Caring For Your Disabled Child After You’re Gone

If you’ve ever been faced with managing the details of administering a deceased loved one’s estate, you appreciate how confusing and stressful the entire process can be.  You probably never told yourself, “I wish my relatives had done less planning.” In fact, the more detailed and thoughtful an estate plan is, the clearer and easier it will be to follow the individual’s wishes after death. It’s never easy to think about a time when we’re no longer here. But, for the parent or guardian of a child with disabilities or special needs, planning ahead is especially critical. A well-considered estate plan includes far more than good financial planning. All too often, we find that parents or guardians have ensured that sufficient assets are available for loved ones but fail to consider how the assets should be managed or what type of assistance their family may need. Of course, the planning process may feel easier said than done. How do you start identifying the central issues you want to address as you look ahead to ensure the well-being of your loved ones after you are gone? Start by thinking generally about three broad subject areas:

Assets & Benefits

If your child receives some type of governmental supports, it often is vital for the services to continue uninterrupted. You should think beyond your life insurance policies and estate assets to consider the public benefits your child currently receives or may be eligible to receive in the future. When pulling together and organizing documents and your estate plan for the individuals you have chosen to benefit, make sure you have up-to-date information about every insurance policy or retirement benefit, and confirm both the primary and contingent beneficiary designations assigned to each asset. Preparing a list of informational resources for governmental benefits and a summary of your child’s current benefits information, including timelines of when he or she became eligible for assistance and the type of services received, can be extremely helpful to those handling affairs after you are gone. When it comes to monetary assets and tangible physical objects, don’t neglect to include information about any real estate deeds, mortgages, liens, investment account information, as well as bank accounts and an inventory of your valuables.


In today’s increasingly online world, access to information held digitally can be a major stumbling block. Take some time to carefully consider how your executor (under a last will and testament) or successor trustee (under a revocable trust intended to avoid probate) would be able to access details, including key points of contact, about each account, life insurance policy, and any other asset you may own. There should be a list of login information, including current usernames and passwords.  Be sure to update this list as you change those logins in the future – there are many choices that can simplify the process when it comes to password security management, including tools like LastPass, Dashlane, etc.  Storing account information in an organized way and keeping updated account numbers and current valuations in a safe place, will save precious time and frustration for those you have asked to step in and help.  It is a personal preference as to how much information and access you wish to give to personal financial information in advance of there being a need to handle your affairs.


Your child may have a specific care plan and daily routine, much of which only you may know. If you have not already done so, you should begin compiling a complete medical summary including ongoing medical, psychological and emotional needs, any medications and refill information, physicians, personal care providers, and any specialized therapy. Equally important is to provide a personal description of your child, from your perspective. How would you describe his or her unique personality? Is he shy, outgoing, cautious, or quick to laugh? Does she have a favorite keepsake, does he like to read, or share corny jokes? Are there special bedtime routines, favorite foods, activities, or games your child enjoys? The more you can share about your child and your life together, what works and what doesn’t in terms of a daily routine, the more you can ease the difficult transition your child and new caregiver will be facing after you are gone. Of course, this only scratches the surface. We appreciate the extraordinary care parents and guardians of children or adults with different abilities provide their loved ones. While no one can replace you and the special bond you share, careful and thorough planning only helps to ensure a more gentle transition and that appropriate care for your child will be available long after you’re gone. Every family’s circumstances and planning goals differ, and we work with families to help design personalized estate and long-term care plans that are uniquely tailored. Nothing takes the place of a conversation and if you’d like to learn more about the various planning options available, contact us for a personalized estate planning consultation.