Memorandum submitted by Disability Alliance
1.1 Disability Alliance is a national registered
charity with the principal aim of relieving the poverty and improving
the living standards of disabled people. Our eventual aim is to
break the link between poverty and disability.
1.2 We are a membership organisation with
over 340 members which range from small self-help groups to major
national disability charities. We are controlled by disabled people
who form a majority of our Board of Trustees.
1.3 We provide information on social security
benefits and tax credits to disabled people, their families, carers
and professional advisers; undertake research into the needs of
disabled peoplewith a particular emphasis on income needs,
and promote a wider understanding of the views and circumstances
of all people with disabilities.
1.4 We are best known as the authors of
the Disability Rights Handbook, an annual publication with a print-run
of 30,000, but also have a range of other user-friendly guides
to benefits. We provide an information service and a popular website
and have recently launched a Tribunal Support Unit to assist local
disability and advice agencies with their advocacy work.
1.5 Our policy work is informed by our daily
contact with disabled people and those who provide services for
them. We undertake research into the needs of disabled peoplewith
a particular emphasis on income needs. We have recently completed
a major piece of work, together with the Centre for Research in
Social Policy at Loughborough University, into the extra costs
faced by disabled peopleDisabled people's cost of livingmore
than you would think. Other recent work has covered disabled
parents, families with disabled children and families with more
than one disabled child. In 2003 we published Withdrawing benefit
from sick people a short report highlighting the hardship
caused by the rules under which disability benefits are stopped
for people in hospital. (Although the Government has since extended
the period that benefits such as retirement pension can be paid
while someone is in hospital, disability benefits still stop after
1.6 We welcome the opportunity to submit
evidence to this Inquiry.
2. TRAVEL TO
2.1 There are a range of problems people
have raised with us concerning the current arrangements. Under
the current rules low income households can only get help with
fares if they are attending hospital for treatment, or in the
case of a child, accompanying the child for treatment. Many families
tell us of the financial hardship they encounter because there
is no help available for hospital visiting.
2.2 Families with disabled children who
took part in our survey, published as Helter Skelter,
told of their experiences with hospital visits and medical appointments.
2.3 One of the mothers reported on the problems
she had with hospital appointments when her twins were babies
"It really was such a struggle. I had to get cabs everywhere.
People forget that I didn't just have a Down's syndrome boy I
had another baby as well . . . my whole life was geared around
. . . double feedsand umpteen hospital appointments, and
I had no choice, I had to take M, and A was in hospital with bronchial
pneumonia, asthma . . ."
2.4 Another mother outlines the costs involved
in taking her disabled daughter to Moorfields. "we go by
train . . . if two of us go I the rush hour plus V it works out
at £17 per adult, and if you get an early appointment you
can't get a cheap day return . . . we usually go to McDonalds
or something after the appointment, which is another tenner, so
it's about £50 just to go to Moorfields . . ."
2.5 A further family whose disabled son
was in hospital reported "he's allergic to hospital bedding
so we've had to take bedding in for him. . . . we take everything
home . . . we've got duvet covers and sheets coming home everyday
and we're doing the washing at home". This family had lost
their child's disability benefit because of the length of time
he'd been in hospital and the father had taken unpaid leave from
work. Their financial situation was serious.
2.6 Problems with the costs associated with
hospital visiting was also a key issue to emerge in our survey
of families with more than one disabled child, published as Hard
Working Families in 2005. Families who took part in the survey
reported that "everything costs more with hospital visits",
particularly when the child stays in for a protracted period,
and a parent stays with them. This is now accepted good practice
and is encouraged by the health service. Transport backwards and
forwards to see the children who are at home and parking fees
can be considerable additional costs. There are other issues relating
to extra costs which are beyond the scope of this Inquiry but
which put pressure on familiesfood for the parent staying
with the child, loss of disability benefits (and consequent loss
of carers allowance), care for children left at home.
2.7 Families tell us that hospitals rely
on a parent to help care for a child or disabled adult son/daughter.
We heard from a mother of an adult daughter with severe learning
disabilities who was in hospital for a lengthy period. The mother
had to stay in with her daughter because she could not feed herself
and needed constant care. The hospital had insufficient staff
to provide this. Yet the daughter lost her disability living allowance
after 4 weeks and the mother lost her carers allowance.
2.8 One family with two teenage daughters,
both of whom are severely disabled, and a six year old son with
ADHD and allergic reactions told us of their experiences. The
son is in and out of hospital "sometimes twice a month"
because of his allergic reactions. When the girls are admitted
to hospital they tend to go in for three or four weeks, during
which time their mother stays with them. As her husband is also
disabled when any of the children are in hospital the family has
to pay someone to help out at home and prepare evening meals.
