Debate on whether parents with learning difficulties are given enough support

We asked whether you think people with learning
difficulties are given enough support to help them become
parents.

These are the responses we received:

“Parents with learning difficulties can and do
raise families very successfully. Appropriate support, however, as
noted, may be required, sometimes at specific times, such as a new
baby or when a number of children, sometimes with their own
difficulties, place stress on the family – and this is not
confined to parents with learning disabilities!  

I am currently monitoring and evaluating a project set up by the
Ann Craft Trust and Home-Start Nottingham, and funded by the home
office for a period of three years, to offer volunteer support to
families, where the parent or parents have learning
difficulties. Over the last year, 10 families have been referred to
the project by social workers and health visitors and five (soon to
be six) families are currently being supported by volunteer
parents. 

The volunteers received the usual thorough ‘home-start’
preparation, but in addition had a training day run by Sue McGaw,
well-known in the field for her work with parents with learning
disabilities, a further two half-days from the Ann Craft Trust and
four days training by Advocacy in Action who, amongst many other
things, presented the final and vital element concerning the need
to listen to what parents with learning disabilities really
want.

In addition, the project has a local advisory group of concerned
and knowledgeable professionals who have, from the start, followed
its progress from training to the preparation of special referral
forms and the monitoring of the home visiting. The referral forms
included forms the parents themselves completed (with help from the
‘home-start’ co-ordinator), and based on these responses, a
flexible plan was compiled for each family to offer the volunteer
and the family ways forward.     

Each volunteer begins with getting to know the family and
earning their trust. They visit the families at least once a week
and offer both practical and emotional support. Practically, this
might be to do with the health of a child and the need to keep
clinic or hospital appointments; supporting the family at meetings
with school, social services or health care professionals;
financial problems; obtaining safety equipment, filling in benefit
forms; accessing disability entitlements and helping with the
shopping.  

But overall is the need to listen to what the parents say and to
give families confidence in their own abilities. To quote from one
recent social services review report:  ‘During previous
reviews there have been discussions regarding ‘E’s need to
develop more confidence in her own abilities and strengths and to
develop independence in terms of activities and friends outside of
the children and her husband. With the support of home-start
workers she has done so and now presents as happier and more
confident in her own abilities and strengths. This has clearly been
positive not only for E in her own right, but also for the family
as a unit.

The families are currently attending parenting days with their
children at a play centre in Nottingham, and some of the mothers
have also attended the home-start drop-in which is held each week. 
At other times the volunteers have, at least to begin with,
accompanied them to local groups. 

All of this is of great importance, but it is also sad to
reflect how many of these families are targeted by neighbours to
the extent that they do not like to go out alone in the
evenings. They have been miscalled in the street, have had their
windows broken and at school their children are often bullied.  The
other side of the coin is that they are taken advantage of and end
up doing all sorts of things for their neighbours, including
babysitting.  So, in addition to the difficulties they may face in
keeping their families together, they have the added burden of
‘lack of care in the community.’“

Pam Cooke
Research Consultant
Ann Craft Trust

“Parents, mostly mothers, have said:

– They are often unable to express, or articulate, or relay
events that have happened at a speed for people to understand,
hear, and respond to. They feel intimidated, embarrassed, and
ashamed that events have got to where they have
– They talk about the troubles they had in their lives, what they
have tried to do to rectify them. They say that they cannot cope on
their own. Often their personal relationships with their partners
were not good.
– They say they have been bullied, raped, beaten, by their partners
but do not want to be alone. They say in their way that having a
partner gives them access to being a real person, being a mother,
holds status. This makes them feel included. People talk to you not
at you, include you, and speak to you respectfully. “I am the
mother of…..  My partner works he has friends, we get to know
people like us”
Quote from a mother:

“I don’t understand luv, I’m not a bad mum I
love all my kids I wouldn’t want to hurt them. I know things
went a bit wrong, but I did go to them for help each time.
I’m not a bad mum you know, not like people who take drugs,
or drink, or hit their kids. Why can’t I keep my kids they
want to be with me? I don’t have a boyfriend now, he wont
bother me any more I just want my children. I suppose I’ll
get down now, I miss them, and worry that they are alright. I worry
about who is caring for them.”

 Recommendations:

– Improve recognition of learning disabilities as a disability.
Too often parents dismissed as ‘feckless’ or
‘uncooperative’ when they do not understand what is
required or how to go about it.

– A lead person on inter-departmental working to facilitate
parents specifically with learning disabilities

– Clear protocols, and practical arrangement at all levels for
when a case first comes to light

– Statistics kept on parents with learning disabilities.

– Better recording and reviewing child care cases where one or
both parents have a learning disability to reflect their
disabilities (and the profile of the children and their needs)

– Parents questionnaire survey specific to learning
disability

– The monitoring of skills and abilities of workers who observe
and assess parents abilities in the home situation regarding
learning disability. Opportunities for the mother /father to
respond systematically to what has been said at the time

– The monitoring of skills and abilities in learning disability
of keyworkers who attend contact sessions Again opportunities for
parents to respond to comment formally

– Recording of the efficiency of agencies brought in by SSD who
ultimately support parents i.e. reliability, attitude, and
punctuality.

– Flexible ways to helping parents learn new skills that are
relevant to where they live.

– Development of creative support systems for help in the home,
maybe continued development of schemes like Home Start / shared
care etc
– A key element would be the relationship between the parent and
the worker. Support that is consistent, as opposed to irregular,
inconsistent, and provided by a number of agencies 

– Proactive work i.e. respite for parents before crisis, planned
and ongoing, adjusting as the children become older.

– Immediate support for parents where issues first arise, i.e.
advocate, also the involvement of a solicitor

– Holistic assessments carried out by a skilled worker –
which would on-going working assessment as children and situations
change. Taking into consideration debt, homelessness, domestic
violence, and the exclusion this brings.”

Extract from paper by Dorothy Neville – Advocacy
Co-ordinator, Community Partners, an advocacy organisation in
Surrey.

“As I had the privilege of working with a small
group of parents with learning difficulties when I was a social
worker in a community team for people with learning difficulties in
East Surrey during 1999/2000. 

As part of an MA in Disability Studies, which I was taking at
Leeds University at that time, I did research with the parents,
developing a small pilot group for them, as they had felt alienated
by other parents’ groups they had tried to attend in the area, and
wrote up my findings for my MA dissertation.  My experience was
that given the right networks, support, respect and encouragement,
they were able to succeed as well as any other parent does!  We
must listen to them to really understand what they need – which is
often the kind of networks and support which most of us take for
granted in our own lives.
 
Janet Iles
social worker