chris hatton keynote - seattle club conference 2014

How does research have an impact on the daily lives of people with learning disabili7es? Sea:le Club Conference 2014 Chris Ha:on

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#sclub14 @chrisha:oncedr @ihal_talk

Today

•  How does evidence have an impact on policy (and then have an impact on people’s daily lives?) –  Findings from public health –  Some examples I’ve been involved in

•  Research/academia – the view from outside? –  Ins7tu7onalised limita7ons of learning disabili7es research

–  Evidence and experience •  What to do?

How does evidence have an impact on policy (and then people’s lives)?

•  All share a mo7va7on to make a difference through research?

•  All have (explicit or implicit) theories of how research does (and doesn’t) have an impact on people’s lives?

•  Cartoon: Young Nonprofit Professionals’ Network of the Twin Ci7es

Is the rela7onship between research and policy…

1.  Technocra7c, instrumental? •  “Research evidence is (or should be)

one of the key factors influencing policy decisions but, unfortunately, ‘poli7cs’ o^en gets in the way and researchers do not always produce the right kinds of evidence.

•  To improve the use of evidence in policy, researchers need to develop be:er rela7onships with policymakers…and focus on producing policy-‐relevant research”


2.  Complex, messy? •  “A mul7tude of factors influence policy

decisions and seemingly small factors can lead to significant changes...The policymaking process can be so complex that chance can play an important role.

•  …Researchers…need to act as (or engage the services of) ‘policy entrepreneurs’ who will work to promote their favoured ‘policy solu7ons’…, adap7ng solu7ons to exploit emergent ‘policy windows’”


3.  Norma7ve, poli7cal & interest-‐based? •  “Policy decisions largely the result of

poli7cal ideologies/interests. Research may inform ideological posi7ons but only likely to be overtly employed by policy actors when it supports (or at least fits with) overarching ideological framework or interests.

•  By developing closer rela7onships with policy actors, researchers likely to increase flow of research into policy but only if it complements dominant ideologies/interests.”


4.  Democra7c, conceptual? •  “Policy decisions informed by public

percep7ons & values &, over long periods, research cumula7vely informs these percep7ons & values. While researchers may occasionally influence policy directly, more common research influence via contribu7on of knowledge to shi^ing conceptualisa7ons of issues.

•  This informs context in which policy decisions are made (importance of concepts, languages & discourses)”

Is the rela7onship between research and policy… 5.  Construc7vist, sociological? •  “Rela7onship involves mul7-‐direc7onal

‘interplay’ (policy influences research as well as the other way round).

•  Importance of language & discourse, as the knowledge ‘exchanged’ is a malleable en7ty…”

•  “…More helpful to think of ideas (rather than evidence) as unit of analysis.

•  Need to carefully unpack how knowledge claims are constructed & translated, & to explore the decisions that researchers and policy-‐makers make”

Findings from public health

•  How and why does some public health evidence translate into policy and ac7on, and some doesn’t?

•  Katherine Smith suggests that, to be ‘successful’, strong evidence alone isn’t enough. –  Evidence needs to become an ‘idea’ that can fit within prevalent ‘ins7tu7onalised ideas’

–  ‘Idea’ needs to be boosted by ‘policy facilitators’

•  Cartoon: Young Nonprofit Professionals’ Network of the Twin Ci7es

Ins7tu7onalised ideas

‘Received ideas’ – the fundamental (and largely unques7oned) assump7ons made by poli7cians and policymakers Highly relevant when thinking about policy & people with learning disabili7es 1.  A medical model of health [disability?].

Good health is the norm from which ill health deviates. Health is individual responsibility and medical/health interven7ons are the solu7on

2.  Economic growth is the primary objec7ve of (all) policy

Policy facilitators

Increase the chances of an idea being taken up and implemented 1.  Present a posi7ve policy

alterna7ve, rather than the idea being just a cri7que

2.  Build a broad coali7on with an agreed idea & a specific programme

3.  Have an idea that can be implemented in exis7ng ins7tu7onal structures (e.g. health service)

Evidence to idea to policy: Public health

Medical Model

Economic Case

Posi0ve Alterna0ve

Broad Coali0on

Fits Into Exis0ng Structures

‘Successful’ Tobacco control

Yes More produc7vity, less health

service spend

Smoking cessa7on Public ban

Yes Within health service

‘Flexed’ Mental health

Yes Employment Easy & quick access to CBT

Yes IAPT within health service

‘Cri7cal’ Health inequali7es

No – social model

Not really made

Not ar7culated/ agreed

No -‐ fragmented

Cuts across govt

structures -‐ societal

‘Charisma7c’ ? ? ? ? ?

