I am writing in response to the show on the Ohio couple. Thousands of adoptive parents across the United States are facing the same problems.
Over and over you asked-what should parents do? Most of them are already getting counseling and other services and despite intensive in-home and community based interventions, the child continues to escalate to an unsafe level of behavior, risking the lives of siblings and parents.
These are the children of trauma--children who have been severely neglected or abused, often as toddlers or infants and it affects their brain development at a crucial stage. In particular, it effects the child's social and emotional development.
It is generally when a child needs residential care that families are unable to access treatment. In the case of domestic adoptions, children are given Medicaid as part of the adoption subsidy under the Adoption & Safe Families Act (ASFA). As such, they are legally entitled to medically necessary treatment under federal law; however, states are failing to implement treatment for these children at the state level. In effect, the federal government is awarding them permanency, but the states are taking their permanency away when they force an involuntary relinquishment after failing to implement federal law. The federal govt. gives and the states take away.
When families reach the limits to provide safe and appropriate care, the state encourages placing them into foster care as a financial convenience. It allows them to draw down federal funds for treatment. Thus, as an adoptive child, he cannot access funding, but as a foster child he can.
Now, here are the solutions you asked for. The federal government needs to force states to comply with the EPSDT provision of Medicaid (Early, Periodic, Screening, Diagnostic, and Treatment) which is an automatic entitlement from the Medicaid awarded to them as part of the adoption to help preserve their permanency.
Second, "money follows the child." If a state can draw down federal funds for a foster child, they should be able to draw down federal funds for the same child as an adoptive child. This would provide treatment while preserving the child's permanency and keep everyone safe as well. These are the laws that could have helped your caller, Sage, or my family, or thousands of others. They may have saved the Ohio family. These are the laws we need passed.
My good friend found out she and her husband were expecting, starling because they were young newlyweds. After the initial shock wore off they became excited (and terrified). to meet their baby. This boy was to be the first grandchild on both sides, a very exciting time for everyone. Then he was born; huge, gorgeous eyes that stole your heart, everything s tiny, so fragile. After a few months he had a seizure that eventually turned into daily seizures that often occurred multiple times a day. He went from an interactive, happy baby making daily strides to a somber baby. He spent so much of his short life in the hospital, but answers were varied and never stuck to this situation .
That is until they discovered their sweet baby boy was suffering from a disease call infantile spams disorder. This caused him to experience multiple seizures (up to 10) per day, this left him a sad boy whose engaging personality was being suppressed by the medications to prevent the seizures. This was not cured quickly at Primary Children's Hospital because it is rare and there is little research that has been done.
This new family was devastated, and Cretia (the mama) is not into sharing her personal experiences. However, she created a blog (http://spazfamily.blogspot.com/2013/11/infantile-spasms-awareness-fundraiser.html?spref=fb) to cope and spread awareness for this disorder. Most new parents would have become depressed over their long journey with this disease, but Cretia and Jake (the papa) have been advocate for the cause ever since. Baby Bridger is doing so well, but will be on medications for a long time. Due to their experience in dealing with the unknown and coping with a baby they could not "fix" they have been raising money to donate to the research of this disease and spread awareness.
On December 7th from 3pm to 9pm at the Deseret Peak Indoor Arena located at 2930 West Highway 112 Toole, UT there will be a super fun luau with several vendor booth, a bounce house, dunk tank, raffle, silent auction, authentic singing/dancing/fire and knife show, authentic food, and much more!! $5 entry gets dinner and all the fun you can take. If there is any way you can mention this on your show or let Cretia or I come and take 30 seconds of your time we will be eternally grateful. I love you guys and your show, keep up the great work!!