"I have to pay somebody to get a child into a wheelchair,
get them ready for school. Before they get my son ready they have
to catch him first . . . There have been instances when we haven't
been able to provide both morning and evening support" in
these instances the mother has had to rush home from the hospital
to help get the children up and ready for school and then return
to the hospital. Although the hospital is reliant on her to help
care for her son, it "provides nothing". She has to
pay her own fares and provide her own food.
2.9 Another family, living in East London,
whose disabled son was admitted to a hospital in Stanmore (outer
North West London) told us of their difficulties. While her son
was in hospital his mother stayed with him. She had no car so
had to travel by public transport. She had to return home every
two to three days to sort out clothing, food, school uniforms,
washing and ironing for her severely disabled daughter and three
younger children. Her husband had to balance constant visits to
the hospital to bring food with his caring responsibilities at
home. The family did apply to the Social Fund for extra help but
were turned down.
2.10 There can also be extra costs for medical
appointments even when these are for the parent. A, who has two
severely disabled sons, told us of an occasion when she had to
take the boys with her when she had to see the doctor. "They
were both a bit poorly and my car broke down so I had to go by
cab. As soon as we got there the eldest one crapped himself. The
other little one was in the buggy. He was violently sick. The
doctor told me to go home. That was another £8."
3. HOSPITAL CAR
3.1 This is an issue that has been raised
with us by many disabled people and families with disabled children.
It has also been a key issue for cancer patients and is explored
in detail in the recent report from Macmillan Cancer Relief "Free
at the point of delivery". Macmillan's report concentrates
on the problems encountered by patients attending for treatment.
We would fully endorse their findings which echo our own experiences.
However, parents who are having to remain in hospital to care
for or just be with their disabled child report major problems
paying high car parking fees. Yet the car can be necessary to
transport other siblings around, or to bring in food and clothing
or take home bedding. Families particularly resent these costs
because they feel they are providing care which the NHS is not.
Where this is coupled with the loss of disability and carers benefits
the financial hardship is keenly felt.
4. ACCESS TO
4.1 One crucial problem is lack of information
about the low income scheme under which it is possible for people
to get help with fares to attend hospital. People told us how
they discovered about the scheme by talking to other patients
or came across the information almost by accident. There seems
to be little effort put into informing families of the help available
4.2 Disability Alliance is a key source
of information for disabled people, our Disability Rights Handbook
and our website are popular because they bring together information
from a variety of sources. For organisations like ourselves obtaining
information from the Department of Health about prescription charges
and the low income scheme is problematic. The DoH website does
not give information about the position in Northern Ireland, Scotland
or Wales and nor does it refer visitors to primary sources (statute,
regulations, guidance etc). I attach a page from the website as
an example of the issuethe capital limits shown do not
apply in all countries of the UK.
5.1 Some people are exempted from charges
due to their condition (eg diabetes, epilepsy) and the need for
them to take ongoing medication. There are a range of other conditions
that also need ongoing medication which are not included in the
list of exemptions and the logic for this is not clear to people.
5.2 People on income support are automatically
exempt from prescription charges; people in receipt of some other
benefits (such as pension credit guarantee, working tax credit
with a disability element) or who qualify through the low income
scheme can get an exemption certificate. The calculation for the
low income scheme is very complicated and seems out of proportion
to the amounts of money involved. We come across many examples
of people with incomes just above the limit who need several items
and cannot afford to get them all. This particularly affects people
on incapacity benefit.
5.3 It is not cost effective for the Health
Service to invest time and resources in a GP consultation, and
possibly also further tests, and then have the patient failing
to take the prescribed medication because they cannot afford all
6.1 Expand the hospital fares scheme to
cover visiting as well as attending for treatment.
6.2 Review and set limits on car parking
6.3 Extend the period for which disability
living allowance and attendance allowance can be paid while people
are in hospital to bring this into line with the rules for retirement
pension, income support and incapacity benefit.
6.4 Ensure that hospitals are obliged to
provide food and laundry facilities for parents/carers who are
staying in to care for a patient.
6.5 Improve the provision of information
to patients and visitors about benefits and help with fares.
6.6 Provide better central information about
NHS charging schemes across the UK.
6.7 Extend the range of conditions that
qualify people for exemption from prescription charges, following
consultation with the relevant disability and patient organisations.
6.8 Simplify and expand the low income scheme.
15 Helter Skelter, by Gabrielle Preston 2005, Centre
for Analysis of Social Exclusion and Disability Alliance. Back