10 Things You Need to Know About FASD: #10 It's Preventable

Day 15

The one thing I hope you learned from our 10 Things About FASD campaign is that it is a life-long disability and the numbers of those affected are staggering.  Most do not know they were affected.
Many of those who are affected by FASD's  find help and diagnosis under one of the Alphabet Soup of co-occurring disorders.

The best thing we know about Fetal Alcohol Spectrum Disorder that it is 100% preventable.
No one need to suffer the long term affects and struggles caused by prenatal alcohol consumption.

Think about it, from statistics 50% of all pregnancies are unplanned. By the time the Mother finds out she is pregnant and STOPS DRINKING ALCOHOL is may already be too late.  But stopping any time along the line can help lessen the effects.

No amount of alcohol is recommended for a pregnant Mother.  It may be her right to drink, but STOP and think about the baby who may have their full potential lessened by drinking while pregnant.

You have probably seen the 049 in some of the graphics and here is the explanation.
SUPPORT - 049

0 = Zero
4 = Four
9 = Nine

for Nine Months - Support Friends and Family's Sobriety through their Pregnant Pause to encourage building better baby brains.

Spread the word and thank you for taking the time to learn about FASD.

Anny

10 Things to Know About FASD: #9 Wise Words From the Experts

Day 14

We asked those participating with the  90 Real People with Real Lives campaign we asked them their one wish.  This slide is not for me to write.  It is their voices, their wishes.

"Anna wishes to be seen for who she is and not for her disability."  from her Mom

"To help others like him in the same way many individuals helped him." from an adult with FASD

"For people to understand that because I look ‘normal’ my brain is not. I am not a ‘bad’ kid or a spoiled brat my brain just cannot process things like yours can. I want friends and can be very loyal. Take a chance and get to know me!"  from a child with FASD

"I just wish my Mom had cared more about me than drinking alcohol. She made it hard for me and it didn't need to happen."  an young adult with FAS

"Jonathan has many wishes!…no more babies born with FASD’s, healing for those who have it, unconditional friendships and acceptance by others." from Johnathan's Mom

"Angelo’s wish would be for no other mom’s to drink while they were pregnant so that other children would not have trouble thinking like he does.  He wishes that he could ‘think straight’."
from Angelo and his Mom

"I wish she knew how much she was loved".  from a parent of a child with FASD

"She just wants to be loved and accepted for who she is, and not feared for what she is capable of doing. To not be loud or lose control. To not get so mad she hurts the ones she loves but can’t remember why?"  from a Parent of an adult with an FASD

"For people to understand and not judge, for people to not assume that just because I look and can act neurotypical, that I am not neurotypical. (That can be really frustrating). And to be treated the same as everyone else." an adult with an FASD

"To never have anyone go though what I did with living with FASD." an adult with an FASD

"Tiana wants people to know that just because I have FAS and have some problems that I am no different from anyone else."  a wise young lady with FAS

 "My wish is that people living with FASD receive SERVICES AND PROGRAMS. Services that accommodate, and programs that coach them to manage their FASD, help them to move forward with their dreams and goals, to understand FASD even if its a little bit at a time. For the world to understand what FASD is like, LIVING ON A ROLLER COASTER THAT NEVER STOPS BUT WE CAN RIDE THE RIDE WITH JOY, LOVE, EXCITEMENT, AND STAY HEALTHY!" well said by an adult with an FASD

"Educate to Erase #FASD"  Thank you Rebecca an adult with an FASD

10 Things to Know About FASD: #8 Think Beyond Chronological Age

Day 13

With working with kids and adults with FASD's we need to look beyond chronological age. We need to meet them where they are function and adjust our expectations.

A child's chronological age is their age based on their date of birth. Their developmental age is the age at which they function emotionally, physically, cognitively and socially.  While a child with FASD may be 8 years old, they may be functioning very much younger.  Often times kids with FASD are functioning at half their chronological age.

 Think about it.                                        

                                             Developmental Age Equivalent

Actual Age                            18 years

Expressive language             20 years

Comprehension                      6 years

Money and time concepts      8 years

Emotional maturity                 6 years

Physical maturity                  18 years

Reading ability                      16 years

Social skills                             7 years

Living skills                           11 years

*Streissguth, A.P. & Kanter, J. (Eds.) (1997). The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. Seattle: University of Washington Press.

Understanding that there is often a difference between a child's chronological and developmental age will help caregivers and professionals have more realistic expectations for the child with an FASD.

