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Equipped for Inclusion: Report of the Strategy Forum: Equipment
and Adaptations
Chapter 1
Setting the scene
1.1 Joint future and beyond
In its report 'Community Care: A Joint Future' [November 2000] the Joint Future
Group acknowledged the very positive and significant impact that equipment and
adaptations can have on people's lives in helping them to stay at home for longer,
and in reducing demand for high level and crisis intervention. They recognised
the need to move from marginalised and fragmented service arrangements to modern,
effective equipment and adaptation services that are fully integrated with the
rest of community care services.
The changes that are taking place in response to the recommendations of the
Joint Future Group represent significant first steps towards modern and efficient,
person centred equipment and adaptation services. Changes that will deliver
tangible improvements in service delivery for the people using community based
care services. This largely structural change will not however in itself deliver
radical cultural or societal changes in the way we respond to the effects of
illness, disability, and ageing.
Although much can be achieved through the Joint Future agenda, the modernisation
and improvement of equipment and adaptation services needs a strategy of its
own. The Strategy Forum was established to review existing services and how
they interact, and to develop a programme of change. Its remit was to:
- establish the strategic direction
- identify core information requirements and minimum service standards for
information, advice and demonstration, for service users and assessors
- advise on the self selection of equipment and adaptations
- suggest areas for research on the effectiveness of equipment and adaptations,
and rehabilitation services
The approach that the Strategy Forum took to their work is outlined at Appendix
2. They began by establishing an overview of the issues.
1.2 Scope
The span of the agenda extends beyond social work service equipment and [temporary]
adaptations for daily living, and health nursing equipment. It includes health
provision of environmental control systems, wheelchairs, and other mobility
equipment, communication equipment, building adaptation and design across all
tenures, voluntary sector provision, and the rapidly developing technology arena.
The range of equipment and adaptations covered by this report does not however
include anything that is invasive to the body, or that is used for medical
treatment.
1.3 Terminology
For the purposes of this report reference to 'equipment' and 'adaptation' has
been used to reflect the language used by the Joint Future Group, and that used
within the general population. However consideration of the language that best
captures this agenda for the future is required. Appendix 1 details some of
the deliberations that took place.
Question 1: should reference to 'equipment
and adaptations' continue, or should the phrase be replaced with a more encompassing
and modern expression? If so, what should this be?
1.4 Who meets need
The responsibility for funding, planning and provision of community care, and
therefore equipment and adaptation services is a shared one [Community Care:
A Joint Future, November 2000], and is much wider than those services associated
with local authority social work and housing services. People often require
a combination of equipment and adaptations, and current boundaries of organisational
and service responsibility are unhelpful to people who use them.
Responsibility rests with statutory agencies and the independent, voluntary
and private sectors, and a range of professionals working within these agencies
and organisations. This can include physiotherapists, speech and language therapists,
occupational therapists, nurses, clinical engineers, technical officers [sensory
disability], architects, surveyors, engineers, housing professionals, and a
range of support staff.
Organisational responsibilities for equipment and adaptation provision are
detailed within legislation and guidance. There are specific areas of overlap
and duplication, and where funding is limited gaps appear or widen as areas
of organisational responsibility are debated, while new and emerging technologies
cut across traditional organisational boundaries of responsibility. The companion
document to this report: 'Using the law to develop and improve equipment
and adaptation provision' provides a comprehensive picture.
Some equipment and adaptations are available from local centres, some from
regional or national centres. Some are integrated and others are discrete. Some
are low volume-high cost; others are high volume-low cost. This mixed economy
of provision and shared responsibility can only be effective within a strong
framework for, and commitment to, joint working. Throughout Scotland there are
many examples of good practice, however access to equipment and adaptations
remains fragmented, unpredictable and variable in quality.
1.4 Awareness
There is a lack of awareness of the range of equipment and adaptations available
and the potential effectiveness - not only by people who could use them and
their carers, but also people who assess and provide and those involved in the
wider health, social care and housing services.
The lack of awareness in the general population of what is available and what
can be achieved undermines the huge potential for people to lead more autonomous
and inclusive lives. In addition to this, sources of information about equipment
and adaptations, costs, assistance, funding and charges vary across Scotland,
and routes to assistance may be unhelpful and complicated.
1.5 Resources
People may wish to finance their own solutions, they may wish to contribute
towards statutory provision to achieve a better outcome, or they may seek assistance
with the total cost of the equipment and adaptations they require.
The legislative and funding framework for health, housing and community care
that has developed over the past forty years, has led to current financial arrangements
that are complex and fragmented, and involve a number of government departments,
each using a number of funding routes, channelled through a variety of organisations.
