I have learned the very hard way that I had to fight for services and treatments for my children.
With our daughter Becca who was born with Noonan Syndrome I had to learn the complex world of catastrophic medical needs. Fighting for her survival and the bare necessities of even the basic necessities for our family. We had to rely on the public system for her medical care when our two insurance companies had refused to pay for her over a million dollars in medical bills. We were blessed to be a state that helped us find the help that Becca needed. We promised to pay it forward.
Over the years I learned that our fight for Becca was not just for us. I have found myself learning way too much, advocating and writing at very high levels. I learned that I had to become an expert in navigating a very complex health care system.
When we adopted our daughter Shay and her siblings, we were promised Medicaid and supports to help us meet their complex needs from their prenatal exposures and history of abuse and neglect that had landed them into the foster care system. I got to firsthand learn the broken system of Children's Mental Health care and breakdown between the Foster/Adoption Care systems. I found the lack of evidence based services and our family desperate for help for some very complex traumatized children. Our insurance company paid for had limits. The Medicaid system said our kids were from another state and that state was responsible for my daughter's recommended out of home placement.
The system gave me 60 days to relinquish her back to the foster care system. I reached out to lawyers and no one could help me. I had made a promise to my daughter that I would give up on her.
I wrote in wee hours of the night my thoughts about having to tell my daughter, that she would not only lose her family, but her biological brothers and sisters who were now our children. I emailed that letter to high places and less than three hours later, my email was answered by Hilliary Clinton's secretary saying someone would look into it. Empowered, I began my long road to fighting for Shay.
Email after email, letters from very high places, but in the end after many months of learning and reaching dead ends, I found my daughter had rights under Medicaid. I read and highlighted the books I found on the Bazelon Center for Mental Health Law. I learned to read the law jargon and would file for a hearing for my daughters recommended residential care. I used backdoor relationships and people who were placed in my life to garner help from our states mandated Protection and Advocacy advocates and lawyers to back me up. I had written my request for the Appeals Hearing and we went back and forth on arguing what was in her best interest. An independent second opinion supported our family and her providers stance and after 2 years my daughter being stuck in the state psychiatric hospital, our Community Mental Health system who approved or denied her Medicaid benefits approved her placement, only 18 hours before going in front of the State Fair Hearing Judge.
No one knew how to help me, I found that the state of Michigan, didn't have written into their state plan the federal EPDST mandate. Things changed, kids under Medicaid had rights to treatment if medically necessary. The story of the fight for Shay would spread and a Mom beat the system using my daughter's right to care.
I learned way too much and had to become an expert for my children. In 2006, would chronicle our story in my long procrastinated memoir. Taking me to places I did not want to return. It was just too much, but to help others I ventured forward.
We moved to Wisconsin, my kids grown. I gave up my fighting and advocating for a simple life in the country where my husband practices medicine. The kids grown, two of the girls have entered the adult systems and I continue to learn the complex medical and developmental disabilities world. Becca has both Noonan Syndrome and Autism and Detamara Fetal Alcohol Syndrome and Autism. We had time on our hands and opened the doors once again to foster care and adoption.
Our little Mackie entered our lives when he was l7 months old fragile and tiny. The skills we had garnered with Becca would help us help our little guy. Born and abandoned, prenatally exposed to alcohol and other drugs and premature he needed our help and his needs were promised to be met by the state's Medicaid Plan. I would face denials for his medical equipment, denials for his expensive formula, but his medical bills were paid for. We would use his foster care subsidy to buy what we were promised by the state. With no social worker or parent to appeal, we were forced to buy them ourselves or be in danger of medical neglect for not having the formula or equipment that he needed.
Fortunately for us, we had the resources to pay for it. I wonder how many of the foster parents who have children who are medically fragile went without the equipment, medications or therapies that the children needed. I learned that not only foster parents, but special needs Children on Medicaid in our state faced huge delays and often were denied the treatments, equipment and medications ordered by their physicians.
After is adoption, our state adoption worker asked whether we wanted to add him to our insurance plan. Many parents didn't due to the catastrophic needs of these special kiddos. I knew that there is a two class Medical care system, and with Medicaid paying poorly and doctors waiting sometimes too long for payments from seeing both sides of the care system, I chose to put him on our plan. He would be able to get the best care. Even after adoption, we found that our insurance had huge holes in paying for some of Mac's needs. We continued to pay for his formula that was not covered by WIC, and equipment. Medicaid would just keep asking for more and more information and just before a decision was due, it would be thrown back to square one for not meeting a timeline or not being able to meet a threshold of proving the need. No decision means no rights to go to fair hearing I was told.
I would find and advocate for the best for Mackie. He got early intervention from the Birth to three program. We saw that though he was slowly making gains, he began to lose some of the skills he had previously. He was sent to genetics where he was discovered to have Fetal Alcohol Syndrome, microcephaly, and a severe failure to thrive. He wouldn't eat. Appointments and more appointments and patience and when he lost his two word sentences even though he couldn't yet sit up, he was sent for an evaluation for Autism. The neuropsychologist at 2 said he had FAS and he looked at people and didn't do any assessments. Heading to the rehab doctor she saw that he was very different than before and sent him for a second opinion evaluation at the renowned U of WI Waismann Center.
