Paralyzed former prep athlete sees health coverage run out

[cassiesmom]

This makes me just see red. He can no longer afford to have helpers take him to his former school to give pep talks or volunteer as a coach. Somehow, I don't see either of those as medically necessary. Did he really need nurses in his home round the clock the entire time? Does he think someone is just going to pop up and give him another $5 million? Where was the insurance company in all of this, making sure that $5 million went as far as it possibly could? Guess what, Mr. Clark... not everyone who has a spinal cord injury gets this golden ticket.


Paralyzed former prep athlete sees premium health coverage run out
After nearly a decade, $5 million insurance policy has come to an end

March 01, 2011 | By Lolly Bowean, Tribune reporter

In the days after a football injury left Eisenhower High School running back Rasul "Rocky" Clark paralyzed from the neck down, he was showered with attention from medical professionals and assured by school officials that he would be well taken care of, he said.

For nearly a decade Clark enjoyed superb medical care — nurses in his home around the clock, access to pain medicines and prescriptions and a storeroom of supplies.

Now the $5 million insurance policy that once covered Clark's medical care has reached its lifetime maximum and come to an end — and along with it, many of the benefits he once enjoyed. Those benefits may have kept him healthy enough to surpass the life expectancy for most quadriplegics, his mother and primary physician said.

"I was told I'd be taken care of all of my life," Clark, 27, said from his bed in his modest house in south suburban Robbins. "That was one thing that brought me comfort. I knew I'd be OK. Now it seems like I'm being penalized for living too long. That's how I see it."

Clark is covered by Medicaid and has some state support, but he no longer can afford the gold-star coverage he has had for the last decade.

Clark's case touches on a larger conversation the nation is having about capping health care costs and rationing care, the push and pull between everyone wanting a top-of-the-line policy but not wanting to pay sky-high premiums. Insurance experts say lifetime maximums keep costs down for consumers, and there are policies available with no coverage limit, but those come at a price.

Although it wouldn't affect Clark, under the health reform legislation, lifetime limits are banned for health insurance plans. Because the regulation became effective on Sept. 23, 2010, after Clark's policy expired, it would not benefit him. Still the goal was to make sure that seriously ill consumers didn't find themselves running through coverage with no other options.

For Clark and his family, it's hard to see beyond the specifics of their situation.

Clark can no longer afford to have helpers take him to his former school to give pep talks or volunteer as a coach. Although he'd like to enroll in college art classes, he cannot pay for it now. So Clark stays in bed most of the time.

His mother, who quit her job at a nursing home several years ago, gets a salary from a state program to care for her son. Clark's father visits, and his two sisters help out when they can, but his mother is doing the work three nurses used to do.

[Karen]

He probably does need 'round the clock attendants, but without knowing the extent of his paralysis, it is hard to know whether he really needed nurses the whole time. It is sad, you would think someone should have been in charge on managing his care the most cost-effective way possible.

I hope they find some way to get him coverage again.

[cassiesmom]

When I worked at Blue Cross a lot of our members had $1 million lifetime maximums on their policies. I used to say to patients and family members that part of my job as your case manager is to stretch that amount as far as it will possibly go, and at the same time, to make sure you have access to all the care and services you need.

[Freedom]

Paralyzed from the neck down -- yes, I'd think he always needs SOMEONE in the home w/ him. Like Karen said, not clear it had to be nurses.

Most likely, insurance covered having someone with him someone w/ him wherever he goes, whether that was to school for pep talks, or to a hospital for tests / treatment, or vocational training. I think (hard to tell from the short newspaper blurb) this provision is designed to help keep the person in some sort of life. But --he chose how to use it. And didn't he / his family or ANYONE notice when he went through 50%? 80%? This shouldn't be coming as a surprise to him, that he hit the life time max.

[Grace]

The article doesn’t say if he is a spared quad – or if he is ventilator dependent. Both of these can affect the cost of care.

Assuming the worst, that he is on a vent, then he cannot be left alone. If something disconnected, he would die within minutes.

Assuming the best, that he is a spared quad, he would be able to participate in his care, and would not need around-the-clock caregivers.

5 million dollars over 10 years comes out to $500,000 per year – or $1370 per day – averaged out. Now a big chunk was spent in the months right after the accident. Then there is the specialized equipment – wheelchairs, vans, beds. And don’t forget he would need to be turned every 2-3 hours to prevent bedsores.

Here is an article about a young man in Oregon. Different situations, but similar problems.

30 years ago a young man in our town went swimming right before high school graduation. He dove into the water, hit a rock, and was instantly a ventilator dependent quad – at the age of 18. He lived the life for about a year – repeated urinary infections, pneumonia, etc. Then he made the decision to be taken off the vent – and he died. His choice.

It always comes down to the money, doesn’t it. Would it be kinder to do nothing at the time of injury and just let them go . . . . . . and who would want to make that decision?

