OTHER DIRECT SUPPORT NEEDS

Help Elliott Optimize his Limited Vision – NOW

The needs of the family to effectively support Elliott are far greater than either insurance or his family can provide. We have prepared a listing  of widely diverse and extensive needs, but THE CURRENT PRIORITY IS TO RAISE $2,000 BY THE END OF MAY to support a specialized medical consultation for Elliott’s profound vision problems with a renowned national expert in Pittsburgh. The funds are to cover the cost of the trip and the medical consultation.   DONATE NOW   for Vision Consultation

 

 

 

 

 

 

 

For a discussion of Grandpa’s vision therapy work with Elliott, click here to see Caretakers Corner.

 

Click here for background on Cortical Vision Impairment, one of the many challenge Elliott’s faces, but one for which new therapies are available to assist in optimizing development of his vision.

As of May 9, 2014

Other Needs for Direct Support for Elliott’s Care

As if the overwhelming emotional challenge of raising and caring for a profoundly disabled child weren’t enough, the financial burden is virtually incalculable.

 

One might think a decent insurance policy covers a lot, but it is hard to believe the breadth and scope of uncovered expenses. A primary example is that Gabi had no choice but to keep working – and full time – in order to maintain their insurance coverage. And so John put his teaching career on hold and is home caring for Elliott full time. No coverage for lost income. And Grandma is an active caregiver working with Elliott almost every day and providing the only relief allowing Gabi and John to get reliable support and some real breaks.

 

Basically, there’s no coverage for the skilled nursing care needed to provide any support for the around-the-clock specialized care Elliott requires. And beyond the need for skilled care, they desperately need an administrative aid to help stay on top of the continual flow of bills, claims, appointments, recordkeeping etc. That alone is close to a full time job!!

 

Then there’s the bizarre insurance rule that they don’t cover anything for safety – it has to be therapeutic. So the expensive adaptive car seat is not covered so until we can identify and obtain an appropriately adaptive car seat. Elliott continues to get around in an infant seat, which provides essential head and trunk support. Similarly, the specialized bath chair he needs is not covered by insurance.

 

Gabi and John are clearly doing an incredible job caring for Elliott and trying to make ends meet but the financial burden is impossible to maintain – even with all the support their families are providing. A number of family and friends have expressed an interest in supporting them – and while it is difficult for them to accept pure gifts – they have agreed to at least be open about what kinds of support is needed and how they could apply funds to improving Elliott’s care – and reducing their overpowering burden.

 

Following is a listing of the areas where donations would make a definite impact and really help them – and Elliott - out. We’ve outlined the diverse needs in list form and the total amounts required. Clearly we welcome any increment of support you wish to provide. Please don’t get intimidated by the huge amounts – clearly every donation – no matter how small – can contribute to relieving the burden and allowing some expenditures they couldn’t otherwise afford.

Expert Consultations

Consultations to be scheduled:

Pittsburgh/vision specialist – estimated

$2,000

Dayton/infantile spasm specialist

to be confirmed

Other specialist to be decided after results from current genetic testing

to be confirmed

Denver/specialized seizure treatment

to be confirmed

Seattle/genetic specialist

to be confirmed

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Consultations completed:

Baltimore/development specialists/ketogenic diet – completed two visits

$1,200

Boston/Children's Neurology – completed one visit

$500

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Additional Support:

Adaptive Bathing Chair

PURCHASED WITH THE HELP OF FRIENDS LIKE YOU

$1,000

iPad and Specialized Programs for Vision Training

$1,500

Additional Equipment

Additional equipment not covered by insurance such as neck and ankle braces

Van

The Coneckers will need to purchase a "new" vehicle to accommodate necessary equipment for Elliott on a daily basis

Genetic Testing

Many of the costs associated with genetic testing are not covered by insurance

Administrative Aide

Medical billing assistant to help with the deluge of bills and payments

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