They deserve better

September 3, 2004 in Adults, Disability, Family support

Jenny Morris is an independent research consultant who
has studied a wide range of disability issues. She was recently
special adviser to the joint scrutiny committee on the draft
Disability Discrimination Bill, and is currently working on the
prime minister’s strategy unit project on improving the life
chances of disabled people.

When Saadia Nielson, a disabled woman and mother of two,
enquired about direct payments, she was told: “You don’t qualify
for direct payments because you live with your husband”. Another
disabled woman pregnant with her first child approached social
services for help with equipment, only to be told: “We can’t do an
assessment until after your baby is born.”

Both these statements clearly go against the women’s entitlements
under community care legislation. But they also effectively
highlight how confused social workers often are about how to
respond to disabled parents.

The National Centre for Disabled Parents has been funded by the
Joseph Rowntree Foundation to distribute an information booklet for
disabled parents. Called They Said What? it takes some of the
inaccurate things parents have been told by social care
professionals and sets out what their rights are (see further
information in panel right).

While the title and the cartoons of the publication may present the
issue in a humorous way, the consequences of such inaccuracies can
be very serious. Disabled parents often find that they are passed
from adults’ to children’s services when trying to get help in
their parenting role. This can lead to them being denied the
support they are entitled to. To add insult to injury, some parents
then find that they cannot obtain help from children’s services
until things have gone badly wrong.

This was a key issue identified by the Joseph Rowntree Foundation’s
task force on disabled parents that reported last year. It looked
at whether disabled parents can access the assistance they need
without their parenting capabilities being called into question, or
their children being considered at risk. In other words, can
assistance with parenting tasks be accessed through disabled
people’s entitlements under community care legislation? Or is
assistance only available through the Children Act 1989?

Unfortunately, the latter is often the case. Several parents
reported that they were not offered an assessment of their own
support needs, and that social services only became involved when
the family had reached crisis point.

The task force also heard some disturbing stories of parents
struggling without practical support. In these circumstances,
children are at risk of taking on inappropriate caring tasks and
can become labelled as young carers. One parent told the task
force: “As the condition progresses, I can do less and less and
I’ve ended up having to rely on my son to do things for me. I wish
I didn’t but social services don’t seem to have anything to offer
except a young carer’s group for my son.”

The task force heard that parents with learning difficulties are
particularly at risk of their children being taken into care. But
there is also evidence of parents with physical or sensory
impairments and those with mental health problems losing their
children into care. In some situations, children have been removed
from their families without an assessment of any sort being offered
to parents in terms of their own support needs under community care
legislation. The acting chief inspector of social services drew
attention last December to continuing evidence that disabled
parents are often not effectively supported.¹
Disabled parents need more information about their entitlements.
The task force heard of several occasions when social workers told
parents: “Because you have a child, we’ll have to refer you to
children’s services.” In fact, if someone is disabled they are
entitled to an assessment of their needs for community care
services and government guidance says that such an assessment
should include “family roles and responsibilities”. The guidance,
Fair Access to Care Services, goes on to say: “In the
course of assessing an individual’s needs, councils should
recognise that adults who have parenting responsibilities for a
child under 18 years may require help with these
responsibilities.”² Even if children’s services do
become involved, parents should still be offered an assessment
under community care legislation.

In other cases, parents have been told that they can only receive
help with personal care and not help with looking after their
children. This is not true either. The government clarified, in
practice guidance which took the form of questions and answers,
that community care assessments must cover the assistance that
someone needs to carry out “family and other social roles and
responsibilities” and that “family responsibilities” include
“parenting roles and responsibilities”.³

It would help disabled parents if adults’ and children’s services
were clear about their respective responsibilities as well as when
they need to work together. In response to a recommendation from
the task force, community care minister Stephen Ladyman last autumn
committed the Social Care Institute for Excellence to drawing up a
national protocol. This would lay down good practice for community
care and children’s services to work together. Already, some local
authorities, such as Essex Council, have drawn up such a protocol
and the Association of Directors of Social Services is encouraging
others to take similar action.

Most importantly, disabled parents and those working with them need
to know that the assistance they require should be available from
adult community care services.

Abstract

This article draws attention to the difficulties disabled
parents often have in obtaining their entitlements under community
care legislation. A failure to meet needs relating to impairment
and disabling barriers can mean that parents lack the practical
support required to carry out parenting tasks. Some parents cannot
get help until their family is in crisis and this can result in
their ability to look after their children being questioned.

References

¹ Letter from Acting Chief
Inspector of Social Services to Directors of Social Services,
Independence Matters: an Overview of the Performance of Social
Care Services for Physically and Sensory Disabled People, 15
December 2003

² Department of Health,
Fair Access to Care Services Policy Guidance, Paragraph 9,
2002

³ Department of Health,
Fair Access to Care Services: Practice Guidance, updated
March 2003

Further information

Disability Pregnancy and Parenthood International provides
advice and information to parents and professionals: Tel 0800 018
4730, or go to www.dppi.org.uk
Disabled Parents Network is a nationwide network of disabled
parents. Helpline: 0870 241 0450; or go to www.disabledparentsnetwork.org.uk
J Morris, The Right Support: Supporting Disabled Adults in
their Parenting Role, Joseph Rowntree Foundation, 2003
J Morris, They Said What? Some Common Myths About Disabled
Parents and Community Care Legislation, 2004 (available free
from National Centre for Disabled Parents 020 7263 3088)