Guest Post From 'A Frustrated Grandmother"

This is our Oliver. Even before he was born, we were led to believe that Oliver wouldn’t do much. Thanks to all the medical technology available nowadays, we knew he had a good chance of having Down syndrome and we knew for sure he had a heart malformation. We were given a very gloomy prognosis. Weeks at the NICU, potential heart/respiratory problems , feeding problems, weight gain problem were all predicted. Well, he beat all the odds: 3 days at the NICU, no heart related problems, excellent nursing, good weight gain, good muscle tone, responding to all kinds of social interactions, good development, happy, never ceasing to amaze us, loved to bits by all of us.

He never needed an extra trip to the doctor’s office, just the well child visits covered by his parents’ health plan. He was a good patient... until Saturday January 23rd 2010.

You see, the only requirement Oliver had was to get a series of 4 shots during the winter months to boost his immune system and avoid getting sick from RSV, a common virus, which can cause a wreck in kids awaiting heart surgery. He had his November shot and his December shot, and stayed healthy.

Then, the nightmare began.

The company that Oliver’s dad works for decided to change insurance companies. The logical thing would be that all his medical needs would roll over, but his parents discovered that the pharmaceutical company would not deliver the shot unless they re-applied and got re-approved.

There was a delay transitioning between the two insurance companies, and a further delay with the pharmaceutical company apparently.

Before the process was completed Oliver had caught a common cold. His parents dealt with the cold the way the doctors told them to. They waited for the shot the way their insurance company and the pharmaceutical company told them to. They did everything they were told to do. And Oliver ended up in the hospital with RSV and pneumonia.

Why the delay?

I am sure all of those people could find Oliver’s information just by striking a couple of computer keys. It’s hard to believe they didn’t see that Oliver needed to be treated right away. Shouldn’t patients like Oliver have a red flag and get channeled a different way than people who aren’t in as much danger to speed up the process? Shouldn’t they take care of all the procedures instead of delaying it by making parents call doctors and rewrite papers?

All the information is available. Channel these urgent cases to employees trained to deal with the procedures right away, who can tell parents not to worry, that they are going to take care of everything, that they are going to call the pharmaceutical company so they deliver the medication right away, and that parents must call back if they don’t receive it by the next day.

You think it’s crazy? Why, one can get plane tickets instantly, or get approved for a credit card instantly, or have his/her information available on the net to anyone that wants it. These companies are being paid billions and billions of dollars, but the people that are paying them are being rationed and delayed when they need help.

Are you thinking that their employees are dealing with hundreds of requests and it takes time? Oh, but wait! What did Oliver’s parents received on the mail while Oliver was still in the hospital? A notification from their insurance company warning them that they “don’t guarantee payment for services provided while in the hospital,” that the company would have to determine the “appropriateness of the admission, length of stay and level of care and would have to review it against established criteria."

The timing was cruel. It added so much stress to an already horrible situation. Were his parents supposed to take him off the ventilator and take him home?

Didn’t Oliver deserve to be treated this diligently when his mom called requesting the approval of the shot?

I don’t even know whether my complaints will fall into the right hands. I am pretty sure the people who hold the top positions in these companies have learned to isolate themselves from us, the people that need their services.

We are blessed to be in a city with good medical care and to have Oliver home with us and healthy again, but still in so many ways, the system does not work:

*Tiny doses of lifesaving medications for babies should not cost over $1000.

*Somebody else besides the company making the $$ needs to make the decisions on what treatment is needed and how fast this treatment should happen.

*The process of changing insurance companies shouldn’t delay care.

*Companies we rely on for important medications need to be timely and communicate.

We need a system that hears the people and tells us: don’t worry we’ll take care of you.

~Ana

(Picture of a brown haired baby boy wearing a t-shirt that says Mommy and Daddy Love (heart) Me.)

Please Pray for this Baby

This poor little guy is having a rough week.

He was born in August and his mom used to babysit for my kids. He has Down syndrome and a heart defect for which surgery is scheduled.

