HELP NEEDED...

Hello Everyone,

My mom and I are embarking on a new journey and we are requesting your help.  Our hope is to design a website that will be a resource for people with disabilities and their families.  As many of you know, our family has personal experience with disability.  My father lost his battle with ALS in October of 2013 after years in a power wheelchair as a result of the disease.

While sick, my dad made the journey to upstate New York to attend my Master's graduation.  It was important to him that he be there for me, and he was willing to move heaven and earth to make it happen.  His effort and determination touched my heart and is a constant reminder of how much he loved me and how important my successes were to him.

As any one who travels with disability knows, it is a constant challenge in creative thinking and physical exertion.  On our trip, Mom, Dad, and I discussed how useful it would be to have a web resource with details about hotels and disability access.  Even though most of these hotels meet the specific requirements for handicap accessibility, there are often little surprises here and there that it would be best to prepare for ahead of time.  Mom and I were revisiting this idea and decided to give web design a try.

The greatest challenge when talking about disabilities is that their are countless types of disability and needs to help those people.  With this project we are trying to catch as many specific needs as possible in an organized and controlled environment.  To do this in the best possible way we need some help from our friends...namely you dear reader.

So, what do we need?

1) Feedback on our hotel assessment form.  Please follow this link (https://drive.google.com/open?id=0B0u4tibbMiF2UGJFNE0xTnkyMms&authuser=0), we have done our best to capture all of the needs we could think of but are definitely looking for feedback and input.  We are particularly looking for feedback on vision or hearing impairment needs and anything else you feel we have missed in our form.  Please leave a comment below with your thoughts.

2) Please share this article on your social media sites.  We are looking for a lot of feedback and help.  The more people who hear about this project, the most experiences we can gather, and the better our results.  Please, please, please 

tell your friends and share this post, we want as much involvement as possible.

3) Help assessing!  Once we have finalized our assessment form we will be looking for people to visit hotels (either in your local area or on your travels) to assess their accessibility and return the completed form to us so the data can be entered onto the website.  The more hotels we can assess, the more helpful the site will be to disabled travelers and their families.

4) We need a name! We want a catchy name that will also express our mission of helping people travel more easily and successfully when dealing with disability.  Please leave your suggestions in the comment area.

Thank you all for your help and support with this idea!  I look forward to working on this with you and seeing it develop by the grace of God.

Please remember to share this post and leave your feedback in the comments!

ALS Walk and Roll 2014

As many of you know my father passed away from complications of his ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease) last October.  For the past three years my family has participated in the ALS of Michigan Walk and Roll.  We are participating again this year on September 28^th at Stoney Creek.

ALS of Michigan is a fantastic organization that aims to meet the immediate needs of ALS sufferers.  When my dad was living with ALS they let him borrow a scooter, wheelchair, ramps, arm chair, and shower chair as needed.  They have an extensive lending closet to meet the needs of pALS (people with ALS) in Michigan.  The organization also provides respite care to patients in need, filling a vital need for many ALS families.

ALS of Michigan has been a wonderful organization for my family, particularly with the support groups they sponsor for pALS and their caregivers.  I am asking you to please consider donating to this great cause, every little bit helps.  Please follow this link to donate:https://ssl.charityweb.net/alsofmichigan/walknroll/theresaspranger.htm

Thank you in advance for your support!

Chill Out: A Response to “Taking the Icy Plunge”

It’s not every day I have the opportunity to articulate a cogent argument against my brilliant former professor, so when it comes I just can’t pass it up.  Recently, in “Taking the Icy Plunge (or not)” Sean Philpott-Jones argued against the #ALSIceBucketChallenge.  For those of you unfamiliar with this challenge, it is a campaign to raise money for research and awareness of a devastating disease, Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease).  The idea is: one person posts a video of him/herself having a bucket of ice water poured over their head, they then challenge three friends to pour a bucket of ice water over their heads and/or donate $100 to an ALS charity.  The challenge has gone viral and has likely filled your facebook newsfeed as it has mine.

ALS is a devastating disease that slowly immobilizes its victims striking their muscles in any order: arms, legs, voice, diaphragm, any muscle can be affected.  People afflicted with the disease lose control of their muscles and at its climax are entombed in their own body, unable to move or talk, a condition referred to as “locked in syndrome.”  ALS claimed my dad last October, so my family has a very personal connection with this horrible disease.

In “Taking the Icy Plunge” the author argues that the #ALSIceBucketChallenge has two major flaws:

1.       The challenge does little to raise ALS awareness long term with videos containing little substance.

2.       In a fundraising campaign charitable donation should not play second fiddle while public humiliation takes the first chair.

