Tuesday, October 1, 2013

Adoption--Where The Systems Have Failed Both Children and Families

Adoption in the media again. Adoption Horror Stories and the Rehoming Stories. 
The Child Exchange.. America's Underground Market for Adopted Children

This time with a big way... Rehoming. Adoptive parents who became so desperate that they resorted to moving their children to another home without going through proper channels.


First I will not condone any of the actions of the parents who put their adoptive children in jeopardy, but I can understand just how desperate they could be.

This blog post is going to be complex, but it is a complex problem that causes parents to give up on their children. I hope this helps to put another spin on it but with research to support my arguments.
Not media hype.

I saw glimpses of this as it was happening over the years and stayed away from any of the discussions and discussion boards on the subject.  A couple of times on other groups the subject came up and I talked about finding the help through the proper channels. Starting with the Mental Health, Adoption Support, their insurance and Medicaid and tried to help some parents find scarce help.


Back in 2000 I wrote a letter in the middle of the night. My thoughts about having to tell my daughter that she was going to have to go back to vary system she came from to find the mental health services she so desperately needed.  I searched and searched and found no hope or help for her.  I tried every door and found that the system was not set up to help parents who found themselves in our situation.

I found the little known secret of failed adoptions.
Adoption Disruption and Dissolution from the Child Welfare Gateway 
Some of those circumstances from lack of knowledge about what it takes and think love is enough. Sometimes it is because of often not disclosed information. Most often it is the lack of proper supports. For those who find themselves with children with severe complex needs, it is a lonely world.

I know that in our own circumstances, we were not allowed to see any of the records and they did not disclose that our children were not general level of care kids. We were promised that none of the group of kids had any needs that would put other children in jeopardy as we had our own children and a medically fragile child to think about.  But we found ourselves with four of them who were in therapeutic foster care and the three seventeen page psychologicals on the kids were never shown us that they were much more needy than we were told. Never-the-less we did not give up even if had been fraud. We had made a promise.

Even more on the tragedy of custody relinquishment to garner Mental Health Services.
Custody Relinquishment from the Bazelon Center for Mental Health Law
Even biological families were forced to put their mentally ill children into the care systems to garner services. But Adoptive Families had to do it to. To return them to the systems to get services suitable to condition and often times residential treatment if one could find one.

Those reports highlighted what I had learned. That systems are not equipped to handle our most complex children and families find themselves struggling to find competent help  that is hard to come by.  One has to exhaust all services and then there are few options. Hospitalizations and residential treatment are hard to come by and often will not except our seriously disturbed children.

I fought hard and did not give up custody and learned to fight for my daughter and her right to family. But most families will not be as lucky as I was. 

Families who have adopted from the foster care system and the worlds child caring institutions. We have no safety net when we find ourselves with children too severe to attach or too damaged to remain in the home safely.  We are vilified for not loving them enough, not caring enough, for throwing away a child. The more of these stories, the harder it is for parents to reach out for help as we are judged, juried, convicted for not loving our children enough or doing enough to help them heal from the ghosts of their pasts.  But it is much more complex than that. 

We need a support system all the way from better training  and support from the adoption agencies, health and mental health care systems, child welfare, schools and communities supports.


We adoptive parents who take on these children, sometimes unknowingly are Parenting Complex Children.  Complex...

Some once told me that they are Genetically loaded (they inherit the parents genetic predisposition). There is actually a study going on to see if prenatal alcohol exposure changes genetic structures.

Many will be prenatally exposed. A parents substance abuse issues often put these children into the care of the states and countries. A new study confirms what we parents have known for awhile.
Fetal Alcohol Common in Adopted and Foster Kids   
Neurobehavioral disorder associated with prenatal alcohol exposure. They look normal but can't do normal and normal parenting strategies do not work.

Children who face poverty, neglect and abuse can have neurocognitive issues. Their brains changed by their earlier experiences.
Neurocognitive Impacts for Children of Poverty and Neglect from the American Psychological Association.

Most will have at least some mental health issues of some sort from their trauma they have face. The majority are milder or moderate, but some can be severe. For older child adoptions we need to expect Post traumatic stress disorders. Trust issues, and Attachment Disturbances. Why wouldn't they?
They are removed from the only people they knew, put in institutional settings, or disrupted placements.
Often kids act out their stress and those behaviors can cause multiple placements. The child also learns that nothing is permanent and if you are bad enough, you move on and you don't need to attach and trust.

