Make a referral to CITES

Referrals accepted

Age criteria

Children and young people from birth to 18 years but transition to adult services would occur within that time at an appropriate age and stage. Age 16 to 19 (up until young person 19 – last day of 18) if in full time education in East Sussex.

Full time education includes post-16 colleges that are equivalent to secondary school education.

For colleges that have therapy provision as part of their offer, the college therapist would meet the needs of the students.

In scope

  • moderate to severe global development delay
  • neurological conditions affecting development and posture such as cerebral palsy, muscular dystrophy
  • rehabilitation following multi-level surgery who are known to CITES
  • acquired brain injury, for example post encephalitis/near drowning, note this does not include intensive rehabilitation and children and young people should be ready for discharge to community therapy
  • oncology
  • palliative care
  • syndromes affecting neurological development
  • developmental co-ordination disorder (DCD) – subject to DCD pathway criteria
  • eating and drinking difficulties relating to neurological developmental
  • respiratory conditions that require teaching of clearing of secretions such as cystic fibrosis
  • orthotic provision for children on active CITES caseload
  • contribute to paediatrician led ASD diagnostic pathway for children in primary education
  • language – subject to completion of specified programmes in settings and schools
  • phonological disorder
  • developmental verbal dyspraxia
  • voice disorders
  • hearing impairment
  • cleft palate and non-cleft velo-pharyngeal insufficiency
  • dysfluency
  • selective mutism
  • augmentative and alternative communication
  • juvenile idiopathic arthritis
  • Talipes/Ponseti
  • hip dysplasia/Pavlik harness
  • severe hypermobility if condition is significantly impacting on gross motor functional ability
  • Torticollis
  • Erb’s palsy
  • post orthopaedic surgery for children on CITES caseload with pre-existing developmental or neurological condition
  • chronic fatigue syndrome/chronic regional pain syndrome – where children are under the primary care of CAMHS/ primary mental health services
  • severe sensory processing difficulties in children over three years, affecting function in at least  three defined areas of self-care or activities of daily living. Please note this does not include attention in the classroom
  • serial casting post Botox.

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. This includes children with an underlying neurological condition, motor-planning difficulties, global developmental delay, ASD (where skills are not in line with diagnosis), upper-limb dysfunction, palliative care and life-limiting conditions. There is an expectation that all school-age children 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.

Postural management

Occupational therapists work with the child and family 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 make sure 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, bath-boards, grab rails and shower-chairs
  • toileting: Commode, toilet-frames, specialist modular toileting systems
  • manual-handling equipment such as mobile hoists, transfer-boards, slide sheets.

Adaptations (birth to 18)

Please note, over 18s 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 be considered where children have accessed the Jump Ahead programme or Sensory Circuit programme but there are still ongoing difficulties such as:

  • 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 three times a week for four academic terms.

Visual perception

Visual motor integration impacts on handwriting and letter formation. Please note we do not deliver handwriting programmes but will assess and advise schools regarding implementation of appropriate programmes where applicable.

Sensory processing

There should be evidence of severe sensory processing difficulties in at least three defined areas of self-care or activities of daily living such as using cutlery, managing buttons, dressing, toileting difficulties, pencil grip or personal hygiene. Attention does not count as an activity for daily living. We are not commissioned to provide interventions for children with sensory processing difficulties under age of three unless they are under a specialist Tertiary Centre such as Evelina Children’s Hospital or Great Ormond Street Hospital for sensory processing difficulties.


Where applicable OT will provide upper-limb programmes to promote function and development of self-care. Complex cases such as children with neurological impairment may be provided with a thumb or wrist splint where appropriate.

