University of Edinburgh
 

Early Diagnosis: Working with Families of Deaf Children

Presented in January 2006

Newborn hearing screening – evaluation, understanding and moving on

Professor Alys Young
School of Nursing, Midwifery and Social Work, Faculty of Medical and Human Sciences, The University of Manchester
alys.young@manchester.ac.uk

Introduction

  • Overview of the issue of evaluation in the context of NHSP.
  • Data from one aspect of that evaluation
  • Data from a connected 'what happens next' study
  • Provide lots of resources and signposts

Relevant background

  • Part of the nhsp evaluation team in England.
  • Currently direct the national evaluation of Early Support.
  • Additionally undertaken a range of commissioned research associated with early intervention, parenting and deaf children.
  • Currently run the research arm of the national project on informed choice for families with deaf children.
  • Part of the team carrying out the longitudinal outcomes study
  • Academic social scientist.
  • Registered social worker.

Overview of the Phase I evaluation in England

Why evaluate?

  • Tricky relationship between research evaluation and political decision making ...
  • Evaluation of 'pilot' sites, not about deciding whether or not to roll out the screen.
  • Evaluation is about demonstrating whether it works, how it works, how it can be improved and what to do next.

Evaluation questions in the England study

  • Can it be 'universal'? [Audit of screen performance]
  • Is it cost effective? [health economics study]
  • Is it 'damaging' for those whose children are not deaf? [maternal anxiety study]
  • How does it affect services? [the impact on services study]
  • What is the impact on parents? [the true case study]
  • What can we learn for the future? [the good practice study AND just about everything else...]

What the evaluation did not do...

  • Look at the process of implementation.
    Adrian Davis' Team

  • Look at the long term effects on adjustment, development and service delivery.
    The 'Positive Support' study

Sharing results from one aspect of the Impact on Services Study

Impact on services study included data from:

  • Teachers of the deaf
  • Social workers
  • Audiologists
  • GPs
  • Health visitors
  • Midwives
  • Deaf professionals (who may not be in the above groups, eg; Deaf role models/sign language advisors etc).

Teachers of the deaf and social workers. How, in light of NHSP, education and social services perceive:

  • Each others' roles with families of newly identified deaf children;
  • The nature of their multi agency practice;
  • What this tells us about early family support.

Impact on services domain. Evaluation included collecting data from:

  • 20 Social services departments
  • 27 Education services
  • Questionnaires, phone interviews
  • Before and after implementation
  • Phase One sites only

Some background:

  • 41% of education services described themselves as having no link with social services
  • 37% as having 'minimal' contact
  • 7% as being 'very satisfied' with their links
  • 70% of social services said they were 'rarely' or 'never' informed of newly identified deaf children
  • 20% saying they were 'always' notified

Patterns of referral and the social work role [Education's view]. Respondents fell into four broad groups:

1. The social work role is unwelcome, unnecessary and stigmatising for families.

2. The social work role seen as only in a crisis and only if absolutely necessary.

3. Social work role is one of routine liaison and generalised contact.

4. There is routine joint working between social services and education.

1. Unwelcome, unnecessary, and stigmatising

Would not actively encourage contact between families and social services.
One exception = child protection
Information about social services not withheld but regarded as peripheral.

"I'm not that enamoured of them being involved at a very early age...I don't see any reason why we...and we already do this, give information about social service for the deaf...they’re not really called upon at an early age."

Underlying this view:

  • Genuine concern not to 'panic' families;
  • Don't want to stigmatise families;
  • Cannot see what value added social services would bring anyway.
  • [No role understanding and no ascribed role value]

2. Only in a crisis, only if necessary. Not actively seeking to exclude social services, but role regarded as limited to particular circumstances:

"There's a lot of joint working at all levels, both in terms of crisis management and crisis prevention...basically the social work system, the current system, is to support families under stress. Well some families will be and some families won’t be."

Why this approach?

Not an active exclusion of social services.
An adaptation to perceived problems of joint working [an elective approach to joint working]

  • Social services poorly resourced
  • Personnel always changing
  • Unclear who to refer to
  • Unskilled social workers
  • Families do not meet the threshold for a service.

3. Routine liaison/generalised contact
Inter-agency information
Creating opportunity for families to have contact

Very valued:

  • Gateways to other services
  • Information
  • Counselling
  • Respite
  • Benefits
  • Equipment
  • Another view
  • Alternative support

4. Routine joint working (particular families)

  • Experience of referral prompting active response.
  • Focussed on particular family needs.
  • Meeting those could 'free up' the family to work more effectively with the education intervention.

Routine joint working cont.
[Examples of where shared vision and holistic understanding of family needs can work]

But predicated on:

  • Referral actually getting a response;
  • A specialist social work colleague;
  • Relationships built up over time.

What of social services’ views?

Social services' view of role with family and perception of joint working with education, strongly influenced by service arrangement:

  • Specialist social workers in Deaf/sensory teams (usually adult services only);
  • Social workers in children/disability teams (rarely deaf specialist).

1. Specialist deaf/sensory team views:
Generally called in for crisis management (not case management) and only as a last resort

Unacceptable because:

  • Reinforces stigma (social workers only fix dysfunctional families);
  • Could have played significant preventative role;
  • Families have rights to holistic/core assessment of strengths and needs;
  • Devalues and marginalises the role and service.

