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'Many of the parents with learning disabilities told me how fearful they were of the assessment process'

Sarah Lowe, founder of ParentAssess, explains why she set up the framework.

While it is commonplace to complain about the constraints within which we work, the timescales we have to adhere to, the frameworks we have to use, very few of us, when challenged with the ‘Well why don’t you do something about it?’ actually do go on and make change happen. But Sarah Lowe has done just that and created a new assessment framework.

While managing a parenting assessment team in a local authority, Sarah and her colleagues all experienced the same frustrations while assessing parents with learning disabilities. Sarah had felt the assessment framework used by most local authorities did not work for every parent and it was difficult to use. Some of the tools were rather ‘child like’ and risk and cultural issues were not covered sufficiently. She had thought for some time that changes should be made and like many assessors she found the need to modify the assessment model to meet the needs of the parents she was working with.

On speaking to her line manager, Sarah outlined her vision for a new framework and she was encouraged to make that vision a reality. So, in May 2016 she created ParentAssess.

“I knew there were areas which could be improved from the previous framework following years of working with people with learning disabilities. One of the things I’ve always made a priority in my practice is listening to the people I am working with about how the social work process feels. Many of the parents with learning disabilities told me how fearful they were of the assessment process, others felt like they were being treated like a child and some just did not understand the assessment process. I knew things had to change to make things work for these parents,” said Sarah.

Value base

Sarah has 30 years plus experience working with people with learning disabilities.  Her interest in social work started when she was a volunteer supporting holidays for people with disabilities as a teenager.

“In this more relaxed environment people would talk about what mattered to them, their struggles and the difference between positive and negative care experiences.” said Sarah.

Therefore, at the age of 16, Sarah left school to start a career in social care and worked in a residential unit for people with disabilities.  She had a brief period working with older people before joining a residential unit for people with learning disabilities who were coming out of large institutions. This unit provided rehabilitation and helped people to learn life skills, socialisation and manage within the community. “This role taught me a lot about how to support people to achieve positive change in their lives”.

Sarah worked there for eight years and was promoted before being seconded to complete her social work qualification which she gained in 1991. After qualifying, Sarah became a manager of a residential complex for children and adults with multiple disabilities. Sarah spent her 10 years there learning about the struggles that families experienced and helping people with learning disabilities to develop a level of independence against the backdrop of discrimination towards disabled people. She developed specialist care planning formats and lectured at the local university on disability issues.

A specialist by default

After 20 years of working in residential care Sarah wanted a new challenge. She therefore completed a MA in human resources management in order to develop her knowledge of investigatory processes in social care settings. Alongside her studies she began independent social work in family services and loved it. She went on to complete assessments and case work in several Local Authority Court Teams. She has since worked as an Independent Social Worker for nearly 20 years.

“Because there was so much on my CV related to working with children and adults with learning disabilities or physical disabilities, people often asked me to do assessments of parents with a learning disability and by default I became a specialist in the field. My previous experience was a real asset in terms of understanding how people learn and change, the pressures they face, the impact of disabilities on someone growing up and how it affects their education and life chances.”

“Sometimes people are wary of working with people with learning disabilities, but my background enabled me to work positively with parents with a wide range of learning and physical disabilities. I recognised these parents needed a different approach – an assessment that reflected an understanding of their specific needs. This goes beyond simply relying on visual aids, it’s about how we engage the parent in a meaningful way.”  she added.

There were changes in how the courts instructed assessments and back then the PAMS tool had become the go-to assessment. At that point, you didn’t have to be trained in PAMS but, since it has been mandatory so Sarah completed the PAMS training. 

“The training was useful in learning how to use the tools to input data into the software but I continued to rely heavily on my disability experience. I felt I needed to focus on risk and how to explain this to parents with cognitive difficulties. I had found that the parents I was being asked to assess had very complex histories and many had suffered trauma and neglect and it was these issues which were significantly impacting on their parenting.”

“Some of the parents I worked with were ok with the PAMS cartoons but many were not, and found them rather childlike and hard to assimilate to real life.  Many of the parents also found the tables used in PAMS difficult to navigate.  I’ve since found out that other assessors were getting similar responses.” explained Sarah.

“It led me to think could things be different?” she added.

Keeping it simple

Furthermore, I was often told the long assessment reports were overwhelming to parents with a learning disability. “I did addendum assessments and asked parents what they had changed, but found they hadn’t read the reports. Their solicitor might have talked them through it but they had not understood the recommendations. Again, this made me think – how can we make reports accessible?  

Sarah realised that in order to devise a framework which worked for parents and the professionals working in Family Proceedings she needed to pull together all the comments that she had received over the past 20 years. She decided to use this feedback to inform future practice and ascertain what should come next.

