4 Steps to Protecting a Child with Disabilities

Raising a child is expensive and can cost about a quarter of a million dollars, excluding college. For a child with special needs, that cost can more than double. If you’re the parent of a child with special needs, it’s vital to ensure your child will continue to be provided for after you’re gone. It can be difficult to contemplate, but with patience, love, and perseverance, a long-term strategy may be attainable.

Even though the financial costs may be a major factor in your caring and planning for a child with special needs, finances can seem like a small part or afterthought when it comes to also dealing with the emotional needs, physical needs, caregiver needs, and more that go along with making sure you, your family and your dependent are cared for in the best manner.

Let’s take a look at 4 important steps to protecting a child with disabilities:

Envisioning a Life After You

Just as every child with special needs is unique, so too are the challenges families face when preparing for the long term.

Think about the potential needs of your child.

Will they require daily custodial care? Ongoing medical treatments? Will your child live alone or in a group home? Can family members assume some of the care? Answers to these and other questions can help form the vision of what may need to be done to plan for your child’s care.

Preparing Your Estate

Without proper preparation, your child’s lifetime needs can quickly outstrip your funds. One resource is government benefits, such as Supplemental Security Income (SSI) and Medicaid, which your child may qualify for depending on their situation. Because such government programs have low-asset thresholds for qualification, you may want to consider whether making property transfers to your child with special needs will impact their eligibility. Determine if a special needs trust (SNT) makes sense for your situation and how the trust could inherit your estate instead of your child.

Using a trust involves a complex set of tax rules and regulations. Before moving forward with a trust, consider working with a professional who is familiar with the rules and regulations.

You should also make sure you have an up-to-date will that reflects your wishes.

Involve the Family

All family members who have a role in caring for a child with special needs should be involved in the decision-making process. But, many other friends, family members, and professionals can be a part of your team.

A support system can be a gamechanger when caring for a child with special needs. It not only helps the caregiver with meeting needs, but can also help bring peace knowing that there are other people who will help care for your child when you are no longer able.

If at all possible, it’s best to have a unified front of surviving family members to care for your child after you’ve passed on.

Identify a Caregiver

In order for a caregiver to make financial and health care decisions after your child reaches adulthood, the caregiver must be appointed as a guardian. This can take time, so start setting this in motion as soon as you are able.

To do this, you can write a “Letter of Intent” to the caregiver and family to express your wishes along with information about your child’s care. This isn’t a legal document, but it may help communicate your desires. Store this letter in a safe place, alongside your will. To learn more about this, visit our blog. “Creating a Life Plan for Your Child with Special Needs.”

Outlining an approach for a child with special needs can be complicated, but you don’t have to do it alone. Working with loved ones and qualified professionals can help you navigate the various facets of this challenge. If we can help, please don’t hesitate to reach out.

The love and care you have for a child with special needs will be expressed in many ways. Some will be in meeting their day-to-day needs and helping them live their life to the fullest, and some may be behind the scenes, such as making sure your financial and estate plans are in place. If you are a caregiver, you’re doing great! Keep going and don’t hesitate to ask for help when you need it.

Visit https://searcyfinancial.com/blog-posts/89-special-needs for more articles on special needs financial planning.


1. Investopedia.com, January 9, 2022

2. AmericanAdvocacyGroup.com, May 3, 2022

Please remember that different types of investments involve varying degrees of risk, and there can be no assurance that the future performance of any specific investment, investment strategy, or product made reference to directly or indirectly in this content, will be profitable, equal any corresponding indicated historical performance level(s), or be suitable for you or your portfolio. Due to various factors, including changing market conditions, the content may no longer be reflective of current opinions or positions. Moreover, you should not assume that any discussion or information contained in this newsletter (article) serves as the receipt of, or as a substitute for, personalized investment advice from Searcy Financial Services, Inc.

The content of this letter does not constitute a tax or legal opinion. Always consult with a competent professional service provider for advice on tax or legal matters specific to your situation. To the extent that a reader has any questions regarding the applicability of any specific issue discussed in this content, he/she is encouraged to consult with the professional advisor of his/her choosing.  

Published for the blog on March 30, 2023 by Searcy Financial Services, your Overland Park, Kansas Fee-Only Financial Planner and Investment Manager.