Parents
Together: action research and advocacy support for parents with
learning difficulties
Reproduced
by permission of the Editor of Health and Social Care in the
Community, 7(6), 1999, 464-474. Click here
for a downloadable PDF version courtesy of Blackwell Science
Publications.
Tim Booth BA
PhD
Department of Sociological Studies, University of Sheffield
Wendy Booth BA
Department of Sociological Studies, University of Sheffield
Abstract
This paper describes
the work of Parents Together ,a pioneering action research project
which set out to support parents with learning difficulties in
ways that were non-stigmatising, non-intrusive and responsive
to their perceptions of their own needs. Based on an explicit
model of parenting and social support, Parents Together used
an advocacy approach to challenge discriminatory views of parents'
competence and to lighten the load on families by reducing the
environmental pressures that undermined them. The paper concludes
by drawing out the wider lessons of the project for policy and
practice.
Introduction
The number of parents
with learning difficulties is unknown, though the numbers who
are known to the health and welfare services are widely acknowledged
to be rising steadily (Gillberg & Geijer-Karlsson, 1983;
Hoffman, Mandeville, Webster, Heighway, Ullmer, Mincberg, et
al., 1990; McGaw, 1997; Ray, Rubenstein, & Russo, 1994; Whitman
& Accardo, 1993). The reasons for this trend are complex
and it is not easy to tell if more referrals really mean there
are more parents. On the one hand, policies that reduce controls
over the sexuality of people with learning difficulties might
be expected to lead to more of them having children. The fact
that increases in the number of parents have been reported in
all countries which have moved towards services based on 'ordinary
life' principles and community living would appear to support
this interpretation (Danish Ministry of Social Affairs, 1996).
On the other hand, families on the margins of competence might
be finding it harder to manage in an increasingly competitive
society. Greater intervention by the state in family life, closer
surveillance of parents and their children and the widening of
the child protection net (Thorpe, 1995) may have brought more
parents to the attention of the public services.
Whatever the reasons
for the apparent increase in families headed by a parent or parents
with learning difficulties, they now represent a sizeable population
whose special needs for education, training and support have
so far not been adequately addressed by the health and social
services (Booth & Booth, 1996b). Research has shown that
parents too often receive a raw deal from the statutory services:
the evidence points to high rates (40-60%) for the removal of
children from the family home but low investment in the kind
of services and supports that might enable them to bring up their
children. A number of features of much professional work with
parents serve to exacerbate their vulnerability:
- The presumption
of incompetence
- parents frequently experience discriminatory treatment as a
result of the misplaced belief that their innate limitations
make them unfitted for parenthood (Booth & Booth, 1993a;
Booth & Booth, 1994b).
- Conflicting
responsibilities
- there is a constant tension between the 'policing' and 'enabling'
role of social workers. As Harris (1990) observes, families in
difficulty 'typically turn to the very professionals who have
the main statutory responsibility for child protection.'
- A deficiency
perspective
- practitioners tend to focus on people's deficits, and on what
they cannot do, so reinforcing their feelings of inadequacy and
undermining their confidence (Booth & Booth, 1993b).
- Competence-inhibiting
support
- parents are often deskilled by services which take over their
responsibilities and put the practitioner in control (Booth &
Booth, 1993c).
- Blaming the
victim -
family and child care problems are too often ascribed to the
limitations of the parents when they owe more to environmental
pressures or to deficiencies in the support services (Booth &
Booth, 1996a).
- Lack of trust - many parents have had
bad experiences of the services in the past and are often reluctant
to seek or accept help, even when needed, for fear of where it
might lead (Whitman, Graves, & Accardo, 1989).
This paper provides
an account of an action research project, funded by the Joseph
Rowntree Foundation, that sought to avoid these pitfalls by working
in partnership with parents in ways that gave priority to their
own views of their needs (see Booth and Booth ,1998).
Parents Together
Parents Together was set up as an independent
network to provide advocacy support for people with learning
difficulties who were mums or dads, expectant parents or thinking
about having a baby. It was open to couples where one or both
partners had learning difficulties, single parents with learning
difficulties, parents who had had children taken into care, parents
with dependent children, and parents whose children had left
home.