Ok, so to the first point, certainly the videos aren’t classy, but (this year at least) they seem to be effective.  At this time last year the Ice Bucket Challenge had raised approximately $32,000 for ALS charities, this year $5.5 million has been raised.  Clearly, something is going right for them in 2014.  They are raising awareness of this disease and hopefully sparking an interest in people to search and learn more.  Awareness and education are very different, while the videos are hardly educational, I think the buzz they are generating is positive and could have lasting effects.  Putting more substance into the videos isn’t a bad plan however, and I would encourage anyone accepting a challenge to talk a bit about ALS, why it is important to support charities that help victims of the disease, and post a link to a specific charity with you video.

To the second point, I ask you to look at our society.  We are a culture of sound bites, flashmobs, and thoughts not exceeding 120 characters.  Anything (within the realm of moral of course) that gets people involved and inspired to donate to a good cause is a worthy endeavor.  It is difficult to inspire people to lighten their wallets these days, even for a good cause.  Wise challenge participants have been asking for those challenged to play as well as donate and those not challenged to consider making a donation.

On a personal note, the Ice Bucket Challenge has been a fun diversion for my family this year, as I mentioned above we lost my dad to ALS in October.  For the last 3 years around this time I would call Dad and ask “when are you going to start the walk donation page?”  You see, during Dad’s illness an organization called ALS of Michigan really helped my family.  They have equipment closets filled with tools for ALS patients to borrow and return.  When you have ALS you need a lot of expensive equipment and depending on your disease progression you can go from one piece of equipment to another quite quickly.  For instance, ALS patients can go from cane, to walker, to scooter, to wheelchair within the span of a few months. 

ALS of Michigan lends these tools to pALS (people with ALS) and they exchange or return them as necessary.  The wonderful workers at ALS of Michigan even helped my mom find and figure out a portable shower chair in 2012.  This chair allowed my dad to travel to New York for my Masters program graduation.  You can’t really put a price on that can you?

Each year ALS of Michigan hosts an event called the “Walk & Roll.”  It is their biggest fundraiser of the year and The Joyful Jaywalkers (my dad’s name was Jay…cute huh?) begin fundraising as a team at the beginning of August for the walk on the last Sunday of September.  This year the early days of August ticked by and my fingers ached to dial up Dad and ask “when are you going to start the walk donation page?”  Sadly, he isn’t there to answer and though we are all committed to fundraising this year, no one was very motivated to step into Dad’s place and start up our 2014 team.  The 2013 walk was two weeks before my dad passed away.  It was the last place many of our friends and extended family saw him alive and it will be the last of our “firsts without dad” in this horrible year of adjustment.  Starting the fundraising, whether or not we admitted it to each other or ourselves, was a daunting and emotional task.  Denial was the way we all chose to handle these emotions, until about 2 weeks ago.

This was when our friend Vince was challenged to dump ice water on himself and dedicated his video to my father’s memory, and it went from there, friends challenging friends: everyone talking about my dad, how great he was, how much they miss him, and asking for donations to fight ALS.  It may sound silly, but watching friends and family take an ice shower in honor of Dad really warmed my heart.  It was also the perfect catalyst for our campaign, my siblings all accepted when my brother was challenged, and decided to dedicate our video to all of the wonderful people we lost this year to ALS and those still fighting.  When your family is personally impacted you meet and grow to love many others with the disease, so the list was long.  My sister set up our team fundraising page and we told everyone about the walk in our video.

The challenge is certainly silly, but what are we Americans if not silly right?  And is there anything wrong with being silly for a good cause?

My hope is that this challenge will inspire people to learn more about ALS and support great organizations that help patients and families.  ALS of Michigan is one of those organizations, if you are inspired please click the link below and support the Joyful Jaywalkers in 2014.

https://ssl.charityweb.net/alsofmichigan/walknroll/theresaspranger.htm

Big Bad Ebola

Please click the link below to read my latest article on bringing Ebola to the United States and the use of the experimental Ebola antiserum.  This article has been written for The Bioethics Program.

http://thebioethicsprogram.wordpress.com/2014/08/12/big-bad-ebola/

Continuity of Care or a Culture of Kickbacks?

Recently, I did something I almost never do…I went to the doctor for a physical.  Yes, yes, I work in the medical world and know how important it is to have regular checkups, but unless/until it becomes necessary I steer clear of the doctor’s office.  Unfortunately, this past April going to the doctor became necessary…

You see, about a year ago I had to switch from my cushy PPO plan to a less-than-satisfying HMO plan.  With this switch I now have to play the referral game.  This wouldn’t be an issue except that my glasses were disintegrating before my eyes.  Therefore, it was imperative that I brave the primary care physician’s (PCP) office for an Ophthalmology referral.