Parents have answered the call to give children homes, not just from the worlds institutions but from the foster care system in our own country. Many parents go through the trainings and say what they can and can't deal with. But often times the problems will not appear until later when the child can't hit their developmental milestones that it will become apparent or puberty hits.  I remembered reading early on a statistics of adoption disruptions and dissolutions.
Adoption Statistics: Disruption and Dissolution from Adoption.com.

This not a new problem and these are not new numbers. This article written long before the push to move children from foster care into adoptive homes.

We when adopt the children, we make promises to care for them and help them to the best of our abilities. But for some parents, they find themselves with a child that nothing seems to help. Sometimes the more you love them, the more you try to care for them, or parent them. The worse it becomes.  Adoptive parents reach for therapists, books, strategies and anything they can grasp for and often times the worse the situation gets.  I remember the conflicting advice I got from the five different treating professionals in the differing spheres of my sibling set of 5. The advice from one conflicted with the advice of another, and learned to trust my own intuition and fire the ones that were worsening my children's conditions.  The Reactive Attachment Therapies do not work well for kids prenatally exposed with alcohol. They actually worsen them. Then the schools with their behavior modifications that do not work with FASD and then the triangulation of the child pitting unattached people against the caregivers. It is a set up for Adoptive Parent Burn Out and a child in danger of blowing out of a home.

Parents are finding themselves having to run residential treatment facilities without any training or support. I have seen adoptive parents/kinship caregivers have to manage kids that have been released from psychiatric hospitals because they could not be managed there. Thrown out of schools for misbehavior's and left to function solo. All the while trying to be on guard 24/7 to protect the child, the other children and even themselves from catastrophe.

The failures of the mental health system in our country for children are written.
America's Failing Mental Health System, America's Struggle to Find Quality Care

But for the complex children from the care system, they are stuck in a place where the care systems and mental health clash. They are always the others responsibility.  For those who bring in kids from other countries they are in a No Man's Land and often on their own.

I have added to this piece a chart.  My favorite with sharing just how complex these children can be. Overlapping Characteristics.  I once asked a person in power in the state mental health system. Where is the evidence based practice for my children?  He didn't answer, except with the statement you are?

What I learned is that I had to trust my intuition, leave no stone unturned, I had to fight for my daughter, but also know that I had to keep everyone safe. 
                                          Overlapping Characteristics Download PDF


But the systems of help in our country are failure based. Not preventative. The medical system can diagnose the prenatal exposures, but can help us understand the cause. The Children's Mental Health system is not the right place for those prenatally exposed to alcohol but often can help those with the complexities of abuse and neglect issues.  But as children mirror the behaviors of others others, these children learn from their peers and those behaviors often worsen in the home. But the lack of competent support for those from the care systems is a challenge.  For my kids the Mental Health system and the groups for those kids actually worsened my kids disorders.  Knock on the door of Adoption Support and often they tell you you have to use your insurance and Medicaid first.  But that is another series of Medicaid stories about that failures for the most vulnerable of children.

But our kids have no coordinated Silo to find support. Many of the children from the care systems are often of normal intelligence, so developmental disabilities services will not help us. Mental Health services are a poor fit and the strategies do not work with children with prenatal brain injuries. Those lucky enough to present as having autistic tendencies may find services under the Autism Umbrella. 

I was told to look for help in places that were not equipped to handle our needs. I was not an abusive parent, I was not a neglectful parent. I had a daughter too dangerous and damaged to live at home. I was ordered by the Community Mental Health System that I had 60 days to relinquish our daughter and to dissolve the adoption or be charged with abandonment. That document came up missing and I had thought to stow a copy hidden where no one would look for it.  Someone told me that when you go public documents burn. 

I had been warned that if we abandoned my daughter in the state hospital, we would face charges and the loss of our other children, not just the adopted sibling set, but our own biological children.  The care system trumps parents say, bring this child home or possibly lose your other children, your professional licenses, and be put on the abuse and neglect registry. It is Least Restrictive Setting that is used to say that ALL children belong in the homes and then it is our fault that we are ill equipped to meet their needs.  Even when someone gets hurt, we need to go against the recommendations from the professionals that we need to have them home to attach.

