Table of Contents
Appendix 1: K’s Story
Appendix 2: Shared Lives Mother-to-be arrangement case study
In 2020 the Scottish Government committed to thousands of care experienced children and adults to #keep the Promise.
It concluded ‘where children are safe in their families and feel loved they must stay – and families must be given support together to nurture that love and overcome the difficulties which get in the way’.
Parents with learning disabilities are more likely than any other group to have their children removed from their care: 40-60% of parents with learning disabilities have their children removed.
In response to this, and with funding from the Promise Partnership administered by the Corra Foundation, Shared Lives Plus is leading a project to develop Shared Lives services for parents with a learning disability, enabling them to care for their child and live within a Shared Lives carer’s family home.
In Shared Lives, a person who needs support moves into the Shared Lives carer’s own home either for short breaks or long-term as a place to settle and belong.
Key to the success of all arrangements is the careful recruitment and matching processes carried out by a regulated local Shared Lives scheme.
The careful matching helps ensure compatibility, trust, and the stability of the relationship. The service is flexible and can be a long-term arrangement or a stepping-stone to independent living.
This project has set out to establish a small number of Shared Lives arrangements with parents with learning disabilities. The aim is for the supported adult to retain parental responsibility for their child.
The role of the Shared Lives carer is not to care for the child, but to enable and support the parent to do so. As such, Shared Lives is also aligned with the good practice principle of providing ‘supported parenting’ (rather than ‘substituted parenting’, which supplants and replaces the parent).
The project also aims to explore the following questions:
This report is based on findings from:
There is an assumption that parents with learning disabilities will neglect or be unable to care for their children. They are more likely to live in poverty; be isolated and victimised; experience literacy and communication difficulties; have experienced poor models of parenting; have difficult relationship histories and not have access to accessible reproductive information and services.
On this basis alone, it is unsurprising that they are overrepresented in care proceedings. However, being viewed as “vulnerable and in need of care” can have a doubly negative effect, as it is assumed that their capacity to parent will be limited.
Despite these significant challenges, parents with a learning disability can and do parent well when provided with the appropriate support.
The Scottish Government’s learning disability strategy, the keys to life, recommend that the Guidelines for supporting parents with learning disabilities (SCLD) should form the basis for services to ensure that support is in place for the whole family and should be built on their strengths within the context of their own extended families and communities.
The findings from The Promise show the importance of ‘whole-family’ support and how this must sit at the centre of all social care responses particularly where there are additional vulnerabilities including parents living with learning disabilities.
It highlights the need for intensive wraparound support for families who may need more focussed and sustained support at any point in their children’s lives, particularly families “in and on the ‘edges’ of care”.
The aims of this support should be to: “keep families together and avoid children going into care; interrupt and address intergenerational cycles of trauma; and sustain meaningful and loving relationships”.
The Shared Lives supported parenting approach offers a way of putting into practice the aspirations of national policy and guidance towards parents with learning disabilities; to uphold theirs and their children’s rights to a stable and loving family life by offering timely and holistic family support.
“In terms of the existing policy landscape – the biggest barrier has been the dichotomy between support for children and adults so a system that focusses on family support is crucial.”
The aim of the Supported Parenting project is to learn from existing parenting arrangements delivered through Shared Lives across the UK and underpinned by the production of good practice guidelines and opportunities for shared learning, put into practice what works best in supporting parents with learning disabilities to parent well and safely.
While the group of parents involved in the pilot is a small one, the impact has been significant for those families. Those being supported have established strong, trusting relationships with their Shared Lives carers and have been helped to develop their own understanding, skills, and confidence in themselves as parents.
They have also been supported to engage with other services and build relationships in their communities enhancing their own confidence and participation in community life along the way.
Those supporting and making decisions for the parents involved are unanimous in their belief that parents and their children benefit considerably, often despite systemic barriers and difficulties that get in the way.
These barriers can include a lack of understanding of the issues for parents with learning disabilities, leading at times to parents being judged and held to a higher standard than their peers; a failure to take a ‘whole-family’ approach leading to a significant disconnect between child and adult services with poor communication and wrangles over funding; and a lack of planning and early support compounding crisis-driven and often costly responses.
There is a good deal of potential for the sustainability and replicability of the approach despite some of the challenges and difficulties that respondents talked about.
Shared Lives parenting arrangements offer scope to implement more recent national policy frameworks relating to support services for adults and children that can improve outcomes by addressing some of the systemic problems being experienced by those working in the social care sector.