The driving aims
of the project were to:
- enable parents
by creating opportunities for them to exhibit their competence;
- empower parents
by improving their sense of control over their own lives;
- enhance parents'
self-esteem; and
- extend parents'
social networks.
The end-goal was
to make parents feel better about themselves and better able
to look after their children.
Parents Together adopted a principled approach
to working in partnership with parents drawing on the precedents
and examples set by:
- The self-advocacy
movement
- especially the idea of people working together to find their
own voice, speak up for themselves, challenge the identity they
have been assigned and fight for their rights as full citizens
(Williams & Shoultz, 1991).
- The citizen
advocacy movement
- especially the idea of actively representing the interests
of people with learning difficulties (in this case, parents)
and helping them establish informal supports within their neighbourhoods
(Butler, Carr, & Sullivan, 1988).
- The self-help
movement
- especially the idea of people joining together to do something
about their common problems and to enhance their sense of personal
identity (Kurtz, 1997; Mullender & Ward, 1991).
- The supported
parenting model in the USA
- especially the idea that parents should be regarded as a resource
(warranting support and investment) rather than a problem (Mandeville,
1992).
Parents' involvement
in the project was voluntary. All information received or shared
was regarded as confidential (following the example of the Samaritans).
All workers on the project had to be parents themselves (following
the example of Home-Start and Parentline groups).
A Model of Support
Over the past decade,
new initiatives in helping parents parent have begun to receive
attention. Most of these are North American in origin, and most
are designed as intervention programmes providing parenting training
(see (Tymchuk & Feldman, 1991) for a recent review; also
Craft, (1993) and Ullmer, Kidd-Webster and McManus (1991)). Parents
Together was based on a different approach. For most parents
with learning difficulties, family life is constantly under threat
(Booth & Booth, 1994c; Whitman & Accardo, 1990). Poverty,
debt, unemployment, chronic housing problems, fraught relationships,
the hardships of single parenthood, poor literacy and numeracy
skills, personal harassment and victimisation all contribute
to their vulnerability and add considerably to the risks of parenting
breakdown. For this reason, as the experience of Project CAPABLE
in Cincinnati has demonstrated, work with these families 'needs
to begin with the problem of social support' (Espe-Sherwindt
& Kerlin, 1990). Unlike most intervention programmes so far,
which have targeted the developmental needs of children born
to parents with learning difficulties, Parents Together
aimed at reducing the pressures on parents rather than developing
parenting skills.
Parents Together was grounded on an explicit
model of parenting and social support (see Diagram 1) derived
from original work by Tucker and Johnson (1989) adapted to take
account of our own earlier research (Booth & Booth, 1994c).
In this model, parental competence is influenced by the
environmental pressures bearing on the family and the
social support the family receives.
Environmental
pressures
exert both a direct effect on the parenting load and hence the
parents' ability to cope, and an indirect effect by influencing
how well they are seen to be coping and hence the type and level
of support they need.
Diagram
1
Social support impacts on parental competence
for better or worse depending on whether it promotes or inhibits
the parents' capacity to manage the parental task.
The parents' actual
level of competence in turn feeds back to reinforce how they
are perceived by the support system.
Drawing on this
model, Parents Together set out to enhance parental competence
in three ways:
- By reducing the
environmental pressures on parents that undermine their ability
to cope.
- o By challenging
discriminatory views of their fitness for parenthood, their ability
to learn and acquire new skills or their capacity for love and
affection.
- o By supporting
parents in ways that improve their confidence and encourage a
sense of self-worth.
The Action Project
As an action project,
Parents Together operated on two fronts :
- Running support
groups -
bringing together parents in order to share their experiences;
to learn from and support each other; to reduce isolation and
loneliness; to combat stress; to encourage strengths and abilities;
and to enhance self-esteem.
- Outreach work - developing the trust
of parents new to the project; getting to know the parents better;
maintaining contact with parents unable to attend the support
groups; helping to mobilise community supports; accompanying
parents to appointments with social workers, housing officials,
schools, solicitors etc.; offering personal support, mostly in
parents' homes.
