Transcript Slide 1

York ‘4’ Families Raising
Disabled Children;
Family Led Holistic
Support Services
Alex Legge
Megan Malleson
How we have ‘evolved’; why we are here
together!
● When we started
● How we compliment each other
● How we are different; early intervention
crisis
Parent Mentoring Service
Megan Malleson
Parent Mentoring Coordinator
How the service has been embedded in York
Parent Mentoring – The National Picture
● CSV (Community Service Volunteers) is a national volunteering and learning
charity.
● CSV believes that volunteers have a unique role in supporting vulnerable
people in society.
● CSV set up Volunteers in Child Protection (VICP): volunteers support families
with a child protection plan.
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10 years of delivery across England
● Parent Mentoring Service is a pilot project aimed at supporting families at an
early intervention level.
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Runs on the same principles as VICP
2 years funding from Department for Education
Delivered in 8 locations around the country
Working in conjunction with a local authorities.
Parent Mentoring – In York
● Parents involved with CANDI identified the need
for peer support for parents with a disabled child.
● CYC worked with CSV to develop Parent
Mentoring into a service specifically for parents of
disabled children.
● CSV Parent Mentoring Coordinator would be
based at CYC offices, sitting alongside Special
Educational Needs teams.
● Parent Mentoring in York began in August 2011
and is currently funded until March 2013.
What is Parent Mentoring
● Matches trained volunteers with families who
have a disabled child and are struggling or
going through a stressful time.
● Volunteers provide:
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Listening ear
Helping hand
Chance to talk and think through problems and
concerns
Non-judgemental perspective from someone who
understands the family’s situation.
● Volunteers support parents to:
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Improve parenting skills and knowledge
Access existing community support services
Improve child’s access to school and enthusiasm for
learning
Understand their child’s impairment or medical
condition and possible coping strategies.
● Volunteers visit the family
each week for between 1
and 4 hours.
● Matches usually last for 6
to 9 months.
Volunteers and Families
Volunteers
● Recruited via a number of methods.
Families
● Referred by professionals
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● Go through an extensive 6 step
recruitment process.
● Must meet following criteria:
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● Must demonstrate right skills.
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● Receive regular support and
supervision whilst matched.
● Submit weekly Record of Contact
forms detailing their visit.
Some families self-refer
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A child/young person aged 5 to 25 who is
disabled or has physical or learning
needs.
Experiencing stress or difficulties
Willing to engage with a volunteer
mentor.
In a position where volunteer can make
an active difference
● Matching volunteers and families is
done carefully.
Case Study
Mum:
 New to York and recently moved in
with new partner & brought 2
families together – 7 teenagers!
 Partner’s 16 year old daughter has
learning and emotional needs.
 Mum wants to support her stepdaughter but is new to ‘world of
disability’.
Volunteer:
 Has a disabled daughter aged
16 who has similar needs.
 Has many years experience of
disability and disability services.
 Felt she wanted to support
other parents.
 Volunteer and Mum meet regularly at home and talk about how things are going.
 Volunteer helps Mum to understand services and how best to use them; e.g.
short breaks, transitions, statements etc
 Volunteer can empathise and offer suggestions and coping strategies.
 Mum is new to York and doesn’t know many people so they go out for coffee or
lunch
Case Study
‘She is such a positive
person and gives me a
boost each time she
comes. I use the sessions
as a real opportunity to
get things off my chest.’
Mum’s
thoughts on
her volunteer
‘As someone who is very
new to the special needs
sector, I needed a lot of
support myself from
someone who has been
going through it all for a lot
longer.’
‘One of the best things my volunteer has taught me is that
sometimes it’s ok not to know! Sometimes there aren’t any
answers to questions and having someone who can
empathise with that is great.’
Outcomes – the Stats!
Since August 2011...
68
4
People have expressed an
rounds of
volunteer training
delivered.
interest in volunteering for Parent
Mentoring.
21
39
families
referred to Parent
Mentoring.
Families
matched to a Parent
Mentoring Volunteer.
29
people
have been through
the recruitment
process to become
a Parent Mentoring
Volunteer.
Outcomes – What the Families Say
‘Because I know that my volunteer is
coming and I know that I can talk to
her about things, I feel more relaxed.
Especially when there are so many
things going on I can get a bit stuck’
‘It’s good to have
support for us
parents, not just
the children’
‘We thought that it
might be more formal
or structured than it
was and we were both
really pleased when it
wasn’t.’
‘It really helped having my
volunteer, I don’t feel I would
have been like I am now
without her’
Outcomes – What the Volunteers Say
‘I wanted to become a volunteer
because as the mother of a disabled
child I feel I’m now in the position to
help other families’
‘It helped that I
had a child as I
could empathise
and we had some
things in
common’.
‘Being a volunteer
helped to improve my
communication skills
and also helped to
increase my
confidence.’
‘Supporting Mum at the
Child Protection conference
when there was no one else
there for her was tough but it
was brilliant to feel that I
was there for her.’
