“It’s a boy!”
While these three words can be a source of one’s greatest happiness in life, it can also be bittersweet for those who give birth to children with special needs, when the parents think about the emotional challenges they and their children will face throughout their lives.
The spectrum of special-needs children ranges from mental to physical to psychological and sometimes all three. A 2008 study by the United States Department of Health and Human Services estimates that 14 percent of children in this country fit into this category, and about 20 percent of families have at least one special-needs child. The definition of a special-needs child can range from one who is diagnosed with a mild learning disability to one who has a life-threatening condition, such as cystic fibrosis. This article will focus on the more severe categories.
Aside from the emotional toll it takes on these families, the financial strain such a diagnosis puts on the family is often overlooked. Goldie S., a mother of a special-needs child, says that the list of added expenses seems endless. Tuition, for instance, costs a great deal more at special-needs schools than at mainstream institutions. Although the Individuals with Disabilities Education Act requires that special-needs children be provided by the local school district with a “free and appropriate education (FAPE),” the provisions that are offered to parents often fail to meet their child’s needs. This compels parents to enroll their child in a private school, or sometimes fight to move their child to a school in another district. This is what happened to Goldie S., whose district was unwilling to transfer her child. While she fought successfully to have the child moved, she had to pay significant attorney fees in the process.
Similarly, children are often entitled to various therapies, such as physical, occupational, and speech. Sometimes, though, the district evaluates a child and denies the child these services. Parents who feel that their child needs extra help are then forced to pay the therapists out of their own pockets.
Sending special-needs children away for the summer is another great expense. A six-week stay in one upstate New York camp can cost about $12,000, which is three times more than the average sleep-away camp. This is due to the one-on-one care that is often required, as well as the additional medical staff.
Additionally, often these children require expensive equipment and medications. While the family’s medical insurance may cover some costs, parents often find that much of what their child needs is not covered by their plan, and that they need to fight their insurance company to pay what they feel they are due.
Beyond this, some of the extra expenses that are often perceived to be insignificant are the ones that can make a family’s financial situation unbearable. For example, special-needs children require more frequent doctor visits than most children. This means that one or both parents will frequently end up missing work, with a possible impact on their pay, in order to take their child to the hospital and medical offices. Furthermore, if these visits are far from one’s home, out-of-pocket transportation costs can also quickly add up, between gas, tolls, and parking.
In addition, they may require many specialists in many fields. If the child has an abundance of medical issues, it is hard to find the right fit with these specialists and often parents have to go “out of network” with their insurance companies in order to use these doctors. The costs of out of network co-pays can become significant.
Parents of wheelchair-bound children will also incur significant added costs. The wheelchairs cost several thousand dollars apiece, and there is often the need to install custom-built ramps in and around the home to make it wheelchair-accessible. A specialized van with a powered wheelchair ramp or lift installed costs about twice as much as a standard one.
Even mobile special-needs children can generate significant additional expenses. If, for instance, the doctor recommends specialized exercise equipment, the parents find that the cost can add up quickly.
Goldie S. points out that food can be a major expense when a child is placed on a special diet. One who is lactose intolerant will need to drink other types of milk, which is more expensive than cow’s milk. For children on gluten-free diets, the cost for many food staples, including bread, cake and pasta and products, run typically at about double the price of the common wheat-based varieties.
Special-needs children typically wear out their clothing faster, so their parents must update their wardrobes more often than for most children. In addition, some children with special needs continue to wear diapers long past their toddler years. While disposable diapers, even for infants, are not cheap, the ones for older children are not as readily available, and are often much more expensive, with the difference adding up to hundreds if not thousands of dollars per year.
Sometimes the expenses are intangible. For instance, a family whose eldest child is 15 years old can often rely on the teenager to baby sit the younger siblings at no charge if the parents need to leave the home on short notice. Not only is a special-needs child often incapable of babysitting for his younger siblings, the child often needs extra supervision himself, incurring yet another extra expense.
While the world has become increasingly sensitive to the plight of special-needs children, offering services that allow these children to live their lives to the fullest and realize their potential, the cost of raising them can be astronomical. While we may not be in a position to help such a family financially, our awareness of these extra costs will help to sensitize us to the full scope of the challenge they face.
Barry Katz is a college administrator and adjunct professor who lives in Brooklyn, NY with his wife and three children.
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