Age Appropriate Expectations versus Developmental Age Appropriate Expectations

It can be easy to think of kids who don't meet typical milestones as being younger than they are or  if they are small and appear much younger.  But it can be confusing for all when a child physically and cognitively appears to be say 13, but emotionally acts like he is 6.  They child wants to be like everyone else, but struggles with peer relationships and emotions due to his developmental lag which makes it even harder on everyone.

For parents and caregivers we need to set up a child for success by meeting them at their developmental age with fun, learning and structure.  All the while taking into account the individual strengths and challenges of each individual child with FASD.

For adults with FASD because of the developmental lag a delay in the full responsibilities of adulthood may be a protective factor.  Imagine sending a 9 year old into the real world with little to no support when they are 18. For adults with FASD we need to meet them where they function and give them the circle of support tailored to their needs for life.

Anny

10 Things To Know About FASD: We Talk Too Much

Day 12

One of the biggest challenges about working with adults and children with FASD's is that often need help with interpreting what is being said and they need it presented in a way that they can understand.   

When talking with my daughter, she tells me the teachers talk like the teacher from Charlie Brown. Unlike Peppermint Patty, my daughter would sit there quietly trying to process what was being said.

She would watch what the others were doing to see what book to take out, what page to turn to or whatever they were doing for a cue to know what to do next. In first through third grades, she did great in a classroom where she was mainstreamed with kids with hearing challenges due to the interpreter and the all the visual instruction!  When they took away what worked she struggled.

Sometimes we speak too fast and part of the dialogue is lost in translation.  Think about missing key words in an instruction and to later learn after the fact that you did exactly opposite what was expected due to missing part of the instruction.   For my Mackie, he does not process Do not. He hears the instruction first and completely misses the do not.  So he does the vary thing you asked him not to do again and again.   So if we tell Mac  "Do not hit the cat."  He will hit the cat again and again again until we we change the command. We have learned that we need to tell him what to do instead. "Be nice to the cat!"

We talk too much with persons with FASD. We need to talk slower, simpler and know how the person with FASD needs us to communicate. We may need to give 30 to 45 seconds for processing and then allow more time for them to  access their response.   Others may need repetition or it written to process the understanding.

With my 6 with FASD's each have their own individual strengths and challenges. No two are alike. While one may be able to process normal spoken language, when disregulated or off balance,  he may need back up written messages.  Texting with my adults with FASD has been a very wonderful tool for me to use when communicating and they can go back to double check the instruction if they forget.

A couple of my kids are athletic.  But for one, she was fast!  She as an eighth grader ran times that would have qualified her for the state meet her brother attended.  She has a processing delay.  She was always late off the starting line.  She didn't hear the starting gun.  She didn't go until after the racers were off their mark.  She still moved on to win the race. But she was getting yelled at by the coach for her delayed starting.  I stepped in and talked with the coach and we got someone who gave her a hand signal (accommodating her the same they would a deaf runner).  She shaved seconds off her time.  She shined.  But high school happened, state rules interfered and she once again was frustrated by not knowing when to go and quit track. Today I would have known better how to fight for her right to accommodation. 

The saying "Hear it and they often forget. See it and they may remember it."  It is a must to remember with many with FASD's as they use visual memory much better than anything given auditory.

Advice from someone who had to learn the hard way.  I thought they understood. Sometimes he could tell  me verbatim what I said right after the fact.  Other times they would agree and would tell me they will do it or they could do it. But not.

 Just because a person with FASD can answer the question and know the answer does not automatically mean they understand what you said.  Double check for understanding and be ready to explain -- connect the dots for what they are missing.

In some with FASD's  due to executive function deficits, cause and effect challenges what they know and say cannot always be put into action.  It may even be understood in one way and may not even work in reality. And what one day they can do, may not happen tomorrow. What is known in one setting may not be translated into another.

Can I say this is complex stuff?  Think about how frustrating it is to have processing challenges in our complex world due to no fault of their own.

We would not expect a deaf person to go to an appointment with out an interpreter have a tool to hear. Persons with FASD need help with cognitive translation in ways for them to process and have full understanding of our complex fast moving world.

I have gone with my adult children to SSI, Medicaid, coaching job interviews from afar. I have helped connect the dots with the justice system and translate the legal jargon to my child. I am there as their interpreter, coach and friend to make sure that they expand their confidence and supported. 

It has been a l9 year learning curve and I am still learning.  My adult kids with FASD are more open now to helping me understand.  They have developed many tools and ways to help compensate and they are amazingly resilient. They each have incredible gifts and talents and we need to help support and accommodate the challenges.

