Celebrating School: What We Got Right Day 2 Medical Home

The crisis of Becca's birth and medical complexity began in 1989 and her lengthy NICU stay would put us on the road to learning to Parenting Special Needs and the road to navigate the very new and challenging world of medical needs and school.

An improper unplanned discharge set up the first time I would have to face advocating to change the system.  My sister who was in medical administration made a phone call to the state talking about the lack of discharge planning for Becca after six months in the NICU. Twelve days of no sleep, no help and no lifeline, I was taking care of a child who still belonged in the Intensive Care unit alone and wthout any tools.

Heading in one day to visit Becca I was met with the social worker at bedside.  The hospital's quality control and administrative leads wanted to have a meeting where we talked about what happened and this Mom was scared.  Santa meeting Becca at bedside was the calming force before heading into the boardroom to tell the story of my twelve days home with Becca and answer the boards questions.

That meeting would not only change everything for Becca but would get Becca's primary nurse hired as the first NICU full time discharge planner.  The hospital would continue to set up and coordinate the home care that our new primary doctor had been trying to set up from home and that took Becca back to the hospital.

The hospital arranged to put together a Care Conference with all the people involved in Becca's care.

The Doctors, the Case workers from the county and the hospital (Waiver services were put into place), her Primary care physician, the Birth to Three services workers, the School District, the Nursing agency, the County Health Nurse and our Pastor from our church.  Thirty-four people to get Becca home and surround her with the care she and our family needed to be safely out of the hospital.  Planning for palliative care long before it was ever dreamed of being a concept.  We talked about what to do if she needed to go back to the hospital or heaven forbid she would die at home. A topic no parent would ever want to face. How to avoid a length Child Protective Service investigation that would endanger my other children from not only losing loosing their sister, but their family while they awaited the results of the autopsy that would clear us of any wrong doing.  They had seen stories of other children being removed from the home after the death of a critically ill sibling.  I learned that the CPS system is there to protect kids but sometimes it just doesn't get things right.  Children who die at home it is always someones fault.  We had to make plans for just that circumstance, because they thought the professionals had little hope of survival.  But on the flip side they worked on goals for her development, goals to continue to music therapy that I had started at bedside within 24 hours of being in the NICU.

Becca was fortunate to be born shortly after Katie Beckett opened the doors to getting our kids out of the hospital and home.  A waiver of funding based on Becca's income only brought Becca home and the supports she needed to be there.   Becca was blessed to qualify one of Minnesota's 200 waivers for children and adults who needed to be at home at Intensive care level needing hours of RN level nursing and that was provided by the pediatric nursing agency Caregivers Network.  They coordinated the care at the hospital and even had the main nurses train while she was still in the Pediatric Intensive Care unit.  Care coordination at its best.

IFSP   my first experience a school acronym and my first meeting within the educational system.  I was invited to be a team member to help creating an Individualized Family Support Plan  for Becca's education at 6 months of age.   Becca once home would start having the physical therapists, teacher from the school both coming to our home.  School at home with a tiny baby.  She was in her own environment and the nurses and I and her siblings all included in helping Becca learn and shine.

Becca was blessed with a Medical HOME already back in 1990 after advocacy that not only gave Becca her freedom to be home, but the tools she and our family needed to SHINE.

Thank you Children's Hospital of St. Paul for the gift of thinking out of the box and creating a Medical Home for Becca and being apart of her care for the first 7 years of her life.  Thank you to all the systems that came together to make that happen.

Anny

Counting Down the School Year: Day 1 Celebrating What We Got Right

31 Days of Stories of School Success

I have been a parent of children with special needs for a very very long time.  With my tribe of a dozen unique children and we have struggled, but we also have found out of the box thinking to accommodate some of their very unique needs.

Too often we talk about all the problems and struggles we have with schools and our children with differing abilities, but rarely we celebrate what is working.  We as parents finding ourselves in the isolating world of "fighting" the schools, trying to advocate for our kids outnumbered by the professionals that sit across the table.  We are up against the wall and seriously the ongoing stretching of parents and families to get the unique Individualized Education Plan that was promised, a challenge for all with time, resources and lack of knowledge to help our most vulnerable children.