If you have to place your child into foster care system, the adoptive parents often lose their adoption subsidies if they are lucky enough to have one if you adopted from the US or if you adopted internationally you will be charged with the cost of the child's care.  I have even seen where an adoptive parent was charged and they took not only the child's adoption subsidy but the adopted siblings subsidy as well and handed the adoptive parent the bill from the state and put liens on the parents home. The same state that adopted the child to the couple and the agency hid the records.  Adoptive parents are often charged with paying for the court fees to get help from the justice system when the Child Welfare and Mental Health Services fail. Too many adoptive parents face calling the police as the option of last resort. Followed by the knock on the door from the Child Protective Service Workers.

No wonder why parents take into desperate measures to find support, the wrong way. Because has anyone tried to Navigate the MAZE to find help for those most vulnerable of children who are the small percentages of kids whose needs are great. Some of us who find ourselves with a child with intense needs, we will get secondary trauma not just for the parent, but the siblings as well.
PTSD in Parents of Children with RAD

We are held accountable for the failures of the Child Welfare, Adoption and Child Mental Health Systems, Medicaid, Insurance and Schools to have a Continuum of Care and a Safety Net.  and it is time for all of us to stand up for finding Post adoption support services and a continuum of care for the  the adoptive children and families so they can honor the promises. For those of us who have adopted from the United States Foster Care System we need not just a check, we need real help and not be judged and serviced by the child protective services the same care system that our kids came from.

We need a post adoption program and laws that will protect our families from the catastrophic costs of having a child with severe issues.

We need the media to focus not just about the adoption horror stories, but real stories of real families fighting the odds to try to help very complex fragile children.  We need evidence based adoption conscious services and supports in all the service sectors and those parents will not resort to give up on their adoptive children.  And for those children who do not fit into the adoptive home, we need laws that no do penalize the family for trying to find healing for the child and for everyone involved.  It should not be seen as failure, but just another place to meet the needs of the child. 

We did not give up on my daughter, or her siblings, but we did pay a price. Many an adoptive parent said that they were more traumatized not by trying to help their child.  The trauma of the lack of support and navigating the systems if often times are much more damaging than our circumstances.

Postscript: My daughter is now 28 and she still has a family to advocate on her behalf and call home to and we have gone on to adopt another little guy with Fetal Alcohol Syndrome plus a host of other problems and he is thriving. We have full disclosure, we will do whatever and find whatever it takes to give him the love and supports to thrive. But we also know that we cannot heal his prenatal brain damage but love him and nuture him through his challenges.



A followup to our story written for the North American Council for Adoptable Children in 2003

Monday, September 9, 2013

The Face of Fetal Alcohol Syndrome. The Innocent Victim.

This is McKellan. He has Fetal Alcohol Syndrome. He is an Innocent Victim of Prenatal Alcohol Exposure.

Today is National Fetal Alcohol Syndrome Awareness Day. In many places around the country bells will ring at 9:09 am. This day was chosen for the 9th month, the 9th day, and the hour of the bells 9:09 to represent the length of pregnancy. Please do not drink when your pregnant.. You will save your child a LIFETIME of struggling and hardship!

Sunday, September 8, 2013

Mackie's Ringing The Bells for FASD Awareness 9-9-13



McKellan has Fetal Alcohol Syndrome.

He was one of in 40,000 who was born with Fetal Alcohol
Syndrome in the United States each year.

The estimated lifetime cost for someone born the FAS will exceed
$2 million dollars.

Mackie is an Innocent Victim of Prenatal Alcohol Exposure.

Zero For Nine Months

For More About FASD Read: The Innocents, FASD, Victims

Monday, August 26, 2013

My Facebook Favorite and I Designed My Shirt


I found this picture on Facebook and it is so true.  Parents who have complex kids have to do their searching for answers. It is just part of the job description.  Parents with Special Needs kids know their childrens needs. As the internet has opened the doors, parents are becoming the experts in their  children's disorders. The online support forums are full of knowledge and interventions and we share our children's lessons that others may find answers. Google scholar, search engines, we read, we research and we learn to read medical jargon.