Other activities
providing a bridge between these two parts of the project included:
- Crisis advocacy - for parents and families
facing immediate problems that threaten to overwhelm them.
- A telephone
helpline
- for people wanting a worker to call, to cancel a visit, to
off-load, a bit of advice or just to chat.
- Parent-to-parent
links -
bringing together parents for friendship or mutual support.
- A resource network - offering information
and guidance on sources of practical help.
Who Was Involved
Initially, most
parents were contacted through the health and social services.
When the project was up and running, however, other means of
getting in touch opened up and the names of families were put
forward by, for example, solicitors and voluntary organisations.
Some parents were brought along by those already in the project.
Parents Together did not take referrals from practitioners.
We were happy for them to put us in touch with people who might
like to join but membership was voluntary and only for parents
who wanted to take part. In other words, joining the project
was a decision for parents, not for practitioners as referral
agents.
Twenty five families
were involved in Parents Together between February 1996
and July 1997. These 25 families included 23 mothers with learning
difficulties; 3 fathers with learning difficulties; 2 (single)
mothers without learning difficulties; and 10 fathers without
learning difficulties. The two mothers without learning difficulties
were introduced by other parents to the support groups. They
shared the same problems of isolation, powerlessness and vulnerability
as the other parents. They did not receive outreach support.
Among the 25 families,
there were 6 married couples; 7 cohabiting partnerships; 7 single
mothers; 4 divorced/separated mothers; and 1 mother who was living
with two men.
Nineteen families
in the project had between them 35 children living at home. These
children ranged in age from 0 to 24 years: 29 were under eleven.
A mother and 5 couples had no children at home with them. During
the course of the project, 2 more babies were born, three mothers
became pregnant, and 1 child was taken into care.
In addition, 18
children from these families had been fostered or adopted; 3
(now adult) children were living independently; 6 children were
living with an ex-partner; and 2 children had died.
The project team
employed on Parents Together was made up of 4 workers:
one full-time (woman) with five years experience as an Adviser
to a People First self-advocacy group, one half-time (woman)
with experience of supporting low income families, and two people
who were employed one day a week (a man whose own mother had
learning difficulties and a woman with experience of teaching
adults with learning difficulties).
Contact with Parents
Conveying something
of the extent of involvement with families is not easy. Contact
with some families was greater than with others. People's needs
shaped the frequency of their contact with their advocate. The
length of home visits varied. The work done on behalf of families
cannot be measured by the time spent with them.
Crudely, then, the
blunt figures on the frequency of communication between the families
and project workers are:
- 653 contact meetings
(including visits and support group sessions).
- 212 phone calls
to parents from advocates.
- 193 phone calls
to advocates from parents.
- 14 letters to parents.
- 1 letter from a
parent.
Being responsive
to parents' views of their own needs meant some made greater
use of Parents Together than others. For example, one
mother was visited 61 times, attended the support group 58 times
and rang her advocate 48 times. By contrast, another mother,
who was in the project for a similar length of time, was visited
just 22 times, attended the support group once and phoned her
advocate once (as she was on the phone, her advocate was able
to ring her (39 times) to keep in contact).
Advocacy in Action
Parents Together was conceived and carried
out as a piece of action research. Lewin (1946), who is generally
credited with introducing the term, described action research
as a way of generating knowledge about a social system while,
at the same time, trying to change it. In this process, the generation
and analysis of data are fundamentally linked with action for
change: there is 'a blurring of lines between "finding out
more" and "doing something about" the issue or
situation selected for investigation.' (Hart & Bond, 1995)
Evaluation provides the loop through which fact-finding and practical
problem-solving are bound together.
We adopted Beattie's
(1991) 'portfolio' approach to evaluation (see also Hart and
Bond, 1995) which, in this case, involved systematic programme
monitoring, the maintenance of a project diary and activity log,
formative assessments of work in progress, and post-hoc interviews
with parents and their practitioners. Continuous and detailed
recording of all encounters, actions and outcomes - of who, what,
where, when, why, how and to what effect - was maintained throughout
the term of the project. This article draws on the evidence contained
in these extensive records.
Examination of the
portfolio of evaluation data highlights the many different ways
in which Parents Together worked to support families.