As a parent I have had to become well-versed in IEP and 504 plan laws, advocating and not crying at IEPs, going to trainings and attending webinars over these now over two decades with this tribe of mine and learning to help parents advocate for their children.  We see all the posts of the social media about IEP parents and the meetings from H.e. hockey sticks.  School professionals talk about the failures of the family, parents not doing their parts.  Schools blaming the family, family blaming the schools.  The divisiveness fueled by frustration, by lack of funding and most of all the uniqueness of our children and their failure to fit in the box of school.

I need to get back to writing after finishing my latest project and here goes my crazy idea.  Too many times we only hear the negative stories, I am challenging myself for the countdown to the end of the school year to write stories celebrating "What We Did Right."

Day 1 Kindergarten Hooky

Looking back, my children on one end of the bell curve, was just the preparation for my children who would come into our family on the other with their differing abilities that do not fit in the box.

For me it all began with when my daughter came home from Kindergarten early 35 years ago and it was not time for the school bus to arrive, I learned very quickly that schools struggle with our out of the box children.  My daughter was bored and a phone call to the school saying that my Kindergartener had been playing "hooky" and had spent the day hiding in the garage reading a chapter book instead of going to school and  that school was boring and for babies.  17 days of missing school and it was only October.  Tummy aches, vomiting and her behavior was telling me something that I was missing.  That day was the lightbulb moment, she could finally tell me in her little 5 year old wise way, school did not fit.

I was 'just' a Mom with 4 children under 6 and not knowing what is normal or typical.  Was it normal for kids to read before kindergarten?  Talk before she could walk?  One day while sitting in the bathroom when she was two, she asked me about times.  I said, "Clock times?"  She replied, "No Mommy, the x with the numbers and the equals sign."  Thinking,  "How do I explain this to a two year old?  Two two times."  She piped up 4.  Then moving on through the lower facts three three times.  She replied "3, 6, 9 Mommy!"  That is when my two year old mastered addition and in less than 15 minutes could do all the facts through the 6s.

A phone call to the school counselor, explaining my daughter's day of playing hooky, listened carefully and then said "Mrs. Yurcek, you are describing a child who is far ahead of the other children and we have a speaker tonight at a parent meeting coming into the school district.  Could you come to the school at 7 and hear the psychologist talk about 'gifted children'.   This Mom was the slow learner on this lesson.

My husband and I found a sitter for our littles and left for our first adventure into the world of special needs education. As the psychologist talked about all the traits of gifted children, we just nodded our heads and looked at each other with understanding that we had one of those kids.

After the meeting, we stopped and talked with him and made arrangements the following day for him to privately pay to test our eldest daughter.   Well, it went on the credit card, as we lived paycheck to paycheck. The results surprising she was definitely gifted but her learning years ahead of her classmates. His recommendation was to skip her ahead two years, but the school district would not agree and placed her in an inclusive gifted classroom.  They felt gifted kids needed to be with their peers and in their appropriate grades.  In the classroom the teachers were trained to teach to their individual strengths and challenge the students while teaching the required curriculum.

She was still bored, but I learned to teach her at home and follow her strength based learning.  Garage sales found the math workbooks and textbooks that she would challenge herself with.  She found friendship with other kids who were like herself. She had a social world of school, an important piece of learning was to get along with others.

We were blessed to have been in an out of the box forward thinking school district and a move to a new home at 3rd grade had her missing her friends, bored, and struggling with headaches.  I knew I needed to do something and the times were opening the doors to out of district enrollments.  I pulled the kids from our home district and back to the smaller school district with the gifted program that my daughter and some of her siblings needed.

But as with any out of the box child, we had our struggles.  Work was mundane, repetitive and she would argue with the teacher when she felt they were wrong. She loved to debate the answers on tests to challenge the teachers thinking.  By the way, some teachers do not like kids who speak up and prove them wrong.  I found myself in the principals office a few times advocating for my outspoken daughter.  And her grades would show us what subjects and learning she felt valuable.

I became Mom and bus driver, making multiple trips to the schools for my growing family.  You do whatever it takes for our kids educations.  The school would work with us to diagnose my youngest sons dyslexia and the head of the special education department told me that it was very common for gifted children to have learning challenges.  Any child who does well in Math and cannot read, there is a problem.

