The Deliberation Disconnect: Parents of Adults with Disabilities Gravely Concerned about Children's Future; Take Little Action
MassMutual-Sponsored Living With Disabilities Study Spotlights Physical, Emotional and Financial Strain of Caring for Adult Children with Disabilities; “ We Are a Wreck,” Says One Parent
Nov 4, 2010
(Springfield, MA) - New research by Massachusetts Mutual Life Insurance Company (MassMutual) and Easter Seals, released today, starkly shows the deep level of concern that parents have for the future of their adult children with disabilities, but indicates that these parents have done very little to prepare for the day that their children will be on their own.
The MassMutual-sponsored Easter Seals Living with Disabilities Study, conducted online by Harris Interactive, indicates that as many as 62 percent of parents don’t feel their adult children with disabilities can take care of themselves, and close to three quarters (74 percent) don’t see their adult children with a disability as financially independent. This is in stark contrast to the 11 percent of parents who don't believe their typically developing adult children can take care of themselves and the 35 percent who don't see their children as financially independent.
But despite the high level of concern with their adult children’s ability to survive without them, parents have done very little of the planning needed to ensure their children with disabilities will be adequately cared for, once they are gone, especially concerning guardianship. Seventy percent of parents of adult children with a disability have not designated a guardian. Three quarters (74 percent) have not developed an estate plan; 94 percent have no life care plan.
“What is startling and concerning in the study, but in some ways not surprising, is that although this huge concern and worry weighs on these parents and these caregivers, they have taken a limited amount of actual action to make plans that provide opportunities and alternatives,” said John W. Chandler, Jr., senior vice president and chief marketing officer for MassMutual. “There is a large gap between the awareness of the issue and actions to address the issue.”
Strain on Family
Parents of adult children with disabilities also paint a stark picture of the physical, emotional and financial impact of caring for an adult child with a disability and indicate they receive little support from family and friends. They have made financial sacrifices to cover the cost of caring for their adult child with a disability and still are not hopeful that their child will be able live independently.
Ninety-one percent of parents of adult children with disabilities said they receive little or no financial support from extended family or friends, related to caring for their son/daughter with a disability; 82 percent receive little or no physical support and 48 percent little or no emotional support.
Close to half (49 percent) of parents of adult children with a disability say the cost of caring for their children has negatively impacted their ability to save for retirement; 28 percent say it has negatively impacted their ability to pay for education for other children. Half (49 percent) say their quality of life has been somewhat or very negatively impacted by their children’s disability and half (51 percent) also say their children’s disabilities somewhat or very negatively affected their family.
“Financially, emotionally, and physically we are a wreck!!” concluded one parent.
“Oftentimes fundamental issues, like planning for their own retirement, planning for the education of a child who is a typically developing sibling, all of those additional considerations lose focus because there is so much demand everyday for providing care,” observed Chandler.
“At an age when we should be considering retirement and all the benefits of a retired lifestyle, we can not,” a parent wrote.
How Can We Help?
MassMutual has been reaching out since 2004 to the families of the close to 55 million Americans who have a disability* through its SpecialCareSM program and has experienced the quickly growing need for help with life care planning. Partly in answer to this growing unmet need, MassMutual has joined forces with Easter Seals to sponsor research on autism and adults with special needs, supported the development of a documentary on the issues that children with autism face upon becoming adults and has been providing educational resources to help parents and their children of any age meet the challenges of life care planning.
“The reason that MassMutual developed the SpecialCare Program that we have,” explained Chandler, “with specialized certification and training, and sensitivity into estate planning issues, government benefit programs, and regulatory issues—is because it's very easy to create some fundamental mistakes or flaws in your plan, if you don’t work with a financial professional who is trained in life-care planning for special needs.”
The government has strict limits on how much money can be in the child’s name. If a child with disabilities accumulates more than $2,000 in total assets – including money in a bank account, bonds, or CDs – the child and his family could lose thousands of dollars in government funding and services.
“What we have found is that once there is a life-care plan in place, there is a tremendous lessening of that burden and concern about the future off parents’ shoulders—not in its entirety, because that can never go away. But, if we can do anything to help lessen the burden by helping to put the right plan in place, that's in some small part what we can try do to help both the future of the child, but also the burden of the caregiver,” Chandler concluded.
To read the full executive summary of the Easter Seals Living With Disabilities Study or watch a video of a round-table discussion of the results, visit www.massmutual.com/specialneeds. To learn more about MassMutual’s SpecialCareSM Program, visit www.massmutual.com/specialcare.
* Number of Americans With a Disability Reaches 54.4 Million, Dec. 18, 2008. http://www.census.gov/newsroom/releases/archives/income_wealth/cb08-185.html
About the Research
The Living with Disabilities Study was conducted online within the United States by Harris Interactive on behalf of Easter Seals and MassMutual between August 18, 2010 and September 13, 2010 among 1,714 adults over the age of 18. Of the total, respondents were segmented into one of three separate groups: 390 adults living with a developmental disability over the age of 18, 318 parents of adult children over the age of 18 who have developmental disabilities, and 1,006 parents of adult children over the age of 18 without disabilities.
Using the Harris Poll sample, as well as a sample provided by Easter Seals and other organizations including the Autism Society of America, National Council on Independent Living, American Association of People with Disabilities, and Justice for All, survey participants were queried about daily life, employment, finances, transportation, housing, independence, relationships, recreation, education, and healthcare. No estimates of theoretical sampling error can be calculated; a full methodology is available.
Founded in 1851, MassMutual is a leading mutual life insurance company that is run for the benefit of its members and participating policyholders. 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 every year 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, Inc., member FINRA and SIPC; OppenheimerFunds, Inc.; and The MassMutual Trust Company, FSB.
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, we 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. Support children and adults with disabilities at www.easterseals.com.
About Harris Interactive®
Harris Interactive is one of the world's leading custom market research firms, leveraging research, technology, and business acumen to transform relevant insight into actionable foresight. Known widely for the Harris Poll and for pioneering innovative research methodologies, Harris offers expertise in a wide range of industries including healthcare, technology, public affairs, energy, telecommunications, financial services, insurance, media, retail, restaurant, and consumer package goods. Serving clients in over 215 countries and territories through our North American, European, and Asian offices and a network of independent market research firms, Harris specializes in delivering research solutions that help us - and our clients - stay ahead of what's next. For more information, please visit www.harrisinteractive.com.