But, that said, this little guy has done better than expected from the get-go. He was discharged from the hospital earlier than predicted as a newborn, nursed better than they said he ever would, and gained weight better than anyone thought possible, and in spite of our back-and-forth weather he hasn't even been sick...

Until now.

Through the end of December he received a montly injection of medication to prevent RSV (a potent, highly contagious virus responsible for the common cold and more.) A nurse went to his house to administer it to keep him out of the germy doctor's office.

First of the year his dad's company changed insurance carriers and the new company dragged their heels about whether or not the medication would be approved (the med costs $1000.)

Two weeks after the med was due the company finally approved the drug (though not the nurse to administer it.) The drug has been ordered, but takes a few weeks to come in.... so no January dose will be happening.

Saturday this sweet little trooper was admitted to the ICU in our local hospital... (his grandmother sent me this picture and said I could post it.)

And what virus has he been diagnosed with??

Guess.

Please pray for him.

(And forgive me, but $1000 doesn't seem like that much at this point....)

(Photo of a sweet baby boy with medical tubes in his mouth.)

Medical Profession, Heal Thyself. Now!

When my oldest daughter was 11 days old she got sick. She was logey, wasn't feeding, was sleeping (which trust me, was wrong.) She didn't have a fever, but she just was not right. I called the doctor's office and the person on the phone told me she understood my anxiety being a new mother and all, but I should just hold tight and try to give her more fluids, especially since our own doctor was off that day.

A couple hours later I called them back and that phone lady heaved a heavy sigh and said, "Okay, you can bring her in if you can't handle things."

I packed her and all the stuff you have to pack to mobilize an infant. All the while telling myself that I was NOT being stupid and I was doing the right thing, and even if I WAS wrong it was better safe than sorry, and d---mmit I AM handling things!!!! This IS handling things....

We were with the pediatrician for about 5 minutes when he walked us over to the emergency department of the attached hospital for a spinal tap. She was admitted for meningitis...

And when my youngest daughter was having seizures in the arms of a neonatologist (who is also a dear friend) that same office staff reluctantly agreed to see her only after I insisted... She was tested.

Was she seizing? Of course she was...

Our doctor changed office shortly after this, which is the only reason we are still with her.

All of that is ancient history of course.

Or so you'd think.

Last week my friend was talking with a mom she knows who is in her 40s. This gal took her 10 year old grandson to a local clinic. This mom/grandmom is petite, looks really young (bless her) and is from a lower SES... She was dismissed out of hand by the physician until she finally said something they understood as meaning 'this wasn't her first time around the block.' Only after that did they really look at the boy. And yes, they found some real problems that needed real treatment.

The doctor then apologized and said, "We just thought you were another teen mom...."

Now I would have pointed out that it was impossible for a 16 year old mom to have a 10 year old child, but this gal is smarter than me.

She said, "What if I was? What about my age would mean that my sick kid wasn't sick???." She told them outright that they needed to treat people better.

And yesterday... yesterday takes the cake.

My next door neighbor's daughter (who used to babysit my kids!) was over and her 4 month old son (who also has Down syndrome, interestingly) was sick. The mom called the doctor to say he was having trouble breathing. The on-call told this first-time mom that he was fine and they didn't want to see him unless he had a fever.

They dealt with that for a little while and then asked if I would come look at him. (I'm a nurse though I work with adults--old adults!) He didn't have a temp, and my stethescope was bigger than his entire body, but he was really struggling to breathe even when asleep... I said I thought I would want him seen if he were mine, and suggested calling the doctor's office again. I said this time tell them you want him seen--don't ask, just tell.

They were sent to an ambulatory after hours center--who called an ambulance. Today he is in intensive care on a ventilator.

I know everyone needs healthcare and no office can see everyone every day. Some kind of gatekeeping is probably necessary, but must it consist of profiling and preclude listening??

There just must be a better way.

Ideas??

Picture from here.

Lots of Legislation: Walk through the Web With Me

Now the web on this tour is not like the lovely web in this picture... naturally not.

Our web is more like the one that I walked through on my porch this morning--all globbed up and folded on itself and stuck to me...