Time would go on and now those children are grown, making it to places I never believed possible.  My daughter a Vice President of a major corporation.  Her bossiness and out of the box thinking took her to the top, she challenges herself and if it becomes mundane she has to move up to the next challenge.  My son who is dyslexic is working in insurance and project management, his understanding of himself and modern technology has helped level the playing field for him to do his job well.   They all have found their ways, but school was just part of the journey.  It was out of the box thinking, working with the schools and teaching and nurturing their strengths.

One day talking with my daughter, apologizing for not being able to afford to send her to the private schools that she needed. She told me "Mom you did the best you could and you allowed me to be social and be with the other kids and that helped me understand how to deal with people in the world."

I learned that having children who are gifted is a challenge of its own, just another kind of special needs student.  We now have advanced placement and other courses in high school, but now Kindergarteners are reading doing challenging learning but on the flip side, most children are not developmentally ready for those learning challenges.

I learned to let my children play, learn, challenge themselves, and nuture their strengths and they do grow.  I learned that it was my job to advocate, reach out and ask questions and partner with our teachers and schools to find and create out of the box learning opportunities.   And when it wasn't working to think out of the box and find or create what they needed to shine.

A special Thank You to Spring Lake Park School District in Minnesota for your part in my children's educational success.

Anny

Bullies Meet Their Match When You Mess With Their Sibling With Special Needs

I was talking with Marissa the other day school about with Mackie and the fact that he has friends and inclusion.  It brought back memories of Becca's years of being the very first medically fragile child in her elementary school in Minnesota.  Teeny tiny Becca was barely the size of a two year old and for early childhood went to school with her long time nurse Zoe.  Zoe had taken care of Becca since her discharge from the NICU unit and took pay cuts to remain with her special girl.  But Kindergarten meant that the school district was forced by the state to hire a trained paraprofessional to work with Becca full-time and because the school had a full time nurse. I got to know Pacer Center very well.

Change was hard for Becca and it became Marissa's job to walk her up to the door to meet the paraprofessional at drop off.  I had tried to make the transition with the para, but Becca did not do well with it.  She was too attached to Mom so Marissa became it. She had always had Zoe for the early childhood bus rides for her 3 year old and 4 year old years.  Everything had changed. A big school, new people, her support people were no longer there. She was the only medically fragile technology dependent child in the elementary school.  But she had her siblings. Matt, Marissa were in the elementary and the Ian was in the attached middle school.

Marissa walking her sister into the building or rolling her in her little pink Zippy Quicky wheelchair warmed my heart.  She was confident and the rare moments when Becca melted down on the side walk crying that she wanted Mommy, Marissa was able to redirect her into something else and singing a song or talking about Becca's favorite obsession of the season.

Marissa would  carry the backpack, her backpack and Becca's smaller backpack that contained her always running feeding tube and its 6 foot long cord if she is walking.  One day they were both walking in to the school and Marissa's classmates stopped with his friends surrounding them both.

The tallest boy in her class, the class bully, yelled out in front of everyone "Hey Marissa are you walking your dog?"

Marissa had been taught that you do not pay attention to bully's.  No playing the "Gotcha game." What is the Gotcha Game?  It is the bully provokes you to react and then they gotcha frustrated. That is the whole thing the bully enjoys.

She was a big sister and as the day wore on she was getting madder by the hour.  Marissa while a girly girl, had two big brothers and a very very strong minded older sister so one thought that she was the quiet more passive one, but she was well-versed in holding her own.

She walked into the lunch room and there stood the tall bully.  Marissa walked up to him, said nothing and clobbered him on the head with her prized Trapper Keeper.  For those of the next generation who does not know what that is, it is a closed binder that is solid and strong



The boy asked her "Why did you hit me?"   Marissa responded, "Don't you ever tease my sister again and every time you do, I will clobber you with my Trapper Keeper and if anyone asks, I will tell them what you said and I do not care if I get in trouble, because you will to."

The lunch supervisor stood by and smiled at Marissa and my daughter who never got in trouble, was well over head shorter than him figured she must have had good reason.

Marissa talked about kids were allowed to work out their problems between themselves and the professionals had some sense.  Today it seems as though they cannot work things out.   Marissa was a peer volunteer and she helped mediate disagreements between students and help new students feel welcome.

