Like the saying goes..."It is easier to give than to receive" and that saying can't be any truer than to my husband and I. It is hard to sit down and admit that no matter how hard you work or save there comes a time when you have to just push your pride aside and search for help.
We live a good life. We have loving family and friends that are our biggest source for strength and support. We have a loving marriage, a place to call home, a two year old pup that lets us know daily how much she loves us with her many wet kisses....and then just shy of 8 months ago we were given the biggest gift of all...a little boy to call our own....our Noah. We both work full time at steady jobs, we have two working cars to get us to those jobs, and are fortunate enough to have a health insurance policy provided by our jobs.
Unfortunately, sometimes all the hard work and blessings just are not enough. Having a special needs child is costly even with insurance. As soon as we get one bill paid a few others come in the mail with their empty return envelopes asking for us to fill them up and send them back to pay for this clinic visit or that test or this therapy session. At first we thought we could totally handle it. We had insurance and a tiny bit set aside for such reasons but 7 months later and we soon realized just how fast and how costly things truly are. Juggling insurance claims and co-pays and deposits and prescriptions and whatever else insurance does not cover becomes down right expensive.
We started to look into any and all programs we could find that could help Noah with his therapy or future costs. We are not sure if he will need special medical equipment or not but the way things are looking it is a pretty good possibility. Our insurance denied all genetics testing and we have one chance to appeal the denial and so we plan on doing so but have to wait for another four months before we meet with the geneticist and have him write the letter of appeal. Crossing our fingers and praying that our insurance will accept the appeal and we can get genetics testing for Noah. We know and understand that it will not change the outcome of his future. It would just be really nice to know if he does have a specific genetic reason behind all of his diagnosis. It would be invaluable to find out if we should start looking into other areas of his body if he does have a specific genetic diagnosis that may cause heart problems or liver failure. It would also be really comforting to know if his diagnosis is inherited and if we could pass along the same diagnosis to any future children we might have. If the appeal is not accepted then we will have to come up with the funds to pay for these tests on our own (aside from all the other medical bills). One test can be around $4000. Yikes!
These are the programs we have found so far and are trying our hardest to get accepted into.
Early Intervention Program: see your specific state or local EIP program
Application Process: One phone call and they had a therapist sent out to our house to evaluate Noah's abilities and go over his medical diagnosis to see if he had qualifying diagnosis's. It was very informal and more of a play date for Noah than an application process. We filled out the few pages of paperwork, turned in medical documents and financial documents and that was it.
Outcome: Accepted. We were accepted into the program and set up with three different therapists. A physical therapist, and occupational/speech therapist, and a vision therapist.
Thoughts: We have been set up with Utah's Early Intervention Program now for the past five months and that program is wonderful. It is based off of our annual income and not off insurance so we are billed a set amount once a month for as many therapy visits we can get that month. (because of recent program funding cuts Noah's visits have been cut down to about 3-4 a month now-----heartbreaking news for us and Noah's development but we will take what we can get).
Medicaid: http://www.medicaid.gov/
Application Process: This was a very lengthy application that took me a couple days to fill out and gather all the specific medical documentation and records requested. We had to submit three months worth of banks statements and pay stubs. They asked us all kinds of personal questions like the make and model of our cars, if we rented or owned our home, if we had a retirement plan, savings...ect. I then had to personally drop off all the paperwork (an entire binder full) to the medicaid office to have them flip through it all and make sure I was not leaving any T uncrossed.
Outcome: Denied. We were told we own too many "liquid assets" because we do not carry loans on the two vehicles we own.
Thoughts: This seriously made me irate. Just because we worked out butts off to pay our cars off so that we didn't have so many bills coming in and we get denied for being responsible adults. ***you can see I am still a bit fumed by this. According to the disability medicaid rules you are allowed to own one car but not two. We were also denied because both of us put a few $$$ into a savings plan each month (obviously to help pay all the medical bills but I guess being responsible doesn't matter once again)
Warning:
If
you are planning to apply for Medicaid, be sure that your finances are in order
so that you can qualify. Also, you may want to speak with a Medicaid case
worker (our Primary Children’s Hospital has one designated to specifically help
parents with their questions and to build a plan – so check out your hospital
resources).
Social Security Supplemental Security Income: http://www.ssa.gov/pgm/ssi.htm
Note: Because we were denied Medicaid we were told we would also be denied SSI for the same reasons so we decided not to waste time by filling out all the application pages knowing we were going to be denied.
