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Health & Fitness

We Are Not "Less Than"

     One day last week I took one of my sons to a pediatric specialist appointment – a specialist recommended by my pediatrician’s office.  The specialist’s practice was connected to one of the major hospitals in the area.  I felt confident that my son’s needs would be met and that we would have a positive experience.  Little did I know what was to come next…..prompting this blog entry and a little trip down memory lane.
     Long ago – although it seems like yesterday – my now ex-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 my experience with ongoing infertility issues and our deep conviction that there were (and still are) kids out there who need a home more than either of us needed to experience a pregnancy.  Our goal was a child and the genetic heritage of that child was not all that important.  In 1990 our son, Joel, came home to us after 9 months (how apropos!) consisting of background checks, parenting classes, and a home-study.  He joined his older brother, Daniel.  Both my ex-husband and I are from solidly middle class backgrounds.  Our experience with poverty, child abuse, foster care and the like was limited to my volunteer hours with the domestic violence shelter in Waterbury.  We were mere “babes in arms.”
     Back in January of 1990 when we attended classes through DCF, there were 3 volumes of three-ring binders filled with the bios of kids who were waiting for adoptive homes.  During class we were allowed to read through them.  It was heartbreaking to read about all the kids who needed homes.  We picked Joel, a medically complex 2 year old, from one of those books.  There was no internet so what we learned about the experience of fostering-to-adopt was what we were taught in class; what we could glean from other families attending classes; and what we learned from the social workers assigned to us.  Little did I know that this would mark the beginning of my life’s work and become my calling – to advocate for and bring the experiences of families who foster and adopt to the public, and to help find more families for the kids who wait. (Click here for info on foster care and foster-to-adopt in Connecticut.)
     While the boys were young it was my primary responsibility to care for them.  One of my first experiences with Joel was a trip to the pediatric dentist’s office.  There were no HIPAA laws back then and often I felt our privacy was the last thing on providers’ minds.  (One good thing about HIPAA!) I will never forget, we were seated in the waiting area and the receptionist called out to me and asked what insurance my son had.  I was a “good girl” back in those days and I answered promptly, “Title 19,” the term used for state insurance carried mostly by indigent folks, especially those on “welfare” back then. Every head in that room turned to me.  I turned bright red and retreated inside myself, highly embarrassed and thinking that my son and I were being judged.  And we were.  The assumption was that I was a “welfare mother.” I carried that feeling with me – that “less than” feeling for quite a while.  I remember discussing it with my husband. We jointly decided not to tell the pediatrician’s office that Joel had Title 19.  The stigma was so ingrained and we did not want to have to explain our situation to everyone who cared for Joel. 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.”  (By the way, we never went back to that dentist.  We began a many-year-long journey moving from dental office to office looking for a good fit until the reimbursements for state insurance increased so that kids in foster care and kids adopted from foster care could find dentists willing to see them. Another issue that foster and adoptive parents no longer face in Connecticut.)  
     The one place we absolutely needed to use the insurance was the pharmacy.  Our son had a number of medical issues he was battling and our pharmacy use was extraordinary.  On one memorable visit to the pharmacy, I had Joel in my arms, his fever exceeded 104⁰F and he needed antibiotics for a recurrent ear infection.  He was listless and his face was diffused with bright red blotches. In addition to the ear infection, he also had a virus.  It was a week day.  My husband was working.  I did not want Joel to suffer any longer than he needed to so waiting was, I thought, the best option. As we sat just beyond the pharmacy counter waiting for the prescription to be filled, I could hear the pharmacist and the tech conversing.  It 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 say nothing.  I am boiling inside but I don’t have the courage to move.  The pharmacist fills the first two scripts and transacts the sales.  He announces to the room, “Fifteen minute break. We’ll be back.” And he and the tech walk away…   
By this time Joel is crying.  He is in such pain and my heart is breaking for him.  Then he vomits.  All.over.the.store.aisle. I announce it to the girl at the front counter as we leave. I am in tears.  I hear her sigh and call for a mop.
