August, 2013 – I took one of my sons to a pediatric specialist connected to a major children’s hospital and recommended by my pediatrician’s office. Little did I know how the visit would play out…..prompting this blog entry and a trip down memory lane.
Years ago, my husband and I decided to adopt a child from foster care. We had lots of reasons for doing so, not the least of which was our experience with infertility issues and our deep conviction that there are kids out there who need a home more than either of us needed a family experience of pregnancy. In 1990, our 2 year old son, J, came home to us after 9 months consisting of background checks, DCF parenting classes, and a lengthy home-study process. He joined his older brother, D. We were so excited and convinced that with enough love, J, who had already experienced 6 foster homes, would be fine. As newbie foster/adoptive parents with limited experience with poverty, child abuse, foster care and the like we had a lot to learn.
One of my first experiences with J was a trip to the pediatric dentist’s office in an affluent town. While sitting in the waiting area the receptionist called out to me and asked about insurance (no HIPAA laws back then.) I responded, “Title 19,” our state-sponsored insurance for folks of limited means and children in foster care. Every head in that room turned to me. I turned bright red, highly embarrassed knowing that my son and I were being judged. The assumption was that I was a “welfare mother.” I carried that feeling with me – that “less than” feeling for quite a while. After discussing the experience with my husband, we decided not to tell our pediatrician’s office that J had Title 19. (Things were different back then – not as much oversight regarding medical visits, etc.) We told them we were self-pay. We were worried that just like in the pediatric dentist’s office, that we would be made to feel “less than.”
The one place we absolutely needed to use the insurance was the pharmacy. Our son had a number of serious medical issues he was battling and our pharmacy use was extraordinary. On one memorable visit to the pharmacy, I had J in my arms, his fever exceeding 104⁰F. He was listless and his little face was bright red and blotchy from an ear infection, and a virus.
As we sat just beyond the pharmacy counter waiting for the prescription to be filled, I could hear the pharmacist and tech conversing. Their conversation went something like this:
Pharmacist: “Time for our break.”
Tech: “There are three more scripts to be filled.”
Pharmacist: “Let me see those.” Leafs through scripts. “Oh, Title 19. Finish the first two. This one can wait.”
A few minutes pass. I am boiling inside but I don’t have the courage to speak. The pharmacist fills the first two scripts and hands them out. He announces to the room, “Fifteen minute break. We’ll be back.” He and the tech leave…
Now J is crying. He is in such pain and my heart is breaking for him. Then he vomits. ALL.OVER.THE.STORE.AISLE. I tell the girl at the front counter as we walk out WITHOUT HIS MEDS. J and I are in tears and I am angry. I hear her sigh and call for a mop.
That evening my husband picked up J’s meds then drove directly to a local mom and pop pharmacy. He explained everything to the owner who was kind and welcoming. All our family business – and probably not one dollar of profit from our son’s Title 19 prescriptions – went there until the day they closed. The staff there treated us like family, and we were there often enough that we felt like family! (We moved our business to the pharmacy that hired most of the staff from that pharmacy once it closed so it still feels like home!)
Weeks later, I found myself discussing ongoing medication needs for J with our pediatrician. He was worried about the cost to us. Not thinking, I told him not to worry about it – that Title 19 would cover every penny. Abruptly, he stopped speaking, left the room and returned with a nurse. He asked her to stay with my son while he took me into his office. He wanted to know why we were self-paying for all of J’s visits (and there were boatloads of them.) I told him about our family agreement not to use the insurance after our dental experience. Holding my hand, he assured me that his office loves all of the kids – and especially my son, that we were to give that insurance card to the office and he did not want to speak to me about this again. He hugged me and I tearfully thanked him. That practice has been our family’s blessing for almost 30 years now.
Parenting a child from foster care changes us – as parents and as people. I learned over the years to speak up on behalf of my kids, to advocate, to be brave in the face of prejudice. I came to realize how often people who use state insurance are pre-judged – as lazy, as poor, as uneducated, and as unreliable. I developed a great deal of empathy for families affected by poverty, especially my kids’ birth families. These are parents worried about putting food on the table, paying the utilities and making the rent. They are worried about violence in their neighborhoods, race issues, domestic violence and lack of educational and job opportunities –I cannot even begin to fathom how overwhelming this must be. What obstacles they face! And I know they love their kids. For the first time in my white, middle class life, I knew a little bit about what it felt like to be treated as “less than.”
In 1998, I adopted from foster care again, this time as a single parent. M, at 6 months of age, entered our home and our hearts. Such a sweet baby! And so far behind developmentally.
Evaluated by Birth to Three and deemed functioning at an 8 week old level, by the time he was 10 months old he had made substantial progress developmentally and was even walking.
