As a parent of a child with special needs, you've spent countless hours making decisions to help your child thrive. You've advocated at school meetings, coordinated with medical professionals, and carefully considered every aspect of their care. But have you thought about including your child's wishes in your estate planning? While legal documents and financial arrangements are essential, incorporating your child's preferences and goals can make your plan more meaningful and effective. Let’s look at how you can incorporate your child’s wishes into your plan by outlining several actionable strategies.

Understanding What Matters to Your Child

Your child has unique interests, preferences, and dreams - just like anyone else. Maybe they love specific activities, have favorite caregivers, or dream of living in a particular place. Perhaps they have strong opinions about their daily routine or the foods they eat. These preferences matter, and you can build them into your estate plan. Start by observing and documenting what brings joy to your child's life. Ask them questions if they can communicate their wishes, or consult with their caregivers and teachers who know them well. This information becomes invaluable when creating instructions for future caregivers and trustees.

Creating a Living Document of Your Child's Preferences

Once you know what matters to your child, creating a living document of your child's preferences is a meaningful way to ensure that future caregivers understand and respect the unique qualities that make your child feel secure and valued. Consider starting a journal or digital document that captures their favorite activities and hobbies, along with the routines that help them navigate each day with confidence.

Describe the foods they love, as well as any dietary restrictions, and note any communication methods that help them express themselves most comfortably. Include details about the people who provide a sense of comfort and the places where they feel most at ease. Reflect on the activities or situations that may cause them anxiety or distress, and document any dreams or goals they've shared with you, even those that may seem small.

Over time, this document will grow into a deeply personal guide that can be incorporated into your estate planning documents, empowering future caregivers to honor and understand your child's evolving needs and preferences. Remember to revisit and update it regularly as your child grows and their interests change, keeping it as current and complete as possible.

Finding the Right Balance of Independence and Support

Many parents struggle with determining how much independence to give their child with special needs. You want to protect them while allowing them to grow and develop their identity. Your estate plan can reflect this balance. If your child can participate in decision-making, consider including provisions that give them appropriate control over certain aspects of their life. This might mean allowing them to choose activities, select personal items to purchase, or have a say in where they live. You can structure your plan to provide guidance and protection while still respecting their autonomy. If you need support with this, read to the bottom of this article to find out how to book a call with me to learn more. 

Incorporating Decision-Making Opportunities

Creating a framework for your child to practice decision-making skills can be a powerful way to foster their independence while still providing the guidance and safeguards they need. One approach is to set up a small discretionary fund that they can manage, giving them a taste of financial responsibility within safe boundaries. You might also consider involving them in healthcare decisions, helping them understand their options and preferences as they become part of the decision-making process.

Another valuable aspect is developing guidelines for recreational activities so they can explore their interests and passions in ways that feel safe and supported. You could also establish a system that allows them to express their preferences about living arrangements, which can help them feel more in control of their environment. Regular meetings with trustees or guardians are another way for them to communicate their wishes, creating a channel for ongoing dialogue as they grow.

The goal is to nurture your child’s autonomy while ensuring they have the structure and protection needed to thrive. This balance allows them to explore their capabilities and make meaningful choices, always with a foundation of security and support.

Creating a Support Network That Understands Your Child

Your estate plan should also include provisions for maintaining and nurturing relationships with people who understand and support your child's unique needs and preferences. Consider:

• Identifying key people who know your child well
• Creating roles for trusted advisors who can advocate for your child
• Establishing a care team that includes both professionals and family members
• Setting up regular family meetings to ensure everyone stays connected
• Providing resources for maintaining important relationships

Making Your Plan Flexible for the Future

As your child grows and develops, their needs, abilities, and wishes will naturally evolve. A well-designed estate plan using my process called Life & Legacy Planning will have the flexibility to adapt to these changes, with provisions that allow trustees to adjust support and care arrangements accordingly. One essential tool in maintaining this flexibility is a letter of intent - a living document that captures your child's current preferences, abilities, and goals. While not legally binding, this document serves as a crucial guide for future caregivers and trustees, helping them make decisions that truly align with your child's wishes and personality. 

Finally, to ensure your plan remains effective, our Life & Legacy Planning process includes a regular review system with updates to your letter of intent and quarterly check-ins with your child's current caregivers and support team. These reviews provide opportunities to document significant changes in your child's preferences or needs, maintain open communication with trustees and future guardians, and update your estate plan when circumstances change. This ongoing attention helps ensure that your plan continues to serve its primary purpose - supporting your child's well-being while honoring their voice and choices.