Accessing specialist support from Children's Integrated Therapy Service

The emphasis of Occupational Therapy is enabling. This means helping children to overcome functional difficulties that affect daily life and may present at home or in the school environment.

Referrals are specified for children who present with significantly delayed motor development which impacts on their daily functioning (significant functional impact). This includes children with an underlying neurological condition, motor-planning difficulties, global developmental delay, upper-limb dysfunction, palliative care and life-limiting conditions. There is an expectation that all school-age children who do not have an identified neurological disorder access the Jump Ahead programme, designed to address fine/gross motor skill acquisition and Sensory Circuits (sensory-motor programme) at school before a referral is considered. When considering a referral please see below:

• Significant functional impact: Difficulties that are not in line with their developmental stage and needs can’t be met through universally available resources/advice with significant impact on their daily functioning at home, at school, or in the community.
• Multiple functional concerns: Functional concerns where primary need is not sensory processing or emotional regulation, for example, motor planning and organisational skills, age-appropriate ability to dress/self-care
• Not an isolated issue: For example, handwriting difficulties. The school would typically provide the initial support in these cases.

Postural management

Occupational Therapists work closely with Physiotherapists to identify appropriate seating systems or equipment to support 24 hour postural management of children with complex physical disabilities. Seating can range from low level postural support to complex, dynamic modular seating systems. Similarly, Occupational Therapists will work closely with their Physiotherapy colleagues in relation to prescription of sleep systems to ensure correct positioning at night-time.

Activities of daily living

Occupational Therapists are able to identify and work with children to identify the underlying difficulties preventing a child from being as independent as possible in areas of self-care. Interventions may be in the form of a programme, advice, direct intervention from an Occupational Therapist or Integrated Therapy Assistant under the guidance of the treating therapist or by adapting an activity to meet the needs of the child. Interventions may include the following:

• Dressing, use of techniques such as backward chaining to support skill progression
• Eating and drinking, for example, use of cutlery, dycem (non-slip mat), plate-guards and activities
• Access to suitable bathing/ toileting facilities.

Equipment/ minor adaptations to support daily living

 Occupational Therapists may provide equipment to facilitate independence either in the home or to access education. Interventions may include the following:

• Access to bathing/ showering: bath-lifts, grab rails and shower-chairs
• Toileting - commode, specialist modular toileting systems
• Manual-handling equipment, for example, mobile hoists, transfer-boards, slide sheets.

Adaptations (0-18) over 18’s should be referred to Adult Social Care

For children with complex physical disabilities or challenging behaviours compromising their safety in the home, there may be a need to adapt the home/ and or school environment. Major adaptations are subject to criteria set out in the Disabled Facilities Grant legislation and the budget is held by local councils. Occupational Therapists are responsible for assessing need under this legislation and making clinical recommendations regarding reasonable adaptations to meet a child’s needs. It is not always possible to provide a solution within the grant funding, in such cases the Occupational Therapist will work with the wider multi-agency team to support a family with exploring re-housing options.

Motor co-ordination difficulties which severely affect functional daily living a referral will only be considered where children have accessed the Jump Ahead programme or Sensory Circuit programme but there are still ongoing difficulties, for example:

• Sequencing movements
• Spatial awareness
• Body awareness
• Motor planning.

Evidence is required where a child has been unable to progress and Jump Ahead should be completed a minimum of 3 times a week for 4 academic terms.

Developmental co-ordination disorder (DCD)

Children with clearly documented and enduring coordination difficulties (dyspraxia) which significantly impact on their ability to complete activities of daily living subject to meeting criteria will l require the specialist expertise of an Occupational Therapist within Children’s Integrated Therapy and Equipment Service (CITES). These children should continue to be referred to CITES. This includes the diagnostic pathway joint with East Sussex Healthcare Trust Paediatricians.

Visual perception

Visual motor integration impacts on handwriting and letter formation; handwriting difficulties in isolation will not be accepted. Please note we do not deliver handwriting programmes but will assess and advise schools regarding implementation of appropriate programmes where applicable. Children or young people with a visual impairment should be referred to the Sensory Needs service.

