Life Planning: If You Won a Weekend Getaway, Would You be Prepared to Leave Your Child with a Family Member?

After creating a Vision Plan for your child, the next step is to create a Life Plan. Your Life Plan will serve three main purposes:

  1. It will serve as a benchmarking tool to show annual progress.
  2. It will serve as a repository for recording and storing every important piece of information about your family and your child with special needs, including details about their diagnoses, daily routines, likes and dislikes, key relationships, service providers, medications, etc.
  3. It will serve as a transition guide for the future.

Your Life Plan as a Bench-Marking Tool

Because our lives are fast-paced and hectic, it can be easy to miss the small milestones that your child achieves throughout the year. But those small milestones, when combined together over time, turn into huge milestones that you won’t want to miss. Your Life Plan can help you be more aware of your child’s smaller victories. When you review and edit your Life Plan each year, you’ll be able to appreciate and celebrate your child’s many small accomplishments that took them from where they were a year ago to where they are today.

Your Life Plan as a Repository for Important Information

You know there are many unique details about your family, child, and situation, and these details can quickly change as you care for a loved one with special needs. For example:

  • What medications does your child take? How frequently do they take them?
  • What government benefits is your child currently receiving? If you are on a waiting list for government benefits, how frequently do you need to check or update your status?
  • What therapists, doctors, and other professionals are vital to connect with to promote your child’s current and future care and success? What are the names, contact information, and other relevant details of all of these professionals?
  • How do you document what success looks like for each new therapy, medication, or other resource recommended by your team of professionals?
  • What are your child’s likes and dislikes?
  • What classes is your child currently taking in school? Where do they volunteer and/or work? What are the hours and transportation needs for all of these activities?
  • And so many more details…

At times, it likely feels overwhelming trying to keep track of all of these details and important information about your child. Your Life Plan will ease this burden by providing you with single, centralized location where you can record, store, and routinely update all relevant details about your child and family situation. Then you can easily refer to this information, as needed, without having to attempt to keep every single detail saved in your memory.

Think about it:

How many times have you asked a family member to babysit your child with special needs so you could enjoy a night out or a weekend away, only to begin worrying, the minute after walk out the door from dropping them off, that you didn’t leave thorough enough instructions to properly care for your child?


How many times have you decided not to go out, because it’s just too daunting to even begin thinking about all of the information you’d need to provide a caregiver with if you were to leave your child with them for the weekend?

Let your Life Plan eliminate this stress. Taking the time now to document all of the important details about your child means you won’t have to scramble in the future to think of and record instructions for caregivers if you do decide to take that trip or enjoy a night out on the town!

Your Life Plan as a Transition Guide

Because we started our planning journey by creating a Vision Plan for your child we’ve focused our planning on preparing for and providing an abundant future your child that fits their unique abilities and provides them with every opportunity to live a purposeful life. However, it’s essential to also have a plan in place in case life doesn’t turn out exactly how we hoped.

In the event that you (and/or your spouse) become ill, disabled, or pass away, do you have a plan so that a new caregiver or guardian can step in and easily continue caring for your child in the way that you would like them to?

The third purpose of your Life Plan is to create a comprehensive transition guide that will ensure that any potential future caregiver will be aware of your child’s abilities, daily routines, interests, likes, dislikes, and preferences, future goals, care needs, and much more.

The transition guide portion of your Life Plan should accompany (not serve as) all legal documents your family creates. A detailed transition guide (sometimes referred to as a Letter of Intent) will allow a future caregiver to truly understand your child and to provide the best care and opportunities possible, in the event that you are no longer able to meet these needs.

Your transition guide should be very specific about the individuals who are important to the success of your child’s future and quality of life—including planning professionals, doctors, therapists, service providers, teachers, family members, friends, etc. The more detailed you can make this document, the better. Your time and attention to this component of planning will make any future transition as easy as possible for a new caregiver, but more importantly, for your child with special needs.


Update, Update, Update!

Special Needs Planning is a dynamic process, not a “one and done” item to check off your To Do list. As your child grows and develops his or her abilities, hopes, and dreams will continue evolving, as will many details about your family and unique situation.

For these reasons, we highly encourage families to update their loved one’s Life Plan at least once a year. And like your Vision Plan, when your child is able to contribute, we highly recommend that you include them in the revision process.

On A Personal Note…

From firsthand experience, I know how important it is to create a Life Plan for your loved one with special needs that documents key details and provides a transition guide.

As a family, we have a plan in place for what would happen to my younger sister, Sarah, who has Down syndrome, if anything happened to my parents and they could no longer care for her. My wife and I would step in and become Sarah’s guardians and caretakers.

Generally speaking, I would say that I am very involved in my sister’s life. We see each other frequently. She comes over and spends the night with my wife and I. And we communicate with her through texts and social media platforms basically every day.

However, as familiar with Sarah’s life as I am, there many details that only my parents know about her, since she lives at home with them.

For example: Sarah takes various medications and supplements. What does she take? Why does she take them? When does she take them? Who was the doctor that recommended that she take them? Are they working for her? Why or why not?

I know Sarah takes medications and supplements daily. But that’s where my knowledge of this subject ends. Answers to the follow-up questions are things that only my parents know off the top of their heads about Sarah and her daily life, since they interact with her every day. And keeping track of her medication and supplements is only one small aspect of Sarah’s life that my wife and I don’t know enough details about to properly care for her.

It’s essential for my family to include details such as these in our Life Plan so that when a day of transition arises, it’ll be as easy as possible for my wife and I, and most importantly for Sarah.

Next Up: Resource Planning

The FIVE areas of Special Needs Planning can seem overwhelming, frustrating, and confusing at times. Sometimes negative emotions, such as these, can prevent us from moving forward with our planning. Your Special Needs Planning professionals should have the personal and professional experience necessary to help you overcome any negative emotions that arise as you plan for your child. He or she should know the questions to ask and the strategies to recommend so that your planning process is as easy, efficient, and impactful as possible for your family’s unique situation and needs.

Now that you’re familiar with a Life Plan and understand why this area of planning is essential, you’re ready to learn about the next step of the planning process: Creating a Resource Plan.

Don’t miss the next post of this series: Day 4: Does Your Child have Access to All the Resources They Need to Thrive? How Would You Know? where I’ll explain the ins and outs of Resource Planning, including why you definitely don’t want to skip this part of the planning process! Look for that post tomorrow around 2pm ET on my website ( or Facebook page (@ENABLEsnp)!


And as always, if you have any questions or would like to speak directly with a member of our team, feel free to contact us by visiting We’d love to hear from you and learn more about your family’s unique situation.



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