Why Transition Feels So Hard

As parents, it’s never easy to see our children grow up. But for families of young people with additional needs, it’s especially challenging. Our young people have always relied on us for so much more — care, communication, advocacy, organisation — and suddenly, we’re told it’s all about them and their choices.
It can feel like being pushed to the sidelines when, in reality, they may still depend on us for everyday care.

Moving into adult services is scary. In children’s services, parents are often integral to every decision; in adult services, we can suddenly find ourselves excluded. For many families, this shift comes as a shock — for example, finding that parents are no longer automatically allowed to stay with their young person during hospital stays, or that adult wards and systems expect much greater independence than is realistic.

Staffing levels are often lower, and support looks very different. In adult services, there’s no single coordinating professional like a paediatrician — your GP often becomes the main point of contact, which can be daunting for those with complex needs.

When Should Transition Planning Start?

Transitions are meant to happen gradually — not all at once. Officially, transition planning should start around age 14 and can continue up to 25, with most young people moving into adult services around 18. But too often, planning begins far too late — sometimes just months before the move — which leaves families scrambling to put things in place.

Early planning makes everything smoother. It helps everyone know what’s happening, who’s involved, and what to expect. Even with early preparation, the process can still feel overwhelming, but starting conversations as soon as possible makes a huge difference.

What Good Transition Planning Looks Like

A good transition plan should cover:

• Who will be involved (professionals, key workers, and services)
• What choices your young person has — around education, care, housing, and support
• How those options will be funded
• Where they’ll go — and what support will be available there
• Whether their EHCP (Education, Health and Care Plan) will continue

It’s also vital to plan for finances. Young people may need to claim Universal Credit or PIP, but it’s important to understand how that money is used — especially if part of it will need to go towards paying for care.

Families should also think ahead about legal roles. Parents might need to consider Power of Attorney or Deputyship, depending on their young person’s capacity to make decisions. Getting clear advice early can prevent a lot of stress later on.

Health, Social Care, and Coordination

Health and social care teams don’t always agree on who funds what, so clear communication is key. Regular multi-disciplinary team (MDT) meetings — where everyone is in the same room — help keep things coordinated and prevent confusion.

If the young person is unwell, families may also need to consider whether end-of-life planning should take place alongside transition planning. This can be an incredibly painful subject, but it’s important that the young person’s voice is heard and their wishes respected.

Involving the Young Person

Transition isn’t something that should happen to young people — it should happen with them. This is their life and their future. Encourage them to be involved as much as possible in planning meetings, decisions, and goal setting. Some young people may also need an advocate to help express their wishes and make sure they’re heard.

What Families Can Expect

Ultimately, a good transition should leave families feeling confident, young people feeling empowered, and everyone understanding what’s next. It should build independence, improve quality of life, and make sure support doesn’t disappear overnight.

But when it goes wrong, it can feel isolating and frightening — like falling off that cliff again. That’s why early planning, open communication, and the right support are so essential.

Helpful Resources

One useful tool many families find helpful is the Together for Short Lives Transition Guide. Don’t be put off by the name — while it’s designed for children with life-limiting conditions, the central section is a fantastic general checklist that works for any young person moving into adult services. It’s practical, easy to understand, and a great starting point for planning.

Getting Support

Support is available. Many family support services and charities can help navigate the transition process, work with professionals, and make sure families access the right entitlements early. With the right planning and help, young people can thrive and families can feel more confident about the future.

Transition is a big step — emotional, practical, and financial — but it doesn’t have to feel like falling off a cliff. With preparation, communication, and support, families can build a bridge instead.

Find Out More

If you’re preparing for your young person’s transition, the charity Together for Short Lives has produced an excellent Transition Checklist to help families plan ahead and make sure nothing gets missed. It’s a clear, practical guide that can help you feel more prepared for this next stage.

Visit our Family Support Page to find more support from Little Miracles, or complete the form below to request help from one of our team.