Vision Rehabilitation Services: Increasing the Evidence Base

Vision Rehabilitation Services: Increasing the Evidence Base

RNIB Research Day 2014 presentations

Vision Rehabilitation Services: Increasing the Evidence Base

Parvaneh Rabiee, Kate Baxter, Gillian Parker and Sylvia Bernard

Structure of presentation

  • Background and the rationale for the project
  • Aims and methods
  • The key findings
  • Conclusions
  • Implications for policy and practice

Background

  • A rise in the number of people living longer with long-term conditions
  • Sight loss is most prevalent among older people
  • Increasing pressure on health and social care services
  • Preventive and rehabilitation services are a high policy priority for all care settings
  • Reduce the number of people entering the care system
  • Reduce needs for on-going support
  • Growing interest in rehabilitation not a new idea:
  • 1997: The Audit Commission
  • 2000 onwards: Significant investment in intermediate care and reablement services
  • 2010: DH guidance on eligibility criteria for adult social care - endorsed by:
  • UK Vision Strategy Advisory Group 2013
  • Vision 2020 UK 2013
  • ADASS guidance 2013
  • 2013: RNIB - ‘Facing Blindness Alone’ campaign
  • 2014: Recent DH Care Act guidance

The rationale for the project

  • Much of the existing research has focused on low vision services – not clear
  • What community-based rehab services are currently doing to support people with VI
  • What impact they have on people with VI
  • What a model of ‘good practice’ might look like
  • The study funded by Thomas Pocklington Trust is the first step towards a future full evaluation study of vision rehabilitation services

Aims and methods

  • To provide an overview of the evidence base for community-based vision rehab interventions:
  • People aged 18 and over
  • Rehab interventions funded by LAs in England
  • The study involved 4 main research elements:
  • A review of literature
  • Scoping workshops with people with VI and key professionals
  • A national survey
  • Case studies

The literature review

No secure evidence around effectiveness, costs and different models of community-based vision rehab services – however some strong messages for:

  • The potential for vision rehab to have a positive impact on daily activities and depression
  • High prevalence of depression in people with VI and increased need for emotional support
  • Vision rehab interventions mostly target physical/functional rather than social and emotional issues
  • The cost effectiveness of group-based self-management programmes

Who provides vision rehab services?

[Slide contains a bar chart showing two bars: All LAs (152) and Survey respondents (87). Bars show breakdown of:

  • In-house
  • Contracted out
  • Combination
  • Joint health/social care
  • Social enterprise
  • Other
  • None
  • Not known

Most providers are In-house (62 percent on Survey respondents’ bar), followed by Contracted out with 33 per cent.]

How do teams describe themselves?

[Slide contains bar chart showing how teams describe themselves:

  • Specialist sensory impairment
  • Specialist vision impairment
  • Multi-disciplinary/other
  • Generic adult social care
  • Specialist physical and sensory

A breakdown of whether they are In-house or Contractedout is also given for each category. Amongst the Contracted out teams, most describe themselves as Specialist vision impairment. Amongst the In-house teams, most describe themselves as Specialist sensory impairment.]

Background of team managers

[Slide contains a bar chart showing the background of team managers:

  • Generic social worker
  • Specialist in vision impairment
  • Specialist in sensory impairment
  • Occupational therapist
  • Other (not vision specialist)

Each background type is further broken down into In-house or Contracted out. Out of the Contracted out teams, most have managers that are Specialists in vision impairment. Out of the In-house teams, the spread of manager backgrounds is broadly even across the five categories.]

Accessing vision rehabilitation services

  • 60 per centscreened by professional with specialist vision rehab skills
  • 95 per centassessed by professional with specialist vision rehab skills
  • 25 per cent required FACS assessments
  • 66 per cent reported a waiting list
  • Average waiting time 8-10 weeks

Measuring Impact

[Slide contains a bar chart showing if In-house and Contracted out teams:

  • Measure impact
  • Use standard tools

Contracted out teams both measure impact and use standard tools more than In-house teams.]

