Family Rights – What’s not working?

At our Family Rights, Citizenship and Mental Capacity Act workshop on 1 July, we brought together several parents to chat about Family Rights. We asked these parents what was and wasn’t working; these are their replies:

What’s not working

• NHS – from 17yrs up – being in adult wards and parents not welcomed.
• Welfare Deputy meant could not negotiate with the ward re private room. Had to involve a solicitor so that relatives could stay
• Lack of training around understanding of Mental Capacity
• Referral happened to psychologist without parents’ consent
• “No choice, we had to take a personal budget”- without high quality information on how they work
• Local authorities going backwards not forwards
• Social Workers with little experience and non-social workers doing Resource Allocation System assessments
• No Person Centred agenda – it costs too much £
• Closing Day Centres without alternatives
• Ignoring families
• Being made to feel guilty supporting my daughter into Independent Living
• Having control taken away
• Being dictated to by Local Authorities
• Painful battles – fighting schools, social worker and the systems.
• We were “alone” and it became about him and excluded what we thought or knew he needed.
• Injustice
• Family exclusion
• System that is totalitarian
• Tin pot tribunals
• Life sentences imposed
• Moving family further and further away
• Social work driven
• Misapplication of the MCA
• People find it difficult to hear what we have to say
• People have no concept of Mental Capacity Act and what it means – including big players like the CQC
• Some people choose to ignore MCA
• People not following the Act
• Do professionals leave an audit trail to show decision making processes?
• Big networks and lots of connections:
• Voice of mum/best interest/safeguarding/right to make poor choices – “you can’t go out looking like that”
• People with some capacity – complicated and needs thought and planning around decision making
• Finding the balance – choice/best interest
• Choices often made too informally – too quickly
• Worried that in the future the subtleties of MCA will be lost
• Worried that people get “kidnapped” by people/professionals who understand the MCA
• Choices around food/clothes – lack of common sense – support staff scared of MCA
• Problem if one parent “gets it” and the other parent “does not”
• People feeling isolated about MCA – and not knowing about  all the good resources and information available for free

What is Working Well?

• Communication Forums with a group approach
• Connecting – supporting families
• Information and learning together for families
• Coming up with our own decision making agreement
• Table of major decisions he can make eg moving house
• Daily decision making “Tom Team Handbook” used for induction.
• About Me – written by Tom
• Regular team meetings
• Circles
• Social Worker actually thanked us for helping
• Family stories can help professionals understand without us having to battle
• Families being informed about rights
• Families having a voice
• Respecting families – respecting our choices – knowing what is “silly stuff” and mounting “small things” that add up to quite major issues
• Rebalancing voice and power between families and the system

What else did parents share with us at the workshop?

Bringing Us Together
1 July workshop
Family Rights, Citizenship
& Mental Capacity Act

Resources

At the workshop, parents discussed various resources that they had found useful.  We have collated all of these, together with the slides from our workshop, for families to view and download.

How do we get more of What’s Working Well and less of What’s Not Working?

Over the years there have been many agendas that have brought about change, many families involved all over the country really working hard to make a difference. We acknowledge the energy and commitment by many many people from parent support groups, forums, practitioners and organisations. We know, however, that we still have a lot of progress to make and some families and disabled people feel we are moving backwards.

• How have you managed to make things work well for you and your family?
• What have you tried, without success?
• Can you relate to any of the comments from families above?
  •     How did it make you feel to read their comments?
• Are you involved with other groups trying to address this?
  •     What have they learned?
  •     What have they tried?
  •     What successes have they had?

Debs Aspland

Mum to three great kids, each with a different SEN.
Transplanted from the NW to the SE.
Co-founder and Director of Bringing Us Together