| ||||||||||||
Caring for a loved one with special needs demands great time and attention — providing assistance with activities of daily living, managing schedules to support their social and emotional well-being, and navigating the public benefits system to help pay for their care.
But planning for a future when you are no longer there is just as essential. By designating a successor caregiver and outlining your vision for the ongoing care of the individual with special needs, you can help make the transition as seamless as possible.
“It is so important to have a successor caregiver named in advance to ensure that there is continuity of care for the elderly or disabled person being cared for,” said Patrice Heinz, chief operating officer for the National Alliance for Caregiving in Washington, D.C., and mother and primary caregiver to her 32-year-old daughter, Ashley. “It means that there will be someone who is ready and prepared to step in right away if the primary caregiver becomes ill, incapacitated, or passes away.”
Preparation, she said, helps preserve quality of life for the individual with special needs and brings peace of mind for the primary caregiver.
What is a successor caregiver?
A successor caregiver is the person who assumes responsibility for the individual with special needs when the primary caregiver, often the parent, can no longer provide that care themselves due to death or incapacity.
In some cases, the successor caregiver may be a sibling or family friend. It might also be a private caregiver or case manager.
Succession planning for future caregivers enables the original caregiver to bring them into the fold sooner, introduce them to the special-needs care team (doctors, therapists, and case managers), and train them on the daily routines and preferences of the individual with special needs.
“If decisions are not made and discussed ahead of time, remaining family members will be left to figure things out on their own,” said Karen Starbowski, a MassMutual SpecialCare Planner in Scottsdale, Arizona. “This could mean that the loved one with special needs does not end up living where the primary caregivers had wished or where the individual with special needs wanted to live. Or, that the family members who step in to help, though well-intentioned, may not be educated about government benefits and how to protect those important resources for individuals with special needs.”
Every family must decide for itself how best to allocate future caregiving responsibilities. For example, some successor caregivers might wish to share responsibilities with another family member or with a part-time professional caregiver.
And, if a sibling has been involved in the daily care of the individual with special needs, but would rather not assume the official role of caregiver, he or she might still be willing to act as their financial or legal advocate (successor guardian).
A successor caregiver may be different from the successor guardian
Indeed, the successor caregiver may be different from the successor guardian — the person(s) who will assume the legal right to make decisions for the individual with a disability about housing, medical treatment, finances, and education.
“A successor guardian is legally put in place by the court, hopefully via the family’s plan,” said Starbowski. “There are times where the successor guardian may not wish to do the day-to-day caregiving duties for the individual with special needs. In these cases, they may hire someone for caregiving. And again, hopefully, this was mapped out by the family in their estate plan before their passing.”
Starbowski said it is critical that primary caregivers legally designate the person who will serve as both the successor caregiver and the successor guardian for their dependent with special needs. This can be accomplished through their estate planning documents, including their last will and testament.
It is equally important that they communicate with the successor caregiver in advance to secure their buy-in for the role so there are no surprises when the primary caregiver passes away, she said.
Primary caregivers may wish to begin handing over caregiving duties to the successor caregiver gradually while they are still there to answer questions and offer guidance. That also gives the individual with special needs time to develop a closer bond with their future caregiver, which may help reduce stress and anxiety.
And it provides a reality check for the successor caregiver of the time commitment and expense that may be involved. Remember, many successor caregivers have to balance the needs of their families as well as the responsibilities of the individual with special needs, which can take an emotional and economic toll.
It is imperative for successor caregivers to have all of the available information and resources in place to assist them, said Heinz.
Person-Centered Life Care Planning with Integrated Legal and Financial Strategies
A person-centered approach to life care planning places the individual with special needs at the heart of the process, ensuring that their well-being and quality of life remain the central focus. This planning involves a coordinated and evolving strategy that integrates social, medical, financial, and legal components to support both the individual and their family.
A life care plan is not static—it adapts over time to meet the changing needs of the person and aligns with broader family goals. It should seamlessly incorporate estate planning, legal and financial considerations, and government benefits to help realize the vision you have for your loved one’s future. The ultimate goal is to create a comprehensive framework that promotes long-term stability, dignity, and the highest possible quality of life.
When working with families with a loved one with special needs, Starbowski said she begins with a review of their financial plan.
“We typically start with the family’s financial plan first to ensure that they can meet their needs and goals — and to determine what assets will be remaining upon their passing,” she said. “Then we go on to create the life care plan for the loved one with special needs that enables them to attain the best quality of life possible.”
