Tag Archives: disability

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.

 

 

 

Rare, but together we are mighty

When your child is diagnosed with a rare syndrome, you are at first overjoyed: YAY! We know what “this” is! Then you are back to being overwhelmed: What do they mean they don’t know what “this” is! A parent who spent years searching continues on, looking for answers, looking for a cure and (most desperately) looking for someone who has been there before who can give you a road map.

I spent the first five years of Bridget’s life without a road map.  Not one doctor could tell me anything other than, we know something is wrong but we don’t know what it she has. Years of seeing doctors and specialists who would tell us that we are doing everything possible to make Bridget the best she could be, and to keep up the good work.

Then we were diagnosed with PACS1.

Journey over, right? Um how about it was just beginning. Continue reading