Upper-limb

Occupational Therapy focuses on restoring functional use of the upper limb, addressing difficulties such as limited range of motion, poor in-hand strength/manual dexterity or tone caused by a neurological impairment or underlying condition which severely impact on independence in daily activities. An upper-limb programme to promote function and development of self-care and/or a range of interventions may be used if treatment is indicated, for example, modified Constraint Induced Movement Therapy (mCIMT), bi-manual therapy or Cognitive Orientation to Occupational Performance (CO-OP).

Orthotics

Where indicated a hand splint may be prescribed; this includes use of ulnar deviation, thumb-inhibition splints, night splits post-botox in collaboration with tertiary centres and lycra splinting subject to meeting criteria.

Conditions accepted

1. Babies/children with a motor difficulty or delay:

• Delayed head control – for example, baby unable to control head and neck position when moved between positions by three months
• Delayed rolling, sitting, walking, climbing stairs, jumping etc. (please see appendix one for further information on typical motor development)
• Children over five that have higher level balance / coordination difficulties impacting function. Children must have completed four terms of Jump Ahead within school and not demonstrated progress in their gross motor skills to be eligible.
• Babies/children with a diagnosis of Down’s syndrome only to be accepted if there are multiple comorbidities such as long hospital stay, cardiac difficulties and other high risk features as outlined below.

2. High risk and premature infants:
   • Any high risk and/or premature babies with one or more of the following:
     • Any preterm infants showing unusual movement patterns, postures or altered tone
     • Stormy neonatal course: Hypoxic-Ischaemic Encephalopathy (HIE), Intraventricular haemorrhage (IVH)
     • Significantly delayed head control
     • Significant asymmetry in limb movements / use of limbs; parents describing ‘handedness’ under age of two, toe walking on one side only
     • Excessive floppiness or concerns with uncoordinated and jerky movements
     • Stiffness; often reported by parents in relation to difficulties with dressing, changing nappy, cleaning under arms
     • Unusual movement patterns / posturing, for example, arching back
     • Gross motor skill regression.

3. Babies with orthopaedic conditions

• Torticollis / head turn preference
• Babies with Erbs palsy / Obstetric Brachial plexus injury where it is causing developmental difficulties / impacting the acquisition of other gross motor skills or if there are concerns that there may be underlying neurodevelopmental difficulties associated with traumatic birth.

**N.B Concerns regarding asymmetrical hip/buttock creases or clicky hips will require a discussion with GP with regards to onwards referral to orthopaedics. Physiotherapy referral not indicated for asymmetrical hip creases alone in absence of impact on function / development.

4. Emerging and/or confirmed neurodisability:

• Emerging or identified motor disorder impacting on gross motor development, function and/ or posture; for example:
  • Cerebral palsy
  • Epilepsy with defined needs associated with the child safety
  • Metabolic disorders
  • Genetic conditions
  • Spinal dysraphism
  • Neuromuscular conditions which involve a progressive loss of functional motor skills, for example, Charcot Marie Tooth, Spinal Muscular Atrophy, metabolic disease, muscular dystrophy
  • Gross motor skill regression
  • Rehabilitation following SDR, where prior funding has been agreed
  • Neonatal/childhood stroke and acquired brain injuries – this does not include intensive rehabilitation, and children and young people should be ready for discharge to community services.

Treatment and frequency will vary depending on the age and the stage of the child.

• All children with a new diagnosis of neuromuscular disease
• Early years children with a plateau of gross motor development for more than six months
• Children demonstrating a regression or loss of motor skills
• Post orthopaedic surgery related to their condition.

5. Rheumatological Conditions (Juvenile Idiopathic Arthritis is being suggested to be provided by MSK as part of out of scope):

• Only where the child is unable to attend a non-CITES outpatient-based clinic and there is a clear functional community specific need impacting function / participation within the school / community
• Children under the age of four experiencing functional difficulties related to a diagnosed rheumatological conditions.

