Originally entered as a post on my Facebook page “Cat on a Trampoline” on 20th October 2013.
[ This post is NOT about the Stapleton case Itself. Let’s make that clear. It was inspired by some of the testimonies and feedback that I have read about the case. This piece is a reflection on the unbelievable amount of stress that having to negotiate with health insurance companies can add to the pressures of bringing up a child with autism. It is also an expression of gratitude that we in the UK do not currently have to negotiate with such a Health care system. I wasn’t aware of Kelli Stapleton’s blog and Facebook page before the incident, and It is none of my business whatsoever to add in retrospect my own unasked for opinions to the swirling wave of responses to this sad, personal tragedy. If you yourself wish to read more about the incident, google and Facebook will take you to numerous blogs and pages where people far more eloquent than I have discussed and debated every aspect of the case with varying degrees of insight, emotion and humanity ]
In the last few weeks, during my travels around various autism pages and blogs, especially those based in North America, I came across reference to the desperately tragic case of the Stapleton family. The couple – Matt who is a high school principle, and Kelli who was a blogger and energetic fundraiser – had three children, one of whom (a 14 year old daughter, Issy) is autistic. They spent many years battling with education providers and health insurance companies, and dealing with aggressive behaviour from Issy within their home. At the start of September, following an incident which led to Issy’s access to schooling in her local area being withdrawn, Kelli tried to take both her own and Issy’s life through carbon monoxide poisoning using charcoal barbecues. Thankfully, they were found and taken to hospital, both survived. Issy is now recovering and her mother is in prison awaiting trial.
I have read various accounts of the Stapletons’ story, and reams of feedback about the case, on various pages and blogs. In doing so I found many agonised testimonies from people who are being broken – emotionally, spiritually and financially – by the ongoing battle to fund treatment and therapy for their children. It really hit home to me how lucky we are to live in a country with a National Health Service.
I have always lived in Britain, so I have never needed to have health insurance. I’ve only had a few dealings with insurance companies – once when we were burgled, 3 times with car insurance companies (when I have carelessly driven into other moving vehicles). It was irksome and at times stressful. It was front-loaded with forms and procedure and unhelpful call-centre staff.
I absolutely cannot imagine how much more stressful it must be to not only have to negotiate with health and education providers about what intervention and plan is best for your child, but to also have to constantly fight with Insurance companies to fund the intervention.
We have been unbelievably lucky with Melon so far – any other parent’s of children with an ASD who are reading this I really wish you could all share our experiences.
Melon’s statement of educational needs (the plan that sets out which school she must attend and what support should be provided) was compiled relatively smoothly based on assessments/reports from psychology, speech/lang, SENCO lead at nursery and the Paediatrician. The entire statementing process, from initial report requests to the school recruiting and appointing Melon’s 1-1 worker took 3.5 months.
Melon’s diagnosis earlier this month happened staggeringly easily. We went for a review with the paediatrician, who had seen us twice previously. We requested screening for ASD, and she surprised us both my making the diagnosis there and then, stating that all of the existing reports/assessments of Melon by herself and the team gave her sufficient grounds to call Autism.
Melon’s school (and before that, nursery) have embraced her and seem to share the same vision as us for her educational future – for as much integration to mainstream as possible. Her 1-1 funding is only secured on a full time basis till January, and a funding meeting with the school governors is in a couple of weeks, but the school will be advocating for no change to her support levels, and the other professionals on the team support that.
The other professionals (excepting our superb speech/lang therapist who we chose to pay for privately for various reasons) include Educational psychology and a specialist communication and autism team. Alongside their work with Melon, the latter will be offering me in November, a mere month after diagnosis, a 6-day Parental training and education program that looks at autism, behaviour, sensory issues and helps us to build a local support network.
And this is all FREE. To us. Obviously there is a cost which is met by the local authorities, school budgets, NHS and ultimately by tax money. How much worse would our experiences have been if we had had to battle and negotiate with an insurance company to get all of Melon’s assessment and interventions approved before they could get started. Melon is not a damaged car, or a stolen XBox and I am beyond grateful that I have never had to think of her in this way.
I am a qualified psychiatric nurse. I work in the NHS, and when I return from an extended maternity leave in January and there will be big, worrying changes afoot. Thank God, none of those changes seem to involve clients/service users/patients having to pay for their care at point of delivery. I have always and will always pay my taxes and am grateful every day that they get used (in part) to run a health service that is free to all, despite waiting lists and staff shortages. It has to be better for families like us than the difficult situations I have been reading about.
If you aren’t a family like us, count your blessings, because it may not always be so. We never intended or wanted to be in need of all this support, but when an Autism diagnosis does happen in other families, in the UK anyway, the same safety net that is helping us rebound will be there for them too.
For now. I pray that it will continue to be so.