carry the shopping back home. It is important to consider that a person with a visual impairment is not able to use both hands for shopping, as they may have a guide dog or a white cane to use to support with their mobility.

The sight loss sector and Sense are calling for internet for blind and partially sighted and deafblind people to be included as a disability-related expenditure.

Running through the core of the Care Act is the principal of wellbeing and the universal right to information and advice. The recognition of access to the internet as a disability related expenditure will mean that people will not have to make the decision not to have the internet based on affordability.

There is precedence set in some disability related benefits, for example a person in receipt of Disability Students Allowance the cost of internet connection is accounted for.

Paul Jarman

Paul is visually impaired and describes the internet as a portal into the seeing world – in enabling him to access information that sighted people take for granted. For example he explains that if a sighted person wants to access information, they can go to a library, pick up a book, buy an

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appropriate magazine which provides them with the information that they need.

The internet is also a portal into shopping, he provided the example that if he wanted to shop for clothes, food or a gift he would have to wait until a friend or family member could accompany him on a trip out, he would be held by their schedule and then they would have to explain what goods were on offer, what an item looked like, what the colour is, etc and would inevitably involve the opinion and advice of said friend. A sighted person would be able to go into a shop when their schedule suits and to look and consider what purchases they would like to make on their own.

The internet now provides Paul with the freedom to do all of these things on his own. It provides him with independence and access to the information that he needs.

5. Person-centered care and support planning Care and support plans 38. Does the guidance on personalisation fully support and promote a care and support system that has personalisation at its heart?

39. Does the guidance on personalisation support integration of health and care (and any other state support)?

40. Does the guidance support care and support workers to do their job effectively?

We fully support the Care Support Alliances detailed consultation response on person centered care and support planning, but are submitting the additional comments in relation to blind and partially sighted people.

Accessibility of information and decisions

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It must be made clear that any written explanations of decisions or information on care plans should be made available in a format that a person is able to read. It is not appropriate for a person with a visual impairment who is not able to read print to be given their decision in writing if they are not able to read what has been said.

Personal budgets41. is this definition clear and does it conform to your understanding of intermediate care and reablement? Is there any way it can be improved?

Paragraph 11.6The definition of “reablement”, “rehabilitation” and “intermediate care” is not consistent with that which is used in prevention guidance. There should be an agreement of definition between the two sets of guidance.

Paragraph 11.19We welcome the clarity that if a local authority chooses to combine a package of care to include a program of reablement then, the cost of that service must be removed.

It must be clear that individuals are not charged for reablement and rehabilitation services.

Personal Budget guidance must reflect what is set out in preventing, reducing or delaying needs guidance. Whilst local authorities can charge for intermediate care, including reablement for up to six weeks, prevention guidance 2.48 states that; “Whilst they are both time-limited interventions, neither intermediate care nor reablement should have a strict time limit, since the period of time for which the support is provided should depend on the needs and outcomes of the individual. In some cases, for instance a period of reablement for a person who has recently become sight-impaired, the support may be expected to last longer than six weeks.

The guidance goes on to set out that not charging beyond six weeks can have “clear preventative benefits to the individual and, in many cases, the reduced risk of hospital admission”.

The recommendation that rehabilitation for blind and partially sighted people should not be charged for beyond six weeks and that the service should be delivered to meet the agreed assessed outcomes has come from assurances from the Minister of Care.

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RNIB are currently in discussions with Department of Health to tweak paragraph 2.48 to ‘a person who is sight impaired’ as rehabilitation is appropriate to people at different stages of their sight loss journey.

42. Does excluding the cost of rehabilitation/intermediate care from the personal budget as defined above:- create inconsistencies with the way that reablement/intermediate care is provided in NHS personal health budgets?- Affect the provision of reablement/intermediate care for people with mental health problems?

Whilst we cannot comment on the affect of the provision of reablement for people with mental health problems or on personal health budgets, it must be stressed that guidance must reflect what is set out in regulations – that reablement and rehabilitation services should not be charged for.

The definition should go further to set out that rehabilitation and reablement services should be available for as long as is needed to meet assessed needs, and that rehabilitation services for visually impaired people may take longer than six weeks and it is advised that is not charged for as it saves money in the longer term.

6. Integration and partnership working Integration, co-operation and partnerships

47. Does the draft statutory guidance provide a framework that will support local authorities and their partners to make integration a reality locally?

48. Are there any ways the guidance can better support cooperation locally?

47. Does the draft statutory guidance provide a framework that will support local authorities and their partners to make integration a reality locally?

48. Are there any ways the guidance can better support cooperation locally?

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We support the CSA consultation response on Charging and Financial Assessment and Deferred payment agreements. Particularly in strengthening the role that the voluntary sector can play in the accessing data on certain groups to inform planning, having sector representation present at Health and Wellbeing Board meetings and the delivery of care and support. That guidance must recognise the voluntary sector as partner organisations.

