Imagine living life as a person subjected to many forms of discrimination and inequalities. That is the life of many people with a learning disability.
Imagine then, being faced with further inequalities and disregard, or treated as someone to be pitied or to be eternally angelic – imagine what it may be like to have profound and multiple learning disabilities.
As that person to not have consistently good support and services, as recommended by Professor Jim Mansell (Raising Our Sights, 2010), is the sad reality for many in 2018.
Imagine not knowing that the average age of death in England today of someone with profound and multiple learning disabilities is 41 years of age (The Learning Disability Mortality Review Annual Report, 2017).
People with profound and multiple learning disabilities deserve better, so they individually can lead fulfilled and meaningful lives. The tide is turning, over the last two years there has been a resurgence of and increased passionate support for improved services, support and networking – this passion is within families, health/education/social care professionals, advocacy groups and others to clearly and loudly state that everyone with a profound and multiple learning disability deserve excellent support, as a child and as an adult.
This resurgence resulted in a truly collaborative approach to develop the ‘Supporting people with profound and multiple learning disabilities: Core & Essential Service Standards’ (Doukas et al, 2017), launched at the International Raising the Bar PMLD Conference in November 2017. Widely applauded and received by families and professionals in contact with people with profound and multiple learning disabilities, the Standards are focused on ensuring that all Commissioners and Providers of services work towards and within these standards to ensure consistently good standards for all organisations, and for all people supported.
Whilst the Standards have been launched, there continues to be much to be done to ensure families, commissioners, providers, regulators and others are aware of the standards and actively embed them, or encourage/pressure for these to be a prominent focus. Organisations will need to determine how they embed and self assess against the Standards. Through active engagement with the ‘Raising the Bar – COP for the PMLD care standards’ Facebook page, PMLD Link Journal and @PMLDLink Twitter Account, everyone is welcome to share ideas and good practice so that others can learn from this across the UK and more widely.
The resurgence is here to stay, driven by concern about quality of and length of life for people profound and multiple learning disabilities, and also positively because of what people with profound and multiple learning disabilities offer to society – the warmth, selflessness and often mindful appreciation of the present moment, and of course the beautiful interactions and love with shared time with someone with profound and multiple learning disabilities.
We continue, as a collaborative to seek to enhance support and standards, and actively encourage you to do likewise. ‘Raising the Bar’ PMLD Conference was significantly oversubscribed, indeed some delegates had to sit in the aisle to be enthralled by the range of inspirational speakers. Raising the Bar II, to be held at the University of Birmingham on 2nd November this year is sure to be even more popular and interesting with an increased capacity for seats and determination to make a difference to the lives of people with profound and multiple learning disabilities, please join us and share in that journey.
Details of how to secure attendance at Raising the Bar II are via https://www.eventbrite.co.uk/e/raising-the-bar-ii-national-pmld-conference-tickets-44284684684
Copies of the ‘Supporting people with profound and multiple learning disabilities: Core & Essential Service Standards’ (Doukas et al, 2017) can be accessed via http://www.pmldlink.org.uk/wp-content/uploads/2017/11/Standards-PMLD-h-web.pdf
Doukas, T et al. (2017). Supporting people with profound and multiple learning disabilities: Core & Essential Service Standards.
Mansell, J. (2010). Raising our sights; services for adults with profound intellectual and multiple disabilities. Kent: Tizard Centre
Authored by Thomas Doukas (Choice Support), Annie Fergusson (Family Carer/PMLD Link), Michael Fullerton (Care Management Group), Joanna Grace (Sensory Projects)
“Imagine being treated as someone to be pitied or to be eternally angelic.”
“People with profound and multiple learning disabilities deserve to lead fulfilled and meaningful lives”
Insert these pics with captions:
(Delegates at Raising the Bar, 2017 enjoying a first read of the Core & Essential Standards.
Thomas, Joanna, Michael and Annie celebrating the launch of the Standards
Raising the Bar