To do this I needed to find a new PCP, so I picked Dr. Mary Murphy on a recommendation.  She saw me as a new patient and I let her know about the referral I was seeking, she said that since her computers were currently down I should call the office in a few days for the referral, but it shouldn’t be a problem. 

When I called the office a few days later, I was told that I would be unable to go to my Beaumont doctor because of the “continuity of care” policy at St. John Health System.  The conversation went something like this:

Referral specialist (RS) – “You must see a St. John’s affiliated physician for continuity of care.  For instance if you were to be admitted to the hospital by this doctor, you would not be admitted to a St. John’s facility and the medical records would not be in our computer system.”

Me – “If I were to be admitted to the hospital directly from my Ophthalmology follow up visit???  And just how likely is that, do you think?  Besides, I could have the records sent to your office.  I understand that you are concerned about your continuity of care, but how about mine?  This physician has been treating my vision issues for the past 20 years.  I have a complicated history with my eyes and am not willing to switch specialists.  Can Dr. Murphy make an exception in this case for my continuity of care?”

RS – “Ma’am this is a policy of your Blue Care Network (BCN) insurance.”

Me – “I don’t believe it is, I looked up my Ophthalmologist’s office and it is within the BCN network.”

RS – “Ma’am I suggest you call your insurance company.”

Needless to say I hung up and promptly called BCN.  They informed me their policy states that the physician chooses where the patient will be referred and that BCN has no involvement in this choice.  So, I called Dr. Murphy’s office back and clarified the BCN policy for them, since they seemed confused, the response I got was unpleasant at best.

RS – “Ma’am I never said that it was BCN’s policy.”

Me – “Yes actually you did, you just told me to call them.”

RS – “Dr. Murphy will not give you that referral, we suggest you find another PCP.”

I took their recommendation.  I usually try not to use this blog as a venting platform, but feel this policy claiming “continuity of care” as a reason to trap patients in a certain health system is patently bad for the health of the patient and something should be said.

I think you should seek care from the best available specialist for your disease or condition.  I don’t live a life tied to one health system, in my opinion it isn’t wise.  Even though a health system may be “best in the area” at one thing it won’t be best for everything.  And if you are sick, don’t you want the best?

When Dad was sick we went to all three of the area ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease) specialists, they were in three separate health systems and we were able to maintain “continuity of care” for his PCP just fine.  In fact, going to the different specialists allowed us to have a more complete view of Dad’s disease and explore all treatment options.

So, is the quest of St. John’s Health System really for “continuity of care” or is it ultimately a treasure hunt?  For each patient kept in the system St. John’s makes more money, so it seems to me they are more concerned with the good of their pocket book than the good of their patients.

I single out St John and Dr. Murphy because I had this experience with them, but I don’t think this is an isolated problem.  Savvy patients beware, lest you become trapped in a mediocre health care system when you have a serious illness.

Home at Last: Justina Pelletier Gets her Happy Ending

On Tuesday afternoon Lou Pelletier’s cell phone rang, it was his wife’s name on the caller ID, when he answered the voice he heard was his baby girl, Justina.  “Daddy, Daddy, I am coming home.”  The 16 month battle between the Pelletier family and the state of Massachusetts has finally come to an end.  On Wednesday, June 18^th Justina was transferred back to her family home in Connecticut and the case between her and the Massachusetts Department of Children and Families (MaDCF) was closed.

On May 30^th the Pelletier family and MaDCF filed motions to have Justina reunited with her family stating that all four requirements of the reunification plan had been met.  Since May 30^th the motion has been on the desk and at the mercy of Judge Johnston.  He approved the plan on June 17^th and Linda Pelletier, Justina’s mother, was able to take her home the next morning.

I believe this is in no small part due to the public outcry, phone calls to the Massachusetts powers-that-be, and extensive media coverage of this case.  Thank you to all of my readers who joined the fight for this little girl.

Her journey, in a sense, is just beginning.  She is confined to a wheelchair, it is unclear if she received adequate schooling during her time in the custody of MaDCF, and her forced separation from family will certainly leave scars.  Her family plans to find her appropriate physical therapy, assess her schooling needs, and start the journey to emotional healing.  They are under no delusion that their world will return to the normal they used to know, but are determined to help Justina heal and create a new normal for the family.

