The Top 7 Questions to Think About When Planning for a Child with Special Needs


April 20, 2021

Financial planning for a child with special needs can be overwhelming, but with the right help and financial preparation early on, you can make a big difference for you and your child’s future. With 10+ years of experience, Skylight Financial Planner and Director of Development Katy Bryan has worked with Skylight’s team of SpecialCare Planners for years, and we recently sat down with her to talk about the best financial planning practices for families who have a child with special needs.

To better understand Katy’s top seven questions, it is crucial to know what special needs planning is and how it differs from more traditional planning. Typically, a family without a child with special needs “plan for their retirement, primary or secondary education, paying off debt, long-term disability, long-term care, and life events that may happen,” Katy explained. For family’s who experience a death or disability, “it is not only emotionally crippling but may have a financial toll on the family, as well.”

Families who have a child with special needs, on the other hand, “have to plan for both their own lifetime needs, in addition to their child’s lifetime needs. It is almost like having two long-term care plans to prepare for, one for them and one for their child.”

Katy’s biggest piece of advice for a family who has a child with special needs is to “be able to answer certain questions.” Through her experience working with families with special needs, she knows that “the #1 concern that they have is ‘if something happens to me, what will happen to my child?’” While planning for all the other stages of a diagnosis, financial planning can become less of a priority. Katy says, “putting financial planning on the backburner can have dire consequences for a family, but for a family who has a child with special needs, it can be devastating.”

Katy’s solution to this challenging problem is thinking of these seven key questions, which can be lifesavers and give families confidence in their financial future:

1. Is my child registered with the County Disability Board? Do I qualify for any benefits/waivers?

“Registering allows you to receive information from the county board on what new federal changes are being made, benefits that may be important to apply for early on, and any programs you may be eligible for.”

2. If something happened to me and I could no longer take care of my child, who would physically and emotionally be able to take care of my child in the way that I would want them to be taken care of?

“We all have family and friends that we think would take care of our children, but have you ever asked them? Using a letter of intent, which talks about your day-to-day life and your child, may help open that conversation and make sure they are ready emotionally, physically, and financially if they are ever needed.”

3. What financial resources would my family need to maintain the lifestyle, medical costs, therapies, etc., that they currently receive if I could no longer provide these?

“Determining the cost of care is different for every family. Talking through what is important to your family with a financial professional can help you determine what amount may be needed, what options are available to fund that need, and government programs are available that can help ease those financial needs.”

4. Who will manage my child’s financial funds if I cannot manage them due to death or disability, and how do I make sure those funds are set aside specifically for my child with special needs?

“Some friends and family are great with kids, and others are great with numbers, and some are great with both. Determining who will manage your child’s funds is important—you want to be sure the funds are used in the way you would like them to be used and don’t get lost due to divorce, death, or misuse of funds.”

5. Are my retirement plan and Long-Term Care plan in good order?

“When we plan for ourselves, we are planning for our children. If we haven’t saved enough to live on through our retirement or don’t know what the best way to take social security is for ourselves, we may not be able to leave funds necessary for our child’s care, either. This can resort to using funds that we had earmarked in our head for them for our own long-term care. Planning for the unknown is essential for all parties involved.”

6. What lifestyle do I want for my child as they grow into adulthood? Will they be able to work? Have social experiences? Live on their own?

“Every child is unique in their abilities. Some families want their child to live with them for as long as possible, others want their child to have some independence with support, and some need 24-hour care with a lot of support. Many parents forget that when their child turns 22, if they are not working and the parent still is, that they need to find care for their child. Thinking through what you want their life to look like and researching early helps with this critical transition.”

7. Where will my child live as they become an adult? Where will they live as I age or if I need Long-Term Care?

“This question has become increasingly predominant in planning. There are more options today where adults can live than there were 10 years ago. With new hybrid housing models, farms communities, and other small group home models, there is more opportunity and choice. However, the availability is often limited due to upfront costs or a long waiting list. Again, research early and get on a list early.”

Answering these questions while planning for a child with special needs can change the future for you and your family. Katy clarifies that “these questions are geared to various ages during the lifetime of planning with a child with special needs. Some questions are good to know even if your child is a baby; other questions you may not know the answer to until they are closer to adulthood, but they are important things to think about nonetheless.”

Thanks for sharing, Katy! For more information on special needs planning, reach out to one of our dedicated team members or head to our Special Needs Planning page here.