Consider additional trusts to help alleviate costs incurred by the caregiver
In many cases, families with a dependent with special needs create a special needs trust, a legal entity which enables them to set money aside for their loved one without jeopardizing their current or future eligibility for means-tested public benefits like Medicaid or Supplemental Security Income (SSI).1
The assets in the trust can be used to pay for things that enhance the beneficiary’s quality of life which are not covered by public assistance.
Individuals with special needs may also have savings held in an ABLE account, which enables them to earn a modest income without jeopardizing their access to government benefits.
But primary caregivers may wish to consider setting up additional trusts that can provide the successor caregiver with added financial assistance and flexibility.
According to the Journal of Financial Service Professionals, those may include the following:2
- Caregiver trust, which can be set up to alleviate some of the cost of providing care by the caregiver and pay for certain items not covered by a special-needs trust.
- Legacy trust, which is an irrevocable trust that enables you to transfer assets from your primary estate to the trust, which acts like a secondary estate.
- Spendthrift trust, which allows for a beneficiary to receive funds incrementally (this would not necessarily be a good option for an individual on resource-tested government benefits).
A financial professional with specialized knowledge of special needs planning and benefits can help you determine which tools and trusts may be appropriate for your family.
Drafting a letter of intent
Primary caregivers of a dependent with special needs should also prepare a letter of intent, which will enable future caregivers to pick up where they left off — a critical step in helping their loved one feel safe and supported.
A letter of intent is not legally binding. Rather, it is a document that captures all the primary caregiver’s desired outcomes for their loved one with special needs, detailing their treatment history and preferences.
It should include:
- Housing goals — where you would like your loved one with special needs to live.
- Contacts for their doctors, therapists, and case managers.
- A medication and treatment history.
- A record of the public (government) benefits the individual with special needs uses.
- Personal preferences related to activities of daily living.
- Triggers and behaviors.
- Habilitation plans to promote independence (physical therapy, occupational therapy, speech-language pathology).
- Social connections — peers/family members that the care recipient trusts.
- Safeguards, including a backup successor caregiver.
- Insurance and banking information.
- Special-needs trust information.
- Advance medical directives.
A letter of intent should be collaborative and drafted with input from all members of the special-needs care team who interact with the person with a disability — doctors, therapists, case managers, attorneys, and financial professionals, as well as the individual with special needs, if applicable.
It should continually evolve to adapt to the needs of the individual with special needs throughout his or her life. It should outline steps to support their independence, including vocational training and life skills development to enhance their autonomy. And, above all else, it should be patient-centered, putting the wants and needs of the person with a disability first, said Heinz.
“A letter of intent will go a long way to safeguard your care recipient,” she said. “Use it to document their daily routines, medical needs, medications, dietary requirements, and personal preferences. In documenting these things, I have found it very useful to write from the perspective of the care recipient.”
Questions to consider:
- What do they like and dislike about their daily routine?
- What motivates them?
- What do they like to eat?
- How do they wish to interact with their doctors or others around them?
- How do they react to taking medicine?
- What is the best way to communicate with them?
- What equipment do they rely on to get through the day.
- What centers their life?
MassMutual’s SpecialCare program offers a customizable letter of intent template to help you tailor it to your specific needs and circumstances.
Conclusion
By planning ahead, primary caregivers can help ensure that their loved one with special needs will enjoy the highest quality of life possible for as long as they live. They can also make the transition more successful for the successor caregiver and the care recipient.
“It is very helpful to have plans in place before you need them because it gives you, the primary caregiver, the opportunity to discuss them with the successor caregiver ahead of time, and for the successor caregiver to ask questions, learn about the needs of the care recipient, and become familiar with the essential factors shaping their lives,” said Heinz. “Whoever you choose, it should be someone who you trust, and who is willing and committed to making sure the care recipient’s quality of life is maintained at the level they have had.”
Discover more from MassMutual…
Living with special needs: The sibling perspective
How to find family balance with a child with special needs
Need a financial professional? Find one here
1 For more information regarding benefits provided Medicaid (Medi-CAL in California) visit www.medicaid.gov. Medicaid guidelines vary by state. Contact your local Medicaid office for details. For more information on SSI visit www.ssa.gov.
2 Journal of Financial Service Professionals, “Focus on Estate Planning & Financial Planning: Special Needs Estate Planning — Seven Overlooked Challenges,” August 2019.
