“We work too hard to be this poor.” Is what one mother of an autistic child said regarding their financial situation that is continuing to decline in this bad economy. Autism is a very expensive diagnosis, with little available from insurance, because there are very few therapies that have been proven to work across the board. Since Autism affects each child differently, so does the treatment, what will work for one child may do nothing for another.
The average cost of providing behavior therapy is about 50,000 a year, 25,000 if you have insurance. This is just one therapy, there is also occupational therapy, physcial therapy and other options with their own costs. Additional costs of doctor’s visits, therapy tools,other therapy, and nutritional needs add another 10,000-15,000 forcing families in constant debt.
The average additional cost not including therapy, for those who have this mostly covered or get by on less is 6200. Studies have shown that over-all the average debt carried by a family with one autistic child is 67,000 and is 72,000 for a lower-functioning child.
The lifetime cost to care for a child with autism 3.2 million dollars and one in every 110 8-year old children is diagnosed with autism. This is up from 1 and 150 three years ago.
The sad part is there is limited help for families out there, social security benefits are not always given, and there are no other means of getting respite. Families have to count on their own families and friends to keep them from falling further down the hole. There are services available through the school districts which will pay for some of the therapy, as well as early intervention services from IDEA (Individual’s with Disabilities Act) Assistance will vary state to state. This can take some of the burden away, and for lower-income families it is the only method of therapy they will ever receive. Schools are required to shoulder most of the therapeutic burden, and they do not provide what is best, only what is appropriate for a child to learn in school with other children that are also disabled. Basically, they can educated a child enough to be able to function within their own setting, but not enough for the child to function in all settings without additional help.
Parents are often also hit with more than just the increase in bills due to therapy, food, medicine, doctor’s bills and tools. But also in the fact one parent gives up their job due to the need to be home with the child for the therapists and for the fact autism is a battle with time. Since children with autism have poor social and bonding skills, there is an increased need to have more time with the child from both parents, but at least one. Some families do wind up losing both jobs, and selling their homes and moving back in with their parents. Or in the case of more affluent families that can afford to do so, downsizing their home or moving into an apartment.
Parents of children on the spectrum are also often exhausted and battling depression because of the long nights and not getting sleep because the child is not sleeping, the additional labor that is involved with caring for an autistic child who does not understand things at the appropriate age level, the additional cleaning and repair of household items and toys. Depression can easily take over because of the burden of debt, and isolation. Parents of children with autism are limited to the activities they can do as a family. With therapy this area can improve, but all families start at square one when meltdowns will override the child’s desire to have fun.
More needs to be done for families, allowing a greater amount of families to be covered by social security and food stamps. Communities and families need to get behind these children so they do not wind up homeless and hungry. Many parents will tell you though that debt is just a number because even if the price tag is 60,000 a year or 3.2 million dollars getting their child back, and getting them able to function and enjoy life is priceless.
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