Evidence to idea to policy: Some things I’ve been involved in

Medical Model

Economic Case

Posi0ve Alterna0ve

Broad Coali0on


‘Successful’ Annual health checks?

Yes Less health service spend (in long run)

Annual health checks

Yes Within primary care

‘Flexed’ Personal budgets?

No – but…

Be:er outcomes at no extra cost

Personal budgets

Yes No – but…


No – social model

Not made Not ar7culated/ agreed

Beginning to form?

Cuts across govt


‘Charisma7c’ LB Bill?

No! Trying to build

argument for no extra cost

LB Bill Forming No – legal underpinning

Successful? Annual health checks for people with learning disabili7es •  High priority for DoH to address health

inequali7es of people with learning disabili7es triggered by ‘Death by Indifference’

•  Clear proposal, with some evidence, located in one service (primary care)

•  Na7onal incen7ve scheme for GPs since 2008/09 (but only rolled forward annually)

•  Extending to 14-‐17 year-‐olds •  Now supposed to be accompanied by

clear Health Ac7on Plans

Health checks: Systema7c review (Robertson et al., 2014)

0%

10%

20%

30%

40%

50%

0

50,000

100,000

150,000

200,000

250,000

2008/9 2009/10 2010/11(revised)

2011/12(revised)

2012/13 2013/14

Had check On GP register Coverage by QOF

Trends in numbers and coverage (Glover, 2014)

Learning Disability Health Checks 2013/14

Es7mated

Overall health check coverage by CCG, grouped by Area Team

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%


Percentage of people getting health checks


44 people had a LD health check

27 people have a GP who doesn’t appear to do LD health checks

29 people missed their LD health check

Proportion of practices participating by CCG, grouped by

Area Team

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%



Medical Model

Economic Case

Posi0ve Alterna0ve

Broad Coali0on







No – but…

BeMer outcomes at no extra cost

Personal budgets

Yes No – but…


No – social model


Beginning to form?

Cuts across govt



No! Trying to build



Flexed? Personal budgets

•  Ini7ally presented as ‘charisma7c’ radical overturning of rela7onship between person and state, with clear posi7ve proposal

•  Small-‐scale work overtaken by very rapid na7onal policy adop7on and expansion

•  Varia7on across country in extent to which personal budgets are being co-‐opted into exis7ng ins7tu7onalised structures

Flexed? Personal budgets

•  544 people with learning disabili7es (out of 2,679 people)

•  General posi7ve impact reported, but: –  Posi7ve impacts in some domains more than others (paid work)

–  Big geographical varia7ons –  Aspects of process made really difficult

•  Posi7ve impact more likely when: –  Whole process made easier –  Views included in planning (including budget seung)

–  Budget spent on community/leisure and PAs

People with learning disabili7es: Different types of budget (Ha:on, 2014)

People with learning disabili7es: Geographical varia7on (Ha:on, 2014)

10

115

210

0

25

55

5

35

80

0 10

40

0

50

100

150

200

250

Num

ber o

f working age adu

lts with

learning disab

ili0e

s per 100,000 pop

n Working age adults with learning disabili0es geRng a direct payment (DP) / self-‐directed support (SDS): boMom 10% of

LAs vs England total vs top 10% of LAs


Medical Model

Economic Case

Posi0ve Alterna0ve

Broad Coali0on







No – but…

Be:er outcomes at no extra cost

Personal budgets

Yes No – but…


No – social model

Not made Not ar0culated/

agreed

Beginning to form?

Cuts across govt



No! Trying to build



Cri7cal? (Social determinants of) health inequali7es •  Increasing recogni7on of

health inequali7es experienced by people with learning disabili7es

•  Posi7ve proposals and policy solu7ons focused on improving access to health services

•  Broader social determinants (discrimina7on, poverty, employment, housing, ci7zenship) not being effec7vely addressed

Why?

•  Bad things (all of which make people ill) are more likely happen to people with learning disabili7es •  Being poor as a child •  Bullied and abused •  Excluded and isolated •  Being poor and unemployed as

an adult •  Poor health care

Neighbourhood (Emerson et al, in press)

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Neighbourhood quality: high

Neighbourhood quality: medium

Neighbourhood quality: low

Crime not a big worry

Feel safe outside in dark

Can access local services when

needed

ID (n=279)

No ID (n=22,927)

Civic and social par7cipa7on (Emerson et al., in press)

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Member of civic org Employed 16+ hrs per week

Easy to visit family 2+ close friends Goes out socially

ID (n=279)

No ID (n=22,927)


Medical Model

Economic Case

Posi0ve Alterna0ve

Broad Coali0on







No – but… Be:er outcomes at no extra cost

Personal budgets

Yes No – but…


No – social model


Beginning to form?