Outcomes – What the Referrers Say
Parent volunteers have helped a
great deal with two families where I
am involved. In each case various
agencies had tried to support the
families but had not been accepted
into the home. There were worries
about neglect in both cases. The
parent mentors have been able to
establish relationships which are
warm, supportive, and clearly valued
by parents and all those working with
the family. I very much hope the
scheme continues.’
Specialist Teacher
The response to the referral was
timely and the professionalism of
the volunteers has been excellent.
They have worked in partnership
with mother and Children’s Social
Care and have ensured that
Children’s Social Care are kept
abreast of their involvement and
progress. Mother has shared with
Children’s Social Care that the
volunteers are approachable and
friendly.
Practice Manager, Children’s
Health and Disability Team.
The Development, Implementation
and Impact of FIRST:
Local interventions with disabled
children and their families at times
of acute need
Author and Service Lead
Dr Alex Legge
Consultant Clinical Psychologist
National Picture
•
Generally, there has been a reduction in the number of children placed into
residential care.
•
It has been recognised that children should where possible be cared for in a
family environment with a stable attachment figure (McGill et al, 2006).
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Policy and practice regarding children with learning disabilities has changes
radically in the past 40 years (McGill, 2008).
•
Support services for disabled children’s families often remain poor,
unsuitable or inaccessible (The parliamentary headings on Services for
Disabled Children 2006).
•
The Mansell Report (Department of Health, 2007) identified continuing
problems faced by people with learning disabilities whose behaviour
presents a challenge, including the break down of community placements.
–
2007 CSCI PWC analysis
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Approximately 3000 disabled children and young people do not live at home
(McGill, 2008)
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People placed out of area are more likely to be using challenging behaviour
(Emerson & Robertson, 2008).
“Because over the years we've been rejected and, you know, you
can't come here, we can't work with him, we don't want him, we can't meet his
needs, that you think residential is the only option.” (Mother)
McGill et al 2010
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Parents perceptions of residential school placements was generally positive.
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Some children reported homesickness; reduce family contact, increase
vulnerability and accentuate the difficulties of transition (McGill, 2008)
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Reinforces the view that the person could not succeed in a local, more
inclusive placement.
– examples of individuals returning successfully from out-of-area residential school
placements (Emerson & Robertson, 2008).
– variation in the use of out-of-area placements(Whelton, 2009).
Local Background
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Some parents wanted local services:
“if we had a bit more support within the home, if I could phone social
services and say this is the areas we are having difficulties with…. Just
support me to help me take my son out, until my husband came in and
respite, that would be my top. (Mother)”
McGill et al 2010
•
Clinicians felt frustrated:
Struggling to provide; prompt responsiveness, intensive assessment/support and the
coordination needed to maximise the effectiveness of local expertise
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Commissioners wanted more options:
In many cases, high cost placements are the results of crisis purchasing and can be
avoided through more effective planning (Pinney et al, 2005)
Results to be achieved
•
To reduce the number of out of area assessment and placements required.
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To improve the MH ‘service experience’ for children with complex needs and
their families.
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To facilitate the provision of a stable/reliable home environment and
support structures.
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To support local families.
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To support and coordinate local professionals, services and expertise.
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To improve and develop local provision.
Service Structure
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Core Business: FIRST works with children who have a learning disability
and use severe challenging behaviours, when there is a risk of the home
situation and/or local provision breaking down.
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FIRST has one member who is solely committed to the service.
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‘Wrap Around Support’: The service works together with the child’s family,
environment/s and other supporters (including professionals and services
supporting the person)
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Can do: a key feature of the service is linking, coordinating and supporting
local professionals, services and expertise.
The Provision
Tier 2: Moderate support; CAMHS
Tier 3: High level support for more
complex needs; LD Team
Tier 3 Plus: Intensive
support; highly
specialist needs
Tier 4:
Specialist
Residential
.
Number of children accessing the service
Tier 1: low level support; PMHW
Referrals Over
Fourteen Months
•
12 Local referrals accepted:
–
–
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9 parents wished for children to remain in area
3 wished for an out of area placement
Mean Age
13.1
Gender
FIRST Referrals
Boys
12
Girls
5
Mean DBC
94
5 Out of area assessment referrals accepted;
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3 at breakdown/ requesting extra provision
2 to support transition back into the local area
GAS Common Themes
Identified
Aggression/ property
destruction
Sleep
Self Injury
Range of Hours Involvement
20-249
Interventions
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Involved close working with various professionals from social care,
education and health.
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Linking with community provision to develop accessibility.
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Has involved various different types of direct and indirect working.
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Significant training, supervision and coordination.
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Advocacy, including changing ingrained perceptions.
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Required flexible, responsive working hours.
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Strategic working to develop local services.
