Funding a Special Needs Trust with Life Insurance

There are probably few topics that are more distasteful than discussing insurance.  Specifically, life insurance.  If you’re like most people, it’s not that you don’t inherently understand the need and value of life insurance, you just don’t want to buy it. Thinking about buying life insurance, discussing the need for life insurance, grappling with the implications of life insurance makes the average person feel…uncomfortable.  This is why most people don’t buy life insurance. But here’s the thing, it may be one of the most important things you do as a parent of a special needs child.  It wasn’t until my son was diagnosed that I reconciled the true purpose of life insurance and its use in special needs planning.

Why do I need Life Insurance?

It’s a contingency plan, a backup plan, the old proverbial plan B.  What we all hope for is that everyone lives a full and happy life.  Along the way you do the right things like developing a budget and plan your finances. You hope to earn more, spend less, invest wisely, and pass along an inheritance for you special needs child to live off of after you pass.

Plan B is a hedge if Plan A doesn’t quite work out the way as planned.  If you or your spouse pass early you need life insurance to cover lost earnings that you would have made otherwise. Life insurance reduces the amount of resources available in Plan A in exchange for making Plan B a sufficient and sustainable outcome as well.

The Role Life Insurance Plays in a Special Needs Trust

If you are the parent of a special needs child, then you undoubtedly have heard of a Special Needs Trust (SNT).  A SNT is your most important tool to ensure your child is properly cared for after your death.  There are many benefits for a SNT.  First, they are not subject to probate in most places. Your trust lawyer can tell you if you live in an area where they do. This provides a massive benefit to your child because probate can last for years, and funds in a SNT can be available right away.

Second, and most importantly, many people with disabilities depend on government assistance programs, such as Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI).  Without a SNT in place, a payout from an insurance policy, or your estate, will likely affect your child’s eligibility for benefits.  If your child’s assets exceed $2,000, they may not receive federal or state benefits until their assets return below the $2000 threshold.

How to exactly fund a SNT is a frequent question many families have.  While you can leave assets to a SNT at any time, young families often do not have the resources to both fund a SNT and save for retirement, a house, or even college.

For families with a special needs child, life insurance has become a common answer to the question of how to fund a SNT.  A life insurance policy can provide a special needs family with the comfort of knowing that even if there are financial setbacks in the future, or one or both parents die early, or their accumulation of wealth is shortchanged, there will still be money in the future for their child.  It takes time to grow your savings, and you may not have enough time or savings to make up the deficit.

Additionally, parents don’t need to worry about spending their retirement on themselves, or on what will happen to their child if they require long-term care and drain their savings.  They are free to direct their remaining estate and assets to their other children or to leave a larger share for the special needs child and smaller shares for his or her siblings.  Once assets are set aside for a trust, they can only be used to meet the beneficiary’s supplemental needs and is not accessible to the rest of the family.

*Note: There are many ways to fund a SNT.  Since the trust is essentially a bucket that can hold different assets.  Many people choose to save and fund a trust throughout their child’s lifetime using a portfolio of mutual funds and ETFs, much like their retirement accounts. For the purpose of this blog post we will limit the discussion to life insurance.

How much Insurance do you need?

​This is a difficult question.  Coming up with a single number is tough.  The value you decide on must be tied to your child’s quality of life.  Be prepared for sticker shock.  A lifetime of financial support estimate for a special needs child will be a surprise to most people, often reaching well over a million dollars.

To be able to get an accurate prediction you need to first have a conversation with your child’s doctor to determine potential health care needs now and in the future.  Every child’s prognosis is different.  These are difficult conversations, but are critical. Some children may have a high mortality rate.  Perhaps their condition is deteriorating.  On the other hand, many children with special needs are relatively stable and go on to live long lives.   Ultimately you need to guess on your child’s probable lifespan.

​You should consider the cost of where the child will live. If your child can live independently, then there is the cost of living associated with that option. If your child may require special care attendants, a group home, or a special care medical facility, then you need to include those costs in your assessment.