Neurological concerns or conditions affecting development

Please refer for any of the following:

  • all children with a new diagnosis of Cerebral Palsy (CP) or showing signs of an evolving motor disorder
  • children moving into the area with an existing diagnosis of CP who have functional difficulties
  • babies and children presenting with any of the following:
    • abnormal tone
    • asymmetrical movement or unusual movement patterns. W sitting, bottom shuffling and in-toeing are not indications of an abnormal movement pattern unless abnormal tone is present
    • functional difficulty for example difficulty standing or walking and out of line with normal developmental parameters
    • delayed milestones or poor quality of movement

Acquired brain injury

CITES do not deliver intensive rehabilitation. The child should be ready for discharge to community therapy services

Neuromuscular conditions which involve a progressive loss of functional motor skills such as Charcot Marie Tooth, Spinal Muscular Atrophy, metabolic disease, muscular dystrophy)

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

Developmental concerns including moderate to severe global developmental delay and syndromes

Please see developmental table below. Developmental norms are taken from Mary Sheridan, Birth to Five Years. 4th Edition.

Please note: Bottom shuffling is not an abnormal movement pattern. Many children who bottom shuffle instead of crawling to move around the floor start walking at a later age.

Activity Usual milestone Refer to Physiotherapy
Independent floor sitting five to nine months 10 – 12 months

Independent rolling - From front to back

From back to front

five to six months

six to seven months

eight to 10 months (may need referral to physiotherapy earlier if there is a concern about head control)
Pulling to stand seven to 12 months 13 – 16 months
Cruising around furniture nine to 16 months 17 – 20 months
Independent walking nine and a half to 17 and a half months (children who bottom shuffle are usually delayed in walking 17 – 28 months) 18 ½ months
Jumping two and a half to three years four years (a child who is not jumping at three is likely to have been known to the service previously for delayed walking)
Climbing stairs three years (up and down holding a hand or a rail, usually two feet per step) four years (a child who is struggling with stair climbing at three is likely to have been known to the service previously for delayed walking)

Developmental coordination disorder

Children with motor coordination difficulties would be seen either by an occupational therapist or physiotherapist. Please see OT guidance on motor coordination difficulties for more information.

Toe walkers

The service would not normally accept referrals for toe walkers with no obvious neurological signs. Children should be referred if:

  • there is asymmetry
  • not possible to achieve 90 degrees at the ankle and there are associated developmental concerns or altered muscle tone. Where there are no associated concerns, or if the toe walking is intermittent then referral to musculoskeletal physiotherapy service provided by East Sussex Healthcare Trust is more appropriate
  • toe walking with unusual body posturing or movement.


Metatarsus adductus imageIt is very common for young children’s feet to turn in when they walk. This is a common normal variant.

Referral to physiotherapy is only indicated if there is:

  • significant asymmetry
  • pain
  • metatarsus adductus where it is not possible to passively correct the position of the forefoot to midline.


This provision is only for children already on the CITES caseload. No physiotherapy intervention is indicated in children with flat feet or feet that turn out. If pain is present then a referral to podiatry services provided by East Sussex Healthcare Trust is advised.

Musculoskeletal problems

Children presenting with musculoskeletal problems should be referred to the appropriate Musculoskeletal (MSK) Physiotherapy Service.

We do accept referrals for babies with musculoskeletal problems this could include the following:

  • congenital foot abnormalities e.g. Talipes (club foot)
  • preferential head turning (Torticollis)
  • hip dysplasia (DDH)
  • shoulder dystocia with apparent neuromuscular signs (Erb’s Palsy)

Chronic fatigue syndrome and chronic regional pain syndrome

Children with chronic fatigue syndrome and chronic regional pain syndrome can only be referred to CITES physiotherapy where they are under the primary care of CAMHS. Physiotherapy can advise on graded exercise and pacing of activities.


Only refer to CITES physiotherapy when the condition is significantly impacting on gross motor functional ability such as causing sleep disturbance on a regular basis or impacting on attendance at school.

Juvenile idiopathic arthritis

Referrals are accepted for children with functional difficulties at home or at school who require advice on long term management of their condition.

Respiratory conditions

Please discuss all referrals requiring physiotherapy intervention for respiratory difficulties on an individual basis. Currently CITES is not commissioned to carry out this work. CITES is presently involved in supporting the Cystic Fibrosis Clinics held by East Sussex Healthcare Trust.

Stammering referrals from 27 months after the integrated health review

Many children experience non-fluency when they start to talk in phrases and sentences between two to three years. Usually this non-fluency subsides within three to six months. If there is no sign that the fluency is improving after this time we would advise a referral. In particular where the child is aware of their fluency difficulty we would advise immediate referral.