Costs and caseloads

  • Survey data on budgets poorly reported
  • Annual budgets £13,000 to £800,000
  • Average budget £221,000
  • Annual caseloads 16 to 2000
  • Additional data from three case studies
  • Annual budgets £238,000 to £336,000
  • Annual caseloads 282 to 3322

Case studies

  • Who provides the service
  • A and B: LA in-house
  • C: Contracted out service
  • Team delivering vision rehab
  • A: Sensory Needs
  • B and C: Visual Impairment
  • Manager specialism
  • A: Social Work
  • B and C: Visual Impairment
  • Current waiting time:
  • A: up to 6 months
  • B: up to 2 months
  • C: up to 1 month

Key features of vision rehabilitation services

  • 35-40 per cent of time spent on admin duties – travelling time varied
  • Differences in the way services operated
  • Sites A & B restricted activities to one-to-one intervention - Site C offered a range of group-based activities
  • Only one site (C) measured outcome using an evaluation tool
  • Limited staff training & networking opportunities - more opportunities in site C

Staff views on factors impacting on the benefits of vision rehab support

  • Access to specialist knowledge and skills
  • Concerns about the loss of specialist input within the team
  • Early access to vision rehab interventions
  • Late referrals risk care needs intensifying and clients losing motivation
  • A tendency among health professionals to see vision rehab as the last resort
  • The characteristics of people who use vision rehab services

Experiences of people who use vision rehab services

  • A long gap between diagnosis and referral - in particular those with degenerative conditions
  • Rehab goals tailored around individual needs
  • Support could continue as long as needed - But...
  • Waiting list to get additional training - Site B
  • Time constraints - Site C
  • Progress monitored informally & no follow-up contacts
  • Boosted confidence, improved independence. Increased motivation
  • People felt safer
  • Greatest benefits related to mobility training, independent living skills and supply of aids, adaptation and equipment.
  • Group-based activities offer great opportunities to socialise and learn from peers’ experiences
  • Positive impacts on families

Perceived limitation of vision rehab support for people who use services

  • Information not always forthcoming and timely
  • Concerns about future needs
  • Help often offered when it is too late/when people ‘have to have it’
  • Emotional needs not met effectively
  • Social activities most often geared towards
    older people

Key features of good practice

  • Staff with specialist knowledge and skills
  • High quality assessment
  • Personalised support
  • Offering a wide range of support
  • Flexibility to adapt to users’ abilities
  • Timely intervention
  • Shared vision among all relevant health and social care staff
  • Regular follow-up visits
  • Easy access to information

Conclusion - key messages

  • Potential for vision rehab to have a positive impact on the quality of life for people with VI
  • A wide variation of vision rehab provision – measuring outcomes not a common practice
  • Restricting access on the basis of FACS assessment
  • Negative impacts of financial cuts
  • Lack of recognition of specialist vision rehab skills
  • Group-based activities effective but limited
  • Main focus is on the physical aspects of life

Implications for policy and practice

  • All LAs should follow the recommended practice on FACS eligibility criteria – timely intervention
  • Raising the profile of specialist vision rehabilitation skills
  • Safeguarding specialist assessments
  • Taking account of individual priorities
  • Improved staff training and networking opportunities
  • Greater focus on group-based activities

The Care Act 2014 – Implications for Statutory Visual Impairment ServicesSimon Labbett, Rehabilitation Workers’ Professional Network

Main issues

  • Visual Impairment Rehabilitation mentioned in law for the first time
  • Opportunities to emphasise role of CVI
  • Strong safeguards for Deafblind people
  • Eligibility will remain contentious
  • Understanding how the sightloss pathway is implemented locally will be crucial to developing services

Children and Families Act 2014

  • The core offer – consider implications for local authority sensory provision in widest sense (Habilitation and Rehabilitation)
  • Transition arrangements will overlap with Care Act

Sight Loss Pathway

[Slide shows routes for accessing services within Sight loss pathway. ‘Referral’ leads to ‘Screening assessment’, then to one of three paths:

A: ‘Special assessment’ to ‘Rehabilitation’, then to either ‘No service’ (terminating there) or ‘Social Care Assessment’. From there if you are eligible you will go on to receive a ‘Care package’ or get ‘No service’ if you are not eligible.

B: ‘No service’

C: ‘Social Care Assessment’. If you are not eligible you will get ‘No service’. If you are eligible you will get a ‘Care package’, leading to ‘Rehabilitation’. This leads to another eligibility assessment which could lead to ‘No service’ or ‘Reduced care package’.]