Mackie was given evidence based testing and found to have a score in the moderate to severe level and he was given an Autism Diagnosis. In her report she wrote:
"Impressions: Mc is a 2 year 10 month-old little boy who has significant global developmental delays and an autism spectrum disorder secondary to prenatal alcohol exposure and probably family history. His microcephaly and small size are secondary to the prenatal alcohol exposure.
There are 2 levels of developmental description. On one level, we try to figure out the best "descriptors" for a child's developmental profile. For example, Mac has global developmental delays and an autism spectrum disorder. These descriptions of his development. The diagnosis of fetal alcohol syndrome, and possibly familial factors, are the reasons for the delays. In other words, Mac has developmental delays because of his exposure to alcohol prenatally. These are not either/or conditions. A child can have an autism spectrum disorder and real alcohol syndrome. One is the description, and one is the cause."
In closing in the report:
Mac's score on the ADOS-2 toddler module, his total score was 27, which is the moderate to severe level of concern. There are some questions to be resolved regarding Mother's application for the autism waiver. Biological father could not be found to terminate parental rights and mother had already abandoned him, and this has continued to delay Mac's adoption by the Yurcek family.
It is urgent that a placement decision be made. Now that mac has a diagnosis of autism, he will benefit from early intensive behavioral intervention; however he will not be eligible for that service for about l8 months because of the long waiting list at this date. Any delay from the indeterminate guardianship or difficultly finding Dad to sign the TPR puts Mac at greater risk of not receiving intervention for his autism in a timely way. Early intensive behavioral intervention is effective in moderating the course of autism for children who are able to receive it. We should try our best to minimize any delay in getting Mac access to this program. It is his best chance to maximize his developmental potential. This is medically urgent issue. writing 2/13/2013.
With him being in foster care, his care was delayed. I called to put him on the waiting list only to be told I did not have the right to do so. His social worker wouldn't advocate for his care either.
We would push our efforts into getting him adopted and then we would be able to find his care.
I found that children with autism in Wisconsin who have insurance had a mandate to care. I knew once adopted we could begin the process to get him the Early Intensive Services he needed.
We adopted Mac on April 16, 2013 and he was now legally ours. We were told to put him on the Autism Waiver Waiting list and I made the phone call to do so. The worker told me that we had our insurance coverage and we didn't qualify to put him on the state waiting list. He had Medicaid and we had to use that to back up our insurance. I resubmitted to the Autism state waiver as I learned that I had been inappropriately denied. He was now waiting for our back up coverage for his Medicaid autism services. But now the waiting list was over 2.5 years long. The state rule for autism is that a child could not have had two years of services before the slot of the waiver and by the time Mackie's name was to the top of the list he would be ineligible. Leaving us to pay once again for what Medicaid should have.
After trying to garner coverage and research on where to go we finally got a referral to a provider who was highly recommended. Intake and then my husband's employer sold the clinic just as Mac was authorized for services. Now another 4 month delay while waiting for our new insurance information and then authorization, Mackie would finally at long last start services. February of 2014 Mackie started Early Intensive Behavorial Intervention, ABA therapy through the Wisconsin Early Autism Project.
I learned more and more about the Medicaid Waiver Waiting List, the fact that children with Autism who have Medicaid would wait and wait and kids from families with insurance didn't. I knew that while I could afford Mackie's Autism services, there were many families who couldn't. They didn't have the benefit of the neuropsychological and developmental services that my insurance pays for. Those lucky enough to get diagnosed who are poor or on Medicaid for being disabled often wouldn't be found to have autism until age 3 or 4 and with the two year plus wait and the few months that it takes to get services rolling may be already 5 or 6 before they could begin the 3 years of intensive help.
I reached out to the State, I had been fighting to get Mackie's waiver slot and understand how the program worked for an adopted child. I found that I would be asked to pay 41% of the costs and also pay for case management services which was 41% of the costs of the services. There were questions if we had to pay 41% of what our insurance company paid and every report and service needed to be dually authorized and looked at even when we hit our maximum insurance ceiling and they paid 100%. Mackie already had Medicaid per federal entitlement per our adoption contract with the state and they were going to charge us to buy in? The state's rule and county's understanding of the rule were at odds. Just when I had all but given up, a Bulletin from CMS I had the ammunition to fight on.
I had no choice but to go to the state courts to sort out the complexities of what to do with Mackie's Autism care. I was just a Mom a long time ago and I had learned that an ordinary warrior Mom can win against the odds.
I filed for a fair hearing in August of 2014. With submitting a 2 inch binder of the EPDST Guidance to States, the Florida Rulings, Mackie's records. The story here becomes long, at first the Fair Hearing Division says that we had no standing to go to hearing, but in the end, we received a Hearing date. The state's attorney said I had not submitted for a Prior Authorization, but there was no system set up for prior authorizing a service that required a wait list. The state's attorney even went so far to say that I had not had McKellan seen by a physician since February 2012, even though the binders included numerous documentation of services and visits otherwise including his two visits to the Waismann Center where he was diagnosed with Autism from February 2013.
