Parents of a developmentally-disabled or otherwise incapacitated child bear a life-long burden of care.  In fact, after their child turns 18, it gets harder.  As an adult, the child is not permitted to continue participating in many programs that were available during school-age years. And adults with special needs encounter many challenges not faced as children.  So, what happens to the child after parents have passed away, or, due to their own incapacity, cease providing essential care and supervision?  Are there other persons who are both willing and able to step up and assume what could become for them, as well, a life-long burden?  Will the child have enough money to pay for his or her unique and often challenging medical, housing, social and vocational needs?

Stanley Vasiliadis, an attorney with the Lehigh Valley law firm Vasiliadis Pappas Associates LLC, and a member of the Academy of Special Needs Planners, recently discussed this topic in an interview with LifeStyles Over 50.  Unfortunately, noted Vasiliadis, “the most common solution is to saddle this responsibility on an often less than enthusiastic and frequently unprepared sibling.” Even when successful, this takes an unnecessarily severe toll upon the care provider and his or her family. “That’s not to say” observed Vasiliadis, “that a sibling or other family member shouldn’t play an active role.  On the contrary, family members are uniquely qualified to provide important guidance to a trustee, guardian or other professional who does possess the needed expertise.”

Here are some important estate planning measures every parent of a special- needs child should consider:

Supplemental Needs Trust.  A Supplemental Needs Trust, or “SNT” is essential.  Assets held by a SNT are not considered “available resources” to the incapacitated beneficiary for purposes of public benefits eligibility.  Accordingly, the beneficiary can draw upon the trust fund for supplemental needs not provided by public benefit programs while retaining eligibility for those needs-based programs, such as Medicaid and Supplemental Security Income (SSI).  Any other trust would need to be totally exhausted before a beneficiary could re-qualify for those benefits.  A SNT should be administered by a corporate trustee sophisticated and experienced in caring for special needs beneficiaries. A responsible and caring sibling or other family member should be named in the SNT as a “trust protector” to monitor and guide the trustee and replace the trustee, if appropriate. A SNT can be incorporated as part of a parent’s Will or be set up as an inter vivos (created while alive) trust. Each of these options is discussed below.

“Stand-By” Irrevocable Inter Vivos Supplemental Needs Trust.  For many, an irrevocable trust, nominally funded with $10 or $20, is the best means by which to implement a SNT. Unlike a Will, which does not take effect until after parents have died, an inter vivos SNT exists and ensures continued care for the child if the parents, due to the infirmities of old age or chronic incapacity, no longer can.  Unless and until both parents die or become incapacitated, they serve as trustee but really have no duties as trustee since the trust is unfunded or, as is sometimes described, a “stand-by” trust.  So, parents, if they wish, and most do, remain fully involved as caregivers, just as before until they are no longer able to, and continue to provide for their incapacitated child out of their own funds. A corporate entity named in the trust as successor trustee steps in and provides care for their child only after the parents no longer can.  Other concerned family members, very often siblings of the special needs child, can maintain a supervisory role over the trustee as trust protector, thereby alleviating them from all of the burdens of serving as trustee.

Last Will & Testament.  Even parents with an irrevocable inter vivos supplemental needs trust (SNT) will still need a Will.  This ensures that when parents pass away, the inheritance set aside for the incapacitated child is distributed to the SNT. For those without an inter vivos SNT, the Will must provide for distribution of the incapacitated child’s inheritance into a “Testamentary” SNT, that is, a SNT included as part of the parent’s Will. As in the case of an inter vivos SNT, the testamentary SNT names a third-party, typically a corporate entity, as trustee. The testamentary SNT does not actually come into existence and get funded until both parents have passed away and the estate of the second-to-die spouse is distributed. One advantage of using an inter vivos SNT rather than including the SNT as part of one’s Will is that the inter vivos SNT can be funded and begin benefiting the incapacitated child while one or both parents are still alive. This will become necessary if a living parent cannot continue caring for the child. Another advantage of using an inter vivos SNT instead of a testamentary SNT is that the inter vivos SNT can be funded by other persons, perhaps grandparents, while the parents are still alive.

Power of Attorney and Health Care Directive. Many fail to realize that not even a spouse, adult child, or parent of an adult child has legal authority to step in and handle the family member’s financial affairs absent a written legally-compliant power of attorney. Similarly, as regards health care, immediate family members have only limited medical decision-making authority.  Most people today recognize the need for these legal tools, same as with Wills.  A special needs child, promptly upon attaining age 18, should appoint parents or other family caregiver as power of attorney over the child’s financial and health care affairs. The young adult special needs child, unless so severely cognitively impaired as to lack requisite mental capacity, can legally execute these powers of attorney.    

Financing Options.  Parents of special needs children should incorporate into their retirement and estate planning financial measures to fund their child’s SNT.  This might include second-to-die life insurance that pays out to the SNT after both parents have passed away.  Also, very importantly, the second-to-die parent must designate the SNT as primary beneficiary of life insurance, qualified retirement plans such as IRA or 401(k), and deferred annuities if parents want these assets to be available for their special needs child.  Distribution of these “non-probate” assets pass in accordance with their beneficiary designation, not in accordance with the terms of one’s Last Will & Testament. Finally, a special needs child and concerned family can establish an ABLE account as an additional funding source for the child both during a parent’s lifetime and after parents have died. For more information on ABLE accounts go to


As you can see from the forgoing discussion, prudent parents of a special needs child must consider and implement a variety of unique estate planning measures. The lawyers at Vasiliadis Pappas Associates have expertise and experience assisting families of special needs persons. Call us. We can help.