At one time or another, often simultaneously, the advocates acted
as:
- a witness to the
actions of officials and practitioners in their dealings with
parents;
- a buffer absorbing
some of the pressures on families by fielding or deflecting matters
that might exacerbate their troubles;
- a voice making
sure the parents' views were heard;
- a go-between helping
to facilitate and improve liaison between families, practitioners
and the services;
- an interpreter
putting information into language that parents could understand;
- a listener enabling
parents to share their worries, air their grievances or just
talk things over;
- a scribe helping
with letters and form-filling;
- a problem-solver
helping parents to think things through, supporting them in their
decisions, and ensuring that practitioners were alerted to options
for helping families they may have missed;
- a fixer sorting
out problems of service delivery caused by poor co-ordination,
errors, oversights and bureaucratic inertia;
- a conduit channelling
the lessons learnt in supporting one family for the benefit of
another;
- a sounding-board
encouraging families to have confidence in their own ability
to cope by helping them to work things out for themselves;
- a confidante with
whom confidential information could be safely shared;
- an ally unambiguously
on the family's side, prepared to stand by them, and whose actions
were always consistent with this stance;
- a sleuth tracking
down and searching out information that would help parents achieve
positive objectives;
- a mentor sharing
knowledge and experience of life in the capacity of a supportive
equal rather than an expert;
- an observer looking
out for the early signs of stress, or changes in personal circumstances,
that might impact on the parents' capacity to cope;
- a mover and shaker
making things happen.
Parents' perspectives
on their advocate
All but one of the
families in at the end of the project who had received one-to-one
advocacy support agreed to talk to someone from the project other
than their own advocate (and with whom they had had no dealings)
about what it had meant to them.
These parents overwhelmingly
endorsed the practice principles followed by Parents Together:
they liked the advocates' ways of working; they liked knowing
that nothing was being done behind their back; they liked having
copies of everything that was written about them; they liked
having easy contact with their advocate; and they liked being
listened to and treated with respect. Patricia summed up these
feelings when she said:
'I was very happy
with the way she helped me. She was someone to talk to and she
was great with Michael. I'd rather have her than a social worker.
She was good. I could have a laugh with her, she didn't criticise
me. She respected things we told her. I liked the confidentiality
if we said anything about social workers. I think single parents
would benefit from having someone like her. She was great.'
Parents valued the
roles played by the advocates ('She's done more than what anyone
else has done.'). All of them reported feeling better for having
an advocate ('It was good to have someone on my side.'), and
all of them would have liked their advocate to have continued
beyond the end of the project ('I would like Anne to continue,
and kids would.'). Maureen and Ruby echoed the sentiments of
the other parents when they spoke as follows about their advocate:
'She was great
with me. She helped me more than a social worker and was more
useful than a social worker. It was good to talk to someone.
I'm still waiting for a house and I would have liked her to have
been here to help with that. She helped me more than anyone.
We got on great with her and had some laughs. She was someone
to talk to. She was company during the day. It was good to have
help; it was good what she did. I would have liked her to have
continued coming to see me and helping me. I wish she was still
coming.' (Maureen)
'She explains
to me what I don't understand, what Social Services are talking
about. If I didn't understand what questions were she'd repeat
it and explain it. She was brilliant. Helped me with debts. Had
problems with money - still have problems. Calming me down when
I get stressed. Any problems I tell her and she tries to help
me. Trying to help us get kids back. She went to Court with me
and Review meetings. That's why I want her back. Social worker's
a cow. If I'm in bad distress I tell her and she tells me who
to get in touch with. I've never had anyone better, not like
her before.' (Ruby)
These quotations
reflect the overwhelmingly positive comments of parents (see
Booth and Booth (1998) for a fuller account of what they had
to say about the project). The only criticisms voiced by parents
(2) were about advocates' level of involvement. One mother felt
that her advocate 'got too involved in certain things' where
another 'would have liked to have her around a bit more'.
Practitioners'
perspectives on advocacy
Practitioners were
invited to give their views on what impact, if any, the advocate's
work had had on their clients, their own practice and on their
agency. Some families in the project had no close involvement
with a practitioner and there was no-one to ask. Comments were
obtained by postal questionnaire from eight people who had been
closely involved with parents in a professional capacity throughout
the project.
