For ‘Young Carers Awareness Day’ I thought I’d touch on the bigger picture on the domino effect that leads to children looking after their disabled/ill parent.
As more disabled people are empowered to fulfil their dreams and aspirations regardless of their limitations, as they should be able to – like any other person. It has become apparent there is little to no support system in place for disabled people wanting to start a family! Particularly to support them in their role as a parent. In every other area of life a disabled person wishes to divulge in; education, employment and travel as just a few examples – it is the law that we have the equal opportunity to access these things just as our able population. It is the law that there are programmes, support systems and protocols in place to make the suitable adaptations to enable a disabled individual to be on an even playing field. The majority of us need tailored adaptations and reasonable adjustments made to ensure that we are given those equal opportunities. These programmes, support systems and protocols have proved time and again that with the right support we can achieve things like PhDs, well-paid jobs and the ability to travel the world if we so wished. Although the systems in place are not by any means perfect and take some fighting to secure, they are there. Which is not the case if you are a disabled parent, as I sadly discovered the hard way when I had my first child in 2012.
In fact not only is there nothing in place, but stigmas are also still rife and left unchallenged, uncorrected and highly uneducated. Society in 2019 still does not embrace that disabled people have the right to start a family.
I joined a Twitter hashtag recently that proves how influential films are at portraying different minority groups, and in a negative way. This is how producers are representing disabled parents to the world;
Doesn’t this sound medieval? Yet sadly, it’s the mainstream attitude towards parents like me.
What people fail to recognise is that no decent human being – disability or not, sets out to have a child – solely to bring into the world to care for them. Many disabled people can manage completely fine with pregnancy and parenthood, raise well looked after and adjusted children that grow up to be highly accomplished members of society. Though there is a portion of disabled people who do have some extra challenges when it comes to achieving their dreams of having their own family.
These disabled people often have in-home support from agencies supplied by Social Services, receive Direct Payments from the local authority to hire and manage their own care (like myself) and some sadly struggle to be officially identified as “disabled” e.g those with chronic illnesses rather than disabilities or those facing an invisible disability – so often don’t meet the criteria for support from the Social and are left to struggle on their own or rely on relatives.
So what happens when a disabled person becomes a parent, but they need care themselves?
As there is no protocol in place within Adult Social Services to support disabled parents to have the same equal opportunities as your non-disabled parent. We don’t know where to go for support, equipment to make things easier and there being no specific assessment process to gain funding specifically to help a disabled parent in their role via e.g PA support to aid in the physical struggles they may face in parenting. The horrifying realisation is not only is there nowhere to turn for support, but 80% of new parents with disabilities are red flagged by a member of staff at the hospital they give birth in, to Children’s Services where safeguarding comes into immediate effect. Due to this statistic, many disabled/ill parents are terrified of asking for help as we are lumped into the same category as parents with substance abuse issues, alcoholism and those who neglect/abuse their children, simply because that is there is nothing place for parents like us.
That’s where some of the blame lies here for how children become young carers. Parents are so scared of losing their children, they rather struggle than ask for some kind of support to be implemented in the family home as the risk of losing their precious child is simply not worth it. Of course, it isn’t! It is a parents job to protect their child at all costs. Disabled or ill parents do not want their children to care for them or help with household tasks beyond their years, but if losing them is the only alternative what kind of choice is that?
Many disabled women who become pregnant know they’ll need support in place once the baby is born and actually responsibly self-advocate for this. Hit roadblocks within the constraints of an already financially deprived social care system, and constantly slip through the net, DESPITE making the relevant individuals aware that they need support and are actively seeking to sensibly put in place prior to the arrival of the baby. I was told by my Social Worker when I was pregnant, actively advocating for extra care hours to support me with the physical aspects of looking after a baby I knew I’d struggle with;
“We cannot begin the assessment to apply for additional funding in your care package for the reason of supporting you in your role as Mum until baby is actually here.”
I found it utterly ridiculous, here I was – actively seeking to have all my ducks in a row to enable me to be the best Mum I can be, knowing I’d need physical support with some aspects of baby’s care to be told we couldn’t even do the assessment, which takes 6-12 weeks or LONGER to go to panel, where there is still no guarantee extra support hours would be granted, until baby was physically here. To me, that is THEM and their procedure process, rules and regulations putting the baby at risk. They’re following other protocols that shouldn’t and don’t apply to us, because there isn’t one for disabled parents. It’s essentially like trying to fit a square peg in a round hole. If you’re lucky, you’re granted some hours on what’s now deemed as “supportive parenting.” A foreign concept to most local authorities but thankfully as more disabled people go on to have families, this pocket of funding should start to become more commonly familiar and available across the country.
Even if you are granted that gold dust funding, fight through assessments that don’t fit your circumstances etc, the funding is minimal due to government cuts to disabled people as a whole. When many support systems like the Independent Living Fund (ILF) were abolished, our government promised that disabled people wouldn’t be worse off. That the money would simply come from various other pots and be given to each local authority to disperse to those who needed it the most. Only it didn’t quite happen that way, it was far lesser and each local authority got different amounts. So funding for care for disabled people living independently is now a postcode lottery. Lucky enough to live in the right places, you’ll get the right level of care hours you need to live a good quality of life with your condition, live in the wrong place you get nothing or next to it.
With this knowledge, you can see how young carers become so. There being zero protocols/support systems in place within social care for disabled parents and a postcode lottery government funding scheme is the reason many children with disabled/ill parents are robbed of their childhood. Let’s change that!
Would you support a campaign to implement a specific protocol for the support of disabled/ill parents within our social care system?
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