I have often wondered (and have admittedly said out loud) if many of our elected officials just woke up one morning and decided to be a politician. Now stay with me on this one …. how well do you know your local State Representative or your Federal Congressman and Senator? Do you know what they did before you voted them into office? Now there are those career politicians who have been in the political arena for what seems to be a lifetime but these days it would appear our state and federal capitols are filled with doctors, lawyers, farmers and even stay at home moms who made a late in life decision to run for public office and somehow convinced you that they would fight for you, they would listen to you, they would be there for you … their constituents; the people who matter most to them. They love their hometowns, local diners and Friday night football games during campaign season but where do they disappear to after the election is over?
My time in a Federal Congressional office was not what you might expect. I had no experience in politics, no idea about legislation and bills. My parents had never written a campaign check and I can assure you the front of our house had never been adorned with a politicians yard sign. My parents always voted, made sure their children voted when that time came and stayed on top of local, state and federal news but that would be the extent of their political involvement. So when I told my parents that I was going to go to work for a Congressman I think they were a tad taken back by my sudden career change from the non-profit sector into a world I knew very little about. I had done my research and knew there were many jobs within a politicians office that didn’t require knowledge of the endless paper trail of legislation. There was also one other job I absolutely did not want, in fact I even said at my interview that I would not be good in that position. So what did I want to do? I wanted to shake hands, kiss babies and cut ribbons! I wanted to take pictures and post them on social media of my Congressman hard at work. I wanted to be out of an office, in the field and around as many people as I could surround myself with. It was what I had done for 20 years in planning special events for National non-profits and quite honestly, I loved it. The deeper I got into my interview, as I heard the words coming out of my mouth explaining what I really wanted to do … it did not match up with my intentions coming into this new and unfamiliar career change.
It wouldn’t take long for me to figure out that I was going to have to learn much more about our state and federal government than I had imagined. My days of being in the field and surrounding myself with smiling faces and friendly handshakes had been replaced with 4 walls, a really nice desk and a phone that for the next 4 years would never, ever be put down. And let me say this, the voices on the other end of that phone would not be friendly, happy ones that wanted me to kiss their babies or cut ribbons at a grand opening. The voices on the other end of that phone were the sounds of frustration, sadness, desperation; it was the sound of someone who truly needed help. I had been offered the one job I did not want, the one job that I very adamantly said I would not be good at. We were all new, no one in our office had ever worked for a Congressman before. In fact our Congressman was even new; we would all learn together as a well thought out and well executed team. Our boss had a talent for that … finding people’s strengths and weaknesses, putting them all together in a room and somehow it just worked.
It would take a while before I began to realize just how very valuable my role in this office would be. I had become the lifeline between the Congressman and his constituents. I had been given a great responsibility to help those who needed help the most and I had the power to do so. It was a very humbling thought knowing I could truly make the difference in someones life. Someone who had no where else to turn, someone who just needed one person to listen, one person to care enough to say I will help you. This was my job, this is what I was meant to do. This was my life I was living and no one even knew. At the end of my interview I was asked to answer one question, no right or wrong answers but to be very honest.
At the end of the day what do you want to have accomplished?
As I sat across the table and began to say I have already told what I wanted, I stopped myself from repeating the same answer I had already given and simply said …
At the end of the day I want to have helped someone. I want to have made a difference in the life of someone I have never met, will most likely never meet. I want someone to know that there is just one person who took the time to listen to their story and without expecting anything in returned … helped.
I remember those days in the NICU with Elizabeth as we drew closer to our time of going home. I remember how alone I felt, how helpless and scared I was. I didn’t have a single friend that had a baby that had been sick other than the common childhood illnesses. I had no idea who was going to help me if I had questions or concerns or God forbid if something happened to Elizabeth and I didn’t know what to do. Before we left ACH I was visited by a case worker. I was asked to fill out paperwork that would put Elizabeth on a waiting list for what was known as the Medicaid Waiver. In true Pam fashion I questioned why I was even doing this, we had no idea how Elizabeth was going to progress and I didn’t want to seal her fate by signing a piece of paper that would allow for help someday should we need it. I reluctantly signed the paper, turned on the heel of my favorite black shoes and walked away with each step echoing through the white sterile hallways having no idea that 13 years later I would be fighting with everything I had for her number to be called off that list.