The voluntary sector has a strong role to play in partnership working and often is able to provide valuable information and advice. For example, RNIB have provided a sight loss data tool, which provides key datasets to support local authorities to identify local needs. www.rnib.org.uk/datatool

We welcome that inclusion in the guidance that JSNAs and JWHS are on their own unlikely to be sufficient to fulfil the requirement to promote integration. However, given that JSNA and JHWS are enshrined within Health and Social Care Act, we believe that more can be done to promote their use and to strengthen the requirement of local authorities to work with the voluntary sector and the public when producing them.

All local authorities can develop their JSNA to suit their own commissioning systems and to reflect local need. Whilst it is right that local authorities have this freedom, more should be done to ensure that JSNAs are being produced in a manner which they are able to influence commissioning decisions.

Whilst the demographic of local authorities are different, there are a number of commonalities. For example, all local authorities will have a population of people with visual impairment, and in areas where there is an increasing number of older people, this population will increase. However, from RNIB research published in June 2013, we know that less than 50 per cent of all JSNAs include any reference to sight loss.

The guidance must reflect that local authorities must consider all groups of people who may require care support needs and that this could be done through their JSNA.

RNIB are currently in the process of conducting a scoping exercise on JSNAs, sight loss and commissioning. There is also a lot of knowledge of JSNAs in the sector; we would welcome the opportunity to discuss our findings and experiences with DH.

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Transition to adult care and support

57. Is the guidance clear enough that the term ‘significant benefit’ is about the timing of the assessment? Is the guidance precise enough to ensure that ‘significant benefit’ is not open to misinterpretation and that people who should be assessed are assessed at the right time for them?

58. Are the description in the guidance of people’s rights to transition assessment and continuity of care beyond 18 sufficiently clear?

We support the Care Support Alliance consultation response on this section; however, we would like to make the following observations concerning blind and partially sighted people.

It is important the regulations link to the Children and Families Act, making sure that children and young people have continuity of support and must reflect the final SEND code of practice.

The main areas in the CF Act code of practice which we must be reflected are set out below;

8.56 Support to prepare young people for good health in adulthood should include supporting them to make the transition to adult health services.….This means working with the young person to develop a transition plan, which identifies who will take the lead in co-ordinating care and referrals to other services. The young person should know who is taking the lead and how to contact them.

To adult social care

8.59 Young people with SEN turning 18 or their carers may become eligible for adult care services, regardless of whether they have an EHC plan or whether they have been receiving care services under section 17 of the Children Act 1989. Under the Care Act 2014, the local authority must carry out an adult care transition assessment where there is significant benefit to a young person or their carer in doing so and they are likely to have needs for care or support after turning 18. Transition assessments for adult care must take place at the right time for the individual. There is no set age when young people reach this point and

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as such transition assessments should take place when it is of ‘significant benefit’ to them.

8.60 The statutory guidance ‘Transition Guidance for the Care Act 2014’ explains ‘likely need’ and ‘significant benefit’ in more detail (see References section under Chapter 8 for a link). It also provides further information on local authorities’ roles and responsibilities for carrying out transition assessments for those turning 18 and, where relevant, carers who may be eligible for adult assessments.

Preparing for adulthood

9.184 All reviews taking place from year 9 at the latest and onwards must include a focus on preparing for adulthood, including employment, independent living and participation in society.

Additional comments

Paragraph 16.8

The phrasing here needs further clarification, we agree and welcome the inclusion that an assessment should be timely. However, guidance then goes onto state the assessment should be at a point when the local authority can be reasonably confident about what the person's need for care and support after 18 may be. However, to understand what the needs that a person’s support after 18 may be, the process to start to discuss these needs should start at the earliest opportunity as possible. Starting the assessment early on may help to put in place support which may mitigate future care needs after the age of 18. For example someone planning to leave home may not do so if the appropriate care cannot be provided.

Paragraph 16.11Whilst the guidance is very clear about why timing of the assessment is important and factors to consider, as "significant benefit" is a broad and generic term, this could be interpreted to mean the person's level of need. It would be useful for a more specific timing frame to be used, e.g. is the assessment "timely" or "of beneficial timing". Could also cause confusion with other bits of the guidance e.g. 16.21 when it talks about assessment for carer's being of "significant benefit" - would this be interpreted as the same thing i.e. in relation to timing, when in the case of a carer they are not going through the transition process directly?

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Paragraph 16.15 We welcome the inclusion that a local authority "must" consider requests for transition assessments made by young people themselves.

