We have the most beautiful little girl in the world. She is smart, funny, confident, talented and wonderful. She is a blogger, a clothing designer, and a prolific artist. And she is all of these things in spite of impossible beginnings that should have ruined all chances of reaching her potential.
Our Genevieve was born at 25 weeks gestation in November, 2oo2. For those who are counting, that is about 15 weeks - or more than 3 months - to soon. She spent 3 months and 1 week in the NICU, relying on oxygen and a feeding tube for most of that time. She had a severe brain bleed, multiple deadly infections, and other problems that are described in thousands of pages of medical records.
We met Genevieve on February 12, 2003, just 2 days before she was released from the hospital. Before we could even hold her, we had to sit with an adoption lawyer, review the damning medical files, and sign a paper saying that we would be her parents forever. The first moment I laid eyes on her, I was terrified because she couldn't even take a bottle without forgetting to breathe. Her arms were slack at her sides, and no amount of stimulation could keep her awake for more than a few minutes. She was 3 months and 1 week old.
And she was so beautiful. She had these big blue eyes that filled her little face. Her skin was smooth and perfect. She looked like a porcelain doll. We fell in love with her from the first moment we held her.
We brought our Genevieve home. We signed her up for home-based therapy, found a pediatrician, and checked in with a pediatric opthalmologist. Time passed, and we enjoyed every second of parenthood.
Then, when Genevieve was about 15 months old, an Early Intervention evaluation showed that we she was about 50 percent delayed. That meant that she was functioning like a 7 or 8 month old. She wasn't walking. She wasn't babbling. She couldn't sit up or crawl very well, and she couldn't feed herself. It broke our hearts.
At the time, I was working full time as the Director of Development for our local Arc chapter. (The Arc used to be called the Association for Retarded Citizens, but had long since dropped that name in favor of the less descriptive and less insulting "The Arc.") My Mom was babysitting Genevieve, because her immune system was too fragile for group child care. Mom was running her to monthly pediatrician appointments, inviting therapists into her home for regular early intervention services, and learning what she could about preemies. Meanwhile, I was working 60 hours a week and, with my husband, making just enough money to pay the bills.
But Genevieve's evaluation scared the hell out of me. Clearly, she needed more than we were giving her. A 50 percent delay is huge. It could mean Cerebral Palsy, mental retardation and a host of other problems, each with their own acronyms and scary prognoses. We knew that she was at a high risk for all kinds of problems, so this wasn't a surprise. We couldn't change what had happened before. But we had to do something to change Genevieve's future.
So I quit my job. Our income went from $75,000 per year to $35,000 per year in a day. Suddenly, we were a lower income family, making less than we needed to survive. I knew that we needed more money, and more services, to get by. I called the Social Security Administration.
They gave me an appointment one month in the future. I needed that time to compile dozens of reports and hundreds of pages of medical records to prove that Genevieve needed help. We were lucky, because somehow Genevieve was approved for SSI (Supplemental Security Income) on the first try. Most people are rejected over and over, needing attorneys and appeals to get the help they need.
But there was one little problem. Before we could access the benefits, we had to spend our entire savings account and cash in life insurance policies to make ourselves poor. You see, a family can only have about $3,000 in total resources and still qualify for SSI for their dependent child. We had $8,000 in the bank - money from our last income tax refund. They told us to spend it. So we did. We spent our safety net.
Finally, after about 5 months, Genevieve qualified for about $400 a month in SSI, plus the magical Medical Assistance card.
Now, the cash was helpful, because it replaced some of my income and helped us make ends meet. But the MA card was like gold. At the time, Genevieve was receiving 2 hours per week of Speech Therapy, 2 hours per week of Occupational Therapy, 1 hour per week of Physical Therapy and other services that everyone agreed would be her best shot at catching up. Without MA, these services, not covered by our private insurance, would have cost us about $4,200 per month.
"What?" I can hear you asking the question. "Surely you must be joking." I am not. This wasn't funny at all. Had I continued working, we would not have been able to afford even half of the services our daughter needed to catch up. I had to quit, and we had to become poor.
SSI has monthly income limits, and if you exceed them, your check and Medical Assistance benefits dry up. But if we stayed below the threshold, Genevieve could have uninterrupted assistance for 3 years. We figured that was just enough time to get her on track.
