As a former in-home therapist of children with Autism Spectrum Disorder (ASD), I will always
cherish the many heartwarming moments with the children, the challenges we worked together
to overcome, and the families who welcomed me into their homes as though I always belonged.
One of the things I learned from these families was that having a child or grandchild with special
needs often comes with many challenges. Someone always needs to be available to care for
them. and taking some “me time” is almost always an afterthought. This is especially challenging now during the pandemic when outsourced caregiving is so limited.
And then there’s the reality that the child may not ever be able to live a fully independent life
away from home. This means that those responsible for the child’s care need to put into action a
plan for now, a plan for when they can no longer care for the child, and a plan for when they are
no longer here with them. If you are an extended family member or friend of a special needs child, you may wish to share this article with the child’s parents.
The Importance of Estate Planning for Families with Special Needs Children
Estate planning is usually not the most comfortable area of financial planning to address for
many clients. You may be thinking of the complexity, the cost, the time commitment, and the
emotions that come along with this planning. If you are someone who needs to plan for a child
with special needs, these thoughts and feelings are even stronger, but the need to plan is even
greater. The focus for you will be to establish the necessary documents to act on behalf of your
child and ensure that they can live a full, quality life when you are no longer able to help them.
You will also want to be certain that everything is in place if you become disabled. You will need
to create what is called a Life Plan.
A Life Plan helps to ensure the right people are in place to care for your child and that they have
everything they need to follow your directions. It also gives you a way to efficiently leave assets
to your child, while considering the need for government benefits if they cannot work to meet the
“substantial gainful activity” level, as defined by the Social Security Administration. In the Life
Plan you will outline the present and future personal, legal, and financial needs.
To help you get started, below is a list of categories derived from the book Planning for the
Future: Give your Child with a Disability the Gift of a Safe and Happy Life (Russell & Grant,
2010). For each of the categories we recommend listing four priorities on which you’d like to
focus. These will be your stepping-stones to help you prepare a Letter of Intent when you meet
with your CERTIFIED FINANCIAL PLANNER™ and your Special Needs Attorney to formalize
your Life Plan.
Residential: If you die or go into a nursing home, where do you want your child to live?
Education: What is your long-term perspective of your child’s capabilities?
Employment: What has your child enjoyed? List their goals, aspirations, limitations, etc.
Social/Recreational: What activities make life meaningful for your child? List sports, hobbies,
etc.
Religion: Is there a special church, synagogue, or other holy place for fellowship?
Medical Care: What has worked and what has not?
Behavioral Management: Does your child have special behavior problems? What behavior
management techniques have been effective in the past?
Advocate/Guardian: Who will look after your child, advocate for your child, and be a friend?
Trustees: Who do you trust to manage your child’s funds?
Other Areas of Concern: What other aspects of your child’s life are important to note?
To learn how Modera can help you develop a comprehensive Life Plan, please reach out to our
team of advisors. Or contact me directly at mindyc@moderawealth.com
Mindy Cleaveland, CFP®, ChSNC® is a Senior Financial Advisor with Modera Wealth Management, LLC who specializes in helping individuals and families who have planning needs centered around disability or other medical conditions. Mindy received her B.A. in Economics and Psychology from the University of Maryland, Baltimore County and is a CERTIFIED PLANNER™ professional and a Chartered Special Needs Consultant.
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