Costs change over time.  Inflation degrades the value of the dollar.  Inflation, while it has averaged 3.22%, is uneven.  The costs of housing and medical care advance at a faster rate.  Expenses will probably increase over time.  Additionally, costs will change during major life transitions such as the change from Early Intervention to School Aged Services, the transition from school to adulthood, and the transition that happens when parents or care givers are no longer around when the trust is designed to do all the work.

**Note: For a good discussion on how to determine lifetime financial needs, see Hal Wright’s book.

What Kind of Life Insurance Should I Buy to Fund the SNT?

Before deciding what type of insurance to purchase, you need to think long and hard about the purpose of the policy.  You can quickly get caught up in the marketing associated with these plans.  Often you will get offered different bells and whistles called riders which will increase the cost of the policy.  It is usually best to buy insurance for the reason it exists; to insure against a loss and provide income replacement.  All the extras that are hyped by insurance salesmen, to include being used as retirement savings mechanism, almost always comes out worse than if you just invest in a properly allocated index portfolio.  Don’t buy into the hype…just buy insurance to be used as insurance.

The first type of insurance you should consider is Term Life Insurance. Term life insurance is the most simple and straight forward type of insurance.  Term provides coverage for a defined period of time, normally the time in which premiums are paid. A term policy pays a benefit should the policyholder die within the period covered under the policy. The premiums for term policies typically increase each year as the insured gets older or are level for a specified number of years, such as 10, 20, or 30 years.  Insuring later in life after your initial term will face steep increase in premiums at the end of the guaranteed term.

Term is appropriate for most people.  You should have a term policy on yourself and your spouse to account for lost wages or cost of caring for your children if your spouse where to die.  Many people choose to self insure over time.  That is, they buy as much term insurance as they need for as long as they need it until their assets appropriately accumulate to cover the difference.  Family needs will also presumably decrease over time.  Your kids will grow and leave the home, they will have attended college, and you may have even paid off your home.  As you approach retirement, you don’t need insurance because you have self-insured.

Term Life Insurance is appropriate if your child’s prognosis is poor, or his or her life expectancy will not likely exceed the end of the term.  Additionally, If you are still in debt, or do not have a cashflow strategy to fund your retirement you should only consider term insurance.  As cold as it may sound, you need to focus on yourself first before you can properly take care of your child.  If you are in good financial shape and have saved and budgeted appropriately, then you may be in a position to consider a permanent life insurance policy to fund your child’s SNT.

Unlike term insurance, a permanent life insurance policy lasts for the policyholder’s entire lifetime and provides both death benefit protection and cash value. Part of the premium paid by the policyholder goes into a cash account which accumulates over time. You may withdraw money from your whole life policy as a loan.  The policy holder is typically obligated to pay back the borrowed amount with interest.  Permanent insurance comes in many flavors like Whole Life, Universal Life, and Variable Universal Life.  The cost of a permanent policy can be cost prohibitive.  They are flat-out expensive. For a million dollars of coverage you could easily pay up to $30,000 a year.

Another issue with permanent life insurance, they often lapse.  When I was a young brand new college graduate I had my first run in with an insurance agent….and I became a statistic.  I trusted him.  He came from my alma mater after all, surely he was looking out for my best interest I thought.  I listened to his pitch, and was enamored by the idea of doing the responsible thing.  I was a real adult now, and real adults take steps to save for the future and limit risk to their families.  I could do it all at once with a shiny new permanent variable universal life policy…. never mind that the premiums where too expensive and the growth too anemic for someone in my position.

So I bought the policy and struggled with the premiums for the first few years of my post college career; and then life happened.  I had other bills to pay and emergencies to fund.  Then the dotcom bubble burst and there was limited growth on the cash value…and it became unsustainable, and I let it lapse.