The existing Shared Lives infrastructure provides a useful foundation to build on the approach, share expertise and directly meet the needs of parents with learning disabilities.
Parents involved in the project had all, at various times, expressed anxiety about having their children removed and a wariness about engaging with statutory services. They reported feeling at times hopeless and isolated prior to being involved with Shared Lives.
While this fear remains to varying degrees, they have been supported by their carers to establish more trusting relationships, to connect with their own community and to begin to have a voice about how services should best respond to their needs.
Shared Lives providers can take a key role in facilitating adult and children’s services to foster joint working and a more holistic family approach.
Opportunities for relevant stakeholders to come together to explore how to achieve this, along with the development of guidance for service providers, have been warmly welcomed.
Despite budget constraints and the disconnect between children’s and adult services, there is a genuine desire to provide the right support for this group at an earlier stage, as well as to uphold their rights.
All of those interviewed were positive about developing the approach in Scotland despite the challenges and difficulties of trying to do so within the current social care context where services’ responses are often crisis-driven rather than planned at an early stage. Many expressed frustrations around the lack of planning, commissioning, and delivery of services for families that can lead to parents and their children falling through the cracks.
They acknowledged that a lack of understanding of the issues for parents with learning disabilities and the risk-driven approach to providing support meant that they were either over-scrutinised and held to a higher standard of parenting, or that there was a dearth of support available, with adult and children’s service not being able to agree who should be responsible for funding.
They saw the potential for the Shared Lives Supported Parenting approach to enhance joint working, particularly between adult and children’s services, uphold the rights of parents and to offer support at an earlier stage, thereby avoiding costly crisis-driven responses further down the line.
Those responding were unanimous in their desire for a whole-system approach that offered holistic family support.
The Scottish Government has expressed a strong commitment to services that are designed and delivered locally and that have equality, dignity, and human rights at their heart.
The Independent Review of Adult Social Care in Scotland states that “Investment in alternative social care support models should prioritise approaches that enable people to stay in their own homes and communities, to maintain and develop rich social connections and to exercise as much autonomy as possible in decisions about their lives.” It further highlights the need for a paradigm shift towards a human rights-based approach that is preventative and anticipatory, collaborative, and relationship-based.
Despite this, there remains a profound disconnect between progressive policy and good practice guidance and the reality of services on the ground that do not meet the needs of parents with learning disabilities.
This is often exacerbated by: a lack of understanding and acknowledgment of what a learning disability is on the part of services; a disconnect between children and adult services; lack of advocacy and attention to the rights of parents and their children; a deficit-based approach that does not recognise and build on the strengths and attributes of parents in need of support.
Respondents consistently drew attention to the disconnect between policy and guidance and how these are translated to services on the ground. They highlighted the barriers and difficulties that a lack of joint working particularly between adult and children’s services creates for families.
They believe the Shared Lives Supported Parenting approach can help transform outcomes for parents with learning disabilities.
It can do so by offering more personalised care and support that is of a higher quality and that offers significant cost savings.
It can also act as an important conduit between services by coordinating and supporting a holistic family support approach in line with national policy and practice guidance.
Shared Lives is naturally aligned with established principles of good practice when working with parents with a learning disability. The Scottish Good Practice Guidelines for Supporting Parents with a Learning Disability (SCLD, 2015) specifies five key features:
These features align with the 10 principles of intensive family support as laid out in The Promise which also underlines the need for “intensive” wraparound family support for families who may need more focussed and sustained support at any point in their children’s lives, particularly families “in and on the ‘edges’ of care”. Plan-21-24
There is a raft of legislation that supports the right to a family life, for all individuals across the UK:
Under the Human Rights Act 1998, everyone has the right to marry and have children (Article 12); get support for your right to private and family life (Article 8); and be involved in decisions and important meetings about your child.
The Equality Act 2010 requires public authorities to promote equality of opportunity for disabled people. Where a parent has a learning disability, legislation places a duty on local authorities to assess their needs and, where eligible, provide services.
Local councils have a duty under the Social Work (Scotland) Act 1968 to assess a person’s community care needs and decide whether to provide any services. Part 12 of the Children and Young People (Scotland) Act (2014) places a duty on local areas to provide supported parenting where a child is at risk of being removed from their parent’s care.
The Shared Lives Supported Parenting pilot aims to build on the learning from a similar parenting project developed in England funded by the Rayne Foundation. The English project was able to report on a range of positive outcomes for the families they have supported, including:
The small group of parents involved in the pilot are experiencing similar outcomes.
