It’s OK to say ‘I can’t cope’

(The names of the service users have been changed)

CASE NOTES
Practitioner:   Karen Taylor, care manager,  and Brian
Marshall, practice  team leader.
Field: Learning difficulties.
Location: Glasgow.
Client: Rory McFadden is a 25-year-old man with
Down’s syndrome and  very limited verbal communication.  He lives
with his mother, Fiona.  His siblings have all moved out and  his
father died three years ago. 
Case History:  Rory requires assistance in all 
aspects of daily living and receives  36 hours a week day support
from a  care provider, and attends a day service twice a week. His
mother has mild learning difficulties and problems with anxiety and
panic attacks. There is no doubt that she loves Rory but her own
difficulties (not least a lack of positive parenting in her own
childhood) have a large impact on her ability to care  for him.
Previous care managers have consistently grappled with these
concerns. Not long after Karen Taylor  took over the case Fiona’s
ability  to cope deteriorated. 
Dilemma: Although aware that she  was unable to
cope, Fiona would not  ask for help for fear of having Rory  taken
away from her.
Risk factor: By allowing a vulnerable Rory to stay
at home with his mum,  with all her difficulties, there was a risk
that he may suffer from neglect.
Outcome: Fiona is now able to ask for and accept
help with caring for Rory –  and he continues to live at home with 
his mum just as he always wanted.

British parents who are struggling are less likely to ask for help
for fear of being labelled failures than parents in some European
nations, such as in Scandinavia.

For Fiona McFadden, a mother of five, such a fear had been rooted
in her past experiences. A woman with mild learning difficulties
who drank heavily and was vulnerable to bouts of depression, she
had frequently been unable to cope with her children, at times
resulting in their removal by child protection social
workers.

However, now all her children have grown up and, all bar Rory, have
moved out. Rory, 29, has Down’s syndrome. Last summer, despite an
extensive support package in place, Fiona was finding it
increasingly difficult to cope with Rory.

“When I first got involved I was aware of the issues and my
priority was to get in and establish a good relationship with
Fiona,” says care manager, Karen Taylor.

“The family had been known over the years to the department because
of concerns over their parenting, and I think it’s fair to say the
way the department had reacted had broken some of the trust with
mum,” adds practice team leader, Brian Marshall. “That’s why we
chose to work on that with Fiona – and in a way more in tune with
an adult with learning difficulties because she had been used to us
being a child protection agency.”

At first, unsurprisingly, things were tough for Taylor. “Fiona was
very difficult to get hold of – she wouldn’t answer the phone, and
if she was in she might not answer the door,” she says.

There were also concerns that Fiona was drinking at that time and
associating with other people who were using her home as a party
house. “She was lonely, depressed and letting inappropriate people
into the house – and there was a major family dispute which
involved Fiona being assaulted. Naturally we were concerned about
Rory’s well-being,” says Marshall.

Fiona then began to stay at times with a new partner, who lived
outside Glasgow. She would take Rory with her thus depriving him of
services. “She had no understanding of the need to pick up the
phone and tell us. We all go away for a few days – that’s fine. The
care provider even said if they had known they could have made
attempts to visit so that Rory could get some support,” says
Taylor.

Marshall adds: “We had to tell her that going away like that wasn’t
acceptable because she was putting Rory at risk. We wanted her to
come home and work alongside us. We had no option but to call a
vulnerable adults case conference.”

The conference pulled together all those involved. “We focused on
building relationships and supporting Fiona to cope with Rory’s
care. In fairness, she was a caring parent but didn’t have the
skills to cope.”

Workers helped Fiona focus on the positive side of things. “It
wasn’t just about what was she wasn’t doing, but rather what she
was doing well and what we could help her with. For example, when
Rory challenged, she would challenge back: shout, bawl and threaten
him – because that was the way they went at each other. It’s easy
to be judgemental about the physical stuff that’s going on – but it
was a cultural thing for them. Rory also interacted in that way
with his siblings and so we had to work around that,” says
Marshall.