Outcomes
Three Local Children Discharged
All reduced range between 9 and 60 percentile drop
On-going cases; Post initial trial intervention total score dropped over 20 marks
Developmental
Behaviour
All improved range between
Checklist
18- 40 percentile drop
Perceived
Future
Outcomes
Questionnaire
Goal
Attainment
Scale
All goals set improved by
either ‘somewhat’ or ‘much
better’ than expected.
All changed from ‘May need an out of area assessment’ to ‘Will remain at home
with current package of support’
In once case there was also a change in wishes from ‘ placing in an out of area
provision’ to ‘remaining at home with current package of support’
Professionals
Families
‘Acting, rather than just saying. You seem to be
‘I find the joint working aspect of the service
getting things done. Without this people don’t seem
very helpful as it has allowed a more
to be motivated, no one person ‘geeing people up’
intensive approach to be taken with the
saying it can be done….. Why has it taken such a long
child and in turn this service has enabled
a more multi agency approach to be taken time for them to realise there was a gap that they
with this child’ ……‘enables specific issues weren’t fulfilling’
to be addressed faster. The service is also
able to take a more holistic approach on
given situations’ (Social Worker)
‘We feel the support has been a lifesaver for us at
a very difficult time for us as a family. It’s a
This has made my job a lot easier, and I’d like fabulous service.’
to see it continue – I have no doubt that
this will ultimately prove to be cost
effective and much better for the patients
and their families. (Paediatrician)
‘I feel that I have an advocate, someone to say it’s
ok and will get better, someone acting
Really improved with the service and very
independently for my son, free of some constraints
rapid development over a relatively short
to enable a true picture of the situation. Sharing
period. Really helping in identifying gaps
her professional knowledge with other
and provision and useful ways of working
to try and address these (Psychiatrist)
professionals has been helpful’…..’ so feel more
positive that people understand my son’s needs
currently’
Case study
Child’s presentation;
Age 13 on referral, large; over 6ft and very broad
Learning Disability
Epilepsy
Severe Autism
Limited communication
Poor sleeping pattern
Use of Severe challenging behaviour:
– Climbing
- Pica
– Aggression towards others; kicking, hitting, scratching, head butting.
– Undressing
Case Study
• Current Situation
- Young person sleeping in parents bed and has a poor sleep pattern
-
Community Short Breaks limited due to ‘risk
-
Family feel their child has limited opportunities
Functional Assessment
- Boundaries, family relationships and stress levels
- Sensory needs
- Predictability
- Communication
Identifying activities that
fulfil X
Model of community support provision
i.e. sensory needs,
interests
etc
Problem
solving
Visiting the venue &
meeting with the provider.
How can the activity
be made ‘X friendly’
i.e. how it’s used
adaptations, provisions needed,
Risk assessment
Revision as
Helping X to
understand the activity/
What he is doing
i.e. using Xs language,
has he been there before
does this need to be considered
e.g. using a different entrance to
allow new association,
social story for process, visual
timetable
The right people
i.e. a lead who has confidence,
someone X has confidence in
including their expectations and
boundary setting ability
Introduction of
new activity
Sharing
resources
Joint working and
coordination between
providers
PACT, GG,CSB
necessary
Balance between
Variety (novelty)
and consistency,
timetabling
Future
Developments
How we fit together
Front line heath, social and education staff
Parent
Mentoring
Service
Lime Trees
Local Authority
Health and
Disabilities
Team
FIRST
1
Agreed
that more
dedicated
work
required
to prevent
placement
breakdown
2
3
Supported
Resourced
care plan
Care Plan
advised
Managers and Commissioners
Special
Education
Services
Parent Mentor Role
FIRST SUPPORT
Volunteer and family get to know
each other based on
shared experiences
Intensive Assessment- systemic
functional assessment
Listening and practical support
Supporting the family to
implement professional
recommendations or family’s goals
Linking with existing community
support
Disabled Child
and
Their family
Collaborative formulation of
difficulties
Formulation and goal driven
interventions
Linking with wider systems;
maximising existing services,
working with commissioners to
develop services
Barriers and Challenges
● Anxieties about support/ intervention happening in the home.
● These services sit alongside local provision and should not replace
existing resources.
● The desire to fill gaps in service; at referral and during involvement.
● Keeping an awareness of the potential to dis-empower
● Knowing when to pull out- what is ‘good enough’.
● Ongoing funding; recognising the resource/ the added value.
Benefits of this type of work
● Intensive involvement; day to day support for a substantial period
● True holistic care; supporting the whole family in their environments
● Not being restricted by set or predefined actions
● Reduction of the ‘revolving door’ effect
● Cost Saving; reduces pressures on acute services
● Providing wrap around support which allows for continuity of support
once the service has ‘pulled out’
Contacts
Dr Alex Legge
Consultant Clinical Psychologist
Megan Malleson
CSV Parent Mentoring Coordinator
FIRST, CAMHS
Lime Trees
31 Shipton Road
York
YO30 5RF
Parent Mentoring Service
Mill House
North Street
York
YO1 6JQ
Tel: 01904 726610
Email: [email protected]
Tel: 01904 554302
Email: [email protected]