Step-by-step route from pregnancy/newborn diagnosis through school and adult transition.
| Stage | What to do | Important notes | Who/where to ask | Sources |
|---|---|---|---|---|
| Pregnancy screening or diagnosis | Ask for balanced information, time to make decisions, genetic counselling if relevant, and contact with DSA/DSUK/PADS. | Screening estimates chance; diagnostic testing confirms. Parents should not feel pressured either way. | Midwife, fetal medicine, genetic counsellor, DSA/DSUK/PADS | Down's syndrome;Positive About Down Syndrome |
| Birth to first month | Confirm diagnosis, cardiac checks, feeding plan, blood tests where needed, hearing screening, family support and named paediatrician. | Keep copies of letters and results in one folder. | Neonatal team, paediatrician, health visitor, feeding/ | Down's syndrome;DSMIG medical surveillance |
| 0-2 years | Early support: health visitor, paediatrician, physiotherapy, , portage, local authority early years , if extra care needs exist. | Start a development diary with photos, care notes, sleep, feeding and therapy evidence. | Health visitor, portage, physio, , early years | how to help CYP;GOV.UK children |
| 2-4 years/nursery | Plan inclusion, visual routines, toileting support, communication plan, medical care plan and early request for if needs are beyond normal nursery support. | Nursery evidence is powerful for / reviews. | Nursery , early years inclusion team, health professionals | needs assessment;DSUK Starting School |
| Starting primary | Meet school early, create a one-page profile, agree //physio carry-over, risk assessments, personal care and a transition plan. | Ask who will deliver what, how often and how progress will be measured. | School , teacher, , therapists, team | DSUK Starting School; |
| Primary years | Review learning, speech, social inclusion, independence, behaviour, sensory needs, friendships and medical needs at least termly. | Behaviour changes can be unmet communication, pain, hearing, vision, sleep or anxiety. | School, paediatrician, therapies, family support | how to help CYP;DSMIG medical surveillance |
| Secondary transition | Start transition planning in Year 5/6 if possible. Visit settings, plan independence, timetable support, peer education and travel safety. | Check names the setting and provision in clear, specific language. | Primary and secondary , , therapists | ;NICE NG213 |
| Teenage years | Review puberty, relationships, consent, online safety, mental health, independence, sleep, college/work goals and transition around 16. | Use accessible resources and protect dignity while planning safety. | School/college, , social care, youth services | support for adults;GOV.UK |
| 16-25 transition | Plan college, supported internships, social care, , appointeeship if needed, travel training, health transition and adult services. | Do not wait until crisis; ask for transition meetings early. | College, , adult social care, , learning disability team | NICE NG213; |
| Adult life | Plan meaningful activity, work, day opportunities, supported living, friendships, relationships, money, health checks and family carer support. | Adults still need aspiration, rights and tailored support. | Adult social care, , DSA, Mencap, supported employment | support for adults;Down's Syndrome Association |