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Showing posts from March 20, 2011

One of the Lucky Ones

I want to celebrate the 1-year anniversary of the passing of the ACA. I celebrate it for the HUGE potential it has for my family. And I wish to celebrate the provisions that are already helping us. I'm the mom of two wonderful children, both with disabilities and special health care needs. I celebrate the fabulous joys and gifts they have brought to my life. But let's face it: a HUGE portion of my life is now taken over by dealing with the financing of their health care. It chews up large portions of my time, and it adds enormous stress and guilt to my already highly stressful life. But I'm one of the lucky ones. You see, my husband has a job that brings in a good income. (I used to, before I stopped working to care for my kids – but that's another story.) And we have "good" private insurance. And the ACA is working to ensure the continuity of coverage we so desperately need to remain off of public assistance programs. What does that look like? W

We’ve Already Benefitted

As we approach the anniversary of the Affordable Care Act (ACA), I would like to express how it has and will impact me and my family. To give you some background, my 25 year old son was born with a rare, “orphan” condition which requires that he be on ventilatory life-support since birth. He was hospitalized for 6 months from birth, came home with home care nurses as we embarked on this journey. He was the youngest child in the Home Ventilator Program at Riley Hospital at that time. As most young parents who haven’t had much experience with illness and medical insurance, we were not extremely well informed of what our private health insurance covered, and totally ignorant of public programs. Since our private insurance didn’t cover tens of thousands of dollars of the initial hospitalization, we quickly became interested in what our government could provide! Unfortunately, our family was over-income for any available programs and Medicaid Waivers weren’t available in Indiana at that ti

Our Future Looks Bright

Raising two children with serious and often life-threatening medical issues has changed the way my husband and I think about and plan for the future. You may be surprised to learn that it actually means we focus more on the future; looking ahead and focusing on the big picture helps us deal with crisis situations and everyday challenges by putting them into a broader perspective. One year ago today, with the passage of the Affordable Care Act (ACA), the future possibilities for each member of our family changed dramatically: • Now that insurers cannot deny policies to children with pre-existing conditions we are no longer job locked and can explore career advancements. In fact, I will be starting a new job, with benefits, this spring; • The removal of annual and lifetime benefit caps for children and adults means that we can manage our household budget without the constant burden of economic doom constantly looming over us when our children exceeded their annual and lifetime cove

Given My Family A Peace of Mind

The difference that ACA makes to my family is insurmountable. Both of my children have neurological disorders which not only affect their development but their overall health. Because of ACA my husband and I are free to explore career opportunities without having the fear of losing health coverage for our children. Each hospital stay is no longer further complicated and stressed with the fear that this may be the visit that gets us to the lifetime max. We no longer have to ask ourselves "what will we do when they no longer have health coverage?". ACA has given my family a piece of mind that no other recent legislation has been able to give. Heather Dane Indianapolis Indiana

It Means We Can Always Contribute

In all the fuss about health care reform, I’m afraid many people have lost – or never knew about – the many cost-effective, life-saving, economy-contributing measures in the Affordable Care Act. It will allow a lot of people to live, work and contribute to society. I know that is the case for my family. My 11-year-old son has a number of special health care needs. His nearly four-year fight with childhood cancer, and his other and related conditions, have meant two things for him and our family before the Affordable Care Act: he would be uninsurable under any new plan for the rest of his life because of pre-existing conditions, and his existing private insurance through my husband’s work would expire before he ever graduated from high school as a result of reaching his lifetime maximum coverage. At that time, with his own insurance maxed out and with no ability to gain new insurance due to his pre-existing conditions, and with limited options for high-earning work due to his disabiliti

I used to think America’s health care system was fine.

I used to think America’s health care system was fine. I was single, with a teaching job, with good benefits. In fact, I wished that I had more money in my pocket as opposed to the health insurance I accessed maybe once a year. That all changed when I became a mother… Despite doing everything right during my pregnancy, my child was born with two rare genetic syndromes. As she struggled to survive, my husband and I struggled to figure out how we were going to meet her long term needs. She was approaching half of our lifetime cap for private insurance before we even got to take her home from the hospital. And when she did come home, we still had out of pocket costs for specialized formula, specialized equipment, etc. Adding to our financial stress was the fact that I needed to quit my job in order to take care of Grace. Fortunately, in her first year of life, a social worker helped us obtain the Aged and Disabled waiver under Indiana’s home and community based services. It allowed her to

We Were Able to Obtain a Policy

The ACA has had an incredible impact on my family. My daughter Maddy has a mild form of Cornelia de Lange Syndrome (CdLS) and Pervasive Developmental Disorder, Non-Specified,( PDD NOS). Although she has speech and other developmental delays, she rarely has any need for medical care beyond typical 9 year old well and sick visits. My husband became self employed in the Fall of 2009, so we needed to obtain our own health insurance. Because of Maddy’s diagnosis, i.e. pre-existing condition, we either were rejected by insurance companies or had to pay triple the cost of the members of the rest of our family for equivalent coverage for Maddy. After September of 2010, we were able to obtain a policy that was fair and reasonably priced. Even though health care costs continue to rise, we now had peace of mind, knowing that Maddy would have adequate health coverage. I am also comforted by the fact that Maddy can remain on our policy until age 26. Because of her delays and challenges, s

The Affordable Care Act

Today, March 23, 2011 marks the one year anniversary of The Affordable Care Act. As we celebrate the impact this law has had on our members we share an overview of key aspects. The Affordable Care Act View more presentations from Family Voices Indiana