RNIB Cymru response to Health and Social Care Committee scrutiny of the Care and Support (Eligibility) (Wales) Regulations 2015

29 May 2015

1. About RNIB Cymru

1.1. RNIB Cymru is Wales’ largest sight loss charity. We provide support, advice and information to people living with sight loss across Wales, as well as campaigning for improvements to services and raising awareness of the issues facing blind and partially sighted people. We welcome the opportunity to provide evidence to the Health and Social Care Committee on the eligibility regulations.

2. About sight loss

2.1. There are currently 106,000 people in Wales living with sight loss (1). It is estimated that the number of people living with sight loss in Wales will double by 2050 (2).

2.2. The prevalence of sight loss increases with age: one in five people aged 75 and over are living with sight loss; one in two people aged 90 and over are living with sight loss (3).Older people with sight loss, particularly those over the age of 75, are often living with up to three or more long term health conditions, making it even more of a challenge to maintain independence, social networks and wellbeing. Many need care and support (4).

2.3 Children and young people with sight loss may also need support from social services. At least 20 per cent of young people with a visual impairment have additional disabilities or special educational needs and a further 30 per cent have very complex needs (5).

2.4. Sight loss impacts on every aspect of a person’s life: their physical and mental health, their ability to live independently, their ability to find or keep a job, their family and social life. As a result, people with sight loss form a significant group of users accessing social care services in Wales.

3. Eligibility regulations

3.1. Will the Regulations and Code of Practice as drafted achieve the desired aims of the Act?

3.1.1. Whether the Regulations and Code of Practice as drafted will achieve the desired aims of the Act cannot be assessed in isolation, or without reference to other regulations and guidance under the Act. In particular, critical to achieving the desired aims will be:

· The ability of information and advice services to provide an appropriate response to the enquiries they receive and refer individuals on for assessment or to other services effectively;

· The availability of a range of preventative services in the community and support to enable individuals to access these services;

· The skills of assessors to make an informed assessment of the needs of someone with sight loss, including access to specialist assessments from someone such as a Rehabilitation Officer for the Visually Impaired.

3.1.2. RNIB Cymru are also seriously concerned that proposals to charge for preventative services which are currently being consulted on could counteract the positive vision set out by the Act. Charging for preventative services may reduce the number of people using them. This in turn could then lead to an increase in the number of people developing eligible needs, resulting in higher costs for local authorities to support higher levels of need and increased costs for health services.

3.2. Are the Regulations and Code of Practice as drafted appropriate to ensure the right access to care and support for people who require it in Wales?

3.2.1. RNIB Cymru have previously expressed concerns about what will happen when someone is assessed as having needs that could be met by accessing services in the community, and what support there would be to enable people to access these services. We therefore welcome paragraph 2.24 of the Code of Practice, which states: “Even where a determination of eligibility is made there remains a duty on the local authority to support people to access any appropriate community based services where these contribute to meeting the person’s wellbeing outcomes”. It is vital that people are both informed about and enabled to access the community based services available, rather than simply being told that they are not eligible for support from the local authority.

3.2.2. Rehabilitation/habilitation support for people with sight loss clearly fits the definition of preventative services provided by the Act. However it has not been specified by the Act or in any secondary legislation drafted to date whether specialist habilitation and rehabilitation for people with sight loss will, or should, be provided as a community-based preventative service, or as a service provided by a local authority that would require an assessment of eligibility to access support. We assume that this will therefore be a decision for local authorities to make, on the basis of their population needs assessment, and could result in differing service structures in different local authority areas. RNIB Cymru are concerned that this will result in inconsistent experiences for blind and partially sighted people across Wales, and be confusing for people who are trying to access support.

3.2.3. Currently, rehabilitation/habilitation services are provided throughout Wales by qualified Rehabilitation Officer for the Visually Impaired (ROVI’s). The support provided by ROVI’s enables people with sight loss to be more independent – for example, by learning new skills to assist with daily activities (such as cooking and cleaning), and specialist mobility training. It can also include emotional support to come to terms with sight loss, provision of aids and adaptations and the development of new communication skills. By promoting independence, this support can reduce the need for ongoing and long-term care and support from social services and assist people with sight loss to learn new strategies and techniques to maximise their independence. To achieve the positive vision set out by the Social Services and Well-being (Wales) Act for blind and partially sighted people it is vital that access to rehabilitation and habilitation is safeguarded under the Act and associated Codes of Practice and regulations.

