Sunday 3rd of December 2017 marked International Day of Person's with Disabilities. To mark the day we interviewed Rainham resident Colin Nickless who spoke of his six year old daughter Ellie, who is diagnosed with Cystic Fibrosis, Autism and awaiting a diagnosis of ADHD.
1. Please introduce your child and tell us a bit about her;
Ellie is a lovely happy 6-year-old girl. She lives with her Mum, Dad, brother Freddy, and 3 dogs in Rainham in East London. Ellie was diagnosed with Cystic Fibrosis through the heel prick test, shortly after birth. During her early years Ellie had to endure difficult daily treatments and therapies to manage her condition. Later she was also diagnosed with low-functioning Autism, Hypermobility and is currently awaiting a diagnosis for ADHD. Ellie loves spending time playing on her iPad, swimming, playing outside, and going to her school - the excellent Treetops School in Grays, Essex. The impact of her disabilities has caused Ellie to be unable to dress, feed or wash herself, and also needs assistance with toileting as she is incontinent. Ellie has no concept of danger, is a flight risk, so needs constant supervision. Often the needs of treatment of Cystic Fibrosis, clashes with complications due to her Autism diagnosis.
2. Please describe a typical day with your child;
Ellie usually wakes early, which can vary between 1 - 6 o clock in the morning. Since she has been prescribed Melatonin to help her sleep, her sleep patterns have become more consistent, however being up in the night is not unusual. She has boundless energy, and can recharge completely on only a few hours’ sleep. When Ellie wakes, she is quite vocal, so this usually means the whole house is awake. Ellie amuses herself by movements and noises, until she is given her iPad for entertainment. Breakfast routine consists the administering of medication, and yogurt with a supplement drink. Originally she didn't eat solid food and for the first few years she had a gag reflex which meant that she was sick several times a day. She has had desensitising programmes designed to get her into a position to accept solid food, and although we have seen progress on this, with Ellie eating small amounts of finger food, her diet mainly consists of yogurts, milk and supplements. After breakfast Ellie needs her nappy changed, and getting dressed for school, before her bus collects her from our doorstep.
During the school day, she will engage in programmes designed to improve her way of life, whilst also enjoying playful activities with her fellow students. She is currently on programmes designed to promote toilet training, desensitising to nebulised medication, and eating solid food. One of the most amazing things we have seen change since Ellie has attended school, is that she is starting to request her needs. Ellie is non-verbal, and often her inability to communicate her needs has led to her frustration, which often manifested in challenging or violent behaviours. She has now, due to her school’s programmes, started to request her needs using words or simple sentences. We are hoping this will expand so that later in life Ellie can tell us when she is in pain, and where that pain is. She adores her school, and misses it during the holidays.
When Ellie returns home from school on the bus, usually a good hour after school has finished, she is treated to her daily treat of an ice cream. Ellie has learnt to request this and it is a good reward for a hard day’s work at school. After school, she spends time relaxing with her iPad, before the night-time routine of bath, medications and dinner. Ellie falls asleep after being given sleep medication, around 10. After she is asleep, Dad performs an hours’ worth of nebulised medication a night, since she is unable to tolerate the mask on her face when awake.
3. Do you access any local services for your child, and if so do you feel more support should be put in place in the community for those with disabilities?
Ellie enjoys access to 4 hours of short break payments per week, which is used to pay her career, whom she adores and loves spending time with. The short breaks give us time as parents to spend by ourselves. As a family we are lucky that we can support each other in Ellie's care, however we do not have family to support us. The local authority also funds Ellie's school place in neighbouring Thurrock and transport to and from school. Because of Ellie's complex needs, and the failure of traditional approaches to speech and language therapy, Havering recognised that Treetops was the best placement for her.
Ellie is lucky she has two parents that fight tirelessly for her needs, but others coping with disabilities are simply not able to devote the time or energy into the fight. I have seen first-hand the effects of cuts on services, to the vulnerable with disabilities. Many of these people are unable to help themselves or question the system. I would like to see more support given to families affected by disabilities, access to advice over payments of benefits, support over benefit judgements and access to services. As new parents, we had no idea what we we’re entitled to, no clue about support services available or who to contact to give us advice on this.
4. On International Day of Persons with Disabilities what awareness would you like to make for your child?
With Ellie, both her main disabilities aren't obvious just by looking at her. Sometimes we have encountered comments and looks when out in public, with either members of public mistaking her behaviours for "naughtiness" or not realising what Autism is when told. I feel there should be much more awareness and training given to the public on this, to lead to greater understanding of the disability. Often we would meet someone and they would say something like, "oh my friend’s child has Autism and she can do this and that", often mistaking that all children with Autism are the same. Just because one child can do something doesn't mean all children can and in my experience this can be upsetting on the parent’s part. With Ellie's Cystic Fibrosis this mostly manifests in the treatment of her lungs and management of medication. This wouldn't be obvious to someone meeting her for the first time. Sometimes we feel that because Ellie isn't sitting in a wheelchair or carrying around an oxygen cylinder, the public can be dismissive of her disabilities.
One thing that I have also encountered first-hand is a lack of information of what help parents are entitled to. Before Ellie was born both my wife and I had always worked, never claimed a benefit, or had no concept of the disabilities that would soon transform our lives. Because Ellie's care was so intense, 18 hours a day at the start, and 120 mile round trips to hospital where frequent, we were unable to work - which quickly bought about giving up our home and moving back in with parents. As we were unaware of the help available we struggled at first. Disabled children have to wait 12 weeks to get registered and be able to access services. There are charities that help and advise families but we were unaware of this at the time and may families are hit with the double whammy of coping with the shock of coming to terms with disabilities but also stress from financial pressures.
Although Ellie was diagnosed with Cystic Fibrosis shortly after birth, she wasn't diagnosed with Autism until she was 2. We were lucky that our concerns over Ellie's development were flagged up by Ellie's consultant paediatrician, as Autism was impacting on the treatment and management of her CF. Many families aren't as lucky and have to wait for diagnosis much later in life. Early intervention is vital in children living with Autism and can make a huge difference in later life. Many families are suffering from cuts in budgets and delays in diagnosis.
As parents, we have had to fight to get Ellie everything she needs. In the last 6 years, we have seen an attempt to take Ellie's Disability Living Allowance down from the highest rate given originally, to a middle rate, meaning the family would have lost out financially and access to the motorbility scheme withdrawn. The decision to attempt this was ridiculous seeing as Ellie has a life-limiting, debilitating disease, but also that she had two further diagnosis since the original decision. I am certain that if it wasn't for the efforts of my wife in sending in her entire clinic notes, 600 pages in total, our complaints would have been in vain. Our family has also seen a fight through the tribunal process to force the local authorities to provide the education and care services for Ellie and even had to relocate from Devon to London, to ensure her needs are met. Other families aren't able to spend the time and energy fighting the system which should be there to help families in need.
5. What changes do you feel this country could make to better the lives of those living with a disability?
At the moment, it feels like families living with disabilities are treated as second or third-class citizens. During the period of Austerity, it has been noticeable that cuts to public services have hit disabled families hardest. In a recent report by the United Nations it found that the "government was failing to protect disabled people’s rights and ministers had failed those with disabilities through a catalogue of welfare policies". I would like to see these families properly supported, given access to the support services they need and education required. If society is judged on how it treats its most vulnerable, then surely, as a society we should be putting families living with disabilities first.