If you’re caring for a loved one with special needs or disabilities and you’re not sure where to turn, what to do, or how to do it, you’ve come to the right place. Here’s a checklist to help you become as organized and buttoned up as possible. By no means is this an exhaustive list. Consider it a starting point, outlining important aspects of planning for your loved one with special needs.

Letter of Intent

Although not legally binding, a Letter of Intent allows you to tell your loved one’s story. It’s an instruction manual for the future caregiver who will take care of them when you’re no longer able to. Think through a typical day. What specific steps do you follow to ensure they’re happy and comfortable? A new caregiver may not be aware of these simple steps, which could cause unnecessary discomfort to your loved one. Maybe they like to be tucked into their bed a certain way or prefer a specific shape of macaroni and cheese. What makes them happy? What makes them sad? What are their key interests and hobbies? Put everything in the Letter of Intent that you feel is important for someone to know about your loved one, should they be caring for them at some point in the future.


Who will watch over your child with special needs when you’re gone? If you’d prefer to make that decision rather than a judge in a court of law, putting guardianship in place is vital. Consider a meeting with your selected family member/friend to ensure they agree to be your child’s guardian, since it is a significant responsibility.

Estate Planning

Creating all necessary estate documents will ensure your assets pass efficiently to your child with special needs. If they were to inherit a significant level of wealth outright, this could have devastating consequences if they’re currently receiving government benefits like Supplemental Security Income (SSI) or Medicaid. Consider creating documents such as wills, trusts, special needs trusts, powers of attorney for healthcare, property, and financial decisions, and a living will. Review your estate plan at least every five years. Make any adjustments as necessary via document amendments.

There are three types of special needs trusts: a first party (or self-settled), a third party, and a pooled special needs trust. Confirm which option makes the most sense for your situation. Bear in mind, multiple types can be necessary in certain situations.

Beneficiary Review / Asset Titling

Once you have your estate plan, you then must implement and fund it. Retitling your home and various assets based on your attorney’s recommendations is key. Review beneficiary listings on all accounts including work plans and retirement accounts, bank accounts, investment accounts, and more. Update them as necessary ongoing.

Government Benefits

Familiarize yourself with all available government benefits such as Supplemental Security Income (SSI), Social Security Disability Income (SSDI), Medicare, and Medicaid, all with unique requirements for eligibility. Having a solid understanding of these standards can be invaluable once you begin applying for such benefits.

Funding Your Loved One’s Remaining Lifetime

If you were to pass away today, are there enough assets to adequately fund the remainder of your loved one’s lifetime? This would be made up of a combination of your own assets you’ve saved and built over time, plus any life insurance proceeds that would go to their benefit. Understanding what this lifetime financial need may look like can be a daunting task. A financial advisor who has training and expertise in this specific area can help you calculate these potential lifetime costs.

Take a Step Back

Most importantly, take a step back, realize that Rome wasn’t built in a day, and go at it one step at a time. Before you know it, you will have made real progress. It’s understandable to be overwhelmed by everything that needs to be done when your day-to-day already consists of a full-time job, doctor appointments, and various therapies. Realizing that you do not need to go it alone can be therapeutic in and of itself. Find a financial advisor who is well-qualified in special needs financial planning. Talk with them about your questions and concerns. Put together a plan for your loved one’s lifetime of needs, and for your own. By doing so, you may find a sense of peace and calm amidst the chaos and frenzy.

Author Jeremy S. Joseph Financial Advisor

Jeremy has been involved in the financial services industry since 2006. He earned a bachelor of arts degree in communication studies from the University of Kansas.

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