I have a child with an autism spectrum disorder. We have higher than average health care costs because my son has speech therapy and occupational therapy. We also have to buy special products and not be as frugal as we like in order to accommodate his disorder. For example, the only milk he will drink is store-bought chocolate milk.
Could you cover ways to keep costs down and suggest agencies that may help us with these additional costs? One way that I have helped with costs is getting my employer to increase the maximum in our medical Flexible Spending Account. This way, we get tax savings for our medical care.
I read your post with interest. You are correct that there are specialty items needed with a child with Autism. As a Speech-Language Pathologist, I see children who present with this issue often. I was quite interested with your child's brand-specific need for store-bought chocolate milk. I also understand your request to locate services for your child and get assistance in managing the costs as well.
Here are a few things that come to mind. If your child is under three years of age and you live in the US, you may be eligible for services from the Early Intervention (E.I.) program through your school district. Your physician can help you access these services. Occupationals and Speech Language Pathologists can address his sensory issues (i.e. only store-bought chocolate milk) and help you with strategies to increase tolerance for new and different things as well as increase the child's functional communication and activities of daily living. Also, depending upon where you are in the country, the E. I. program may be free of charge, or charges may be based upon a sliding scale.
If your child is older than three years, again the school district can provide services in OT and SLP to help, but please know that they are required to follow the federal guidelines as far as qualification. Traditionally, the child needs to score near or below the 7% level to qualify. If your child does not qualify, attempt to find an outpatient rehabilitation clinic associated with a children's hospital or with a large hospital system. If your insurance will not qualify you for services, you can ask to fill out forms for charitable care. Most hospital systems have these programs in place. You can also access services for a reduced cost through the Easter Seals program and Scottish Rites Temples in your area. You can also ask United Way or a rehabilitation provider if there is a lending library for equipment. Most metropolitan areas do have them. You can check equipment out for a period of time, usually without any fees.
Consider talking with a Social Worker that your physician may recommend. They have many, many programs that they may be in a position to assist you with.
It may not sound like it, but in the long run, having these interventions will help decrease costs of the child's sensory issues and communication issues.
When my son was receiving occupational therapy, there were many items that were used by the therapist that I was willing to purchase. She began telling me about low-cost alternatives to many of the items. Once I began looking around, I found many things (at stores such as Target) that were similar to what they used, but for about 75% less. She ended up giving us some of the smaller things that I couldn't find comparable items for.
My son also only liked chocolate milk. It turns out his body couldn't process liquid milk properly (he was only drinking the chocolate milk because he liked the taste of chocolate). I switched him to vanilla soy milk, which he uses for his cereal (he still prefers not to drink any kind of milk).
As for cutting other costs, I know that our tighter food budget had some surprising results. At the time, we needed to drastically cut our food bill, so I began cooking about 95% of our food from scratch. Within a month, about 50 to 60% of our son's behavioral issues disappeared. That was 7 years ago and I've continued to cook from scratch because of the benefits to my son.
Carri in California
You didn't say how old your son was but you should be able to receive most, if not all, speech and occupational therapy from either Birth to Three services or from your local school district if your child is between 3 and 21. I am an occupational therapist and none of my students with autism have to pay for services. You may have to pay if you are receiving services from a specialized clinic. Some states also have programs such as the Wisconsin Early Autism project, which helps with providing intervention in your home from a variety of specially trained individuals. And this does not cost the family.
Contact your local Social Services agencies to see if you qualify for any programs. I know some of the families I work with qualify for Family Support Services that can help to buy specialized toys/equipment, pay respite caregivers, help pay for special diets, etc.
I would also talk to your therapists (OT and ST) about how to change or introduce different foods into your child's diet. For example, I had a student who would only eat French fries from McDonalds when they were in the McDonalds little red containers. We started by mixing in one or two fries that were like McDonalds but not from McDonalds and slowly increased the amount. We also worked on having him watch us pour the fries out on to a plate and eat them from the plate. It took a while, but we worked up to eating any that had a little salt on them. This is just one example of how to slowly change a food item. We did the same thing to switch the child from only drinking strawberry milk to drinking white milk by mixing them a little at a time. We even at one point used red food coloring to keep the color the same shade.
The resources available will vary greatly from community to community. I'm lucky to live in a state, county and city where folks with developmental disabilities are able to find support. However, the waiting list is terrible. We have a great support system through the university and even an agency that has a "try before you buy" equipment loaner program so folks can live with a piece of adaptive equipment before laying out the money. There is also the chance for families to access special government funds to purchase adaptive equipment or access respite care and therapies. It's worth a call to the school district and county health and human services office.
In the end, however, a family with great medical needs may need to squeeze other parts of the budget. Look for a food savings program like SHARE that offer monthly groceries at a savings. Don't be shy about accessing food pantries if needed. It frees up resources to help your child, and that's worth the effort. Look, too, for groups like Freecycle that connect members of a geographic community to pass along usable items for others to use. I've freecycled clothes, furniture, household items, garden plants, canned goods and so much more!
Martha of Madison, WI
Talk to your son's occupational therapist and speech therapist and ask what commonly available toys and household items could aid in his development (building blocks, puppets, nesting measuring cups, etc.). Keep a look out for these things at second-hand shops and rummage sales. A book that may be useful is The Out-of-Sync Child Has Fun . It suggests many fun activities that aid in specific therapies and utilize objects found around the house.
When purchasing clothing for your son, remember second-hand clothing has a distinct advantage for children with tactile sensory issues. Because it has already been washed many times, it has softened enough for children to find it more comfortable.
If babysitting or respite care is an issue, ask at a local college if students from the education or human services departments would be interested in helping you. If you are not living close to a college, there may be a high school student in your area who is considering a career in special education.
Above all, find out if there are support groups available in your area. Connecting with other parents who are in a similar situation is often quite helpful.
There's a great online community called Special Child Exchange. People from all over the country who are parenting children with special needs share tips and give away or sell items relating to their children's disorders. Check it out at http://groups.yahoo.com/group/SpecialChildExchange/. There are items ranging from diapers to Pediasure to wheelchairs. This mom may find some helpful hints there or even some items she needs for her son's therapy at a drastically reduced cost.
If your child has a diagnosable neurological impairment, you can deduct the cost of private special education under "medical expenses" on your Schedule A. Although I have adopted several special needs children, my out-of-pocket medical expenses never got me over that 7.5% hump. But now that my youngest daughter is in a good (and pricey) high school for Learning Disabled and ADHD kids, I meet that criteria with ease.
As a parent of a son diagnosed with Autism Spectrum Disorder, and a resident of Pennsylvania, I have to say that the best advice we ever received came from our son's Neurologist. The first thing he had us do, after diagnosing our son, was file for Medical Assistance under the Disabled Child Loophole. We did have to list income, but it did not play a role in his eligibility, only his diagnosis played a role. It has been a real blessing. My husband's insurance is the primary carrier and our son's medical assistance card is the secondary. His MA card covers any co-pays or fees not covered by our HMO.
Also, our son has need of behavioral wrap-around services, and in PA, the only way to have those services is to have an MA card. These services are so prohibitively expensive that they couldn't be paid for otherwise. I do not know how this works in other states and I have to say that PA is in the process of changing their system. They are adopting a sliding-scale premium, which is based on the income of the custodial parents and the size of the family. They are waiting for approval from the Federal Government. But having done some figures based on the premium information that we received, the modest premium that we would have to pay monthly is a drop in the bucket compared to what we would have to pay without our son's card. I encourage Michelle to look at Medical Assistance in her state.
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