advocacy, Affordable Care Act, women's march

#WhyIMarch

President Trump took office yesterday and his very first order of business was to sign an executive order to “relieve the burdens of Obamacare” – or something like that, paving the way to repealing and replacing the Affordable Care Act.

The multi-part executive order stated that the administration’s official policy is “to seek the prompt repeal” of the Affordable Care Act — but at the same time emphasized that it must continue to uphold the law.

MJ Lee and Tami Luhby, CNN  Fri January 20, 2017

On the second day of his presidency, we took to the streets. My daughter has the right to healthcare and I am doing all I can to protect it.  I gathered with about 100 women, men and children to send off the marchers to DC and NYC and peacefully request we be heard by the current administration.  We were supported fully by police officers, who kept the streets clear, the area safe and our right to assemble upheld.  Thank you, Wyckoff Police Department.

I walked away from the peaceful rally with a renewed sense of purpose.  Our time has come to fight for the things we hold up as cornerstones to our democracy and intrinsic American values.  I have just begun to fight.  My children will have a safer and healthier world – because I am going to make it that way.

Big shout out to the people peacefully marching and making their voices heard today!  To a bright future for all!

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advocacy, Affordable Healthcare Act, autism, politics, Uncategorized

The Danger of Repealing the AHA

obamacare

This is not about politics.  This is not about partisanship.  This is not about a political vendetta.  This is not a game.  This is about survival.  People cannot afford to go to the doctor or receive treatment without affordable healthcare insurance.

For so many Americans, health insurance has been difficult to obtain.  In my child’s case, she has a pre-existing condition that also requires constant medical attention.  She has autism.  Prior to the Affordable Healthcare Act, our family was nearly bankrupt with healthcare premiums and medical bills. Now, she is guaranteed coverage (autism is covered under the AHA) and the costs are much lower.  We are middle-class and we make too much money to qualify for Medicaid and too little money to fund her frequent doctor appointments, ER visits and daily therapy.

The pre-Obamacare days were the Dark Ages of medical care for my child.  None of our medical expenses associated with autism were covered – not even diagnostics.  My husband turned down several jobs because the insurance offered did not include autism coverage. We had a policy through non-profit group and our policy was discontinued.  When we searched the market and found a policy that would cover us and our daughter, our premiums were astronomically high — $3200 for a family of three plus no out-of-pocket maximum and high co-pays.  I was pregnant and needed monitoring because of a complication.  We could not afford not to have health insurance.  Once Obamacare was instituted, we paid $1500 a month, our daughter’s autism therapy was covered and she could have therapy every day.

Why is Congress seems to be in a rush to repeal the AHA?  There are no focus groups to explore the pros and cons of the AHA.  There is no published research on what works and what does not work.  There are no referendums.  No polls.  Like rabid dogs, Congress is poised to decimate the Affordable Healthcare Act in an act of sheer vindictiveness when the President-elect takes office.  There is no plan to replace the AHA with something better.  It is just going to die, leaving most people without healthcare coverage, a lot of unpaid medical bills and the medical industry in financial turmoil.

And for what?  Vengeance?  Victory over the other party?  Destroying a legacy?

Is my daughter so horrible that she deserves to be stripped of her ability to obtain affordable medical care without the fear of being rejected for her diagnosis?  And what if she is denied by a carrier?  She will not have therapy.  She will regress and lose the skills she worked so hard to attain.  We went to the emergency room four times last year because my child will not swallow medication.  She had to get shots of antibiotic every time she got strep throat or bronchitis.  All of those ER visits add up, even with insurance.  And to take a broader look, there are 1 in 44 children diagnosed with autism in the state of New Jersey.  Kids with autism have more hospital visits, associated disorders like seizures and injuries.    What will happen to this generation of children with autism who go untreated for emergency situations as well as recommended therapy?  It is vital to rescue this generation and lift them up so they can be contributing members to their communities.

That is just our personal story.  I am sure there are so many other stories of people who need constant medical care, have pre-existing conditions, are self-employed or work in the service industry.  Middle class families whose employers do not offer autism coverage, depend on AHA for medical coverage.  Why punish hard-working families because they make too much money to qualify for Medicaid and too little to self-fund?  With so many Americans vulnerable, how can we afford eviscerate healthcare insurance coverage without ensuring a comprehensive, affordable and inclusive solution to take its place?

