At the end of a week that saw our Labour Party government announce plans to strip some disabled people of Personal Independence Payment and entitlements under Universal Credit, we have World Down’s Syndrome Day on Friday 21 March. A day dedicated to celebrating the lives of people living with Down’s Syndrome; people like my daughter Betsy.
As a disabled person myself I am scared about how I’m going to survive after the DWP reforms.
But as the mother of a disabled child I am terrified. For her.
What kind of world are disabled children growing up in?
This is the world she is growing up into. In a country that punishes people for being disabled, forcing us into poverty. Any parent of a disabled child will tell you that their greatest fear is dying and leaving their vulnerable child without care and advocacy. That fear has never been so extreme as it is right now, because nobody else is going to advocate for her; write the letters; attend the meetings, and lodge the tribunals – alongside providing 24/7 care for her.
Down’s Syndrome is a genetic condition caused by the body having an extra copy of chromosome 21. It expresses differently in every person, causing a wide range of health conditions and always comes with learning disability.
My daughter is medically complex, with multiple serious health conditions that means she needs 1:1 care at all times. She frequently needs hospital treatment. Learning disability can be caused by many different factors, but in my daughter’s case, it is because she has Down’s Syndrome.
She cannot advocate for herself. I am her voice.
The UK is a country that does not have the infrastructure and funding in place to ensure that children with learning disabilities have access to the same rights as typical children. For my daughter’s entire life I have had to fight to get her the support she needs, in every arena. Education. Healthcare. Enrichment.
Yet sometimes there is literally nothing in place to fight for, such is the black hole of support provided by our government.
So to hear that, despite having education, health care, and social care systems that fail disabled children, they are expected to magically grow up to be able to work and support themselves is absurd. The government aren’t even giving children with SEND a fighting chance.
The state is failing us at every turn
To start at the beginning. Early intervention in nursery education for children with SEND is virtually non existent. Even for my daughter, who was born with a physically-evident disability, was denied extra help by our local government. So I fought. Wrote the complaint. Submitted an appeal.
Then we reach school age. Hundreds of thousands of children with SEND cannot access mainstream education. It’s just not designed to meet the sensory and physical needs of many children. That would require huge investment from our government, which is clearly not forthcoming. To have the right to attend a specialist provision children need a Education Health and Care Plan. A legal document that gives a child the right to the support they need. Whether that be a member of staff with them at all times, Speech and Language Therapy, or anything else they need. Even getting an assessment for a child to have an EHCP is gold dust. Betsy was denied an assessment for her EHCP that she needed to access education. So I fought. Wrote the complaint. Submitted the appeal. Lodged the tribunal.
Then, I think we all know how well the NHS is functioning right now.
The NHS and social care
For disabled children not having access to the healthcare they have a right to is another arena in which they are being failed. Children are stuck on two-year waiting lists for an assessment for Autism. My own daughter required urgent surgery, due to a breathing problem while she was sleeping. The waiting list was over six months. When I say ‘urgent’, I mean life-threatening. My daughter was denied referrals for Orthotics support with the excuse that it’s normal for children with Down’s Syndrome to have hypermobile ankles. Yes, so treat it with the correct insoles and support. I wrote the complaint. Made the phone calls. Got the appointment.
If anyone has had to call 999 and have a trip to A&E you will know the trauma of that scenario under the current circumstances in the NHS. Which brings me on to social care.
Families who have a disabled child face higher levels of poverty than those with typical children. More often than not, one parent has had to give up work to care for their child. Why? Because there is no social care service. Social care is broken. Even for the few children who qualify for a few hours, it’s virtually impossible to find a support worker. Another gift from Brexit. Carer’s Allowance for parents who have had to give up work, stands at £81.90 per week. Often for providing 24/7 care. That drop in income from parental loss of a salary affects disabled children drastically. There are no letters to write or complaints to lodge about this. This is the accepted normality for families like mine, from our government.
Locked out even further by the Labour government
So we have disabled children locked out of healthcare, education, and even opportunities to enrich their lives.
I can count on one hand the amount of wheelchair swings there are in Northumberland. Changing Places facilities are few. Activities are often not inclusive. Community groups run by parent carers who volunteer their time, and what little energy we have, seek to create opportunities for children with SEND to experience childhood activities in an accessible format. The group I run is massively oversubscribed. Places on enrichment activities are in such demand. Children miss out on enrichment experiences due to their disability.
Implementing the social model of disability is vital for children too.
So yes, I am celebrating Betsy today on World Down’s Syndrome Day. I am celebrating her life, the amazing person she is: her resilience, her kindness, her creativity, and her very being.
At the same time though, I am beyond angry at how this government have created a destructive narrative around her. That she won’t have worth if she can’t work. This, combined with the complete failure to have a working social model of disability support in place for children in the UK, paints a dark picture for her future.
World Down’s Syndrome Day: give disabled children a chance
On World Down’s Syndrome Day I call on our government to take a close look at the stark reality of life for disabled children in the UK and ask themselves, is this what you want to be your legacy? Exclusion. Sickness. Poverty.
Give disabled children in the UK a fighting chance. After all, they have human rights. Don’t they?
Featured image supplied
