What are the Challenges in the System? [1]

How do children with Autism and/or Learning Disabilities described by their families using words like “loving, kind, caring, funny, gentle giant, sense of humour, makes me laugh” end up in crisis and within the setting of an Assessment and Treatment Unit?

What are the Challenges in the System?

We brought families together and asked them.  Today we look at four of the challenges faced by families.

  • Social Care & Local Services
  • Special Educational Needs Issues
  • Personalisation
  • Legal Support and Information

Social Care and local services

  • Austerity hitting families and the withdrawal of preventative services impacting on families and schoolsFamilies not eligible for direct payments and not fitting into the criteria for
  • Families not eligible for direct payments and not fitting into the criteria for social care
  • Lack of respite care
  • Feelings of being let down by social workers who are more driven by funding and resource implications rather than lives
  • Families not asking for help and fearful of having their children “taken off them” from social care – this can then build into a crisis
  • A complete lack of Carer’s Assessments needed to support the family emotionally and financially, especially when their loved ones are out of area.
  • Waiting lists and pressure on Child and Adult Mental Health Services
  • Vital family support services and behavioural support services cut

Recommendations

  • Personal Budgets to be a recommendation for families and support provided to make this happen including Personal Assistant recruitment
  • Person centred values foundations built into all training and used in practice

Special Educational Needs Issues

  • Families unaware of the importance of the Education, Health and Care Plans and lack of really good support to complete the plans
  • Practitioners unaware of how to complete plans
  • Educational needs not being assessed properly or at all
  • School unable to support the behaviour and to understand triggers of distress
  • Young person leaving education triggering distress
  • Lack of understanding and support regarding major transitions; for example, problems can be triggered when starting secondary school

Recommendations

  • Bringing in lessons from inclusive education – many are trapped in the system because the resources designed for rehabilitation of offenders are not accessible to people with learning disabilities.
  • Bring in experts from education to create differentiated materials for a wide range of learning and communication styles
  • Social communication seen as key early on
  • Include more than a brief intro to special educational needs to Teacher, TA and Senco Training.
  • Truly independent advocates for the family
  • Accountability for schools and LAs to come from the Government rather than the families.

Personalisation

  • Lack of person centred plans/health passports/positive behaviour plans
  • Decisions made by Responsible Clinicians who have behaviourist approaches, rather than more holistic and person-centred models of practice
  • Lack of personal budgets used as alternative and employing own staff not seen as a positive way forward.
  • Lack of support structures for people employing their own staff.

Recommendations

  • Training for staff in specialist units and commissioners by those with lived experience in person-centred thinking and values
  • Staff, professionals and families to understand what “good” looks like and not to accept the unacceptable
  • Families to have a voice in Integrated Personal Commissioning and Personal Health Budgets
  • Families supported to be proactive around co-ordinating a Personal Budget or Personal Health Budget paid as a direct payment to the person or nominated other. This should be a right to all people other than when there is a legal restriction
  • Personal Budgets/ personal health budgets to be in place for families and support provided to make this happen including Personal Assistant recruitment, Individual Service Funds, list of good practice providers
  • Training around Personal Health Budgets for families
  • Understanding that to have a personal health budget families need to already be in control, resilient, confident and empowered through peer support, networks, courses, good support around their mental health and well-being and for this to start as early as possible
  • Good practice models such as NHS England South and In Control need to be clearer and readily available

Legal support and information

  • Families unaware of their legal rights, alongside confusion regarding Mental Capacity, the Mental Health Act and Sectioning
  • Little legal support or advocacy, and lack of parents’ knowledge around Court of Protection, Deprivation of Liberty and other areas of the law. Parents not having access to lawyers or access to funds to employ lawyers when needed.
  • Parents not supported to challenge and unaware of their rights and entitlement.
  • A lack of awareness and discussion regarding alternative provision
  • Families unaware of what a section means and under the impression that their loved one will be in an Assessment Treatment Unit for 6 weeks only

Recommendations

  • One stop parent-led information hub of resources, information, signposting, events happening such as Justice Together (www.justicetogether.org.uk)
  • Keep families fully informed of their rights and any support available
  • Professionals need to keep up to date with government guidelines and legislation and practice within these
  • Legal information such as the new “Disabled Children and the Law” by Steve Broach, Luke Clements and Janet Read available to both professionals and parents
  • Codes of conduct for the various professionals need to be available easily to families.
  • Continuous professional development and working with families
  • A legal expert team to support families

Tomorrow we will be looking at the following challenges:

  • Parents seen as the problem
  • Fuller (non-medicalised) understanding of Learning Disability and Autism
  • Concern over the use of the Police and Criminal Justice System
  • Health and Emotional Wellbeing

Stronger Together:  This is a report from our weekend with families.  It talks about what families thought the issues were, it also looks at the possible solutions and recommendations from families.

Next Event:

We will be holding another event for families in June.  To find out more, click here

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