Some describe experiences of being deliberately excluded:

  • Because of concerns about the stigma they bring;
  • Because of concerns about their 'bias' and politics;
  • Because of concerns they will upset and confuse families.

Specialist social worker view:
See many education authorities with a single track communication policy NOT promoting informed choice, not working from a family empowerment model.

Clash of ethos between professions.

Why not use the strong links with Deafness and sign language that social services has for the good of families?

Examples...
"And I think by the time we get involved parents have been very heavily biased towards an oral approach...It's like we're an add on rather than of equal status and then of course if we go in with something opposing, not opposing, a separate choice then we're seen as the signing lobby..."

"We should be included in the introductory information for families whose children are discovered to be deaf. We are often marginalised and families are not encouraged to contact us. I believe we have useful specialist skills and often personal knowledge of deafness...We are trained to counsel and support/advocate for families and yet these skills are ignored. As social workers with deaf people we can offer support, counselling, advice, liaison between families and other professionals. We have a vast knowledge of deafness that could be utilised to benefit deaf babies, children and their families."

But accept there are huge problems:

  • Hardly ever any specialist deaf child social workers;
  • 'Responsibility' often with teams who do not 'understand';
  • Hard to make good internal joint working;
  • Information often does not reach them;
  • Often not a structurally mandated role;
  • Deaf children often don’t meet the threshold for a service.

2. Respondents in child/disability services

  • Limited role and that's OK;
  • Responsive to referral but minimal contact;
  • Low expectations of involvement;
  • Perceived lack of skills/knowledge;
  • Others (that is, education) better at it;
  • Deaf children don’t meet the threshold;
  • Couldn’t cope with more referrals anyway;
  • Significant questioning of what role social services should or could play.

Example
"Have you actually taken any measures to prepare for the new screening programme?"

"No, not really, no and that's something I do need to address...I mean I'm not being pejorative about people's social work skills, but I’m not sure it's best located in a social work team where there isn't anyone specially prepared to do those areas of work and as I say the team's very tiny and i don't see the potential in the short term future of developing that area of work."

Summary and conclusions

  • Hugely varied national picture, therefore, hugely varied family experience.
  • Organisational/structural service arrangements are significant influence on what happens.
  • Education and Social Services do identify similar underlying problems.
  • Don't necessarily understand each others' interpretations of those problems and their consequences.
  • Clear need to share perceptions of each others' 'culture' and ethos as well as seeking to understand role and function.
  • If we're going to turn effective multi agency working into reality we need to get to this level of perception and definitions and test them out.
  • Opportunity to use this and other data for reflective joint training.
  • But perhaps the real driver for change has got to come at a strategic policy level.
  • Better resources
    - Deaf child specialist social workers more common
    - Commitment to provide a service to Deaf children
    - Changes in local/regional organisation of services for Deaf children
    - Will Children's Trusts help?
  • Turn to a different study altogether that was more concerned with what happens next.
  • Focussed on improved information provision for families of newly diagnosed deaf children.

What parents can teach us - the dilemmas of information production

  • Provision of standard information for parents of deaf children (ES materials).
  • Evaluated with parent focus groups before the final version.
  • Lots of data on the details of content, layout, language etc.
  • Will focus on the dilemmas parents themselves identified in producing standard information and responding to diversity.

To what extent can the provision of impartial/unbiased information actually support parents to make choices? Having full information does not solve problem of how to make choices.

  • Should be stated explicitly
  • Tips provided on how to make choices
  • Warnings against particular agendas
  • Pros and cons questions that enable exploration
  • Deaf parent needs

To what extent should the provision of information encompass the setting of an attitude?

  • Neutral information welcomed but that too was an attitude;
  • Positive attitude/ approach helpful counterbalance;
  • How far should it be relentlessly positive?
  • Still wish to avoid 'government health warning' approach.

How much should information reflect reality contexts?

  • Information is not context free;
  • How do you learn to understand how deafness is understood?
  • Preparation for raging debates and not all being freely available;
  • Want to support new parents but not with a false sense of reality.

How much should information be a technical guide and how much should it be an emotional guide?

  • Not 'cuddly' enough;
  • Technical approach is what is needed;
  • How much should introductory and reference information prepare parents for the emotional experiences of having a deaf child?

The provision of information or the provision of what works for parents?
Technical explanations may bare little relationship to what parents discover works in reality. Case studies could feel patronising and alienating, for others they had importance in envisioning.
Hearing perspectives or deaf perspectives in what works ‘tips’?

Why is this study important?
Parents take a meta role - not just being consulted or responding

Once again reinforces issues of

  • Information style
  • Timing
  • Flexibility
  • Responsiveness

Moving on...

Informed choice project
More on information, understanding, knowledge, accessibility, choice and resourcing

Positive support project
More on what makes a difference and how after early identification

Early Support Evaluation
More on the circumstances in which agencies work best together and how from whose perspective.

Acknowledgements
Helen Tattersall
John Bamford
Kai Uus
Adrian Davis
Wendy McCracken
Hilary Sutherland
Clare Starmer
David Jones
Funders: DfES; DH; NDCS