Two years later, DCF came knocking again, this time with a high legal risk 6 week old baby boy with some serious medical issues – my son, D. Although unsure whether he would return home to his mom or become a permanent member of our family, the boys and I decided together to welcome him into our family. D’s addition to our family began another serious learning curve in advocacy. D is African American.
How many times D and I were the recipients of stares and comments because of race, I cannot even count. Strangers thought nothing of walking up to us and asking if he was mine. Some made comments I am sure they thought helpful like “My niece married a black man and he was very good to her.” Other common comments: “You’re his babysitter?” “He’s not your ‘real’ son, right?” I learned when to use humor and when to use direct eye contact and a calm voice edged with steel and when it was safer to simply walk away. I learned more about prejudice and white privilege than I could ever have predicted but, I also learned about the power of love and the overwhelming number of wonderful, thoughtful people in the world. For them, I am forever thankful.
So, let’s get back to last week.
And the pediatric specialist.
It was a blisteringly hot day when we stepped up to the desk to sign in at the specialist’s office. I announced our names and held out the insurance card. The woman looked up and looked from me to D. She said, “Are you his mother?” I replied that I was. She responded, “Are you his biological mother?” in an incredulous voice. I responded that I was his adoptive mom. Remember, D can hear our conversation. She said she would need proof of his adoption. I actually laughed. I found it so absurd that I would be asked that. In all the years as his adoptive mom, I’ve never been asked that before. “You’re kidding?” I asked her. His adoption was finalized 11 years ago.” Very seriously she stated that she was not kidding, that this was a state law passed last October. The conversation went on a bit in this vein and finally I blurted out, “You would not be asking me this if my son and I looked alike.” She became defensive, responding angrily, “Are you calling me prejudiced? I have a black father.” I repeated myself, this time a little louder. This was not okay and I was going to be sure they got that. We were asked to step away from the window and she said a manager would be out to speak with me.
We sat down and waited – a long time. People were staring. I called my pediatrician’s office and asked if they could locate the adoption papers in their files – from back in 2002. We agreed that our first goal was to have D’s medical needs met. So off to search she went despite her disbelief. And D, he was so embarrassed. Rarely had he seen me so angry and indignant. I kept repeating over and over, “This is not okay, D. No one has the right to treat us differently than other families. NO ONE. And I will see to it that this is fixed.”
To make a long story short, the adoption certificate was faxed to the specialist and we were seen. It took 2 hours for the whole debacle to play out. As soon as we got back to the car, I called CAFAP (CT Association of Foster and Adoptive Parents) to speak with Diane Orlando, whom I’ve known for years, to get some advice. She echoed my thoughts with her first comment, “What!!?!?! No way! That did not happen!” I dropped D off at school with the observation that this was not going to stand and I would discuss it with him again when he got home that afternoon. Then I went to work.
I called the DCF Commissioner’s office – I thought they should know how their adoptive parents were being treated. I spoke with the DCF Ombudsman’s office where my indignation appeared to be shared. And I called the “President of the Hospital” where I spoke with his Executive Assistant. I recounted what had happened with each of them. During the final call I mentioned that my next call would be to the media. Asked what I was looking for, I stated, that I was okay with them asking for my son’s adoption certificate if they asked EVERY parent for proof of legal guardianship, be it birth certificate, adoption certificate or Guardianship papers. But that it was not, nor would it ever be, okay to create a second class of parent – the adoptive parent. Either ask every one of us for proof of relationship or none of us. I was promised a response ASAP.
The Patient Relations and QI rep for the hospital called within an hour at the behest of the President’s office. Once again I patiently recounted what had transpired. She said she would look into it and get back to me quickly. A few hours passed. The phone rang. It was the patient advocate. She apologized on behalf of the hospital, the specialist’s office and on behalf of herself as a mother. After consulting with the Senior Vice President for Legal Affairs she said the office staff had misunderstood and misapplied new regulations (not state laws) regarding patient relations. Our conversation at the office should have gone like this:
Receptionist: Are you the legal guardian for the patient?
Me: Yes
Receptionist: What is your legal relationship to the patient?
Me: Mother
Receptionist: Thank you
And with that last answer, we should have moved on to the mounds of registration paperwork every new patient fills out.
Had I answered, “Foster mother, grandmother (aunt, etc) with guardianship, social worker, or in–the-process of adopting, then and only then is staff to request paperwork to show proof of legal guardianship.
I was told the entire staff for that particular office would be attending mandatory retraining on this matter so that this would never happen to anyone again. I am satisfied with the outcome and so is D.
Advocacy… something we learn and teach with every decision we make to confront wrongs or to stay quiet and invisible. My love for my children is the gift that taught me that I cannot be silent or invisible when I perceive injustice. And last week was simply another opportunity to demonstrate this.
by: D – adoptive mom