If you are a parent to a child with some type of disability, then it's never too early to start coming up with an estate plan. Having a plan of this sort in place is particularly critical in this case because it ensures some degree of continuity of care for your child should you become unable to render necessary decisions yourself.
Relatives who've had the unfortunate honor of having to hunt down paperwork after a loved one has passed are acutely aware of how helpful it is when all important paperwork is nicely organized. Having a specially-designed box, folder or computer file that is clearly labeled as containing important documents is critical to effectuating this.
It's important, though, that you tell at least one trusted source where you keep all this information in the event it needs to be located. If your files are located on the hard drive of a computer, you'll want to make sure that the individual you tell has the necessary usernames or passwords to access them.
In the case of a disabled child, within that child's own personal folder, it's particularly critical that you keep an extensive medical history, listing of medications, any known family medical history, insurance information, allergies and a list of his or her doctors and specialists. And, if your child is still enrolled in school, you might want to list details about his or her individual educational plan, teachers or counselors as well.
In working with an Erie estate planning attorney, he or she might recommend that you establish either a guardianship or conservatorship so that it's on record as to who will take care of your child if you become incapacitated. However, it's important for you to advise the person you are appointing to the role so that he or she carries out those duties should it be necessary.
At the same time, if your child is receiving Medicaid or Supplemental Security Income, it's also important to know that your child has certain restrictions imposed on him or her to restrict the amount of money he or she can receive and still remain eligible for these government benefits. As a result, it may be in your best interest to set up a special needs trust to maintain these benefits as well as a degree of continuity of care.
Source: Special Needs Alliance, "Developing an Estate Plan for Parents of Children with Disabilities: A 15-Step Approach," Laurie Hanson, accessed May 03, 2017