Sibling Caregivers Meet Unexpected Challenges

MassMutual and Easter Seals Study Finds Many Face Unforeseen Costs and Unmet Expectations

Feb 21, 2013, 09:00 ET from MassMutual

SPRINGFIELD, Mass., Feb. 21, 2013 /PRNewswire/ -- When thinking about special needs caregivers, a parent, spouse or adult child typically comes to mind. Yet, the role that siblings play as caregivers is critical but often overlooked. Nearly a quarter of adults with disabled siblings serve as their primary care providers—a role 31 percent plan to fill in the future. And while many siblings already support brothers and sisters with special needs, future primary caregivers may face unrealistic expectations in terms of the time caregiving will take, and the support they will receive.

These are among the key findings of the Siblings Study, released today by Massachusetts Mutual Life Insurance Company (MassMutual) and Easter Seals. The survey explores the experiences of sibling caregivers as well as the services and supports their families need.

"There is an undeniable bond between siblings which can be especially close when one has special needs, but along with this relationship comes a unique set of circumstances and a great deal of responsibility," says Joanne Gruszkos, founder and director of the SpecialCareSM Program, MassMutual. "For sibling caregivers, it's critical to not only set realistic expectations, but also prepare financially, emotionally and physically."  

Key Findings

  • Only 33 percent of future caregivers feel financially prepared to care for siblings and seven in ten future caregivers worry about the cost of caring for their siblings.
  • The majority of current caregivers (75 percent) feel caring for their sibling is a full-time job, while only 55 percent of future caregivers expect it to be so.
  • Just 57 percent of current caregivers feel they receive the financial, emotional and physical support they need, something 67 percent of future caregivers expect to receive.
  • Sixty percent wish they knew more about planning for their sibling's care and finances.  However, just over a third report that they use special needs services. 

"At MassMutual we understand that caring for siblings with special needs can be daunting, but resources exist for those who seek them out," says Gruszkos.  "Since 2004, our SpecialCare Program has helped the families of the over five million children with special needs care for their loved ones." 

When the time is right, a few key considerations for caregivers include: 

-- Pick your Team
First and foremost, sibling caregivers need to find experienced professionals to help ensure informed health, educational, legal and financial choices are made. Building a team of experienced experts who can work together—often a lawyer, financial professional and healthcare professional—is critical. For this reason, caregivers should seek out those professionals with experience in working with special needs families.

-- Plan for the Future
The stakes in planning are high. Care should be taken when making financial, educational and healthcare decisions so as not to disqualify siblings with special needs from state and federal programs. Consulting a team of experienced professionals can help you make informed decisions.

-- Put Protections in Place
If you are a primary caregiver of a sibling, it's important to prepare a will and letter of intent—the latter provides information about your sibling's routines, medical issues, and preferences for living situations. Another consideration for caregivers is life and disability income insurance to ensure that your own needs are being met, and you can continue to provide for your sibling, even if disabled or deceased. Together, they ensure that care can be carried on for your sibling with a disability, should the worst come to pass.


Ipsos conducted two polls on behalf of Easter Seals and the study's sponsor, MassMutual:

  • A national survey among 1,392 adults age 18 and older who have an adult sibling. Ipsos conducted interviews between July 30 and August 1, 2012 via Ipsos' online omnibus. A survey with an unweighted probability sample of this size and a 100% response rate would have an estimated margin of error of +/- 2.6 percentage points 19 times out of 20 of what the results would have been had the entire U.S. population of adults ages 18+ with an adult sibling been polled.
  • A national survey of 351 adults who have a sibling with a developmental disability, including autism, an intellectual disability or a physical disability. Respondents were drawn from a variety of groups and organizations, including Easter Seals, the Sibling Leadership Network, and the Sibling Support Project.  Ipsos conducted interviews between July 26 and September 17, 2012. A survey with an unweighted probability sample of this size and a 100% response rate would have an estimated margin of error of +/- 5.2 percentage points.
  • All sample surveys and polls may be subject to other sources of error, including, but not limited to coverage error and measurement error.

About MassMutual's SpecialCare Program

The SpecialCare Program, developed exclusively by MassMutual, is an innovative outreach initiative that provides access to information, specialists, and financial products and services that can help improve the quality of life for people with disabilities and other special needs and their families and caregivers.

About MassMutual

Founded in 1851, MassMutual is a leading mutual life insurance company that is run for the benefit of its members and participating policyowners. The company has a long history of financial strength and strong performance, and although dividends are not guaranteed, MassMutual has paid dividends to eligible participating policyholders consistently since the 1860s. With whole life insurance as its foundation, MassMutual provides products to help meet the financial needs of clients, such as life insurance, disability income insurance, long term care insurance, retirement/401(k) plan services, and annuities. In addition, the company's strong and growing network of financial professionals helps clients make good financial decisions for the long-term.

MassMutual Financial Group is a marketing name for Massachusetts Mutual Life Insurance Company (MassMutual) and its affiliated companies and sales representatives. MassMutual is headquartered in Springfield, Massachusetts and its major affiliates include: Babson Capital Management LLC; Baring Asset Management Limited; Cornerstone Real Estate Advisers LLC; The First Mercantile Trust Company; MassMutual International LLC; MML Investors Services, LLC, Member FINRA and SIPC; OppenheimerFunds, Inc.; and The MassMutual Trust Company, FSB.

For more information, visit or find MassMutual on Facebook, Twitter, LinkedIn, YouTube and Google+.

About Easter Seals

Easter Seals is the leading non-profit provider of services for individuals with autism, developmental disabilities, physical disabilities and other special needs. For more than 90 years, they have been offering help and hope to children and adults living with disabilities, and to the families who love them. Through therapy, training, education and support services, Easter Seals creates life-changing solutions so that people with disabilities can live, learn, work and play. Visit

Karen Lavariere-Sanchez


SOURCE MassMutual