Children with T21 (Down Syndrome): team support

Every child with Trisomy 21 (Down Syndrome) is unique and has their own strengths and challenges. 

We are dedicated to supporting your child’s development and wellbeing through a coordinated approach.

Your health visitor, GP or a paediatrician is most likely to have referred you to our Richmond Therapies MDT (Multidisciplinary Team).

Richmond Therapies MDT 

An MDT (Multidisciplinary Team) is a group of professionals from different healthcare and education specialities. 

Our MDT approach ensures that all aspects of your child’s development and health are supported.

The Richmond Therapies MDT includes the following specialities.

• Physiotherapist (PT): helps with movement, strength and coordination.
• Occupational Therapist (OT): supports daily living skills, sensory processing and independence. (Sensory processing means managing information from our senses, such as sight, sound, taste, balance and movement).
• Speech and Language Therapist (SLT): assists with communication, social interaction and feeding skills.
• Health Visiting (HV) team: provides developmental monitoring, and helps families, via emotional support and advocacy, from birth through transition to school.  

For more information on these specialities, see 'MDT specialities in detail' below.

Other professionals

The Richmond Therapies MDT will liaise with other professionals working with you and your child, to ensure a coordinated approach to your child’s care.

These may include the following.

• Paediatrician: oversees general health, growth and development.
• Geneticist: provides genetic (family history) counselling and information.
• Specialist Nurse: offers guidance on medical and developmental needs.
• Dietitian: advises on nutrition and healthy eating.
• Social Worker: provides parent and care-giver support and access to community services.
• ENT Specialist and Audiologist: monitors hearing and ear health.
• Ophthalmologist: checks and manages vision (sight) needs.
• Cardiologist: assesses and treats heart conditions (which are common in children with T21).
• Educational Psychologist: provides strategies to support learning.

MDT specialities in detail

Physiotherapy (PT) 

Children with Trisomy 21 may have poor muscle tone and delayed movement skills.

Physiotherapy aims to do the following.

• Improve strength, balance and coordination.
• Support development of whole-body motor skills such as sitting, crawling, standing and walking.
• Improve posture and overall mobility.
• Provide exercises and strategies to promote independent movement.
• Prevent musculoskeletal issues and support long-term physical health.

Occupational Therapy (OT) 

Children with Trisomy 21 may have difficulties with movement, sensory processing and daily activities.

OT aims to do the following.

• Support development of fine and whole-body movement skills to enhance coordination.
• Assist with daily living activities such as dressing, feeding and toileting.
• Address sensory processing challenges to improve focus and wellbeing.
• Provide adaptive strategies and equipment to support independence.
• Work on handwriting, play skills and school readiness.
• Collaborate with parents, caregivers and educators to implement strategies at home, nursery and school.

Speech and Language Therapy (SLT) 

Children with Trisomy 21 may experience difficulties with speech, language and communication. They may also have difficulties with feeding and swallowing.

The SLT aims to do the following.

• Support early communication skills, including gestures, vocalisations and social interaction.
• Assist development of play and social interaction.
• Enhance understanding and use of language, including work on vocabulary and sentence formation.
• Help with speech clarity and pronunciation.
• Assist with alternative communication methods such as Makaton, pictures and symbols. (Makaton is a language learning programme that uses signs, symbols and speech.) These alternative methods can include high-tech communication devices, if this is right for your child.
• Address feeding and swallowing difficulties to ensure safe eating and drinking.
• Provide parents with strategies to encourage language and feeding development at home.

Health Visiting (HV) team

Children with Trisomy 21 are more likely to experience common health problems. They may also experience delays in reaching developmental milestones.

Your Health Visiting team is part of the Central London Community Healthcare NHS Trust (CLCH). This HV team operates across the borough of Richmond-upon-Thames and is based in the community/local children’s centres. 

Its regular reviews aim to track developmental milestones, and identify delays or conditions particular to children with Trisomy 21.

The team will do the following.

• Monitor growth and development, using T21-specific growth charts, to ensure quality of life and developmental progress. 
• Give guidance on immunisations, and encourage families to follow the appropriate immunisation schedule.
• Work closely with the multi-disciplinary team (MDT) of specialists to ensure coordinated care.
• Offer families emotional support as they adjust to the T21 diagnosis and cope with feelings of stress or grief.
• Support parents in advocating for the rights and needs of their child.

Support you can expect

You can expect the following support from your MDT.

• Regular health checks to monitor growth and wellbeing.
• Early intervention services to improve development.
• Therapies tailored to your child’s needs. These include physiotherapy, occupational therapy, speech and language therapy etc.
• Support in education through school programmes and additional learning resources.
• Guidance for parents and caregivers to help navigate medical, social and emotional difficulties.

How you can get involved

Wherever possible, we encourage you to do the following.

• Attend all scheduled MDT appointments to ensure coordinated care.
• Encourage play and learning activities suited to your child’s needs.
• Get in touch with support groups and networks for families of children with T21 (see More information, below).
• Work closely with educators and therapists to implement strategies at home and school.
• Advocate for your child’s needs and ensure they receive help from all available support services.

More information

Local family groups

Skylarks

Small Steps

Communication and signing

Singing Hands (signing with Makaton)

Makaton (about Makaton symbols and signs)

BBC Tiny Happy People

Physiotherapy

Association of Paediatric Chartered Physiotherapists: information for parents