Paragraph16.34 Many children with mild to moderate sight loss as their sole disability may not have EHC plans. Whilst it is good that the guidance does make reference to the fact not every young person will have an EHC plan, it does make reference to "other plans under children's legislation" - but does not indicate what they might be. EHC plans replace statements but we are concerned that some children with sight loss as a single disability may not have any formal plan. Does this mean they would not receive a transition assessment? Yes they can self refer but the LA does not have to carry out an assessment. This section must be clarified to ensure young people with sight loss can obtain an assessment should they need one.

The section "Completion of the transition assessment" should set out that providing information should be provided in an accessible format.

Paragraph16.65 It is important in ensuring that there is no gap in provision of service when a young person moves from children's to adult services. It is important that both children and adult services should be involved when assessing needs. 9. Other areas

Registers

79. Should certification of CVIs be extended to senior ophthalmologists, or should this continue to be carried out by consultant ophthalmologists as is currently the case?

We would welcome the opening up of senior ophthalmologists completing CVI’s to ensure that people are able to go through the process in a timely manner. However, we would stress that only qualified ophthalmic specialists should be able to complete the CVI process.

Certification of Vision Impairment is critical in the patient pathway because Certification

Really helps patients

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Is not the end of the road and is often the beginning of rehabilitation and continuation of care

Provides vital data for the Public Health indicator for preventable sight loss, this measures incidence of preventable blindness in the nation.

Certification of CVIs should be extended to senior ophthalmologists in order to speed up the process so that patients are referred to social services and third sector more speedily to access advice, support and rehabilitation services. This is ‘prevention’ in action. Earlier referral to rehabilitation support is preventative, as adaptation, acceptance and progression are improved in earlier stages. At end stage of the condition, rehabilitation to teach independence skills is much more difficult because people are frailer and more dependent.

We know from our work with ophthalmologists that there is concern that increase in CVI numbers reflects poorly on performance and that increase in CVI rates are interpreted negatively by non-medical managers/ commissioners. We know there is under-reporting for this reason e.g. analysis of CVI’s in one area with a very large diabetic clinic showed no certifications because of diabetes. The Royal College of Ophthalmologists and RNIB are working together to highlight this issue. We would like to include certification within ophthalmology training. This issue also needs to be tackled by commissioners, recognising that appropriate of Certification of visual impairment is an ophthalmologists duty and failure to offer certification to patient is negligent.We would also like to see all hospital induction programmes for new ophthalmology trainees and fellows to include a mandatory session on CVI processes within that Trust. This is particularly important for those who have trained abroad and have little understanding of the UK process.

We know that there is little time to assess the eyes let alone talk to the patient about support in busy clinics. This is where Sight loss advisers (ECLOs, trained ophthalmic nurses etc) can play a vital role. ECLOs (Eye Care Liaison Officers) can flag up to social services which patients they need to see as a priority.

It is important that services are joined up. An ECLO or equivalent is able to ensure that registration leads to rehabilitation, where appropriate. Delays in rehabilitation arise due to no one being assigned to monitor what happens after thus allowing the patient to ‘fall through the gaps in the system’. Delays can also occur if certification is not offered at all or

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not offered in a timely manner. ECLOs are able to monitor CVIs and raise awareness with patients about the process.

It is not a requirement for a person to be certified to receive support from social services and this must be promoted, though in practice often Certification is the trigger to action.

It is also important to address the issue of the variation in consultant fee for issuing the CVI. New commissioning processes are the appropriate mechanism to bring clarity. Those on the new contract get no fee, those on the old are still paid for each CVI. Our proposal is for a flat rate lower fee payable to all. This will remove confusion

We also have some additional comments regarding the guidance

Paragraph 22.22Those with eligible need for care and support must continue to receive it regardless of whether they consent to inclusion on the register, rather than should.

Paragraph 22.25This paragraph is welcome in setting out when a person can and cannot be registered; however, if the person has given consent he or she must then be registered, rather than ‘may’.

If the consent has not been give, the person must still be offered a needs assessment rather than ‘should’.

Paragraph 22.23We welcome this paragraph and that it clearly sets out that provision should reflect what is set out in preventing, reducing or delaying needs guidance.

Whilst local authorities can charge for intermediate care, including reablement for up to six weeks, prevention guidance 2.48 states that “Whilst they are both time-limited interventions, neither intermediate care nor reablement should have a strict time limit, since the period of time for which the support is provided should depend on the needs and outcomes of the individual. In some cases, for instance a period of reablement for a person who has recently become sight-impaired, the support may be expected to last longer than six weeks.

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The guidance goes on to set out that not charging beyond six weeks can have “clear preventative benefits to the individual and, in many cases, the reduced risk of hospital admission”.

The recommendation that rehabilitation for blind and partially sighted people should not be charged for beyond six weeks and that that the service should be delivered to meet the agreed assessed outcomes has come from assurances from the Minister of Care.

