The National Academy of Elder Law Attorneys (NAELA) has designated October as “National Special Needs Law Month.” Special Needs Law attorneys throughout the country contribute a great deal to their communities by educating those with special needs, their families, and caregivers about their legal needs.
While awareness of special needs concerns is at an all-time high, many parents are still in the dark as to how to make sure their child is physically and financially cared for if and when death or incapacity occurs.
As much as parents of special needs children hate to think about it, there will come a time when they are physically unable—or perhaps no longer alive—to oversee their child’s care. That’s why long-term care plans must be put in place as soon as a diagnosis is made to ensure the child always stays physically and financially protected if the unthinkable occurs.
The options for long-term care planning are broad and depend on the needs of each child. But parents can simplify the process by starting with these 3 key planning steps:
1. Name Guardians - Parents should immediately name guardians who can oversee their child’s care if something unexpectedly happens to them. Often times this designation is included in a parents’ will, but that will not cover a situation before the parents’ death, but when they are incapacitated. So an additional document should be executed designating guardians if the parents are living, but unable to care for their children. Without such designations in place, the child could end up in a lengthy custody battle—or worse—be placed in foster care if the unthinkable happens. Parents should focus on finding someone whose love and dedication to the child closely resembles their own. Finally, parents should give copies of their designations to the guardians themselves, as well as the child’s school, babysitters and even the neighbors so everyone knows exactly who to call if a crisis strikes.
2. Set up a Special Needs Trust - A special needs trust is a legal tool that ensures a disabled child’s health care and living needs are taken care of if something happens to mom or dad. While many parents have good intentions of leaving their child life insurance benefits or other assets in a will if they pass, leaving a child an inheritance outright could void their eligibility for the need-based disability insurance programs or Medicaid in the future (which is often the only health care option available!). Instead, a trust helps to ensure that the child receives such financial benefits without actually having assets in their name—thus leaving all government benefits intact.
3. Build a Team of Support - It’s never too early to begin building a team of trusted caregivers and advisors who can immediately step in and help the special needs child if a crisis occurs. Such team members may include the child’s legal guardians, a trusted doctor, financial advisor, estate planning attorney and dedicated family or friends. Building such a team now also helps to ensure you have the right people in place, as opposed to someone who will prey upon your child’s disability in an emergency. In addition, I recommend compiling a binder of information that will ultimately help this team, particularly the trustee and guardian, understand the needs, desires and objectives of the special needs child. It is important that this binder be compiled throughout the life of the special needs child and be regularly updated and supplemented.
Parents of special needs children must go into planning with the mindset that their child will require a lifetime of care. Fortunately, by starting with these 3 key steps, parents will make tremendous progress in ensuring their child is physically and financially cared for in their absence.