 

 

advocacy, insurance, politics

Hey Paul Ryan and Mitch McConnell, THIS is who suffers if Obamacare is repealed…

In 2009, our daughter was almost two years old and recently diagnosed with autism, a pervasive, neuro-developmental disorder.  We received a letter from our insurance company stating that our daughter would no longer be covered under our policy and our policy was cancelled.  Our carrier did not offer a policy that covered any diagnostic or therapy for autism. We scrambled for insurance and bought a private policy that would cover her under the NJ State insurance mandate on autism.  The cost was over $3000 a month in premiums – and there was no cap on out-of-pocket expenses.  She required therapy five days a week, two hours a day to develop and maintain basic life skills we all take for granted.  She also had other issues like sleep disturbances and mobility issues associated with autism.  Our daughter needed medical attention for her disorder.

Once Obamacare became law, we were able to get a family policy for less than $1500 that ensured our child’s therapy would be covered. We now have her on her own policy through the healthcare exchange for less than $200 a month.

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Today, House Republicans moved forward to repeal Obamacare, an act of vindictiveness by a group of rich, white men who all have guaranteed medical coverage for life through their employer, the US government.

If Obamacare is repealed with no plan for comprehensive, affordable and inclusive healthcare to take its place, children like our daughter suffer.  A complete repeal would give the insurance companies power to reject an individual based on a pre-existing condition.  So anyone with a catastrophic illness or disorder, past or present, could be denied coverage.  Heart attack? Cancer? Mental illness?  All are fair game for denial.

Paul Ryan, what if you are one of the millions of people who have health insurance through the healthcare exchange?  What if you make too much money to qualify for Medicaid and make too little to afford a policy offered by one of the major carriers?  What if you have children?  What if you are a student, a freelance artist, a waitress or a home health aide and your employer does not offer insurance?  What do you do?  There are no affordable options.

No one in Congress who wants to repeal Obamacare is concerned about the Americans who will be without insurance.  They are only concerned with destroying a legacy and defeating any progress by another political party.  Is sacrificing the livelihood of the American people worth it?

So Paul Ryan, Mitch McConnell and the others who want to repeal Obamacare, look at this face.  ava-elksMay her face haunt you forever.  You are playing with the livelihood of so many people – and for what?  So that you can smirk and say you personally had a hand in defeating Obamacare?  You have no replacement for the AHA that leaves millions vulnerable.

Why not offer our daughter and people like her your health insurance or give up your insurance in solidarity with the many others who will be without coverage?  Destroying Obamacare without an affordable and inclusive replacement, preys on those less fortunate than yourselves, all for a partisan victory.

Shame on you.

 

 

autism

Anniversary

October 27 marks the seventh anniversary of my child’s autism diagnosis.  There is no cake.  There are no presents.  There is no celebration.  It is a day to reflect…

My daughter was 19 months old and after waiting two months for an appointment with a developmental pediatrician and calling every day hoping for a cancellation, we were granted opportunity to get answers to our child’s detachment from the world.

ava 18 months

She never responded to her name.  She did not know we were in the room most of the time.  I smashed dishes on the floor and she did not flinch.  However, when I put Sesame Street on the tv, her ears perked up and she looked toward the sound.  She never talked.  She said a few words here and there, but they were never consistent.  She ran up and down the hallway repeatedly.  She cried when we were in crowded stores or noisy places.  She hated every Mommy & Me class and screamed until I took her out.  She put everything in her mouth and chewed her books, ate dirt and licked the floor all the time.

I remember the day of her diagnosis so vividly.  It was a dreary, chilly, blustery October day.  The sky was dark grey and there was not one tiny ray of sunshine peeking out of the clouds.  I bundled her up in her new winter jacket.  I wore slacks and a sweater – and heels.  I thought dressing up would encourage a bright outcome.   I knew what the doctor was going to say, yet I held out hope that it would be a positive prognosis.

We went to the Children’s Hospital at Hackensack Medical Center.  We were led down different hallways to see various administrators prior to her evaluation.  They determined our insurance will pay nothing and charged a $500 office visit to our credit card.  Autism is expensive — and this was the first of many expenses we would incur.

