Transcript A Changing Legal Landscape: the view from Acquired Brain

A Changing Legal Landscape:
the view from Acquired Brain Injury
26th September 2012
9.45 – 10.00
Introduction from the Chairs
Jackie Burt, Vice Chair The Brain Injury Social Work Group
Francis Lacy Scott, The Brain Injury Group
10.00 – 10.45
The Welfare Reform Act and implications for people with brain injury
Neil Coyle, Director of Policy and Campaigns, Disability Rights UK
10.45 – 11.15
TEA BREAK
11.15 – 12.00
Growing into a Brain Injury: Key problems faced by children
and adolescents while in education
Beth Wicks, Education Consultant
12.00 – 12.45
Long Term Prospects after Brain Injury
Dr Simon Fleminger, Consultant Neuropsychiatrist, Glenside Hospital
Emeritus Consultant, SLAM Visiting Senior Lecturer, Institute of Psychiatry
12.45 – 1.45
LUNCH AND EXHIBITION
1.45 – 2.30
Changes in the Legal Market, funding legal aid and the impact of
the Legal Services Act on ABI
Des Hudson, Chief Executive, The Law Society
2.30 – 3.00
TEA BREAK
3.00 – 3.30
The Benefits Framework and Eligibility
Jamie Popplewell, Wellfare Benefits Consultant, The Nestor Partnership
3.30 – 4.00
The Workings of the Court of Protection Proceedings – a view from all Parties
Emma Stacey, Foot Anstey
4.00
Close from the Chairs
Welfare Reform Act
Implications for people with
brain injury
Neil Coyle
Director of Policy and Campaigns
Disability Rights UK
Disability Rights UK
• Disability Alliance, National Centre for
Independent Living and Radar
• Radar Key, Disability Rights Handbook,
‘Benefits of Work’ service, members’ advice
line, ‘Skill’ helpline for disabled students
• Largest, pan-disability organisation run and
controlled by disabled people
• Membership organisation (DP, carers, LAs)
Issues for people with brain injury
1. Incapacity Benefit ‘migration’ – ongoing (to
March 2014)
2. Contributions-based Employment and
Support Allowance time limiting – since 30
April 2012+
3. Disability Living Allowance abolition for
people 16-64 years of age – April 2013+
4. Universal Credit – October 2013
Incapacity Benefits closure
• ESA from Oct 2008
• Work Capability Assessments for 1.6mil +
• Moving people from IBs to ESA/JSA –
headlines (70% “faking” media stereotyping)
• Target = 15,000 WCAs per week
• Poorly identifying disabled people’s needs:
40% appeal; 40% overturn initial decisions;
Mind CEO resignation from DWP advisory role
Welfare Reform Act 2012
• Flagship legislation; removes more from
disabled people than banking levy raises;
• Includes:
– time-limiting contributions-based Employment
and Support Allowance (for WRAG);
– abolition of DLA for disabled people between 16
and 64 years of age; and
– Universal Credit (incorporates income support,
income based JSA/ESA, housing benefit and tax
credits into a single entitlement.
c-ESA
•
•
•
•
365 day limit for c-ESA from 30 April 2012 (backdated). Only affects disabled
people who have worked. Total out of work support (£5,156 over 25s) made worth
less than annual Treasury payment from average salary (£5,820 from £26,100).
Ignores DWP 18 month research showing:
– 66% of ESA recipients have multiple health conditions/impairments;
– 74% received medical treatment for health condition over the course of study;
– 85% of the people moving from jobs to ESA had been in employment the
majority of their working lives;
– of people entering ESA from work just 26% returned to work in 18 months; and
– only 9% of people not in work prior to ESA had moved into employment.
DWP suggest it will affect 700,000 individuals overall; means-testing will protect
60% but 40% will not receive any out of work support.
280,000 disabled people – including people with brain injury are lose
support.
Duration of current ESA claim (at Aug 2011)
Total
Up to 3
months
3-6
months
6 - 12
months
1-2
years
2 years +
Caseload Caseload Caseload Caseload Caseload Caseload
Total
731,950
176,890
115,240
148,310
184,820
106,690
c-ESA
234,020
58,260
34,080
42,370
61,700
37,620
Income
and cESA
51,480
6,900
4,850
9,450
17,830
12,440
Income
only
381,780
93,680
60,520
82,260
94,260
51,060
Total
c-ESA
Both
Income
731,950
234,020
51,480
381,780
Newcastle
4,450
1,130
310
2,710
Manchester
9,660
2,180
540
6,160
Birmingham
15,610
3,540
980
9,900
Merthyr Tydfil
1,100
430
60
510
Edinburgh
5,580
1,590
350
3,090
Southwark
3,670
840
220
2,380
National:
Abolition of DLA
• June 2010 ‘Emergency Budget’: 20% reduction
from annual DLA expenditure by 2015/16.
• Delivered by abolishing working age (16-64)
DLA and introducing Personal Independence
Payments (PIP) with significantly reduced
eligibility and no low rate care equivalent.
• New assessment process to test eligibility, akin
to WCA and Atos have won England contracts
(Capita won Wales).
DWP ‘assessment thresholds’
consultation: Jan 2012
2015/16 DLA projection
Higher Mobility, Higher Care
Higher Mobility, Middle Care
Higher Mobility, Lowest Care
Higher Mobility, No Care
Lower Mobility, Higher Care
Lower Mobility, Middle Care
Lower Mobility, Lowest Care
Lower Mobility, No Care
No Mobility, Higher Care
No Mobility, Middle Care
No Mobility, Lowest Care
Total
2,200,000
350,000
290,000
270,000
130,000
170,000
450,000
230,000
50,000
10,000
40,000
190,000
2015/16 PIP projection
Enhanced Mobility & Daily Living
Enhanced Mobility, Std Daily Living
Enhanced Mobility, No Daily Living
Std Mobility, Enhanced Daily Living
Standard Mobility, Std Daily Living
Standard Mobility, No Daily Living
No Mobility, Enhanced Daily Living
No Mobility, Standard Daily Living
Total
1,700,000
340,000
190,000
230,000
110,000
250,000
190,000
90,000
250,000
Keep up to date with PIP plans
• Regulations not published yet, but will include the final
proposed assessment system (including descriptors and
weightings). Draft plans on DWP PIP page.
• Disability Rights UK Factsheet kept up to date online (and
we hope to have full, free guide if funder/sponsor found).
• Possible legal challenge still being considered by disability
organisations – DA submitted a ‘letter of claim’ pre-JR in
2011. The main concerns are loss of income and
DWP/broader Government failure to fully impact assess
plans (including equality of opportunity considerations:
ability to manage health, family life (HRA) and remain in
work. Important impact for disabled people – and
Government: Disability Rights UK analysis shows £630 mil
cost of 25,200 losing work.
Universal Credit
• Ends most income based benefits (including
IS, JSA, ESA, HB, TCs) .
• Positives: income taper entering work
removes benefit disincentives; simplification;
overall IDS theory of tackling poverty (based
on work being available and feasible).
• Negatives: research pending. SDP (esp single
disabled people, £58), parents of disabled
children (£30) and WTCs (£54) most at risk.
Further info/get involved
• Main site: www.disabilityrightsuk.org – includes:
• free Factsheets on main changes;
• news on research;
• updates on our work (eg on UC with Citizens Advice and
The Children’s Society being launched in Oct); and
• opportunities for future involvement.
• Join Disability Rights UK:
www.disabilityrightsuk.org/join.htm
• Contact: [email protected]
• Thank you.
Growing into an acquired
brain injury:
key problems faced by
children and adolescents while
in education
Beth Wicks
Specialist Education Consultant
Issues to explore