Anny

10 Things About FASD #6: The Struggle with "Normal"

Day 11

Prenatal alcohol exposure can cause permanent life long challenges and each person is affected differently.  Those with FASD can have memory difficulties, processing, auditory, visual and sensory processing issues.

For those affected, no two are alike, but these common difficulties in some degrees affect the majority.

Prenatal alcohol exposure can affect any system of the body including they eyes and the processing of visual information and there are over 428 different diagnoses associated with FASD's.

People with FASDs have a hard time with memory and learning. More than not, a person with FASD is living a moment to moment existence .  My youngest daughter was found at the age of 16 through her a neuropsychological examination to have a profound memory disorder.  I knew that she would often live in the moment and she really does forget. My daughter is just like Dory from Finding Dory. She tells me that she has young people's Alzheimers, except she never could remember in the first place. But she is amazing with electronics.

The reason for these memory and learning problems is that alcohol exposure interferes with brain development. It can reduce the size of certain regions of the brain and can hamper communication between the different parts of the brain.  When that communication throughout the brain doesn't work smoothly, people tend to have problems with executive function.

Executive function is the mental processes that allow us to plan, focus, learn from experience, prioritize and in other words get things done and remember to get things done and why. Persons with FASD will have executive function deficits in some way or another.

Executive function deficits:
https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/executive-functioning-issues

Auditory processing disorder:
Auditory processing disorder (APD), also known as central auditory processing disorder (CAPD), is an umbrella term for a variety of disorders that affect the way the brain processes auditory information.
http://www.asha.org/public/hearing/Understanding-Auditory-Processing-Disorders-in-Children/

Sensory processing disorder:
Sensory processing disorder (SPD; also known as sensory integration dysfunction) is a condition  when multisensory integration is not adequately processed in order to provide appropriate responses to the demands of the environment. 
http://www.sensory-processing-disorder.com

Receptive and Expressive Language disorders:
An Expressive language disorder is an impairment that makes it hard for someone to find the right words and form  clear sentences when speaking.  A Receptive language: It can make it difficult to understand what another person says. Some may have both.
https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/communication-disorders/understanding-language-disorders

Persons with FASD due to no fault of their own, everyday will struggle with what comes easily to the rest of us.

When a person with FASD is stressed, they will struggle more with accessing, processing information and regulating their emotions and life can be even more complicated.

Patience and understanding will go a long way to make it easier for them.

Anny

10 Things to Know About FASD: #5 FASD Is Life Long!

Day 8

For those with FASD diagnosis is paramount. For those who grow up with having an FASD and have early diagnosis and intervention we give them a step up and hopefully more resilience and a better future.

Fetal Alcohol Spectrum Disorders is a permanent life-long condition and there is no cure.

Having FASD will not go away!  No not ever!

For those with FASD diagnosis is paramount. For those who grow up with having and FASD and have early diagnosis and intervention we give them a step up and hopefully more resilience and a better future.

Most of my adult children with FASD due to their normal IQ, have had to fail first before getting help.  The only hope for services is when their secondary mental health needs go into crisis.  In mental health they use the recovery model.

Recover from FASD?

I have seen that my adult kids do better once services are put in place.  Once the secondary mental health needs get stable, the systems pull back the vary services that led to the stability.  Thus creating a roller coaster of failures.

For the persons with FASD who fall into the developmental disabilities services it is far more understanding.

We need a CATEGORY under the disabilities Silos of support that persons with FASD can find appropriate services without having to find their services after they fail enough to develop secondary mental health and secondary disorders.

FASD does not need to be HOPELESS!

Anny

10 Things To Know About FASD: #4 Most People with FASD have Normal Intelligence

Day 7

Most people with FASD will have normal intelligence and their are those who have high intelligence and are gifted but they can still struggle. Prenatal alcohol exposure is a leading cause of prenatal neurological challenges.

According to one study, 86% of individuals with FASD have an IQ in the "normal" range and do not qualify for services for developmental disabilities.  They nevertheless have impaired mental functioning caused by brain damage that is permanent and irreversible.

According to Streissguth and other studies, the higher the IQ the more persons with FASD are misunderstood and have poorer outcomes.   Those with the hidden neurological challenges and appear normal are set up for expectations that they cannot meet.  Schools, society and employers cannot see their hidden challenges.

Think Developmental Age and Chronological Age.  This can be hard as they are often times functioning well below their Chronological Age.  But they do not want to be treated differently.