With some local interpretation of funding responsibility contrary to national
guidance.
There is no easily discernible information on the resources for the provision
of equipment and adaptations. Some useful indicators are detailed at appendix
4. Where activity is detectable, it is recorded in different ways in different
service areas and in different organisations:
- between 1988 and 1998 there was a 91% increase in the number of social work
cases where equipment for daily living was issued [50,110 to 95,790], and
a 15% rise in cases where adaptations to property were made [21,418 to 24,635].
[SWS Forms M1 97-98 Scottish Executive statistical return - no longer issued].
- 25-40% of all referrals to social work services were for occupational therapists
delivering equipment and adaptation services [Summary report of the Joint
Strategy Group on Local Authority Occupational Therapy Services 1997]. In
1999-2000 around £17 million was recorded as having been spent, but there
were no figures available for recycling activity. More than one study has
shown that over 70% of this provision was for people over the age of 65 years.
- between 1996/7 and 2000/01 housing capital programme data suggest a 25%
increase in permanent adaptations carried out by local authority housing services
[those that are the responsibility of the housing provider]. In the same period
Scottish Homes [now Communities Scotland] expenditure on permanent adaptations
for housing associations rose by 148%, amounting to £2,342,304.21.
- Glasgow City Housing has estimated that adaptations to the value of at least
£200,000 are removed each year due to the inability to find a suitable tenant.
- in 2000/01 Home Improvement Grant to a value of £9,220,562 was awarded on
3,620 properties. A further £161,005 was awarded on 77 properties to landlords
and tenants in the public rented, private or housing association sector.
- the growing cost of adaptations reflects both increasing numbers of requests
[largely due to demographic changes] and the increasing costs of individual
adaptations [partly due to advances in technology, partly to rising building
costs]. For homeowners the maximum Home Improvement Grant capacity limit [i.e.
the 'eligible expense'] is being increased from £12,600 to £20,000 to reflect
this, but for the first time will be linked to a test of resources.
- environmental control equipment does not appear to have a very high profile
in Scotland, and in some areas is rarely used, or known about. Responsibility
was devolved to health boards in 1979, and has shown little change, or has
subsequently become impossible to identify [1997/8 SCOTReT survey].
- there is no easily discernible information for community nursing and walking
equipment as, in addition to Scottish Healthcare Supplies [SHS] contracts,
NHS Boards and Trusts purchase directly from the manufacturer.
- it is not possible to identify how much the voluntary sector spends on equipment
and adaptations, or to quantify how much private individuals spend.
Research undertaken for the Care Development Group indicated that the provision
of equipment and adaptations is one of the most significant unmet needs among
older people. In October 2000 an additional £100 million was announced to support
older people at home, including £5 million specifically for the provision of
equipment and adaptations.
1.6 The market
Where people wish to fund equipment and adaptations for themselves, equipment
can be purchased directly from some pharmacists and by mail order from a range
of private companies who specialise in equipment for disabled people, while
adaptations to the home can be organised directly with a contractor.
The market is however dominated by the statutory sector including the National
Health Service [NHS], private hospitals, residential and nursing homes, local
authorities, clinics and general medical services, medical centres, schools
for disabled children, hospices, charities and voluntary organisations.
There are relatively few large companies among the principal suppliers, as
manufacturing activity is characterised by a large number of relatively small
specialist companies.
Most of the technical changes associated with primary equipment used by the
health care services are refinements on existing products. However, advances
in technical knowledge are being applied more quickly to new equipment for sight,
hearing and speech, and mobility. More radical advances in innovation and performance,
including those made possible through advances in technology, are introduced
slowly because of market uncertainties and the dominance of the statutory sector
in the purchasing arena.
1.7 Social and economic impact
If a person cannot get into or out of their home, or if their home environment
is so unsympathetic that it takes them all of their time and energy to do basic
daily living tasks, this can significantly impact on their ability to access
and do well in education, and employment. Labour force statistics show that
50% of disabled people of working age are not economically active. This is a
waste of human potential, and a personal tragedy for the individuals who are
excluded and marginalised.
The Centre for Independent Living in Glasgow [CILiG] developed an employment
and training project for disabled people to help people with medium to high
levels of impairment, and in its first pilot year achieved a 70% success rate.
It is estimated that over the next two years a positive contribution in excess
of £576,000 will be made through reductions in benefit payments and increasing
employment related taxes paid by the disabled workers involved in an extension
of the project.