3.2.4. The case scenario given at Annex 3 of the draft Code of Practice is therefore helpful in clarifying what someone with sight loss needing access to support from rehabilitation services might expect – that is, if Mr Davies was not able to access support for him to cope with his sight loss from a rehabilitation officer via a service made available in the community, the expectation is that his needs would become eligible for care and support from the local authority.

3.2.5. However, RNIB Cymru remains concerned that this does not ensure equal access to rehabilitation throughout Wales for people with sight loss. This is because while local authorities have a general duty to plan for and provide preventative services, there is no individual right or entitlement to these sorts of services – whereas there would be for someone found eligible for care and support. There would also be different consequences in terms of the charges for accessing such services, if they are provided within the community, as opposed to after an assessment of eligibility. This is confusing for individuals, and a potential area for disputes. We would welcome further guidance from Welsh Government about their expectations as to which services will require an assessment for eligibility, and which would be provided in the community.

3.3. Do the Regulations and Code of Practice as drafted sufficiently address any concerns previously raised?

3.3.1 There are a number of amendments made to the draft regulations following consultation that RNIB Cymru had previously expressed concerns about. We therefore welcome:

· The removal of the definition of “specified outcomes” from the regulations, which we felt would be confusing;

· The introduction of regulation 6, to clarify that a person will be regarded as unable to do something even when they can, but only with a greater level of difficulty than would normally be expected.

3.3.2. RNIB Cymru were part of the technical working group to inform the development of the eligibility regulations. Via this group, and in our consultation response, we repeatedly expressed our concerns that the proposed eligibility regulations failed to take into account consideration of barriers to information and communication needs. People with little or no sight are at major disadvantage in relation to accessing information and communicating independently. Many are unable to read standard printed information and this can be a barrier to maintaining their wellbeing. For example, they will often require labelling systems in their own homes, to ensure that they do not mistake cat food for baked beans, or need ongoing assistance to read correspondence. We therefore welcome the change made to the eligibility criteria following public consultation, to include the ability to communicate in regulations 3, 4 and 5. However we would recommend that this is reworded to say “ability to communicate or access information”.

3.3.3.RNIB Cymru are concerned that the definition of self-care still fails to take into account assistance needed with taking medication and managing medical conditions. People with little or no sight are often unable to detect a change in their appearance or symptoms which might be the early signs of a health problem. Some will need blister packs for medication, or assistance to manage their medication, eg to administer insulin injections. RNIB Cymru have heard from blind and partially sighted people who have accidentally taken the wrong dose. It is vital that this area is added to the definition of self-care to ensure that any risks are minimised, so that blind and partially sighted people who need support with these tasks are found eligible for assistance.

3.3.4 RNIB Cymru had previously expressed concerns that regulation 7 of the consultation draft regulations was confusing. However, we share Wales Carers Alliance’s concerns that clauses 3(c)(ii), 4(c)(ii), 5(c)(ii) of the revised regulations refer to “others who are willing to provide that care” and that this is taken into account when considering whether a need is eligible or not. This does not provide sufficiently clear direction on the relationship between eligibility and the willingness and availability of a carer to provide care and support.

3.3.5. We would also reiterate concerns expressed by the Social Care and Wellbeing Alliance that the can and can only test suggests that ‘need’ will be based on which services are available not on the person’s needs. The test must meet the person’s needs and well-being outcomes. A community service that is only relevant in part will not meet specific needs in the way a more personalised care and support plan would.

4. Further information

For further information, please contact Tess Saunders, Policy and Campaigns Officer.

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References

1. Estimate based on Access Economics 2009, Future Sight Loss UK 1: The economic impact of partial sight and blindness in the UK adult population, RNIB, and Office of National Statistics (2014), Subnational Population Projections, Office of National Statistics.

2. Access Economics 2009, Future Sight Loss UK 1: The economic impact of partial sight and blindness in the UK Adult Population.

3. Access Economics, 2009, Future Sight Loss UK 1: The economic impact of partial sight and blindness in the UK Adult Population

4. Tate R, Smeeth L, Evans, J, Fletcher A, Owen C, Rudnicka A, 2005. The Prevalence of Visual Impairment in the UK: a review of the literature. RNIB.

5. Keil, S (2012). RNIB survey of VI services in England and Wales 2012. RNIB.