The doctor led us in to a small examination room that had some toys, a small desk and some chairs for adults to sit on.  My daughter made a bee-line to the electrical socket which was at her eye level.  I scooped her up before she could put her hand in the tiny holes.  I shook my head — shouldn’t they obscure that with childproof outlet covers?  It’s a CHILDREN’S HOSPITAL!  The doctor brought out a small desk and we sat our daughter down in the chair.  The desk folded over to close in on her so she could not escape.  She began to squirm and whimper.  The doctor tried to go through different exercises and give her puzzles and problems to solve – like getting a pom-pom out of a bottle or re-arrangning shapes. It did not go well. She put the puzzles in her mouth.  The only task she did complete was lining up some blocks.  She grew more and more agitated and made eye contact with me for a brief moment as if to say, “Help me, Mommy!”

After less than 10 minutes the doctor turned to us and said, “Your daughter is on the spectrum.” I knew it.

Family and friends told me I was crazy when I had suspected my child had autism.  Some suggested I wanted attention or was looking for something that was not there.  It was all too apparent to me.  My daughter did not have any of the skills and did not interact like other toddlers her age.  It was painful for me to see other children — I kept asking myself, “why isn’t my baby talking like that other child?”

Part of me was happy to hear some validation.  YES!  I can tell all the nay-sayers that I was right!  I am NOT crazy!  I am not craving attention or making things up.  I have intuition.  I know my child.  I AM RIGHT!  I do not have Munchausen Syndrome by proxy!  I am not one of those crazy moms!  But that feeling of victory faded in a second when I realized I did not really want to have my suspicions validated by the truth.

I cautiously asked, “How bad is it?  What’s her prognosis?”

The doctor sighed.  “Well, we do not have a crystal ball. She may improve but we just don’t know if she will ever go to college, get married, be able to live on her own or take care of herself.”

Boom.  Someone shot me in the heart.

“What?”  I started to hyperventilate. My baby.  My sweet, beautiful, innocent baby.  AUTISM?  Never get married?  Never have children?  Never go to college?  I dismissed each one.  Except: never be able to take care of herself.  The reality of autism finally hit me.  Autism.

The doctor was empathetic but I know she expected my reaction as I expected the diagnosis.  “Your daughter has autism.  She needs treatment.  Children do improve with treatment.  However, we do not know how much she will improve.  She has the language skills of a three-month old.”

I sat there stunned and from then on I do not remember much.  I know the doctor gave me a referral to see their social worker and to get our daughter physical therapy at their center.  But we congenially gathered up our child, who now was happy and quiet because we were leaving, and we left.

It seemed colder and bleaker as we walked to the car.  The sky seemed to close in on us.  The wind whipped with more force.  My eyes teared up.  We sat in the car for a few seconds in silence.  We reassured ourselves that we would get her therapy and she would be fine.  She would be fine.  Yes.

Unfortunately, the doctor did not explain the enigma that is autism in depth.  I woke up the next morning and stared at the ceiling.  Where do I start?  What do I do?  How can I save my child?  Why did this happen?  What is happening?

I was lucky to have people in my life who were very knowledgeable about autism and who could guide me in the right direction.  After a few days mourning the dreams I had for my daughter, I mobilized to get her what she needed.

And now, seven years later it is apparent she will probably not go to college, get married, have children or be able to take care of herself. However, we have been witness to her many talents and abilities.  She has autism and it cannot stop her from being who she is.

 

Uncategorized

The Future of the Disabled in the Age of Trump

disabled

You’re a crybaby.

You’re a sore loser.

Stop whining.  You lost.  We won.

I’ve seen and heard people hurl these phrases at others who are dismayed with the election results.  As a person who cares for her disabled child, I am not going to talk about any of the other social issue that concern and disturb people – and there are many social issues stemming from the pre-election rhetoric. This is about the future of the disabled in the age of Trump.

I did not vote for Donald Trump. I had many reasons but one considerable factor was that I voted for the person who actually had a plan for the autism community.  Hillary Clinton had a plan that stretched across the lifespan of someone with autism – from early diagnosis and treatment to employment and housing for adults.  I felt it was a step in the right direction.  I wasn’t interested in “Making America Great Again”.  America is already great.  I am interested in making my disabled child’s life great now and in the future.  She deserves the same chances as my neurotypical child.

