Planning for a Lifetime

Jeff Vistica
April 19, 2021

5 Key Considerations (and Resources) for Parents of Special Needs Children

This article was originally published on DIVERSEAbility Magazine and Exceptional Needs Today

According to the CDC, developmental disabilities affect approximately 17% of children aged 3-17 in the United States. As medical advances have continued, it's become more likely that children with special needs may outlive their parents.  According to the National Down Syndrome Society, the average life expectancy of a person with Down syndrome is 60 today.  In 1983, it was only 25. 

JAMA Pediatrics suggests the lifetime costs for caring for a person with autism to be $2.4 million.

As parents and caregivers to children with special needs, you’re faced with challenges most can’t imagine. The University of Wisconsin did a study that demonstrated mothers of a child with autism had stress hormone levels similar to soldiers in combat!

This stress emanates from ongoing worry for the health and safety of your child, guilt that you did something wrong, feeling like you need to be an expert on your child’s physical or cognitive impairment, tirelessly advocating for medical treatments, school programs and accommodations, and paying for it all. 

Here are some of the top issues you need to consider as parents of special needs children.

Emotional Well-Being for the Entire Family

Parents of children with developmental disabilities have higher rates of physical and mental health issues than parents of children without these conditions.

Are you taking time to look out for your emotional and physical well-being? Having a child with special needs places enormous stress on a marriage and other relationships.  Too often, parents ignore their own mental health issues because they are understandably overwhelmed with caring for their child. 

You can find a helpful list of support groups for parents of children with special needs here.

Financial Planning

Planning and getting started early is critical for parents of special needs children.

Understand the ongoing estimated costs to help support your child. Set up a third-party special needs trust before your child turns 18.  Inform and invite family members to participate in building financial security for your loved one. Anyone can contribute to the third-party trust and every little bit will help.

If your child is receiving Supplemental Security Income (SSI), paying for food and shelter from a special needs trust will cause a reduction in SSI benefits.  That may be a worthwhile tradeoff if it’s the only way to meet preferred housing needs.  You can pay for things like personal care, vacations or therapies not covered by Medicaid using the trust.

Estate Planning

When you set up your estate planning documents, take the time to understand how to choose a trustee and trust protectors. The job of the trustee is to act in the best interest of the beneficiaries of the trust by safeguarding the assets of the trust and ensuring those assets are used as required by the terms of the trust.

A trust protector’s job is to supervise the trustee and protect the beneficiaries from any misconduct by the trustee.  The trust protector can also perform other duties including replacing the trustee, assuming those powers are granted in the trust document.

The appointment of a trustee and a trust protector are among the most important  decisions you’ll make to start building a support system for your loved one.  A skilled attorney and advisory team can help make this difficult process less overwhelming and will be indispensable to you and your family.

Living arrangements

As your child ages, don’t wait to start looking for housing arrangements. You’ll want your loved one to be comfortable with the new living arrangements and you’ll also want to help when you are able.  It may be really difficult for your family, but imagine how much harder it would be to find housing when you’re gone. 

Letter of Intent

How will your child be cared for if you were no longer alive or able to do so?  One thing you can do is start writing down information about your child that would be helpful to a new caregiver.  Doing so is known as writing a letter of intent and it’s one of the most important documents you can prepare for your child with special needs.

The letter of intent should include an overview of your child, information about daily schedules, diet, medical care, education, benefits received, employment, social activities, religious activities, behavioral issues, and even funeral arrangements.

Once you address these issues, you may find comfort in knowing you have taken the time and effort to do your best to plan for the transition your child with special needs may ultimately confront.

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