HOW CAN A PHENOTYPIC GUIDE HELP YOUR CHILD'S EHCP?
TRAITS & BEHAVIOURS of CONDITIONS, DISEASES & DISABILITIES
What is a Phenotype - What is a Behaviour - What is an Expression - What is the Trait?
Humans have Genotypes (A genotype is an individual's collection of genes/simply put DNA. The term also can refer to the two alleles inherited for a particular gene. The genotype is expressed when the information encoded in the genes' DNA is used to make protein and RNA molecules. The expression of the genotype contributes to the individual's observable traits, called the phenotype.) Your genome is the instructions for making and maintaining you. It is written in a chemical code called DNA. All living things have a genome; plants, bacteria, viruses and animals.
What is DNA (deoxyribose nucleic acid) is a long molecule. It has a twisted, double helix shape. DNA is made up of four different chemicals, or bases. These are represented by the letters A, T, C and G. The bases are attached to two phosphate backbones. The bases are paired together; A with T, G with C. The two backbones twist around each other to give the characteristic double helix. As well as being helix shaped, DNA is tightly packed so it takes up less space. If you stretched the DNA in one cell all the way out, it would be about 2m long.
What are Phenotypes An individual’s phenotype, in addition to referring to non-health related characteristics such as eye colour, can also be used by healthcare professionals as an indication that the person may have a particular condition. The phenotypic information could then influence the direction of the clinical investigation. For instance, an individual may present with features associated with a congenital eye condition, so it may be appropriate to screen the individual for variants in genes known to be linked to the particular phenotype. [https://www.genomicseducation.hee.nhs.uk/glossary/phenotype/]
How can an Expression Guide help your Child's EHCP? [Section C - Health Needs that Relate to SEND]
EHCP Section C: Health Needs that Relate to SEND
An education, health and care (EHC) Plan is for children and young people aged 0 to 25 who need more support than is available through special educational needs support. EHC Plans identify educational, health and social needs and set out the additional support to meet those needs. [https://www.gov.uk/children-with-special-educational-needs/extra-SENh-help.]
The EHCP is to monitored and reviewed in line with the Children and Families Act 2014 and the SEND Code of Practice. [Statutory Guidance SEND Code of Practice: 0 to 25 years; 2014 as amended 2015, and any subsequent updates and amendments.]
The SEND Community, know that there is a SEND Crisis, the Government and it's Departments know that there is a crisis, Local Authorities know that they are failing in their delivery of said EHCP's, yet the DfE, continue on with blissful ignorance.
Currently there is no one template for how EHCP's need to be drawn up and or drafted; each Local Authority, drafts the EHCP format as they see fit. As with all legally binding documents, there is a set formula and or set criteria to be used in line with legislation, which ensures that a legally binding contract is just that, legally binding.
The majority of EHCP's I/We have come to inspect, whether as part of a inspection/consultation with Local Authorities and or for Families who are at appeal stage or struggling through draft stages, are not fit for purpose, and hold no legal standing what so ever. In fact so many EHCP's are simply time and paper wasted, at the cost of a child's life and well-being, not forgetting wasting the resources. Your child is left without, their needs are not met.
EHCP's need and must be factual, detailed, specified and quantified as well as evidenced. This is where our service comes to the fore.
How can an Expression Guide help support your child's EHCP and what would a guide do to support those who consult the EHCP?
Let's face it, who has the time to read hundreds of scientific papers, to extract two sentences. We have access to data bases and scientific journals which span the globe, we are trained and qualified through a variety of scientific standards. The guide, is embedded into the EHCP to help 'others' 'lay persons' and 'professionals' to understand what your child has been diagnosed with and how their diagnosis impacts on their health, wellbeing and learning. The information contained within enables those who support your child, to understand why your child is they way they are, thus, eliminating speculation, subjectivity, allegations and factual inaccuracies.
Each child and or young person is unique, not all will have the same behaviours, traits, expressions, and so, we will draft and piece together your child's expressions, in line with their diagnosis, condition and disease, and link their expressions with the impact it has on their education, learning and social and emotional wellbeing, into Section C to also assist with Sections D, G and H.