General Areas of Challenge

  • Failure to screening at assessment level (including offering registration)
  • Failure to undertake adequate assessment (including comms. needs)
  • Failure to offer or to provide adequate rehabilitation
  • Failure to plan or anticipate future service needs
  • Failure to provide information and in accessible formats

Issue: people not getting through screening barrierLegal: failure to screen (in a way that anticipates obligations; failure to skill-up staff to recognise need)

  • 6.23 LAs must ensure that every adult with an appearance of care and support needs…receives a proportionate assessment…
  • 22.18 Upon receipt of the CVI, the LA should make contact…within two weeks to arrange inclusion on the LA’s register…Where there is appearance of need for care and support, LAs must arrange an assessment of their needs…
  • (CVI guidance Dept. Health: “purpose of form…if the person is not known to social services as someone with needs arising from their VI, registration also acts as a referral for a social care assessment)
  • 6.20 LAs should not remove people from the process [of screening] too early…LAs must ensure that their staff are sufficiently trained and equipped to make the appropriate judgements needed to steer individuals towards either preventative services or a more detailed care and support assessment.

Implications for entering the system

  • Will Local Authorities need to process CVIs differently?
  • How will Local Authority “call-centre” staff be trained and what will be sufficient? – i.e. skilled to identify

a) the “risks of visual impairment” and

b) what rehabilitation is and if it is an option

Issue: not getting specialist assessment/assessed by specialistLegal: Deafblind people not receiving specialist assessment of needs from an expert

  • 6.77 LAs must ensure that an expert is involved in the assessment of adults who are deafblind.
  • 6.78 During an assessment the appearance of both sensory impairments…must trigger a specialist assessment. This assessment must be carried out by an assessor or team that has specific training and expertise relating to individuals who are deafblind.
  • 6.36 …LAs must provide information about the assessment process in an accessible format [i.e. to vi as well as dual sensory]

Implications for workforce

  • Implies requirement for good screening
  • Requires LA to employ expert assessors
  • Requires LA to devise specialist assessment tool
  • Should encourage LA to keep deafblind register??
  • Requires LA to skill-up assessors
  • Adopt current SENSE guidelines (or will SENSE strengthen them)?
  • Just not enough Deafblind Studies Diploma holders – makes sense to strengthen Rehab. Worker skills to meet this need.

Current SENSE guidelines on skill level

  • Has demonstrable understanding of deafblindness and its implications …..
  • Is currently required to carry out assessments in a specialist role, either working with dual sensory impairment or with people who have a single sensory impairment [ie ROVI]
  • Has thorough knowledge of all legislation and guidance of relevance to deafblind people…. [i.e. social care law not just “section 7”]
  • Can communicate with the deafblind person themselves or with support from an interpreter

Issue: not being offered rehabilitation or early supportLegal: failure to consider and offer any or timely assistance

  • 2.38/6.85 LA must consider whether a person would benefit from… preventative services, facilities or resources.
  • 6.85 …when doing so the LA may decide to pause the assessment to provide reablement…This will mean the determination of eligibility will be similarly paused until after the anticipated outcome of [rehabilitation]
  • 2.19 In developing a local approach to prevention, the LA must take steps to identify and understand both the current and future demand for preventative support and the supply in terms of services, facilities and other resources available

Issue: rehabilitation provision is insufficient/inappropriateLegal: failure to provide a service that meets need

  • 2.8 LAs Must provide or arrange services, resources or facilities that maximise independence for those already with such needs, for example, interventions such as rehabilitation…
  • 2.29 LAs should put in place arrangements to identify and target those individuals who may benefit from particular types of preventative support [particular types = vi rehab.]
  • 22.23 LAs should consider securing specialist qualified rehabilitation and assessment provision...to ensure that the needs of people with sight impairment are correctly identified and their independence maximised………..

more on the nature of rehabilitation services

  • 2.46 The regulations require that intermediate care and reablement provided up to six weeks, and minor aids and adaptations provided up to the value of £1,000 must always be provided free of charge.
  • 2.48…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…LAs should consider continuing to provide it free of charge beyond six weeks…in view of the clear preventative benefits…
  • 22.23…As aspects of rehabilitation for people with sight-impairment are distinct from other forms of reablement, it should not be time prescribed. LAs should also refer to the ADASS position statement of December 2013.
  • 6.78 [deafblindness] …Training and expertise should in particular include: communication, one-to-one human contact, social interaction and wellbeing, support with mobility, assistive technology and rehabilitation.