All parents involved have made considerable progress, gained confidence, forged meaningful relationships, and strengthened their community ties because of the support they have received.
This has been achieved despite what have been described by respondents as systemic barriers towards support and good outcomes.
One of the Shared Lives carers interviewed has had a mother and child living with her for ten years and believes earlier intervention and a proper assessment of both the mother and child’s needs would have made a significant difference and outcomes could have been better, particularly for the child in this instance.
The opportunity to work alongside the carer supporting both mother and child was missed, and she was left to do this without much support.
Another of the parents being supported through Shared Lives, and who went to live with her carer whilst pregnant, is successfully parenting her child now aged 22 months and is on the cusp of achieving her own tenancy. This despite the systemic barriers and hurdles both she and her carer feel they have had to navigate (see case study).
In this instance it helped to allay social work fears that the carer was dual registered as both a foster carer and a Shared Lives carer, but both felt under intense scrutiny at the beginning, the effects of which are still being felt.
It is not necessary for Shared Lives carers to be dual registered (unless Parental Responsibility has been removed). What is more important is the quality of the relationship between the carer and parent and their ability to create the right conditions for a trusting relationship that lets them grow confidence in their parenting abilities. The Scottish Child Law Centre has developed legal guidance for Shared Lives parenting arrangements which provide a helpful resource to support this kind of decision-making.
“There was initially a three-month parental assessment which lasted much longer than expected.
K is doing a fantastic job with her baby. This is down to everyone's help and support to both K and ourselves. The next step is independence with support.”
The pilot has also created the potential for the voices of parents with learning disabilities to be heard in a way that can directly influence the shape and delivery of services.
There are excellent signs of parents being supported to speak for themselves and engage meaningfully in their own communities. In many cases, a sense of hopelessness, helplessness and disempowerment has given way to the ability to make a difference both locally and nationally.
The success of this placement has paved the way for another young mother to be to make a similar transition. In this instance the carer was also a foster carer previously, which seems to be an effective way of reassuring social services that the support on offer is safe.
As the pilot progresses it is hoped that confidence in the approach will grow and social services will be more focussed on the quality of relationships on offer, regardless of whether carers have foster care experience.
This young woman has been supported to plan for the arrival of her baby and for her future and is expected to enjoy full parental rights. Both mother-to-be and her carer have expressed how well this arrangement is working and seem to be very clear about roles in terms of her being supported to parent her own child in her own way.
This is no different to the support that any new mother would need.
The ongoing learning from the pilot and the establishment of a steering group has also created opportunities for some important discussions for those involved in the provision and commissioning of adult and child services and the potential for a wider ‘ripple effect’ as learning is shared, and services are supported to adopt the approach by Shared Lives Plus.
This is invaluable as the issues being grappled with are challenging and there is some way to go before the aspirations of national policy and guidelines relating to adult and children’s services and holistic family support are successfully implemented on the ground.
Interviews took place with the following stakeholders:
Respondents were broadly enthusiastic and committed to the approach despite some concerns about systemic failures that need to be addressed and that can be a significant barrier to good outcomes for parents living with learning disabilities. Key themes emerging from discussions and interviews included:
“Anyone who has experience of the model would get behind it. If the service is backed up with guidance, scrutiny monitoring then people would get behind it.”
“Potentially brilliant despite challenges of dynamics and potential pitfalls. Benefits do outweigh the alternatives (children being removed unnecessarily at times) but does raise questions of sustainability.
Biggest barriers have been dichotomy between support for children and adults so a system that focusses on family support is crucial.”
For those delivering the Shared Lives approach, they welcomed the development of guidance for the Scottish context and the opportunity to discuss with peers some of the difficult issues that get in the way of providing adequate support for parents living with learning disabilities.
There was appreciation of the role Shared Lives coordinators play in terms of facilitating learning and coordinating services for the families and carers they support.
There are currently 15 Shared Lives schemes in Scotland, covering about two thirds of the country; they are run by the local authority or one of three third sector organisations: Quarriers, Cornerstone and The Richmond Fellowship.
The local authority schemes account for about 70% of the number of people supported, but the third sector providers cover a larger geographical area as they are not tied to any one authority boundary.
The people supported have a mix of needs, about 50% live with autism or a learning disability, 25% with dementia or frailty associated with old age, and the remaining a mix of physical disabilities, and people transitioning from the care system.