‘Normal’ neuro development

Usual curriculum and teaching methods in
schools

Effects of brain injury
Children are not mini-adults
Their brains are not small adult brains
It is important to take into account the
different effects of acquired brain injury in
children, compared with adults
It is important to take their age at injury into
account
Brain development
Early years
Major time of accelerated development, not
only physically but in key areas:

Cognitive

Social/behavioural

Language/communication
Young children show:
Improvement in their motor skills; ability to
form images; and understanding of cause
and effect and sequences.
As their frontal executive system starts to
develop, this begins to exert control over
socio-emotional and purposeful behaviour
from about 3 or 4 years and they also begin
to develop tactics for solving problems.
Language development from single words to full
sentences and constant questions promoted
primarily through adult interactions and
modelling
“Pre-schoolers acquire cognitive skills in part by
internalising social processes in their everyday
interactions with adults and older children.”
(Vygotsky, 1978)
Progress from object specific, to parallel and
eventually co-operative play (play being the
natural context for learning and cognitive
development)
Impulsive, egocentric, inflexible behaviour,
gradually modified e.g. when development
supports social role play, and early development
of theory of mind to see the world from the
perspective of others
Later in childhood
Development of ability to link behaviour and
consequence from about 7 onwards.
Development of language skills enable
more abstract thought and logical problem
solving.
Basic ability to resist distraction and
emerging impulse control.
(Anderson, 2001)
Also development of skills, for instance, to
reason, estimate and to calculate according
to rules.
Pre-teens
This is largely a time of consolidation and
maturation of previously developing skills.
There are also improvements to the ability
to plan and to divide attention
(Anderson, 2001)
Early to mid Teens
The visuo-auditory, visuo-spatial, and
somatic systems of the brain continue
developing.
(Savage, 1999)
Young people gradually develop dialectic
ability.
They are able to review formal operations,
find flaws with them, and create new ones.
Frontal lobes
The level of development of this area of the
brain is exclusive to our species.
(Human evolution has been termed “the age
of the frontal lobes”)
The frontal area is ‘the gatekeeper’ –
strategic problem solving, personality
control, planning and sequencing,
expressive language, response inhibition
etc.
Gap between reason and emotion
Possible lack of synchronicity between
development of different brain systems:
Cognitive understanding of and solving a
problem matures prior to balancing long
term consequences with current
social/emotional concerns
(Steinberg, 2008)
Plus increased reward seeking behaviour
= the ‘teenage brain’
Adult reasoning but Heightened need for short-term rewards
compared with longer-term gains
 Lowered capacity to avoid responses to
immediate influences, e.g. from peers

