Tag Archives: children

Yes, it’s complicated

Dear Mr. President,

After an eventful first month in office, your office has determined to undertake an overhaul of our healthcare system. Specifically, you and the House Republicans want to repeal and replace the Affordable Care Act (a.k.a. Obamacare).  It seems you are now realizing that dismantling the ACA is not going to be as simple as creating an Executive Order.

Nobody knew healthcare could be so complicated“-President Trump

Actually, Mr. President, thousands of special needs parents could have told you that. If only you had asked.

It’s complicated when a child in Dallas can not receive the same healthcare services as a child in Boston.

It’s complicated when a parent has to complete an application for Medicaid, every year, so that her disabled child can continue to participate in the program.

It’s complicated when a family determines where they will reside based on the healthcare their disabled child will receive.

It’s complicated when your teenager in New Jersey needs diapers and insurance will not cover them, but if only they lived in California the insurance would cover the expense.

It’s complicated when a child has been on the same medication for five years, yet every year the doctor has to complete a prior authorization form proving his patient still needs the medication.

It’s complicated when one insurance company covers ABA therapy, but another one doesn’t.

It’s complicated when an insurance company covers one body part/diagnosis per life-time,  yet a disabled child will fall down the stairs more than once when learning to walk.

It’s complicated when we have insurance through our employer, yet we have to pay additionally out of pocket for Medicaid for our children to receive care.

It’s complicated when a parent has a medically complex child and has to fight the healthcare system for their child to succeed.

It’s complicated when your child needs to see an orthopedic but needs to see two doctors for approval before the appointment can be made.

It’s complicated when a child who needs a wheelchair is only eligible at minimum every five years for replacement.

Yes, Mr. President, our healthcare system is complicated. Only those who have never had to access it’s programs are naive enough to think otherwise.

The ACA is not perfect, Mr. President. There are many improvements that can be made to the program. For example:

  • Once approved as permanently disabled, cease the annual application process.
  • Make durable medical equipment, therapies and treatments universal and not dependent on what State you reside in.
  • If a person is approved for a medication once, let that medication order stand.
  • Change Medicaid to a Federal program, rather than a State program, thereby covering disabled persons when they travel.
  • Cover genetic testing for any child with an unknown diagnosis.
  • Demand that Big Pharma bring down the cost of prescriptions. No one in America should have to pay $1029 (a month) for a medication that is free of cost in the U.K.
  • Cover ABA therapy for all children, not just those diagnosed with Autism.
  • Have every elected official enroll in the plan that is created, so they feel the same limits their constituents may encounter.

Yes, Mr. President, healthcare is complicated.

The ACA is a good start. It covers preexisting conditions, a disabled child is now covered if their parent’s plan changes. It covers children to the age of 26, allowing a disabled child to be less taxing on the Medicaid system. It holds physicians accountable. It covers more screenings and preventative care.

Healthcare is complicated, Mr. President but it needs to be improved and not dismantled.

I implore you, don’t limit your team to just hearing from big Pharma and elected officials. Like yourself, they may never had to worry about having medical care covered. Listen to the true stakeholders, your primary responsibility. Listen to the American citizens who are effected by the “complicated” healthcare system, every moment of their day. Bring us onto the panel, as an active voice, so we can tell the Republican and Democratic leaders how a change will impact real people.

Yes, Mr. President, healthcare is complicated. But not more complicated than anyone could have imagined.

Just ask any parent of a child who has a disability.

 

 

 

I have two kids and two parenting styles

Today I am so very honored to be featured on SheKnows Media,  discussing how when you have your first child, they are barely out of the womb before someone will ask when they will have a sibling. I would always say never. I could not imagine sharing the love I had for this child — nor having the patience to deal with another one. For years, I was told I would love both children equally but differently. Five years later when — surprise! — that second child was born, I finally understood what “equal but different” love meant.

To read more, click here

If only…

If only there could be a conversation, rather than a debate about gun control. Let’s take the politics out of the conversation. Instead of having talking points designed to “stir up the base” what if both sides just took a moment and created a dialogue. If only we took out the extremes and found the middle ground. Imagine instead of reading this:

Pro-Gun Control: The NRA is killing your children and we must ban all guns
Anti-Gun Control: The Liberals are taking your guns and your children will be killed

Neither statement is true, in my opinion.  The Pro/Anti monikers could be interchangeable with Anti-Gun and Pro-Gun ownership.  Let’s take off the labels and consider instead the conversation went like this:

Person: I’m concerned about the amount of gun violence in our country. I feel there must be something we can do, as a society, to make our homes/schools/towns safer.
Person: I’m concerned about that as well (aside–who wouldn’t be?).

Imagine how the conversation would progress if we started as common stakeholders in our community’s safety? Continue reading

1000 Speak, well more really

About a month ago two bloggers had this idea: to flood the internet with stories of compassion. To battle back the dark news, the horror of this world and show that there is still good to be had. The date was chosen, Feb 20th and the rallying cry was heard: Let’s get 1,000 bloggers to talk about compassion.

They didn’t get 1,000 bloggers though.

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TBT–Kaylee is determined to Pay It Forward

Today’s Throw Back Post is about my friend Kaylee. A girl who is an incredible hero. Once again she is participating in the Polar Plunge to support Comfort Zone. The camp that allowed her a safe place to grieve and to grow. Please consider to once again donating to her cause. No child should lose a parent, but if they do then they need places like Comfort Camps. Her plunge is coming soon, Feb 28, 2015. Given the current arctic winter we are having, I am hoping she doesn’t have blizzard conditions!

I am in awe of children. Children who want to make a difference in other’s lives. Whether it is a huge movement like Malala or providing comfort for another child. I would like to introduce you to a beautiful seventh-grader named Kaylee.

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Name change

At the beginning of the summer we took Bridget to see a Specialist 20 hours away from our home in the hopes to find an answer to Bridgetitis. We had gone on a search for our own Dr. House. We allowed them to perform Exome sequencing, where Bridget’s DNA would be (in layman’s terms since I really am not a scientist) broken down and reviewed by computer strand by strand allows the scientist to discover where the gene may have gone awry.

We got the results. Finally. Continue reading