Shriner's Hospital for Children: http://www.shrinershospitalsforchildren.org/
Application Process: A two page application that you print from their website and comes with a detailed instruction manual so you know exactly what they are requesting. Very easy and took me about an hour to fill out and print. You will want to include medical information. I got a signed letter from Noah's doctor outlining all of his conditions and diagnosis to make it easy for them to read instead of having to go through every single record.
Outcome: Pending.
Thoughts: Because I am a type A personality I went ahead and called to make sure I was sending my application to the correct address (your local Shriner's Hospital). You will want to make sure you live near a Shriner's hospital because it would be hard to get accepted and then have to fly to another state to get the services. We are fortunate to live within 30 minutes from a Shriner's hospital in Utah. If accepted we are hoping they could help pay for therapies and/or medical equipments costs (walkers or wheelchairs..ect). The woman I was speaking with on the phone was extremely friendly and that made my day a whole lot better.
Utah Division of Services for People with Disabilities: http://www.dspd.utah.gov/
Application Process: This was by far the biggest application to date. Many pages asking many questions regarding Noah's condition, diagnosis's, doctors, tests, current abilities, ect. I had to once again submit medical records, signed letters, a copy of Noah's SS card and birth certificate, and all of the paperwork from his Early Intervention Therapists. They also asked for copies of his xrays. It cost me $3.00 to mail the large envelope with all of his information in it to them. It was that heavy.
Outcome: Pending
Thoughts: I am not sure if this program is called something different in each state. I attached Utah's website in case you wanted to research something similar in your own state. This program is primarily a long waiting list that we hope to be put on. If we are accepted that is. If accepted and then chosen from the extremely long list it could help pay for respite care, Noah's thickener for his food, expensive formulas, diapers when he has outgrown baby diapers, ect. Basically each state is given a certain amount of money each year. When they get the money they go to the list and decide who from the list is in the most need and pay for the services needed for that individual. They go down the list and try to hit as many people as possible until the funds run out. The funds are usually allocated within a couple months. When the money is gone...it's gone! Everyone else just sits on the lost until the next year and hope that their needs are great enough to hold their spot on the list. If a person applies and their needs are greater your name gets bumped down the list. I have heard to plan on anywhere from 3-5 years before your name gets picked from the list.
****knowing the history of this list we decided to get Noah on it now as an infant in hopes that when he is older we might get picked and they might help us with the costs of caring for a special needs growing child (adult diapers, wheelchairs, respite care, other special needs costs, ect)
United Healthcare Children's Foundation (medical grants): http://www.uhccf.org/
Note: This program helps pay for costs AFTER insurance has covered their portion. You must have insurance to qualify and you must be a US citizen. You must turn in your most recent IRS tax form to see if you fall within their Adjusted Gross Income level (depending on size of family). We do not qualify because we do not fit within their criteria but I wanted to list this service so others who do qualify may apply. They actually pay your medical bills once you get them so you do not actually get money sent to you personally. You submit your medical bill and they pay them (if you are chosen for the grant). The amount awarded to an individual within a 12-month period is limited to either $5,000 or 85% of the fund balance, whichever amount is less. Awards to any one individual are limited to a lifetime maximum of $10,000. Grant recipients who are awarded less than $5,000 may re-apply for another grant once the current grant funds have been completely exhausted. The 12-month $5,000 limit (or 85% of the fund balance) and $10,000 lifetime maximum limits apply. An application must be submitted prior to the child's 17th birthday.
I would love to add to this list so please email me if you know of any other programs out there for people to seek assistance.
Suggested subjects or phrases to google in searching for medical assistance
1.
Medical assistance J (also add your state or counties name in
there as well)
2.
Health Care Costs, Help
3. "insert states name" waivers
3. "insert states name" waivers
4.
Financial medical assistance
5.
Respite care, costs
6.
Medical grants (and then enter “for patient” or “children”
or “medical bills” or “for single mothers” ect)
7.
Pennies by the
Inch : Primary Childrens Medical Center PCMC Pennies
Not every state participates but in Vermont my daughter qualifies for the Katie Beckett program. Basically it is medicaid for people who do not qualify based on income and instead qualify based on health needs. They cover anything left after insurance... our insurance is awesome so the state hasn't paid for anything yet - but it's nice to know we have it. We have to reapply every year.
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