As there are already parents (or those planning to become parents) within these groups who are being supported through Shared Lives schemes, the infrastructure to scale the approach is already in place. This includes well-established expertise, knowledge and collaborative working across the health and social care sector with both statutory and third sector organisations.
Interviews and discussions held with some of those involved in the delivery of services showed a genuine desire, despite the constraints of budgets, thresholds and the disconnect between children’s and adult services, to improve conditions for this group as well as to uphold their rights. Successful stories emphasised good quality relationships because those being supported felt respected, trusted, and treated with fairness.
A respondent from North Ayrshire Health and Social Care Team said:
“The opportunity to work with Shared Lives in the context of child protection is like real gold. I would like to see this become available and be used more when things are challenging for adults with learning disabilities.
The provision of budgets can often lead to more conservative standpoints rather than thinking more expansively about what would work better.
Professionals may need to be braver to counter this and take more risks and explore different ways of doing things. Focus on outcomes matched against budgets can be counterproductive.”
All respondents were unequivocal about the benefits of the Shared Lives arrangements despite the many hurdles and difficulties that each experienced. They reported good outcomes for parents and their children.
“There is still no real understanding and acknowledgement of what a learning disability is.
The response seems to be a pervading sense of people either needing care or needing to be restricted in some way.”
One respondent discussed the dual aspect of women with learning disabilities coming to the attention of other agencies because of their relationships which are often viewed as being coercive and abusive. In these circumstances it may be easier for social work to remove children than to support families.
This respondent was aware of multiple cases in which parents were not informed prior to removal of their children and in which parents signed away parental rights without understanding what they were doing.
Advocacy is consistently mentioned by parents as being the most important feature of support for them. However, it can be very difficult for parents to access lawyers and solicitors with a good understanding of their needs. Procedures and paperwork can be bewildering and are not clear and accessible.
Parents need support that meets them where they are at and that is clearly explained.
“There are real benefits to the Shared Lives model - because of the support, being in a family environment. However, it can also be another 'eye' of the state; another form of monitoring.”
“Sometimes, it’s the inability of services to be flexible/imaginative, or the limitations in what is available, that contributes to the complexity of an individual’s situation.”
The main stressors seem to come from statutory agencies that need some convincing to allow Shared Lives Parenting arrangements to go ahead.
In the case of one of the parents, the involvement during the first months of the baby’s life were felt to be incredibly intrusive (daily monitoring of parenting and carer), which put additional stress on mother/baby at a time when most new parents would need maximum support and minimum stress.
The level of monitoring meant that the usual patterns for a new parent of trying to sleep between feeds was severely disruptive.
In this instance, the parent’s carer felt that she was also under considerable scrutiny and surveillance, which made it difficult to reassure the parent who already felt fearful and distrustful of social work. She continues to worry about having her child removed despite the progress she has made and her clear ability to parent exceptionally well.
This is a clear example of where system responses can undermine confidence and create unnecessary fear.
“K is parenting exceptionally well and is a loving and engaged mother.
Both K and her Shared Lives carer have had to work incredibly hard to convince social work that this arrangement should go ahead.”
“She has nailed the engagement process - keeps in touch, sends texts, listens to advice that's given.
The majority of this has come from the Shared Lives Coordinator and carer going over and over the advice.
This has been hugely beneficial - without this we would have gone down the permanence route and would have found ourselves revisiting the same pattern as before - i.e., the removal of a child into care/adoption.”
“As a Children and Families social worker, we’re always looking for a creative resource as there are not always the resources available. This can result in child becoming accommodated.
Not a lot of early intervention - usual route where there are concerns is to accommodate child and then try to get the parent to move on from there. Contact then takes place in an unnatural way where facilities are not always conducive to building relationships.
Feels a bit backwards - why not put support in at the start and work from there.
Makes sense for all young vulnerable parents to get the support they need at an early stage not just those with a learning disability.”
There are compelling reasons to adopt the Shared Lives Supported Parenting approach in Scotland despite the challenges that respondents have identified and continue to grapple with. The approach is a robust one that meets the needs of parents, upholds their rights and is cost-effective.
The main barriers are those that have been identified by the by the Independent Care Review regarding crisis-driven support, as opposed to support that is provided where and when it is needed and that is holistic in terms of looking at the needs of the whole family.
The disconnect between statutory and third sector provision that is community based and the power imbalance this can create are also significant barriers.
Despite these difficulties, the commitment to #Keeping the Promise is strong. Parents with learning difficulties, however, are often the most disenfranchised group and are at most risk of not being supported appropriately.
