5 Steps to Take Now for Your Child with Special Needs

raised-walkway-through-forest-1427490-mIf you are caring for a child with special needs, you know it is unlike any other journey.

Whether you are new to this journey or travelling a well-worn path, you can take charge of the things that are within your reach.

Here are some important steps you can take now to help secure your child’s future and give yourself some peace of mind.

First Things First: Develop or Amend Your Estate Plans

  • What’s the best way to provide financial protection for your child with special needs without jeopardizing his or her eligibility for government benefits?
  • What happens to your child when you die?
  • What if your child isn’t able to take care of him or herself someday?

These are just a few of the questions that may be keeping you up at night.

The Academy of Special Needs Planners recommends that parents of children with special needs have these estate planning documents prepared:

An estate planning attorney who focuses on special needs planning will ensure that these documents are prepared correctly. Otherwise they may cause unintended consequences.

Fund Your Child’s Special Needs Trust with Life Insurance

A good way to fund a third party special needs trust is with life insurance. The younger you are, the lower your premiums, so don’t delay taking this important step.


Your child may be eligible for one of the Medicaid Home and Community-Based Services (HCBS) Waivers such as Katie Beckett or the Early Childhood Autism Waiver. For more information and to discuss your situation, contact the Connecticut Department of Social Services or the Department of Developmental Services. Many factors impact eligibility for Medicaid. An attorney who specializes in Medicaid can help you plan.

Supplemental Security Income (SSI)

Your child under 18 years of age may be eligible for monthly income – $783/month in 2020 – if he or she meets Social Security’s definition of disability: “Medically determinable physical or mental impairment which results in marked and severe functional limitations.”

Because your income and assets will be considered when determining eligibility, your child may not qualify until he or she is 18. Once your child turns 18, only his or her income and assets will be used to determine eligibility and he or she should reapply.


It is critical to plan ahead if you expect to continue to be your child’s guardian after he or she reaches the age of 18 and is no longer considered a minor. You will need to petition the probate court to establish guardianship. Start working on this when your child is 16-17 years old. That way all the paperwork will be ready to file on the big day. An attorney can help you prepare the forms and schedule the hearing on your child’s actual birthday, ensuring a seamless transition.

This may seem like a lot to tackle when you are already adjusting to so many new circumstances. The Unplanned Journey offers this affirmation for families of special needs children: “The majority of families are able to find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany their child’s illness or disability.”

We hope you will be part of the majority, along with so many of our client families who invited us to support them on their journeys. Contact us today to help you plan a future for your loved one with special needs.

Related Posts:

Guardianship and Protecting Your Loved One With an Intellectual Disability
Special Needs Planning: Choose a Trustee with a Network
5 Things to Think About When Your Child With Special Needs Turns 18
What is the Difference Between a Special Needs Trust and Supplemental Needs Trust?
5 Ways to Plan for Your Child With Special Needs

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