6. Rehabilitation following multi-level surgery and caused by acute trauma, orthopaedic or neurodisability need

• Only where the child is unable to attend a non-CITES outpatient-based clinic and there is a clear functional community specific need impacting function / participation within the school / community

7. Oncological conditions

Only where the child is unable to attend a non-CITES outpatient-based clinic and there is a clear functional community specific need impacting function / participation within the school / community and/or support required with posture to ensure comfort and function either as a result of the oncological treatment or primary diagnosis.

8. Palliative care

Only where the child is unable to attend a non-CITES outpatient-based clinic and there is a clear functional community specific need impacting function / participation within the school / community and/or support required with posture to ensure comfort and function either as a result of the palliative care or primary diagnosis.

9. Concerns with gait - children with altered gait patterns or variants of the lower limbs which is impacting on function or development:

• Asymmetrical/unilateral in-toeing/ out-toeing/ toe-walking
• Persistent toe walking where at least two of the following apply:
  • There is associated motor delay or functional difficulties
  • The child is unable to squat or stand with their heels on the floor (indicating tightness of calf muscles)
  • The child is indicating pain or discomfort
  • The child is over three years old and is unable to stand from floor sitting without using their hands.

** N.B Physiotherapy is not indicated for toe walking related to sensory needs such as Autism Spectrum Disorder (ASD) where the above does not apply.

10. Chronic fatigue/pain conditions and/or functional neurological disorders – referral would be accepted if condition is significantly impacting on functional independence in activities of daily living, and where children are currently actively engaging with, or have previously actively engaged with CAMHS/primary Mental Health Services over the last two years.

Conditions not accepted

1. Babies presenting with plagiocephaly/brachycephaly (altered head shape) in isolation (without any head-turning preference).
2. Functional difficulties, for example, trips, falls, unsteady on stairs, that are directly associated with sensory and/or inattention that are likely to be a barrier to physiotherapy intervention. In these cases, please see the guidance on our website.
3. Children whose primary presenting problem is musculoskeletal in nature such as back pain, knee pain, shoulder pain. Or hypermobility associated pain.
4. Children presenting with general health and fitness concerns such as obesity, fatigue and reduced endurance. See the School Health webpages.
5. Children with respiratory disorders requiring active respiratory techniques.
6. Children with typical variants of the lower limb, for example, hypermobility, symmetrical/bilateral knock knees, symmetrical/bilateral bowed legs, flat feet, curly toes. Children presenting with ankle or foot deformities not associated to a primary physiotherapy need (for example, flat feet, overlapping toes, leg length discrepancy, foot size discrepancy, etc.). Referrals should be made by the GP to Podiatry if appropriate for the child.
7. Children with typical variant gait patterns, for example, symmetrical/bilateral in-toeing/out-toeing.
8. Children requiring wheelchair provision only. Referrals should be made by the GP to the East Sussex Wheelchair Services.
9. CITES does not provide therapeutic approaches where there is a limited evidence base or that are not endorsed by the relevant professional bodies and/or NICE guidance.

Referrals

Please note that all referrals for Speech and Language Therapy should be made using the CITES referral form.

Further evidence (e.g. Ages and Stages Questionnaire, Schedule of Growing Skills, Language Link® and Speech Link®, and East Sussex Speech Language and Communication Monitoring Tool) should all be submitted as further evidence for referral.

Dysfluency (also known as stammering or stuttering)

Referrals from three years

Many children experience non-fluency when they start to talk in phrases and sentences between two to three years of age. Usually, this non-fluency subsides within three to six months. When this happens, it is helpful for parent/carer(s) and professionals understand stammering so that they can provide a child who is stammering with reassuring messages about themselves as a communicator and support a child to feel good about their talking (please find information and resources on our website to support this). We advise a referral after three months if any of the following are in evidence:

• The child has shown frustration or upset about their talking
• Parents are concerned or worried
• There is a history of stammering in the family.

Parent/carer(s), education settings and other professionals known to the child can refer at any point via the website if a school aged child is stammering.

