SSI Again...

Surprise SSI again...

I don't think we will ever have any resolution with them, ever. And it's not about being pessimistic, it's being realistic. Today's notice indicates that there is now an overpayment of $324.89 from November and December of last year, although I was told verbally that all was current and up to date and that there were no outstanding overpayments. Not the truth. I'm not sure I could get a hold of anyone there that would tell me the truth. Which means I will be yet filling out my appeal and request for formal conference, yet again. I think this is the seventh time in less than six months, and still to this date no one has yet to get back with me on any of the outstanding overpayments sought against us. I've contacted our local politicians, that died on the vine quickly, no one really wants to fix the system or help families like ours. It's very frustrating and tremendously exhausting. Other families tell me they are experiencing the very same problems we are, not just in this state, but all over. Our special needs battles are many as it is, and this just adds to them as we are struggling to help our children. It all falls of deaf ears, no one hears us. It's so much easier to look the other way because these problems do not belong to them, it isn't their child in need.

We found some help with the Chelsea Hutchinson Foundation who is going to help pay $2,500 towards the final cost of obtaining Noah's Service Dog. A huge blessing and gift for Noah. That foundation is also assisting us with key chains, magnets and buttons for Noah's fundraising efforts. That's where we are with that, still saying a lot of prayers and crossing our fingers for the best. Again if you'd like to help Noah you can send your payment to:

Noelle's Dogs Four Hope
15954 Jackson Creek Parkway, Suite B, PMB #453
Monument, CO 80132
WITH: PAYMENT FOR NOAH WARDEN indicated on your donation

Noah's loving that spring has finally arrived, he enjoys his nightly walks around the neighborhood. The warm weather also brings out the neighborhood children and it makes us painfully aware that Noah should be running around on playgrounds with other children and can't. Chris said he seen another dad like him the other night when he took Noah for a walk. An older boy going down a slide with his dad at the park. I could tell that Chris longed for that friendship in a dad that understands the same journey he is sharing with Noah. But he said he walked on and just admired from a distance. Hopefully they will connect with God's perfect timing.


Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Service Dog Help for Noah

News on the Medicaid front is that Noah's benefits will be re-instated within 5-7 days. I am hopeful but not overly confident that this will finally get corrected. I do however have a letter that was faxed stating that Noah is eligible for Medicaid should he have a medical emergency and I need to take him to a doctor, so I have some relief there. Noah also got some new special needs shoes this week, he's been adjusting to them okay. We've also been trying bamboo braces for Noah and they offer him a range of stability to try to prop sit with assistance. It is still a very difficult task for him, but we continue to work with him everyday. Noah is in full-swing summer mode, requiring daily walks after dinner.

We received a call that after a year of being on the wait list for hippotherapy that there may be a spot for Noah mid-April, while we weren't promised a spot yet, we are asking for prayers to make it possible. We are hopeful that the rhythm of a horse's gait will help strengthen Noah's head and trunk control and maybe even bring about the beginnings of communication for him. We of course aren't sure how we will fund the $750 every 10 weeks, but will pray that God will also find a way for that too.

Chris and I have decided to pursue obtaining a service dog for Noah and his needs. This dog would be trained in many areas from alerting us of the onset of a possible seizure should Noah ever experience them again, mobility and stability and be trained to call for help. The service dog will also be Noah's life companion pulling his wheelchair and bringing him things such as toys since he can't do it himself. We also have been told that a dog will help with Noah's socialization in the world and people will be less likely to see Noah as handicapped when they see he has a companion dog by his side. A concept I find intriguing and comforting. We decided to work with a local agency that would work directly with Noah and our family's individual needs. The organization is called Noelle's Dogs Four Hope. The total cost of obtaining Noah a service dog is $8,000. Something we cannot do without help.

Noelle's Dogs Four Hope is taking donations on Noah's behalf to help raise money to obtain him a dog. If you would like to help, please send your donations to Noelle's Dogs Four Hope at: 15954 Jackson Creek Parkway, Suite B, PMB #453, Monument, CO 80132. You must put Noah's name on the payment for him to receive credit. Thank you so much in advance for helping Noah. We are hopeful we can make this a reality for him.

