There are days when the appointments, therapies, and paperwork seem endless. There are moments when caregivers wonder if anyone else truly understands the weight they carry, or the fierce hope they hold for their loved one’s future. Yet, in the midst of these challenges, there are also moments of deep connection when a small milestone is reached, a smile is shared, or a new word is spoken. These moments remind them why they give so much of themselves.
Across the country, millions of families are walking this path. According to the most recent national survey, nearly one in four American adults, an estimated 63 million people provided ongoing care to adults or children with a medical condition or disability in the past year.1 Of estimated 63 million people, 4 million cared for a child under 18 with an illness or disability, highlighting just how many families are touched by special needs caregiving.1 The number of caregivers has increased by 45% since 2015, a reflection of both an aging population and rising diagnoses of developmental and intellectual disabilities, as well as greater awareness and inclusion.1
For families with a loved one with special needs, the demands can be especially intense. On average, caregivers spend 27 hours per week providing care, and nearly a quarter devote 40 or more hours weekly, equivalent to a full-time job.1 Many are “sandwich generation” caregivers, balancing the needs of a child with disabilities and an aging parent at the same time
Financial Realities of Caregiving
One of the most difficult aspects of caring for a loved one with special needs is the financial strain it can bring. The reality is that nearly half of all caregivers report experiencing at least one negative financial impact due to their caregiving responsibilities.1 For families supporting a special needs dependent, the costs can be higher, ranging from therapies and adaptive equipment to lost income when a caregiver needs to reduce work hours or leave the workforce entirely. Thirty-one percent of caregivers have stopped saving money, 24% have used up short-term savings, and 23% have taken on more debt. Alarmingly, 14% have been unable to afford basicexpenses like food.1 These numbers remind us that caregiving isn’t just an act of love. It’s a commitment that often comes with hidden financial challenges, making awareness and support from family, friends, and community more important than ever.
The Double Duty of Working Caregivers
Balancing employment and caregiving is another major challenge. Seventy percent of working-age caregivers are employed while providing care. Half of these caregivers report work impacts, such as: arriving late, leaving early, or taking time off.1 Many caregivers hesitate to disclose their role at work, and only about half say their supervisor knows they are a caregiver. The good news is that access to flexible work arrangements, paid leave, and employee assistance programs has improved in recent years, reflecting a growing recognition of caregivers’ needs in the workplace. More employers are beginning to understand and value the unique strengths and dedication that caregivers bring to their teams. While gaps remain, there is hope in the progress being made, and every step forward helps create a more supportive environment for working caregivers.
Mind and Body Impact
The emotional and physical demands of caregiving can be truly overwhelming at times. Many caregivers quietly struggle with their own well-being. One in five rates their health as fair or poor, and nearly a quarter find it difficult to care for themselves while tending to the needs of another. High emotional stress is all too common, affecting nearly two-thirds of caregivers, and almost half experience physical strain from their daily responsibilities. Feelings of isolation can creep in, with about one in four caregivers saying they often feel alone in their journey. Even in the midst of these hardships, it’s remarkable that more than half of caregivers find a deep sense of purpose and meaning in the care they provide.1 The journey may not always be easy, but the love, dedication, and hope that caregivers and their families bring to one another make a lasting difference, not just for their loved ones, but for the entire community.
For Family Members and Friends : How You Can Help
If you are a friend, coworker, sibling, grandparent, or extended family member of someone caring for a special needs dependent, your support can make a world of difference. Caregivers often feel isolated, and even small gestures of understanding and kindness can lighten their load. Here are some ways you can help:
Offer Practical Help
Sometimes, the best support is concrete. Offer to run errands, prepare a meal, babysit siblings, or help with household chores. Even a short break can be a gift to a caregiver.
Be a Good Listener
Caregivers may not always need advice, but they do need someone to listen without judgment. Let them share their frustrations and triumphs, and acknowledge their feelings.
Include the Whole Family
Invite the family to social events, even if they sometimes must decline. Isolation is a common challenge, and feeling included matters.
