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How to Start Planning Financially for Tomorrow with Special Needs

Updated: Apr 10

By Karen Darby

One of the toughest questions we ask as parents is what will happen to my child when I’m no longer able to care for them?

This is a universal question, but when it comes to a child with exceptional needs, this question is never outgrown. As a parent, what can you do to help ensure your child’s financial security? Many parents have an idea of what they need to do, but the complexity involved becomes a hurdle, and figuring out where to start can be overwhelming when emotions are mixed in with the planning.

Most of the parents I meet have a child between 13 and 18 years old. This is a common age because they are through the difficult and hectic years of diagnoses and the early learning stages, and now, they are at that age of transition. They are starting to think about applying for government benefits, guardianship versus power of attorney, and what the next chapter after school in their adult life will look like. Upon meeting with parents, they typically express their concerns about saving for their child’s lifetime care needs. They know their child won’t be able to have a job that would provide the same lifestyle they are accustomed to, and they typically don’t know where they stand financially for their own retirement goals, let alone saving for their child’s life after they are gone. This is an emotional conversation to have, and it’s important to be able to express fears and concerns so they can be addressed.

I remember asking a parent once why they think so many families don’t meet with a professional to address this type of planning, and she said it’s because we can’t even think about not being there to care for our kids. I’m sure everyone can relate to that. Making these decisions and realizing that day will come when you won’t be the primary caregiver for your child is difficult to accept. The reality is, if you don’t have a plan in place, I can guarantee the outcome will be far worse for your child than the temporary discomfort you feel during these conversations. That’s when the experience of a professional financial advisor can help you and your family.

What is it like when you meet with an advisor to discuss your situation? You want to find someone that has experience working with families that have a loved one with special needs. The right professional can help you with a coordinated plan that centers around your child and encompasses their government benefits, guardianship, power of attorney, a letter of intent, special needs trust, and an ABLE account. The first step in working with a financial professional should be to get an understanding of where you stand today and what your current and future goals are for yourself and your children. Having more than one child can add to the complexity in your plan as everyone feels differently about equalization of financial resources. You want to make sure your needs and goals are heard and understood by any professional you work with. Be prepared for this process to take some time as there are a lot of moving parts.

Remember, what you put in, you get out. If you are open and honest and take the time to meet with your advisor and gather your financial statements, you will have a more robust plan.

During this process, you will be asked some difficult questions, and sometimes this is what stops people from seeking advice. Take some time to think about what you would like to accomplish prior to meeting with the financial professional, and know you can always make changes in the future. The best advice I can give you is to create a plan as if something were to happen to you tomorrow and then review it annually to update as life changes. Some of the toughest questions you will be asked are the what-ifs. What will happen to this plan if you or your spouse become disabled and can no longer work? What will happen in the event of an unexpected death? What will happen if you have a long-term care event? Do you have the resources to sustain one of these events? Who will take care of your children when you are no longer able to? These questions are uncomfortable, and no one wants to think about the outcomes, but they are necessary. You want a plan that accounts for the unexpected because life has a way of not going as planned. Preparing for the unexpected will be uncomfortable, and you may find that you and your spouse have different views and opinions. Having a professional to help guide you and advise on what they have experienced will help you make an informed decision that is right for all involved.

In the end, you will have more clarity regarding your finances. You will have a plan that encompasses your whole family. Siblings will understand the plan and know what their part is and what is expected of them. Some parents do not want to burden a sibling with the caregiving or financial responsibility of caring for a sibling with special needs; this will be different for each family. Putting the work in now will give you peace of mind, knowing that you planned for the expected and unexpected, and no matter what happens, your family and loved ones know what your wishes are. I hope this helps parents who are unsure of whether or not to seek advice. If that is you, I hope you find someone you feel comfortable with and will take the time to get to know your family. Please feel free to reach out to me with any questions you may have. I always enjoy hearing from other parents.

For free resources on managing diagnoses, mobility, and accessibility support, self-advocacy, personal rights, educational rights, occupational therapy, mental health support, schools and camps, transitioning to adulthood, job opportunities, financial planning, supporting the family/caretakers, subscribe to Exceptional Needs Today. Subscribing to our award-winning e-magazine is free, and it enables us to connect with more readers, helping us support the special needs community more effectively. We publish a new issue every quarter - delivered straight to your email.

Karen Darby is a Wealth Management Advisor with Jacobi Capital Management, a registered investment advisor. Jacobi Capital was founded on the idea of thinking things through backwards. This view helps to identify potential risks before implementing strategies for clients. Karen has a decade of experience in the financial services industry, focusing on working with families that have a loved one with special needs. She is passionate about helping her clients get clear on their financial goals, create a plan, and implement strategies. Karen enjoys spending time with her two sons and is involved in many organizations within the community.

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