Order Here

Tonight I searched out a site for designing my own t-shirt or sweatshirt. I will wear it with pride.

Sunday, August 25, 2013

The ABC's of Living with My Noonan Syndrome by Becca Yurcek



The ABC's of Living with My Noonan Syndrome
by Becca Yurcek

Anxiety
Bruising and Bleeding
Contractures
Drinking--- It hurts and I choke and Dr. Sheirlie lectures me.
Eating and Esophagus-- It hurts and it gets stuck.
Failing-- Schools and some Doctors don't get it.
Gagging-- gagging and wretching that hurts my chest and ribs
Heart Racing and Headaches-- which I wish would go away
Intense Pain
Joint Pain
Keeping Weight Up Challenge
Lymphedema Is painful and keeps me sitting my feet up
Migraines
Nissen falling apart and food gets stuck on top of it
Osteoporosis
Pain
Questions no one can answer
Respiratory issues Sleeping-- too much or have trouble sleeping
Teeth I wish I could smile because my teeth are so awlful
Ultrasound on my elbows and hip.
Vitamins for my anemia, folate, Vitamin B12, C and D deficiencies.
Walking I can't, I need my chair
Xanax for my anxiety
Yo Yo, the ups and downs of my days
Zofran for my nausea and wretching. My favorite Medicine.
Copyright 8-22-2013

The ABC's of School With Noonan Syndrome

                   The ABC's of School With Noonan Syndrome
                   By Becca Yurcek

                   Advocate and Attention Problems
                   Behavior = Language
                   Caring Teachers and Friends
                   Dyslexia and Dysgraphia
                   Expressive Language and Executive Function Deficits
                   Fatigue and Fine Motor Problems
                   Gym Class Needs Modification
                   Hypotonia and Hyperacusis
                   IEP and Illness
                   Just Want To Be Included
                   Kids Learn Differently
                   Learning Disorders and Limit Writing
                   Modified Assignments and Maturity Delays
                   Not Going = Not Meeting The Needs
                   Overstimulating Environments
                   Pain Interferes with Learning
                   Questions Answered Verbally
                   Resiliency, Rest and Repetition
                   Social Skills, Scribe and Shut Down
                   Technology and Talents
                   Understanding
                   Victim of Bullying Too Often
                   Writing is Difficult
                   Xtraordinary and Xtra Time
                   Yo Yo Ups and Downs of Living with NS
                   Zero Teasing
                   copyright 8-25-2013


 If a child does not learn the way you teach, 
teach them the way they learn. 
 
                                          
                              Advocate, Adjust, Encourage 
                           Educate About Noonan Syndrome

Tuesday, July 23, 2013

Ring Around the Medical System

These past couple of years, I have been playing Ring-A-Round the Medical Beaucrasy.  No matter how hard I try I still keep running in circles. As families we are trying to make sure that we do what we are supposed to do to manage our childrens/adults with disabilites care.  I document, fight, and think I have it problem solved only to find it wasn't fixed or another roadblock happens.

I decided to write my frustrations and document my journey to get Becca help.