= risky decision making
“Starting the engines without a skilled driver
behind the wheel” (Dahl, 2001)
During adolescence young
people:

test boundaries

challenge authority

increase risk taking behaviour

develop social frameworks and judge
themselves in relation to their peers
Late teens to early adulthood
Maturation of the frontal regions where
executive functions are subsumed.
Young people begin to question
information they are given, reconsider it,
and form new hypotheses incorporating
ideas of their own.
(Savage, 1999)
How is this development reflected in the
process and methodology of education ?
Very Young children
●
Concrete thinking
●
Short attention spans
●
Ego-centric behaviour
●
Live in the here and now – poor
appreciation of consequences
●
Impulsive
●
Limited behavioural control
●
Disinhibited
Then…
•
Thirst for knowledge (Why? Why? How?)
•
Development of motor skills
•
Development of language skills (receptive
and expressive)
•
Development of ability to problem solve, to
process and retain information and to build
a bank of experiential knowledge
•
Begin to see things from other people’s
point of view
As a result of the usual developmental
capabilities of young children they are
taught and supervised:
• Explicitly
• Directly
We begin to teach (directly and by example):

Academic skills

Social skills

Behavioural boundaries
Once children begin to develop the ‘building
blocks’, this accelerates their learning
e.g. they learn to read
then read to learn
then learn to learn (metacognition)
As children mature there is an
increasing expectation for :
• Greater independence
• Increased self management and
awareness
• Extraction of principles from exemplar
situations
• Recognising parallels between a new
problem and an old, solved problem
• Indirect and experiential learning
• Forward planning
Some often recognised general
sequelae of acquired brain injury
Impaired attention/concentration
Poor memory
Slowed information processing and visuomotor skills
 Language and communication deficits
 Perceptual problems and hypersensitivity
 High levels of fatigue
 Impaired executive skills
 Impaired interpersonal skills
 Inappropriate behaviour
But
 Often relatively good recovery of physical ability
and superficial conversational speech



The implications of an acquired brain
injury during different
ages/developmental stages
Early Years
Children under 3 years are at double the risk of
sustaining TBI (the highest incidence cause of
ABI) compared with any other group through
childhood (Anderson et al, 2012)
Young children’s brains are particularly
vulnerable, e.g. because of their immature
network of neural connections
Studies (early injuries)
Kennard ‘principle’ - neuroplasticity can give
some protection but often at a cost,
compromising other skills or causing
‘crowding’ (Tonks et al, 2009)
Subsequent studies indicated very poor
outcomes and increasing difficulties with
reduced intellectual ability, behavioural
problems (including poor self-control) and
social problems, including isolation and
poor theory of mind
(e.g. Koskiniemi et al, 1995; Eslinger et al,
1992)
Recent 10 year follow-up study (Anderson
et al, 2012) Children injured between 2 & 7
years
Initial follow-up studies showed protracted period
of disrupted development post-injury (up to 3
years)
10 year follow-up showed opportunity for some
progression - not catch up but developmental
gains
Supports premise of effectiveness of intervention
even many years post-injury
But severe (and diffuse) injuries provoke lasting
impairments and significant effects on IQ
Suggests ‘recovery’ trajectories plateau between
5 – 10 years
We now know
Some weaknesses (and strengths) may not be
apparent until later in development – ‘the
sleeper effect’
 These children do make progress but the
learning process is frequently effortful and
inefficient.
 The demands of the education system (and
social expectations) rely increasingly on
characteristic areas of impairment
 So progress is often slow and the gap does
widen in some areas, particularly academically