Cuts across govt



No – social model

Building argument for no extra cost


Charisma7c? Jus7ceforLB and the LBBill

•  Connor Sparrowhawk (aka ‘Laughing Boy’ or ‘LB’) – see his mother Sara Ryan’s blog here h:p://myda^life.wordpress.com/

•  Teenager with mul7ple labels & epilepsy

•  Coming to end of educa7on, adult social services not offering suitable support

•  Increasing distress and ‘behaviour that challenges’

Charisma7c? Jus7ceforLB and the LBBill

•  Placed in a specialist NHS learning disability ‘Assessment and Treatment Unit’

•  A^er 107 days in unit, Connor found by staff unconscious in bath and he died

•  Independent inves7ga7on report found Connor’s death to be ‘preventable’ – lack of staff recogni7on of his seizures in the unit, Connor was on 15-‐minute observa7on rou7ne from staff while in the bath (10 minutes at other 7mes)

Charisma7c? Jus7ceforLB and the LBBill •  A^er the publica7on of the independent

report, growing support for LB and his family

•  Star7ng off by using social media, the #jus7ceforLB campaign was born –  All volunteers contribu7ng in any way they

want to –  To fundraise for LB’s family’s legal costs and

to gain #jus7ceforLB –  And emerging from this, a dra^ #LBBill

h:ps://lbbill.wordpress.com/

Charisma7c? The (dra^) LBBill

•  A BILL TO: •  require due regard by public bodies to the

need for disabled people to be included in the community

•  require public bodies not to take residen7al care into account when determining ques7ons in rela7on to community support for disabled people

•  require local authori7es and NHS bodies to secure a sufficient level of community support for disabled people

•  ensure disabled people benefit from the most appropriate living arrangement for them

Charisma7c? The (dra^) LBBill

•  A BILL TO: •  require residen7al living arrangements

for disabled people to be given approval •  require repor7ng on residen7al living

arrangements made for disabled people •  amend the Mental Capacity Act 2005 to

safeguard the rights of disabled people and families

•  remove people with learning disabili7es and au7sm spectrum condi7ons from the scope of the Mental Health Act 1983

My involvement?

•  Personal, not professional •  Starts from emo7onal connec7on, not

from ‘ra7onal’ assessment of research priori7es

•  As one of very diverse coali7on, with clear aim (no privileged exper7se)

•  Not research (as my employer would see it)

•  Not part of the day job •  And yet – all the above are false binaries

that are blurred – what mo7vated me to do the ‘day job’ in the first place?

Research to ideas to policy (to prac7ce?): My experience •  Ideas trump evidence •  Ins7tu7onalised ideas exert very

powerful (and largely invisible) force •  Forming effec7ve coali7ons is crucial •  Even if these line up to change policy,

the gap from policy to the daily lives of people with learning disabili7es is huge

•  Is this gap always an implementa7on problem, or illustra7ng something more fundamental?

•  Waddington epigene7c landscape

Research/academia – the view from outside? (Peter Duggan)

Ins7tu7onalised limita7ons of learning disabili7es research: Who? •  Ins7tu7onally defined popula7ons •  Others usually decide who counts as a

person with ‘learning disabili7es’ •  Service structures (and gatekeeping

within them) decide who researchers might get access to

•  ‘Capacity’ o^en used by others to restrict research access

•  Who volunteers to take part? 0 20,000 40,000 60,000 80,000 100,000 120,000 140,000 160,000 180,000 200,000

MLD

SLD

PMLD

The popula7on(s) of people with learning disabili7es (Emerson & Glover, 2013)

Emerson & Glover (2013)

Ins7tu7onalised limita7ons of learning disabili7es research: New? •  O^en focused on the ‘new’, innova7on •  Less on the ‘old’ – what’s happening for

most people with learning disabili7es •  Focus on disrup7ons (‘new paradigms’)

rather than con7nui7es in people’s experience over 7me

•  Less on how ‘innova7ons’ fare over 7me (scaling up? falling by the wayside? morphing?)

I stood on a hill and I saw the Old approaching, but it came as the New. It hobbled up on new crutches which no one had ever seen before And stank of new smells of decay which no one had ever smelt before. Bertolt Brecht (Parade of the Old New)

The shock of the old (David Edgerton)

Understanding “technology in use”, not “technology by inven7on” “Most change is taking place by the transfer of techniques from place to place” “Imita7ng is seen as a much less worthy ac7vity than innova7ng”

Technology by inven7on vs technology in use •  Strong evidence for effec7veness of

supported employment… –  but 6.8% of adults with learning disabili7es are in any form of paid employment

•  Strong evidence for suppor7ng people with learning disabili7es and challenging behaviour in individualised community seungs –  But 3,000ish people are in specialist inpa7ent seungs

•  68% given an7psycho7cs in past 28 days •  High levels of self-‐harm, accidents, physical assault, hands-‐on restraint and seclusion

The shock of the old (David Edgerton)

“The twen7eth century was awash with inven7ons and innova7ons, so that most had to fail. Recognising this will have a libera7ng effect. We need no longer worry about being resistant to innova7on, or being behind the 7mes, when we choose not to take up an inven7on. Living in an inven7ve age requires us to reject the majority that are on offer.”