Thank you all for continuing to think of Noah and sending prayers and positive thoughts our way. We feel it on our hardest days and it continues to keep us hopeful in all things possible.

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Benefits Withdrawn

Just as I think things have been resolved and sorted out receive a call today from one of Noah's therapy centers informing me Noah has made the list for children that are no longer eligible for Medicaid and therefore he can't attend therapy. I keep thinking surely it's an oversight, but sure enough after I make numerous calls to SSI, Medicaid, the Jefferson County Department of Human Services they all confirm that Noah's benefits have been withdrawn without "further information." Noah has been without insurance since March 1st. That means no therapy and the most frightening part, no help with medical costs should he need to see a doctor. I keep wanting someone to pinch me so I can just wake up from this bad dream. All of it - from the very beginning when a doctor uttered the words "severe global brain damage." How has this become our lives? I really am not sure how to sort it out this time, SSI says I have to deal with Medicaid, Medicaid tells me I have to deal with the Department of Human Services... and I continue to be bounced around. We seem to be stuck in some serious muddy waters.


I walked by a picture of Noah taken when we took him off life support with the Lay Me Down to Sleep Foundation that hangs on our bedroom wall, usually the picture brings me such comfort - my miracle picture. Yet today, it brought pain, not for me but sadness for my Noah. I just wish I could do so much more for him. Get him therapy he needs and deserves for a chance to get better, equipment so that he can sit upright and not have straps digging and cutting into his shoulders because he is too big, stable positioning so he has a chance to learn to eat better, a bed that offers him safety and elevation so he can breathe and sleep better. A chill-out-chair to sit with the rest of the family on the couch to feel apart of the family, a toilet so he can go potty like any other toddler. There is no worse feeling in the world than feeling like you are falling short when it comes to providing for your children. Noah deserves so much more, and the system is failing him - it's failing us.

I am so frustrated that I can't seem to fix Noah's SSI and Medicaid problems, that I don't have the funding I need to get him all necessary therapies that Medicaid won't fund, all the equipment he needs that is denied. It is such an uphill battle each and everyday, and it does wear on me, I think I've aged years, cried a thousand tears, and fought many wars and I still feel like we're not much further ahead than where we started.

New news articles are being passed around the special needs community of doctors who feel that euthanasia or "after birth abortions" should happen for children like Noah so they don't cost the community money, time and efforts. People discussing how they just used to put thumbs down children's throats to suffocate them in the old days to prevent children like Noah from existing. And really it does feel like most times that many view Noah as a burden on society. We haven't come as far as people might think. Even an article with a mother stating: "If I were the mother of a suffering child - I mean a deeply suffering child - I would be the first to want to put a pillow over its face... If it was a child I really loved, who was in agony, I think any good mother would." Well then put me in the group of bad moms because I love Noah so much that I would die for him before letting another human being harm him, I would cut off my right arm if I could find him all the therapy in the world, I would give away my all my earthly possessions and live in a box if he was given every opportunity he deserves in this world. Once you become a mother you fight for that precious life that God blessed you with at all costs. I only wish that these evil thoughts about children like Noah didn't exist. I fear greatly that there seems to be so many that casually think you should erase a disabled child's life and just "end them" like they never happened. that they are this financial burden sucking society and taxes dry. I know I could sit her on my soapbox all day long and my small voice can't change a thing, but until my dying breath I will be here for Noah giving him everything I've got, even if that means continually hitting my head against brick walls when it comes to getting him the help he is entitled to.


For those interested in reading about these horrific thoughts about terminating precious lives like Noah these are some articles: We all should be very afraid of the direction this world is headed. We welcome all the prayers we can get as we continue to fight on to help Noah.

http://www.dailymail.co.uk/news/article-1317400/Virginia-Ironside-sparks-BBC-outrage-Id-suffociate-child-end-suffering.html

http://hme.bmj.com/content/early/2012/03/01/medethics-2011-100411.full


Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Benefits Are Back

Some people measure the closeness of Spring by a groundhog seeing its shadow, some predict Spring's arrival with a flock of robins in their yards, we however predict Spring in our house by a change in Noah's sleeping pattern. And according to Noah Spring is very close. Noah has had some really great therapy sessions this past week, he's working hard and doing things I never thought I'd see him do. Even his vocalizations are starting to change and every so often I can swear I hear a familiar word.