Skills that are developing at the time of the
injury may be most vulnerable to being
disrupted (Anderson et al, 2010)
Cognitive abilities that children rely on to
learn new information and to generalise or
apply new skills may be compromised.
When the ‘mechanics’ of basic literacy skills
are well established they are often resistant
to the effects of ABI but children injured
before these skills are established often
face significant difficulties obtaining these
Numeracy may also be affected, but
sometimes less so as the acquisition of
concepts and learning in Maths is
established over a longer period
Adolescence
The second highest risk group for ABI and
the time increased or evolving problems
may become manifest following injuries
sustained earlier.
Skills developed and consolidated earlier in
development but application and
generalisation of these interrupted during
time of accelerated frontal development.
Plus – acquired problems overlaid on a
‘teenage brain’.
Like their non-injured peers, teenagers with
ABI returning to school just want to ‘fit in’
(Sharp et al, 2006)
Most reported problems in adolescence are
with behaviour, particularly relating to social
skills (Burke et al, 1990)
Other often reported difficulties are with
planning and problem solving (Anderson et
al, 2009)
Adolescents with TBI tend to perceive
themselves as “different” and are “painfully
aware of their physical, cognitive,
emotional, and behavioural changes as well
as their loss of abilities.”
(Sherwin & O’Shanick, 1998, citing
Bergland & Thomas, 1993)
As teenagers with ABI may often present with
problems regulating their behaviour;
impulsivity; poor social judgement; and
decreased awareness of their own emotional
state, they show a relatively high risk for
offending behaviour.
Brain injury to anterior brain regions shows
links with violent and criminal behaviour and an
increased risk of impulsive aggression (Bower
& Price, 2001. Blake et al, 1995)
Many studies from around the world show
consistent percentages of those within the
criminal justice system with TBI (most often
sustained during childhood or
adolescence).
For instance, UK study:
60% some form of TBI
16.6% moderate – severe TBI
Those with TBI on average 5 years younger
at time of first prison sentence (16
compared with 21)
(Williams et al, 2010)
A challenge to Education
Young learners who:
Have not established the ‘building blocks’ of
basic skills
Have impaired ability to take on new
learning in conventional ways
Struggle to progress from direct, explicit
forms of instruction
Frontal lobe
- attending vs. impulsivity
- organising, prioritising
(executive function)
Temporal lobe
- new learning
- emotional
A potent recipe for growing problems
Formal assessment may
compensate for:






