University of Edinburgh
 

Working for Families: Achieving Best Outcomes for Children through Positive Partnerships

Presented on Saturday 7 March 2009

Gwen Carr

Partnership: Getting the balance right

"Partner: a sharer, an associate: one engaged with another in business: one who plays on the same side with another in a game..."

"Partnership: the state of being a partner: a contract between persons..."
(Chambers)

Essential ingredients:

  • Working closely together, with active participation and involvement
  • Sharing power, with parents leading
  • Complementary expertise
  • Negotiating and agreeing aims and process
  • Mutual trust and respect
(Early Support)

Early Support

"The Government's central initiative (national programme) to improve the way that services for young children with disabilities in England work together and with families"

A standard framework

  • Materials
  • Expectations
  • Relevant to all services, universal and targeted
  • Aiming to help children and families to lead 'ordinary lives'

The Family Partnership Model

  • A model that looks at 'helping' in an enabling way
  • Supporting not rescuing
  • Working with families as opposed to for or 'doing to'

Working with Parents in Partnership Hilton Davis and Lorraine Meltzer, 2007

  • www.earlysupport.org.uk

Construction process

construction process

The process of helping

  • Establishing and building a relationship
  • Helping the person explore their current situation
  • Helping them formulate a clearer understanding of situation
  • Establishing agreed aims and goals
  • Planning strategies
  • Supporting parents while the plans are implemented
  • Evaluating or reviewing the results
  • Ending

Characteristics of an effective partnership

  • Working closely together with active participation and involvement
  • Sharing power with parents leading
  • Complementary expertise
  • Agreeing aims and process
  • Negotiation
  • Mutual trust and respect
  • Openness and honesty
  • Clear communication

Partnership...

  • In information and knowledge sharing
  • In deciding the 'hows', 'wheres' and 'whens' of support
  • In assessing the family's needs and preferences
  • In setting outcomes and goals - long, medium and short term
  • In monitoring the child's development and planning and replanning support strategies
  • In sharing and acting on any concerns
  • In celebrating successes
  • In understanding and implementing Informed Choice

Definition

"Informed Choice means that families can make knowledgeable decisions, which reflect their own cultures, values and views. This should be based on full access to comprehensive, unbiased and evidence based information, about the full range of options."

Underpinning issues

  • Information, knowledge and understanding
  • Availability
  • Access to availability
  • Parents vary in their ability to make informed choices Informed Choice in families' terms
  • Does Informed Choice mean we offer the same to everyone?
  • Are all issues open to Informed Choice?
  • The effect of individual choice on the choices other people make
  • Parents as experts
  • Informed Choice is an active process
  • Equality of resourcing
  • Operational constraints
  • Resource strategy and philosophy
  • Training
  • Attitudes and values

Attitudes underpin our communication…

"Shortly after his birth a midwife told me that had she known she was carrying a child with Down's syndrome she would have had an abortion."

"Most people think babies with Down's syndrome are horrible, but I think they’re nice" (Nurse to mother of baby)

"My own GP ignored our daughter (who was beaming at him from her chair, aged 1 year). When I commented on her smile - still without looking at her, his reply was, Yes, they do tend to be happy."

"There won't be many like Luis when he's older because so many more people terminate these days."

"My son was initially refused spectacles because "he wouldn't need to see as well as other children"."

"Since moving to the UK, we have been repeatedly told that grommets are rarely inserted in 'Down's kids', as they never have normal hearing anyway."

"We get lots of false positives with this newborn hearing screening programme so it's great to find one that's actually deaf."

"They said it was my choice but it was pretty clear which one she thought was best."

"The letter said I had an appointment with the 'Ear Nose and Threat surgeon'. I thought it was a misprint... until I met him. It was awful"

"I'll always remember his words. It was brutal. I was crying and he just kept on... I'll never forget that day"

"Her words were right and I always remember - with gratitude - that she made me feel positive and gave me hope for H's future"

Attitudes and Values

  • Your own – family or professional?
  • Underpin how decisions are taken
  • Underpin our definition of outcomes
  • Respect, appropriate challenge, sharing of expertise, honesty and openness

Definition

  • An Informed Choice approach to service provision is one in which:
  • Service providers adopt open and flexible policies that effectively endorse a range of possibilities;
  • Services and professionals make no value judgements about one option over another and this stance is reflected in their strategic decision making and resourcing;
  • Families are supported to reach decisions in ways that are sensitive to their individual strengths, resources, needs and experience;
  • An informed choice is not seen as a one off decision but as an ongoing process.

What Parents Say They Want

  • A positive and encouraging attitude towards deafness
  • Provision of clear, accessible, balanced information
  • Support from other parents
  • To be listened to
  • To retain ownership of their child

"Parents have the right to expect 'professionals' to listen to them and to acknowledge their expertise as parents, to share information and be involved in the decision making process"
(Audit Commission recommendations, 2003)

The same across the pond...!

The Maine Educational Centre for the Deaf and Hard of Hearing Early Childhood and Family Services (Karen Hopkins, Vivian Mikhail, Lynn Schardel) The Double Edged Sword of Early Hearing Detection and Intervention (EHDI conference, New Orleans, Feb 08)

Advice from parents to professionals

  • LISTEN ... don't tell
  • THINK WITH FAMILIES ... not for them
  • GIVE INFORMATION ...don't insist they use it
  • DEVELOP OPTIONS ... not ultimatums
  • LOOK FOR THE POSITIVE ... not the negative
  • DON'T SAY "YOU’RE WRONG" ... determine why they feel they are right
  • CONGRATULATE SUCCESS ... don't ask for applause
  • FOLLOW THEIR AGENDA ... not yours
    (PJ McWilliam 1996 )

Thank You

Gwen Carr
Deputy Director Newborn Hearing Screening Programme
MRC Hearing & Communication Group
Ellen Wilkinson Building, 3rd Floor, A Block
University of Manchester Manchester
M13 9PL