So am I a whiner because of my disappointment with America’s choice as its next Commander in Chief?  I am concerned for my child’s future.  And the election of Donald Trump worries me.

He Wants to Dismantle the Department of Education

During his campaign, President-elect Trump repeatedly hit out at the role of federal government in education, arguing instead for increased local control of schools, and hinting that the Department of Education (ED) should be abolished.

from Business Insider November 30, 2016

So let’s examine that.  He wants to make schools local and all decisions come from the local district school boards.  To ensure a child with a disability has an education, we have IDEA:

The Individuals with Disabilities Education Act is the federal law that outlines rights and regulations for students with disabilities in the United States who require special education. Under the IDEA, all children with disabilities are entitled to a Free Appropriate Public Education (FAPE) in the Least-Restrictive Environment (LRE), and some are entitled to Early Intervention (EI) and Extended School Year (ESY).

from Verywell.com May 9, 2016

The IDEA law and FAPE define that school can provide or deny services for children ages 3-21 with special needs or disabilities and parents can fight for the provision of these services.  In other words, it ensures my child, who has a disability, can get an appropriate public education for free.

The dissolution of the Department of Education would leave school districts accountable to no one and no one would be there to enforce that these laws are being upheld.  My daughter would be at risk of losing her right to an education.  An individual district can put her anywhere and “educate” her – even it does not have the resources to do so.  In the past, special education students were herded into one room, set apart from their peers.  I cannot imagine going back to that poor-functioning model.

Donald Trump’s pick for Attorney General, Jeff Sessions, the person nominated by the President to protect ALL of its people, said about IDEA:

Sessions said the federal special education law was too lenient and allowed “special treatment for certain children,” which was resulting in the acceleration of “the decline in civility and discipline in classrooms all over America.”

from Snopes.com

Sessions, Jeff. “EDUCATION DISCIPLINE AND IDEA.”
U.S. Senate Floor speech. 18 May 2000.

Trump Picked Betsy DeVos as his Secretary of Education

Betsy DeVos is a billionaire advocate for private education vouchers and charter schools.  My daughter attends a private school for children with autism ages 3-21.  Oh, that should be great for us, right?  No.  Our daughter attends a private school and her tuition is funded by our local school district that cannot accommodate her because it has no educational program for children with autism.  If our local school district receives less money, it cannot send her to a private program that can accommodate her.

Mrs. DeVos also is a proponent of for-profit schools, a concept that should have no place in the education of any child, let alone a child with a disability.

Trump Mocked a Reporter with a Disability

Do we have a window into the id of Donald Trump by his gross display of mocking a person with a disability in a public forum?  Is that how he treats the disabled?  Are we going backwards after such progress from hard-fought advocacy?  I was a warrior to get my daughter the best education that accommodates her needs.  So am I a sore loser for my doubts about the Trump Presidency?  Should I give him a chance?  Disability Rights have been bi-partisan for many decades.  Doing away with IDEA and FAPE would be disastrous for the futures of a generation of disabled children.  And personally, not having a plan for autism – only relating it to vaccines – will not solve the problems of this growing population nor improve lives of those with autism.

Now you know my trepidation.  Now you know that I fear for my daughter’s future. I am not a sore loser.  I am not a cry baby.  I am not a whiner.  I am voicing concern – a concern we should all have.  Many disabled people cannot speak for themselves.  They need advocates like me – like you.

Uncategorized

When Did You Know…?

When did you suspect your child had autism?  I get that question all the time.

At two weeks old, I was holding my daughter after feeding her.  She looked up into my eyes.  We maintained a gaze together, so engrossing that I felt myself lost in her.  She was perfect and I felt such joy.  After a few seconds, she broke our connection. Her eyes were far away.  It was as if she drifted away even though I was holding my face close to hers.  I had a feeling that something was wrong.  I thought it was new mom paranoia.