Faxing documents, submitting the evidence binder to the states attorney we would go to hearing. The day before the hearing I would receive a letter saying I had the right to prior authorize his ABA therapy to the state. Settling with the hearing judge and putting on the record, that I could prior authorize his services, I reached out to the WEAP provider.
The billing and prior authorization service for something that had never been done put us in the no-man's land of trying to do something never been done. I received a letter which I gave to the provider and we began the lengthy process. Letter after letter, more information needed and more information needed. The state said he did not have autism as the early provider had claimed. She had not done evidence based testing and the state refuted the renowned provider who did the evidence based testing. Then the state claimed he was too low functioning to benefit. They demanded psychological testing and then claimed it was not adequate. Demanding an independent second opinion from an outside provider. In the meantime, I had helped a couple of parents in a couple of other states to prevail using the same argument. Other states were announcing their new Autism services. But I was being told my child was not autistic, he was just Fetal Alcohol Syndrome. He was too developmentally delayed to learn. What did they know of Mackie? They could not see the progress, the programming did not have base measurements, they did not have room for his processing delays in the programming. He could not do it under the 7 second rule. He requires 12 to 15. He had been since diagnosed with Visual differences and the school was helping us understand his visual needs.
He had co-morbid conditions and his fine motor skills held him back but he had made 26 months of developmental gains in 12 months since starting services despite the documentation.
I received a letter that I needed to get Mac a neuropsychological testing at state's expense with the first provider who said he didn't have autism. From my history and knowledge I knew that that was not an independent opinion. I wrote a letter to the state and then agreed to the assessment citing that if it did not support Waismann Center's assessment that I wanted an outside opinion from out of state.
I took Mac out of therapy for the day and headed to Madison for the appointment, only to learn they had no record of an appointment. The next day was the deadline for us to submit all information needed by the state to continue the prior authorization. I had sent off a certified letter the day before asking for an extension of the timeline as we were following through with the demands the state had place on us for Mac.
Phone call after phone call to the state unanswered. I could not follow through on getting the required neuropsychological testing. I called the provider and they knew nothing of the states offer for payment. Now I had to get a private insurance authorization and agree to pay the nearly $5000 for an assessment, and it was now a four month wait after approval. This is not what the state had said in it's letter. I called and no response. I gathered the records from WEAP for an appeal for the states lack of making a decision in a timely manner. I found a line in the EPDST guide to states that the state cannot use a delay a decision due to a PA request. It was now months later since beginning the process. I wrote a letter to ask for a hearing on May 28, 2015 for a hearing on the grounds of delay in a decision, the failure of the state to implement EPDST for McKellan's ABA therapy and the a decision for a truly independent second opinion.
Mackie's WEAP therapist and I both received phone calls asking important questions and wanting more information and for the first time I was allowed to talk to someone about my son's needs and the timeline for services. I advocated and together we worked out a solution. June 23, 2015 I received a letter from the State of Wisconsin and the Office of the Inspector General approving his services.
The fight was over, the state was working on figuring out how to implement the Bulletin from CMS from July 2014 about Autism services under Medicaid. I knew that I had the skills to fight for Mackie, but most importantly for those who could not fight for themselves.
WEAP is working on the new demands on measurements and baseline testing and justifications and measurements required by the state. The system needs to get ready as the wait list will soon close and those children will be moving into therapies and services.
Yesterday at long last, I found the announcement from the State of Wisconsin about Behavioral Treatment and Services for Children with Autism and the 2016: A New Behavioral Treatment Benefit Under Wisconsin Medicaid and Other ForwardHealth Programs. No more waiting lists for the children under Medicaid and they have the right to prior authorize treatment. I just hope that the process is smooth and that they do not require the hundreds of pieces of documentation they required of us to keep kids from services. I just praying and hoping that it sees Mac's progress is a testament to just what early intervention can do. Mackie only waited 12 months to start treatment, other children waited and lost out on precious time.
No more will poor children have to wait and not have the chances that kids with insurance in Wisconsin who are covered under the insurance mandate. The gap is narrowed. The next step, to make sure that poor children are identified early and assessed and intensive help given early. The providers will also make assessments for the co-morbid conditions and not just blame everything on behavior, but looking more closely at the root of the behavior and accommodate for success. Schools will be having to coordinate with the schools to optimize success. Paying for services early on has been proven to save money and improve the outcomes for children on the Autism Spectrum. Mackie has made a smooth transition to 4 year old kindergarten, his 26 page IEP and paraprofessional a testament to a school district following through with what he needs. He is thriving and blowing away the professionals. More and more answers are coming, he has been diagnosed with Chorea and we are learning how to accommodate his neurological involuntary movements. But as we always have, we will continue to advocate for our kids needs and fight when necessary.
At the end of the day I saw a post on Facebook, that brought it full circle "You may not understand today, or tomorrow, but eventually God will reveal why you went through everything you did."
For Becca I had no choice, for Shay I had no choice but to fight, for Mackie and this latest fight, it was my choice to use what I knew to help others even if it was against the odds.
Parents fighting for their children can make the impossible happen.
Anny
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