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Meeting the challenges of a growing older population with learning disabilities

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As the life expectancy of people with learning disabilites increases, care needs to adapt to changing needs. Dr Alison Rose-Quirie suggests how this shift can be planned for now.

alison rose quirie

alison rose quirie

Dr Alison Rose-Quirie

Currently people with a learning disability are 58 times more likely to die aged under 50 than people without a learning disability. However in the years ahead medical advances and better care will mean people with LD will live well into old age.

Ageing is also a major issue for people who are providing care for a loved one with LD.

Currently at least half of all adults with a learning disability live in the family home and 29,000 live with parents aged 70 or over, many of whom are too old or frail to continue in their caring role.

This is a large cohort of people who will need to be provided with support as their parents become unable to cope or go into care themselves. This shift needs to be planned for now as transition takes time to get right to avoid unnecessary placement breakdowns. Should we be designing family supported accommodation to avoid breaking up the family unit?

The demographic changes will bring unique challenges that we must prepare for or risk failing the LD community when they will arguably need additional support the most.

”Providing care and support for an individual with a learning disability requires real personalisation, planning and resource”

Providing care and support for an individual with a learning disability requires real personalisation, planning and resource, add to that the challenges of ageing and we will require much more sophisticated support solutions, principally suitable accommodation that will integrate assistive technology and appropriately trained staff.

As a sector we are already experiencing a severe shortage of good care staff - with this new demographic challenge, we will face a real crisis. People with LD continue to be stuck in inappropriate hospital settings, costing the NHS millions and denying the individual the person-centred care they really need. This will be magnified in the future if we do not take action now.

We will need dedicated older care services and facilities for the growing LD community. We cannot simply ‘lump’ these individuals in with people living with dementia – someone ageing with LD will face very particular challenges and unique models of care and skills will need to be developed for this group.

“Someone ageing with LD will face very particular challenges”

This highlights, yet again, one of the greatest challenges we face as a sector - parity of esteem. Until we can convince people that a career in the social care sector can be just as rewarding, fulfilling and progressive as one in healthcare then we will not attract the volume and quality of people we need to meet the current demand let alone the challenges of an ageing LD population.

Sadly many of those growing older are often still in hospitals and institutionalised. As this model is hopefully phased out under the Transforming Care agenda, over the coming years, these individuals will need to be supported to make the change.

Individual supported living may be too much of a leap for many so we should think creatively, why shouldn’t a group of friends be able to share a small home? We need to get away from thinking in terms of “pure residential” vs “pure supported living”, and find appropriate community accommodation which addresses individual needs – this may be a small group home or an individual/joint tenancy. The important thing is not where people live but the control and choice they have over where they live and how they live their life.

”Sadly many of those growing older are often still in hospitals and institutionalised”

An ageing population brings with it many challenges and perhaps none more so than for the most vulnerable members of our society.

If ever there was a reason for accelerating the integration of health and social care services in the UK then this it. The LD community will require simultaneous health and social care in their later years as diseases associated with old age set in – these services must be coordinated and linked up if we are to give the comprehensive person-centred care these people deserve.

Now is the time for us as a sector to come together with policy makers to identify all of the challenges that lie ahead so we can make appropriate plans to provide care and support for the LD community. We must not miss this opportunity to find the resources and the skills to guarantee a dignified old age for the people we support.

Dr Alison Rose-Quirie is CEO of Swanton Care and Community. She is on the Boards of Care England and the Housing and Support Alliance. She is a visiting chair for the CQC and has been selected as a Local Authority Peer Reviewer for Commissioning for Better Outcomes.

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