A year and a half later, that feeling  was validated by an autism diagnosis.  My daughter developed typically until she was about 10 months old.  Then we saw behaviors surface: she would make a funny face when she was excited or happy,  she walked late, she slept very little, she did not respond to her name or to our voices.  We thought it was cute and thoroughly normal.  At a year old she had a few words: “baby”, “cat”, “duck”.  At fifteen months, those words were gone.  I would smash things on the floor to get her attention and she would not flinch.  We thought she may be deaf.  However, when we played Elmo’s theme song, her face would light up or she’d come running from the other room.  She was not deaf.

At 15 months I took her to a music class with other babies.  She preferred to walk in circles or eat the instruments rather than participate. The teacher, who was not very professional, said “What is wrong with her?”  I was highly offended and did not go back to class.  So I took her to a gym class and the other toddlers were singing, dancing and climbing all over the equipment.  My child licked the floor and then cried hysterically for no apparent reason.  When I took her out of the class and put her in her car seat she babbled happily.  I knew something was wrong.  I cried in the car that day.

We told family and friends about our fears.  Some people dismissed us as being “over reactive” or “wanting attention”.  We were subject to anecdotes of delayed development and claims that “so-and-so was a late talker, too”.  I knew something was wrong with my child.  She was not just a “late talker”.

What perplexed me was that she was so happy.  She would play with her toys for hours.  She knew every song on her videos.  She loved to cuddle and was so affectionate.  How could something be wrong with a child so loving and happy?

Her developmental pediatrician took less than ten minutes to come to the conclusion that my child had autism.  The doctor told us it was a life-long affliction.  She told us that our child needed intense intervention.  She told us that she may never speak, go to college, marry or live independently.  All my dreams for my child were snatched away by those three words: she has autism.  I remembered looking into my daughters eyes and watching her slip from my gaze. That moment haunts me.  However, it drove me to get her the help she needs.  Always trust a mother’s instinct.

 

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Uncategorized

In Support of Technology

I hear people click their tongues in disgust and roll their eyes when they see my daughter immersed in her iPad when we are out in the public. I hear people, mostly parents of neurotypical children, criticizing other parents for allowing technology in our children’s lives.

Technology has saved our lives. It allows my daughter to be who she is, The world was dark before the iPad. She is learning to type. She is learning to read. She has learned to animate a cartoon by using an online animation program. She composes scores to her home movies. And this is self-taught because of the intuitiveness of the iPad and Mac.

Yes, technology can be overused by some parents – like TV was when I was a child. But technology does amazing things like this…

 

 

Uncategorized

The Medical Challenge

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My child has autism.  She was diagnosed over six years ago.  There are 1 in 68 cases of autism among children in the United States.  In my state, it is 1 in 44 children are diagnosed with autism.

In my experience as a parent of a child with autism in the great state of New Jersey, the medical community, especially the support staff such as nurses and medical assistants, need training and education in autism.  They are clueless.

Last weekend, my daughter refused to get out of bed. She is essentially non-verbal but managed to muster out, “I want doctor.”  She was clammy and listless.  Her eyes were at half mast as she cried out, “Bye-bye in car.  Want doctor.”  She had a fever of 102.

I took her to the walk-in urgent care clinic because her pediatrician’s office was closed.  The staff treated her kindly and was patient with her.  The doctor examined her and said, “It is just a virus.”  He was very respectful of her.  He showed her the instruments before he examined her.  However, he dismissed the severity of her illness.  I didn’t want to leave the office without treatment of some sort — she never has a fever!  I told him she was not eating.  So he did a strep test.  Positive.  I am happy I advocated.

He prescribed a 10-day dose of liquid, chalky-textured, bubble-gum flavored Amoxicillin.  Yuck.  My child eats 10 things.  Amoxicillin is not on the menu.  “But she won’t take medicine.”  I was told to “mix it in applesauce”.  Bright pink, bubble-gum flavored, chalky-textured Amoxicillin – in APPLESAUCE.  Oh, that is right – a child with autism won’t detect that her applesauce has changed.  And furthermore, SHE DOES NOT EAT APPLESAUCE!  She never has.  I do not think she ever will.  She has AUTISM.  She knows when things are different and she does not like different!

I tried to get her to take the medicine.  I begged.  I pleaded. I put it in her yogurt shake – Trader Joe’s probiotic yogurt drink.  She took one sip and handed it back to me.  I tried to force it on her.  She threw up.  Serves me right.