Selective mutism referrals from 27 months after the integrated health review

Selective mutism is more than shyness alone. Children who have selective mutism will talk freely in some situations such as at home but will have strict rules about where they talk and who they talk with. 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 better explained by another behavioural, mental or communication disorder. We would always advise referral where selective mutism is a concern; outcomes are much better with early intervention.

Eating and drinking referrals from birth

Consider referral when you see the following:

  • baby has difficulty establishing or maintaining a sucking 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, may become distressed, cough, choke at mealtimes or vomit, weight loss
  • eating and drinking difficulties as a result of 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 behavioural difficulties in relation to eating and drinking would not usually be

Speech sound delay/ disorder referrals from three years

Early years: Children with significant speech sound delay/disorder aged between two and three years will usually present with a significant language delay and any referral would be accepted on this basis (see below). By the time a child reaches their third birthday they should be mostly intelligible to most adults 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.

School years: Please append two term’s evidence of the child’s Speech Link® programme.

Language and communication needs/developmental language disorder referrals from 27 months after the integrated health review

Early years: parents/carers of children under the age of 27 months are able to access advice and support through universal services and early communication support workers who work in local children’s centres.

For children over 27 months where a language or communication is not progressing in line with developmental norms a referral should be considered. Nursery settings should consider using the East Sussex Speech, Language and Communication Monitoring Tool to evidence a significant communication difficulty.

School years: Schools should refer via the ISEND front door (see page 13). Please append two terms’ evidence of the child’s Language Link® programme. Referrals for language and communication needs are now supported through a joint pathway between CITES and CLASS. CLASS will provide universal support and targeted support for language and communication as needed. Cases will be passed to CITES as part of a package of support where this is appropriate.

As well as working on the development of understanding and spoken language SLTs will also advise on alternative and augmentative communication (AAC) using signs and symbols where needed.

Voice referrals from birth

Children with voice problems are usually referred through ENT or other specialist tertiary centre. If there are concerns about a child’s voice quality (such as hoarseness, voice loss, etc.) this should be investigated via ENT services first. If you are unsure about whether or not to refer, please contact the service for advice.

Cleft palate referrals from birth

Children with cleft palate sometimes experience feeding or speech sound problems. They are usually referred by tertiary services but can be referred directly (please see under speech sound delay/ disorder and eating and drinking difficulties).

Hearing impairment referrals from birth

Children with hearing impairment are usually referred through Audiology or ENT or other specialist tertiary centres. If you think a referral may be needed, please contact the service for advice.

Severe developmental delay and neuro developmental disorders referrals from birth

Early years: A referral should be considered for early years children with severe developmental delay however we would prefer that referrers don’t simultaneously refer to both ISEND Early Years and CITES as this causes duplication. You are welcome to contact CITES or ISEND Early Years by phone to discuss further if you are unsure. If a child is already known to ISEND Early Years please discuss with your Early Years practitioner before referring.

School years: For pupils in special schools, the teacher or parent should discuss with any CITES colleague who regularly goes into the school. They will be able to arrange for a CITES SLT to discuss or review the pupil’s speech and language needs. For pupils in mainstream schools, please see under language and communication needs/ developmental language disorder above for how to refer.

Downs syndrome referrals from birth

All babies with Downs Syndrome are referred by their health visitor at approximately six months for a speech and language advisory session. Children will receive a further advisory session in their pre-school year to make sure a smooth transition into school. If a child has speech, language and communication needs or eating and drinking difficulties they can be referred at any other time on the basis of these needs.

Autism spectrum condition (ASC) referrals generally from 27 months after the integrated health review but will be accepted earlier where there are profound communication needs

SLTs work with paediatricians as part of the multi-disciplinary assessment pathway (via paediatrician referral). We also support the communication needs of children with ASC through the language and alternative augmentative communication pathways.

Acquired brain injury referrals from birth

Referral for children with an acquired brain injury is always through specialist tertiary centres.

If you are still unsure whether or not your referral will be accepted, please ring our Therapy One Point on 0300 123 2650.

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East Sussex CZone

For school-age children with language and/or social communication difficulties only.

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