Understanding in Adults with FASD from Nofas

Often times their strong verbal skills can hide or mask the deficiencies and it can be confusing to those working with them.  My kids would have memorized the answers and may not be able to put into practice what they know.  Executive function, memory, social skills, cause and effect are all can be affected.  I have learned in my 20 years of working with those with FASD that they can be good actors. They have learned to mimic normal and when you double check for understanding often times they cannot explain.   People with FASD can be vulnerable to suggestion and wanting to be accepted can lead to victimization.  They can struggle with predicting outcomes and having a trusted people to coach and problem solve need to be part of transition and lifelong planning.

Secondary Disabilities in FASD.
Over 90 to 98%  of those with FASD will have or develop secondary mental health challenges.

According to research only 8 percent of those with an FASD will live independent successfully. The rest will need a spectrum of support geared to their own unique needs.

What happens when we do not support those with FASD in adulthood adequately?

Check out the statistics

Families know all too well.  On our Parenting FASD Teens and Adults caregivers and parents share our challenges and our grief at just how hard it is to find support and understanding for our Teens and Adults with FASD.   Most will struggle with jobs, qualifying for disability services and their "normal IQ" The adults with FASD especially in the transition years of 17 to 27 the lessons are often learned the hard way by all involved.

Persons with FASD need a circle of support.  As we advocate for those with Fetal Alcohol Spectrum Disorders we lifelong person centered supports tailored to each individuals strengths, challenges and choices so they can live successfully in our communities.

Anny

10 Things About FASD: #3 Most of the Time FASD is Invisible

Day 6

It is estimated that only 1 in 10 kids with an FASD will have full Fetal Alcohol Syndrome.

In our Parenting FASD Group the parents who have children with the invisible signs of prenatal alcohol exposure struggle with getting diagnosis and help for their children who were prenatally exposed.  Often times parents struggle with knowing that their child has an FASD and will find many closed doors to diagnosis.

The children with full Fetal Alcohol are often diagnosed much younger and have the classic FAS features and growth failure.  With that they get more earlier intervention and understanding.

In Fetal Alcohol Syndrome the diagnosis is made by looking for the visible signs:

Abnormal facial features.
A person with FAS has 3 distinct facial features:

1. a smooth ridge between the nose and upper lip (smooth philtrum),
2. a thin upper lip
3. a short distance between the inner and outer corners of the eyes making the eyes look wide spaced.

Growth problems:

• Children with FAS are at or below the 10th percentile for height and/or weight.
  Some children with FAS can outgrow their growth failure later in childhood
• Central Nervous System Disorders
• Requires confirmation of prenatal alcohol exposure.

To get an FAS diagnosis the child needs to have all three of the above.

To learn more about diagnosis in Fetal Alcohol Syndrome

For the MAJORITY of the kids with Fetal Alcohol Spectrum Disorders you cannot tell by looking at them and even professionals struggle with diagnosis.

Learn more about FASD Identification at Nofas.org

From Nofas

“Although it has been over 40 years since the harmful effects of prenatal alcohol exposure were identified in medical literature, the majority of individuals with FASD—of any age—are not properly diagnosed.”

Those with most FASD’s are often times diagnosed with any of the little d’s of the Alphabet Soup instead.

Anny

10 Things to Know about FASD: #2 No Two People are Alike and It's a Spectrum

Day 5

Fetal Alcohol Spectrum Disorders is an appropriate umbrella for the wide variety of ways people exposed to prenatally alcohol are affected. Depending on the how much consumption, the time of consumption, stress, nutrition and all sorts of still being determined ways alcohol affects the development of the baby.  Add individual genetics, the timing of the exposure, there are so many things that come into play.

It's complicated.   Think about the new article where they gleaned information from the scores of articles on just Fetal Alcohol Syndrome and they found over 400 differing diagnoses and medical problems.

"Researchers at the Centre for Addiction and Mental Health (CAMH) have identified 428 distinct disease conditions that co-occur in people with Fetal Alcohol Spectrum Disorders (FASD), in the most comprehensive review of its kind."

To see the article in the Lancet from March 5, 2016

Comorbidity of Fetal Alcohol Spectrum Disorders: A Systematic Review and Meta-Analysis

At least we are beginning to understand and acknowledge just how complicated FASD can be. For those who are affected and the families understand that prenatal alcohol exposure causes challenges that are different for each person who is affected.

Anny

10 Things You Need to Know about FASD #1 People with FASD have challenges due to no fault of their own!

Day 4

My friend and I were venting about the unfairness of FASD. I was sharing with a friend one day about a conversation with Miss Dee who was talking about her FASD.  "Why did she and Mac not have the right to be born with healthy brains?"  

