August 2007
Dear Family and Friends,
We write to you on Takoda's behalf because he cannot communicate on his own about something very important to him: he needs wheelchair-accessible transportation. With every passing year as Takoda gets bigger and heavier, he gets out of the house less and less often. The van in the picture above died with a thrown rod on August 10th, 2007.
This very important need, to get out of the house and into the community, is not covered by his other sources of support. Until now we've managed to support or find funding for his medical care, which costs $60,000 to $75,000 per year. Unfortunately, the wheelchair ramp conversion for a van costs almost as much as the van itself ($24,255).
We have at least 7-8 more years of being his primary transportation providers and expect this to be the only time we have to ask for help. We wouldn't reach out like this if it wasn't such a big quality of life issue for Takoda. Here's how we've done it to date.
The East Tennessee Technology Access Center has graciously agreed to collect tax-deductible donations toward the cost of Takoda's van conversion. ETTAC is a non-profit 501(c)(3) agency serving the needs of disabled people in East Tennessee. They've agreed to do this for Takoda because they've known him since he was 3 years old. ETTAC adapted Christmas toys for him and provided free summer camps and assistive technology support until we moved to Georgia.
Donations made payable to ETTAC for the Takoda Law Ramp Fund will only go toward the cost of an in-floor ramp conversion, not the van itself (which is our responsibility). Donors will receive written acknowledgement from ETTAC for tax purposes. Please note that donations cannot be made to Takoda directly. If he receives or holds more than $2,000 in assets in his name, he will lose his Medicaid coverage.
Please share this letter with your families and friends. We'd be happy to provide more information about Takoda and this project, just ask. A little bit of help from lots of people could make a BIG difference in his daily life! Thank you for listening,
R&R Mobility
Conyers, GA
Update -- September 1. We are almost through the credit hurdles and have
narrowed our choices down to just a couple vans. Thank you so very much for
the donations thus far. We are incredibly grateful.
After spending years researching our options, the Braun in-floor ramp conversion would best fit Takoda's needs. It requires lowering the floor of the van among other things. All other types of van conversions were researched and rejected for reasons of cost, durability and/or suitability for Takoda's needs. We gathered information from car dealerships, Koda's social worker and service coordinator, social service agencies (United Cerebral Palsy, among others), Internet groups (GA-Childrens Network, CP-Network, others) and have talked to many other wheelchair families like ours in countless parking lots and parking garages throughout the years.
Braun in-floor wheelchair ramp $24,255
VMI in-floor ramp $25,006
Funding
Private donations as of August 13, 2007 $3400
BlueCross/BlueShield CareFirst PPO – not a covered service $0
Georgia Medicaid – not a covered service $0
Georgia's Medicaid Waiver Program: $0
“Vehicle modifications” has been listed as an unmet need on Takoda's service plan for 5 years. Takoda's social worker and our regional community service board say these funds are extremely hard to access and not awarded to people whose non-disabled, non-elderly parents are still living. We don't know anyone who has been able to get this lifetime maximum $3,120 for vehicle modifications.
Fragile Kids Foundation -- http://www.fragilekids.org. $0
Application is pending. However, known recipients are single parents, disabled parents, people on welfare or Social Security Disability Income (not us).
FODAC – Friends of Disabled Adults and Children – www.fodac.org. $0
Their ReMount program serves only the indigent and adult disabled who need transportation to their existing jobs. Dr. Bob McKeon spent an hour on the phone in fall 2005 discussing various van options with Michelle and answering questions. Richard had a discussion in person with their Director of Operations in December 2006.
Home equity $0
Our home equity has already been used, to pay off medical debts from 5 years ago in Tennessee where Koda did not qualify for Medicaid as backup health insurance.
After-Delivery Rebates/Refunds:
Manufacturer's rebate $1000
Remainder to be funded: $19,855
Justification
Koda is getting too big to handle physically. So is his wheelchair. A van with a lowered floor and ramp will accommodate his adult size and wheelchair. Koda weighs 70 lbs, is 5 feet tall and still growing. He cannot sit independently and has trouble controlling his head. If he can ride in his wheelchair, he'll be safely positioned while in the van. His current wheelchair weighs 200 pounds and must be partially disassembled to fit into our current van. In another year or two, he'll outgrow his existing wheelchair and get a new one in a larger, adult size.
Koda needs to be able to talk (use his Dynavox) while in the car. Because of a lack of vision and fine motor control, he uses auditory scanning to access the Dynavox with a head switch. It's mounted on his wheelchair headrest so if he's not in his chair, he can't talk. He's been essentially gagged while riding in the family van for 7 years now, since he first started using a Dynavox.
Koda needs to get out of his house more often, to get to medical appointments, after-school activities, and to visit family and friends.
Current Vehicles: We keep our cars as long as possible, 17 and 7 years old:
Toyota Sienna van – bought new in 2000, died with a thrown rod at 187,000 miles on August 10, 2007.
Toyota pickup -- bought new in 1990, $3500 in lifetime repairs, still gets Richard to work every day.