Paragraph 22.29Reference to planning and JSNA, in other guidance sections (i.e. Market shaping and commissioning) states that local authorities should link to JSNAs when planning their services. This paragraph could be strengthened by saying that local authorities should link the information collected JSNAs, rather than ‘may’. It could also go as far as to state that they local authorities should look to include information on sight loss and collected from registers in their JSNA and JHWS.

80. Should we seek the patient’s consent to pass their contact details to RNIB, as well as to the local authority, as part of the CVI process in order for RNIB to offer advice and support?

An idea is for letters to be sent to everyone who has been certified, advising them of relevant national and local organisations and statutory services. This could be sent by a new Certification Information Service, linked to the Certification office based at Moorfields.

We welcome the sight registers section and believe that it sets the correct tone as how the CVI process should be completed. We also welcome the link to the preventative rehabilitation support.

The transition to the new legal framework

81. Are there other consideration around preparation for implementation of the April 2015 elements of the Care Act on which national guidance would be helpful?

82. Are there other considerations around preparation for implementation of the April 2016 elements of the Care Act which national guidance would be helpful?

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Guidance on the implementation of both the April 2015 and 2016 elements of the Care Act would be welcome and the voluntary sector must be involved with the development of any such guidance.

For further information on this consultation response please contact

Tara [email protected] 341 707

Appendix

Action for Blind People Action for Blind People is a national charity with local reach, providing practical help and support to blind and partially sighted people of all ages.

Action speaks louder for nearly 30,000 visually impaired people every year, always placing their needs at the heart of everything we do. We

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support these individuals in many aspects of their lives and help them to find the right services and products they need to live independently.

Diabetes UKDiabetes UK is the leading UK charity that cares for, connects with, and campaigns on behalf of, all people affected by and at risk of diabetes. We help people manage their diabetes effectively by providing information, advice and support. We campaign with people with diabetes and with healthcare professionals to improve the quality of care across the UK's health services. We fund pioneering research into care, cure and prevention for all types of diabetes. We campaign to stem the rising tide of Type 2 diabetes.

Deafblind UK:Deafblind UK is a national charity offering specialist services and human support to deafblind people and those who have progressive sight and hearing loss acquired throughout their lives. Our aim is to enable people living with this unique disability to maintain their independence, quality of life and to reduce the isolation that Deafblindness creates.Further information about Deafblind UK is available on our website:http://www.deafblind.org.uk/

Lincoln &Lindsey Blind SocietyLincoln &Lindsey Blind Society’s aim is to make life easier for blind, partially sighted and visually impaired people whatever their age and personal circumstances, by giving practical help and assistance.

We may not be able to restore someone’s sight, but we can and do improve quality of life in the long term.

RNIBRNIB is the largest organisation of blind and partially sighted people in the UK. We are a membership organisation with over 10,000 members who are blind, partially sighted or the friends and family of people with sight loss. 80 per cent of our Trustees and Assembly Members are blind or partially sighted. We encourage members to be involved in our work and regularly consult with them on government policy and their ideas for change.

As a campaigning organisation of blind and partially sighted people, we fight for the rights of people with sight loss in each of the UK’s countries.

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We also provide expert knowledge to business and the public sector through consultancy on improving the accessibility of the built environment, technology, products and services.

SeeAbilitySeeAbility is the operating name for The Royal School for the Blind, a UK charity which has for over 200 years supported adults who have sight loss and additional disabilities. We provide a wide range of residential, community and specialised therapeutic services which provide each individual with tailored support to develop essential life skills for greater independence and a fulfilling life. We also work to raise awareness of eye care and vision for adults with learning disabilities through access to information, specially adapted sight tests and low vision support. Our Children in Focus Campaign aims to provide children with disabilities sight tests in their specialist school environment.

Sight ServiceSight Service is the premier provider of services and support for visually impaired people in Gateshead and South Tyneside.

Teesside & District Society for the Blind, Is centrally based for the area we support. We cover Middlesbrough, Redcar & Cleveland and Stockton on Tees council areas, supporting people with a sight impairment. We provide a social club, minibus transport, luncheon club, home visiting service, telephone befriending, information and resources, computer training, My Guide, audio and braille transcription, holidays and outings, as well as our newsletter. We hold Macular Support Group meeting the first Wednesday of each month and have two satellite support groups for all eye conditions, one based in Saltburn and the other in Redcar. Our aim is to promote independence in the lives of blind and partially sighted people living in the Teesside area.

Thomas Pocklington Trust Thomas Pocklington Trust is a registered charity for people with sight loss. Pocklington is working with local authorities, clinical commissioning groups, eye health experts, voluntary sector groups and members of the public to develop Vision Strategies across London that use research based evidence around issues of sight loss to inform local policy and practice.

Each year Pocklington funds social and public health research initiatives about the lives of people with sight loss and ways in which Pocklington,

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and others, can improve their lives. Pocklington have developed a particular area of knowledge around the way in which housing supports independence.

END

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