Oh, and did I mention that, from the age of 15 months to 4 1/2 years, she awakened screaming dozens of times each night? That was fun.
So we got our income down to about $33,ooo per year. I started using WIC checks to pay for Genevieve's expensive, high-calorie formula. (We could no longer afford the $80 per week to pay for it ourselves.) I had to flash a bright yellow Access card to cover medical services. And I suffered through excruciating calls to the local Social Security office. (Luckily, these calls were infrequent because our lazy, incompetent clerk rarely returned my calls.) Twice I was accused of fraud and ordered to repay every penny of SSI that Genevieve had received, and I spent dozens of hours filing appeals and explaining how we could not repay the money because we had been ordered to spend all of our savings. At one point, I had to justify our cars, which were needed to take Genevieve to appointments and get my husband to work. (One SSA clerk told us to sell our car to repay an "overpayment." The car was 12 years old, and I had to justify our right to keep it.)
I really began to understand how people receiving Public Assistance are wrongly stigmatized. People looked at me with such contempt when I presented my WIC checks, rolling their eyes because they knew I would hold up the line. Parents at the doctor's office would shoot me weird looks when I explained Genevieve's insurance coverage to the clerk at the window. I had to beg, borrow and steal to get the expensive leg braces replaced every three months instead of the allowable two times a year, because Genevieve was finally growing. (At the age of 1, she weighed 12 pounds and the doctor was going to classify her as "failure to thrive.") And I had to jump through hoops to prove that I was my daughter's Rep Payee when I tried to deposit her SSI checks into our account to pay the bills.
There were hundreds of times when I was humiliated, questioned and judged by providers, government workers and people on the street. A "friend" even commented that the government spends too much money to save babies who are a drain on the system. (I extracted an apology and made him feel like a real shit, I can assure you.)
Finally, when Genevieve was 4 1/2 years old, she started to catch up. The services were discontinued because she didn't need them anymore. We gradually gave up OT, PT, and Speech in favor of home-based counseling and Therapeutic Staff Support to help her cope at home and in preschool. She began to show us her extraordinary gifts, and we saw that she finally seemed to enjoy living in her own skin. Things had turned around, and we were so grateful.
Then I was offered a great part-time job at a local non profit agency. We weren't out of the woods, but we could see the path that would lead us home. I took the job and increased Genevieve's home-based counseling to address her anxiety about being left with a babysitter. I did as I was told and called the Social Security office to let them know that I would be returning to work in June. Everything was looking great.
And then, at 5pm on a Friday, my second day of work, I got a call informing me that all of Genevieve's benefits had just been cancelled, effective immediately. Her services would end that day, because I would eventually get a paycheck. They took away her benefits before I saw a penny from my new job, and did so in a manner that almost lost me my job. You see, Genevieve also has a serious anxiety disorder that made it nearly impossible for her to separate from us, her parents. For her, seeing me leave for work was terrifying. We relied on the counselors and therapists to help us get her through the transition. Without their help, I had to consider quitting my job after only two days. It was all terribly ironic, because I did not see a paycheck until almost a month later. Technically, we were still qualified for benefits until we exceeded the income guidelines. But that didn't matter to the computer.
Well, I yelled and screamed and wrote letters and got the benefits restored under a different funding stream. The services continued, and I kept my job. We made it through, and we managed to save money again, without the Social Security Administration breathing down our necks.
But I learned a lesson, and it helped me understand how people can be beaten down by a broken, unforgiving system. When you need help, you are treated like a criminal, with so many traps to catch you when you aren't doing anything wrong. One misstep, and you lose everything. And when you finally try to better yourself (by getting a job, for example), they yank the safety net right out from under you before you can find your footing.
So, we made ourselves poor in order to give our daughter the future she deserves. Given the chance, we wouldn't change a thing. Now we have this exceptionally talented, loving, articulate little girl who can do anything. She is so smart that we can't keep up with her, and she is a blessing to everyone who meets her. And you know what? She not only caught up - she left her peers in the dust.
So sure, we used public assistance to help our daughter. We took taxpayer money to access services and supports that we could not otherwise afford. And we are glad we did it. The government money spent was really an investment in our child's future. Now she really will reach her full potential. And when she does, you watch out. She is going to be fantastic!