Ins7tu7onalised limita7ons of learning disabili7es research: Knowledge Working within academic ins7tu7onal constraints •  Ins7tu7onal preference for ‘high

value’ research income •  REF emphasis on ‘high impact,

interna7onal’ publica7ons •  REF linear view of ‘research impact’ •  Constraints on what counts as

‘evidence’, and therefore what’s admissible for ‘knowledge transfer’ and ‘knowledge exchange’

•  Cartoon: Frita Ablefeldt

What counts as ‘knowledge’? Science as exclusionary prac7ce •  Con7nuing effort to dis7nguish/privilege scien7fic knowledge

from other forms of knowledge •  Method •  But also prac7ce (and prac77oners)

•  From quickmemes

Science as exclusionary prac7ce

•  “Experience suitable for philosophical inference had to emerge from those sorts of people fit reliably and sincerely to have it, to report it, or, if it was not their own, to evaluate others’ reports of experience. Undisciplined experience was of no use.” (Steven Shapin)

•  John Wilkins: “You may as soon persuade some country peasant that the moon is made of green cheese, (as we say) as that it is bigger than his cart-‐wheel, since both seem equally to contradict his sight, and he has not reason enough to lead him farther than his senses.”

Science as exclusionary prac7ce

•  ‘Gentlemanly’ codes of scien7fic conduct •  The paradox that scien7fic ‘evidence’ can only

make a valuable contribu7on to society to the extent that it is seen as “objec7ve and disinterested”, and ‘’not produced and evaluated to further par7cular human interests” (Steven Shapin)

•  …and yet scien7fic research explicitly moulded by the state to be ‘useful’

Evidence vs experience: Applied Behaviour Analysis (among many!) •  “But you don’t properly understand

ABA” •  “But ABA is evidence-‐based” •  “But what you experienced isn’t real

ABA” •  “But that bad stuff isn’t real ABA,

even though its prac77oners say it is”

•  “But you would say that, wouldn’t you?”

Evidence and experience

•  ‘Disinterested and objec7ve’ research a rhetorical con-‐trick?

•  Can argue that data is exactly the plural of anecdote

•  Anecdote a pejora7ve term for experience? •  ‘Evidence’ in learning disabili7es research

limited in all sorts of ways •  Experience (like the experience of LB and his

family) can tell us vital things about reali7es that research does not

•  There is more than one route to ‘knowledge’ – they all need to be respected

What to do? Learning disabili7es research •  Who are we missing out? •  More on the ‘old’ rather than always chasing the ‘new’ •  What’s happening for most people, and why? •  More expansive view of knowledge •  Humility •  Nothing About Us Without Us?

What to do? Ideas to policy (and prac7ce) •  Clarity about what you’re trying to achieve –

what’s the idea & where does your research fit? •  What are you prepared to ‘flex’ to accommodate

to ins7tu7onalised ideas (medical model? economic case?)

•  What posi7ve alterna7ve can you construct, to operate within which structures?

•  What coali7on is needed? –  Power –  Who, how, why? –  Clarity about terms of engagement/mutual respect –  Evidence may not be the most important element –  Need to respect other forms of knowledge

What to do? Charisma7c change? •  What are our hypotheses about why good stuff doesn’t

happen rou7nely and really bad stuff does happen? –  Money/resources? –  Not knowing the best way to support people? –  Resistant service cultures? –  Staff with poor training/knowledge? –  Lack of legal protec7on? –  Discrimina7on? –  Lack of human rights? –  Social posi7on of people with learning disabili7es in society?

•  Depending on our hypothesis, will we need to pitch for charisma7c change?

Social media, Jus7ceforLB and me

•  Feel connected to a much broader range of people – no hierarchies

•  Feel much be:er informed •  Uncomfortable isn’t always bad! •  Checking my privilege •  Gets evidence into more places where it can

be useful… •  …but puts ‘evidence’ in its place •  Rekindled my sense of purpose

Hannah Arendt (via Sara Ryan)

“Imagina7on alone enables us to see things in their proper perspec7ve, to be strong enough to put that which is too close at a certain distance so that we can see and understand it without prejudice, to be generous enough to bridge abyss of remoteness un7l we can see and understand everything that is too far away from us as though it were our own affair.”

Thank you!

chris hatton keynote - seattle club conference 2014

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