Miss America from the adoption subsidy office and Mr. Lawyer have both said that subsidy will eventually happen, but they are doing nothing to help.
Then Sir- the Director of the Agency of Disappointment calls me yesterday and left a message asking for: "an update on ...um... the child we placed." HE DIDN'T EVEN KNOW HER NAME!!!! I wanted to fly to California and tattoo it on his neck.
So I gave him an update. Here it is:
To Sir-
I missed your phone call yesterday. I got your message today asking for an update on the child that you placed. I called your office today and they suggested emailing you as you're out of the office. I am CC'ing my attorney into this email so we all stay on the same page.
Cataleya (the child you placed) was admitted into the hospital on Monday after going into respiratory distress and turning blue. She caught a cold and her body could not handle the extra work load. She's on oxygen now and steroids to help her lungs until the virus passes. They also have her on IV antibiotics to prevent pneumonia. We'll be in for several more days.
I have been working diligently to acquire appropriate services for Cataleya. She is being seen by Cardiology, Endocrinology, Pediatric GI, and her Primary Care physician- who is in contact with Genetics and Immunology. They'll be getting involved with her later as her heart becomes less critical. She is receiving Physical Therapy and Speech/Feeding Therapy through our county's early intervention program. She is receiving home nursing and has a medical supply vendor for her durable medical equipment.
We enlisted the help of SKIP (Sick Kids need Involved People) for Service Coordination. They have followed her and helped me work with our insurance company and county programs to make sure her needs are met. They have also contacted your office in the process of trying to help me obtain Supplemental Security Income (SSI) and Medicaid for Cataleya. Through that contact, I received Cataleya's OBC and her Mother's relinquishment as well as a new placement Affidavit with her birth name and other alias' on it. When SKIP called back to request your office apply for SSI for Cataleya, our service coordinator was told you would not be providing anymore assistance for Cataleya to receive benefits.
My attorney, Mr. Lawyer, has requested papers from your office needed to prepare court documents for finalization. As of last week, he had not received any communication back from your office. He reported that because of this delay, we are not looking at finalization this year.
I have been in contact with Ms America from NYS Office of Children and Family Services. She is the supervisor of the AAP program here. She has assured me that subsidy can be obtained for Cataleya in NY per the guidelines you gave me at placement, "eligibility must be determined by adoptive parent's state of residence". To do this, Cataleya would need to be IV-E eligible. IV-E eligibility is obtained through applying for SSI which in turn qualifies her for Medicaid in our county and AAP in our state. Since SSI and IV-E are federal programs, they can be applied for regardless of our or your state. Our state would then use the federal eligibility to determine state subsidy. OCFS suggested I look into fair hearing rights concerning this issue since it is their opinion that applying for IV-E/ SSI is the responsibility of the placing agency. OCFS was surprised that these applications were not done prior to Cataleya leaving California.
I attempted to apply for Medicaid through our county and was informed that while Cataleya's medical condition qualifies her for Medicaid and State Medicaid waiver, they are unable to process an application prior to finalization UNLESS she is SSI approved.
I took the information sent from your office to my town's Social Security office where they told me I would not be able to access her SS# until we have a court adoption decree. I took that information into the city's Social Security office with a sob story and some compliments and did get her #, but no card. I asked to apply for SSI and both offices told me that the placing agency must apply for that as we are not her legal guardians.
I called the Agency of Disappointment office in our city, NY at the suggestion of Agency of Uselessness and OCFS. They told me that it would seem the placing office would be responsible for applying for IV-E eligibility, and that working my way up to regional directors might cause some movement in our case.
Cataleya is currently covered by our medical insurance through my husband's job. Still, we are seeing large, reoccurring medical expenses that will grow as she needs more medical intervention. She gets all of her nutrition/medication through a Gtube placed in her abdomen. We pay out of pocket for the bags and tubing needed for her feeding pump- $85/month. The specialized formula she has been prescribed by her Dr. is completely out of pocket- $139/week (appx $550/month). She is currently prescribed 8 medications that are partially covered by our insurance- our portion of those medications is $120/month. She is being followed by several specialists and her primary care physician. Our portion of her visits equal $175/month. Her Dr referred us for skilled nursing in our home- the out of pocket cost is $125/visit for 2 visits/week. We have also purchased specialty bottles/feeder, and Stoma powder this month. Those misc. expenses have averaged $50/month.
All of the expenses I have listed are covered by Medicaid.
I will do everything humanly possible to ensure my daughter's medical care is complete and appropriate. That includes pursuing these programs that help with her care both now and long-term. One of the reasons I knew we could parent a child with such severe medical complications is because I'm a relentless advocate for what is right and for those who can not speak for themselves. I knew if anyone could get this baby better, it would be me. I am finding that this firm perseverance and resourcefulness- however inconvenient for those in our way- becomes fierce when working on behalf of my child.
It should be noted that if I had birthed this child, she would already have SSI and Medicaid because I could apply for it. If she had stayed in the home of her biological Mother she would have Medicaid and SSI because the hospital social worker would have set it up before discharge to a low income family and 4lb baby with a life-threatening condition. If she was placed into foster care, she would have Medicaid and SSI as well. My daughter is disadvantaged by her adoption despite clear legislation and available programs that offer help for her.
Public Law 96-272—the Adoption Assistance and Child Welfare Act of 1980, the Social Security Act (Title XIX), and,the Adoption and Safe Families Act encourage the adoption of special needs children and attempt to remove the financial disincentives to adopting babies like my daughter. Financial disincentives that scared off 3 perspective families who were matched with Cataleya before we were. Cataleya is exactly the kind of child these programs were made for. The cost for her care is going to easily be a million dollars by the time she is 21. No family- through adoption or blood- would be able to pay out of pocket for her care, nor would they have to with the federal and state funding available for secondary insurance for disabled children.
Social Worker of Disappointment has asked me why we "need" Medicaid for Cataleya and has asked if we are unable to cover her care on our own. We are not pursuing these programs because we "need" anything. We are pursuing these programs because they are beneficial to our daughter, and she qualifies for them.
All of my footwork has led to the same answer: The placing agency needs to apply for SSI (Federal IV-E subsidy) for Cataleya prior to our filing for finalization, which my attorney will need to receive the appropriate documents for.
Cataleya was placed as a 4lb premature infant with half a heart and a missing chromosome. She will need at least 3 open heart surgeries to survive her condition. It is unclear if Cataleya will ever live independently and at what level of functioning. She is dependent on medical intervention for her sole source of nutrition. She is currently oxygen dependent with congestive heart failure.
That is the state of her case. Please let me know if there is anything more you need from me, and I will certainly be in touch as I press further for this subsidy.
Thank you,
Mama Bear
Mr Lawyer responded, "Wow. That's a good email" LOL! It's the blogger in me.
Sir called me back and said that the Agency of Disappointment wants to help me and he's sorry if I have felt like this is a battle.
Right. We'll see. He's only sorry that I haven't given up, and this is the 1st time he offered to help after I sidestep threatened him at least 3 times in this email.
At least I got all that off my chest and no one will be surprised when I take my campaign up a notch.
I think these agencies treat people like crap because they know that adoptive parents will do anything for their child. They'll pay outrageous fees and tolerate rude employees. They'll never walk away from the deal because there's a baby involved, so the agency has no worries if they don't hold up their end of the bargain. I'm cut from a little different cloth, though. My version of doing anything for my child includes making some enemies if needed - not being forever in their debt for giving me my daughter. Her Mother gave me my daughter, Agency of Disappointment just cashed my check.
