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How to Financially Prepare for Your Child with Down Syndrome

More than 20 million U.S. families have at least one member with special needs, including Down syndrome. On top of concerns about their child's health, parents of children with Down syndrome are tasked with planning how to financially support their child throughout their lifetime.

Studies show that it is more difficult for families with children with special needs like Down syndrome to care for their children. Most of these families are one-income families, as one parent will often be the care provider for the child, so the loss of a job to these families is huge. That makes it especially important for parents to get financial help and to take precautions through trusts, estate planning, and wills to ensure their child's financial security.
Here's how to financially prepare for raising a child with Down syndrome:
Build a team
Consulting the right professionals will enable you to effectively plan for your child's financial future. Talk with advocates who are experts in helping you get benefits, attend seminars about financial planning, and contact a financial planner and a special needs-consultant. Get advice on how to establish a financial plan.
In addition, you should also talk to an attorney who can help you create a special-needs trust and make appropriate financial preparations in your will.
Apply for financial benefits
If your child has Down syndrome and your family is struggling financially, you may be eligible to receive In-Home Supportive Services (IHSS). These benefits can be used to meet your child’s day-to-day needs and can help offset the expenses associated with his or her condition.
It is important to understand that the application process for IHSS benefits can be long and complicated. The requirements are very strict and applicants are screened thoroughly. Even the smallest mistakes or inconsistencies can cause your claim to be delayed or even denied. For this reason, it is in your best interest to research the IHSS program and gain a deeper understanding of the application process.
Establish legal guardianship
Once your child reaches 18, he or she is considered an adult. However, your child with Down syndrome still might require a legal guardian if they will need assistance in their adult lives. Establishing legal guardianship will enable you to make financial decisions for your child that they can't make on their own. Moreover, it is also good that you decide in your will who would assume legal guardianship if you were to die unexpectantly. Consult with an attorney who will help draw up the legal documents.
Create a letter of intent
Future guardians will need special instructions on how to care for your child. It's not a legal document, but it's just as important as an estate plan. The letter should describe your child's medical history, doctors, and personal information like preferences and habits.
Get a special-needs trust
To ensure your child is eligible to receive financial benefits, you should set up a special-needs trust. A financial adviser can help establish the trust, as well as advise you on how much money should be allocated to the trust and develop a plan for how you're going to fund that money.
Work with a lawyer to include the trust in your will, so that money left to your child upon your death doesn't count as part of the child's assets. Grandparents may also want to look over their wills, since gifts willed directly to a grandchild with Down syndrome could affect their eligibility for government benefits.
Crafting a special-needs trust can be rather complicated. Your lawyer can develop a customized plan for your special-needs trust, which is hard to do on your own.
Additionally, you should create your life insurance policies so that funds paid out to your child upon your death are funneled through the special-needs trust, rather than being left directly to your child.
If this process sounds daunting and you need help, you can always reach out to us. Our advocates can lead you through everything, as well as provide resources to better assist you and your child with special needs.
Go to or call us directly at (877) 762-0702, and we will assist you in getting your child the funding he or she deserves.

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