I finally won the war with SSI and Medicaid after nearly thirty days of calling daily, correspondence and ultimately at the end getting more firm and loud than usually suits my typical demeanor. I never did get one return call back after my many messages - not even from a supervisor. Not one courtesy call back at all in thirty days of leaving messages. They should change their voice message to say "we will never return your call" from "we will return your call within two business days." As a former government employee I find this type of customer service completely unacceptable. The very least you can do is return someone's phone call. I finally got a hold of a gentleman on the phone and refused to let him hang up, or transfer me to someone else and demanded since no one else would help me that he was going to. He reluctantly did, confirmed that the last letter ever sent to us was a SSI denial, and that no paperwork had been sent reinstating Noah's benefits, I told him that was unacceptable, and that I needed something in writing that day that expressed Noah's reinstatement of benefits. I think I scared him a bit and played every power card I could think of straight down to I onced worked for a Judge and quit pulling my leg with crap and produce results. Sometimes you just have to get firm, as being overly nice gets you put off. To say the least by the end of the day I had a fax in hand confirming Noah's reinstatement of SSI and Medicaid.

I am sure that the SSI and Medicaid problems will likely appear in the future again, I am still not confident that Noah's amount is accurate and believe they have likely set us up for additional overpayment problems. Yet they now tell me they no longer want me reporting Chris' income monthly like they asked me to do previously. It's like dealing with a Bi-Polar agency. So it sounds like we'll be dealing with a new audit a year from now. And really the idea of a year of not having to deal with this hassle and worry about Noah's benefits seems rather a relieving idea.

After a few days of working out travel and courier arrangements with a vendor, Noah was finally able to trial the chill-out-chair. It is so nice to get him off the ground in a chair that is safe for him to lounge in - especially now that Luke is trying to literally walk all over him. Noah seems to enjoy his time in the chair, and I am genuinely glad we had the opportunity to try it. I hope one day we might be able to find a way to get him one. It really is a nice piece of furniture for a child like Noah that would last many years. I expressed a big interest to the vendor and he sent me a quote of $2,528 including shipping and handling. That's enough to make one fall over. Really you would think somehow I could get used to seeing big sticker prices for anything Noah needs, but my jaw continues to drop every time.

Noah seems to be working very hard on his arms and hand coordination. His new favorite activity is to take out the DVD's on the lower half of the rack. He empties the entire lower level, and I put them all back and we do this all day long. Often times he gets quite mad at me when I put them back, as I think he feels he spent all that effort getting them all out only for me to put them back on him. I am rather pleased though that he seems to be enjoying himself and that he puts so much focus on the task. Noah works so had and is so proud of the things he can find a way to do. Hopefully that inner drive he has will fuel him to do so many more amazing things in life.


Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Signature Struggles

Each day continues to have it's own individual signature struggle. Today I had to take Luke to the doctor, and had to take Noah with us. There is no one to call for help - no extra set of hands or even someone to stay with him. Chris and my mom work through the day, so I'm on my own. I had hoped Noah would be calm and collected, I coached him; asked him as if I was reasoning with a child that could easily communicate and agree to my terms, but to no avail. The moment we walked through the doctor's office doors, the hysterical screaming started. He has a tremendously negative memory association with anything relating to any doctor's office. I know he was disrupting all around him, some people realized Noah was handicapped as he arched and flung his arms about smacking me in the face, others probably thought he was simply a misbehaving tantruming child as they looked at me with distain for why I couldn't get my child under control. Finally a nurse asked if she could help me, I am always hesitant, as I know that Noah often has difficulties with strangers, I told her the only way he'd calm is if she walked him around the building outside. She was so willing to help and off they went outside to stroll around while I dealt with Luke. I felt bad as although that nurse has a heart of gold for Noah, I know that she didn't sign up for appeasing a special needs child on a walk today. Some days you have to admit you can't do it all, and today was one of those days for me. As hard as I try to juggle both Noah's needs and Luke's needs, there are days when I simply need help.