“The first thing is simplicity,” said Sarah. “Make things simple and clear, easy to understand – this makes the work we do accessible. It’s vital the parent understands the process.”

Sarah highlighted that having a parenting assessment is probably one of the most difficult things a parent would have to experience. “The parents get a knock on the door, and they have to invite someone in who is going to assess them and produce a report recommending whether or not they are capable of looking after their child. It is such an important report – yet so many parents I came across could not access the content The parent needs to understand what is expected of them and the outcome.”

“The basis to ParentAssess is understanding the parent’s perspective. How can we develop a rapport to enable them to get over any anxieties they may have about the assessment process? We want the parents to talk about their issues that they are experiencing in life. We aren’t there to judge, we are there to understand the issues and what can move things forward and support the person to be the best parent they can be.  It is a really skilful role the assessor takes on especially when the parent has a learning disability because the issues of risk and parenting capacity are often finely balanced.” explained Sarah.

Traffic light system

The framework incorporates a traffic light system and grades everything on red, amber and green. Parents are asked how they feel about their parenting using the red, amber, green system. They use the tools incorporated in the framework using red, amber and green and at the end of the assessment, areas of parenting are again rated red, amber and green for consistency. The tools are interactive and very clear and this encourages the parent to engage.

“Parents have said they understand the tables using this format and can easily see where they have strengths but also which areas need support or to change. I wanted to ensure they could understand the final report and information was presented in a format that did not overwhelm the parent.” said Sarah. “I therefore produced The Parent Report as part of ParentAssess. It is an abridged version of the final report and outlines three key outcomes:

- what you are doing well,

- what I am worried about

- what I am going to say to the court.

The Parent Report is clear, written in a simple format using words the parent will understand. This has received really positive feedback.”

There is software to accompany ParentAssess and like everything else it is simple and easy to use. “The software complements the assessment and makes generating the tables easier but it is optional. The framework has been designed so it can easily be updated to move with the times and reflect any legislative or policy changes.” Sarah adds.

‘We should not raise the bar for parents with learning disabilities’

Although the framework is based on the DOH assessment framework (2000), Sarah was mindful to also ensure the recommendations from any relevant case law were integrated.  She refers to Re D (A Child) (No 3) [2016] EWFC and A Local Authority v G (Parent with Learning Disability) [2017] EWFC B94 as providing useful guidance but also the Good Practice Guidance on working with parents with a learning disability issued by the Working Together with Parents Network and the Norah Fry Centre revised in September 2016.

“The important part of any framework is that it should not be raising the bar for people with learning disabilities and asking them questions that you would not ask a parent without learning disabilities,” said Sarah.  “We also need to accept that many parents may need support to provide parenting that is ‘good enough’ and assessment of the support network is vital. We need to acknowledge that some parents learn at different speeds and in different ways. Visual aids may be helpful but some parents need modelling or repetition.  An important part of working with a parent with a learning disability is to understand how that specific person functions cognitively. Assessors need to understand the nature and extent of a person’s difficulties and enable them to participate with the process.”

While ParentAssess transpired out of Sarah’s desire to drive practice for parents with learning disabilities forward, it has turned out to be a flexible framework which can be adapted to the parent being assessed.

  • It can be used with different levels of cognitive functioning including Autism.
  • ParentAssess can be adapted to consider different threshold concerns.
  • It can be used with parents from different cultures and it has been noted to work particularly well with parents from the Traveller community.

All tools are cross-cultural and can be adapted. All the pictures in the framework are of a ‘real thing’ that parents see in everyday life rather than cartoon animations.

How the pre-verbal child communicates

Sarah delivers training on the framework over 2 days and the courses are well attended by Independent Social Workers, local authority social workers, guardians, professionals working in mother and baby units, early help practitioners and leaving care teams.

“The training develops knowledge and skills in working with vulnerable parents. It supports best practice, helps people to understand the difficulties parents face while helping to keep the child as the focus of the assessment,” said Sarah.

“We look at what a pre-verbal child may tell us about their parenting and relationship with their parent and we listen to how older children may have experienced their parenting.  We train assessors in observation and use of video feedback, which is a very powerful, but underused tool in social work. We equip assessors with the skills and abilities to assess parents’ capacity to change, we help them to understand the tools and use them, how the framework all comes together through to the final report and outcomes,” added Sarah.

The training course was rolled out in 2019 and so far more than 300 people have been trained. Despite COVID restrictions, Sarah continued to offer the course online. “I was anxious about doing the training online as I like face-to-face interaction. However, it enabled people from all over the country and further afield to attend. We had course members from Scotland, Wales, the Isle of Man, St Helena, Romania and Bulgaria,” explained Sarah.

