Tuesday, July 17, 2012

Washington: the Down and Dirty

The previous post was a presentation of my part in the briefing that occurred yesterday in Washington.  This post is meant to give a little more of the impressions we took from the day...

I spoke first at the briefing, then listened to the neonatalogist discuss the pressures a family with a child in the NICU are under.  Okay, been there, done that.  The expert from Florida got up and discussed the difficulties the Florida Medicaid system has been having (which is well-known if you are living in our world).  For those who are NOT aware, Medicaid, unlike MediCARE, is a STATE-RUN program.  That means it varies tremendously from state to state.  This has been a source of great frustration to me since we entered the system.  Anabelle gets FANTASTIC Medicaid coverage, the only real problems being with the bureaucracy of it all.  Children with her exact same condition in OTHER states cannot get anywhere near the kind of coverage that she receives, especially regarding our in-home nursing care, which is absolutely vital to the function of our family.  Listening to Mrs. Ray speak, I was feeling pretty good about the ol' PA.

Then Dr. Dorn got up and started talking about how the system functions in Louisiana.  My sails started to deflate.  AUTOMATIC renewals!  Medicaid and CHIP working JOINTLY!  ON-LINE APPLICATIONS AND RENEWALS!!!  No more leaving my child and going down to the Medicaid office on Crosby Street in Chester to renew her benefits, or make a simple address change.  *Sigh*  It's like SN heaven....

Ah, well, that's what we were there for, to encourage more states to push for updates and reform in the system.  We had nice feedback from everyone we met...except that one guy...

Inexplicably, the briefing organizers left sheets of paper on the table where attendees could write ANONYMOUS questions for the moderator to ask the panel.  Most people who had questions simply got up and asked us themselves.  The only person who filled out the anonymous sheet was the one with this question, "What are your thoughts on the moral question of paying all this money towards the care of children who will never become taxpayers?" *Claws Unsheathe*  The question was directed to the neonatalogist, who sort of stumbled over an answer, clearly trying to be politically correct about it, and then she turns to me and says, "Mrs. Linzey, do you have anything to say about this?"  HMMM, let me think about that one....

I declined.  For two reasons.  1. The program was running late, the attendees were gathering their things and heading towards the door, and I had a train to catch; and 2. Because if this ignoramus was going to hide behind a piece of paper instead of asking me his ice-hearted question to my face, then I was not going to deign to answer him.

But, for you, my dear friends and family, I would like to offer this response, should you ever be confronted with this question in regard to my daughter or any child you know know who is never going to become a "contributing" member of society:

Dear Mr. Clearly-Not-A-Parent: My child is a daughter, a sister, a granddaughter, a great-granddaughter, a niece and an irreplaceable friend to hundreds of people.  Anyone who has ever met her will tell you that their lives were never the same again.  She has taught me more about compassion, understanding and unconditional love in her two short years of life than I had ever known in the 32 before she was here.  What good is a government to ANY of its citizens, if its most important job is NOT to protect and care for those who are not able to care for themselves?  What purpose does ANY public program have if it is not to lift up those who are down?  I'm not sure what you think the function of organized government is if it should marginalize anyone who does not feed directly back into the system.  I am curious to know who you think should set the parameters of defining what makes someone a valued member of a society.  I am also curious to know what you think SHOULD have happened with my child.  She is alive.  Would you like to make her otherwise?  Please come back to me with your question when you have a plan in place for how to deal with these "undesirables", and the results of public polling on how many Americans think your plan is a model for the society they want to live in.  Thank you.