Noah's equipment and therapy needs continue to increase with little to no help from Medicaid. Chris and I struggle tremendously with asking for help, but are considering opening something called a "gofundme" account on Noah's behalf to aid us in getting him all that we can't. Noah needs specialized shoes, the quote is $193.50, plus $30 shipping and handling, he would likely need another pair in the fall, equally as expensive. Chris and I have realized for sometime that we lack adequate seating and creature comforts for Noah, he spends his entire day laying on the floor, there is no other place for me to put him. He has no stander, no corner-sitter, no chair, nothing. He has nothing. I searched for options for Noah that would both make him comfortable and make him be able to participate with us, and stumbled on something called a Chill-Out-Chair. I made an inquiry to the maker, and with tremendous kindness, a trial chair was offered to Noah to try in-home. It still needs to be transported to a location I can closely pick it up at, but it should hopefully be available for him to try this coming Monday. I have a feeling we will fall in love with it, but the base price for the chair is $1,500, and that doesn't include tray features, custom foam features or a roll bar. Most of Noah's therapies are also out of pocket costs, and we are having trouble keeping up, yet we recognize that Noah genuinely needs all of these therapies to help him with his continued recovery of his gross and fine motor skills.

Over the past three years I've faced on again and off again criticism for being honest with our personal struggles on Noah's special need journey. Many really want you to depict nothing else other painting everything rosy. While even others in the special needs community feel that you are doing a dis-service to special needs children everywhere if you come off as less that the strongest, happiest, thrilled with the land of special needs person on the block. I however feel that is simply attempting to hide behind the pain. I don't want to be fake, I don't want to sugar coat how I'm feeling, what life is like for Noah. Sure we have days that fill us with moments of joy, how can you not when God grants you the gift of your child waking up and smiling at you each morning, but without a doubt heartache and struggles exist daily.


I wrote my first guest blog for Handicap This that was published today. Handicap This was formed by two men, Mike Berkson, born with cerebral palsy and Tim Wambach, Mike's long-time companion, on a mission to further awareness about judgment, and breaking down the barriers with those with handicaps and reminding everyone of each other's potential regardless of physical challenges one may face. You can find my guest blog at the following link:

http://handicapthis.com/2012/02/17/be-the-change/

"Once all struggle is grasped, miracles are possible." Mao Tse-Tung


Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The Painful Walk

This week I've spent approximately three hours each day on the phone dealing with SSI, Medicaid, Therapists and Equipment vendors, really without much resolution to anything. SSI has decided that Noah is no longer eligible for SSI based upon figures they claim to have received from the Department of Labor, even though Chris' paycheck stubs reflect something entirely different. In addition, they still have not done anything with the numerous appeals and requests for informal review that I have submitted in regards to multiple overpayment determinations that we disagree with, that have been outstanding for as long as six months. They claim our case has a new caseworker assigned to it, hence the delay in action and review, however this is the same caseworker that we've had since at least August of 2010. They also denied receipt of many paycheck stubs despite the fact that I have fax confirmations and certified mail receipts to indicate otherwise. And they tell me I will never receive written confirmation of any debts or monies still outstanding on any overpayment dispute once they decide to get around to working on my requests for review. Since this determination, Noah's Medicaid will also be cancelled effective 2-29-12 unless I can get them to fix their error, although they warn me there will likely be a lapse in coverage until they determine and review his eligibility. I know that Noah is still entitled to SSI benefits and that an error has occurred, I just am simply having a difficult time getting anyone to correct the mistake.

Medicaid also did not approve Noah's PAR requests, so he was unable to attend physical or occupational therapy this week and we said goodbye to the Stingray pediatric stroller/wheelchair that was on loan from an equipment vendor. I also called to figure out what I could do about our denial on the toilet seat, Medicaid claims that the equipment vendor failed to properly document Noah's need which resulted them making a determination that Noah did not need a toilet seat and I was simply "a lazy parent on Medicaid services who didn't want to potty train a normal child." They told me they need a letter from a doctor "written at a 3rd grade level" outlining Noah's exact disability and all that is wrong with him for them to consider equipment. When I called back to tell them back today to see if I had to appeal or submit a new request, I was now told that the equipment vendor and Noah's doctor would likely need to do a conference call with Medicaid, and that I may or may not have to appeal, but they couldn't give me advice on how to proceed or which way would be better to either resubmit a request or appeal.

