What is the Kinera Foundation Relief Fund?
As you know, we received that important letter from the IRS, determining Kinera Foundation a 501(c)(3) Public Charity, last week. I am still riding on that high!! This is so important to our Foundation because it will allow us to accept donations, or in IRS Terms "bequests, devises, transfers, or gifts", all tax deductible.
In celebration we are hosting our very first fundraiser, The Kinera Foundation Inaugural Virtual 5K. All proceeds from this event will benefit the Kinera Foundation Relief Fund.I wanted to take a moment to explain why the Relief Fund is so important. When C was diagnosed, it took what seemed like an eternity to #1 understand how to go about seeking services for him, and #2 get him in for an appointment. Having a child with special needs changes the way providers bill insurance, and what may not have been a covered cost pre-diagnosis now is, BUT you have to figure that out, through a lot of trial and error and many denials from insurance. Then once you have the insurance thing figured out, you have to wait for an appointment to open up. Many of the specialists we were referred to, had 6-18 month wait lists. AND, that is only if your child has a diagnosis with a billable code, that any of this even applies. I have met more families than are on my two hands, who don't have a primary diagnosis that qualifies them for Habilitative (Speech, Occupational, or Applied Behavior Analysis Therapies) and other services/ treatments, and therefore they must pay out of pocket.
The year that C was diagnosed, our family spent close to $15,000 out of pocket in medical expenses. We pay for our health insurance out of pocket because Kell is self-employed. Our health insurance has a high deductible, so when I would get approval from the provider and our insurance that a service was covered, I would not pay for the appointment at the time of service. I knew that we had the deductible, and would request to make a payment up front, to reduce the cost of the bill, but was many times denied because of the way the provider's billing system worked. 30 days later we would receive bills for $1200, $1600, $750, etc. and they would be due in 30 days. Seeing the bills pile up and trying to figure out how we would pay was overwhelming. In years prior, our deductible was spread out over the year. These bills all came due within a matter of 60 days. Very few families can financially make this work.
When we started our strategic planning for Kinera Foundation, this was an area I wanted to address. They say that you really can't financially plan for a child - you just make it work, but it becomes more difficult to "just make it work", when that child has a significant health care need. I had a mother of a child without a billable primary diagnosis tell me that she paid $13,000 out of pocket for genetic testing to be done, in hopes that they could determine a better diagnosis for her daughter. ONE TEST - $13,000!!
The Relief Fund was established to help families under financial stress - I can't name a single family, regardless of income, who has a child with a special need, and does not stress about financial stability. In addition, when you are putting this kind of money out to help your child with a special need, discretionary funds fall short. What about the siblings? I have heard stories of parents having to choose therapy over recreational activities for their typically developing child. It is a terrible position to be in - we have been there. The look of disappointment and resentment leaves a heavy cloud of guilt on your conscience.
There is an application process for the Relief Fund, we do not just hand money out to anyone requesting it. In fact, I am very proud of the application process. We release the grant quarterly, and the funding per quarter is based on the funds raised in the previous quarter. Funds are paid directly to the vendor or service provider, to ensure the money is being spent for which it was allocated. We have a committee of 3 fabulous community members who report to the Committee Chair, a member of the Kinera Foundation Board of Directors. The Relief Fund Committee has no ties to the Board of Directors, or the Special Needs Community, and therefore is a non-partial entity.
Applicants can apply for the grant to cover many services, including:
Speech Therapy - Costs not covered by Insurance
Occupational Therapy - Costs not covered by Insurance
ABA - Costs not covered by Insurance
Hippotherapy - Costs not covered by Insurance
Therapeutic Riding
Advocacy
Medical Devices - Wheelchairs, ramps, braces,etc. - Costs not covered by Insurance
Assistive Technology - Costs not covered by Insurance
Physical Therapy - Costs not covered by Insurance
Behavioral Consults
Camps
Social Activities
Emergency Funding, i.e. rent relief, electricity - With proof of financial hardship
Why am I giving you this information?
There are so many families struggling, so many who do not qualify for assistance, but need help. There is a gap that needs to be filled, and we want to help fill that gap. Families who's annual salaries are too great to qualify for help, but still struggle financially, families who don't have a diagnosis which covers the therapies and services their child desperately needs, families who have to choose treatment for one child over recreation for another... These families need help, and have very few resources to turn to.
By supporting Kinera Foundation, by running for a cause, or simply making a donation of your choosing, you are making a direct and positive impact on a family in your community. When we say ALL proceeds from the Kinera Foundation Inaugural Virtual 5K benefit the Relief Fund - we mean ALL. We chose a virtual race because the overhead and planning costs are minimal, allowing us to ensure maximum funding for our grant.
While it is Autism Awareness Month, I don't ask you to run to raise awareness. I ask you to run on behalf of the kid next door with ADHD, your cousin with Intellectual Disability, the child in your son's class with Epilepsy, and the little girl who doesn't have a diagnosis, but has significant delays and medical needs.
For more information on the Kinera Foundation Virtual 5K, or to register:www.kinera.org/virtual-5k.html
To Donate: www.kinera.org
To learn more about the Relief Fund and how you can help: Christy@Kinera.org