When Elizabeth was born she was commonly referred to as “Bed 5” … doctors, nurses and therapist would swarm around her and give their morning reports repeatedly calling her bed 5. Bed 5 had 3 blood transfusions during the night; bed 5 was turned at 3am; bed 5 was revived with manual CPR at 5:33am. Even when I checked into the NICU to visit I had to announce myself as the mother of bed 5. Her name is Elizabeth, we will all call her Elizabeth and if you need to refer to the bed she is then let’s try Elizabeth in bed 5. The doctors came to respect me for this, I gained the trust of the nurses and soon everyone knew who Elizabeth was and bed 5 was simply used for inventory purposes. Over the years Elizabeth has been assigned many numbers but none quite like the number that has defined who we are today.
I never thought I would be the one on the other end of that phone asking my elected politicians for help. In fact, I don’t want to be that person. I don’t want to be frustrated or sad or even desperate but here I am; phone in hand and can’t find anyone to listen to our story. We are just a number, a number that falls very far down on a waiting list that should not even exist. A childs disability should never be defined by a number, a family’s need for help should not have to be put on a wait list for 13 years with little hope of ever seeing that number move. You may have heard that Arkansas has dedicated funds in the amount of 8.5 million dollars from a now obsolete program previously funded by a tobacco settlement and a federal pull in allowing 29 million more to help reduce the wait list for the Medicaid Waiver. Social media buzzed for days of this great news, right up until it was announced that it would service 500-900 families of a wait list that currently houses over 3000 children and young adults; noting that it will most likely be on the low side of 500. When I learned that the Arkansas Senate would be voting on this bill I wanted Elizabeth, Caroline and Alex to be a part of this eventful day in Arkansas politics. I wanted our Senators to see a family they could potentially be helping and express our deepest gratitude for their vote. We were allowed to sit on the Senate floor and as they opened with morning announcements Elizabeth was recognized, followed by Caroline and then Alex. The story of Elizabeth was being shared and as I looked up, each Senator had stood to their feet, turned towards where we were sitting and began to clap. I was overwhelmed at their appreciation for our family and humbled by their act of kindness. Soon a line began to form and one by one each Senator shook the hand of each of my children, some even bent down to give Elizabeth a hug. A face had been put to a bill, a family and their story had been identified … we were advocating for families all over Arkansas. The kids were invited to sit in the Senators chairs as votes were placed; Senators took time to explain what was happening and what the bills would mean for Arkansas. It was a great day at the Capitol!
