Big changes to family dynamics can be hard to navigate. Having a loved one with intellectual disabilities as part of the mix may make it even trickier. But planning ahead, ideally with the support of a trusted advisor skilled in special-needs planning, can help mitigate some of the turbulence.
One of the biggest challenges for families in which a loved one isn’t able to care for himself is determining a guardian. That becomes particularly critical as the parents of the child with special needs age or divorce, says Alexandria Nadworny, a vice president at Sequoia Financial Group. Sequoia, which is based in Akron, Ohio, but has a national presence, has a team of advisors dedicated to working with families that have children with special needs.
Guardianships are usually straightforward, but in some rare cases, such an arrangement may be challenged by other family members—typically, but not only, a divorced parent. The risk of such an outcome is too great to leave to chance, Nadworny says. Even if there’s never a challenge, planning in advance for life after mom and dad is critical.
“It’s not common, but when it does happen, it can cause a significant amount of damage to the person that’s under guardianship as well as to the overall family,” she says. “Also, families that have loved ones with special needs do have a higher divorce rate, which is typically when we see more contested guardianships.”
That may be especially true for families with wealth or higher profiles, who may be more at risk from strangers or unhappy family members seeking to manipulate a guardianship situation for their own benefit, Nadworny says.
Contested guardianships—think of Britney Spears as one extreme example—can take a toll in terms of money, time, and emotional distress.
Believing that communication is the most important component of making plans for succession, Sequoia convenes family conversations as soon as the younger generation feels ready, but certainly while the parents are still alive and able. The goal is to avoid starting the discussions during a crisis, she says.
The first step is drafting what Sequoia calls a “letter of intent,” laying out what the disabled family member is able to do, what he or she struggles with, his or her likes and dislikes, and so on. If siblings are going to be involved in the guardianship in the future, the letter of intent can be an important blueprint, particularly if parents have previously kept caregiving tasks to themselves, Nadworny says.
The planning process should also include decisions about how the estate plan and financial assets are to be distributed or utilized. Wealthy families also need to consider which of their assets could be at risk in case of a contested guardianship, and the cognitive ability of the person under guardianship, as well as what protections are in place for that family member.
Though wealthy families may have more latitude to pay caregivers for day-to-day support, someone still needs to serve as the official guardian of the special-needs family member. That person will report annually to a state court system and will present a care plan each year as part of that process. There are professionals that can serve as guardians if needed, but usually such experts, as well as the courts overseeing the case, would also like to have a family member that knows and loves the person to partner with them, Nadworny says.
In a worst-case scenario, such as a divorce by the parents before the siblings are old enough to serve as guardian, the court may appoint a guardian to speak on behalf of the person with special needs.
Even families with significant wealth may want to have their child with special needs remain eligible for government benefits so they have access to publicly funded resources and other programs that only government agencies provide. As one example, many intellectually disabled children may qualify to attend private schools funded by the public school system. When the child comes of age, federal entitlements such as Medicaid may become available, and state-level case management resources may be assigned.
“They say it takes a village to raise a child,” Nadworny says. “It often takes a region to provide for a great life for a person with special needs.”
This Barron’s article was legally licensed by AdvisorStream.
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