15 ways families with a special needs child can save money

Advice for Parents with Special Needs Babies

If you have a child or other family member with special needs or a disability, then you know it can be expensive! Here are some tips which can save you a lot of money. If you know other tips which are not included here, please let us know so that we can share it with our readers.

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  1. Apply for all the state and federal benefits programs you can. At the minimum this should include Medicaid, Social Security, and if ineligible for those, the Medicaid Buy-In program. Medicaid also has a program that may help you pay back medical bills for the previous months even if you don’t qualify for traditional Medicaid. Ask to speak to the social worker at your loved one’s doctors’ office and find out what else you can apply for. There are some programs that allow you to “spend down” to meet their income cut-off. That means if you make more than their income limit but have high medical bills, you can subtract those from your income total.
  2. Enroll your child or loved one in Respite Care. This is a service that many families qualify for in which trained healthcare providers will care for your loved ones either in the home or at a sort of “daycare” so you can get a break. Many programs are free or payment is on a sliding scale based on your income so you pay an affordable rate. There are programs that provide care for children and adults. You might also qualify for home nursing care. Check with your insurance company on this.
  3. Ask social workers who work with your child or loved one (through medical facilities, community resource groups or therapy) for donated items you might need. They may have donated medical equipment such as new, un-opened medical supplies that someone no longer needed; unexpired medical foods; samples; and gear such as walkers, gaiters, standers, wheelchairs, food pumps and so on. If they don’t have it, they might be able to direct you to where you can find them. You can also search on Craig’s List for items people are ready to pass on or sell.
  4. Take advantage of used items when possible. Garage sales, Craigs’ List, Ebay, flea markets and friends and family places and great places to pick up learning toys, manipulatives, medical equipment and other items for a steal. Just make sure it’s easily cleanable or it’s probably not worth it.
  5. It is expensive to have a loved one with special needs and sometimes people lose federal or state benefits once they turn 18. Start planning now by using a budget to help you manage your money overall.
  6. Be sure to consult a lawyer, financial planner or appropriate resources for money management. Putting the name of a person with special needs on a bank account may preclude them from receiving Social Security as an adult since the bank account will be counted as their assets. The same is true for money left in a trust or will. Some communities offer free classes on financial planning for special needs so it’s worth researching before paying for a class.
  7. Question if a medical procedure is necessary or get a second opinion. When our daughter was having surgery, we had a doctor say he wanted to flood our daughter’s lungs with fluid and then suck it out and test the fluid. We said we weren’t comfortable with the test and asked if it was truly necessary and two other docs jumped in and said they didn’t believe the test was necessary and could actually be dangerous for her. The first doc admitted he was only going to do it because she’d already be sedated but it wasn’t really necessary. Personally I trust doctors in general and will go with what they want, but it doesn’t hurt to ask.
  8. Be sure your doctors are in your insurance company’s preferred network if your insurance has preferred providers. You will pay much more if the provider is out of network. Find out which labs are preferred providers, and insist that your doctors’ office send tests to a preferred provider lab. If they refuse, you can always get the test ordered through someone who will work with you, and it will save you a lot of money in the long run!
  9. Call and check with insurance first to make sure they will cover a procedure. We are still paying for expensive genetic testing that insurance refused to cover! Many insurance companies refuse to pay for genetic testing.
  10. If your insurance will not cover a test or procedure, talk to the medical facility that will provide the procedure. Often they will agree to give you a maximum payment amount. This guarantees that you will pay no more than the price they quote you, even if insurance covers nothing. Get the maximum payment amount in writing and if they try to make you pay more than that, argue with them until they stick to their original agreement.
  11. Put your insurance company on speed dial. Call them frequently and check your explanation of benefits to be sure they are paying what they should be and to keep tabs on things such as how much of your deductible you’ve met, how much of your max out of pocket expense you’ve met, how many therapy visits you have remaining, and so on.
  12. Ask insurance to cover “medical food” items such as vitamins, dietary supplements, food or liquid thickeners, high-calorie formulas for weight gain, weight-loss supplements, baby formula (if a baby cannot breastfeed), breast pumping supplies and breast pump or others.
  13. Keep your medical bills very organized and if you don’t agree with a bill, fight it. If you need help dealing with the billing people, speak to the patient liaison. Most doctors and all hospitals have one. They can intercede on your behalf and help you find who you need to speak with to solve a problem. Read our article on How to save on medical bills for more billing tips!
  14. You may be able to deduct medical bills not covered by insurance from your taxes if they total more than 10 percent of your adjusted gross income. Read the tax rules to see what you can deduct each year at the IRS website but some examples of deductible items besides doctor’s bills include a mileage rate for driving to and from doctor’s appointments, parking fees, hotel costs if you had to stay close to a hospital for an extended period, cost for medical supplies, co-pays for therapy, cost of insurance payments and so on.
  15. Some insurance companies offer case managers who can help you access benefits; help you find resources; act as intermediaries between insurance and hospitals and more.

Please comment below and share your experience with us, or give us a feedback about this article. If you think some tips are not included here, please let us know so that we could share them with the rest.