COVER STORY

FINANCIAL PLANNING THE ANNUAL ISSUE

ACHIEVE THE BEST RESULTS: START YOUR PLAN EARLY AND WORK STEP BY STEP

BY ALEXANDRA BAIG, MBA, CFP®

Better late than never applies just as well in financial planning as in any other field. Many of my clients come to me when their child with a disability is about to turn 18 because their child's transition team or another parent in their support group has told them that their child should apply for Supplemental Security Income (SSI) and Medicaid. But even though age 18 is an important inflection point, to be really successful, financial planning for your child with a disability must start much earlier, with the following steps at the following points

AT DIAGNOSIS you know that there is a possibility that s/he will need services in the future. Because some of those services will have asset and income eligibility criteria, the safest approach is to avoid putting assets in your child's name until s/he is closer to adulthood, and you have a sense of whether those means-tested benefits will be a necessary part of her/his financial support structure. Explain this to well-meaning friends and relatives to prevent cash gifts going directly to your child on the occasion of birthdays, holidays, religious ceremonies and similar.

SOON AFTER DIAGNOSIS it is a good idea for you, the parents, to engage in some basic estate planning. If there are grandparents or other relatives that plan to contribute financially to your child's future, they should as well. At the least, each responsible adult will want to have a will. If the family is not ready yet to create a stand-alone special needs trust for the benefit of the child with a disability, then the will of each responsible adult should contain language that would cause such a trust to be created if the death of the adult would otherwise result in the child with a disability inheriting assets directly. This kind of trust, which is triggered by the death of the grantor, is called a testamentary trust. Generally, creating a stand-alone special needs trust from

the beginning is the most secure way to create your estate plan because it is difficult to embed in a will language complex enough to set up the special needs trust to accommodate a wide range of circumstances. Please consult an estate planning attorney with experience to create your wills and trusts.

THROUGHOUT CHILDHOOD AND ADOLESCENCE, you may need to invest a considerable amount of energy to master the process for requesting and effectively gaining services within your school district. Ideally, you will still reserve a little learning energy to begin to educate yourself on the workings of the adult service delivery and funding system while your child is still a child. Even the least functional school district is required by law to provide a certain level of services as an entitlement. There is no minimum entitlement in the world of adult services. Moreover, depending on your state, there may be a plurality of methods by which one applies for and manages services as well as more than one way that these services are funded. Each avenue may have its own rules. A complex system, such as the one we have in my home state of Illinois, is difficult to understand without repeated exposure via workshops and lectures. Your local ARC is a good place to start to obtain low cost, quality education.