Mellow Futures

A parenting programme for parents with learning disabilities and/or difficulties

Lara Burnett

• Supports parents with a learning disability and learning difficulty

• Written under a project called Parent Pioneers, funded by the Department of Health over 3 years, 2012-2015

• A pilot is also running in Scotland, funded by Big Fund in Scotland

Mellow Futures

• To level the playing field for families where a mum to be or parent in the early months of parenting has a learning difficulty or a learning disability by providing early and accessible services

• To increase the support to families in their community

• Improve the knowledge and skills of early years services

Key aims

• Mencap’s definition of a learning disability is:

A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.

People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complex information and interact with other people.

• In the United Kingdom, about 1.5 million people have a learning disability

• This number is growing.

• Exact numbers of parents with learning disabilities is difficult to estimate- numbers vary between 25,000 and 250,000 in the UK.

(Dept of Health and Dept of Education and Skills 2007)

The numbers

Inherited or abnormal development of genes and chromosomes

Environmental factors before, during or after birth.

• Pre birth – genetic, chromosomes [Down’s syndrome], Fragile X syndrome, malnutrition, drugs, alcohol

• Peri-Natal – oxygen deprivation resulting in cerebral palsy, infections in the womb, premature birth

• Post Natal – illness, brain injury, meningitis, social deprivation

Causes

Learning Disability or Mental Illness?

A learning disability is from birth

It affects the ways you learn, communicate and understand

It cannot be treated medically and it cannot be cured

Mental illness can usually start around adolescence.

It affects the way you think, feel and behave.

It can be treated with therapy or drugs, which can help some people.

A learning disability means that someone may not be able to learn beyond their

ability regardless of the support and

adaptations available.

A learning difficulty is a specific problem

which may be overcome with support

and adaptations for learning to take place.

Examples of learning difficulties:

Autism (ASD) Aspergers Attention Deficit Disorder (ADD)

Attention Deficit Hyperactivity Disorder (ADHD) Dyslexia

Dyspraxia Dyscalculia

Learning Disability and Learning Difficulty

People with learning disabilities have an increased risk ofadditional challenges, such as:

• Health issues

• Poor socio-economical conditions

• Social Isolation

• Poor psychological wellbeing

Other issues

• Research has shown that 12.5% of care proceedings in the UK courts involved parents with LD. (Masson et al, 2008, McConnell et al, 2011)

• ‘One sixth of children subject to care proceedings have at least one parent with learning disabilities; rising to almost 25% if borderline learning difficulties are included; children are permanently placed away from home in 75% of these cases’ (Booth et al 2005)

The stats

• In many instances of concern, the risks to the children were related to unintentional neglect due to a lack of awareness of the child’s needs and or/availability of appropriate support. (Cleaver and Nicholson 2007)

• Parental learning disabilities treated as though they were a reliable indicator of parenting capacity – rather than focusing on actual parenting abilities and other external influences.

• Reasonable efforts are not always made to support parents with learning disabilities and their children as a family.

Why needed?

So…

• The support people with learning disabilities receive is crucial to their parenting success

• It needs to be early, planned, and pro-active

• Not reactive and provided under the context of a crisis

The project is being delivered in 2 Local Authority pilot sites:– London Borough of Islington– County of Northumberland

Mencap; intellectual disability expertise and project

management

Mellow Parenting; adapting parenting courses

Elfrida Society; running parents reference group

Norah Fry Research Centre; evaluating the project

Parent Pioneers

Mellow Bumps - helping mums to bond with their babies - helping mums to de-stress

Mellow Babies - supporting mums to be a parent. - discussing what is like being a parent and talking about topics such as healthy eating and safety

Volunteer family mentors - to help practice what was learnt on the course

- supporting families access local support and services

Mellow Futures

Making sure that parents with learning disabilities are centralto the development of the project:

• helping to adapt course material – giving their opinion on readability and how meaningful the content was for them

• training professionals and volunteer mentors

• helping write job descriptions for the volunteers

• testing out new and adapted sessions and research questions

• making a film about their experiences of being a parent

Parents leading practice

FILM

Adrian Brown Representative of the parents reference group

Parents leading practice

Parents leading practice

‘A learning disability is not a loving disability’

Clinical Experiences

Mellow Future Facilitation

Rachel Stephen

Bumps Babies

Connections

Challenges

What we did?

What workedWhat worked

What did we learn

More time

Preparation on friendship difficulties

Emotional Regulation and self soothing

Mellow Futures

Mentoring on the parenting programme

Raquib Ibrahim

• People with learning difficulties can often find it hard to process new information and learn new skills.

• However they are able to learn new information through repetition and routine.

• Mentors can support the parent by helping to practice and transfer these new skills in different settings.

Why use mentors

Build and maintain a good relationship with the parent

1.Receive weekly feedback from the group facilitators on topics covered and parents’ progress prior to meeting the parent.

2.Weekly meetings/home visits with the parent between groups to assist with the intervention homework exercise (“HAVE A GO!”) as well as provide any general support relating to the programme.