Despite this, there is good evidence to show that an informed approach that is person-centred, relationship-based and that takes a proactive rather than crisis-driven approach towards support can produce better outcomes for families while also being cost-effective.
Those involved in the pilot – either in its delivery or as supportive and interested stakeholders, showed a great deal of enthusiasm and buy-in despite an acknowledgement of the systemic failures and difficulties experienced within the social care sector.
There is more hesitancy around the statutory agencies in terms of what needs to change system-wide to achieve better outcomes for this group, but an appreciation and understanding of what this model can offer to contribute to #Keeping the Promise.
Crucially, the approach allows for the possibility to allow parents to speak for themselves. Their sense of agency can improve, and the sustainability of change is evident.
Shared Lives arrangements for parents with learning disabilities creates the conditions for them to develop a sense of agency, moving from feeling hopeless, helpless, and disempowered into making a difference for themselves and their peers locally and nationally.
“The Promise states that ‘where children are safe in their families and feel loved, they must stay – and families must be given support together to nurture that love and overcome the difficulties that get in the way.’ Research tells us that around half of children born to parents with a learning disability, grow up away from their family due to perceived risk to the child.
The Shared Lives Parenting Project offers a unique approach to providing whole family support. It ensures that children grow up with their family, protecting vital connections, whilst offering support to help parents overcome difficulties.
The Promise is looking for Scotland to come up with innovative ways to ensure that each and every child have what they need to grow and thrive. The Shared Lives Parenting project has done just this.
This project, supported by The Promise Scotland, has partnered with providers and parents with learning disabilities to see if a different approach is possible.
This evaluation report evidences not only the viability but scalability of this approach which could be key in changing our approach to offering whole family support across Scotland.”
K, 26 years old, 25 weeks pregnant and with a learning difficulty was referred to Cornerstone Shared Lives from Social Work.
K had previously had a child aged 19 but concerns led to the baby being taken into foster care and subsequently adopted. The social worker and her advocate who were both involved initially believed that there were many inaccuracies and assumptions made that led to this decision and sad outcome.
During her more recent pregnancy, the young woman was in a difficult situation, she had run up some debts, was threatened with eviction due to the arrears, and was non-engaging with services.
She was fearful and living in the threat of losing another baby.
The learning disabilities Social Worker had established a good working relationship with the young mum and wanted to ensure she had every opportunity to keep her baby in her care this time.
The young woman agreed to move into the carer’s home and a Shared Lives arrangement.
This placement was out of her local authority area but was considered a good move by all involved including the young mother. She received support from the Learning Disability and Advocacy services who both worked closely with her, and all connected with Cornerstone’s family placement project.
In the initial three months of the arrangement, she built a positive relationship with the carer who supported her to give up her tenancy, maximise her benefits, registering with local GP and health services, and attend all appointments. The carer also supported her to address her debts.
This has not been an easy journey; the young mother had periods when she felt completely overwhelmed, these were generally periods when the plans were delayed, a change in workers, or when she still felt that what she was doing was not good enough.
However, throughout the last 12 months, she has built up her time alone with the baby; initially from short walks locally and attending groups to building up to overnights at home while the carers went to their caravan in Ayr which has gone well.
Now two years on she is ready and looking to move on to her tenancy. She has paid off all her debts over the last 18 months and is better at budgeting.
She plans for special events like birthdays and Christmas and is always organised well in advance, getting great enjoyment from these experiences. Her savings are growing, and she intends to use these to furnish her tenancy when she moves out.
“Without the innovative Parent and Child support package, and input from Independent Advocacy plus other positive input, it is most likely Mum’s voice would be unheard, and we would have a ‘cared for child’, with a devastated, damaged, and bereft young woman rather than a happy secure family unit.”
In October 2022, one of the young adults supported contacted her link worker to advise she was pregnant. She had just been to her GP and had this confirmed with a due date of mid-May 2023.
This 31year old has been supported within Shared Lives via Cornerstone for several years, she has a learning difficulty that requires some practical and emotional support.
This mother-to-be had been in a relationship with her fiancé, who lives in another Shared Lives arrangement, for 5 years. She is very able and keen to become a mother. She has chosen to remain in her current placement for as long as possible at this stage. Her partner is moving into his supported accommodation in April.
The safeguarding midwife was allocated to the young mother in January, but this has since been passed onto the child protection team to conduct a risk assessment and look at the support required going forward.
She was advised that this was being passed over to the Child Protection team over the phone which she found very distressing and overwhelming; worried about the baby being removed even with reassurances given.