Becca told us it hurts to eat and "things" are getting stuck behind her sternum in her esophagus.
  1. Becca says it hurts to eat and things are getting stuck in her esophagus and its sitting on top of her Nissen fundoplication.
  2. I take her to her primary care doctor who puts in a referral for a GI doctor.
  3. Called several in network GI providers. 
  4. Checked on a Pediatric GI due to Becca's stature.  Denied to see because she is over l8.
  5. Referral to out of network provider. The Doctors office put in a Prior Authorization for Out of Network Referral
  6. Insurance company denied Out of Network GI Doctor.
  7. Appealed insurance company denial.
  8. Insurance company approved.
  9. The Out of Network GI triage  called said they will decide if they want to see her. They will let me know in 3 to 4 weeks.
  10. Out of Network GI triage said they did not feel she needed to be seen. She does not have a GI History is their reasoning. (Becca saw GI for 16 years and had a GI, 2 GI surgeries etc. and l7 years of a gastrostomy tube).
  11. Insurance company Out of Network authorization ran out.
  12. Reapplied for Prior Authorization Out of Network appointment.
  13. Resubmitted information to Out of Network GI.
  14. Insurance company denied the Prior Authorization.
  15. Wrote a letter and got the insurance company Case Manager involved.
  16. Got approval from insurance company to see Out of Network GI.
  17. Got a phone call that Becca was scheduled for a scope the next week (without seeing the doctor?)
  18. Called the GI office and asked if it is normal to not see the doctor before a procedure.
  19. They explained that the Doctor felt this is what needed to be done and they don't always see the 
  20. patient first.  I explained that Becca has complex needs including heart problems and  bleeding  disorders and they need to plan to do anything. They haven't even talked to her or us about the problem.
  21. The Office called to say they needed proof that our insurance company approved the out of network.
  22. Faxed the out of network approval out.
  23. Called to double check so can make the appointment.
  24. Had to resubmit to see the doctor at the GI triage
  25. GI triage had to talk to Becca's primary care provider to see if she still needed to be seen as it was over a year ago.
  26. Primary Care Doctor's office resubmitted paperwork
  27. Triage Called and scheduled the appointment
  28. Called the Health Insurance Company Case Manager to see if the referral is still good. 
  29. Resubmit the changed Out of Network Prior Authorization date.
  30. Got the Prior Authorization Approval Letter and called to make an appointment with GI triage.
  31. Waited 2 weeks for returned call and got an appointment.
  32. Got a phone call from reimbursement and had to fax in the Insurance Company approval.
  33. Drove in for the appointment 2.5 hours from home. Arrived to find out they had called to move the appointment an hour up and we were now late. (I was already gone when they moved it up). They saw us during the lunch hour and the Doctor kept using foul language.
  34. Doctor says she needs a GI scope and needed pre-surgery physical. GI ordered a swallow study.
  35. Took Becca to see her Primary Care Doctor for physical and gave them the order for the swallow study.
  36. Doctor made recommendations based on bleeding information from her Hematologist in MI.
  37. Doctor arranged the swallow study and we got it done.
  38. Scheduling called and said that I needed to go to our In-network Hospital for the treatment via IV for the procedure and then be admitted to the other hospital for the scope. I asked why they couldn't just bill Medicaid for the medications etc. They said that if she had Medicaid only they would have to take the Medicaid reimbursement, but not if we had insurance they wouldn't.
    Coordinating two hospitals for the procedure with 1 hour administration of IV antibiotics and platelet transfusions was not feasible
  39. Doctor called up to the GI to give recommendations on why you cannot go back her stomach as her risk of duodenal hematoma because of her platelet defect. The doctor refused to admit her overnight per recommendations.
  40. Met with Primary Care for Becca's monthly visit and we fired the Out of Network GI.
  41. Asked Becca's Adult Congenital Cardiologist in another major hospital system about who should see her.
  42. Took recommendations to her primary care doctor. Put in the referral to the Pediatric GI.
  43. Put in the Out of Network Prior Authorization for the Pediatric GI.
  44. The insurance company miraculously approved it.
  45. Put in a referral for the Hematologist who was recommended by Becca's Cardiologist. Saying that Becca needed a medical home with specialists who were in the same system to coordinate her complexities.
  46. Submitted the Hematology Referral.  Prior Authorization for an Out of Network Approval to insurance
  47. Pediatric GI would not see her due to her age and scheduled her with an Adult GI.
  48. Doctors office put in another Out of Network Prior Authorization for the GI in a different department in the major hospital.
  49. Insurance company now denied the Prior Authorization.
  50. Called the Insurance Company Case Manager but Becca's worker had retired. Had to fill her in on all the troubles we were having with insurance. Told to resubmit and attach the old approval with a letter and the documents on why she needs this.
  51. Prior Authorization was approved.
