Day 1 More Children are affected by FASDs than peanut allergies and diabetes combined!

Day 1

Statistics suggest that less than 1 out of every 1,000 children meet the diagnostic criteria for Fetal Alcohol Syndrome (FAS)  like Mackie.  But other newer literature puts that number much higher at between 6 to 9 per l,000. 

And that is just FAS.  FAS is the most affected end of the FASD spectrum.  Many on the FASD spectrum will have no visual signs of being affected.  One study suggest that 2.4 to 4.8 percent of children in a midwestern community are affected by FASDs. Another larger scale study came up with a similar picture. Putting the rate of FAS in U.S. school children and some other European countries at 2 to 5 percent.

Source: http://ireta.org/2015/06/08/alcohol-exposure-affects-fetal-brain-development/

Schools have policies to address peanut allergies, school nurses and staff are trained to help children with diabetes which have lesser populations than those affected by FASD.  Where is the training and understanding for those who were born affected by FASDs?

Anny

Article Share: What Lies Beneath Behavior

Article Share:

Article Share:  What Lies Beneath Behavior
                         From Echo Parenting & Education 

While the article focuses on behavior in the classroom the same principles and processes of figuring out what the behavior is telling us in our homes.  When we think it through, we can decipher what our children are trying to communicate and with that we can help find ways to help the child.

Anny

Article Share: Trauma-Informed Support for Children

This morning I found a wonderful article and it's followup  that is a must bookmark resource for parents who are parenting complex children.

Article:  What Do I Do?  Trauma-Informed  Support for Children

Shared from ACEs Connections 

Day 1 Parenting Complex Children and Red Shoes Rock

Day 1 of 90

Today launches the second year of joining up with Red Shoes Rock to raise awareness and educate about Real People and Real Lives that are affected by Fetal Alcohol Syndrome.

Everyday there will be facts, strategies and real life wisdom shared from kids, families and adults who live everyday with Fetal Alcohol Spectrum Disorders.

Anny

#Save Medicaid #Don't Break A Promise

When we adopted our children from the foster care system, we were promised Medicaid to piggy back with our insurance to help defray the costs often not covered by insurance.  

For many special needs adoptions there are federal supports to help us help the children without bankrupting families.  For Special Needs Foster Care Children who were determined disabled by the Social Security Administration they are IV-E eligible.  Which means that the Federal Government has rules in place to help these children find adoptive homes and offered a safety net of support to be able to be in homes and the community which written into the Federal Rules under Title XIX and Title XX which gives them Medicaid and in Child Welfare as a promise of hope and support for a better future. 

It has been a life-line for many special needs adoptive families to be able to get the necessary supports that insurance does not provide and to fill in the gaps.  Adoptive families save the taxpayers with providing insurance, care and support for these vulnerable children and we hope that by providing them love, structure, support and hope they can break the cycle of abuse and neglect they came from.

We are up against the statistics and a CUTS, CAPS, and changes to federal rules puts them at risk.

Children's mental health and therapies are often not covered well by insurance. If you are lucky enough to live in a state where mental health parity has forced insurance company's to pay better.  There is a shortage of Child psychiatrists and we are just beginning to finally understand the effects of Trauma on children and what prenatal exposures to alcohol and other toxins.  These children are struggling we owe it to them to have hope. We are in our infancy of knowing how to  j to help these children and Medicaid and community supports are needed because of insurance exclusions and gaps.

For children with developmental and physical issues, insurance often denies many of the therapies, equipment, specialized formulas and other things these complex kids need and having Medicaid is a must for special needs adoptive families. But the out of pocket expenses and deductibles can be expensive.  

With all the talk of block granting Medicaid and letting the states decide and ration the care along with per person caps and possible loss of any protections for these vulnerable children.

I wonder what the future will hold for those who were promised Medicaid and appeals rights under EPDST for our kids.  Need to know what EPDST is?

Right now, we struggle to get many of Mac's equipment funded under Medicaid already here in Wisconsin, what will happen when the budgets become even more stressed.

Mac's wheelchair was denied by Medicaid. We finally got approval late last year from insurance and we had already met his maximum out of pocket insurance criteria of $6, 500 per year.  Fortunately our insurance company saw the need and funded it despite Medicaid saying it was not medically necessary.

Mac's potty seat that has allowed him to use a toilet denied by insurance and Medicaid.  Mac's bath seat, denied by insurance and Medicaid. Mac's formula denied for years as a foster child and once adopted, and with help from high up was I finally able to get it funded. His Physical therapy denied.  He did not need it, despite his involuntary movement disorders and being unsafe to navigate in the greater community.  Has anyone seen Mac walk lately?  Needed genetic testing denied by insurance and Medicaid does not cover it.  I am currently waiting quotes for how much this will run us. I am told it will run anywhere from $2,000 to $5,000 out of pocket or more.

Now we need a wheelchair lift and modifications, not coverable under Medicaid, but coverable under waivers.   Our local home and community based waivers were confused about his eligibility but he has due process rights under Medicaid I was able to appeal their decisions.   We need a ramp to get Mac's chair out of the house and for it to go to the bus.  But not coverable under Medicaid and only through waivers which the county says he is not eligible for.  There is another $18,000 to $25,000 or more. Waivers are waitlisted and children can already wait years and adults  transitioning can wait even longer.