Selective mutism

Referrals from three years

Selective Mutism a condition where individuals can speak but consistently fail to do so in specific social situations, despite speaking freely in others. It's not a choice, but rather a form of anxiety that can manifest as a "freeze" response when faced with speaking in certain settings. For example, they may stop talking at home if someone outside the immediate family unit joins them. The inability to speak interferes with children’s ability to function in that setting, and is not usually better explained by another behavioural, mental or communication disorder. We would always advise a referral to Speech and Language Therapy where selective mutism is a concern; outcomes are much better with early intervention. We accept Selective Mutism referrals for children three years and older.

Please note that some children also present with Reactive Mutism. This has a similar presentation to Selective Mutism however has a different cause that is usually related to a trauma in the child’s life. If it is identified as part of our triage or assessment process that the child is presenting with RM, the child with be discharged with recommendations on other services best suited to meet the child’s needs.

Eating and drinking

Referrals from birth

Consider referral when you see the following:

• Baby has difficulty establishing or maintaining a sucking action alongside any coughing, choking, colour change or nasal regurgitation
• Baby is distressed when feeding or straight afterwards, they may also vomit a lot, draw legs up in pain, unable to suck on a teat, weight loss, speak to GP, then refer
• Child unable to chew a range of textures or manage family meals who become distressed, cough, choke at mealtimes or vomit, weight loss
• Eating and drinking difficulties because of a degenerative condition
• It is important to consider that children may present with behavioural feeding difficulties such as gagging on specific textures, rigidity around times of eating, aversive behaviours around temperature of foods, colour of foods, texture of food and smell of food. Referrals for children who only have sensory and behavioural difficulties in relation to eating and drinking would not be accepted.

If you are unsure about whether to refer, please contact the service for further telephone advice.

Language disorder and Developmental Language Disorder (DLD)

Referrals from the child’s preschool year

Parent/carer(s) of children under three years of age and not yet in their pre-school year can access advice and support through:

• Early Communication Support Workers who work in local children’s centres
• Family Hubs accessed through Health Visiting
• Special Educational Needs and Disabilities (SEND) Early Years Service (EYS), as detailed below, which is accessible to all early year’s children.

Once a child is in the year before they start school, a referral should be considered as part of our joint communication pathway with SEND EYS.

For a school aged child, we ask that schools complete two terms of Language Link® intervention, or similar, and then sending evidence and outcomes when referring to us.

Children who have mild to moderate language needs will have their needs met under the Communication Language and Autism Support Service (CLASS) and CITES universal and targeted offer (for example, school consultations, Makaton training).

Moderate language needs are those with children whose language deficit usually interferes with communication and whose scores on standardised assessments are as follows:

• Five to two standard deviations below the mean standard score.
• Second to sixth percentile

Severe language needs are those with children has limited functional language skills and/or communication is an effort. Also, the child may be non or pre-verbal and whose scores on standardised assessments are as follows:

• More than two standard deviations below the mean standard score
• Below second percentile.

Please note for children who are non-verbal that they need to have communicative intent to access intervention.

Speech sound disorder

Referrals from three year

By the time a child reaches their third birthday they should be mostly intelligible although they will still have several speech immaturities. If a child is still very difficult to understand after the age of three, a referral should be considered. This is for children who present with moderate to severe speech sound disorders, including Childhood Apraxia of Speech (CAS).

Moderate needs present as multiple articulation errors and unintelligible to unfamiliar listeners. The errors are consistent and the child has a repertoire of sounds containing both consonants and vowels

Severe needs present as multiple articulation errors and speech is unintelligible to even familiar listeners. Errors are usually extensive substitutions and/or omissions and consonants and vowels are affected.

For school years aged children, we ask that school complete two terms of Speech Link® intervention, or similar, sending evidence and outcomes when referring to us.

Alternative and Augmentative Communication (AAC)

Referrals from birth

This refers to methods used to support or replace speech for individuals with communication difficulties. These methods can range from simple tools like picture boards to more complex electronic devices. AAC aims to enhance or provide a means of communication for those who have trouble speaking or understanding language. AAC is used classed into the following two groups:

Powered AAC: For example an iPad with a communication App (e.g., GridPlayer, Proloquo2Go)