     Upon his return home later that evening my husband picked up the meds then drove directly to Cheshire Pharmacy, a local mom and pop pharmacy that I miss to this day.  He explained our situation to them and briefly told them what had happened earlier in the day.  Joe DeLuca, the owner, welcomed us wholeheartedly.  All our business – and probably not one dollar of profit from our 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 Cheshire Pharmacy so it still feels like home!)
     A while after joining a local  pediatric practice, Pediatric and Adolescent Medicine, I found myself discussing ongoing medication needs for Joel with Dr. Alonso, the head of the practice.  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.  He abruptly stopped speaking.  He left the room for a minute.  He came back in with a nurse and asked her to stay with my son and he took me to his office.  He said he wanted to know why we were self-paying for all of Joel’s visits (and there were boatloads of them.) I told him about our family agreement not to use the insurance after experiencing firsthand how families on Title 19 are treated.  He replied (in no uncertain terms) that his office loves the kids – all of the kids – and especially my son, and that we were to give that insurance card to the office and he did not want to have to speak to me about this again. (If you know Dr. Alonso, you know this was said in the sweetest way. LOL) He hugged me and I thanked him through my tears. That practice has been our family’s blessing for almost 25 years now.
     Parenting a child from foster care changes so much about who we, as parents and as people, become.  I credit my sons for much of this.  Those experiences were back in the 1990’s.  I learned over the years to speak up on behalf of my kids, to advocate, to be brave in the face of prejudice. To be bold and to teach my kids to be bold. You see, I began to realize that 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. For my kids’ birth families.  What obstacles they faced!  And I know they loved their kids. For the first time in my white, middle class life, I knew what it felt like to be treated as “less than.” I cannot even imagine how that affects those whose battles are far more all-encompassing than my insurance issue.  To be worried about putting food on the table, paying the utilities and making the rent, in addition to violence in the neighborhood, race issues, domestic violence and lack of educational opportunities –I cannot even begin to fathom how overwhelming this must be.
     Over the years, Joel visited many specialists, most often at Yale.  At first I was intimidated by the doctors and even the fellows.  But, as those of you who are mothers know, we can become fierce to protect our children from perceived harm.  It took a while but both Joel and I learned to speak up.
     Once, waiting for the pediatric endocrinologist, Joel had had quite enough of the long, dreary, boring wait in the exam room.  His solution: (after consulting with me and getting my okay) go out into the hallway and start loudly vocalizing that a doctor needs to see him NOW.  We were seen within 5 minutes.  He was tickled that they had listened to him.  Another time he watched intently as I told a group of student doctors that one and only one person was going to perform the exam on my son (it was a rather embarrassing and intimate procedure which was repeated every six months.  The last two times they had 3 people perform the exam.  Hey!  This is a little kid here, not a practice dummy!!!) They had a choice and could choose the person but if they did not know what they were doing and then the head doc came in and wanted to perform the exam again, it was not happening. They chose to have the head doc perform the exam.  The students watched.  I was learning and Joel was learning from me.
     In 1998, after a divorce and much soul-searching I adopted from foster care again.  Zachary, at 6 months of age, entered our home and our hearts.  Such a sweet baby!  And so far behind.  He was seen by Darcy’s Birth to Three program and deemed functioning at an 8 week old level.  By the time he was 9.5 months old he was caught up in many domains and walking – despite our best efforts to slow him down a bit.  What a gift the Darcy staff was for us.  Cheshire folks – we are indeed blessed!
     Two years later, I was approached about a 6 week old baby boy with some medical issues – my Daymond.  Although unsure whether he would be a foster care placement or another adoption, I decided to go ahead.  After all, Zach’s brothers were so much older than him, it felt like he had two uncles, not two brothers.  I felt that perhaps God was giving me a nudge to provide Zach with a sibling he could grow up with.  Daymond’s addition to our family began another serious learning curve in advocacy.  Daymond is black.
