Who will care for special-needs loved one when you’re unable? Consider these factors

“Who will provide care for an individual with special needs when I’m no longer able?”

This is a major concern of many caregivers.

Planning for the continuation of an individual’s care is often difficult and overwhelming. So much time is focused on current concerns that the future is often not a top priority. Completing Guardianship Succession Planning early can avoid a crisis for the whole family.

For those individuals acting as a guardian, creating a succession plan concerning who will become the primary guardian(s) in the event of your death or incapacity is the first step and can be a challenging task.

This successor guardian will take on all the responsibilities of the current guardian, be an advocate for the individual with special needs and provide the highest possible quality of life.

This long-term commitment will significantly impact their family’s future.

It is important to have a frank discussion with a potential guardian about roles and responsibilities. The individual with special needs should be part of this discussion about their own future if possible.

Any potential guardian should be willing and capable to assume legal authority to make educational, financial and healthcare decisions. Creating a letter of intent can provide medical information, likes and dislikes, friends, activities and a detailed framework for this guardian discussion.

Having co-guardians may be a workable solution when an aging parent is acting as guardian. This will allow the guardians to work together and provide a smooth future transition. In any case, all guardians must be approved by the court.

In many cases, a sibling will become the future guardian. Having a sibling with special needs has already impacted his or her life in many ways. It is likely a sibling will outlive her parents and she will be more involved with care-giving.

Prior to assuming the responsibility, the sibling guardian may need to consider where to go to college, where to live, how will time be spent with her own family, whether she will be able to work full time and how she will fund her own retirement.

It is common for the sibling to become divorced due to the stress put on a marriage when an adult brother or sister requires significant care.

Grandparents may also become guardians for a grandchild with special needs. While they may be loving and devoted to their grandchild, this can be a demanding situation if a grandparent has health problems or becomes cognitively impaired.

In a situation where family members are willing to work together, they can split roles and responsibilities. Taking a team approach can reduce stress and maintain balance in their own life. Finding support groups in the community can also be a great benefit.

Successor guardians may also be organizations that provide these services. This may be an ideal situation if family members are not available or preferred. It is important to provide them the same information in a letter of intent.

Making personal and financial decisions for someone else is an enormous responsibility. Having the knowledge and skills to manage governmental benefits, make investment decisions, pay taxes, manage trusts and organize living conditions takes time and commitment. An estate may hold real estate or other assets that require greater skill to manage.

In many cases, a corporate trustee may be a good solution. In these cases, a sibling can take the role of trust protector overseeing the performance of the corporate trustee.

Planning can resolve many issues in the care for an individual with special needs. Building a team of capable advisors, attorneys and planners to provide support now is the best approach. This will help the individual reach their highest potential in life.

Dean Russell is a Chartered Special Needs Consultant, a Certified Financial Planner professional and a member of the Financial Planning Association of Greater Kansas City. Dean is a managing director with Symphonic Financial Advisors and leads their Special Needs Planning services.

This story was originally published July 27, 2021 at 5:00 AM.