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A hidden population

Despite improving life expectancy and quality of life in older age, people with learning disabilities still die earlier than the average population (13 years earlier for men and 20 years for women), Dr Nicki Ward from the University of Birmingham explained (see presentation).

Rarely do policies address the needs of people with learning disabilities in older age specifically, and existing policies often fall short of addressing their needs properly, Nicky pointed out. Planning services for this cohort is especially challenging, given that people with disabilities form a highly heterogeneous group, depending on the type and severity of disabilities.

At the meeting, 25 participants gathered into groups to work on four case studies involving people with various disabilities (autism, Down Syndrome, cerebral palsy, learning disabilities) who are facing additional challenges in older age, such as   dementia or diabetes. Participants drafted a care and support plan for each of the case studies, taking into account their social environments, how best to ensure their autonomy, and how to adapt services to their ageing process.

Social, physical and psychological needs

Care pathways should look at the mental and emotional wellbeing of older people with learning disabilities. This is the case especially for older people with severe learning difficulties who often have a reduced social network due to restricted opportunities to socialise, externally determined living situations, and the fact that they often do not have long-term partners and/or children.

Physical needs change for all of us when we get older, but there is a growing evidence base showing that certain disabilities are associated with secondary conditions such as earlier onset of dementia or arthritis. Other conditions may be spotted later because people with learning disabilities may not have access to the same screenings and prevention measures. Moreover, some preventable conditions, such as diabetes type 2, can be the result of shortcomings in services for people with disabilities earlier on in their lives.

Person-centred planning

A care plan for a person with a disability in older age should take into account their personal preferences with user involvement being the key to quality social services. Yet as some of our working group members emphasised, services often lack the financial resources or the flexibility and properly skilled employees to ensure the best person-centred support is provided.

Deinstitutionalisation is an essential prerequisite to providing individualised support, but it requires properly funded staff and organised alternatives.

Integrated services and shared case management as well as data collection and usage can help to organise services around the person’s needs. This can be done through multidisciplinary teams, supervised by a single professional or co-ordinated by various professionals, involving all other professionals working with that particular person (doctors, social workers, psychologists, care workers) as well as users, relatives and their wider social network. Practical, easy-read materials can also be developed to support service users in potentially stressful situations such as moving house or bereavement after a family member has passed away. Finally, technological solutions can enhance independence and improve information sharing.