The guide places all of your child's traits into a simple easy to read section.
What if your child doesn't have a diagnosis an or is still awaiting an outcome?
We will sit down with your family, and detail the behaviours, whilst looking at what your GP and or Paediatrician has already noted down.
It may be, that your child needs further referrals, testing and or assessments to have a clearer picture.
There are 1.3 million pupils [England] with SEND, who represent 14.9 per cent of the total pupil population. - January 2019 [www.schoolsweek.co.uk] that face this SEND Crisis day in and day out, I/We want to put a stop to this, most notably put a stop to abhorrent allegations of Fii, so that Families and their Children can start living happier, healthier lives, in line with The Health Principles of 1946 and Marmot's Wider and Social Determinates.
What is this Phenotypic Expression Guide and what does it look like?
For the purposes of this example, we will be using a Specific Syndrome, namely SETD 5. The below live sample, highlight's 3 Specific Phenotypes associated to SETD 5 and then the Description of the Phenotype and how it impacts Learning, Education and Health for the sole purposes of the EHCP being specific.
Phenotype/Expression:
- Learning Difficulty
- EDUCATIONAL SETTING
- EMEDDED LEARNING
- ADAPTIVE CARRICULAR
- PROCESSING
- MEMORY
- ACCESSIBILITY AIDS
- ADAPTIVE ENVIRONMENTS AND PROCESSES
Description / Impact:
- Learning difficulties (reading, writing, cognition – access to education [literacy, numeracy])
- Social understanding and communication
- Inability to be aware of Danger
- Social Inclusion
- Double Exceptionality
- Significant Limitations in intellectual functioning and in adaptive behaviours which cover every day social and practical skills
- Spikey Cognitive Profile
Phenotype/Expression:
- Language Delay and or Stammer – Dysfluency
- SPEECH AND LANGUAGE PROCESSING
- ADAPTIVE SOCIAL SKILLS
- READING TIME
- EASY ACCESS MATERIALS
- SYMBOLS
- SALT
- TIME MANAGEMENT
- ACCESSASBILITY AIDS
Description / Impact:
- Neuro Signal Processing (retrieval of memory to process – slower or to quick firing)
- Stammer can be described as dysfluent as it’s not a true stammer
- Speech dysfluency can fluctuate daily
- Working / Short Term memory poor
- Long term / Event memory recall heightened
- Classroom positioning
Phenotype/Expression:
- Ritualised Behaviour and or Autistic Typical Expressions
- SPEECH/SENSORY PROCESSING
- TIMEMANAGEMENT
- CHUNKING
- ZONES OF REGULATION
- PSYCHOTHERAPY
- SAFE SPACE
- SPORT RELEASE
Description / Impact:
- ASD – [Autistic Spectrum] Specific body movements (hand flapping, tapping, Tourette's, eye movements, specific singular topic specialisms
- ADHD
- Comfort Seeking Behaviour
- Social Communication Difficulties / Overly Social
- High Intellect for specific subjects
- Random Sounded outbursts
- Non-Violent ~ Frustrated outbursts
Phenotype/Expression:
- Sleeping Difficulties
- FATIGUE
- CONCENTRATION
- SPEECH
- COGNITION
- LIFE IMAPCTING (ALL AREAS) AFFECTING EDUCATION AND HEALTH
- ATTENDANCE
- ANXIETY
- DIET
Description / Impact:
- Difficulty falling asleep at night or getting back to sleep after waking during the night
- Waking up frequently during the night
- Lack of quality sleep can have a negative impact on your energy, emotional balance, and health - Education impacted, Learning is impaired - Mood dysregulated
How do you Commission Us?
Not only can we produce your Phenotypic Guide for your child's EHCP, we can also refer you to specialists within the NHS and or Privately. Furthermore, we can consult with Local Authorities, Schools, Colleges and other Clinical, Therapeutic and Medical Professionals, to support them with their understanding of your child's and or young person's condition, syndrome, disease and or disability.