Most families with a child with special needs focus their planning efforts on that one child (if they’ve planned at all). They may create special needs trusts, arrange for guardianship, and ensure government benefits stay intact. But there's a critical piece missing from most plans: protecting the siblings who will eventually take over caregiving responsibilities. Without comprehensive estate planning that considers your entire family, siblings inherit not just caregiving duties but also financial and emotional responsibilities that can easily overwhelm the unprepared.
The reality is sobering. While many siblings expect to eventually become their brother or sister's primary caregiver, very few feel ready for that responsibility. This gap between expectation and reality creates a crisis that affects entire families. Understanding what siblings face can help you plan more effectively to protect everyone you love.
The Financial Burden Siblings Face
When siblings step into caregiving roles, they quickly discover the true financial cost. Most family caregivers spend thousands of dollars per year out of their own pocket on caregiving expenses, and the vast majority contribute some form of financial support to their loved one's care, often spending a significant portion of their income on housing, medical expenses, and transportation.
But the financial toll goes beyond direct expenses. A 2024 Columbia University study found that caregivers who begin their duties at a younger age are at risk of a 90% deficit in their retirement savings by age 65. This is a staggering number that shows just how much sibling caregivers sacrifice for their brothers and sisters with special needs. Lost income for caregivers totals hundreds of billions of dollars each year due to reduced work hours, missed promotions, and job loss.
The reality is stark: most caregivers are financially struggling, with many living paycheck to paycheck. The silence around planning creates a financial burden that catches siblings off guard at the worst possible time, right when they're grieving the loss of their parents.
These aren't just statistics. They represent real siblings struggling to balance their own financial security with their caregiving responsibilities. Without proper planning by parents, siblings inherit not just the responsibility of care but also the financial strain that comes with it.
While the financial costs are significant, the impact on sibling caregivers extends far beyond money. The physical and emotional toll of caregiving can be even more devastating.
The Physical and Emotional Toll
Caregiving takes a measurable toll on health. Research shows that caregivers experience significantly higher rates of depression and anxiety compared to non-caregivers. Almost half of caregivers have experienced increased mental health issues, and many report feelings of overwhelming stress and burden.
The time commitment alone is substantial. In 2025, caregivers spent an average of 27 hours per week providing care, up dramatically from nine hours per week in 2020. That's essentially a part-time job on top of everything else, and for many, it's even more intensive.
The caregiving role begins at the most difficult moment imaginable. Siblings are grieving the loss of their parents while simultaneously becoming responsible for complex medical decisions, financial and benefit management, housing arrangements, and daily care. This overwhelming combination of grief and new responsibilities, often without any training or preparation, is why so many sibling caregivers experience mental health challenges.
Many caregivers also neglect their own health needs. They skip doctor appointments, don't exercise regularly, and put off their own medical care because they're so focused on caring for someone else. This inattention to their own well-being creates long-term health risks that compound over time.
The stress and exhaustion of caregiving don't just affect individual siblings. They ripple through entire families, often bringing old tensions to the surface in painful ways.
The Family Dynamic
The loss of parents marks a fundamental shift in family relationships. Suddenly, siblings must work together to manage their brother or sister's care, make joint decisions about living arrangements, and coordinate complex medical and financial matters.
The emotional complexity multiplies when old family dynamics resurface. Childhood rivalries, perceived favoritism, and differing coping styles create friction at exactly the moment when siblings need to work together most. One sibling typically shoulders the majority of the work, breeding resentment. Others may want to help but don't know how, live far away, or cope with loss in ways that look like avoidance.
This tension is remarkably common among caregiving families. Sibling rivalries and disagreements that might have been manageable before suddenly become major sources of stress when caregiving responsibilities are added. That tension doesn't disappear when caring for an adult brother or sister with special needs. It intensifies because this caregiving role may last for decades.
Given these overwhelming financial, emotional, and family challenges, the question isn't whether to plan but when. And the answer is clear: now, while you're still able to make these critical decisions.
Why Planning Matters Now
Adults with special needs are living longer than ever before. This means siblings need to prepare for a caregiving role that could span 30, 40, or even 50 years. Without proper planning, siblings face impossible choices: drain retirement savings, sacrifice career advancement, strain marriages, or feel perpetual guilt about not doing enough.
This is where special needs planning becomes critical, not just for the individual with special needs, but for the entire family. Special needs trusts protect government benefits while providing supplemental funds for care. Guardianship arrangements clarify decision-making authority and cooperation of medical providers. Housing plans ensure your loved one has a safe, appropriate place to live when you can no longer provide daily care. And a Lifetime Asset Protection Trust for a caregiver sibling can preserve their own inheritance from various storms of life - divorce, lawsuits, disability, etc.
Equally important is financial planning that protects sibling caregivers. Life insurance can fund special needs trusts without depleting the family estate, and ABLE accounts offer tax-advantaged savings that benefit your loved one with special needs.
Comprehensive estate planning protects not only your child when you’re gone, but also promotes family harmony. It ensures resources are distributed fairly and allows you to eliminate the ambiguity that often leads siblings to fight during an already difficult time. Comprehensive planning isn’t just about money. It’s a gift for the people you love most.
How We Help You Plan for Your Child's Future
If you have a child with special needs, the time to plan is now, while you're still here to make these decisions and ease your children into their future roles. We can help you create a comprehensive plan that ensures your child with special needs is cared for when you’re gone, without destroying your other children's financial futures in the process.
The cost of caregiving, financial, physical, and emotional, is real and substantial. But with proper planning, you can significantly reduce that burden. You can create systems that protect both your loved one with special needs and the siblings who will care for them. We'll walk you through all your options and set up your plan so you can have peace of mind about everyone's future.
Book a call with me here, and let me get you on the road to peace of mind.
This article is a service of Ralston Law, a Personal Family Lawyer® Firm. We don’t just draft documents; we ensure you make informed and empowered decisions about life and death, for yourself and the people you love. That's why we offer a Family Wealth Planning Session™, during which you will get more financially organized than you’ve ever been before and make all the best choices for the people you love.
The content is sourced from Personal Family Lawyer® for use by Personal Family Lawyer® firms, a source believed to be providing accurate information. This material was created for educational and informational purposes only and is not intended as ERISA, tax, legal, or investment advice. If you are seeking legal advice specific to your needs, such advice services must be obtained on your own, separate from this educational material.