Deficits in new learning
Attention deficits
Decreased endurance and persistence
Poor task orientation and impaired flexibility
Lack of initiation and spontaneous problem
solving
Weakness in speed and efficiency of
information processing
ABI in adulthood
Normal progress
Recovery and
rehabilitation
Brain injury
ABI in childhood
Normal progress
Progress after
injury
Brain injury
Implications and answers?
Awareness raising of an often ‘invisible
disability’
Empowering and skilling
Supporting
Damage to brain structures and connections
takes effect within the developing brain from
the moment of injury.
Thereafter the repercussions are like
ripples in a pool and complicated at future
stages when new skills would normally
‘come on line’ –
The sleeper effect
Their ability and attainment must be
compared and monitored over time
It is important to consider:
The developmental stage at the time of injury
What would normally be developing just after
that time and in the future
“There is increasing evidence that skills in a
rapid state of development at injury may be
more vulnerable to the effects of severe TBI.”
(Goldstrohm et al, 2005)
The young person’s progression may be
further complicated as a result of normal
development of some skills at a subsequent
stage which can serve to ameliorate some
previous difficulties.
An early brain injury does not just affect the
child
It affects that person’s road towards
maturity
…and the adult that they will become.
Literature reviews do not show much
evidence of good outcome measures for
intervention (Chevignard et al, 2012.
Turkstra & Burgess, 2010) and we need
more of these
but anecdotal evidence and personal
experience shows that appropriate
intervention can make a difference in
maximising potential and minimising or
compensating for deficit.
So...
We must raise awareness of the ongoing
and potential lifelong effects of ABI in
childhood and the need to adapt and modify
usual programmes or policies.
These young people are square pegs and
they do not fit in the round holes of our
usual systems.
Appropriate intervention throughout neurodevelopment can affect future potential
Long term prospects after brain
injury.
Dr Simon Fleminger
Consultant Neuropsychiatrist
Glenside Hospital
Retrospective study of
course of recovery of
291 with closed head
injury
all with PTA greater
than 1 week & coma
less than 1 month
Comparison of
patients left with
significant disability
with those left with no
disability
Roberts 1976
Mandleberg 1976
Dysphasia improves
• Thomsen 1984 (n=40) closed head injury
1st examination
2.5 yr
10 – 15 yr
Dysphasia
19
16
4
Dysarthria
15
15
15
• Luria penetrating injury Broca / Wernicke’s area
– initially significant aphasia in 95%; 66% at one year
• Walker & Blumer 1989 penetrating injury L cerebral
– aphasia present in “practically all” in early years
– 34% at 15 yr (36 of 106)
and 14% at 40 yr (7 of 49)
• Ludlow et al. 1989 penetrating injury
– of those with non-fluent aphasia at 6 months
– 33% still aphasic at 15 yr
Patient with uncomplicated recovery
Normal function
Patient who deteriorates
Moderate
disability
Coma
T1
T2
Time
Injury
Long term outcome - WW II veterans
evidence of decline over time post-injury?
• Corkin et al. 1989 -
Yes
– Head injured compared with peripheral nerve injury
– AGCT and Hidden figures measured at 10 and 40 yr post-injury
• Walker and Blumer 1989 -
Yes
– 25% of men had varying degrees of mental deterioration beginning
about 25 yr after injury
• self and informant report – not very well quantified
• Newcombe 1996 -
No
– Comparing scores at 20 yr post-injury with those at 40 yr post-injury:
• only slight decline in Progressive Matrices (45.5 → 42.0)
• Mill Hill Vocabulary improves a little (55.5 → 58.3)
• “there is a striking preservation of cognitive ability”
Interpreting long term outcome
studies
If some patients do worse at T2 compared
with T1 need to consider:– Random variation / Reliability of measurement /
Regression to the mean
– Ceiling effects
– Controls would have done the same
• eg. age effect, increase in unemployment rate
Interpreting long term outcome
studies – drop out bias
Those dropping out :–
–
–
–
socially deprived / from ethnic minority
less education
more alcohol / drug abuse pre-injury
violence as cause of head injury
(Therefore the higher the drop out rate the better the
outcome?)
Civilian cohorts – Early
Dunlop et al. 1991
• 193 cases mild to severe – mean GCS = 9
– attending disability programme
• rated on 4 occasions over the first 2 years
• compared
34 cases with ↑ NBRS ≥ 2
– ie. deteriorated over time post injury
• with
34 cases with ↓ NBRS ≥ 2
– matched for severity on first NBRS
Early deterioration
Dunlop et al. 1991
Early deterioration
Dunlop et al. 1991
Improved
Deteriorated
alcohol abuse
(pre-injury)
24
47*
Car
Motorcycle
Fall
Assault
Other
53
9
21
9
9
22*
22
9
31*
12
*p<0.05
percentages
Memory
Depression
Higher score = better performance
Katz Adjustment Withdrawn depression
Higher score = more depressed
Ruff et al. 1991
Verbal learning deficits: heterogeneity of recovery
80
70
Olver et al. 1996
60
Percent
50
2 years
40
5 years
30
Proportion of
patients reporting
problems
Av age at injury 28
20
57% PTA > 1 mo.
10
40% follow up
0
Memory Slowness
Fatigue
Irritable Inappropriate Anxiety Depression
80
70
Brooks et al.1986
60
Percent
50
1 year
40
5 years
Proportion of
relatives reporting
problems
30
Av age at injury 31
20
37% PTA > 1 mo
10
84% follow up
0
Memory Slowness
Fatigue
Irritable Violence
Anxiety Depression
1 - 5 year follow-up
• Olver et al. more positive
– slightly more independent at 5 yr
– eg. shopping and banking
62→70%
– but of 34 employed at 2 yr only 23 still in employment
at 5 yr
• Brooks et al. less positive
– At 5 years at least double the rate of:• burden rated as high
• threats of violence
• couldn’t be left in charge of household
24 → 56%
15 → 54%
18 → 43%
1 - 5 year follow-up
• Hammond et al. 2004 a & b n = 301
– all had received inpatient rehabilitation
– compared at 1 and 5 yr
32% follow up
• Disability Rating Scale