How can I answer that question? She wanted to know "Why people made her feel bad that she had Fetal Alcohol Syndrome? It's not her or Mac's fault!"  Talking further, "I get in trouble for forgetting. I get told to try harder. I can't learn like everyone else." 

She added, "Why do people not care about us until we are born?  "Why would anyone care more about having fun drinking alcohol than their baby? A loaded question. 

Dee and Mac's  birth mothers had challenges of their own and they had their first drinks long before they took their first breaths. Both mothers had learning problems, mental health issues and had substance abuse dependencies and both Mac and Dee have full fetal alcohol syndrome. I  have learned that they all have complex challenges and trauma.

Those who have FASD are innocent victims. Innocent Victims of being exposed to alcohol prenatally and further victimized by the lack of appropriate services. . Misunderstood and blamed for their hidden neurodevelopmental challenges. 

There is no place for people on the spectrum to fit,  Mental Health Services, Developmental Disabilities, Autism, are the silos where they sometimes can garner support for their prenatally acquired brain injuries.  So many service silos require a fail first mentality, you have to fall so far to get any help. We need preventative early intervention services from birth on and a circle of support and understanding for life.

For the fortunate few, they kind of fit someplace. FASD needs a category all of its own. They fit on the DD if their IQ's are low enough, or on the Autism Spectrum if they have enough social inadequacies or sensory issues, or on the Mental Health Spectrum when they have floundered and failed enough to fall into secondary mental health issues. People who have a Traumatic Brain Injury have a silo to garner services, but not FASD.  Services and understanding by professionals who understand FASD's are hard to find and expensive.  It is said one person with full Fetal Alcohol Syndrome may cost over two million dollars in a lifetime. 

How many people are living with FASD?  We do not really know.  From the CDC statistics, "based on community studies using physical examinations, experts estimate that the full range of FASDs in the United States and some Western European countries might number as high as 2 to 5 per 100 school children (or 2% to 5% of the population)." 

How many kids are prenatally exposed to alcohol and are diagnosed under the Alphabet Soup of co-occurring diagnoses like ADHD, autism, bipolar, anxiety and learning disabilities?

Statistics of FASD. 

Why can't we get diagnoses and help for those with FASD's. It is a shame based disorder. Most will not get diagnosed to the root cause. It is OK to have ADHD, ADD, Autism Spectrum Disorders, LD  learning disability, or other mental health problems in our society. But to get diagnosed, there has to be confirmation of drinking alcohol during the pregnancy which then becomes someones fault. In our legalistic society, we blame the parents, we blame something for outcomes.  What parent is brave enough to admit they caused their child's brain injury?  Some may not even know. There is conflicting information on how much alcohol is safe and up until recently, no dire warnings.  There are a few courageous Parents who love their child enough to admit to alcohol use but most who are diagnosed are not the families of origin. Foster parents, adoptive parents, kinship parents are in the majority getting diagnoses and that is never easy to find and get. 

Causing FASD is not just a problem of chronic substance abusing parents.  It is a much larger problem. A women binge drinking before she knows she is pregnant prenatally exposes the baby to alcohol.  

What we can do?  Spread awareness about FASDs and be supportive, caring and understanding to those who have FASD's. 

Anny

Day 3: FASD is a Lifelong Condition

Fetal Alcohol Spectrum disorders is caused by prenatal exposure to alcohol and is a permanent lifelong condition. There is no cure. Prevention is the key and we need understanding and support for those that are affected.

 Anny

See Beyond ...

See beyond...

Inspired by a post in the Autism movement, remade for FASD.   Both disorders can have an overlap. Kids with FASD can be diagnosed as having Autism and an FASD.  Others who are prenatally exposed will find the diagnosis under an Autism label.

Day 2 What is Fetal Alcohol Spectrum Disorders?

Day 2

What is FASD?  Fetal Alcohol Spectrum Disorder is a group of conditions caused when an individual is prenatally exposed to alcohol.

Yesterday was a busy day and we are shared a graphic to teach about the FASD umbrella!

FAS = Fetal Alcohol Syndrome
ARND = Alcohol Related Neurodevelopmental Disorder
PFAS = Partial Fetal Alcohol Syndrome
ARBD = Alcohol Related Birth Defects
ND-PAE = Neurodevelopmental Disorder-Prenatal Alcohol Exposure

To Learn more about FASD go to National Organization on Fetal Alcohol Syndrome

Mac says Thank you for learning more about the FASD's.

Anny

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