All these practitioners
felt their clients had benefited from having an advocate and
all of them cited ways they too had benefited from the advocate's
work. Most said that working alongside an advocate had prompted
them to examine their own practice, though some had found aspects
of the advocate's work unhelpful. Nearly all thought that a permanent
advocacy scheme should be established. The following quotations
are typical of the comments made by practitioners:
'Excellent facility
which needs to be on-going. The advocate's work was supportive
and practical help given. The clients found the work done invaluable.
They have begun to do some things for themselves. I would see
the need for a permanent advocacy service to be offered to all
clients with learning disabilities.' (Social Worker)
'The advocate
dealt with areas which I would have found difficult having not
had the necessary experience and allowed me to concentrate on
other areas of need in the client's life. I felt that my client
was getting help from the most relevant people. (The advocate's
presence also) made me try to make sure that I carried out work
promptly before I was reminded that something had not been done.'
(Community Nurse)
'Initially, my
clients having an advocate took some getting used to, feeling
as if my work was being scrutinised. However I actually found
this useful, enabling me to reflect on practise. Throughout,
I felt this to be beneficial to the clients concerned. It helped
me enormously too. Giving clients support in areas that often
I had little time to give to enabled me to work more effectively
in relevant areas. Therefore meeting needs across a wider spectrum
for the client. I felt they gained in confidence and learned
a lot via role modelling. I felt they learned to have expectations
of services, where previously they appeared to accept whatever
was offered - appropriate or not. There needs to be long term
commitment to projects like this.' (Community Nurse)
'I felt generally
positive about my client having an advocate, though some concerns.
At first, I felt there was a very anti-professional stance and
assumptions being made. This dissipated over time. The advocate's
involvement proved positive when there, negative when it stopped.
I have found contact with the project and its workers positive
- hope it is groundwork on which to build more partnership to
pursue support and empowerment of parents with learning difficulties.'
(Psychologist)
The practitioners
owed no loyalty to the project. Their generally positive appraisal
suggests they appreciated its value to the parents even when
(as advocacy should) it made their work more difficult.
The Support Groups
Two separate advocacy
support groups were run as part of the Parents Together
project:
City Group met 61 times (for two and
a half hours each session) in a city centre venue over a period
of eighteen months. During this time, 9 mothers, 3 fathers and
3 children attended meetings, of whom 5 mothers and 1 child turned
up almost every week.
District Group met 18 times (for one and
a half hours each session) in a local branch library, with adjacent
crèche facilities, over a period of five months. During
this time, 4 mothers with 10 children attended meetings of whom
all but one mother and two children came regularly.
Parents from 13
of the 25 families involved in Parents Together came to
group meetings at some time. The others did not attend for a
variety of reasons:
- because the meetings
clashed with other commitments
- because they would
have needed help with using buses
- because they were
frightened of travelling alone
- because they lacked
the confidence to attend
- because they were
not interested.
Two workers generally
attended every meeting. It was agreed from the start that they
would adhere to an advocacy role in supporting the self-help
aims of the groups. Particular importance was attached to three
points:
- The role of the
advocate as facilitator was to assist and support the groups
but not to lead or take responsibility for the meetings. This
did not mean standing on the edge of the group. It meant joining
in and sharing without taking over.
- The parents owned
the groups. After the first meeting, they decided who could join.
No-one was invited without their consent.
- The agenda for
the meetings should be decided (or left undecided ) by the parents.
None of the parents
had attended a support group before, nor any other sort of group
in which they were in charge. During the course of the first
few meetings, they decided on some basic ground rules about how
the groups would operate:
- They agreed when
to meet, how often and for how long.
- People could come
and go whenever they wanted.
- What people said
was private and must not be told to outsiders.
- Children under
school age could attend with their parents.
- The groups were
open to all parents (no mention was made in this context about
the groups being for parents with learning difficulties).
- Everyone present
should help set up the meeting and tidy up afterwards.
- A different person
would lead the meeting each week.
