This page contains information for the Care Act (2014) and the associated regulations and guidance, including the Deafblind Guidance for adults only.
The Care Act (2014) redefined the legal landscape for adult community care, simplifying a previously complex range of legislation into one law with associated regulations and guidance. For deafblind people their legal rights have been both continued and strengthened within the new law. The previous Deafblind Guidance is reissued under the Care Act (2014) for adults, and regulations have further secured prominence for deafblind peoples rights. Navigating through the Care Act from assessment to care and support is a journey, Deafblind UK can help you understand this journey and your rights under the legislation.
The Deafblind Guidance was reissued under the Care Act (2014), maintaining the legislative rights previously won in 2001 following significant campaigning by Deafblind UK and the sensory loss sector. It is worth noting that this guidance also applies for deafblind children as it is jointly issued under the LASSA 1970.
The Deafblind Guidance requires local authorities to:
- identify, make contact with and keep a record of all Deafblind people in their catchment area (including those people who have multiple disabilities including dual sensory impairment);
- ensure that when an assessment is required or requested, it is carried out by a person or team that has specific training, expertise and experience to assess the needs of a Deafblind person – in particular to assess the need for communication, one-to-one human contact, social interaction and emotional wellbeing, support with mobility assistive technology and habilitation/rehabilitation;
- ensure services provided to Deafblind people are appropriate, recognising that they may not necessarily be able to benefit from mainstream services or those services aimed primarily at blind people or deaf people who are able to rely on their other senses;
- ensure that Deafblind people are able to access specifically-trained one-to-one support workers if they are assessed as requiring one;
- Provide information about services in ways which are accessible to Deafblind people; and
- Ensure that one Director-level member of the local authority senior team has overall responsibility for Deafblind services.
The Care Act and deafblind people
The Care Act includes a wide range of rights, and entitlements for deafblind people, and places a number of duties on the local authorities to meet your needs. The areas of the Care Act we will cover are:
– Information and advice duty
– Assessment duty
– The assessment
– Care Planning
– Funding panels
– Assessment v reviews
– Prevention duty
– Market shaping
Information and advice duty
Every local authority is required to establish an information and advice which provides information and advice about care and support for adults and carers covering the needs of all of their local population.
Specifically for deafblind people this includes information in alternative and accessible formats, and face to face information including with an interpreter if required. Where needed due to the nature of deafblindness this would also include not just a translation in your preferred communication method but also an explanation of the information in wider context.
All information provided under this duty and in the local authority exercising any aspect of the Care Act (2014) with a deafblind person must also meet the Accessible Information Standard.
The act requires that where a person meets the definition of a deafblind person, “… their combined sight and hearing impairment causes difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss”, they are entitled to a specialist assessment under the deafblind guidance.
In particular several other rights link to the right to a specialist deafblind assessment:
- a specialist deafblind assessment must be offered to a deafblind person no matter how mild each the individual sensory losses appear. (Care and Support Statutory Guidance).
- an assessment for a deafblind person “ must be carried out by a person who has specific training and expertise relating to individuals who are deafblind.” (Care and Support (Assessment) regulations 2014, 6(1)).
- training should be “a minimum of OCN or QCF level 3, or above where the person has higher or more complex needs” (Care and Support Statutory Guidance, 2016, 6.92).
- in defining the level of specialist training needed to assess a deafblind person “the type and degree of specialism required should be judged on a case by case basis, according to the extent of the person’s condition and their communication needs.” (Care and Support Statutory Guidance, 2016, 6.93)
In providing a specialist deafblind assessment, a team of people may be involved only where a multidisciplinary approach is required, ideally the deafblind specialist trained assessor should leads the multidisciplinary process.
Where an appropriately qualified specialist assessor has completed the assessment, the Act requires that an specialist ideally the same one is involved at several points in a deafblind person’s care journey i.e. assessment, care planning and panels.
The Care Act gives a range of topics which must be included in an assessment of an adult with care and support needs, for a deafblind person the Deafblind Guidance also specifically states it must include:
- Communication needs,
- The need for one-to-one human contact,
- The need for social interaction,
- Emotional wellbeing,
- Support with mobility,
- Assistive technology, and
The Care and Support Statutory Guidance adds to these requirements further by stating the assessment must include all current and future needs especially where there is a risk of future deterioration of the senses (2016, 6.97).
Due to the specialist nature of a deafblind assessment, it is important to recognise that standard assessment forms will not adequately identify information which fits into the assessment topics specified. Assessments completed in such a manner, including self assessments, could be deemed unlawful.
As the assessment process starts from the first point of contact with a local authority, they are statutorily obliged to ensure that all first contact staff i.e in call centre, are trained to identify deafblindness so they can appropriately refer individuals for a specialist assessment. Whilst these staff should be trained it is vital at the point of first contact to ensure in that referral or self-referral that you use the term ‘deafblind’ to explain the combination of your sight and hearing loss.
At the point of making a request for a specialist deafblind assessment to completion of that assessment there is no legal timescale, no set time period is set nationally. The local authority is required to complete an assessment “over an appropriate and reasonable timescale taking into account the urgency of the needs and a consideration of any fluctuation in those needs” (6.29 Care and Assessment Guidance). In practice this means that if when requesting an assessment you inform the local authority of any urgent needs this could mean the assessment process is prioritised, alternatively they may take an option to meet those urgent needs now whilst continuing the assessment process. If urgent needs are met, the assessment can either continue at the normal pace or can be paused to determine the impact of these immediate interventions.
At all times from the initial request for an assessment the local authority should give an estimated timescale for the assessment, and must keep you informed on the progress of your assessment. This should be provided in a format which is accessible and appropriate to your needs.
