Easter Seals' Study Sheds New Light on Parents' Life-Long Fears, Anxieties and Critical Supports Needed to Raise a Child With Autism

Tuesday, December 16, 2008 General News
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WASHINGTON, Dec. 16 Parents of children with autism arestruggling with a host of worries that impact every aspect of their lives, andare particularly fearful that their family will lack the life-long supportsneeded to address the significant challenges of autism, according to a newstudy released today by Easter Seals and made possible by MassMutual FinancialGroup.

Easter Seals' Living with Autism Study results reveal parents raisingchildren with autism are very concerned about the future independence of theirchildren. In fact, they're far more concerned than parents of typicallydeveloping children -- nearly 80 percent say they're extremely or veryconcerned about their children's independence as an adult, compared to only 32percent of other parents. This is especially true when it comes to theirfinancial independence, quality of life, social and inter-personalconnections, and employment and housing opportunities -- and with good reason.

Autism is a growing public health crisis, with millions of familiesdesperate for solutions and resources. Easter Seals and others in the autismcommunity are doing their best, but current systems, structures and resourcesto help people with autism and their families do not adequately meet thegrowing need, especially for adults with autism.

"The study quantifies what we've heard anecdotally over the years," saysPatricia Wright, Ph.D., MPH, Easter Seals national director, autism services."The one consistent message Easter Seals hears from the families we serve --after the initial apprehension and anxiety of learning their child has autism-- is an overwhelming concern about the life-long supports their child withautism may need to be independent."

Study Shows Parents' Hope for Independence...Financial and Otherwise

The nationwide study provides new insight into the ongoing challengesfacing individuals and families living with autism, particularly theirconcerns about the future. It's unique in that it closely considers andquantifies the very real concerns of parents of children with autism inrelation to parents of typically developing children.

"Families living with autism face so many challenges on a daily basis,"says John Chandler, senior vice president and chief marketing officer ofMassMutual's U.S. Insurance Group. "But this study has really brought home forus how much stress they face when it comes to their current financialsituation, the future of their child with autism, their other children andtheir own retirement. Our hundreds of Special Care Planners across the countryare in a great position to help make at least this part of their struggleeasier."

As an Easter Seals corporate partner and the study sponsor, MassMutual iscommitted to serving people living with autism and other disabilities throughits exclusive SpecialCare(SM) program, an innovative solution that givesfamilies with individuals with special needs access to information,specialists, and financial strategies that can help improve their quality oflife.

Easter Seals worked with Harris Interactive, and in cooperation with theAutism Society of America, to conduct the Living with Autism Study and survey1,652 parents of children who have autism and 917 parents of typicallydeveloping children about daily life, relationships, independence, education,housing, employment, finances and healthcare.*

Study Findings to Drive Solutions

"Easter Seals strives to make data-based-decisions," Wright says. "Withthis study, the disparities that parents of typically developing children andparents of children with autism experience can now be shared via solidnumbers."

Easter Seals will use the study results to raise awareness of and advocatefor the life-long services millions of families living with autism desperatelyneed -- including school to work transitions, employment support, residentialand community support, and financial planning.

"For parents of kids with autism, there are no simple answers," addsWright. "There is an urgent need for increased funding and services --especially for adults with autism. Easter Seals wants to help change all ofthis and make a difference for families living with autism today."


This Easter Seals' Living with Autism Study was conducted online withinthe United States by Harris Interactive on behalf of Easter Seals between June16 and July 17, 2008 among 1,652 parents of children age 30 and under who haveautism and 917 parents of typically developing children age 30 and under. Noestimates of theoretical sampling error can be calculated; a full methodologyis available.

