Saturday, September 19, 2009

WHO helps us and WHY?

Having a special needs child can be financially devastating. We have 2 special needs children. There are many programs available for special needs children. However, many only apply to low income families. Finding programs that apply to families regardless of income do exist. They're just not as easy to find. We live in Wichita, KS. Programs vary by State and even by County in many cases. Here are some of the programs that help us and how we qualify:

TA (Technology Assisted) Waiver - Medicaid Card
This waiver program waives income and gives us nursing in our home to help care for Kinnick and Carver. Because Kinnick and Carver are technology assisted, they waive our income and allow them to be on the program. Their technology consists of continuous O2 (more then 8hr/day), G-tube feeds, suctioning if needed, and a variety of other items. This program is funded by Medicaid. Therefore, it also helps by giving Kinnick and Carver a Medicaid card. This is considered a disability qualification for the Medicaid card. Most private insurances do not cover nursing in the home. So, this can be a huge help. We have private insurance, but having Medicaid as a back-up has been a huge help. In addition to the nursing and Medicaid card, we also receive a Case Manager. This Case Manager assists me with all of my Medical questions/needs. She will attend appointments with me, gather medical records, does all of my paperwork to qualify me for nursing every 6 months, does "Can be Healthy" check-ups (well care check-ups), and many, many more things. She's at my fingertips for any questions I may have as they relate to Kinnick and Carver's medical needs.

Also, by having the Medicaid card, I can get travel expenses like food, lodging, and mileage reimbursed if I take Kinnick and Carver out of State for medical reasons. Considering how often we go to MI for eye surgery, this has saved us thousands of dollars.

MRDD (Mentally Retarded or Developmentally Delayed) Waiver
This is another waiver program that waives income and allows Kinnick and Carver to be on the program. This program will provide a Medicaid Card to a child (age 5 and over) based on being Mentally Retarded or Developmentally Delayed. Kinnick and Carver are not 5, so they do not qualify for a Medicaid card through this program, yet. However, there are other things that this program offers to children prior to age 5. There is special funding available every year that helps pay for items that are not covered by medical insurance. Last year, the program gave Kinnick and Carver over $4,000/per child toward the purchase of NEW equipment - Kaye Products Gait Trainer for Kinnick, Tumble forms Stander for Carver, and Rifton seats for both Kinnick and Carver. This year, they have $2,500/per child available for these types of items. They also pay for such things as Special formulas and diapers. Our formula is paid for via Medicaid because Kinnick and Carver have G-tubes, but for some, insurance doesn't pay for formula and it can be very expensive. Kinnick and Carver have both been on formula that costs $800/mth per child. At one time, I had to pay that out of pocket. Many are paying out of pocket for these things. The program pays for diapers if the child is at an age that a typically developing child would no longer be in diapers. In addition, this program provides me with a Case Manager. The Case Manager is very helpful in finding funding any time we have a special need. Kinnick and Carver qualify for this program due to their Developmental Delays.

Kansas Safe Kids
Rainbows United put us in contact with Kansas Safe Kids who provided car seats for Kinnick and Carver. Kansas Safe Kids and Rainbows United (together) custom fit special needs children in appropriate car seats at no cost to the family. They do this regardless of income. Kinnick and Carver were both given NEW Britax Boulevard car seats. These retail for $310.00 if purchased from a store. They qualified based on their disabilities and their need for special seating.

Rainbows United
Rainbows United provides early intervention to developmentally delayed children. Kinnick and Carver receive OT, PT, VT, AVT, SLP, and an early education teacher at no cost to our family. They will receive these services until they turn 3. At that time, the public school system will pick up these services. Kinnick and Carver qualify for this program based on being developmentally delayed.

Deaf/Blind Funding
Carver qualifies for Deaf/Blind funding due to being Deaf and Blind. You don't have to be totally Deaf and/or totally Blind to qualify. However, Carver qualifies because he is legally Blind and Deaf. This program provides funding for educational toys and equipment to help Carver's development. Our Vision teacher with Rainbows United completed the paperwork for us to qualify Carver. This is another program that does not take income into consideration when approving a child for the program. This program will follow Carver for many years.

So, there are programs out there that will help families that aren't considered low income. Without these programs, the expenses incurred for these items would easily devastate a family whether they are low income or not. I'm sharing this information to help others that might be looking for help.

As always, if you have any questions, my email address is on the left hand side of the screen.


Jennifer said...

Hey Shanon, I tired our NC mr/dd program and do you know what they told me? That my son doesn't qualify because he doesn't need institutionalized since I am a stay at home mom! I am so aggravated and don't know how to navigate the system to get what we need. Our therapists have told us that there are kids less involved than Liam and they get the services. I am just at a loss. Thanks for posting what you receive. I am going to check into the stuff for the blind and see if there is anything there for us. Hugs, Jen

TMI Tara said...

This is amazing info. Do you mind if I share it on the kidz blog? I'll also share some services that we use as well.

Anonymous said...

Thank you for sharing this information. We are just starting to navigate the road for funding and can use all the help we can get. We are also in Kansas!

Anonymous said...

Shanon! This is awesome info that could help a lot of people! Thank you for sharing!