“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 may end up being 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 seven 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 is that anything can happen, often 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 expensive.
Seek out parents who 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, trustees, and successor trustees for a special needs trust. As the child approaches their 18th birthday, parents may lose their access to the special needs child’s financial, legal, educational, and healthcare records and information unless they act to preserve their role.
Documents such as a power of attorney, healthcare proxy, Halachic will, and provisions for ongoing guardianship, may be needed to protect and care for the child, who is now considered an adult. The parents must take into account their situation and abilities to determine the role parents and caregivers will take, allowing for as much independence as possible.
At this point, qualifying for benefits must be taken into account, such as Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid, Medicare, food stamps, and more. Thought must be given to what could happen to public benefits if they were to take an inheritance. This could be crucial in planning for their well-being over time. A special needs attorney can help you understand how a special needs trust (SNT) and/or ABLE account can be used to pay expenses without jeopardizing eligibility for important means-tested government programs.
The hardest part is beginning the process. The barriers are many, but the rewards - peace of mind and protecting your child’s future - make it all worth it.