What Should Be Included in a Letter of Wishes for a SEND Family?

There are probably things about your child that you just know.

How they show you when something is wrong. The routines that help. The people they trust. What makes them laugh, what can overwhelm them and what helps when it does.

You may not realise how much lives in your head until somebody else needs it.

A Will can put important legal arrangements in place, but it will not usually contain everything somebody may need to understand about the person you love. That is where a Letter of Wishes can help.

What is a Letter of Wishes?

A Letter of Wishes is usually a separate document that can sit alongside a Will or trust. It is not legally binding, but it can provide personal and practical guidance.

For SEND families, it can help the people involved in the future plan understand the person at the heart of it. It can also help trustees, executors, family members and other supporters see the wider picture beyond formal legal documents.

A Letter of Wishes does not need to be perfect or completed in one sitting. Its value is in capturing the information, relationships and hopes that matter most to your family.

Start with the person

A Letter of Wishes should not simply become a list of care needs or instructions. Start with the person.

What matters to them? What do they enjoy? What helps them feel safe, included and understood? What are their hopes for the future?

Wherever possible, include their own wishes, feelings and preferences. The document should support their voice, not simply record what other people want for them. The aim is to help future supporters understand the person while leaving room for their choices and life to develop.

Communication

Communication may be one of the most important things to record.

How does your child communicate what they want? How do they show that they are worried, uncomfortable or in pain? Do they need extra time to process a question?

Explain any words, signs, visual supports, technology or familiar approaches that help. You can also describe behaviour somebody might misunderstand, what your child may be communicating and how best to respond.

These details can help somebody feel heard and safe. They may also reduce the risk that important preferences are missed when familiar routines change.

Routines, sensory needs and everyday life

You might include information about:

• routines that are particularly important;
• sensory needs or sensitivities;
• food, sleep and personal-care preferences;
• familiar places, activities and interests;
• things that may cause anxiety or distress; and
• what usually helps when life becomes difficult.

You do not have to record every part of everyday life. Focus on what somebody would really need to understand if you were not there to explain it yourself. A concise, practical letter that is regularly reviewed can be more useful than a long document that is never updated.

Important people, relationships and belonging

Who are the important people in your child's life? Which friendships and family relationships would you hope are maintained? Who understands your child particularly well, and who does your child trust?

You may also want to record relevant professionals, organisations, clubs and community connections. Noting why these relationships matter can help preserve security, identity and belonging.

You can describe what good support looks like, including education, work, hobbies, independence, living arrangements or community life. Focus on the principles that matter while leaving room for the person's choices.

Guidance where a trust is involved

Where a trust forms part of the plan, a Letter of Wishes may give trustees useful background about the beneficiary and what matters to them.

It may explain how you hope the trust could support the person's quality of life. However, it does not replace the trust terms. Trustees must act in accordance with the trust and the circumstances at the time.

A Letter of Wishes can support the formal plan by helping trustees understand the values and practical priorities behind it. It should be considered alongside, not instead of, the legal documents.

What can a Letter of Wishes not do?

A Letter of Wishes can be useful, but it cannot do every job. It does not:

• replace a valid Will;
• create a trust by itself;
• appoint an attorney under a Lasting Power of Attorney; or
• give somebody legal authority simply because you would like them to make decisions.

Legal arrangements must be considered separately. The Letter of Wishes adds personal guidance around the formal plan. It does not replace it.

Keep it current

Your child, their wishes, relationships and support may change. What matters at 10 may look very different at 18, 25 or 40.

Review the letter when something important changes, and ask your adviser how an updated version should be dated, signed and stored alongside your wider arrangements. It may be helpful to make sure the people who need to know about it can locate the current version when the time comes.

Where do you begin?

You do not need to write everything you know in one sitting.

Start with one question: if somebody had to step in tomorrow, what is the one thing I would really want them to understand about my child?

Write that down. Then consider what else they may need to know.

A Letter of Wishes can help make sure the knowledge, relationships, wishes and hopes that matter are not held in your head alone. Your first step could simply be to write down that one answer.

This article provides general educational information for England and Wales. It is not personalised legal, tax, financial, benefits, health or care advice. Individual circumstances should always be considered.