It’s tough when a disabled child becomes adult

Published by The Sun (17th September, 2014)

The birth of a child who turns out to have profound and complex disabilities is a shock. It sent me spiralling into depression that I later learned to be a form of grief.

My gorgeous girl began having small seizures when just a few weeks old. She was eventually diagnosed with the rare genetic condition CDKL5. She is unable to walk, talk or see.

Slowly you adjust your life, your home, your horizons. Then comes the struggle to find suitable schooling and respite, fighting officialdom supposed to help but seeming so often to makes life more fraught.

But the biggest shock comes when that child becomes an adult. For many families it is like tumbling over a cliff face again as those fragile support structures are shaken up.

Services that make life a little better often disappear. Instead, you discover the shameful paucity of adult services for people with disabilities.

Education can tail off . The pediatrician who provided such support stops overseeing health care, replaced by the lottery of adult provision, inexpert GPs and ever-changing consultants despite complex needs.

Funding often dries up for therapists helping with communication, postural care and mobility, even though they may have been seen as essential before their 18th birthday.

And things are getting worse as officials use cover of ‘inclusion’ to drive through cuts to frontline services – often while protecting their own overlapping layers of bureaucracy.

My daughter is now an adult aged 20 who loves swimming, music, yoga and feeling the wind in her face. She lives a contended life in the heart of her community, although still at home – but without our constant efforts we fear she would face isolation and boredom.

We have fought for her to enjoy a few of the things others her age take for granted. Why should this be a pipe dream for too many disabled adults?

Categorised in: Disability, home page