What the Groups
Did
Process
The parents were
adamant from the beginning (contrary to the expectations and
intentions of the workers) that they did not want outside speakers
or any experts coming along to talk or join in group meetings.
Their position was that if they wanted to know something, 'We'd
do better to find out for ourselves and bring it back to the
group'. Also the idea of sitting and listening did not appeal.
They much preferred to do the talking themselves.
The workers, with
the parents' permission, kept a record of what was said, what
happened and what was decided at meetings. Initially, this was
done for research purposes (as part of the monitoring of the
action project). But as time went on it became an integral part
of the workings of the group:
- People liked seeing
what they had said being written down. They would often check
that the worker had noted it all or say, 'Have you got that down?'
People seemed to gain confidence from feeling they had made a
contribution.
- Latecomers could
be brought up to date with what had gone on in the meeting using
the parents' own language.
- It was useful as
a reminder of where the group had got to in the previous meeting
and what had been left over to do at the next.
- It was a way of
continually re-affirming the parents' ownership of the group
by demonstrating that the proceedings were driven by what they
said.
- It served as a
tangible sign that there was no hidden agenda concerning the
business of the group.
Keeping the groups
together and going meant keeping everybody involved and interested.
Attention had to be given to group maintenance as much as to
task performance. This was especially important whenever new
parents joined a group. Relationships had to change to include
them.
The groups had to
handle some strong emotions. Painful feelings (anger, frustration,
jealousy and grief among others) were generated within the groups
and brought into the groups. These had to be dealt with in different
ways. The initial response to problems in relationships between
members was to leave them to sort things out among themselves.
Observing and learning how to resolve such conflicts in a safe
setting was a positive aspect of the work of the groups and contributed
to greater self-awareness and assertiveness among members. If,
however, these conflicts continued to the point where they upset
others or threatened to split the group the worker would have
to step in to calm matters - always without taking sides. Painful
feelings brought into the group were almost always caused by
problems in family relationships or by system abuse. These feelings
worked to bring the group together, mainly because others had
invariably experienced them too. Sharing them with the group
created opportunities for showing mutual support, and helped
to free people from the sense of being alone in a hostile world.
Activities
Group sessions were
not pre-planned or designed with any purpose in mind other than
to bring the parents together. From the outset, the aim was that
the groups should be a resource for their members, and the parents
would decide how they wanted to use them. Topics and tasks were
carried over from one week to the next and, as the range of activities
the groups were involved in grew, so the agenda of upcoming meetings
filled with things to do and decisions to make. Nevertheless,
there is no sense in which the groups could be said to have followed
a structured programme beyond the routine that emerged as they
went along. Looking back, however, it is possible to see that
group activities clustered under a number of headings.
The Weekly Newsround
At the start of each session, everyone, including the workers,
talked in turn about things that had happened to them during
the past week or since their last meeting, or raised some matter
that was troubling them or had made them feel good or which they
thought the group would be interested in hearing about. The newsround
was very popular. Initially used as an 'ice-breaker' when the
groups first formed and people didn't know each other, it soon
became a fixture on the weekly agenda. Everyone made a point
of always contributing. Some people wrote down their news so
they didn't forget anything, and two even bought diaries for
the purpose. Others got involved in things they might not otherwise
have done in order to ensure they had something to report. The
newsround served a number of purposes:
- It ensured everyone
who attended meetings had their own slot on the agenda, a chance
to speak, and to have people listen to them.
- It allowed people
to get to know each other better, and to appreciate what they
had in common.
- It gave everyone
a stake in the group.
- It helped to identify
issues of common concern.
- It provided an
anchor for meetings and gave them a sense of cosy familiarity.
Discussion Slots
Discussions usually took place spontaneously in response to parents'
news, or questions, worries and concerns that emerged during
the course of the meetings. A list of the topics raised by parents
and discussed within the groups over the course of the project
was kept in the project activity log and is shown below.
abuse
being pushed around
benefits
birthdays/treats and special occasions
child removal
children
confidentiality within the group
conflicts with neighbours
contraception/pregnancy and birth
cooking
death and bereavement
disability
education and enrolling at college
family and home
fines/debts/money/finances
harassment/victimisation/burglary/crime
health - personal and children's
holidays and trips
house decorating
housing matters
informal support
jobs and job opportunities
leisure interests
loneliness
making new friends
male friends
men who abuse
moving house - setting up home
new clothes
New Year's resolutions
people from other countries
pets/animals and plants
relationships
religion
safety and self protection
service provision and shortfalls
travel and mobility
unemployment
This list is instructive
because it reflects the parents' priorities and their sense of
who they are:
- It is not just
about being a parent or bringing up children.