 Today the bully's know the system and how to play the Gotcha game and the victim will be the one who will pay the price for trying to defend themselves.  Many of the bully's are the children who feel different or are struggling and have issues of their own.  The big old pecking order.  There is no check and balance system in this legalistic society and the schools no tolerance programs is why the rise in bullying.

I hope the bullying campaigns and the programs like Pacer Center offers about bullying and teaching and honoring differences will change the trends.

But for Becca and the others, the siblings are our kids with special needs protectors.  Anyone who bothers Becca or the others faced a tribe of Yurceks who will stand up to bully's.

Marissa reminded me, that one can be frustrated with a sibling, but if someone else does something they will be sorry because they will stand up for one another.

Anny

A Halloween Miracle in Teal by the Little Town That Could for Mackie

Sweet Treats 2017, Lancaster Wisconsin

Mackie is seven and  loves Halloween.  Mackie is our little guy who is medically complex and is adopted from the foster care system in our state. Halloween is his favorite holiday of the year just like his big brother Ian. Last year we made the trek to Universal Studios for the Halloween Horror Nights for his big brother. When Mackie who has Fetal Alcohol Syndrome, Autism and has neurological damage that affects his motor planning systems was 4, during the day he was silent, but "fixated" on "Charlie Brown and the Great Pumpkin". Over and over and over again he watched the movie on the TV, on his iPad sitting beside his Snoopy Build A Bear months before Halloween arrived. He could get his point across even without his speech and would not give up until we put on his favorite movie.

One night in the middle of the night we heard him talking at his usual 3:00 am wake time! What Mackie was talking? Listening closely I could not hear what he was saying. I knew he was saying words, but ever so quietly. The next night I came up with a brainstorm and placed a tape recorder in his crib and replaying the tape to my shock discovered that he was "reciting" the entire script from Charlie Brown and the Great Pumpkin. The speech that left at 21 months was there and he was not just capable of simple words part of the day, but he could speak in complex sentences. I am not too sure, but I don't think I could memorize the entire script for an entire movie, how about you? Mac could.

Like every kid, we would go "Trick or Treating" Mackie would silently sit in his wheelchair and be like every other kid. A trip to the fire station for our yearly picture which would arrive on this Mom's email the day after. The yearly pictures are a highlight of his scrapbook documenting his growth and looking back just how far he has come.

Mackie's Obsession

The Great Pumpkin was his 4 year old obsession and when were put him to bed after visiting a few homes "Trick or Treating" he was inconsolable. Mackie is quiet, he is a happy little guy. Something was terribly off. Rocking and putting on his favorite movie, snuggling his blanket, tears filling his eyes, he spoke up. "I need to wait for the Great Pumpkin". A sentence! He was sobbing.
Thank heavens for Motrin and his sleeping meds, he finally dozed off. I ran on an mission to our 24 hour Walmart and came up with a plan to have the Great Pumpkin arrive and trade his bucket of candy he would not eat leave.

Dear Great Pumpkin

The following morning Mackie and I made a trip to the backyard and in the pile of weeds in my neglected garden a orange and black package awaited for Mackie.
The Great Pumpkin came and Mackie's tradition was started and it solved our Halloween dilemma. Mackie has challenges with oral motor control, he has food allergies and intolerances that make eating candy something he cannot do. We have to look to see the ingredients are "Mackie Approved". Dye free, gluten-free, dairy-free, soy-free, peanut-free. The Great Pumpkin comes every year and his candy bucket is exchanged for a new wished for toy.

We are veteran parents of dealing with children with food challenges. My children grew up in the l980s and l990s with celiac disease at the time when no one knew about this unheard of disorder. The kids looked forward to the GREAT CANDY Swap they had with their friends. I had to be the monitor as the older ones would take advantage of the smaller kids to make sure it was fair. But Dad always ended up with a bucket of Babe Ruth, Kit Kats and Butterfinger candy bars as no one wanted them. But the GREAT CANDY SWAP helped my children trade off the offending candy to their friends and they got the ones they could safely eat. I was a veteran of reading the fine print on the tiny pieces of candy and had no internet to help me!

