Special families

What to do when a child has special needs

STEPHANIE N. HENSCHEL
Staff Writer

Starting a family is an exciting, though somewhat frightening, adventure in the cycle of life. But there are times when the fear takes precedence over the excitement.

Having a child with special needs can be daunting. But by being prepared and knowledgeable about a child's disability, parents can wade through the fear.

There are several different ways a parent can find out their child has a disability. Birth defects, or congenital defects, let parents know almost as soon as the child is born. But children can also be affected by late-onset disabilities when an accident or illness causes a disability.

Depending on how a parent learns about the disability, and what the disability is, the reaction can be very different, according to Becca Hornstein, executive director of The Council for Jews with Special Needs.

"The prognosis can vary and that affects how the family finds out about it," she says.

Once a disability is discovered, it is essential to find the right and necessary resources.

Hornstein said there are many resources available to parents of children with disabilities, besides the CJSN. She said the first call should be made to Raising Special Kids, a nonprofit agency that offers many services to parents and children.

"They're a clearinghouse for information," Hornstein says.

That agency provides information, resources and support to families of children with disabilities. Groups for parents, grandparents and even children are offered.

Hornstein recommends that parents immediately register their child with the Arizona Department of Economic Services, Division of Developmental Disabilities.

"Most parents are going to be desperate to find out as much as they can, not only to find out how (a disability) affects their child, but also the family," Hornstein says.

Even if a parent believes a child may be at risk, there are resources available for intervention.

"The most important thing with any child with a disability is immediate intervention," Hornstein says. With some disabilities, intervention can help work through the delays created by the disability.

But there are legal issues to consider as well.

"First of all, special needs planning is a complex problem that really requires someone with expertise in that area," says Bart Stevens, owner of Bart Stevens Special Planning. His company specializes in life planning for a family with children with disabilities.

Stevens said there are four major issues parents should address when they have a child with special needs: lifestyle, legal, government benefits and financial need.

As children with disabilities are living longer today than they ever have before, it is likely they will outlive their parents - usually the primary caregivers. In order for the child's future to be safeguarded, parents must do several things. First and foremost is a letter of intent.

According to Stevens, the letter of intent will outline what kind of care the child should receive and how - i.e., the lifestyle of the child. This can enable future caregivers the "how-to" of care for the disabled child. Stevens even recommends making a video showing exactly how care is provided, such as dressing, feeding and other daily rituals.

"For care providers, it makes it easier to understand," Stevens says, adding that it also makes the transition easier on the child.

Most parents create wills and other legal documents of that nature, but when dealing with a child with special needs, parents need to create a Special Needs Trust. There are many variations on this document, Stevens says, but the essential purpose is to "allow family and friends to leave assets to benefit a person with special needs."

The benefit of such a trust is that any assets accumulated are not considered "countable assets," Stevens says, so a person with special needs can continue to be eligible for government benefits.

Along with the trust, parents must chose a successor guardian and a trustee for the trust.

The guardian would be the designated person responsible for the daily life of the child with special needs. This is a role that must be petitioned for, according to Stevens, even if a person has been designated by the parents or primary caregiver.

The trustee would manage the trust and be responsible for investing and keeping track of the assets.

There are many government programs available for children with special needs, many that parents are not even aware of, Stevens says. As part of a special needs plan, parents and caregivers would be educated in what benefits a child is eligible for.

And lastly, Stevens says it is a good idea to consider a child's financial need. Parents should plan a budget that includes all known costs a child may need over his lifetime.

A complicated process, indeed, but one essential to the life of a child with special needs. Parents and caregivers need to remember they are not alone.

"If somebody where to call me, I'd literally walk them through this process step-by-step," Hornstein says. "No family should ever feel like they have to do this alone."

It is also to remember that, no matter how overwhelming, a child with disabilities is a blessing.

"I think it's important that families understand that these children have many abilities," Stevens says. "I think it's important to focus on that."

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