PMLD Response to Valuing People Now

The focus of PIMDA is what is happening in Australia. One of my key concerns is the lack of a cohesive body and a cohesive message for lobbying for people with PIMD in Australia.
In my reading this morning I revisited the report written in the UK by the PMLD Network in response to Valuing People Now. Valuing People is the government’s guiding document for services to people with intellectual disabilities in England and Wales. The PMLD Network submitted their concerns to the government in response to Valuing People Now outlining the particular considerations needed for making the vision a reality for people with profound intellectual and multiple disabilities. They were explicit in outlining the current situation and what needs to happen.
I strongly recommend looking at this report ( . I will however highlight some of the themes and calls for actions.

Including Everyone
– Understanding numbers and needs of people with PMLD
– Representations on boards and forums
– Recognition and standards response to health needs
– Real access to individual budgets of realistic cost amounts
– Priority for person centred planning
What people do
– Access to meaningful activities (not necessarily work)
– Day service access availability unless good alternatives are in place
– Skilled staff
– Planned, monitored and evaluated services with people with PIMD in mind
Better health
– Workforce able to address complex health needs
– Specialist expertise when needed
– Annual health checks and health action plans
– “Health care finance”
– Choice and control about where to live
– Trained staff in places where people want to live
– More funding for high quality, safe and supported housing
Advocacy and rights
– More advocacy for people with PMLD
– Representation and involvement in policy-making
Partnership with families
– Recognition of importance of family carers
– Access to good quality short breaks
People as local citizens
– Same rights recognition
– People being valued for who they are, beyond being “cared for”
– Good quality transitions
Improving workforce
– Skilled sustainable workforce
– Trained staff for health, communication, and behaviour needs
– Pay reflecting additional skills of staff


I have often been inspired by the actions occuring in the UK. In the UK the term PMLD (Profound and Multiple Learning Disability) is used. I frequently look to the UK when I want to learn more about a topic, get advice, or see lobbying actions. Here are a few great links in the UK: (this is a brilliant website)