Moms and dads plan for family trips, college and weddings, but life sometimes throws a curve called autism.
And it's hitting more and more families. An average of one in 110 children in the United States has an autism spectrum disorder.
These neurodevelopmental disorders can make communication and social interaction difficult, sometimes impossible.
Parents must pencil out how they will pay for everything that is needed -- sometimes for a child's lifetime.
Medical costs alone can be staggering. A person with autism may pay almost double the $317,000 a typical American spends on direct medical costs over a lifetime.
What can parents do? Plan, attorneys and financial advisers say. Otherwise, probate court battles could last for years and leave scars for their children and surviving relatives.
"A lot of people put off this kind of planning because you're talking about death and disability," said Brian Wyatt, a lawyer in Sacramento, Calif., who does special-needs planning.
It's normal to feel overwhelmed, considering the complicated tax and legal issues and the financial commitment. But not all bills will come due at once.
"The earlier people get started on this, the better off they'll be, because it's more time that they'll have to achieve their goals," Wyatt said. A comprehensive plan can be executed in a matter of weeks.
It takes a village to raise a child. In the case of a child with an autism spectrum disorder, the villagers will carry titles such as designated guardian, financial planner, special-needs planner and estate planning attorney.
Whatever their titles, these professionals should put their clients at ease and advise them of all the options. They will have a list of questions to ask and will be able to tailor a plan to any family's situation.
How do you find professionals to help you?
Talk with other parents who have children with autism. See whether your child's doctor has recommendations. Ask friends to ask attorneys for suggestions.
Seek estate attorneys and financial planners who have past experience working with families with special-needs children. Often, they will have ties to the Academy of Special Needs Planners or other specialized professional organizations.
Or, contact the local bar association for attorney recommendations. At http://www.cfp.net and http://www.fpanet.org, you can search for financial planners by ZIP code.
Name a guardian -- this choice is crucial.
Parents will want a guardian for their child and a guardian for the estate, said Elizabeth Ikemire, an expert in special-needs trusts. Naming a guardian for minor children will eliminate the risk of a judge deciding who would care for your children.
Guardianship ends at age 18. Depending on the severity of the child's disability, the parent may need to name a conservator to help with caretaking and health-care decisions.
The estate's guardian, or trustee, will care for the beneficiary's financial matters, so look for people with unimpeachable honesty and integrity.
The same person can be named guardian of the person and estate. That's what Neal and Kristin Hinson, of Lincoln, Calif., have done. Two of their sons, Justin, 7, and Simon, 4, have been diagnosed with autism spectrum disorders. Noah, 1, is exhibiting signs of autism. Their 9-year-old daughter, Millie, is a typically developing child.
The Hinsons selected Fred and Rodna Hinson, Neal's parents, to be both guardians and trustees for their four children. If something happened to Neal and Kristin Hinson while their children were minors, they know his parents would rear their kids with love and devotion.
Joel Larsen, of Navion Financial Advisors of Davis, Calif., called it: "the who, what, when, where and how of care delivery."
A financial planner will help determine a figure based on the severity of your child's disability. This evaluation will need to be reassessed as part of scheduled financial checkups.
Parents sometimes assume a family member will be the caregiver after they're gone. If a special-needs child needs care into adulthood, that may not be realistic. Hard choices will have to be made about who will provide the best care.
"Typically," Larsen said, "that's an institutional caregiver, and how do we pay for that?"
The parents, along with their adviser, should determine those answers in an in-depth and comprehensive plan, Larsen said.
When parents invest time and effort in planning, they find it has lasting value.
"The most common thing I hear from families comes at the end of the process, when people say 'I'm so glad we finally did this -- we have peace of mind,'" Wyatt said. "They know they've accomplished something that will live beyond them."
(Reach Niesha Lofing at nlofing(at)sacbee.com.)
(Distributed by Scripps Howard News Service, http://www.scrippsnews.com.)
http://www.therepublic.com/view/story/specialneeds-cost053011/specialneeds-cost053011/
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