Robert Kramer Guest Blogger Disability Comes In All Shapes and Sizes, and So Do The Denials

Robert shares both a sad and triumphant story about his unrelenting effort to ensure his deceased, disabled daughter, Christine, received the funding and disability services she needed. The moral of the story may be: VOTE and fight like your life or the life of a loved one matters!

"Whether you care for a disabled child, a disabled adult, or a disabled elderly person, you will face denials for benefits or coverage from an insurance company: Medicare, Medicaid, housing authority, or medical provider.

I have been there on behalf of my adult daughter, Christine. Christine hit the trifecta of disabilities, having addiction, mental illness, and a progressive pulmonary disease.

The addiction (and associated disabilities started) at (or before) age 16. We lived in a progressive state and found resources, including ( free) twelve - step meetings (also known as Alcoholics Anonymous or Narcotics Anonymous), psychologists, psychiatrists, social workers, inpatient 28-day programs, and later, longer-term programs. Some of those helped a little, and some not at all. Some had little or no cost "and come from community building". Some had significant costs but were partially covered by her health insurance.

Finally, we found a psychiatrist who connected her addictions to her bipolar mental illness. This began another search for the right drug in the right dosage in the right combination with other drugs, including individual and family sessions with this doctor. (The insurance claims started to add up)

There were always denials. But with each denial came an appeals process. So, we filed the appeal. Then came the second denial. But a second appeal was also available. The second appeal would be reviewed by a person that was not previously involved with the original denial . (This is called "a higher level review" if within the Veterans Administration claims and appeals process) The second appeal was typically denied. I think this may be when many people give up. My mother always used the phrase, "stick-to-it-ness," so that became my mantra. This third appeal was outside the insurance company or agency. It was with an administrative law judge conducted either by phone or in person.

This is a process that is frustrating, time-consuming, mentally-fatiguing and just plain miserable to do. The benefit was and is, these administrative law judges are in fact IMPARTIAL. I have taken FOUR appeals to this level and won them all. (But I prepared) (Success at the administrative review) requires gathering all the necessary documentation, sending in all the forms the agency or company requires and making IT PERSONAL, including a cover letter that brings the situation to life for everyone in the review process.

Christine also had back surgery about 2010. Medicaid provided a home health aide to her originally at 17 hours per week. After six months, Medicaid notified her that the care would be reduced to 5 hours a week. We appealed and got before an in-person administrative law hearing. Medicaid sent a lawyer and a registered nurse to make its case. They approached us and said we should accept a compromise and not risk going to the administrative law judge. Their offer was 10 hours. I declined. They came back later and offered 12 hours, which I also declined. As our name was called by the court clerk, they offered 14 hours and I accepted. We never even saw the judge.

In 2014, Christine's lung disease was diagnosed. It was progressive and incurable. We brought her to a specialized lung center at a large hospital. She had to be on oxygen and consume a cocktail of very expensive medications. By 2016, the disease had progressed so far, by then that only a bilateral lung transplant could extend her life. The lung transplant team would not list Christine because of her mental health medications which would interfere with the anti-rejection drugs and because she was overweight.

I asked specifically what medications had to change and how much weight she needed to lose (in order to be placed on the transplant list) We worked with her other doctors to make the necessary changes and Christine lost the specified weight. She (became eligible for the lung transplant) in July and had her transplant in December.

There is no happy ending here. She had about two years of freedom from oxygen with a regimen of 60 pills a day, until the lungs were rejected despite (taking the anti-rejection) drugs. Christine died in April, 2019 at 46 years old. She was no longer an addict and her mental illness was well-managed.

When dealing with your own situation, Robert says, view a denial as an obstacle that you need to overcome."