By Monet Binder, Esq. “Someone who is not dealing with a special needs child or children, can’t appreciate the lows and the highs – the difficulties and the beautiful moments – that we go through every day, week, month and year.”  This is what I have heard from my clients and it is clear that their experiences are the very reason that a 2018 study by Professor Meghan Burke at the University of Illinois, found that ”fewer than half of parents of children with intellectual and developmental disabilities make long-term plans about who will take over their child’s care if the parent or other relative providing care dies or becomes incapacitated.”             When it’s a struggle each day to keep up with the demands of care, it is understandable that the emotional and stressful discussions of planning for future care could be put off indefinitely.  The reality is, though, with advances in healthcare technology and treatments, individuals with disabilities are finding themselves outliving their parents, who are most often the primary caregivers. According to the University of Illinois website discussing the study, “Some parents indicated that their planning efforts were thwarted by interpersonal conflicts – such as disagreements with the other parent about what should happen – or by family members’ refusal to discuss alternative arrangements. According to more than 7 percent of the parents in the survey, the topic was too ‘emotionally loaded’ or stressful for family members to talk about.” There’s Plenty Of Time To Plan For The Future             While I find the general attitude is a feeling that there is plenty of time for planning – we all know the truth that anything can happen, when we least expect it.  It is crucial to be prepared for the unexpected. Then, we can have peace of mind and be b’simcha when “it” doesn’t happen. “How Do I Get The Information I Need?” More than 39 percent of those, in the University of Illinois survey, said their greatest impediment was simply obtaining information on developing a care plan for their child with disabilities.  The information is available, but unfortunately, it can be overwhelming, and it is often not packaged in easy to understand language. So, to get going on planning, you need to find a place where you can pull the information together. Beginning The Process It’s important to begin the planning process as early as possible. Depending on the child’s needs, planning to ensure their long-term quality of life, can be complicated and there are expenses involved. Seek out parents that have done special needs planning, understand that steps they have taken and why they took them.  Also, search for presentations, which can give you the information you need and the opportunity to ask questions – either at the presentation or in a follow up meeting. Most importantly, consult a special needs attorney, who can provide you with an understanding of what you need in your particular situation, since it will be unique and must be approached that way. Before a special needs child’s 18th birthday, there are many questions that a special needs attorney can help the family think about, including guardianship, caregiving after parents are unable and the possibility of getting the help of siblings, and trustees and successor trustees for a Special Needs Trust. […]

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