     How many times Daymond and I were the recipients of stares and comments because of race, I cannot even count.  People thought nothing of walking up to me and asking if he was mine.  Some made comments I am sure they thought were helpful like “My niece married a black man and he was very good to her.” And “You’re his babysitter, right?” “He’s not your ‘real’ son, right?” I learned when to use humor and when to use direct eye contact, and a calm, gentle voice edged with steel.  I learned when it was safer to simply walk away. I learned more about prejudice than I could ever have predicted and I also learned about the power of love and the overwhelming number of wonderful, amazing, thoughtful people who populate this world. For them I am forever thankful.
     So, let’s get back to last week. And the pediatric specialist. And my son, Daymond. On one of those blisteringly hot days last week, 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 Daymond.  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, all this is going on in his hearing.  She responded that she would need to see proof of the adoption.  I actually laughed.  I found it so absurd that I would be asked that.  I’ve never been asked that before.  I responded by asking her if she was kidding as his adoption was finalized 11 years ago.  Very seriously she stated that she was not kidding, that this was a state law that passed last October.  The conversation went on a bit in this vein but I was getting angry and finally I blurted out – still using a not-too-loud voice – “You would not be asking me this if my son and I looked alike.”  This apparently made her defensive and she responded in a loud voice by asking me if I was calling her prejudiced and then stating that she had a black father. I repeated myself, this time a little louder.  I was not going quietly into the night as I would have when I began this journey.  This was simply not okay and I was going to be sure they got that.  We were asked to step away from the window and told a manager would be out to speak with me.
     We sat down and I called my pediatrician’s office and asked if they could locate the adoption legal papers on file from back in 2002.  They were just as shocked as I was to hear what had happened but our first goal was to have Daymond’s medical needs met.  So off to search she went.  Poor Daymond.  Sweet boy. He has rarely seen me so angry and indignant. He rubbed my arm and asked if I needed a back rub. (He knows I am a fool for his Tae Kwon Do black-belt-strong fingers and hands chopping up and down my back!) I kept repeating over and over, “This is not okay, Daymond. No one has the right to treat us differently than other families. No one.  And I will see to it that this is fixed.”  As we sat waiting, I posted the situation on Facebook.
     To make a long story short, the pediatrician’s office staff faxed the adoption certificate 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, (using my ear piece) I called CAFAP (CT Association of Foster and Adoptive Parents) to speak with Diane Orlando, a friend and an old supervisor, to go over what happened and get some advice.  She echoed my thoughts with her first comment, “What!!?!?!  No way!  That did not happen!”  I dropped Daymond 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.  I called Senator Murphy’s office and asked them to help me.  And I called the “President of the Hospital” where I spoke with his Executive Assistant.  I recounted what had happened with each of them.  With 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 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 us all for proof of relationship or none of us. I was promised a response asap.  I checked Facebook.  It had exploded with outraged responses from friends, colleagues and fellow adoptive parents.  I responded with my promise that I was not going to rest until something was done. The Patient Relations and QI rep for the hospital called within an hour at the behest of the President’s office.  I again patiently recounted what had transpired.  She said she would look into it and get back to me quickly.  A few hours passed.  I had finally begun to feel normal, not so insulted, angry and disrespected that I could not think.  The phone rang. It was the patient advocate.  She apologized on behalf of the hospital, on behalf of the office manager in the specialist’s office and on behalf of herself as a mother who would be just as irate as I was. She had consulted with the Senior Vice President for Legal Affairs.  It seems the office staff had misunderstood and misapplied new regulations (not state laws) regarding patient relations. The conversation 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 we should have moved on to the mundane matter of mounds of registration paperwork.
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 and so is Daymond.
     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.

     If you are interested in becoming a foster or adoptive parent, contact me at 203.706.0101.  Families are needed especially for older kids, medically complex kids (similar to mine) and sibling groups.  The most famous commercials (and funniest) about foster parenting are also the most true I’ve ever heard. The series is called, “You don’t have to be perfect to be the perfect parent.”  Check them out on YouTube. (Link)



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