Planning for the future well-being of your children is a daunting task for any parent. Add the complexity of adequately providing for the future care of a son or daughter with special needs and the process becomes exponentially more challenging.
Any special needs plan requires thoughtful dedication by the parents and often involves the utilization of multiple resources and professionals. The question for most parents is where to even start? The answer of course varies based on the child’s diagnosis, age, family situation and numerous other factors. There is however a core guide that I believe can be provided to any parent of a child with special needs to help work through the process (a process I might stress is accomplished over time).
The keys to a sound special needs plan are complicated and vary according to each situation. The list below is not meant to be a comprehensive checklist, but instead a series of nine core issues that I believe every parent must address. The actual creation of a special needs plan will take time, focus and creativity. Don’t be afraid to ask for help. Include your child’s educators, family, friends and professionals that can offer support and guidance through the process.
Step 1 — Understand the Process is Different
The initial step should be a full understanding that traditional planning advice will not work for your family. You should not engage the corner financial advisor, a general estate planning attorney or simply enlist the help of your friend’s advisors. There are professionals in the area of special needs planning and your child deserves you take every necessary step to make sure it is done right. An effectively designed special needs plan is created on the foundation of a clear understanding that the process is a complex, yet critical process. Without the appropriate plan in place a family leaves too much of their child’s future care to chance.
Step 2 — Decide on Future Guardians
If you are no longer able to care for your children who will? That should be a question that every parent fully analyzes and answers. It does now however stop with simply deciding who you would trust to raise our children if you are no longer able. Once you make the election you should do your part by fully educating the future guardians as to what they are signing on for. Make it an open and honest conversation that provides the future guardians an opportunity to really think through the responsibility. Assuming that they will accept the honor you then need to make sure that your legal work reflects the decision.
Step 3 — Understand Social Security and Other Available Supports
By recommending that you understand social security, Medicaid and other vital supports that your child may rely on I am not suggesting that you can or should become an expert. The code relating to the support of an individual with special needs could consume you for years without you fully grasping the programs. You can however develop an understanding of what the core benefits are, how your child may qualify for them and just as importantly how they can maintain these benefits. We are generally speaking about post age-18 supports, but these benefits can take various forms and even begin prior to age 18 in some instances.
Step 4 — Establish a Special Needs Trusts
If you are taking the time to read this you have likely already read somewhere else that a special needs trust is a core piece of any special needs plan. These trusts are complicated and should not be drafted by an attorney that does not dedicate a significant portion of their practice to this type of planning. SNT’s have various uses and come in many forms, but allow me to summarize them the best I can relating to their most common usage. Federal guidelines state that for an individual to qualify for social security and various other programs after the age of 18 they cannot have more than $2,000 in assets. For parents to be able to provide ongoing support and care for their child after they are no longer here the SNT is the preferable way under current law to be able to leave assets behind to their child without jeopardizing these vital benefits.
Step 5 — Adjust Your Existing Financial Plan
Every family, regardless of means, can benefit from a sound financial plan. However, for families with the responsibility of caring for a loved one with special needs your existing plan simply will not work. That is to say that your plan needs to be different than your neighbors, your relatives and likely quite different than what your existing advisor proposes. Your plan is more complex, consists of more “non-financial” issues than financial and likely means more to the future health and well-being of your child than most.
Step 6 — Manage the Age 18 Transition
I could write a book on the transition to adulthood for your child, but there are some key decisions to make as your child becomes an adult. It starts with your access to information and your ability to “help” your children make decisions ending. Two key issues come to mind for most families: financial decisions and medical decisions. This leads to the determination as to whether guardianship or some alternative is appropriate for your family. Also, age 18 is typically the age that your child is eligible for social security and other benefits based on their financial means instead of Mom & Dad’s. Couple that with the end of high school approaching and you can just imagine the commotion.
Step 7 –Take a Look into the Future
Sound impossible? There is no magic age where a decision has to be made, but eventually parents may have to make some residential decisions with their child. There is not a right age to make a change and there is certainly no single answer, but it is the parent’s responsibility to help determine what the next step is. That could mean a change while Mom & Dad are still here to manage the process or it might be making a decision for when Mom & Dad no longer are. The conversations won’t be fun and thinking about it won’t be easy, but it is our task to plan for the inevitable.
Step 8 — Develop a Continuity of Care Plan
Someday the various roles you play for your child may need to be carried on by someone else. Is it reasonable to expect another person or organization to step into that role without you adequately arming them with the necessary information? Who are your child’s physicians and which ones do you not want your child to see again? What medications or therapies should be continued and which ones should not? Are there certain schedules or rituals that should be continued? How about a listing of family, friends and relationships that should be maintained? The list seems endless, but there are tools available to help you organize this information that every family should utilize.
Step 9 — Educate Family and Loved Ones
After you’ve spent countless hours creating a care plan for your child it is time to educate your support network. This network can consist of other children, family, close friends, church & other organizations. In order for the plan to be carried out as designed it takes a cohesive network to ensure that the care you want for your child is ultimately provided.
Photo by Saucy Salad