Teal Pumpkin Project

I am so very thankful for food labeling laws and awareness. Facebook has become a lifeline for Parents with Special Needs. I share our day to day adventures with Mackie on my Facebook wall and last year I shared about taking him "Trick or Treating" downtown on the courthouse square. He had a blast, he got his candy and we put it up. But he could not have anything in his bucket. But the Great Pumpkin would solve that on Halloween night. But he participated. I thought nothing of it.

Cruisin Kids:  Lancaster, Wisconsin

I received a message from the shop owner who felt bad for Mackie. Karri the owner of "Cruisin Kids" has a niece who has challenges. She knows about inclusion. September 21 I received a Facebook message with a flyer about the 2017 Sweets and Treats event and the businesses will have allergy friendly alternatives. I stopped by to thank Karri asked what I could do to help. She said we needed to ask for the treats and she wished we had something to identify the kids who could not have treats.

Thank you Target Dubuque, Iowa for the Buckets

I walked into Target and found in the Dollar spot 6 Teal Pumpkin trick or treat buckets. A helpful Dubuque Team member helped search the system for when the next buckets will arrive and I stopped by to pick up all the Teal in the box that was just off the truck. A trip to Target in Madison after a medical appointment found another 9. 25 Teal buckets and a bag of non-food treats would be delivered to Cruisin Kids before the big day.

There are plenty of toys for treats at Target

Have you seen the Teal Trick or Treat Pumpkins while shopping for candy in the Halloween aisles. Learn about the Teal Pumpkin Project

This year at Halloween Mackie would be included. He could have Treats and this year he can use his new speech device to say "Trick or Treat", "Happy Halloween", "Thank you for the treats", ask the other kids "What is your costume", and say "I am Snoopy." His school speech therapist help us get his talking device and programmed in his Halloween messages.

Thank you Pottery Barn Kids, Charlotte, North Carolina

A phone call suggested by his big brother Ian to the Pottery Barn Kids Store in Charlotte, North Carolina found the sold out on line Snoopy Costume which someone had just returned and it was the only one left in the system.  A trip to Build A Bear after a doctors appointment found his penguin side kick Furry's Pumpkin costume.  Snoopy costume, check. Pumpkin costume, check. Teal bucket, check.  Every morning he asked if it was Saturday.  Finally the long awaited day arrived.

Mackie, Furry and Doctor Dad

Saturday  10/21/17 was Sweets in Treats in Lancaster, Wisconsin and a magical day. Every where we went, Mac has his treats. He played his social messages.

Happy Halloween

Trick or Treat

As we walked the streets we would have people stopping and saying "Hello Mac". Kids from his school would make the point and stop to "talk" with him.   I wish I had releases to show the videos of him talking with his friends! Adults who work in the school or the local medical system who work with him or his Doctor Dad. Mackie is his own kind of celebrity and it warms my heart that he is not ignored like many kids in a wheelchair often are. But he is included, he is popular and included.  His side kick Furry was also very popular dressed as the Great Pumpkin.  But that is another story for another day...

"Hello Mac"

"Thank you for the Treats" with help from his Novachat10

Thank you Karri Schauff at Cruisin Kids and the businesses in the small town of Lancaster, Wisconsin for making the 2017 Sweet Treat Event inclusive for not only Mackie but for any child with food allergy.

Karri  knew about disability due to her nieces challenges and found a barrier  for Mackie and came up with a solution.  Writing this brings tears to this Special Needs Mom's eyes. She provided non-candy treats for every store or business and they were ready for Mackie!  The world is full of challenges and this Halloween she helped me Miracle happen for Mackie.  All 38 businesses in the tiny town of Lancaster went Teal and offered alternatives to food treats this Halloween.

Thank you from a very grateful Mom and from a very exhausted Mackie!

The Great Pumpkin will have to wait for the trade in bucket until Halloween night. But Mackie is fine with that. The Pumpkin Patch is ready and waiting for that Halloween night. And by the way, according to Mackie, there is a Great Pumpkin. The reason why Sally and Linus didn't get any presents, is that they didn't go to bed. He is magic and cannot be seen just like Santa!

Happy Halloween and Mackie and his best friend Furry is ready for the Great Pumpkin and enjoying his treats in the meantime!  If you happen to be in our area on Halloween night stop by and meet Mackie and we are participating in the Teal Pumpkin project and have all sorts of allergy friendly treats.  Our house is marked on the Teal Pumpkin Map at 1246 Park Road in Lancaster, Wisconsin.
Stop by for Treats for Everyone and see Mackie's Pumpkin Patch!

