Asked and Answered

Asked and Answered

Caring for a special needs child is a life-long, ever-changing challenge that does not end with the death of the parent.  

Parents should consider the impact of their Life & Estate Planning on the long-term financial needs of their special needs child and on any other children they may have. What steps should you take?  What are the options?

Just like any other large project, small, methodical steps in the Life & Estate Planning process will get you to the end faster than frantically trying to do it all at once.  Realize that you are creating a Life & Estate Plan, not just for you (and your spouse/partner/co-parent), but for your child as well.  These plans need to cover your anticipated needs for today, retirement, disability or incapacity, and eventual death.  The plan should also provide and protect your special needs child during your lifetime and after your death.  

Once established, regular maintenance will help assure you that the plan remains relevant to changing circumstances.  For example, today’s minor child is tomorrow’s adult. For all children, the 18th birthday is a good time to review your Life & Estate Plan and to consider the necessity of a Living Will or Durable Power of Attorney for Health Care, along with a general HIPAA Release.  For the special needs child, this may be especially important. Depending on the child’s needs you may consider obtaining a guardianship in order to continue assisting your child mange their care.  

Creating and managing this plan is a three phase process:  Phase I, Gathering and Documenting the Status Quo; Phase II, Evaluating and Protecting Current and Future Needs; Phase III, Maintenance.

Phase I in Five Steps

  • Gather your most important and pertinent legal documents and information.  Everyone has a file (or three!) of “important” papers.  These include deeds to property, titles to vehicles, mortgages, stocks, insurance declarations, military service records, a list of bank, investment and retirement accounts, along with any necessary access credentials such as usernames and passwords.  Choose an organizational system that works for you.  You want to keep the records organized, secure but accessible, and easily maintained.  You will want to make sure that key people in your plan will have access to this information.

  • Create a master medical file.  Start with emergency contacts and key healthcare providers.  Include health insurance information for you (and your spouse/partner) and your special needs child.  If multiple policies are involved, consider writing a short summary of how they work together.  Which policy is primary, etc.  Include a file with health histories for each of you, and include current treatment plans.  This is a good place to include information regarding any pre-paid funeral or burial plans for any of you.

  • Financial Snapshot.  Create a brief description of the assets of your estate, their value, how they are titled and how they will pass after your death.  Include a list of debts, if any.  If your child has any assets in his or her name, create a separate “snapshot” for them.

  • Digital Assets.  Along with the financial snapshot, make a list of all your digital assets.  This includes any online banking or investing accounts, social media, photo storage and sharing, books, music, email and websites owned.  For each digital asset, include all information needed to access the account, such as passwords, usernames, and answers to security questions.  If it is an asset that generates income, be sure to prepare a summary of how that works and when it needs to be renewed.  Check your user agreements for terms affecting the use and ownership of your account if you become disable, incapacitated or die.  Back up any information that you want to safeguard.

  • Life and Estate Planning documents.  Gather copies of any Wills, Trusts, and Power of Attorney documents you have for any of you.  Be sure to store originals in separate safe place.  Review your current plan with the assistance of a Life & Estate Planning attorney with knowledge regarding the issues affecting special needs children.  Your plan may need updating to make sure your power of attorney documents are “fresh” and contain current language.  Provisions for your special needs child may need to be clarified to make sure any inheritance can be used for their benefit, but not disqualify them from other necessary services.  As mentioned above, you may need to have your child execute a HIPAA Release and grant you authority under a Durable Power of Attorney for Health Care, or you may need to seek a guardianship for your child.


Take this list and set small goals and deadlines for yourself to accomplish the steps in Phase I.  When you are ready, take a look at Phase II.

Copyright © 2016 Kirsten Schroeder Larsen, P.A.  All rights reserved.