FROM BRIAN RUBIN, ATTORNEY AND CHAIRMAN OF THE BOARD OF TSNN…

Dear Fellow Parents,

As parents of children with disabilities, or if you prefer, with special needs, we have all learned that no one, other than ourselves, is going to look out for the interests, for the future, of our child with special needs. While all parents need to make legal and financial plans for the future (who will take care of our children, who will control their inheritance until they are a more mature age, and how may federal and Illinois Estate Tax impact the planning), we, as parents of children with special needs, must begin our planning sooner and must plan for a much longer time period. We also must take into consideration many more details, laws and government regulations.

While not "special parents" as some tell us we are, we and our children do have unique needs that must be addressed... now! We cannot afford to procrastinate. We do every day, that which must be done. We "play the cards that have been dealt to us." We don't know when we may pass away due to accident or illness. We must provide for who shall care for our "special" child after our death. We all wish... no, pray, that our child with special needs will have a long, happy and enjoyable life... BUT... we wish, we pray that we live at least one day longer than our child, and that we will not have to place the "obligation" or "burden" upon others. We hope, we pray, that we will always "be there" for our child. But, as difficult as it is to think about our dying before our child with special needs, we must! We have that obligation to our child with special needs, to our other children, to our chosen guardians, and to ourselves.

We as parents of children with disabilities also have a need, a duty, to educate, to involve our "chosen" guardians for our children, now! If something happened to us, would our chosen guardians be able to step in without losing a step, without stumbling... in to the world of "special education", including MDCs, IEPs, Due Process Hearings, Transition Planning, related services, federal laws and regulations, state laws and regulations including school codes, etc.? Would they be able to step in to the world of respite services, residential placement options, special medical needs, etc.? Does this mean that they must accompany us and participate at every event? Obviously not, but you should brief them periodically as to "what is going on", "what you would like to be going on", and "where you see your child in the future". That is, they should be made aware of your "future plans". This all can be done face to face, but most of us prefer to reduce our thoughts, goals, wishes, desires, fears, concerns, aspirations, to writing, in a letter... a long letter, that you will be periodically updating {Guidelines for such a "letter" is available from my office}.

We also must remember, that while the "job" of the guardian for our "healthy" children stops at age eighteen, we are asking our chosen guardians for our "disabled" child to accept a "lifelong" job! In fact in their wills, they will be designating their successors.

Estate planning for parents such as ourselves is, as you can see, regretfully a very complex process. In order to provide for our "special needs" child's financial security, to assure that our child remains qualified or able to qualify in the future for government benefits such as S.S.I. and Medicaid, and to protect any "inheritance" from claims of the government for reimbursement for benefits provided to our child prior to our death, we must properly plan... now, and plan differently than other parents who are not in our situation. We must also consider in our plans the protection of the "inheritance" from third parties, such as siblings, grandparents, aunts, uncles and friends, even those with the best of intentions.

The facts are that in Illinois, as is the case in most states, without proper wills and trusts, our children with special needs may inherit property only to be then disqualified from receiving government benefits. Additionally, without proper planning and drafting of estate plan documents, the government may claim reimbursement from the child's inheritance for benefits provided to our child prior to our death. This result is true even with "traditional" family trusts with "spendthrift" provisions that many attorneys use for all parents. One of the primary objectives in estate planning for parents of a child with special needs is to assure that the child remains qualified and eligible for government entitlement programs, while protecting the family's assets, and the child's inheritance, from seizure by the government as "reimbursement."

The reality of our situation is.. the bad news is... that the Illinois Appellate Court in 1982 held that interests of our children, even if maintained in a traditional family "spendthrift" trust created or established in our wills or in living/revocable trusts, are to be considered assets, resources of our child and the State of Illinois would be entitled to recover all of the money it may have provided for food, clothing, residential care, medical care, etc. of our child from the trust fund, from the inheritance left for our child with special needs.

In the "dark ages" of planning for individuals with disabilities, it was often recommended by attorneys unfamiliar with (or worse, with some knowledge of) the area, to either disinherit the child (leaving the child dependent upon government programs, if any, and regardless of how inadequate or insufficient the government programs may be) and/or to leave that child's inheritance to the other children, other relatives, or friends. The intention would be that these people would be "morally obligated" to use those funds to supplement government benefits received, if any, by or for the benefit of the child with special needs. That advice is outdated. It is, in most cases, dangerous... bad advice.

First, as parents we have had to deal with government rules, regulations, and personnel, all of our child's life. We are not ready to abandon our child and rely upon the government to provide the level of care that we would desire or provide if we were alive. Second, if we rely upon the "moral obligation" concept, we have no assurance that the funds will be used for our child's benefit. There is no legal obligation to use the funds for the child. If there was such a legal obligation, the government could reach the funds, and disqualify our child from S.S.I. and Medicaid benefits. Third, with the "moral obligation" method, the funds are the exclusive property of the recipient, and can be reached by the recipient's creditors. Fourth, the recipient may have their own financial needs (such as their own children's college education) and "dip" into our child's inheritance, with the best of intentions to repay the amounts, though never in a position to do so. Fifth, if our trusted recipient places these funds in a joint account with their spouse, our child's inheritance may then be considered marital property. In a recipient's divorce, our child's money could be distributed to an ex-spouse of the recipient (with no such desire or inclination to honor "moral obligations"). Lastly, if the recipient passed away, who would receive the "moral obligation" inheritance, and would they have the same commitment to our child?

The good news is that since 1982, Illinois Appellate and Supreme Court case decisions have provided us a viable alternative. A special form of a Trust, a "Supplemental Discretionary Needs Trust," has become the appropriate and preferred estate planning document for parents such as ourselves.

The Courts in Illinois have told us that if the Trust language is clear that the parents' intention, their express purpose in establishing the Trust, was to provide a source of funds to be available only to the extent that the government was unwilling or unable to so provide such funds; to provide funds only as a supplement to government funds, not in li