There is still time to stop by Target, Walmart, The Dollar Tree or your local store to pick up a bag of tiny toys, stickers, bubbles, pencils, or Halloween trinkets and paint a pumpkin TEAL and help a child who has an allergy or a special need be included this Halloween.  The Teal Pumpkin Project. 

Mackie in his Pumpkin Patch

Have a very safe and miraculous Halloween!

Love,

Mackie and the Yurceks

Special Needs Adoption and What Will It Mean for Our Kids.

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.

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.

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.  But the out of pocket expenses and deductibles can be expensive.  

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.

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 for our kids.

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.   But our local county system says he is not eligible for any waivers.  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.

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?

He is already eligible for Medicaid and they told me I must pay for him to be covered under a waiver even though he came from the State of Wisconsin.  I found rules that he is category A, and we shouldn't have to.  But the county told me he is not eligible for any waivers due to his disability and they haven't screened him again and this is all in the current system.  

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?

Our president and republican congress do not like entitlements, so what will it mean for those who have taken in some of our nations most vulnerable children?  We were promised an entitlement. 

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. 

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 would thinking twice about signing on the dotted line to adopt.

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 $40,000 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.  But someday we need to save to retire.

The schools get Medicaid funding for helping under Medicaid and will those be affected?  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.


Anny

Postscript:  The state just reduced the amount of ABA therapy that was requested.  Our insurance will fund the major amount and all that would actually go through the state would be the deductible and copays so they actually save money on Mac.  But kids on Medicaid in Wisconsin are being offered less than kids on insurance that is listed on the State of Wisconsin Insurance Mandate.

Wake Up Adoption Community and Start Asking How Block Granting Medicaid Would Affect our Adoptive Familes

When we adopted our children with Special needs from the foster care system. They came with a promise of Medicaid to defray the catastrophic costs of children with special needs, mental health challenges. It has been in important life-line to help our children.

Our children were lucky to be able to be put on our private health care insurance. Before the ACA we had mental health caps of $10,000 per year for my adopted children. I paid privately for most of their care as both insurance and Medicaid would not cover it.  But without the ACA will we go back to the days of limited coverage, lifetime limits and I know of parents whose kids maxed out their health insurance policies for their medically complex special needs kiddos leaving no coverage for their parents and siblings when they maxed out the $1,000,000 lifetime cap for the family.  Many workers back then told families to not put them on their private insurance.  Things were complex.

But with the Repeal of the ACA many questions are being asked? Will they still get coverage after 18 and even more troubling, for those who have adult disabled adopted children they are in jeopardy of being able to stay on their parents plans. What will happen to my children with preexisting conditions if I have to switch jobs? Will they be uninsurable?

We are hearing much about talk about Block Granting Medicaid. Will we lose our entitlement for their health, mental health and dental care if they give the block of money to the states and they change the rules?

What will that mean for the hundreds of thousands of families who took on children from the foster care system with an entitlement to Medicaid and its protections?  What will it mean for the thousands of children currently in the foster care system who are awaiting homes?  According to NACAC over 50,000 children found homes each year and with of Federal Supports of Medicaid and Adoption Assistance helping defray the complex costs of parenting these at risk and vulnerable children.

We were made a promise of Medicaid to help pay for the many therapies, services and equipment that this vulnerable population needs.  Would the states could be allowed to no longer have to provide EPDST (Early Periodic Screening, Diagnostic, and Treatment) under which children enrolled in Medicaid receive both regular check-up and coverage for all medically necessary treatments necessary that they check-up finds no longer be provided and the ability to appeal denied services?

The Federal Government moved these kids into families and now they want to change our safety net?  They made us a promise and they need to think about how it may affect the promises they made to tens of thousands of families who adopted some of America's neediest children.

When is the adoption and foster care communities going to wake up to the fact that our safety net is in jeopardy?  For the families with private adoptions or overseas adoption what will it mean for special needs waivers as they are optional?  What will it mean as they give the states only so much money to service the Medicaid Population will the entitlement that was promised us until we raised these children be honored?