Mr. and Mrs. Linzey Go To Washington

In our journey with Anabelle, we have made the acquaintance of a wide variety of folks in a wide variety of fields all over the world.  When Anabelle faced a Medicaid crisis, we had reached out to Public Citizens for Children and Youth, an advocacy group here in Philadelphia.  They passed our story on to local media outlets, which led to the newspaper articles we have been featured in.  They also put us in touch with Community Legal Services of Philadelphia, who were collecting stories of Medicaid issues, and from there our information was passed on to the Georgetown University Health Policy Institute Center of Children and Familes.  Georgetown has been hosting a series of briefings for Capitol Hill staff on Medicaid reform, and they invited us to be guest speakers at the fourth and final installment entitled, "Reducing Red Tape: Removing Barriers to Children's Medicaid/CHIP Coverage".  We traveled down to Washington on the Acela train, courtesy of our hosts, were treated to a lovely lunch, and then I sat on a panel with three experts: a neonatalogist; the project director of a program in Florida that helps children get Medicaid, and a Senior Fellow from the Health Policy Center at Urban Institute.  Following is the presentation I made before about 100 congressional aides and staff people:

Good afternoon.  Thank you for inviting us to be a part of this panel and share our story.  Anabelle Rose was born May 12, 2010 at 39 weeks gestation after a perfectly normal and healthy pregnancy.  In fact, after her birth, the delivering doctor pronounced her a healthy baby girl.  It was not until 2 hours later that the pediatrician came in and told us something was not right.  She was transferred that day to A.I. Dupont Hospital for Children in Wilmington, DE, where she spent the next two months in the neonatal intensive care unit.  Three days after her birth we received the diagnosis.: Anabelle had a rare,  debilitating neurological disorder that would leave her a cognitive newborn for the rest of her life, which is not expected to be long.  We had absolutely no warning prior to her birth that we should expect anything other than a healthy, typical child.  It was a terribly stressful time for us, having a newborn with an extremely rare disorder we had never heard of, a toddler who was not yet three, and therefore was not permitted to enter the NICU, and two businesses to run, without which, there was no income. 

The bill for Anabelle's two month stay, which included two surgical procedures, came to just over $100,000.00.  We are extremely fortunate that the social workers at the hospital helped us establish Anabelle's Medicaid disability insurance and had it predated back to her birth, as that is not a bill we ever would have been able to repay.  I remember wondering how other families managed to get all of that paperwork in order if they did not have a social worker available to help them.  The packet of forms that had to be filled out was so daunting, and we were so emotionally overwhelmed at the time.

At home, Anabelle requires round-the-clock care.  She suffers from seizure disorder, and must be monitored for seizure activity.  She takes all of her sustenance and medication through a gastronomy tube in her stomach.  She has quadriplegic cerebral palsy, and is not capable of much independent movement.  She requires catheterization 6 times a day to evacuate her bladder.  She requires oxygen when she sleeps, as her brain's "sleep mode" slows her respirations too much to allow sufficient intake of oxygen on room air.  She wears a pulse oximeter at all times, as she is prone to cat-napping, and her oxygen levels can plummet rapidly.  She has a sleep disorder and central apnea, and only sleeps a few hours at a time, at most.  She cannot be left unattended at any time, day or night.  It would be impossible for Anabelle to attend a traditional daycare, as they would not be qualified to care for her special needs.  I cannot hire a teenage babysitter to come sit with her.  For these reason, we have in-home nursing to help care for her.  A nurse comes from 8-4 on weekdays so that my husband and I can work, and we have night nurses who come from midnight-8 am, 7 nights a week so that we can sleep.  Medicaid fully covers this care.

Anabelle also sees 12 different specialists to keep all of her bodily functions operating as best they can.  She takes twenty different doses of medication a day.  All of these things are covered by Medicaid.  It would be completely impossible for the average family to pay for the cost of this care.  It would be difficult for most to even make the co-pays that accompany private insurance (if they could even get their child to qualify for it).  Without Medicaid, we would be unable to care for our child.  I have no idea what would happen to her, or the rest of us, without it.