- It does not encompass
the kind of concerns that usually feature in training programmes
for parents with learning difficulties which are usually child-focused
and skill-based.
- It shows the problems
that figure prominently in their lives, and the things that interest
them as parents, are probably the same as most families in need
and do not stem from their learning difficulties alone.
- The focus is on
their place in the world, not on their limitations. What they
looked for was help with the things that made their lives more
difficult.
Outings
The groups organised five outings and held a joint meeting with
a parents' group from another town. The outings were planned,
organised and paid for by the parents.
Arranging the outings
took up a lot of time in the groups spread over many weeks. They
involved the parents in setting up a bank account, running a
savings scheme, finding information about where to go, working
out costs, sorting out transport, managing the children - and
resolving all the differences that arose within the group about
most of these issues! The outings were important because:
- The parents and
workers enjoyed them.
- They were something
to look forward to and to think about afterwards. As one parent
said, 'We want some sweets in our life, not all sours.'
- The fun was in
the sharing. 'It was nice to go, even just going to McDonalds
for a meal with others instead of sitting there alone with three
kids. Kids could meet others too.'
- They provided a
lighter side to the groups.
Projects
Parents worked together on a number of projects on their own
initiative arising from their ideas:
- They designed an
invitation card for prospective members of the group.
- They produced a
pictorial leaflet explaining what the group was about to accompany
the invitation card, and also for distribution to practitioners
and other outlets.
- They put together
a small booklet advising families what to look for when moving
house. This came about when a family in City Group was anxious
about making a move, and asked the group for advice on what to
do for the best. Members decided their pooled experience would
be useful to other people needing guidance.
- They worked on
a healthy-eating pictorial shopping list for people who couldn't
read. Over a number of weeks, parents collected recipes and information,
discussed a healthy diet and tested out ideas for a leaflet within
the group.
Many of the benefits
derived from these activities mirrored those listed above under
Discussion Slots. In addition, these projects:
- Made members feel
the group was important in its own right, as a way of helping
other families.
- Gave people the
feeling that they had something to contribute.
- Allowed them to
feel they could get things done.
Parents' Assessments
of the Groups
All the regular
attendees were given an opportunity to say what they thought
about the groups. Some wrote down their comments, some got others
to write for them, and some just spoke their mind. Without exception,
they all emphasised the positive benefits they had derived from
belonging to their group: common among these were meeting and
talking to other people, sharing problems and gaining confidence.
'I liked meeting
new people and getting on with them. I was always stuck in before.
It was a break from the children.' (Stella)
'It's something
to look forward to. It was nice to go........ I knew one mum
from seeing her at school. We see each other quite a lot now.
I can talk to her about anything, better than my family. Like
abuse. We talk about things.' (Julie)
'Because of group
I am able to meet new people and talk with them. I'm more open.
With going to that group I found it good.' (Dilly)
'The group helped
me as it got me talking about my anger. When I talked about my
daughter it made it seem as if she was there........It made me
feel like a mum.' (Tricia)
'When a parent
is talking in the group, and listening to what they are going
through each week, and taking an interest in, and just by talking
to new people, you think you're not the only one in the world
with problems.' (Catherine)
'The group helped
by supporting me and giving me someone to talk to.......I get
a lot out of talking to different people. Everyone has been good
to me. Thank you all for being there.' (Emily)
'It's somewhere
where we can be honest.' (Eric)
'I felt safe
talking there and better after talking.......The group is different,
it's different because it's nothing to do with services. We sort
out other people's problems.' (Moira)
'Everybody's
been there to listen. I enjoy listening to other parents and
what they've been through. It gets you away from family pressures,
although I know they're still there.' (Gillian)
Conclusions
This paper has described
the work of Parents Together, an action research project
which set out to use an advocacy approach to supporting parents
with learning difficulties. In this concluding section we consider
how far the project succeeded in achieving its aims and summarise
the key lessons for practice that emerged.