About Easter Seals

Autism is a lifelong disability that affects the way a person's brainfunctions, involving challenges in communication, social skills, andbehaviors. While there is no known cause or cure, autism is treatable andpeople with autism can -- and do -- lead meaningful lives. Easter Seals is theleading non-profit provider of services for individuals with autism,developmental disabilities, physical disabilities and other special needs. Fornearly 90 years, we have been offering help and hope to children and adultsliving with disabilities, and to the families who love them. Through therapy,training, education and support services, Easter Seals creates life-changingsolutions so that people with disabilities can live, learn, work and play.Visit http://www.easterseals.com or http://www.actforautism.org to learn moreabout autism, find services at an Easter Seals near you, or help change thelives of people living with autism by becoming a donor or volunteer.

About Harris Interactive(R)

Harris Interactive is a global leader in custom market research. With along and rich history in multimodal research that is powered by our scienceand technology, we assist clients in achieving business results. HarrisInteractive serves clients globally through our North American, European andAsian offices and a network of independent market research firms. For moreinformation, please visit http://www.harrisinteractive.com.

About MassMutual Financial Group

MassMutual is a leader in helping people with disabilities and otherspecial needs and their families through its exclusive SpecialCare(SM)Program, an innovative outreach initiative that provides access toinformation, specialists, and financial solutions that can help improve thequality of life for people with disabilities and other special needs and theirfamilies and caregivers. For more information and resources on autism, go tohttp://www.massmutual.com/autism.

MassMutual Financial Group is a marketing name for Massachusetts MutualLife Insurance Company (MassMutual) and its affiliated companies and salesrepresentatives. MassMutual and its subsidiaries had more than $500 billion inassets under management at year-end 2007. Assets under management includeassets and certain external investment funds managed by MassMutual'ssubsidiaries. Founded in 1851, MassMutual is a mutually owned financialprotection, accumulation and income management company headquartered inSpringfield, Mass. MassMutual's major affiliates include: OppenheimerFunds,Inc.; Babson Capital Management LLC; Baring Asset Management Limited;Cornerstone Real Estate Advisers LLC; The First Mercantile Trust Company; MMLInvestors Services, Inc., member FINRA and SIPC (http://www.finra.org andhttp://www.sipc.org); MassMutual International LLC and The MassMutual TrustCompany, FSB. MassMutual is on the Internet at http://www.massmutual.com.

About the Autism Society of America (ASA)

ASA, the nation's leading grassroots autism organization, exists toimprove the lives of all affected by autism. We do this by increasing publicawareness about the day-to-day issues faced by people on the spectrum,advocating for appropriate services for individuals across the lifespan, andproviding the latest information regarding treatment, education, research andadvocacy. For more information, visit http://www.autism-society.org.A sampling of the findings: -- Parents of children living with autism are very concerned about their children fitting into society, with very few feeling their children will be able to: o Make his or her own life decisions (14% compared to 65% of parents with typically developing children) o Have friends in the community (17% compared to 57% of typical parents) o Have a spouse or life partner (9% compared to 51% of typical parents) o Be valued by their community (18% compared to 50% of typical parents) o Participate in recreational activities (20% compared to 50% of typical parents) -- Children with autism also are less likely than their typically developing peers to have bank accounts (37% vs. 55%) and use electronic products like cell phones (9% vs. 41%) or MP3 players (23% vs. 49%) -- all tools of mainstream society. -- Many parents of children with autism report they're "financially drowning," with concerns for their children's financial independence seeming to far surpass the worries of typical parents. Seventy-four percent of parents of children with autism fear their children will not have enough financial support after they die, while only 18% of typical parents share this fear. They also express extreme financial strains and costs associated with caring for a child with autism, with more than half stating that the cost of caring for my child: o Drains my family's current financial resources (52% compared to 13% of typical parents) o Will drain my family's future finances (50% compared to 10% of typical parents) o Will cause me to fall short of cash during retirement (54% compared to 13% of typical parents) -- Key to adult independence is employment, yet only 24% of teenagers with autism have looked for a job, compared to 77% of their typically developing peers. And 76% of parents of children with autism are concerned about their child's future employment, when only 35% of typical parents share this fear.

SOURCE Easter Seals

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