Welcome To Kaitlynn's Place

Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

Resources For Families With Special Needs Children

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If you are the parent of a special needs child and feel completely overwhelmed by the medical and fiscal issues, have no fear…you are not alone. Most parent’s with special needs children are not millionaires. We are low income and middle class folks that don’t really have spare money sitting around for things like a $30,000 muscle biopsy.

My personal situation was comfortable before Kaitlynn was born. I worked as an ADON for a nursing home and my husband was a maintenance supervisor for a prison. We were not rich by any means, but we were comfortable. We saved around $40,000 before getting pregnant, so that I could take a year off with our future baby. After Kaitlynn was born and her medical issues became apparent, I resigned from my job. It only took 6 months for her medical expenses to devour our savings. We not only now faced monthly bills that we obligated ourselves to when we had two incomes,  but a new steady stream of  medical bills and expenses to travel to all these doctors.

It was a humbling and life changing experience to say the least. I learned a frugal nature that I never would’ve thought existed within me; salvage stores, consignment shops, and discount stores became my new best friend. However, frugality was still not enough to stretch pennies into hundred dollar bills.

I swallowed my pride quickly when it came to the wellbeing of my child and getting her whatever she needed. I spent hours researching anyone and anything that would provide help. So, don’t give up on getting your child the help that they need because you hit a financial brick wall. There are many resources that specifically help families with special needs children. Here are six resources to get you started.

      Angel Flight

This private charter plane will transport ONE parent and handicapped or terminally ill child to doctor appointments, surgeries, etc for FREE. The plane is usually small and the trip is donated by the pilot or owner. There is a waiting list. So, if you need this service, it is best to apply as soon as you know the date you need the transportation.
      SSI Supplemental Security Income

 If your child has certain disabling conditions you may be eligible for SSI. This is a program through the Social Security office. It generally takes several months for approval, and you may get denied several times, but just keep applying. You may be eligible immediately (while approval is pending) if your child was born with certain diseases.  There is a specific list of these diseases at the SSI web site. Keep in mind that SSI approval is dependent upon income and assets. The specific allowed amounts of assets and income will differ per state. Generally, your vehicle, life insurance, and primary residence is not considered an asset. However, savings accounts, checking accounts, other property, etc are. When the child is approved for SSI, they are also automatically approved for Medicaid.
      CHIPS (Children's Health Insurance Program) and Disabled Child Living at Home Medicaid
 If you are not approved for SSI and/or Medicaid, then you may still be eligible for the “Disabled Child Living at Home” portion of Medicaid. This is a Medicaid program that DOES NOT consider income. This program only looks at the medical eligibility. The SCHIPS program does consider income as a factor, but the income cap is much higher than with Medicaid. So, both of these are viable options for middle class families stuck between not meeting income requirements for Medicaid, but not being able to afford private insurance.

      Shriners Hospitals For Children

 Shriners  will provide free care for children with certain medical conditions. These hospitals are run by the Shriners organization. You must be recommended or sponsored by a Shriners member. Contact your local chapter for an appointment with a member. It is not a difficult process. There are 22 different hospital locations. The Shriners will provide free transportation to and from medical appointment that are out of state These Hospitals are limited in the care they provide. Mostly, they specialize in orthopedic conditions, burns, cleft palate, & spinal cord injuries.

      Ronald McDonald House

 If you must travel afar to doctor appointments,  then check to see if there is a Ronald McDonald house in the area. You will have a private room here, but the bathrooms and central areas are shared. They have several locations. Again, this is one of those things you want to contact as soon as you know the date of your stay.
      First Steps

This is a program for developmentally delayed children. It is provided through the local health dept. The services that they offer depend greatly on the community you live in. Some offer physical therapy, occupational therapy, speech therapy, and special educational instructors…while others may offer different combinations of the above disciplines. It is a home based service and generally each needed discipline will see your child once a week. You may custom build your services based on what you want and what they have available. This program is for children birth through 3 yrs of age. The therapist will help you identify and find a resource to get any equipment you need for your child. Call your local Health Dept for more information.


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