Implications for rehab. provision

  • It has to be shown to have been considered at assessment
  • The LA has to provide a service (by whatever arrangement)
  • VI rehab. is mentioned in law for the first time and the guidance references the adult sightloss pathway and ADASS’ statement on vi rehabilitation
  • Charging: slightly ambiguous, but strong indicators not to charge for it
  • No charging for equipment up to £1,000?
  • Duration: time limited but not time prescribed
  • Deafblind people: quite specific rehabilitative support identified in the act
  • Workforce planning: LAs need to be demonstrating they recognise future need and how they will meet Unmet need (6.24)
  • (16.52) Children and Families Act – habilitation service within core offer = combined services??

Eligibility

  • However the criteria are defined, it will be contentious and demand on budgets will be huge
  • Meeting eligibility much more likely with deafblind and people with LD
  • Significant influencing factor will be the technical way the assessment is undertaken: what questions are asked; how the questions are asked; how the answers are scored and equate to a budget. Type of questions are not conducive to getting sensory needs support
  • Focus on outcomes is welcome and makes the role of rehabilitation within the eligibility process (6.85) all the more crucial to local authorities and to individuals.
  • The inter-disciplinary implications of the above will be easier for in-house rather and outsourced rehab. Services to achieve?

Conclusions

  • The Care Act offers major opportunities to address early intervention needs of blind, partially sighted and deafblind people
  • The dust is nowhere near settling on the Act, so get in there!
  • Shrewd, knowledgeable campaigning will be required to achieve results

Outcome Measurements in Rehabilitation

Janet Soper – Rehabilitation Officer and Debbie Ross- Business

Development Manager

Aims

  • Background information
  • Overview of service
  • Self directed support planning & outcome measurements/scoring definitions
  • Examples applied to rehabilitation
  • Pros & cons of service provision
  • Statistics

Re-ablement Project/Service

  • Commissioned by Hampshire County Council in 2011
  • Project ran from February 2012 – March 2014
  • Service commenced April 2014
  • Current service provision in partnership with deafPlus (South), Open Sight and Sense for 3 years

Overview of re-ablement service

  • Hampshire County Council adult sensory services staff assess individuals with sensory impairments and prepare a re-ablement plan for those who meet the current eligibility criteria.
  • The support plan outlines the outcomes to be achieved.
  • Partnership provides re-ablement services to achieve these outcomes.
  • The service now receives referrals through support plans completed by sensory and Deaf services staff across Hampshire.

Support planning

  • I would like to manage the day to day running of my home
  • I would like my personal care done in a way that suits me
  • I would like to find new, or maintain the relationships I have
  • I would like to take part in activities in my local area
  • I would like to learn new things or get a job
  • I would like to feel safe at home and have the right support/equipment to stay safe
  • I would like support so that I do not hurt myself or others
  • I would like to have enough to eat and drink
  • I would like help to make decisions when I need it
  • I would like support when I need it

Outcome measurements

Scoring definitions 1-5
  • 1 = Dependent-needs task completed by someone else
  • 2 = Needs physical assistance to complete the task (eg food prep, using LVAs, hearing aids)
  • 3 = Needs supervision (inc prompting) to complete task (eg food prep, using LVAs hearing aids)
  • 4 = Needs only equipment to complete task (eg liquid level indicator, Bellman’s pager)
  • 5 = Independent – No support needed

Examples of support plans

Mobility
  • Outcome: That I am able to take part in activities in my local area:Difficulty being able to access the local community safely -To advise and offer mobility skills and long cane technique: 10 sessions
Living skills
  • Outcome: That I feel safe at home and have the right support/equipment to stay safe:Difficulty using the cooker hob and oven – To demonstrate and train in safe techniques using the cooker, mark cooker controls, train in safe techniques for making hot drinks: 4 sessions

Further examples

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