– defined change as > 1 pt difference
(6 pts from Totally dependent to Completely independent)
301
Year 1
53
Improved
228
No Change
20
Worse
Year 5
No effect of
alcohol
5 – 10 yr follow up
• Wilson 1991 and 1995
– seen 5 – 10 years before for rehabilitation
– n = 25; av. LoC = 5 weeks
• many were more independent & using
more memory aids
• Change in memory - > 2 pt on RBMT (/12)
– 8 improved and 3 deteriorated
More than 10 years
• Lewin et al. 1979 traced all but 10 of 479
head injured all with PTA > 1 week
• 10 – 24 yr post injury 178 had died
• Of 291 followed up, 31 (11%) showed
“progressive intellectual deterioration”
More than 10 years
• Thomsen 1984 n = 40
80% follow up
– 23 less than 21 yr at time of injury
– 27 with PTA > 3 months; all > 1 month
– assessment based on informant
2.5 yr
10 – 15 yr
Living alone
2
17
Living with parents 24
9
Half the patients who could not be left alone at 2.5 years now living
independently. Therefore improvement in psychosocial functioning
can continue for many years.
More than 10 yr – Thomsen 1984
• No change in motor problems
• Slight improvement in memory
• But at 10 – 15 yr marked increase in:– lack of interest, sensitivity to stress, tiredness
• and, particularly for those < 21 yr, some
developed
– restlessness, irritability & disturbed behaviour
More than 10 yr – Millar et al. 2003
• 1133 admitted to neurosurgical unit
• GOS at 6 months and 18 yr later
• 242†; follow up rate = 44%
– av age at injury 24,
396
6 months
85% GCS < 9
60
Improved
210
No Change
126
Worse
18 yr later
No effect of
APOE ε4 status
Glasgow studies
• 475 assessed at one yr after injury – 2/3
mild
• At 5 – 7 yr 115†; 219 (61%) followed up
1 year
Good Recovery
Good Recovery
Disabled
76
28
26
89
5 – 7 year
Disabled
Whitnall, McMillan, Murray & Teasdale JNNP 2006
Glasgow studies
At 5 – 7 yr those who deteriorated vs. improved were:-
more depressed
more anxious
less self esteem
more problems with alcohol
Whitnall, McMillan, Murray & Teasdale JNNP 2006
Glasgow studies
More recently assessed at 12 – 14 year after injury:15% of those who had survived 5 - 7 years, were now dead
32% of those surviving were worse than they had been at
5 – 7 years.
and this was associated with the perception, at 5-7
years, that locus of control was externalised, ie the
patient felt they had less control of their destiny than did
powerful others (eg. family or doctors).
McMillan, Teasdale & Stewart JNNP 2012
Odds of Improvement / Deterioration in 5 follow up studies
Odds > 1 means
more improved
than deteriorated
2
76%
56%
Hammond et al. 2004
Wilson 1991/5
46%
Rep
RBMT GOS
66%
1
DRS
GOS
Whitnall et al. in2006
press
Thomsen 1984
Millar et al. 2003
53%
% unchanged
0.5
DRS = Disability Rating Scale,
GOS = Glasgow Outcome Scale,
RBMT = Rivermead Behavioural Memory Test,
Rep = Problems reported by informant
Malignant distress on eye contact
Fleminger, Murphy, Lishman 1996
Why do some deteriorate over time?
Reporting effect
Informant report:•
•
•
•
parents change to carers
sensitisation / less able to cope in long term
making a statement about the care offered
more opportunities to become aware of problem
Self-report:• Insight improves
Why do some deteriorate over time?
Honeymoon period
In the early months post injury
• optimism – impairments steadily improving
• does well in structured / supported
environment of hospital / rehabilitation
• friends rally round
Why do some deteriorate over time?
Honeymoon period
Then
• alcohol / drugs reappear
• latent problems surface on return home or
return to work
• financial problems increase
• vicious cycles emerge
• compensation claims
• social networks lost…
Why do some deteriorate over time?
Organic decline
•
•
•
•
•
•
•
•
Hydrocephalus
Subdural
Epilepsy
Repeated head injury
Alcoholic dementia
Infection, complications following cranioplasty…
Stress related progressive cell death
Other injury related cell death (apoptosis,
transynaptic degeneration…)
• Alzheimer type process
• Independent disease
Total Brain
Blatter, Bigler et al. 1997 TBI injury severity moderate to severe
NB this is not a longitudinal study but consists of multiple cohorts each at
different times post injury
Plassman et al. 2000
bars represent 95% confidence intervals
Mortimer (1985)
Amaducc i (1986)
C handra (1987)
C handra (1989)
Broe (1990)
Ferini-Strambi (1990)
Grav es (1990)
v an D uijn (1992)
Li (1992)
Fratiglioni (1993)
C SH A (1994)
Fors ter (1995)
R as muss on (1995)
O'Meara (1997)
Tsolak i (1997)
C ombined
.1
.5
1
1.5
10 15
Odds ratio
100
Conclusions - in the long term:
• high rates of death
• perhaps 10 – 20% deteriorate
• In the less severe injury deterioration associated with depression,
anxiety and alcohol use.
• also get deterioration in very severe injury
– less easy to define the predictors
• Alzheimer’s disease?
– But even if yes only a small proportion get AD, and only a small
proportion of AD due to head injury
Lunch
Des Hudson
Chief Executive
The Law Society
Changes in the Legal Market, funding legal aid and
the impact of the Legal Services Act on ABI
The
Welfare Benefits
Framework
&
Eligibility
By Jamie Popplewell
Welfare Benefits Consultant
By way of introduction....
• I am the Welfare Benefit Consultant at Nestor Partnership and
came on board in May 2011
• I have 10 years experience in Welfare Benefits:
• Local Authority
• Department for Work & Pensions
• Freelance Adviser
• Adding value to our service
• Maximising client income
www.nestorpartnership.co.uk
What is currently available?
•
•
•
•
•
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•
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•
•
Income Support
Jobseekers Allowance
Employment & Support Allowance
Housing/Council Tax Benefit
Disability Living Allowance/Attendance Allowance
Carers Allowance
Child Benefit
Child/Working Tax Credit
Industrial Injuries Benefit
Pension Credit
....and the list goes on
www.nestorpartnership.co.uk
Means Testing
Primary benefits – first tier
• Income Support/Jobseekers Allowance (IB)/Employment & Support Allowance
(IR)
•Department for Work & Pensions (DWP)