Supporting your involvement
It is your right to be fully involved in the deafblind assessment process, the assessment must be person centred.
To enable your participation the local authority will need to make reasonable adjustments in;
- Accessible formats must be provided, including if required face to face information.
- Providing information in advance: Some people may not be able to process new information quickly, by providing information in advance you can prepare yourself appropriately. Such information could include the questions the assessor wishes to ask.
- Using interpreters: Where needed to meet your communication needs suitably qualified interpreters are required, and must be booked for your exact communication method. Not all BSL interpreters will be competent in visual frame signing (see section on communication methods). It is not normally appropriate to use a family member as an interpreter, except where no interpreter exists as the deafblind persons communication is idiosyncratic. The assessor can never act as the interpreter even if their language skills meet the needs of the individual being assessed.
Support where a person experiences ‘substantial difficulty’
Some deafblind people will even with reasonable adjustments require additional support to engage with and understand the assessment process. The Care Act refers to this additional support need as experiencing ‘Substantial Difficulty’.
Substantial difficulty is defined as having difficulty understanding relevant information, retaining that information, using or weighing up that information or communicating the individual’s views, wishes or feelings.
How the local authority enables a person with substantial difficulty to engage with the assessment process will vary based on individual need but can include;
- Using an appropriate person. This is someone who is not a professional and paid carer, may be a family member (or advocate), and is only used where the deafblind person consents or their involvement is in the deafblind persons best interests. The appropriate person must also have the skills to support, represent and facilitate the deafblind person’s involvement.
- Using an independent advocate. Where a person’s views are difficult to establish, especially to separate those views from other strong voices around that individual such as family members an independent advocate should be used. This will to differentiate the other potentially opposing influences. The advocate will need access to appropriate interpreters if needed, an ability to provide accessible / alternative information, and an understanding of sensory impairment / loss.
The Care Act allows for an individual to choose to undertake a self assessment, this includes deafblind people. There are complications for deafblind people to complete a self assessment:
- Standard assessment forms don’t cover the specified deafblind topics
- Standard assessment forms may be inaccessible
- Standard assessment forms do not necessarily cover the eligibility outcomes
- Self assessments must still be reviewed by a specialist assessor (suitably qualified to meet the complexity presented by the individual who is deafblind) to be lawful.
Once the needs assessment has been completed and the authority has assured itself that it has established the full extent of the needs, the next step is to assess whether the person meets the eligibility criteria. This should also be carried out by a person with training and expertise in deafblindness to ensure that the impact of those needs on outcomes and well-being is fully understood. Ideally the expert is the person who completed the specialist deafblind assessment.
Care planning duties
An adult with care and support needs must be as involved in the development of their care plan as they wish to be. Some deafblind people may not wish to be heavily involved in their care plan or be unable to have significant involvement, complex processes should not be put in place which delay the development of the plan. Other deafblind people will wish to be completely involved but may need communication support and / or accessible information to be involved.
In care planning a person with training and expertise in deafblindness who understands the impacts of deafblindness must be involved. Ideally the expert is the person who completed the specialist deafblind assessment (Care and Support Statutory Guidance, 10.34). This is to ensures that the person has support from someone who understands the type of support options, including specialist support and technology, which are available to a deafblind person. The involvement of a specialist is not intended to override the deafblind person’s ability to make their own decisions about their care and support.
Some local authorities commission external providers to support care planning, and must ensure that those providers are able to make their support accessible to deafblind people.
“In cases or circumstances where a panel is to be used, and where an expert assessor has been involved in the care and support journey, the same person or another person with similar expertise should be part of the panel to ensure decisions take into account complex or specialist issues.” (Care and Support Statutory Guidance, 10.85) This will mean that a panel considering a care plan for a deafblind person must have at least one member with deafblind training and expertise.
Ideally the expert should be the same assessor who undertook the specialist deafblind assessment.
Assessments vs reviews
Often there is a confusion between does a deafblind individual with care and support needs have a review of their care and needs or an assessment. Reviews are required at least yearly where the person has care and support directly or indirectly funded by the local authority. A review just considers if a support plan still meets the deafblind persons needs, an assessment is required if there has been a change in the persons needs.
In both a review or assessment a deafblind specialist or expert is required to ensure that the impacts of deafblindness are fully considered.
Local authorities have a duty to provide services, facilities and support which can reduce, prevent and delay the development of needs for care and support. Most of the preventative support for deafblind people will fall into what the guidance terms tertiary prevention, i.e. support for those who already have a care and support need but who, with support, can either reduce their need for care and support or prevent it from becoming greater. This might include:
- Mobility training to enable a person to make some regular journeys without a guide meaning their need for a communicator guide was reduced.
- Teaching a person and their spouse to use deafblind manual to communicate meaning they need significantly less support if their spouse is willing to provide support.
- Teaching someone daily living skills such as how to cook for yourself having lost your sight meaning the person is able to continue living independently.
- Ongoing support can prevent severe isolation or challenging behaviour which would lead to higher support needs.
The Care Act (2014) gives local authorities a duty to ensure that there are sufficient high quality services in their area to meet the needs of those with care and support. The guidance on market shaping makes it clear that this must include consideration of the appropriateness of the services.
Services for deafblind people are within the guidance considered as specialist support (non-mainstream) low incidence services. Local authorities should have a published strategy for how they plan to deliver their market shaping and commissioning duties. This should take account of their Joint Strategic Needs Assessment (JSNA) and of the need for preventative services. Local authorities should therefore be consider the likely number of deafblind people within there are and the need for specialist support, including specialist prevention services, such as rehabilitation, accessible befriending and social support.