Now doesn't that sound like fun?

Seriously though, there is a lot of legislation and government activity going on right now that affects many aspects of living with disability. We can have an impact for ourselves or for our kids if we take action now.

First up, of course, is healthcare:

Healthcare coverage for people with disabilities is a very tricky and delicate proposal. And it not only affects people's health... it also impacts potential for employment and often even where a person with a disability can live.

Healthcare, is of course, necessary for people with disabilities and it can also be expensive. Therefore employers are often hesitant to hire people whose high health needs will make insurance more expensive for their company...

Employeers often need not worry though... even if they did hire someone with a disability and offer them insurance the likeliehood is that the person with a disability would be turned down for coverage because their disability is "pre-existing condition."

So then what does a person who needs care do? They sign on for Medicaid.

The care can be ok depending on your state, your town, your caregivers and all, but now you have to stay eligible...

To be eligible for Medicare and Medicaid you can't have more than $2000 in assets to your name.

So you can't work. At least not much...

This is why so many people with disabilities want a public option for health insurance--something affordable that they can buy on their own. So they can separate their healthcare from their employer AND make a living...

Action: Call (800)828-0498 and ask to be put through to your Senator's office. Let them know that these issues matter to someone you love.

More about healthcare:

Under the current payment systems for Medicaid and Medicare funding is guaranteed for people who live in nursing homes and other institutions and not guaranteed except under a variance for people to live in their own homes in the community.

Now living in your own home is more desireable, AND it has also been proven to be more cost-effective... but that isn't where the money goes. This 'institutional bias' forces many people who could live and work in the community to live in care systems they neither need or want...

What is being proposed under the Community Choice First Act is that the "money will follow the person" rather than the current system of the money going to organizations to divvy up the way they choose. This will allow folks who need or want more comprehensive care in a small or large facility to have the funds for them spent that way. And for the folks who want to stay home, the money for their care can be spent on community-based services.

Action: Check out this website and this website. Then go to this page click on the healthcare reform issue and fill out the capwiz. It will take about 5 minutes...

Now, about employment:

As you can see in this article, President Obama has declared that October is Disability Employment Awareness Month.

Creating employment opportunities for the 65-75% of people with disabilities who are unemployed in this country, most of whom live in poverty (see above) will improve their lives...

It will also improve the economy. There are millions of folks who are not participating in the economy either as worker or as customers because of the unnecessary poverty that is foist upon them.

This is NOT the future I want for my daughter.

Action: Pay attention locally for forums, discussions and events. Participate. Get to know the folks there. Pay attention to barriers and help build bridges in your workplace and community.

And the good news:

Not only can you have an impact on a complex and sticky bunch of issues, but it's actually good for you.

Yep, it's true. Read this article.

Now, aren't you glad you stopped by?

Picture from here.

Inspiration and a Call to Action

My daughter introduced me to this song from Ragtime last year. My son heard the following quote in History this year and thought I should share it with you:

"I have pleaded your case not in the tones of a feeble mendicant asking for alms but in the thundering voice of the captain of a mighty host, demanding the rights to which free men are entitled." John Llewellyn Lewis

Now, call your representatives (in fact, call your senators too!) and tell them that you can't reform healthcare without reforming longterm care.

Tell them that the bias toward funding institutions INSTEAD of community-based care options is more expensive, prevents the will of the customer from weeding out non-competitive, outdated and undesireable services, keeps the disability community segregated and contributes to the high unemployment rate of people with disabilities since living in institutions eliminates many opportunities. And at times this bias keeps people with disabilities in situations where abuse is rampant. (Read this article to learn more.)

Today was a call-in day for the House of Representatives, for some in the west there is still time to call--for those in the east e-mail, visit or call tomorrow--a lot of calls today would have been great, but voices raised at any time have more impact than silence on important issues.

Mission (Im)Possible: A Challenge to Health Researchers

I am part of an advisory committee for the Institute for Innovative Transitions at the Strong Center for Developmental Disabilities. We had a presentation yesterday from The NYS Institute for Health Transition Training about the transition from pediatric to adult healthcare.