In arriving at a
summative assessment of project outcomes, it is necessary to
link the information we have presented on the working of Parents
Together - the process side of the project - to its original
aims and ask how far it was successful in lightening the load
on parents, challenging discriminatory practice and improving
their self-esteem. In approaching this task, it is important
to remember that action research of this 'empowering' type (
see Hart and Bond (1995) for a useful typology) is more a matter
of engagement than experimentation in which new learning comes
more from hands-on experience than the application of scientific
methods (Winter, 1987). The general conclusions that follow come
out of a critical appraisal of the evidence contained in the
portfolio of information built up during the course of the project.
1) The parents
felt better for having an advocate but the advocates could do
little to change their situation.
All the evidence - in terms of what parents said about the project,
the record of their participation, practitioners' judgements
and the experience of the advocates - shows that parents felt
empowered by having an advocate to call on or a group to attend.
At the same time, the advocates were aware of just how little
they succeeded over the course of the project in doing anything
about those things, like bad housing, victimisation, poverty,
system abuse, which made life difficult for the parents.
2) Advocacy cannot
ameliorate parents' troubles, but it can act to prevent them
being compounded by bad practice and competence-inhibiting support.
In terms of the model of support on which the project was based
(see above), Parents Together had little success in relieving
the environmental pressures on parents, but it did succeed in
changing for the better the way in which the parents were regarded
by some practitioners and the kind of support they received.
Advocacy can successfully challenge specific instances of bad
practice, but it cannot change the system that generates it.
The goal should be to get the system working better to support
families, rather than to get everyone an advocate.
3) Without an
adequate infrastructure of health and social services, advocacy
alone is unable to relieve the environmental pressures that undermine
parents' ability to cope.
One-to-one advocacy work with parents who have learning difficulties
is like pushing string. The pressures on the parents and the
problems they face are unremitting. At the same time, services
geared to the needs of these families are missing and what services
there are tend to be crisis-oriented, child-centred rather than
family-focused, unreliable, inflexible, unco-ordinated and thin
on the ground (Booth & Booth, 1994a; 1996b). Consequently,
there are few resources available for the advocate to mobilise
in order to relieve the environmental strains on parents.
4) Advocates
were no more successful than the parents themselves over the
longer term at dealing with the failings in the system. In both
cases, individuals were worn down by the constant struggle to
get anything done.
Life is tough for parents with learning difficulties. The pressures
that bear down on them can weary their advocate too. An advocate
cannot expect to change agency policies or practices that impact
unfairly on families; make professionals like the parents or
treat them with respect; undo the harm done by deficiencies in
the services and support provided to families; shield people
from discrimination and day-to-day harassment or change the attitudes
that fuel their victimisation in the community. Squeezed between
the scale of the problems parents face and the unavailability
of appropriate services, advocates are easily pushed into taking
on more than they can realistically hope to manage, with the
attendant dangers of disillusionment and exit.
5) The advocacy
support groups were successful in helping people to work with
their problems (if not resolve them) and to feel better about
themselves, but support groups represent an extension of, rather
than a substitute for, one-to-one advocacy.
The advocacy support groups were more successful in converting
effort into effect. They:
- Got to more people
for less advocacy time.
- Allowed parents
to meet each other.
- Served as a platform
for challenging discriminatory attitudes.
- Boosted parents'
self-esteem and confidence.
- Provided opportunities
for learning.
- Brought some fun
into people's lives.
But not everyone
was able or wanted to attend a support group. Even the people
who did regularly go along to the groups had some problems that
were better addressed confidentially, on a one-to-one basis.
The advocacy approach
adopted by Parents Together serves as a model of how to
work in partnership with parents who have learning difficulties.
Indeed, given that many of the factors undermining their ability
to cope are the same as those that make it hard for people without
learning difficulties to be good parents, the approach has implications
for practitioners working in partnership with all families in
need.
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