3.Feedbacks to facilitators how the meeting went and any other issues raised or discussed.

The role of a mentor

Mum feedback

• Mums were very engaging and seemed to really benefit from the mid-week catch up.

• The opportunity to talk over and ask questions about some of the course content really helped the mums understand and apply what was discussed.

• Seeing how the “HAVE A GO!” exercise can be applied at home really seemed to help with the learning (e.g. Bumps relaxation or Babies week 7; can you see the baby)

My experience

My own challenges

• Maintaining the boundaries of a Mellow Futures Mentor (want to fix everything).

• Bringing the relationship to an end.

• Ensuring partner/family doesn’t take over the “HAVE A GO!” exercise during the home visit.

My experience

• Being a mentor is a great opportunity for those looking to give something back to the community.

• Seeing the progress made in the family’s life week to week offers great satisfaction.

• Also offers a unique opportunity for those seeking to gain experience within this sector so they can go on and seek employment.

Summary and Conclusion

Evaluation of theMellow Futures Programme

Beth Tarleton

Evaluating the programme’s impact on: • Children’s outcomes and family situation• Appropriateness of programme• Impact of programme on the local context

• 2 sites in England, (4 in Scotland)• Focus today on English sites

• Methods used with parents overseen by Parents Expert group

• Easy information for parents, regular face to face interactions.

Babies’ outcomes/family situation• Interviews with mothers• Information from referrers• Analysis of mother/baby interactions • Mothers completion of:

– Adult well-being scale– Neo-natal perception inventory

• Collection of information about tracked group

Impact/benefits /appropriateness of programme (including benefits for volunteers)

• Information from referrers• Interviews :– Mum– Volunteers– Mellow Practitioners– Volunteer managers• Volunteer completion of WEMBS scale

Impact on local context• Pre and post interviews with managers and

commissioners• Evaluation of Mencap training for local

professionals• Information/interviews from/with referrers

Mothers’ situations at start• Living at home with full family support • Parental responsibility for baby with a family member

• Children previously removed, foster placement or

residential assessment at birth

• Concerns regarding the welfare of the majority of the babies.

• Drop outs – mental health issues, crises, not needed due to family support.

Mother’s views at the end of programmes •Increased confidence•Discussed understanding babies cues•Practical activities remembered including use of relaxation activities (in labour!) and torch/bell exercises•Lifestory work ‘upsetting’•Some activities seen as ‘babyish’.

•Emotional safety in group•Enjoyed being with other mums in similar situations.•Liked and trusted facilitators•Enjoyed time with mentor – help with at home activities and a ‘good chat’•‘Forced’ mums engaged.•Missed group when finished.

Mum’s social connections at end •North – referral to children’s centres

– Whatsapp/facebook contact•Urban

– On-going contact between some mums– Advocacy/Parents project at Elfrida

•Little unsupported use of new services•Call for on-going group in urban.

Referrers’ views on impact of the programmme

• Increased confidence in mothers• Increased understanding of baby• Increased social interaction (urban area)• Seen as independent/safe/nurturing

environment

Over positive view of situation?

Adaptation programme content and presentation

• Relationship based programme builds trust – Facilitators sharing own stories– Understanding and engaging with issues– Clear boundaries regarding sharing with other

professionals– Mothers felt safe to share.– Ensure facilitators not ‘teacher’

• Content similar to main programme– Easier words and more pictures

– Adapted by facilitators on weekly basis in response to mothers situations and shorter attention span content broken into smaller steps

– Content repeated over subsequent weeks

• Difficulties in getting through content in 1.5/2 hours.

• Support for facilitators required

Volunteer mentors•All but one mothers themselves•Give something back•Learning re complexity of mum’s situations•Experience for future careers/using skills once retired•Enjoying relationship – concern when mothers drop out that they have failed

• Supporting mums at home – discussion and ‘take home activity’– Urban site – attempts at community

engagement• Information about mums required?• Higher level of support required.

• Northern – huge distances to provide support.

Importance of children’s group workers– Mums ‘learnt to trust’ and leave child– Relationship with/support learning of mums– Feedback to facilitators– Feel valued and part of team (unlike other

programmes)

Impact of mum’s learning difficulty and context on programme•Crises become focus of session•‘Shock’ for mentors •Issues in relationships between mothers – part of the learning process?

•Difficulties locating mothers for programme – local lack of awareness

Issues with evaluative methodology• Mother’s fear of ‘nosey parkers’ especially when

involved in Child Protection • Mother’s difficulty with remembering details• Getting hold of referrers and regular changes of

key professionals in mothers’ lives.

• Difficulties return of scales by post.

Learning points•Content/facilitators/mentor/children’s group workers – all key•High level of clarity/communication required between all partners•Huge time commitment for all•Role suitable for volunteer with more support•More awareness raising referrals/local impact•On-going support required for the mothers•Mellow Futures positive part of complicated picture.