We need to wake up that they are proposing to Block Grant Medicaid and that will give the states authority to decide what services, what money, what they provide this vulnerable population.

What will it mean for Mackie?  He has FAS and they say it will cost over $2 million dollars in his lifetime for care and services.  Will he get his wheelchair next time which they already denied even under the current system?  Will he be able to get his braces or his therapy services? Will they cover his elemental formula at over $75 a day?

 What will it mean for his future?

How many adoptive children who need specialized mental health services due to their traumatic and abusive histories will struggle with getting the mental health and services they need from Medicaid? Will the important waivers still be there?  My Mackie's health  insurance has saved the taxpayers over $60,000 to $80,000 annually in covered services and while our promised Medicaid back up denied most things and to get his formula covered I had to file and appeal for an administrative hearing.
With a block grant, we could lose the right to appeal!

The tragedy of Custody Relinquishment to get mental health services which already had been a problem of the past, is it due to repeated? Insurances still have limits on hospitalizations and ours are only 30 days. Children with severe mental health needs are still not adequately served by insurance companies in many states.  Often times the child after an out of home placement of 30 days can be covered under Medicaid as a family of one, and parents income does not count.  If block grants come in all bets are off as states can make their own rules and cover who they want.  Will our adoptive kids with PTSD, mental health and prenatal exposure challenges have to find themselves in the justice system to get needed help as they begin to RATION federal Medicaid dollars?

We need to speak up and reach out to our legislators and ask these hard questions!

Wake up Adoption Community and learn about what Block Granting Medicaid may mean for the safety net services and make sure they consider our kids needs during their discussions.

Anny

Mackie and Technology: Adapting and Downloading Worksheets for Preschoolers to iPad

Getting ready for Kindergarten and we know that for Mackie to be successful, assistive technology and adapting his worksheets will be necessary. With Mackie's hypotonia, his motor planning issues and even more complicated Chorea and its involuntary movements when he tries to use his muscles. 

For years Becca struggled with getting her written work to paper. Years of a scribe, years of hand over hand with her hypotonia, motor planning issues, and her dysgraphia taught me what she needed and we had to use a scribe, notes, adapting worksheets,  verbal answers and all the low tech solutions to help her.  But those all required dependence on adults to help her.  I will not do that for Mackie.  He will need help in many places, but he also needs to be as independent as possible.

But what he really needs is to learn early on that it is OK to do things differently, instead of doing it just like everyone else and NEVER measuring up.  Becca learned that her written work never was good and that she was different and ashamed of her messy handwriting.  To many teachers faulted her for not trying hard enough, not taking more time and marked her down for trying her best.  But best
was never good enough.

Mackie is growing up in the days of exploding technology and he is tech savvy!  So why not use it to help him!  He knows his way around the iPad and can find absolutely anything he is looking for.

He colors using his dabbers, he has many accommodations written into his IEP and with his IEP coming up planning for Kindergarten I had to get busy and figure things out!

There are coloring apps with built in worksheets he loves to fill in. There are apps for reading, which he will need.  There must be a way for the papers to be loaded onto this IPAD and he can do them on his IPAD.

Searching the internet, I found one and only one set for preschool, kindergarten tutorials on

Transferring worksheets to your iPad

I downloaded Dropbox to my computer.  Searched my Pinterest Preschool Pins

Followed the directions and uploaded a file or two to practice with.

Then heading over to the iPad
Downloaded  Good Notes 4 & PDF ($7.99)
Downloaded  Dropbox for iPad (FREE)

Then followed the instructions on the transferring worksheets to your iPad link above.


Mackie's first worksheet!

I figured there must be a way to be able to download and color through the Good note app.  I used the highlighter and selected a wider width.  Added custom colors for more primary color choices.  One can even erase if they want to change the coloring.  Mackie got it quickly and he was pushing me away and figuring it out all on his own after I had it set up and only a few seconds of trying to help.

My demonstration of coloring using the highlighter feature with the widest width stroke.

On his iPad I screen shot his work and then use email to the teacher!


I am so thrilled with finding and playing with this technology and he will be able to do the worksheets like his friends!  Just a little differently.

I am sharing my learning to his occupational therapist, teachers and while I am at it, to the special needs world.  Maybe it will help others learn and adapt to our kids needs!


Anny