It was a really interesting meeting and they have done a lot of work. Probably the best part was this website (go check it out, I will wait!) where they take a Learn-See-Do approach for teaching medical personnel, parents and young adults with DD how to transition to adult care (the site is ADA accessible and Spanish translated too!). The site also has an amazing feature where a young adult can have a private page that he/she and their circle of support can maintain medical planning info. It’s not only available for working their plan, but could be accessed for hospital visits, etc. They are hoping other folks around the country will replicate this in their states as well.

There are also diagnostic grids and resources available on the site for physicians and they are implementing other physician-to-physician activities to inform and support the medical community as well. For example they have technology that is trolling the internet to find new articles on developmental disabilities which they then evaluate (and rank) and make available for physicians in the different topic areas. This technology originally had some sort of Defense Department application and now it is being put to work (repurposed as my green friends like to say!) to find health information for people with disabilities.

The big elephant in the room, of course was that most adult-care physicians do not accept Medicaid patients. This was an acknowledged issue, but they did not accept this as a barrier to their work. They modeled their approach after diabetes care—a chronic-care model that is accepted by healthcare and insurance providers alike. It turns out that some time ago researchers in Washington State did research that showed that if certain diabetes protocol were followed patients had better outcomes AND it saved the insurance companies money. Because of this research the best practices of diabetes care (including something called “academic detailing” where a subspecialist and a general physician can meet to discuss care needs for specific patients!) is billable with insurance companies.

Your mission, should you choose to accept it (and PLEASE do accept it!!!):

Do the same type of research that made best practices billable for diabetics, about Developmental Disability issues. If the value of excellent health care for people with disabilities—for themselves and for payors—could be demonstrated healthcare could become a reality and improve the lives of people around the country.

This tape will self destruct in 30 seconds....

Just Kidding!

Listen to the Canary

A few years back our school district went through some administrative changes. Within weeks of the change the parents of children with disabilities were alarmed when they were notified that the district had changed the Education Plans of all of the children who receive summer services. These changes were made without holding a single IEP meeting— meetings that are required by federal law.

As the next few years unfolded many, many more problems came to light about the way our district was being administered. The Special Ed parents knew of the problems first. We often joked that our population was like the proverbial canary in the mine shaft.

Before the invention of sophisticated chemical testing equipment coal miners would bring a canary with them when they descended into deep mines. The canary would indicate the presence of poisonous fumes before the miners’ lives were in danger. As long as the canary sang the miners knew they would be all right.

In November I heard Michael Collins from the National Organization on Disability present as part of a panel at the Association of University Centers on Disability annual meeting. He was speaking about his organization’s priority of Emergency Preparedness. Collins stated, “People with disabilities are like the canary in the mineshaft—AND if they can keep us safe, or get us out, they can do it for anybody.”

This stands to reason. If our environments are accessible for people with disabilities they are accessible for all. While steps challenge many, a ramp works for everyone. How many of us have benefited from elevators and automatic doors? And who hasn’t followed the closed captioning when trying to watch the news in a crowded airport or catch a game in a noisy bar? If it works for the people with disabilities everyone succeeds.

It also seems to follow that it if we can meet the challenge of educating the kids with learning needs, we can educate anyone. And if we can address the healthcare needs of folks with significant disabilities we are able to provide care for anyone.

The same can be said for housing, transportation, civil rights, employment and more. If our systems can succeed with people with disabilities they can accommodate anyone. The Universal Design principles that architects use to create accessible spaces can be applied far beyond the accessibility of physical environments.

In my experience this even holds true for cultural issues. For example, if people with disabilities (including cognitive disabilities) are well integrated into a community, people with other differences are usually welcomed as well.

Conversely, when our systems have problems the ill effects are first noticeable to people with disabilities as well. Like the canary in the mineshaft the experiences of people with disabilities are often the first indicators of both society’s successes and its failures.

(Thanks to my friend Kathy who made me the miniature canary in the cage in answer to my picture dilemma!)