Qualifying criteria
• Work - under 16 hours
• Capital - £6,000 - £16,000
• Age - 16 to State Pension Credit age
Allowances
• Personal Allowance
• Premiums
• Applicable amount
www.nestorpartnership.co.uk
Means Testing
Housing Costs - second tier
• Local Authorities
• Housing Benefit/Local Housing Allowance
• Household composition
• Broad Rental Market Area (BRMA)
• Council Tax Benefit
• Passport Benefit
• Discretionary Housing Payments (DHP)
www.nestorpartnership.co.uk
Pension Credit
• State retirement age for women - steadily rising to 65 in 2020
• SPC qualifying age
• 2012 - Born on or after 6th February 1951
Guarantee Credit
• Capital limits £10,000+
• Tariff income - Gross capital - £10K ÷ 500
Savings Credit
• Threshold - £111.80/£178.35
• Maximum - £18.54/£23.73
www.nestorpartnership.co.uk
Tax Credits – moving into work
Child Tax Credit
• Child elements
Working Tax Credit
• Working Hours – 24/30
• Childcare
Calculating the award
•
•
•
•
Gross award
Income threshold - £6,420
Withdrawal rate 41%
Net credit
www.nestorpartnership.co.uk
Need based benefit – Disability & Carers
Disability Living Allowance
• Personal care – “Unable to prepare a main cooked meal”
• Mobility – “Supervision walking on unfamiliar routes”
Attendance Allowance
• Over 65’s
• Constant Attendance Allowance – Industrial Injuries Benefit/War Disablement
Pension
Carers Allowance
• 35 Hours +
• Earned income limit £100
• Overlapping rules
www.nestorpartnership.co.uk
Need based benefit – Disability & Carers
• Industrial Injuries Benefit:
• Employed not self employed
• Accidents at work
• % Disablement
www.nestorpartnership.co.uk
Other benefits available
• Contributions based ESA - 12 month limit
• Incapacity Benefit - abolished by 2014
• Sate Retirement Pension
• Statutory Sick Pay - 28 weeks
• Child Benefit
www.nestorpartnership.co.uk
Interaction with damages
The 52 week rule...
Income Support (General) Regulations 1987; Schedule 10, paragraph 12A
Personal Injury Trusts
The value of any funds held in trust and the value of the right to receive payment under
that trust, following payments made to the claimant as a result of a personal injury,
such as vaccine damage payments and criminal injuries compensation, are to be
disregarded in full.
Income Support (General) Regulations 1987; Schedule 10, paragraph 12
www.nestorpartnership.co.uk
Interaction with damages
Tax Credit
Payments disregarded in the calculation of investment income:
8. Any interest, or payment which is disregarded for income tax purposes by
virtue of –
(a) section 751 of ITTOIA (interest on damages for personal injury), or
(b) section 731 of ITTOIA (periodical payments of personal injury damages)
The amount so disregarded.
Chapter 7, Table 4: Tax Credit (Definition and Calculation of Income) Regulations
2002
www.nestorpartnership.co.uk
Current changes
• April 2012 - Most benefits increased by 5.2%, in line with CPI
• Child Benefit frozen until 2014
• April 2012 - 50+ element removed from Working Tax Credit
• 2012/2013 - main elements of Working Tax Credit frozen
• Local Housing Allowance restricted for under 35’s
• 2012/2013 - Government contribution to DHP increased to £40million per
annum.
www.nestorpartnership.co.uk
....and finally
Any Questions...?
www.nestorpartnership.co.uk
Thank you
Nestor Partnership
Controlled House
Waterfold Business Park
Bury
BL9 7BR
DX 20511, Bury
T 0161 763 4800
F 0161 763 4809
nestorpartnership.co.uk
www.nestorpartnership.co.uk
Nestor Partnership is Authorised and
Regulated by the Financial Services
Authority
THE WORKINGS OF PROCEEDINGS IN THE COURT OF
PROTECTION
– A VIEW FROM ALL PARTIES
September 2012
COURT OF PROTECTION PROCEEDINGS
The jurisdiction of the Court
•
Where there is a dispute as to capacity section 48 Mental Capacity Act applies
•
“The court may, pending the determination of an application to it in relation to a
person (“P”) make an order or give directions in respect of any matter if:
•
•
•
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there is a reason to believe that P lacks capacity in relation to the matter
the matter is one to which its powers under the Act extend, and
it is in P’s best interest to make the order, or give the directions, without delay”
Reason to believe has been interpreted by the Courts as meaning “sufficient evidence to
justify a reasonable belief that P may lack capacity in the relevant regard”
WHAT THE COURT CAN DO
•
Section 15 Power to make Declarations
•
Section 16 Power to make decisions and appoint deputies in relation to
• Personal welfare
• Property and affairs
•
Section 21 Power to Determine issues relating to standard authorisations
•
Make determinations in relation to the validity of
• Advanced Decisions to refuse treatment
• Lasting powers of Attorney
COMMON ISSUES IN DISPUTE
•
Residence
•
Care
•
Medical treatment
•
Property and financial affairs
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Contact
•
Sexual relations
•
Marriage
WHO ARE PARTIES
Who may make an application?
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Automatically permitted to make an application
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Permission required by anyone else, when deciding the Court will have regard to
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A person who lacks, or is alleged to lack capacity referred to as ‘P’ protected party
Donor or Donee of a lasting power of attorney to which the application related
A deputy appointed by the Court for a reason to whom the application relates
A person named in an existing order of the Court, if the application relates to the order
The applicant’s connection with the person whom the application relates
The reason for the application
The benefit to the person to whom the application relates of a proposed order or directions
Whether the benefit can be achieved in another way
Individuals applying for permission to be a party need to state their case as to how
they can forward a case in P’s best interest and why they need to be a party.
LITIGATION FRIEND
