Alexandria Nadworny, a vice president and wealth adviser at Akron, Ohio-based Sequoia Financial Group, offers insights into navigating the dynamics surrounding guardianship for a family member with a disability. In her conversation with Crain Currency, she discusses how families can take proactive steps to foster positive outcomes and create a supportive environment for everyone involved.
An issue that high-net-worth families struggle with but may not talk about is the challenges of guardianship involving a family member with an intellectual disability. How often do you see this, and what are the challenges?
Guardianship of a person with special needs can cause several issues within a family, especially if the family has a history of not seeing eye-to-eye with each other’s lifestyle choices. The guardian has a lot of control over the person under guardianship, often referred to as the ward. Guardianship is overseen by the state courts where the individual lives and is appointed by that state. If the courts witness harm to the ward for any reason, the courts may appoint a professional guardian who likely does not know the ward personally. A professional guardian can be extremely challenging to remove.
A guardian is responsible for making a variety of important decisions on behalf of the disabled person — which can include personal-care decisions such as where the person will live, what they do during the day, who will provide their care, as well as budgeting and financial management. When families disagree about who should serve as the guardian, courts can get involved if mediation does not resolve the issue. This process can also harm the person under guardianship, especially if special needs or medical conditions are not appropriately addressed during the contested guardianship.
Can you provide an example or two of situations where this occurs?
Surveys show that the rate of divorce in families with a child with special needs is much higher than the national average. Denial is often present, as are unrealistic expectations for the child with special needs, which can cause pressure on the overall family. One parent may feel that focusing on vocational skills is more important than a higher education. Even simple disagreements over what the child is eating can require a guardian ad litem and the courts to assist with the decision-making.
Siblings can also disagree on what the future looks like in terms of guardianship. Often one sibling does not have the time to commit to day-to-day responsibilities of guardianship but wants some level of involvement and for any future roles to be “fair.” It is worth noting that the guardian does not need to, and typically does not, live with the adult person under guardianship. All of this goes to show how critical it is to do planning and to revisit that planning regularly with all impacted members of the family so that everyone is on the same page for the long term.
How can families best respond in these types of occurrences?
Families should fully understand the responsibility of the guardian in the state they are living in, as guardianships vary from state to state. There are also alternatives to guardianship if the person being considered to go under guardianship has some competency. Alternatives include power of attorney, health care proxy and, in many states, supported decision-making. When possible, the person with special needs should be empowered to make their own decisions. Families can always utilize other ways to keep their loved one safe, avoid exploitation and assist with decisions.
What can be done from the start to be proactive about dealing with a family member with a disability?
Communication can never start too early. We often advise families to complete a "letter of intent," which is a helpful tool that can be used to begin a conversation on the disabled person's abilities, understanding the disability and what the day-to-day looks like [now and into the future] for the individual so all can understand what roles are needed for the person to have a full life. Often one person maintains most of the person's medical and social information, which can make it clear for the family who should serve as guardian as the person gets older.
There are other roles, such as trustee, and informal roles that are just as important — such as just being a friend. Looking to extended family, friends, teachers and neighbors should not be forgotten. Getting these people together can be quite powerful to develop a team for the loved one. No one can replace a parent, but a team can continue on in a coordinated fashion so that no balls are dropped.
Finally, family therapy and family meetings can provide a space for conversations that can be quite emotional. Getting others involved, especially professionals who have experience in managing guardianships, early and often provides much-needed support and reassurance for all and usually the best outcome for the person with special needs.