Following the course, Sarah offers post-training support free of charge meaning that if assessors require assistance when coming to put the framework into practice, Sarah, or one of the experienced assessors, is available to help and advise – a component which has been well received by the assessors. ParentAssess also has a Facebook page where assessors can join and discuss issues and there is also a LinkedIn page. Catch up meetings are held via Zoom on a frequent basis and there will be a talk on a specific topic, for example, parents with autism for half an hour, followed by an open discussion. Anyone who has completed the course can attend, which also provides Sarah with an ongoing feedback stream.

Obstacles

The birth of ParentAssess has not been plain sailing and Sarah describes it as “a labour of love”. Shortly after completing the framework, Sarah was involved in a relatively minor car crash but suffered post-concussive syndrome which affected her speech. As a result, she had to “slow things down a bit”. However, she insists her experience of post-concussive syndrome has provided her with a valuable insight into what parents may experience. “Parents cope with this kind of limitation on a daily basis and develop strategies to help them cope or mask the issue. They adapt and I too found I quickly learnt the words which were harder to articulate and so I used a different word and then it becomes automatic. It doesn’t mean the difficulty has gone but just you have learnt to live with it.”

Sarah was then offered a Disability Head of Service role and this also impacted on the amount of time she could dedicate to ParentAssess. “This role needed to be my focus but we were successful in moving from ‘Inadequate’ to ‘Good’ in 18 months.”.  But perhaps the most significant hurdle has been introducing ParentAssess to professionals where the well-established PAMS Assessment had become synonymous with assessing parents with learning disabilities.

If it was found a parent had a learning disability, local authorities and courts would automatically say ‘we need a PAMS assessment’ rather than ‘we need a specialist assessment framework for adults with learning disabilities’. The Legal Aid Agency had also included a section specifically referencing PAMS Assessments. However, in April 2020 Sarah approached the LAA and the expert fee guidance was amended from ‘PAMS’ to ‘specialist assessment’ which was a positive step forward.  “I think it’s positive to have a variety of assessment frameworks and to understand what each can offer in terms of analysis” Sarah said. 

Exceeding expectations

“The first ParentAssess assessment was put before the Family Courts in 2016 and the response was excellent. The parent, who had had local authority involvement for years, said it was the first time she had understood the issues. The parent’s barrister contacted me after the proceedings and said how impressed they were with the clarity of the report and tables. To date all the feedback has been positive which has been so encouraging” Sarah explained.

Since the training began, 100% of Assessors said they would recommend the course to a colleague, according to the feedback that Sarah has received. Similarly, 100% said the course met or exceeded their expectations.

“I have been bowled over by the positive feedback on the courses. Assessors seem to really like the flexibility within the framework and its simplicity.’

“It has taken a while to establish but we have seen a step change where solicitors are now increasingly asking for ParentAssess, particularly in the geographical areas we began in.  ParentAssess is now established in the East Midlands, North London, North-West, Yorkshire and the North East. There are ISWs across the country trained in ParentAssess and numerous Local Authorities are sending staff on the training,” said Sarah.

This is impressive considering it was only in July 2021 that Sarah began any type of marketing, so the interest had been purely based on word-of-mouth.

“I felt it was important to establish a network of available assessors before marketing the framework. There are now several large agencies including WillisPalmer who have a number of trained assessors so there is no reason why someone cannot access a ParentAssess assessor now.”

Footprint

It has to be remembered that the launch of ParentAssess has been against the backdrop of COVID which has had a massive impact on social work and social work practice.

“Going forwards, the plan is to roll out the training and when COVID hopefully settles we would like to return to face-to-face training. The software will also become cloud based which means assessors will be able to access it from any device and there will also be more tools available on there,” said Sarah.

“The fundamental aim is for practice in the assessment of parents with learning disabilities to really improve. There are so many issues which need to be addressed. We need more community support services for parents with learning disabilities which can provide bespoke parenting support. We need improved partnership working between Adult and Family Services to ensure these parents can access the help and support they need. We need to be better at helping the parents who are vulnerable to exploitation to understand and deal with risk. But we also need to consider those parents with Autism who are so often classified as a parent with a learning disability when in reality most have IQs either equal or above their peers. Parents with Autism are often misunderstood and thankfully ParentAssess also provides an effective framework to assess their parenting too” explained Sarah.

“After a long career in social work, I think you start to reflect on your work and I did find myself wanting to leave a small footprint behind. ParentAssess was created with the help of colleagues but also many parents I have worked with over the years and I hope their experiences will help to develop practice in the future” concludes Sarah.

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