As advances in medicine are made, life expectancy in the United States, according to the Center of Disease Control (CDC), is currently at 78.7 years. That number represents a population of the nation considered “able” and somewhat healthy, but what about an individual with a disability?
The Americans With Disabilities Act (ADA) defines a person with a disability as an individual with a physical or mental impairment that substantially limits one or more major life activity, has a record of such impairment, and is regarded as having such impairment. Should you have a child who is classified as “disabled,” what can you as a responsible parent, guardian and caregiver do to chart a course in their life and ensure they are taken care of should a crisis arise?
Reality dictates that being around forever to care for a disabled individual is simply not feasible. Depending on the severity of the disability, the individual may very well outlive their caregiver; therefore, a contingency plan must be in place to ease the financial burden of such a situation.
These five tips will help keep you ahead of the curve when caring for an individual with disabilities.
1. Make sure you have a will in place
The most common reason people create a will is to determine who receives one’s property at the time of their death. In the case of caring for a disabled individual, you must include appropriate Guardianship and Supplemental/Special Needs Trust provisions. The primary purpose of a Supplemental/Special Needs Trust (SNT) is to preserve government benefits for disabled beneficiaries and maximize/preserve the use of private/personal funds.
2. Choosing the correct trustees and guardians is critical
Once a disabled child turns 18, their parents can no longer legally make decisions on their behalf. At this age, the child is deemed “legally competent,” and now has the ability to make their own decisions, both regarding their health and finances.
Prior to a child with disabilities turning 18, a caregiver or guardian should consider an Article 17-A Guardianship, available to those classified as “intellectually disabled or developmentally disabled” in New York State.
If a disabled child is not competent to sign a Durable Power of Attorney and Medical Proxy, an Article 17-A Proceeding will have to be commenced in Surrogate’s Court to have a legal Guardian appointed for the personal needs and/or financial needs of the now-adult disabled person.
3. Purchasing a life insurance premium to support a disabled beneficiary
It is advisable to purchase a separate life insurance policy to fund an SNT when the parent/caretaker dies, so that the disabled beneficiary’s care is not compromised. This will lessen any burden on whoever becomes guardian of the disabled individual.
4. Legal documents naming a sufficient successor guardian/trustee younger than the current guardian
As a precautionary measure, the parents of a disabled child should always have a qualified guardian/trustee in place—younger in age than the parents themselves—in the event a crisis or death occurs. Again, back to the reality we must all face that death is inevitable, we must have all bases covered in the event a catastrophic event was to occur and your disabled child was left without a guardian/trustee to tend to their needs.
5. Legal documents naming a sufficient successor guardian/trustee younger than the current guardian
There is no substitute for you as a parent. In estate planning, a guardian is someone who assumes the role of a parent in the eyes of the law, assuming all parental duties. A trustee is in charge of managing the financial needs of the child. While both play key roles in the event of a tragedy, the guardian will provide daily care and support for the child. The role of the trustee is key as well as they must be able to manage and allocate the funds left behind to care for the disabled child.
Sometimes, the same individual is chosen as both the guardian and trustee, while in other instances, separate individuals have each role. One may be stronger in care and nurturing, while another may be more fiscally responsible. Regardless of the role, one must ensure that they are making the right decision in choosing to fill these roles as both will play key roles in the life of the disabled child moving forward.
It is prudent to draw up legal documents to determine who will assume the roles of guardian, trustee or both in your estate plan. While your physical property and legacy may be left behind and have a value, you cannot place a dollar amount on the care of your child, and choosing guardianship and/or a trustee is key to that end.
Whether your child is classified as disabled or has the ability to live life with zero restrictions, proper estate planning will keep you ahead of the curve in the event tragedy strikes.