Autism Strains Family Finances

Ruzanna Harutyunyan's picture
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Caring for children with autism is wreaking havoc on family finances across America, jeopardizing current and long-term care and security, according to a new study, Living with Autism, released today by Easter Seals and Massachusetts Mutual Life Insurance Company (MassMutual).

"No one expected the problems and challenges to be so severe for families living with autism -- the numbers are stark and point to the pervasiveness of this public health crisis," said John Chandler, senior vice president and chief marketing officer of MassMutual's U.S. Insurance Group. "The study reveals that many families are exposed to serious financial risk due to a lack of awareness and planning."

For example, of parents having children with autism:

-- 74 percent fear their children will not have enough financial support after the parents die (compared to only 18 percent of parents with typically developing children)

-- 52 percent say caring for their child drains the family's current financial resources (compared to 13 percent)

-- 47 percent say the cost of care financially impacts how they raise typically developing siblings

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"The good news is that, with increased awareness and the right help, this is one piece of the autism puzzle that parents can begin to solve," added Chandler.

"There's a lot at stake," said Joanne Gruszkos, director of the SpecialCare(SM) program at MassMutual. "By not addressing financial and life care planning needs, or addressing them with inexperienced professionals, a lot of these families could, at the very least, risk losing the government services that are a real lifeline for children with autism."

The study found that despite overwhelming need, most parents don't seek out the help of skilled financial professionals for a variety of reasons, including lack of time, not knowing where to start, and simply being overwhelmed. "Even when they do reach out, the help can be misguided because it comes from financial professionals who are not trained specifically to deal with complex cases involving special needs," added Gruszkos. "Run-of-the-mill planning can backfire."

The study found that:

-- only half of families surveyed receive professional financial advice
-- only 38 percent have designated a guardian
-- only 17 percent have created a Special Needs Trust, which can be an important funding vehicle
-- only 24 percent have identified living arrangements if the parent is no longer living

MassMutual's SpecialCare program is an innovative outreach initiative developed exclusively by MassMutual to provide 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.

"Life care planning is a growing area of financial services need, as awareness and occurrence of disabilities and special needs increases across the country," explained Gruszkos. "MassMutual has more than 200 Special Care Planners across the U.S. who have received advanced training in estate and tax planning concepts, special needs trusts, government programs, and the emotional dynamics of working with special needs families and caregivers," she added.

"There is an urgent need for increased funding and services -- especially for adults with autism. Easter Seals and MassMutual want to help change all of this and make a difference for families living with autism today," concluded Patricia Wright, Ph.D., MPH, Easter Seals' national director, autism services.

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