I was not that different from many others.  In fact, for the policy year I purchased my VUL product the annual lapse rate in the first 5 years was 12% per year with well over 50% in the first 10 years (source).  Letting a permanent life insurance policy is so common, that more than 250,000 policies with a combined face value of more than $57 billion are lapsed and surrendered back to life carriers each year. The average face value of those policies is approximately $225,000 (source).

You can’t blame a product for making a choice to lapse, and that choice was squarely on my shoulders, but it did sour my first interaction with the world of life insurance for many years and is emblematic of the issues many others experience.  If you are going to use permanent life insurance to fund a SNT, you need to have a backbone of steel and a realistic plan to cover the premiums throughout the remainder of your life or you are just throwing good money after bad.

That is why I like the idea of Guaranteed Universal Life Insurance (GUL).  GUL is a hybrid between term insurance and permanent life insurance, and it offers its purchasers the ability to take advantage of the best features of both and can be an attractive choice for funding a SNT. ​ GUL policies are priced similarly to a term life insurance policy because it does not have the cash value accumulation and you can simply lock in the rates at your current age. The absence of a cash value means that guaranteed universal life policies can be significantly less expensive than permanent alternatives. They essentially act as term life insurance that extends until you reach age of 90, 95, 100, 105, or even 121 (or whatever age is specified in the policy).

​One knock on a GUL policy is the inevitable erosion of the death benefit over time due to inflation. Because the purchasing power of the dollar is reduced every year, in the future when you expect to need the proceeds of the policy, they will be worth less than if it was paid out today and should be taken into account when you determine how much insurance you ultimately need to purchase.  If you have done your homework, you will already have taken inflation into account on your needs projections.

Another problem with GUL policies is that they are inflexible.  If you pay less than what’s necessary, pay after the grace period, or skip a payment, these actions may affect the guarantee.  You must be disciplined to use it.

For parents of a special needs child, many financial planners recommend another type of insurance called a survivorship life insurance product for funding an SNT trust.  A survivorship or “second to die” policy is a type of joint permanent life insurance that pays out upon the death of the second parent to die, which is presumably when the child will need the money.

Survivorship life insurance is almost always cheaper than insuring the same two individuals with individual single policies. Due to the fact that the life insurance policy does not pay out until both the insured individuals die, they are less risky for the insurance company and the premium paid for the second to die policy is considerably cheaper.  Another benefit of a survivorship policy is the life insurance underwriting process is usually easier because the insurance company will usually focus on the youngest or healthiest of the two insured individuals.

The downside of a survivorship policy is that the surviving spouse does not receive any benefit from the policy, which means it should only be counted on to provide a benefit for your special needs child.  If you are concerned about maintaining a quality of life for your surviving spouse and their ability to support your child, then you should consider buying a separate policy to cover the difference in your income.  A term insurance policy would be best used by the surviving parent to support the child, and when the second parent dies, the survivorship policy would pay out for the special needs child.

A Way to Pay for the Policy

Paying for a life insurance premium for the entirety of your life can be expensive.  If one spouse dies, the financial burdens of the remaining spouse increase significantly, especially if a special needs child lives at home.  One way for a widowed spouse to continue paying the life insurance premium is to charge a “fair share” rent to their adult special needs child if they are living at home.  The child can pay for the insurance with their SSI or SSDI income.  This allows the child to stay at home, and keeps the policy in force.

Take Away

This post is by no means a compendium on insurance.  There are no easy answers here, and none of it is a panacea.  It is typically best to discuss your options with a financial planner who specializes in special needs planning and can lay out the pros and cons of each option.  Because each family is different, you will need to decide on which type of insurance is best for your situation and how much you will need to purchase to fully account for a lifetime of care.  If I can stress anything, it is to get a SNT completed as soon as possible.  Everything else can follow.

Categories: Estate Planning, Insurance

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2 replies


  1. The Journey of Special Needs Families: From Birth to Three – Finances for Special Needs Families
  2. Financial Resources For a Disabled Adult Child – Finances for Special Needs Families

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