Lou Pelletier is overjoyed to have his daughter home and said his main focus at this time is her health and safety.  However, he plans, with the help of Liberty Counsel, to pursue legal action against MaDCF in the future. His goal is to ensure this never happens to another family and create a “Justina Law” to protect the families of children with rare diseases against flagrant charges of medical child abuse and secure parental rights in medical dispute cases.  A noble goal and I wish him well on his journey.

Thank you again to all of my devoted readers for helping get the word out about this case and indulging my obsession.  For the foreseeable future I think I am done writing about the Pelletier family.  I will however be watching as Liberty Counsel and Lou Pelletier pursue legal action against MaDCF.  Hopefully the next time the name Justina Pelletier appears on this blog it will be under the headline “Justina’s Law Takes Effect.”

A Less-Than-Sweet 16: The Justina Pelletier Saga Continues

Justina Pelletier turned 16 over Memorial Day weekend.  She was only 14 when the Massachusetts Department of Children and Families (MA DCF) took custody of her.  She has been hospitalized or institutionalized ever since.  Many of you will be aware that this is a story I have been following closely. If you are new to this tale and need further background on this family please see When Being Wrong is Unacceptable and When Doctors Disagree.

Earlier this month Justina Pelletier was transferred to a facility in Connecticut.  Though her parents still feel she should be home, they have said that this new facility seems to be taking better care of their daughter.  They are allowed more frequent visitation with her and are hopeful that she will soon be home.  Some friends were even allowed to visit and celebrate with her on her birthday. 

Even though these are positive developments, the case as a whole is still very concerning.

In March of this year "permanent" custody of Justina Pelletier was awarded to the state of Massachusetts.  Prior to this, Justina’s care was ordered back to her original physicians at Tufts.  Since this case is a diagnostic dispute between the physicians at Boston Children's Hospital (BCH) and Tufts, wouldn’t this transfer signify that the Tufts diagnosis of Mitochondrial Disorder was being upheld?  And, since the parents had been upheld on which doctors should treat their daughter, why did custody go to the state?  The logic in these decisions is not clear to me.

 Shortly after the custody ruling in March the judge's decision was leaked, trying to gain some additional perspective on the case I of course read it.  The full text can be found here.  My interpretation is as follows:

He made three main points:

1.       Disappointment that Connecticut Department of Children and Families (CT DCF) was unwilling to accept a transfer.

2.       Justina’s diagnosis

3.       Parental bad behavior

Let’s break down what Judge Johnston had to say about each of these issues.

First, the better part of his decision talked about his disappointment in CT DCF for refusing to accept a transfer of Justina.  He noted in his decision that CT DCF had investigated the Pelletiers and found that the home was an unsuitable environment for Justina (the Pelletier family claims the opposite).  Personally, I found the incessant mention of the CT DCF denial by Johnston to be (for lack of a better word) whiny to the point of ridiculousness and redundancy.  To be frank, I expect legal documents to be more professional and less petulant. 

However, all that being said, I don’t understand why Connecticut is refusing the transfer.  I assume it is to avoid media attention and responsibility.  If they were to accept her, she would be closer to home and if (as the Pelletier family states) CT DCF in fact found no problem with the home, why not accept the transfer and release her to the custody of her parents?

Regarding the diagnosis, Judge Johnston states that there is a large amount of psychological and medical evidence to prove that Justina suffers from Somatoform disorder.  However, as mentioned above, his order to transfer her care back to her original physicians at Tufts is contradictory to this statement.  The Tufts physicians diagnosed Justina with Mitochondrial Disorder and will certainly treat her in accordance with their diagnosis.

The last belabored point in the decision, was a discussion of the parents’ poor behavior.  Interestingly, everything noted as poor behavior and the reasoning for removal of custody happened after Justina was initially placed in state custody.  The document states that the Pelletiers were:

-          Verbally abusive to BCH staff

-          Approaching other families at BCH and telling them that the hospital was kidnapping children

-          Threatening institutions that were planning to accept Justina as a patient

-          Contacting the media

-          Changing their minds about accepting a transfer to CT DCF upon the advice of new legal counsel.

To me, much of this seems like behavior that is par for the course when someone has been unnecessarily stripped of their parental rights and are grasping at straws to have their child returned.  I don’t deny that the behavior is rude, but being rude is not a reason to lose your parental rights.

Consider these parents: their daughter has been taken by the state of Massachusetts, they are extraordinarily limited in when they visit her and what can be discussed, they see her health declining and can do absolutely nothing to help her.  How calm and pleasant would you be if it were your child?