Conduct proceedings and forward legal arguments on behalf of P in his/her best
interests
•
Who can be a litigation friend
‘A person who can fairly and competently conduct proceedings on behalf of an
incapacitated person and he or she has no interests adverse to those of that person’
•
Court has full control over the appointment and removal
•
•
Official Solicitor’s Office is litigation friend of last resort
Person appointed ‘consents to act’
GENERAL TIMETABLE OF PROCEEDINGS
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Application is made
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First directions hearing
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Practice Directions says within 5 working days for DOL challenges
Approximately six weeks for Best Interests
Interim orders and declarations made
Timetable thereafter depends on;
•
The number of issues
•
The evidence required
• number of experts
• expert availability
• whether expert evidence is accepted or contested
•
Court timetable
TENSIONS BETWEEN THE PARTIES
Human Rights v Safeguarding
•
Human Rights Act 1998
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•
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Ensures that we enjoy certain freedoms;
That we are protected from the state in terms of excessive interference;
That we are protected by ‘the state’ from particular forms of harm.
The right to self- determination by the right to be protected by the statutory authorities
ADDITIONAL EMOTIONS
Family members perspective
When asked about experience in the Court of Protection wife of a husband with ABI
reports:
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•
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•
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•
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Prior to being in Court I felt a complete lack of regard by health professionals for any
positive contribution I could make to my husbands care
I felt in the middle, as he blamed me for not taking him home. He became more aggressive
and frustrated with me.
I was then confused. I didn’t know what the right thing for him was, I changed my mind and
it was sometimes hard to answer the questions. I would say yes and no at the same time.
I worried that people thought I was going to benefit in some way, a gold digger for wanting
control his finances
I felt guilty for actually getting aspects of my own life back and enjoying that
It provided an opportunity to put forward to the court another side and I felt listened to
“Helped me to feel that I was doing everything I could even though it took so much time and
effort”
ADDITIONAL EMOTIONS
‘P’ perspective
•
Not understanding ‘why’ cannot go home
•
Uncertainty over future
•
Assessments…
WHERE IN AN INDIVIDUAL CASE DOES THE BALANCE FALL?
Duty to Consult
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•
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•
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With anyone named by the person as someone to be consulted
Anyone engaged in caring for the person or interested in P’s welfare
Any donee of an LPA
Any court appointed deputy
With P – ascertain wishes and feelings
THE COURT WILL APPLY A BALANCE SHEET APPROACH
Case Study - Cardiff Council v Peggy Ross (2011) COP
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82 year old woman in physical good health, but with dementia
Partner of 20 years aged 81
In twenty years had taken approximately 50 cruise ship holidays together
Prior to moving into a care home they had booked a cruise together
Resident in care home during the week and cared for by partner at weekends
He did not fully appreciate her care needs, she required prompting with daily
activities and taking medication
She would occasionally wander off
She said at times she did not want to go, at other times was indifferent
Partner felt she wanted to go and would benefit from it
He felt he could look after her
DO YOU CONSIDER IT IN P’S BEST INTEREST TO:-
•
Go on the cruise? Or not?
•
What did the court decide?
•
The judge felt that the Council’s approach to the best interests decision was too risk averse
and failed to take proper account of the potential benefits to Mrs Ross: it ‘smacked of saying
that her best interests were best served by taking every precaution to avoid any possible
danger without carrying out the balancing exercise of considering the benefit to Mrs Ross of
what, sadly, may be her last opportunity to enjoy such a holiday with Mr Davies. This led, in
my view, to trying to find reasons why Mrs Ross should not go on this holiday rather than
finding reasons why she should.’
FEATURES OF BRAIN INJURY CASES
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Multi disciplinary approach to ABI cases
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Care packages high staff turnover
•
? Long term well trained care workers and family members are able to support in the
home
•
Significant problem is recruitment of support workers, particularly in rural areas
•
Emerging evidence of the efficiency of client and family training
•
Evidence to support the effectiveness of home programmes for adults. Study
confirmed that many were as effective as programmed delivered by therapists -
Article Professor Mike Barnes on the Need for Long Term Rehabilitation After
Traumatic Brain Injury
•
Supervision and training is required and coordination by a robust care manager
WHAT IF YOU HAVE INFORMATION BUT ARE NOT A PARTY?
•
Situations where you know proceedings are happening
•
Write to the court / litigation friend
•
? can you disclose this information? Who instructed you?
•
Duty to consult when making best interest decisions, including
• Anyone engaged in caring for the person or interested in P’s welfare
THE COURT OF PROTECTION
The Royal Courts of Justice
Thomas More Building
Strand
London
WC2A 2LL
Tel: 030 0456 4600
THE OFFICIAL SOLICITOR’S OFFICE
81 Chancery Lane
London
WC2A 1DD
Tel: 0207 911 7127
THANK YOU
Emma Stacey
Solicitor, Foot Anstey LLP