Transition from child to adult care for someone with severe learning disabilities

Learning disability nurses should appreciate the hurdles some parents have to negotiate

Viki Ainsworth describes the obstacles parents must negotiate when their child makes the transition to adult care

Viki Ainsworth with her daughter Tilly, who has learning disabilities.

Transition is a term that strikes fear into the heart of any parent or carer who is looking after someone with severe learning disabilities, not least because of the sheer number of transitions that need negotiating.

First, there is post-16 transition from school to college – this one should be relatively straightforward, as schools and colleges work closely together and all the arrangements still come under the education, health and care plan, so it’s lots of form filling, but comes with support from people who know how it works.

Then there is the transition from children’s to adult services. This one caught me out, which may seem odd given that I realised my daughter was turning 18, but our council have a 0-25 team and I assumed everything came under their remit. I was wrong.

Liable to pay for services

When your child turns 18 they are suddenly dropped from children’s services with no notice at all – which meant our direct payments for respite care disappeared.

Enquiries led to an assessment by the adult services finance team, who said the newly adult individual is now liable to pay for services, as though they’ve now miraculously decided your child is an adult who has started talking, working and earning a wage.

There was no sharing of information between the two departments and no advance notice of what was about to happen or the financial implications of moving into adult services.

Then there’s transition out of college and into social care. There is no joined up thinking on this either, as I found out last year while attempting to assist my daughter out of education and into her life as an adult out and about in the community.

Lack of clarity

I have three children. The middle one is Tilly, a gorgeous 21-year-old with severe learning disabilities. Tilly is non-verbal, doubly incontinent, undiagnosed and in need of 24-hour care for her own safety, but with a wicked giggle, a penchant for dispensing huge hugs at unexpected moments and an uncanny knack of getting her own way.

Our transition from education to social care involved handing over responsibility between Tilly’s college, an advisory group who were supposed to know what activities Tilly might be able to access post education but did not; and county, who wanted nothing to do with us until the last minute.

Tilly’s education, health and care plan was not renewed, but thankfully we got her care assessment done just before it expired and found a couple of suitable activities for her to attend post-college. But it was all done without any assistance, joined up thinking, guidance or clarity from any of the agencies involved.

Monumental anxiety

This created monumental amounts of anxiety for me, although thankfully Tilly was blissfully ignorant as she lives in the moment. We were speeding towards the edge of a cliff with no sign of a safety net below.

I can’t help thinking there’s a better way. We need clarity of process that cuts through all the well-meaning but ineffective blurb on websites.

Preparing for adulthood, person-centred care, transforming care and all the other aspirational mission statements are worthy goals, but without an identifiable path to meet those goals they are little use to anyone.

Our most vulnerable family members surely deserve better.

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