  52. Primary Care Clinic called to say it was approved and they made the appointment.
  53. Becca finally saw the Adult GI. He ordered us to come back for an Upper GI.
  54. Called the clinic to put in a referral and pull the paperwork for the Out of Network Upper GI.
  55. Insurance company denied. But with having the denial, the Out of Network Hospital took the Medicaid payment.
  56. Test was done.
  57. GI Nurse Practioner called to say they found that Becca has a Paraesophageal Hernia and they need to Scope her. But not until she is given clearance from Cardiology and Hematology with their recommendations for treatment.
  58. Resubmitted for the Hematology Prior Authorization at the the GI and Becca's heart doctors hospital. 
  59. Insurance company denied the Out of Network Hematology consult. Saying she can see in network people. But the hospitals in their network cannot manage her care.
  60. Called the Hematologist who the insurance company wanted her to see. His office told us that he was not wanting to continue as her physician as Becca wanted a female.
  61. Asked for an Out of Network Referral to the Recommended by her Cardiologist in the same hospital system as the current GI.
  62. Clinic put in a Prior Authorization to the insurance company for the Out of Network Hematologist.
  63. Insurance Company Denied.
  64. Put in an Out of Network Referral to a Out of Network Hematologist who saw Becca 1 time and never let us go back.
  65. Insurance Company Denied.
  66. Appealed, Denied until I see every Hematologist in the In Network system. Told to go back to the assigned in network Hematologist who did not feel comfortable seeing her.
  67. Made an appointment to the First In-Network Hematologist, who was not comfortable with Becca. Argued with him about Becca's bleeding disorder. He says she has "Normal numbers of Platelets" and nothing should be a problem. I handed him the records from the Out of Network Specialists recommendations and her prior Hematologists. Explained that her Platelets do not work and he told me I was wrong. I asked for him to arrange a second opinion and left in tears while Becca made the appointment.
  68. Saw the New In-Network Hematologist who got a stack of Hematology records. She had begun to talk about the First In-Network Hematologists recommendation.  I showed her the Platelet Studies from the UW of Michigan before we moved. She then said she was not sure she could handle our daughter's case but wanted to talk with some of her collegues from her training at the UW (Where Becca went once) about bleeding findings in Noonan Syndrome.
  69. Waited 6 weeks and then called back to find out if the Doctor was going to be Becca's doctor or not.
  70. Doctor called a week later and said that the colleague wanted more testing.
  71. Took Becca for more testing.
  72. Got the results from Becca's Primary Care Provider which now adds 3 abnormal clotting factors.
  73. Called the Hematologist to see if she wants to see Becca or go over the results and whether she wants to be Becca's Hematologist.
  74. Still no returned phone call to Mom.
  75. Talked to Primary Care to find out what to do with Hematology at an appointment for Becca.
  76. Primary Care Provider called and talked to the Hematologist who says that Becca will need Fresh Frozen Plasma, Clotting Factors, DDAVP, Platelets for the procedure and then Amicar every 4 to 6 hours for several days following.
  77. Put in a new Prior Authorization for an Out of Network Referral for GI.
  78. Put in a Prior Authorization for the Out of Network Referral with the insurance company.
  79. Insurance Company Denied.
  80. Put in a new Prior Authorization for the Scope.
  81. Put in the Insurance Company Prior Authorization for Out of Network
  82. Waiting.
  83. Received a call from the Hospital GI lab and said that they were reviewing the Hematology notes and will call when they get it all coordinated.
  84. Week later received a call from the Hospital GI lab scheduling saying that they will be following the recommendations of Dr. A......  the GI who was fired.  They had been faxed the new Hematologists name and it is in the Epic medical on line system with her hematological diagnoses.   I explained that we fired the doctor and what I was told. Reading her the notes that Becca's primary care doctor had told me would be necessary.
  85. The GI Nurse Practioner called and they tell me that they need me to get the New Out of their network Hematologist to fax up the cover page, the detailed recommendations, the diagnoses and all her chart notes from Hematology. I asked just from the second or the records from our two prior hemologists.  All of it.
  86. Then she tells me that they will decide at that time whether they will do the scope because she does not have a hematologist in their network.
  87. This Mom has had enough, and cries.
  88. Becca's primary care provider a family friend called tonight and I explained.
  89. Tomorrow we call Hematologists office to get them to fax in the required paperwork.
  90. Then wait.
  91. Becca's Dad's clinic was bought out, on 10-1 we get a new insurance company and start all over with who they see, and learn a new process and hopefully it is better than our managed care insurance company.
  92.  To Be Continued ?????
  93. After 3.5 years of us arguing with Miss Becca to get her to eat despite the pain maybe they will finally get to someone to figure out what to do to help her pain with eating and her esophageal hernia.