Medications, equipment, therapies, genetic testing that are ordered by physicians become a responsibility to the parent to provide.  Parents can be put in a vulnerable position if they don't get them when both insurance and medicaid deny.  Parents pay because they have to get it, or go without and risk the ramifications.  Only parents get charged with medical neglect, if something happened because we didn't have the right equipment, therapy of medication.  But not the Medicaid or insurances.  We have appeal rights, but are those going to go away too as they were apart of the ACA or Medicaid entitlement?  What will happen for the Children who have complex mental health needs?  Will they have to return to the foster care or justice system to become the only way to get help once again?

Things are going to get more complex for special needs families.  Wait lists already exist and they will get even longer. What will it mean for those with children who are Federally entitled because of their Special Needs Adoption and our promised supports of Medicaid and Adoption Subsidies?

With insurance companies already are known to exclude many things medically fragile, developmentally delayed children, we face many uncertainties.

There are many questions that I have about how the repeal of the ACA will affect my special needs children.  Will our maximum out of pocket protections go away with the repeal of the ACA?  Right now our maximum out of pocket for the family is $13,500 per year.  Will my adopted special needs children and adults be eligible to remain on our insurance or they charge more for his complex needs?  Will our family return to the days of lifetime caps under insurance again? 

I am a strong component of special needs adoptions, but until we know what they are going to do with the care and supports for our special needs children under Medicaid and the changes to insurance and how the block grants are affected come down?

I am hearing no talk about how special needs adoptions and how the child welfare entitlements and grants are being affected.  But so many of the other block grants, and other programs are on the chopping block, one can only wonder.  

Many families cannot afford to adopt these children without Medicaid and waivers to get these children like Mac's complex needs covered.  We have a high paying job, and we find ways to pay when our promised supports have failed.  But even our family is struggling to figure out how to now fund the cost of the wheelchair van modification, the wheelchair ramp and the house modifications to accommodate Mac's needs and genetic testing.   We just spent nearly $50,000 on a new van we knew we had to cover ourselves. I pay for respite, hire cleaning help because I have to watch him so very closely.   The costs just keep mounting.

The schools get Medicaid funding for helping under Medicaid and will those be affected?  Our little guy receives many therapies through the schools to help him with his complex needs.  How about special needs funding and rules under IDEA be affected in the upcoming legislation?

I am not very hopeful that our government cares about our most vulnerable children.  Those who used to be foster children who found families and were promised support to help them in the future.  I would love to be wrong.  But it is a complex system and I doubt those in government understand the complexity of special needs adoptions, child welfare, special needs education, and insurance with catastrophic needs.

Few understand just how expensive and complex children from who have faced trauma, abuse, neglect or live with prenatal brain damage and genetic conditions can be.  The powers that be need to think about how block granting Medicaid, repealing the ACA,  and will mesh with the promised safety net for this very special population.

Our President and many voices in Washington about liking entitlements, so what will it mean for those who have taken in some of our nations most vulnerable children?  We were promised an entitlement to help our societies children. #don'tbreakarpromise  When we as foster and adoptive families cannot find the support and services our children need, we are ultimately set up to fail them. 

Children from foster care do not need more failure. They need help and the United States is big enough to take care of our most vulnerable and they need to honor the promises made when our families took them into the States Foster Care system and promised them homes and the promises to help them in those homes and in our communities.

We need our Senator and Representatives to come together to develop bipartisan understanding about the need for Medicaid for foster and special needs adoptive children.    #don'tbreakapromise
#savemedicaid to continue to help children from foster care find adoptive homes and the hope of a family.

Anny

As Special Needs Parents Our Jobs are Just Too Much!

Our jobs as Special Needs Parents is more than just managing our children. It is all that goes with that that is often frustrating and we are not only care coordinators, financial workers, and so on. But to sometimes it is just too much!

Today's Lesson from Mackie

Mac 6, who has Fetal Alcohol Syndrome, Autism, an involuntary movement disorder which affects his hands and low vision was working with his homebound teacher. He loves reading, but Art is not his favorite for many reasons. He has a project to make and he was just not having it.

His teacher informed me that he just took the pieces of paper and threw them down on the floor. While it looked like an act of defiance or just not having Art class today.

Maybe, but maybe there was more to it. One piece at a time is incredibly hard with his involuntary movement disorders.  Was he overwhelmed?

Talking with Mackie about his art.  He was impressed by the confetti. What do people do with confetti?  You drop it down in celebration.

AHA!  He loves to see things fall, confetti falls, that is what he knows.  So why not solve the problem.  It was too hard and overwhelming I knew.

Mom glued the paper and Mac and Mom made confetti fall over and over again until the paper was covered.  Then Pat, Pat, Pat it down.

Problem solved.  While not like other kids, but he was successful in getting the step done, in his own way and his teacher got to see that things may not always be what they may seem.

Next step, Wednesday.  Drawing Mackie and helping the teacher see how to do it the way he needs and be successful.


Anny