[Catty1]

Photo Gallery: http://www.latimes.com/health/chi-11...7.photogallery

The 3rd and 4th vertebrae in his neck were broken in 2000. He is not ventilator-dependent; he operates his computer by mouth (in photos).

Shaving, cleaning, feeding, evacuating bowels, turning to prevent bedsores, treating bedsores...just trying to think of all that had to be done for my sister, even though she was not on a ventilator.

It's really tragic that the ban on lifetime coverage caps came into effect after his policy expired. I hope something can be done.

[Grace]

Thank you, Candace.

He's not on a vent - and he is not a spared quad. One can easily see the muscle wasting of his arms and legs. He can do nothing for himself - except breathe and blow for computer use.

If his nose itches, he cannot scratch it; he cannot blow his nose; nor wipe a tear from his eye.

[cassiesmom]

I'm sorry if I started an inappropriate topic. This just helps remind me why part of my job is trying to help people get the most from their insurance benefits that they can, and also to do my best to help locate care and services they need that may not be covered by insurance. When I worked at the Blues there were some retiree policies that had absolutely everything possible covered and yet we had people who maxed those out. One catastrophic illness or injury can use up an entire lifetime maximum really fast. What worries me is that if an employer has the choice of laying off me or someone else - and someone else has a child with cancer (or congenital heart disease or spina bifida or ??) and I am single with no dependents - will they lay off that person so as not to have to keep paying for their ill child's care? There are no easy answers. And again, I am sorry if I opened up an inappropriate topic.

[wombat2u2004]

I'm sorry if I started an inappropriate topic.

You never have Elyse. I find it most interesting to read peoples views on this subject. It's is a real minefield out there for sure.
Having converted many houses to suit the needs of disabled people, I have seen it all. I have consulted with nurses, family members, the disabled and doctors, and I have seen the honest ones, the ones who use and abuse the system, the ones who need and the ones who don't need, and I can tell you that every case is different.

[Grace]

I agree with wom - this is not inappropriate.

I think it shows what can happen with an illness/accident of catastrophic proportions. Too many questions - not enough answers.

[Asiel]

I don't think he was getting too much help. Things that spinal cord injured patients are in need of would take a day to list. My niece works in a hospital with all kinds of paitients that will never move again...she does physiotherapy with all of them. They need to have legs and arms massaged 3xdaily so they muscles don't atrophy or go into spasms. Someone has to feed, wash, etc all these patients. These are only the tip of the iceberg. And to convert a home to get some of these patients back home are exorbitant to say the least.
Given the choice most would prefer a normal life livng in poverty.

[Cataholic]

Cassiesmom- I can totally see where you are coming from. Totally. While it may be true that a spinal cord injury requires a lot of care many can't grasp, the fact is the level of care this man recieved is staggering when one considers the basic level of care many, many, many go without in our country. (And other countries). This man's care may now be on par with other's care. They might not have a spinal cord injury, but there are plenty of other serious injuries out there. I think having 'medical' care to assist with going out in public for speaking engagments is 'gravy' and not a necessity. I think basic medical care should focus on necessities first and foremost.

We need good (as I don't know if excellent is attainable for the masses) quality health care for all people with various degrees of conditions.

[wombat2u2004]

And to convert a home to get some of these patients back home are exorbitant to say the least.

A full home conversion for a quadreplegic costs about the same as the house cost in the first place to build.
I did one for a lady who had not long had her house built for $200,000. Her 4 year old son had an accident, the only part of his body that he could move were his eyes. The conversion to her new home, hoists, special bathroom, spa bath etc etc.....cost $200,000. This type of work is not cheap, there are special building codes to follow.

[Edwina's Secretary]

One catastrophic illness or injury can use up an entire lifetime maximum really fast. What worries me is that if an employer has the choice of laying off me or someone else - and someone else has a child with cancer (or congenital heart disease or spina bifida or ??) and I am single with no dependents - will they lay off that person so as not to have to keep paying for their ill child's care? There are no easy answers.

That situation is specifically addresses in the Americans with Disabilities Act (ADA). Protection under the act is extended to people with disabilities, a history or perceived as and those who are associated with a person with a disability. This is to prohibit employers from doing exactly what you state - making a decision based on the (expensive) disability of a dependent.

As always there are two side. An expensive disability on the part of a dependent can cause a small employer to be unable to qualify for group medical - or at least at an affordable price.

On the other side - if the individual cannot get medical through an employer - no insurance company will sell them a policy so what are they to do?

Do employers still make decisions based on the cost of insuring an employee...well...

[cassiesmom]

(banging head on desk) People with disabilities and chronic health conditions are living longer because of advances in technology. People who might not have survived a serious illness or injury in the past, are now surviving and require ongoing care. I wish insurance was set up to help more of these people. The challenge for me is that programs are out there and helping people find the appropriate ones and qualify for them.