Your Role in Planning & Why It Matters
As a parent of a person with an intellectual or developmental disability (IDD), you play a key role in shaping their future. You know your child’s needs, routines, joys, and challenges better than anyone else. This insight is essential to planning for a time when you may not be able to provide daily support.
Making a plan is one way you can help your child have a future that feels safe, stable, and fulfilling. Even if it feels overwhelming or emotional, planning is an act of love. It’s about giving your child the best possible life, with or without your daily involvement.
Building a Supportive Team
Open communication with your child and a core planning team can ensure everyone is working toward the same goal. Create a team that shares responsibility and helps carry your knowledge forward.
Your planning team might include:
- Family members and close friends
- Support staff and case managers
- Doctors, therapists, or other professionals
- Trusted community members
Talk early and often. Share details about your child’s medical history, daily routines, communication needs, social preferences, and more. Ask others what they’re able to help with, and be honest about your own limits too.
Tips for Planning With Your Child
Every person deserves a say in decisions about their own life. Make sure your child is included in any conversations or plans about their future. Here are some tips to help make that inclusion meaningful.
Use Plain Language & Visual Supports
Avoid complicated words or legal terms. Use simple, clear language your child understands. Visual supports, like pictures, videos, or charts, can help explain choices. This makes it easier for your child to understand and take part in the planning.
Visit Programs & Places Together
Seeing a place in person can help your child understand what it’s really like. Visit potential job sites, housing, or programs together. This can help them form their own opinions, and it gives you a chance to see what they respond to.
Watch How Your Child Responds
Your child may not always communicate with words. Pay attention to how they act and what makes them happy or uncomfortable. Nonverbal cues, like body language, facial expressions, or behavior, can tell you a lot about their preferences.
Respect Their Preferences
Even if your child’s choices are different from what you imagined, try to listen with an open mind. The plan should reflect what they want and not just what others think is best. When people feel respected, they are more likely to feel confident and supported.
Ready for your next step?
Let’s Build a Future Plan
A written future plan—sometimes called a letter of intent—goes beyond legal and financial documents. It shares the person with IDD’s wishes and daily routines, so the people who help them know how to provide support and can help make decisions with confidence.
A future plan can guide health care, finances, and lifestyle choices. It also provides information about important people, including caregivers, support workers, and medical professionals.