Trisomy 21 Toolkit for Transitioning to Adult Medical Care
The trisomy 21 toolkit for transitioning to adult medical care outlines steps individuals with trisomy 21 (Down syndrome) or other intellectual disabilities can take toward building independence, planning for the future, and transitioning to adult healthcare providers. Not every worksheet will apply to every family; you can pick and choose which worksheets will be most helpful to you.
Every person with Down syndrome is unique, not only in terms of their interests and talents, but also when looking at developmental skills. Regardless of their developmental level, every individual should be empowered to participate as their own advocate.
For individuals with significant developmental limitations, parents and other helpers may play a more prominent role, but the objective remains the same. The key is making sure that goals are realistic, achievable, and tailored for the individual.
If your child has an intellectual or developmental disability and you’re planning for their transition from pediatric to adult healthcare, these worksheets can help you stay organized while you plan for the future.
Download and print any of the worksheets below that may be helpful in your child’s transition to adulthood. Consider adding them to your Care Binder for easy reference.
- Worksheet #1A: Transition Timeline (Pennsylvania)
- Worksheet #1B: Transition Timeline (New Jersey)
- Worksheet #2: Letter to Your Doctor
- Worksheet #3: Readiness Checklist
- Worksheet #4: My Goals
- Worksheet #5: About Me
- Worksheet #6: My Medical Issues
- Worksheet #7: Healthcare Plan
- Worksheet #8: Preparing for a Doctor Visit
- Worksheet #9: The Day of the Doctor Visit
- Worksheet #10: How Did Your Doctor Visit Go?
- Worksheet #11: Financial Considerations
- Worksheet #12: Legal Planning and Social Service Support
- Worksheet #13: Personalized List of Resources
- Worksheet #14A: Contact Card (Young Adult)
- Worksheet #14B: Contact Card (Parent)
Consider these tips
- If possible, prioritize learning skills for personal care, such as dressing and hygiene, as this goes a long way toward independence and privacy. Each basic skill provides a foundation that allows advancement to a more complex task. Worksheet #3: Readiness Checklist is a good starting place to identify areas that need additional work.
- Celebrate small achievements. Confidence is important for everyone!
- Go to public places often to practice skills like greeting new people and navigating new scenarios.
- Always make it a point that people should talk directly to the individual with trisomy 21 first (including your child’s doctor).
- For those who find reading and writing especially challenging, using a voice recording device (such as on a smartphone) can be a substitute for taking notes.
- Non-verbal individuals should also be involved in their healthcare, to whatever extent possible. For some, that may mean simply handing a form to the doctor.