Learn About Their Loved One’s Needs
Take time to understand the specific challenges and strengths of the person with special needs. This shows respect and helps you offer more meaningful support.
Encourage Self-Care
Remind caregivers that it’s okay to take time for themselves. Offer to help so they can attend a support group, go for a walk, or simply rest.
Celebrate Achievements
Every milestone, no matter how small, is worth celebrating. Recognize the hard work and progress of both the caregiver and their loved one.
Respect Their Expertise
Family caregivers become experts in their loved one’s needs. Trust their judgment and avoid second-guessing their decisions.
Practical Ways to Lighten the Financial Load
Consider ways you can help ease the financial burden. Gift cards for groceries, offering to cover a therapy session, or simply helping with everyday expenses can make a real difference.
For Caregivers: Remember, You Are Not Alone
• Prioritize Your Own Care: Your emotional and physical health matters just as much as your loved one’s. Make time for small moments of rest, whether it’s a walk outside, a deep breath, or a chat with a friend. Nourish your body with healthy meals, and give your mind space to recharge through hobbies or quiet reflection. Remember, when you care for yourself, you’re better equipped to provide the love and support your loved one needs. You deserve care, too.
• Lean on Your Circle: Don’t hesitate to ask family and friends for help. Sharing the load is a sign of strength, not weakness. Whether it’s running errands, providing respite care, or simply listening, loved ones often want to support you, but may not know how. Let them in and allow yourself the relief that comes from knowing you’re not alone.
• Discover Support in Your Community: Connecting with local nonprofits, advocacy groups, and community programs can offer resources, guidance, and emotional support. Connecting with other families through support groups can also reveal new ideas and opportunities.
• Tap Into Professional Support: Seek out organizations and professionals who specialize in helping families like yours. Special needs attorneys and financial professionals experienced in special needs planning can help you create a plan that safeguards your loved one’s benefits and financial future. These experts exist to make your journey easier. Reach out and take advantage of their knowledge.
• Explore Benefits and Assistance: Government programs can provide valuable benefits and assistance for individuals with disabilities that can help ease financial strain and improve quality of life. From healthcare coverage and income support to housing and educational resources, these programs are designed to protect your loved one’s future. Take time to research options like Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). Reach out to your local government agencies for information. Explore ABLE accounts, which allow for tax-advantaged savings without jeopardizing eligibility for government programs.
• Advocate for Yourself: If you’re employed, talk to your HR department about flexible work arrangements, paid leave, or employee assistance programs. Many workplaces are becoming more understanding and supportive of caregivers.
Despite the many hurdles, caregivers of loved ones with special needs demonstrate remarkable strength and resourcefulness. They are the backbone of our communities, providing billions of hours of unpaid care each year. As the number of caregivers continues to rise, it is more important than ever to recognize their contributions, address their needs, and support their well-being.
References
1. Statistics-Caregiving in the US Report July 2025_NAC.pdf – National Alliance for Caregiving & AARP, “Caregiving in the US 2025.” https://www.caregiving.org/research/caregiving-in-the-us/
SpecialCareSM is a program created by MassMutual that provides access to
information, specialists and financial solutions to people with disabilities
and their families. For more information about Massachusetts Mutual Life Insurance Company (MassMutual) and its SpecialCare program, please visit www.massmutual.com/specialcare.
The information provided is not written or intended as specific tax or legal advice. MassMutual, its subsidiaries, employees, and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. Individuals involved in the estate planning process should work with an estate planning team, including their own personal legal or tax counsel.
ABOUT THE AUTHOR:
Kelly Piacenti is Head of MassMutual’s SpecialCare program with nearly 500 Special Care Planners. She oversees partnerships with some the largest national special needs non-profit organizations and serves on the National Board of Directors for United Cerebral Palsy. She also serves on the Advisory Board for The Academy of Special Needs Planners, as well as The American College Center for Special Needs Planning. Kelly often lectures at industry conferences and is published and quoted in numerous industry publications for the special needs community. She has four children and was the mother of a son with special needs for 19 years.
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