A Consultation on the future use of resources devolved
following the UK Government’s decision to close the
Independent Living Fund (August-November 2013)
RESPONDENT INFORMATION FORM
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1. Name/Organisation
Organisation Name
PAMIS
Title Mr
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Surname
Taylor
Forename
Julie
2. Postal Address
University of Dundee
15/16 Springfield
Dundee
Postcode DD1 4JE
j.t.taylor@dundee.ac.uk
j.t.taylor@dundee.ac.uk
Phone 01382 385154
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CONSULTATION QUESTIONS
Question 1
What aspects of the current ILF worked well and what elements did not work so well?
PAMIS supports people with profound and multiple learning disabilities (PMLD)
and their families. People with PMLD are amongst the most disadvantaged in
society. They have a range of complex needs, which include; a profound learning
disability as well as a physical disability that seriously affects their ability to
undertake everyday tasks and is likely to limit their mobility. The majority are
therefore life-long wheelchair users. They are also likely to have sensory
impairments with either vision or hearing affected, and in a proportion, limitations
to both senses. Their communication is usually non verbal though some have
limited speech. However, all have the capacity to communicate in a variety of
ways.
Their health conditions are substantial and complex. Areas of particular difficulty
relate to respiration, eating and drinking (dysphagia) and cerebral palsy. Some will
also have challenging behaviour.
Having said that, it is important to emphasise that people with PMLD have the
capacity to enjoy life, to develop and to contribute to the life of others.
In consequence of the above people with PMLD require a high level of support
with respect to all activities of daily living¹. This support may, in some cases,
involve care or healthcare staff that have been trained to administer complex
healthcare tasks, e.g. invasive procedures² and/or they may require 2:1 support.
These support packages are expensive.
In recent years, local authorities providing care packages to people with PMLD
have come under continued pressure to reduce costs. In some local authorities
care packages have been routinely supplemented by using funding from ILF to
fund basic care costs. This was not what the ILF was set up to do! In addition,
there was huge variation between different local authorities on the promotion and
take up of ILF funding. This has created an unequal system determined by your
postcode.
Aspects that worked well
Flexibility of ILF
The ILF fund enabled users and their family carers to have greater choice in their
support arrangements which were not always possible with care packages funded
by local authorities. People awarded an ILF fund were able to:
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go out at weekends and/or evenings
recruit family members
recruit domestic support
portability across local authority boundaries
pay higher hourly rates to attract better trained staff
pay for 2:1 support in day centres so people with PMLD can access
activities


paid directly to the user or guardian
choose activities many of which LA would not fund due to tighter definition
of social care needs and budget constraints.
The threshold of social care funding that the ILF required before you were eligible
for an ILF award acted as a bar to local authorities. It was in the local authorities’
interest to keep a person’s care package at the level that enabled that person to
be able to tap into the ILF fund. Families are particularly worried that with no new
ILF funding that local authorities will reduce the value of a person’s care package
as there is no incentive to reach the bar anymore.
The experience of family carers has been very positive about the ILF organisation.
Families overall felt the ILF staff were conscientious and experienced. Many
families have had the same ILF staff member support them throughout their years
of accessing the fund. This continuity had allowed them to be confident that the
ILF assessor/ reviewer understood the needs of the person they were caring for
and knew their specific needs.
The families were also positive about the ease of process to apply for ILF and did
not find going through another assessment process a problem.
Aspects that didn’t work well
 cessation of payment if user was in hospital for over 28 days
 the abuse by local authorities to use ILF funding to supplement basic care
within a package.
 variations on the use of ILF depending on the local authority
¹ Mansell, J. (2010) Raising our sights: services for adults with profound intellectual
and multiple disabilities. University of Kent: Tizard Centre.
² Hogg, J. (2013) Delivering invasive procedures to people with profound and
multiple learning disabilities: How services succeed. Dundee: University of Dundee
Question 2
Should the money that becomes available after existing ILF recipients no longer
need it be used in the same way for others in the future? If so, why? If not, how else
might the money be used?
Access to ILF has been crucial for families supporting their sons and daughters with
PMLD whether the person is living in the family home or in supported
accommodation. It has become an essential resource that enables people with
PMLD to access leisure, education and cultural activities that basic care packages
do not provide. These basic human rights are essential for the health and
wellbeing of every citizen.
Since the closure of the ILF to new applicants, many people with PMLD leaving
school have received care packages that only cover ‘duty of care’ from their local
authorities with the consequence that their quality of life is severely eroded. This
has coincided with the introduction of Self Directed Support. The ethos and core
values of self-directed support are: independence, freedom, fairness, safety and
respect. For people with PMLD it is difficult to achieve these core values without a
fund such as the ILF as they require such high levels of support. This was
recognised and addressed in the past with the availability of the ILF funding. This
need has not diminished! It is imperative that a new fund be made available to
reduce the inequity between those with ILF and the new generation who have lost
out.
The money that becomes available through attrition should be used to establish
this new fund to address this inequity. This fund would be likely to be smaller and
would therefore achieve the best outcomes by supporting those with the greatest
need. To achieve this, tighter criteria would have to be set, for example the
minimum threshold would have to be raised from the £340/week to a higher
agreed figure.
Question 3
If the available resource is simply that which is transferred from the Treasury, how would
you like to see it used if it was not to be a continuation of the existing approach?
PAMIS would like the resource to be used as a continuation of the existing
approach but with tighter eligibility criteria to reflect the likely reduction in funds.
Question 4
What innovative ways might there be for increasing the overall amount of money in the
pot?
Ideas to increase the new fund include:


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local authorities that have over the average take up rates should add
proportionately to the new fund to remedy the current inequity and great
a more fair and equitable system
recycling of attrition monies
top slicing of local authorities settlements from the Scottish Government
by 0.1% to provide additional money for the new fund.
Question 5
With any available resource, where is the most effective area to target resources which
can have the biggest impact on an individual’s ability to live more independently?
People with PMLD will never be able to live independently, however with the right
level of support they can access the resources available in their communities. This
not only has a positive impact on the person with PMLD but also has a beneficial
effect on the whole family. Caring for a person with PMLD can be very stressful
and is a life-long commitment. The targeting of resources for the most
disadvantaged group in society, will greatly enhance the quality of life not only for
the person with disabilities but also have a huge benefit for their families.
Question 6
Once funding has been devolved to the Scottish Government, which option do you think
will be most appropriate for Scotland?
PAMIS would prefer option 4. – An independent trust with independent trustees
overseeing development and the running of the fund.
We are strongly opposed to local authorities being allocated any funds from the
transferred monies as the money will not be ring fenced for social care. The funds
would most likely be absorbed into the whole local authority budget and lead to
dilution of the funds with little accountability. There is also the real possibility that
the money will be used to supplement basic care packages.
An independent body that has a standard eligibility entitlement across the whole
of Scotland would create a fair and equitable system, and would level out some of
the variations in care packages across local boundaries.
Question 7
To assist with our partial Equality Impact Assessment in relation to the future
development of a sustainable Fund to support disabled people in Scotland to live
independently, please describe any equality issues (in relation to age, disability, sex,
sexual orientation, gender re-assignment, race, religion or belief, pregnancy and
maternity and marriage and civil partnership) that you feel may arise and suggest
ways in which these could be addressed.
People with profound and multiple learning disabilities are already marginalised
within the disability field and especially disadvantaged with their high healthcare
needs. The development of a fund that enables the most disadvantaged to access
the community will provide more equity and create a more equal society.
People with PMLD are found in every part of society within all social classes, race
and religions.
PAMIS – 31/10/2013