I called her primary care pediatrician’s office and asked if the doctor could administer a shot.  The nurse said, “We don’t do that.”

“But she won’t take her medication and she has autism.”  She is getting sicker.”

“Put it in applesauce.”

I tried to appeal to the nurse.  I told her that my daughter eats 10 things and I cannot disguise it in her food.  She told me that the office couldn’t treat her because she was seen by another doctor.  I told her I could send over the records.  It has been done before.  She flatly said, “Sorry.  I don’t know what you are going to do.”

I called the walk-in clinic and begged them to prescribe the antibiotic in a suppository.  They did however, the pharmacy was not open.  When the pharmacy opened I called and asked if my daughter’s prescription was ready.  “No, we have no record of a scrip for your child.” I called the walk-in clinic and the nurse who called the prescription was not there.  They had to wait for her.  But what about the doctor?  They put him on the phone.  The first thing he said to me was, “Well, the nurse who called it in isn’t here.  We will wait until she gets in.”  I said, “Doctor, you can call in prescriptions, can’t you?”  He reluctantly  admitted that he could call in prescriptions.  My husband picked the suppositories up on his way home from work.  I read the instructions, “TWICE A DAY FOR 10 DAYS???!!”  How am I going to administer a suppository to my sleeping child, who, at best, sleeps four hours a night?

At this point my child was without medication three days after she was diagnosed with strep.  She was sicker.  She still had a fever of 102.  She couldn’t walk because she was so weak.  She stopped communicating.  Her eyes were glassy and her skin was pale.  She had deep circles under her eyes.  She could not tell me she was in pain or did not feel well, but it was written all over her face.  I took her to the Emergency Room.

The ER doctor knew how to deal with a child with autism.  She prescribed an injection of penicillin.  My daughter did not flinch when the shot was administered, but was upset about the band-aid.  I was told she would be better within a day, hopefully.

The next few days she got progressively worse.  High fever, lethargy, clammy skin, gooey eyes.  She lay on her bed all day, staring at the wall.  We called the pediatrician again and spoke with the same nurse who told me the doctor could not help my child . She left word with the doctor who called us back within minutes  She told us she would have two injectable forms of an antibiotic called in to the pharmacy and we were to pick them up and bring them to the office for her to administer. Boom.

Oh, so they DO give injections in the office and she CAN be seen even though she was seen by another doctor.

Maybe it was poor customer service.  I don’t know.  What I do know is that it is a lack of understanding of children with autism.  Doctors are trained to screen patients for autism and refer the children to neurologists or developmental pediatricians.  However, support staff are not.  I had one medical assistant bark at my child to “Stand up straight on the scale.” Of course, my daughter has severe auditory issues and cannot understand vague things like “stand straight”.  The medical assistant yelled, “I SAID stand up STRAIGHT!” I went over and modeled how to stand for my daughter.  She took the visual cue and complied.  When the medical assistant put the clip on my daughter’s finger to take her blood oxygen level, my child took it off.  She snapped, “Keep it on!” I said, “You do not have anything autism-friendly?” The M.A. rolled her eyes.  “I have to prick her finger, then.”  I said, “Go ahead, she doesn’t feel pain, that will be easy.”  And it was.  My daughter was not crazy about the band-aid, but that was ok.

I am lucky my child willingly goes to the doctor.  Some children with autism will not walk through the doors.  My daughter likes the doctor and will tolerate an injection, but light touches bother her.  Don’t they understand that?  And most medical support staff I have encountered at pediatrician’s offices have a know-it-all, holier-than-thou attitude.  So it is difficult to explain to them, “My child doesn’t like the feel of a band-aid or the sensation of the finger clip on her finger.”

With proper training and assessment of a child’s limitations, a doctor’s visit will go very well for kids like my daughter.  We work on medical office etiquette with her in school.  We teach her how to sit up and let the doctor listen to her heart, look in her ears and take her blood pressure.  However, she can’t be generalized.  She has sensitivities some other kids, even kids with autism do not have.

And if she can be trained to go to the doctor and participate in the exam, neurotypical medical staff can be trained as well.  My child is entitled to respect when she gets medical care.  She is also entitled to high-quality health care, as we all are.