It's truly unbelievable that we have to go through so much to get Noah help and services. It isn't just hard enough to have a special needs child that cannot walk or talk that I have to care for on a 24 hour basis 7 days a week, but I have the added stress of trying to deal with all these other agencies that are doing all they can to creatively get out of assisting him. We've lost our privacy, as I have to explain to each therapist how Noah is doing, how he got a pea size bruise on his head, why his skin is dry, why his face is red, asked how much does he weigh now, how tall is he... when did he last poop, how's his eating... you constantly feel like you're under a microscope even though I am caring for Noah with every fiber of my being and doing all that I can to be the most incredible super-parent I can be to him. There is nothing NORMAL about our lives - nothing. It's been stolen, all of it.

No one calls to ask how we're doing, friends... family... well - where are they? Only two neighbors came to my door with cards to uplift me for my birthday, help me when we got buried with nineteen inches of snow. Everyone has moved on, our lives are too complicated, who on earth would even want to deal with half of what we deal with? Some days I dream of how we can find our way back to how life once was - the way things were supposed to be before our lives were forever flipped upside down. I would never want anyone to walk in my shoes, what a painful walk it is.


Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Waiting for Miracles to Blossom

Noah & Daddy out in the Snow

We received notification that Noah's request for a toilet chair has been denied by Medicaid:

"f/u 2/7 e-mailed, D339497 denied flamingo, per Melissa, ref #2360219, client is not toilet trained at this time so equipment is not a benefit. She said he needs to be toilet trained to request equip. LMN from Kerry states he is beginning to use body language and sounds to tell parents when he needs to use the bathroom and is responding to verbal cues when asked if he needs to use the bathroom."

It's not like I can dangle him over the toilet while his floppy body goes side to side to potty train him. Regular children get training potties... yet it's a BIG deal if you want one for a special needs child - they aren't quite "entitled" to the same commodities or luxuries the rest of us are. So no toilet, and no chair. It is such a big misconception that insurance helps. Really it's quite a joke if you're on this side of the fence. It truly is terrible to need something for your child's daily living that you can't get your hands on. These items are literally thousands of dollars. There isn't a chance of paying for them out of pocket. Combine that with Noah's out of this world therapy costs and it's enough to make you want to throw a tantrum bigger than Rumpelstiltskin. One not so friendly SSI representative told me a few weeks ago that if I didn't "like" the system and how it benefited my son that I should go sit on my state representative's door step... oh yes isn't that the answer to everything.... it all falls upon deaf ears. Not to mention what time do I have to try to negotiate unfair terms with the government?

Noah has been in great spirits for the last few weeks. Lots of smiles and giggles - especially for his daddy. Although Noah still seems to be struggling with eating soft solids like spaghetti still, he has taken renewed interest in eating his little brother's yogurt bites, and Quadratini chocolate wafer cookies. He finds the crunch it makes funny, and I'm thrilled he will at least bite down on something, other than my finger and his toothbrush. I still continue to pray that with a lot of time, patience and love, that Noah will one day eat solid foods.

Our big snow storm brought us 19 inches yesterday, I watch the neighbor kids play, sled and build snowmans. I try to pretend it doesn't pinch my heart but it does - some part of me I suppose will always ache for Noah to participate in age appropriate activities. His daddy did take him outside briefly to see the snow, but the snow is simply too bright and he just squinted and was the best sport he could be for 5 minutes while his younger brother touched the snow for the very first time. It's like night a day sometimes, having two children that experience the world in very different ways. Noah missed out on so many activities from sucking on his thumb to putting odd objects in his mouth, to even grabbing a handful of snow and finding awe as it melted and disappeared. And I genuinely think that Noah understands his surroundings and recognizes his little brother who is not even half his age can do things he only dreams of. As a mother I can only hope that it will fuel his drive to work hard to gain back the physical abilities that he lost at birth. So for now we continue to wait on miracles to blossom, just like we await springtime.

"Where hope grows, miracles blossom." ~ Elna Rae

Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.