“In 2015, U.S. health care costs were $3.2 trillion. That makes health care one of the country’s largest industries, equaling to 17.8% of gross domestic product (GDP). In comparison, health care costs were $27.2 billion in 1960, just 5% of GDP.” 1
“Advocacy group Autism Speaks reports that the cost of caring for a person with autism can run an estimated $1.4 million over the course of their lifetime.” 2
Unfortunately, caregivers of special needs children and adults know all too well the financial and emotional challenges they face now, and often dread the idea of trying to plan for when they’re no longer around. But taking the time to properly plan ahead for a child’s care in the future will help to alleviate some of the stress being felt currently.
First and foremost, visit with an estate planning attorney with extensive experience in the field of special needs planning. These are experts in a complex and dynamic field, in which the rules are frequently changing. For loved ones who may be eligible for governmental assistance programs such as Medicaid or SSI, that eligibility could be lost if the child receives a lump sum from a lawsuit or inheritance( For example, 2018 Medicaid eligibility requires that an applicant own no more than $2,000 in countable assets). Therefore, if one is planning to leave a relatively large sum of money to a child who may currently be or may eventually be eligible for these types of “means-tested” benefits, it’s critical that the family speak with an attorney about creating a third party Special Needs Trust (also referred to as a Supplemental Benefits Trust). If anyone is planning on making smaller, periodic lifetime gifts to the disabled child, ask the attorney about the benefits of an ABLE account. Both of these vehicles are designed to receive assets on behalf of the beneficiary, allow those assets to be made available for supplemental needs or qualified disability expenses, and yet still allow the beneficiary to retain eligibility for certain governmental benefits. (More detailed articles to follow on both vehicles)
Next, speak with your financial advisor and/or insurance professional. If you will be creating a third party SNT during your lifetime or under your wills, it’s critical to ensure that beneficiary designations for any qualified plan (401(k), IRA, pension, annuity, insurance policy, etc) are made payable to the third party SNT and not to the disabled child outright. Failure to do so could result in disastrous consequences such as causing the child to become ineligible for valuable governmental benefit programs. For example, in the state of New Jersey, the loss of Medicaid eligibility can simultaneously result in the loss of housing and other services provided through the Division of Developmental Disabilities (DDD).
You will also want to speak to your tax advisor regarding any special needs planning you undertake. They will be able to provide necessary advice regarding the tax laws surrounding the gifting or bequeathing of various assets to a loved one. If you haven’t already done so, introduce all of your trusted advisors to one another to ensure that everyone is up to speed with the latest planning taking place. Failing to inform an advisor of a loved one’s special needs and any plans currently in place/in progress could not only unravel the plan, but cause devastating consequences like the one previously cited.
Lastly, if a third party SNT is created, it’s extremely important to consider the use of a professional trustee to manage the trust on behalf of a loved one. While many individuals’ first thought is to name a family member or friend as trustee, there are almost always significant drawbacks to that decision. SNTs are extremely complex, and the laws governing them are frequently changing. Individual family member/friend trustees almost never have the necessary time, experience, expertise, objectivity or energy to devote to the role of trustee, and they may not be able to serve when their role is called upon (death, disability, too busy, moved away). In nearly all circumstances, the use of a professional trustee is the better choice. (See previous article comparing family member trustees and professional trustees).
In this age of rising health care costs, it becomes even more critical to plan NOW for the care of loved ones with special needs. Assembling a team of professionals ahead of time will ensure peace of mind for the family, as they will know that there is a proper plan in place to care for their loved one when they are no longer able to do so.
For more information regarding Special Needs planning, and the role a professional trustee can serve in that planning, contact Sean Rice, CTFA, srice@gstrustco.com, (856)-281-1300
1 https://www.thebalance.com/causes-of-rising-healthcare-costs-4064878
2 https://blog.mint.com/planning/the-cost-of-raising-a-special-needs-child-0713
