When I first got married, my husband told me that he always had a weird feeling he would have a child with special needs because why else did he excel at working with children with special needs. He may be the one person I had met who had prepared himself long before we had children for what it would take to parent a child with special needs. Most of us are just learning as we go and struggling to find the answers we need, or we are so focused on the here and now (IEP meetings, therapy appointments, enrichment activities) that we forget about setting up a successful plan.
As a Family Law Attorney, I help families with special needs, but even I felt overwhelmed when reality hit. However, professionals of all disciplines need to understand some basics regarding unique issues that impact individuals and families with special needs. Counselors are in a unique position to assist families in this process. ‘Special Needs Planning’ is a phrase that has gained popularity in recent years for the concept of planning for your child with special needs’ future, but what does it mean and what actions are necessary.
When I first had my daughter, I felt that the “special needs’ jargon was overwhelming and confusing, and the warnings that I needed to plan paralyzed me because I did not know what to do, how to do it, and where to turn for help. Ensuring that you have a “special needs plan’ requires parents and families to look at many areas of concern for their loved ones’ future, including financial planning, estate planning, care planning, and the like.
For the overall ‘plan’ to be successful, the family should begin developing the plan as soon as they know that there will be a future need. There is also no harm in applying for future services, only to discover that they are not needed after all and withdrawing that request. It is crucial in Illinois that families apply for ‘PUNS’ funding as soon as possible. ‘PUNS’ stands for the Prioritization for Urgency of Need of Services. The ‘PUNS List’ as it is known, is an Illinois statewide database that maintains information regarding individuals with developmental disabilities who are potentially in need of services. Children, teens, and adults with developmental disabilities can enroll on the PUNS list. Depending on the program required, it can take a long time for an individual on the list to receive funding. Therefore, individuals should make requests quite early. Once the individual is in the database, the family must keep the records up to date and then can check this item off the ‘to-do’ list. Next, is making an estate plan. Estate planning for individuals with special needs is a two-step process. First, we want to make sure that any funds the individual with special needs has are distributed appropriately if he/she passes away. Second, and more critical, is an estate plan for anyone who wishes to leave any assets to the individual with special needs. To ensure that the individual is not disqualified for the coveted government benefits, the individual should not be inherited directly from anyone. One legal way to protect these benefits is to establish a Special Needs Trust to ensure that monies that will be inherited by the individual with special needs are placed into the trust and thereby protected. The assets within a properly established Special Needs Trust are safeguard-ed and not deemed to be an asset of the individual and, therefore, does not disqualify the individual for government benefits. Outside of the establishment of the Special Needs Trust, the actual Will or other estate documents must be specific to ensure that any monies do not pass to the individual directly but through a trust. Outside the financial side of the Estate Plan, the family needs to discuss the future care of the individual with special needs. While every parent must decide what will happen to their children in the event of their untimely death, parents with children with special needs have an even more significant decision. If that child with special needs is going to need care permanently, he/ she is likely going to outlive his/her parents. The obligation to provide care for the individual does not end at age 18. Therefore, not only do the parents have to have a plan of action for the individual, despite their age, but also the person(s) going to be responsible for the future care need(s) to understand the obligations and duties they agree to assume. These goals are addressed in a properly prepared Estate Plan; however, parents must be thinking about these considerations early and before an issue arises.
The Estate Plan often goes hand in hand with the financial plan, but thinking about the economic future of your child with special needs is a unique process on its own. Many parents establish a College Savings Account for their children; however, for a child with special needs, a better investment might be a Special Needs Trust, given that a child with special needs is likely going to need long term care. The child’s future may require extra financial savings, but as discussed in regards to Estate Plans, families must be careful in how they are saving for the future. The individual with special needs cannot have individual savings, or he/she risks not qualifying for government benefits, including Medic-aid and Social Security Disability.
In families that are impacted by a divorce, the considerations become even more complicated. In Illinois, statutes provide that a parent with an individual with special needs who have reached the age of 18 can seek support from the other parent for an indefinite period due to the disability. The support received can be paid into a Special Needs Trust and ideally will be paid into the trust, because the support can be deemed as income to the individual if not. The statute does not provide a set formula as with child support before age 18, but often courts look to the child support statute for guidance. These are just some of the considerations in developing a ‘Special Needs Plan’ that is necessary for the security of individuals with special needs.
If you are feeling as panicked and lost as I was, please know that there are individuals out there to help you plan for you and your family’s future. Just as during an IEP Meeting, there is a team present at the school; Special Needs Planning also requires a team made up of a group of financial professionals, attorneys, and the like to get you and your family on the right track for the future.
First published in the Illinois Counseling Association Spring CONTACT newsletter
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