Which is why it was so terrifying the day we discovered that her coverage had lapsed.  In Pennsylvania, Medicaid needs to be renewed every year.  This means that Anabelle's was due for renewal in early June of 2011.  I faxed the renewal paperwork to our local Medicaid office the week before it was due.  We received no notice that it had been received, but it is not part of the practice that they send such notice.  We also received no notice that it has NOT been received, or that Anabelle's coverage had been terminated. 
On June 29, 2011, Anabelle was hospitalized for extreme vomiting, a urinary tract infection and respiratory issues.  It was during this visit that it was discovered that she was not maintaining her oxygen levels while asleep, and would require oxygen to be available to her at all times.  When the social worker at the hospital tried to make arrangements  with our medical supply company to begin delivering oxygen to our home, the supply company told her that when they ran Anabelle's insurance, it came back as terminated.  My husband immediately began trying to call the Medicaid office to find out what the problem was, while I immediately left the hospital to go to the Medicaid office myself.  We knew from previous attempts to contact them that it was impossible to get through on the phone.  You either get a busy signal, or the phone rings, unanswered.  In the full year that Anabelle had been receiving Medicaid, we had NEVER gotten through on the phone.  Anytime there was something that had to be discussed regarding her coverage, we had to go to the office in person.  It was no different this time.  While my husband continued to call the office dozens of times to no avail, I was sitting in the waiting room of that same office for 2 hours, waiting to see a case worker.  When I was finally seen, I was told that we had not filed the paperwork on time.  I argued that this was not true, but without proof, they insisted the mistake was on my side.  I was told that we would have to reapply for her coverage, and that the approval process could take up to 30 days.  Anabelle could not come home without oxygen.  That means that she would have to remain in the hospital for that entire time, causing undue stress to our family, and costing Medicaid (once it was reestablished), a tremendous amount of unnecessary money in hospital fees

Over the next several days, we tried contacting the Medicaid office by phone at least 100 times, and never got an answer.  Finally, while searching through our paperwork, we were able to find the receipt that our fax printed after we faxed the renewal documents, proving that we had, in fact, submitted them on time.  Once again, I had to go down to the office with that paper in my hand, and only then did the office staff admit that the mistake must have been on their side.  Anabelle's insurance was reinstated the next day.
So, here are the questions that arise: why was that paperwork not processed properly when it was received?  Why would it take 30 days to process a new application, knowing the child was in patient,  when it took only one day to reinstate it after it was proven the mistake was on their side?  That delay would have resulted in thousands of the taxpayers' dollars paying for an unneeded, extended hospital stay for my child.  Why did I have to do to the office not once, but twice, while my daughter lay in a hospital bed, and my other child was cared for by family, and my business went unattended, all to clear up a simple clerical mistake that could have easily been handled over the phone or online, if those services had been available?

Medicaid is invaluable to our family.  The care Anabelle has been able to receive at no out-of-pocket cost to our family has kept her alive, relatively healthy and very happy for the past two years.  Not to mention, allowing us to provide for the rest of our family without all of our income going to medical costs.  However, it is also a source of stress on our family.  The bureaucratic red tape barriers cost us valuable time, something that is already a commodity in a special needs household.  My daughter's condition is not going to change.  She is permanently disabled.  She will always need and qualify for her Medicaid coverage.  Renewal should be a very simple process.  In this day and age, when all nature of business is conducted online, it is archaic and inconvenient that I have to physically drive to the Medicaid office to have a simple question answered.  When Anabelle's insurance was due for renewal again this year, my husband drove the forms to the office and asked for a receipt to show date of delivery.  He was told that no such thing existed and could not be provided.  So instead, we mailed the forms by certified mail, so that we were sure to have proof that the documents arrived in their hands.  It would be much simpler to be able to submit the forms online and have a receipt e-mailed to you for your records.  The inefficiency of the system is costing families time and taxpayers money, both of which are in short supply in today's world.

We look forward to the day when the policymakers make it easier to access this invaluable resource by removing the red tape barriers and ensuring that all children who desperately need this coverage receive it quickly and easily.  It would take much longer than the short time I have today to describe the obstacles Anabelle and our family must hurdle every day of her life, and our time with her is so very precious and fleeting.  We hope that maintaining her Medicaid coverage can stop being one of those hurdles.

Thank you for your time