He continues: “We had to show mum ways to positively parent and
convince her that it’s acceptable to hold your hands up and say,
‘I’ve got a son with a learning difficulty: it’s hard and I’m not
coping’. This was tough for her because in the past when she said
that the department removed her children.”

This is where the trust built up by Taylor became important. “When
the case conference was set up she had already started to make
significant changes to her lifestyle. Afterwards she said she was
nervous but that it was really good to see all the people who cared
for Rory, and recognised that it was for Rory’s benefit,” she
says.

It was a big turning point for Fiona. “Now everything is great,”
smiles Taylor. “I still visit. She can’t read and her phone is cut
off at the moment, but she now answers the door to me or if she’s
upstairs she’ll shout out the window to me – which is something she
would never have done before.”

Marshall adds: “We recognise there will be times when mum’s health
will impact on Rory – we know that. We’re aware of the issues but
what we have is a level of trust with Fiona, who can now say to us
‘I’m not doing too well, I need help’. That’s the
difference.”

Arguments for risk

• It is preferable to keep families together if possible. Rory
  and Fiona’s relationship may have been volatile at times but there
  was a recognisable bond and love between them. That was something
  worth preserving and worth the risk. “He was where he wanted to be
  – at home with his mum,” says Marshall.
• The workers recognised that trust was the key to keeping Rory
  safe at home. By winning Fiona’s trust they knew that she would be
  able to get in touch if things were getting too much and accept the
  support needed. Home carers, day service staff and Taylor would
  between them still have daily contact with Rory – and would be able
  to monitor the situation; provided, of course, Fiona stayed at her
  home rather than visiting her partner.
• The vulnerable adults conference ensured a consistency of roles
  and responsibilities. For example, Rory’s challenging behaviour is
  being managed consistently by home carers, day service staff and
  Fiona. 

 Arguments against risk

• Fiona simply struggles to cope. Her reaction, rather than to
  seek help, is to withdraw, become depressed and drink excessively
  which adds to her depression.  Given Rory’s vulnerability, Fiona’s
  physical and mental health and lifestyle cannot be considered
  safe.
• There appears to be a number of concerns raised that were not
  acted upon. As Taylor says: “Support staff would say that the house
  was not a hygienic, tidy or safe environment. But I had been in a
  lot worse. It did seem that the living area and kitchen were fine,
  other areas might not have been up to my standard but that wasn’t a
  major concern for me.” 
• There were also reports that Rory was, among other things,
  untidy, poorly dressed and wearing the wrong sized shoes. However,
  Fiona displayed an inability to confront the truth. “When I tried
  to address these with Fiona, she would make out that other people
  were lying,” says Taylor.

Independent Comment
Taylor and Marshall have shown a real commitment to
positive practice. They have shown that if you work with someone
and relate to them as a person, you will establish trust, which
enables things to improve, writes Kathryn Stone.

At Voice UK we hear the most awful stories of people with learning
difficulties having their children removed, simply because the 
authorities cannot consider the fact  that people with learning
difficulties can be good parents, with skills, information and
support.

What’s really good about this case is that Taylor and Marshall
didn’t try to change Rory and Fiona; they changed everything around
them to accommodate them as individuals. For example, by
understanding that not everyone has a round-the-dinner-table chat
to sort out their differences. It seems that they struck exactly
the right tone here – protecting Rory as an individual and
supporting Fiona.

Now they could consider taking this good relationship further. For
example, what are the alternatives for Rory?  Does he have an
advocate to support him to think about what he wants for himself
for the future? Does Fiona want to carry on with her lifestyle – or
–  might she want to live her life differently?

Social work can be about a very complex web of relationships and
trust. This case has shown that if you truly believe that each
person has a value then your trust will be repaid with benefits for
potentially very vulnerable people.

Kathryn Stone is director of Voice UK – a national learning
difficulties charity