Specialist support for those with Profound and Multiple Learning Disabilities (PMLD)

At ECL, customers with PMLD benefit greatly from mental stimulation and social interaction in a safe, sensory-friendly environment, with access to innovative digital technology and professional advice from our very own clinical team.

We pride ourselves on providing specialist support that is person-centred, flexible and creative to ensure that every person with PMLD can reach their full potential.

What does Profound and Multiple Learning Disabilities (PMLD) mean?

People with PMLD have profound intellectual and multiple disabilities, they may also have severe communication problems, extreme physical and/or sensory disabilities, and complex health needs. The combination of these needs can also affect behaviour, particularly if the right support is not in place.

Key to our service is enabling people with PMLD to access community groups and venues, providing opportunities to connect with the neighbourhood, extend social relationships and engage in new experiences. Community inclusion is vital to an improved sense of wellbeing as individuals feel more included and able to participate in ‘everyday life’.

At ECL we actively seek out local community groups and activities, aligned to the interests of the individual, and provide the right level of support to enable the person to participate and enjoy the experience.

Community activities are carefully chosen with the input of the individual and their families, to reflect each person’s interests and present learning and personal development opportunities, with the goal of achieving a more independent, fulfilled life.

With our own clinical team, ECL customers benefit from a multi-disciplinary approach, with expert advice on communication, mobility, sensory integration, positive behaviour support and specialist equipment.

Our clinical team will:

• Assess the unique needs, abilities and goals of the individual.
• Work with other clinicians, family members and wider services such as social care, to take a holistic approach to the person and ensure continuity and progression of existing care plans.
• Develop strategies and a tailored therapy plan to support the customer.
• Guide care staff on carrying out therapeutic interventions and teach best practices.
• Regularly review customer progress and adapt the therapy plan as required.

About our clinical team

ECL actively promote the use of technology to aid communication, interaction, sensory stimulation and progression.

Our PMLD customers benefit from interactive projector equipment to encourage stimulation and interaction, and communication apps on tablets to enable individuals to exercise choice and control over their lives.

We keep up to date with the latest technology developments, pilot new digital equipment and have even developed our own ‘Moment’ app which creates a log of a customer’s progression, brought to life with photos and videos of meaningful events that take place during the customer’s time with us, and where families and friends can register to see day by day Moments enjoyed by their loved ones.

We use digital technology such as ‘Alcove’ and smart devices to allow those unable to attend a session in person, to access and engage in the sessions remotely.

Providing on-going technology training to our staff is paramount. We work with schools and colleges to understand what devices and software are already being used, to ensure the technology is made available and our staff are trained and ready to support customers with it, before they enter our service.

We also work closely with families and carers to ensure continuity in the use of technology at home.

Supported by speech and language expertise, our staff will take the time to get to know a person, their means of communicating and find effective ways of interaction.

Methods of communication such as sign language, PECS and digital communication aids can be utilised to support a customer to express wishes and emotions, make choices and interact.

Specific communication interventions will be tailored to the needs of the individual but could include examples such as:

Objects of Reference

Using objects to support individuals who find it difficult to understand spoken words, signs, symbols or photographs. With systematic use these objects can represent a person, location, activity or event thus aiding the individual to understand their environment and communicate choices.

Intensive Interaction

Developing the fundamentals of communication such as the use and understanding of eye contact, facial expressions, how vocalisations lead to speech, and the role of turn taking in conversation. We have invested in an Intensive Interaction Co-ordinator to ensure all our services are able to deliver this support to our customers.

Communication Passports

The Communication Passport can describe topics a customer wishes to communicate about themselves to others, such as their most effective form of communication, their likes/dislikes, wants and needs. This is valuable for a customer who has little or no ability to speak and helps our staff to get to know the person and ensuring consistency in the way we work with people.

Many people with PMLD have a Sensory Processing Disorder which affects how the brain takes in and processes sensory information and can affect how the person responds to sights, sounds, smells, taste and touch. Lesser known senses are also often affected, these are Vestibular (movement and balance), Proprioception (body awareness) and Interoception (how our body feels inside).

The behaviour or response of someone with a Sensory Processing Disorder may not match the intensity of the stimulus. For example, they may not respond when you touch their skin lightly or they may cover their ears when they hear a sound. How someone processes sensory information will also effect their performance of tasks. For example, some people find music in the background provides sensory support, increasing their level of arousal so that they can be more productive. For others, background music creates a distraction, interrupting thinking and performance.

If sensory behaviours are not understood, they may impact on the ability of the person to concentrate, manage or cope with many everyday situations and may even be perceived as challenging behaviour.

At ECL, our staff, supported by the expertise of an Occupational Therapist work closely with a customer to understand their individual sensory needs, devise a sensory profile, which includes strategies and activities that can be used in everyday life, to support a customer with their sensory needs. The aim of this is to ensure the customer feels comfortable and secure in their environment, can function effectively, and be open to learning and socialisation.

Our specialist PMLD facilities feature state of the art sensory rooms and equipment, and the environment is designed to be sensory-friendly and adaptable to meet a customer’s sensory needs.

While some people with profound and multiple learning disabilities can mobilise without equipment or support, many use a wheelchair, others have difficulty with movement and are unable to control or vary their posture efficiently.

It is vital that people with physical needs have access to physiotherapy and occupational therapy, and their support staff receive training to enable them to manage their physical needs confidently on a day-to-day basis.

ECL staff, supported by Occupational Therapy and Physiotherapy specialists, devise individualised therapy plans for customers, utilising appropriate activities, space and equipment to improve muscle tone, posture, and increased mobility, thereby enabling greater participation in activities and an improved feeling of health and wellbeing.

The complex needs of someone with PMLD can mean that specific needs whether they are physical, mental, emotional or sensory, can go unnoticed or unmet, which may lead to seemingly ‘negative’ behaviour.

At ECL we follow a ‘Positive Behaviour’ approach treating the individual as a whole, combining the perspectives of other supporting professionals and focussing on teaching new skills rather than containing behaviours.

ECL provides the professional support of a Positive Behavioural Specialist to work with support staff to proactively understand behaviour and to identify and meet unmet needs.

PMLD customers may also have complex health needs, at ECL we have the expertise to assist with feeding, swallowing (dysphagia) and maintaining a healthy diet.

We have trained staff to provide personal care, manage health conditions such as epilepsy, and provide skilled support for ‘technology dependent’ customers needing oxygen, tube feeding or suctioning equipment.

To find out how we can provide a personalised, expert and life-enhancing experience for you loved one, contact ECL – we will be delighted to offer you further guidance and support. Phone us on 0333 013 5438 or email us at ECL.ContactCentre@essexcares.org.