Question: We are stuck. Our planning has been stopped in its tracks because my husband and I cannot decide on the next caregiver, the next Guardian for our 14-year old son with autism. What can we do?
The selection of next caregiver and future Guardian is many times the most difficult decision parents have to make in special needs planning.
This is the person or organization that will be overseeing your child’s daily life, making decisions about his/her future, education, healthcare, living arrangements, job opportunities, and more.
It is quite challenging for parents to see anyone other than themselves in this position. As hard of a decision as choosing the future caregiver is, if parents don’t make it, then the court system and the state you live in will make the decision for you after you are gone!
It is simple—either you choose, or you leave the decision to a third-party system that knows nothing about your child. That statement can seem cold and uncaring, but it is exactly the opposite.
It is critical you know the situation your child will be thrown into in the event you are no longer here if you have not made a choice on his/her Guardian.
Most parents do not have the perfect choice or even a good choice to be the next Guardian, and the reason for that is because no one cares for his/her child like a parent. Most parents are also anxious about leaving the responsibility of their child with autism to someone else.
This is where the rest of the plan comes into play. If you are able, set up a comprehensive plan explaining to the next caregiver all he/she needs to know about government benefits, future living arrangements, your child’s education plans, behaviors, therapists, doctors, prescriptions, sensitivities, diet, and present-day life.
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Also include what to expect in adult life, and of course, the projected financial cost of your child’s lifetime support needs and what arrangements you have made to ensure the money will be available. Do you believe this information will give your son/daughter’s next Guardian some peace of mind?
Do you think having a roadmap with this detail would give you peace of mind? If your answer is “Yes,” you are correct. We hear it from future caregivers every day, “I just need to know the plan. I need to know what I have to do. I need to know where to get help. I will need support.
Who do I call?” You can actually make the choice of the next caregiver or Guardian that much easier if you can provide him/her a Guidebook and you can prepare him/her for the job.
Before having a complete plan, it is very common for parents not to know who the best Guardian for their child may be. Your Guardian decision will become clearer as the rest of your plan develops and comes into focus.
It will still not be an easy choice, but having a detailed plan with pointed conversations regarding the people or organizations that may be options to be your son’s Guardian will provide you more clarity in making the right choice.
This article was featured in Issue 107 – Caring for Your Autism Family