A few days later it was rumored that one of our State Representatives was going to present a bill to the Public Health Committee that would do away with the Medicaid Waiver wait list all together. I was asked to share our story with this committee in hopes that they would better understand just how very important this bill could be for thousands of families. Writers are not always polished speakers. I fall into this category, easily. And to add to that, not all public speakers are great writers. Along with my journal that I write in periodically during the day and use my thoughts to write from; I also have what I call my “messy journal” which is the book I use when I sit down to blog and scribble notes in so I don’t forget a thought I want to share or information I want to make sure I get right. I made the decision to write a letter to the Public Health Committee and then read that letter. Talking about Elizabeth comes very easily for me. I absolutely love sharing her story and how she has changed my life but it can also be very emotional and I wanted this committee to truly understand how the waiver would be beneficial for our family. I was 4th on the list to speak. The first few families were already receiving waiver services and spoke at length about their experiences of being on the waiver. Prior to me there was a young lady who also had written a letter. As she was preparing to read the letter a Representative called for a time limit of 2 minuets per person. As the young lady, confined to a wheelchair began to read her letter she was quickly interrupted 2 minutes later that her time was up. I was absolutely astounded that this had just happened. Her letter was just a few paragraphs, not pages long and now she was being so abruptly cut off. I began to panic; I knew my letter would be more than 2 minutes … however less than 5 because I had read it over and over and over hoping to sound less like I was reading a letter and more like having a conversation. As I sat down and looked around only a few looked up. Some were reading, some looking at their phones and others carrying on conversations. I began to speak, my voice shaking and I can’t even tell you what I said. The only thing I remember is hearing someone say … your 2 minutes is up. I asked if they had any questions … no one did. No one asked a single question to any of those speaking on behalf of this bill. A few more people spoke, again mostly those who already had services. The bill died in committee with a vote of 6 yes, 7 no and 7 members absent. As the vote was taken, those who said no could barely be heard and those that said yes, thank you. I heard statements like … where is the money coming from? Why should disabled children take priority over the aging or foster children? (This question was asked by the same Representative who suggested the 2 minute time restraint) We have already made great strides in reducing this wait list. And yes, absolutely the first step has been taken to help reduce the number of those waiting for services, but let’s be honest … this bill had advantages that many other bills won’t always have. The money was already there, waiting to be used. It was a matter of deciding where it would best be spent and while this will help it just simply will not help enough.
When I first started working for Congress I read a book titled “Surviving Inside Congress” Within the first 3 pages there was a passage from one of our original Federal Congressman explaining that Congress had been formed for the purpose of representing their constituents and the needs of those constituents. These original Congressman were in Washington to work for the people who had sent them there, to make the lives of their constituents better. That focus has been lost over time and many of our politicians have stopped listening leaving the needs of their constituents unmet. I find myself in a unique situation having worked very closely with the constituents of Arkansas on behalf of a law-maker and now finding myself being one of those constituents. I have seen this from the inside and understand how extremely valuable and important it is for our Representatives and Senators to take the time to visit with and listen to those that put you into public office to help them. You can’t make everyone happy all the time, believe me I know this. Your job is not an easy one, but you have an opportunity and the power to really make the difference in the lives of those you represent.
“Our purpose in life is to help others. If you can’t help them, at the very least don’t hurt them.”
I felt it was very important this letter was read, not just for me and Elizabeth but for all of the families who find themselves just another number on a waiting list.
My name is Pam Forester, however I am most known as Elizabeth’s mom. I want to thank you for your continued commitment towards the Medicaid Waiver and the need to reduce the waiting list. My daughter, Elizabeth is currently number 2505 after 13 years on the waiting list. Two years ago I was forced to leave my career as a Congressional Staff Member to care for Elizabeth. As a single mother with 4 children and a passion for public service this was one of the hardest decisions I had to make. I had to walk away from my only income, health insurance and a future I had invested much time and love into. I was going through babysitters and nanny’s on a monthly basis because of the level of care Elizabeth requires. I could not afford to hire a qualified nurse due to the expense. It was unfair to my boss, my co-workers and my clients at work to be gone as much as I was due to the number of doctor appointments Elizabeth had in a single month. This does not even include illnesses or unscheduled emergency surgeries. I qualified for and took my FMLA however for every hour I missed of work I was docked that from my paycheck leaving me having to borrow money just to pay for childcare. My babysitters were now making more than I was. It was a vicious cycle that finally required me to stay home. I chose not to accept any state government assistance except for Medicaid for Elizabeth’s healthcare even though I qualified for many programs. I tell you this because I want you to know there are people who honor and respect the government and work you are doing to help those that truly need it. Last week Elizabeth and 2 of my children had the great honor of sitting on the Senate floor when HB1033 was passed unanimously. Even though we knew we would not benefit from this bill we wanted to be a part of something that was going to change the lives of so many families. I hope you will feel free to share Elizabeth’s story and ask questions as there is great challenge in sharing 13 years of reasons why our family would greatly benefit from the Medicaid waiver as you move forward with the continued reduction of the Medicaid Waiver wait list. Thank you for your time.