The number of people disabled from birth, as a result of accidents and from
illnesses which develop during life, is expected to stabilise because of advances
in medical science with expectations of a longer life being feasible for the
majority of the population. However, the general population is ageing and a
high proportion will become impaired and unable to perform daily tasks unaided.
1.8 Delay and uncertainty
Provision can be highly unpredictable. There may be long delays for assessment,
and for subsequent service delivery. There is variation in the number of people
waiting and the length of time they have to wait, both between and within localities
and organisations.
The Audit Commission report 'Home Alone: the role of housing in community care'
[2000] detailed the cost of delay:
"In one authority a door widening adaptation took seven months and cost
£300.00. The occupant required 4.5 additional home care hours per week while
waiting for the work to be done. The cost of additional home care over this
period was £1,440.00 [32 weeks x 4.5 hours @ £10.00 per hour].
In a second authority, the installation of a stair lift took 18 months and
cost £2,700. The applicant required five additional home care hours per week
while waiting for the work to be completed, at a total cost of £3,850 [77 weeks
x 5 hours @ £10.00 per hour]".
Where equipment and adaptations require co-ordination by social work, health
and housing, poor liaison and gaps between different organisational and professional
areas of responsibility make this difficult to achieve in practice.
1.9 Guidance
Guidance includes indicative lists of equipment and adaptations and while not
considered exhaustive, it is often referred to at times of dispute over responsibility
for funding. Although guidance seeks to clarify responsibility, areas of debate
persist. Some of these demarcations were made almost forty years ago, during
which time life span and life style have changed considerably. People now expect
to live at home and where necessary be supported by the most up to date equipment
and technology.
For example, mobile hoists were not in common use until moving and handling
legislation and guidance came in to effect. When resources are stretched there
can be debates over where responsibility lies: with the nursing service for
the patient, with the home care service for its employees, or with the person
using the hoist as an employer of personal assistants funded through Direct
Payments.
The interpretation of legislation, regulations and guidance relating to the
provision and/or use of equipment and adaptations is complex. Concerns in relation
to liability and potential litigation can result in a 'can’t do’ rather
than a ‘can do' attitude by organisations and professionals with a role
in equipment and adaptation services. The companion report 'Using the law
to develop and improve equipment and adaptation provision' explores this
in detail.
1.10 Comprehensive approach
The wide-ranging impact of investment in equipment and adaptations across the
health and social care spectrum is not always considered, including:
- the impact on the person from the ability to live a more autonomous or independent
life
- the costs and savings to one service area are not always balanced with the
implications for another
- the impact of early investment on the longer term
- perverse incentives, particularly in the welfare benefit system, that discourage
a reduction in dependency
Services are characterised by a lack of strategic planning. Across health and
social care other national strategic priorities have often resulted in limited
capacity for a focus on the planning of equipment and adaptation provision.
Responsibility often sits in a range of planning processes further limiting
opportunities for a strategic approach and joint redesign of existing provision.
There are a number of consequences:
- equipment and adaptation services are not always integrated within the broader
structures, systems and procedures in either social or health care. As such
the funding for equipment and adaptations depends on particular organisational
and departmental systems. Consequently there are variations in commissioning
arrangements across Scotland, and services may be commissioned to match budget
rather than need.
- there are variations too in eligibility criteria for services, differences
in decision-making, differences in respect of delegated funding, and differences
in charging policies. Budgets for equipment and adaptations are continually
and increasingly under pressure. Assessors will not necessarily be responsible
for provision.
- existing resources are not used in the best possible way; for example there
has been limited tracking and recycling of items. Insufficient time and effort
are put into research, leading to limited evidence gathering, innovation and
subsequent commercial investment. Planned review and maintenance is rare.
- there is a poor record of involving people who use services in designing
and developing provision, and there is little use of Direct Payments.
- there is an overall lack of joint and shared training of the wide range
of professionals involved.
1.11 People to influence and lead change
The process of ongoing change that we seek to influence and achieve is considerable,
and will require enduring effort to sustain. A key task will be to encourage
and support the development of innovative new products and design options. The
technology agenda in particular is developing rapidly, but it is important to
remember the merit of simplicity and to support innovation in all areas.
To achieve this a partnership between people who use equipment and adaptations,
people who provide assistance across health, housing, social care and the voluntary
sector, the designers, manufacturers, suppliers and those in the construction
industry and commerce more generally is required.
Recommendation 1: to influence, lead
and sustain change, encourage innovation, and support implementation of the
strategy through a tasked agenda, the Scottish Executive should establish a
national forum, the 'Implementation Steering Group: Equipment and Adaptations'.
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