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*** GA Medicaid drops 2000 kids from Katie Beckett program (+30% reduction) ***

See http://www.cbs46.com/Global/story.asp?S=5473158 for the news story!
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Peyton bouncing on his Daddy's knee (when 3-4 yrs old)

 

 Open letter to anyone who cares about children:

To:  Anyone who truly believes ICU level, very medically fragile children have the right to live at home and should receive the full medical care and civil rights they are granted by Federal Medicaid law and as upheld by the US Supreme Court against the State of GA in the “Olmstead Decision”.

The Issue: The new State of GA DCH Commissioner Meadows illegally (the time limit allowed by the authorizing law was greatly exceeded) and arbitrary reversed the legal decision of the GA Office of State Administrative Hearings’ Judge Gatto when he fully upheld Peyton Mink’s current levels of home nursing care as appropriate and medically necessary after a full hearing and presentation of facts by both parties.  This outrageous reversal of an impartial judge’s hearing decision by an appointed department commissioner would have placed our young child at significant risk of death or severe morbidity if the state’s care level reductions were carried out.  If that happened, the alternative was forced institutionalization in a hospital, removing him from our home against his wishes and that of his family.  We appealed this completely improper overturning of the judges’ decision to the GA State Superior Court in December 2005 and eventually won a final decision on the matter over a year later with the new judge fully restoring Judge Gatto's decision.  The state basically lost on all points they argued because their position was so unrealistic and not grounded in the reality of the true nature of the situation.  The bottom line is the state very often tries to bully valid and deserving care away from those who truely need it and those that are not willing or able to somehow stand up to them will always lose unless the citizens of this state and country stand up and cry FOUL !! and then do something about it.  Until then the children of this state will be the ulimate losers and that is a very sad and horrible outcome in my book.

Federal Civil Rights Complaint under investigation:  Peyton’s problems can be life threatening at any moment and the State’s disregard of his rights and critically required medical care levels is a certain violation of the Olmstead decision by the US Supreme court.  Since the state and Governor Perdue have refused to DO THE RIGHT THING even after being asked personally on two occasions by US Senator Johnny Isakson to do so, we were forced to file an official complaint with the US Dept. of Health & Human Services’ Office for Civil Rights, Reference #05-3854.  The case is under active investigation, but that agency apparently is very, very slow to act.  A self correction at the state level is likely needed before the Feds eventually act, otherwise the modest families of these special children will be needlessly bankrupted defending their children’s civil rights in court, rights that should never have been assaulted in the first place.  Based on past history and what they have done to others, its pretty clear that GA Medicaid’s true goal is to wash recipients out from their system, regardless of their needs or as to what the right thing to do is.  This strategy of continued misapplication of rules and ignoring of laws has been pursued by them periodically many times in Peyton’s case and got significantly worse under the leadership and direction of Governor Perdue.  Several years later (as of late December 2007) the feds have still done absolutely nothing nor have they contacted us in any way.  Are our laws not worth the paper they are written on?  I guess if you don't have powerful lobby behind you, the feds only bother to enforce the ones they choose as directed the chief executive, what a sad America we have now become....

Economics of the care levels:  Several top Scottish Rite and Wellstar pediatric physicians have made it clearly known the minimum required care level to sustain our son in the home setting is 16 hours per day of private duty home nursing.  Unfair and illegal forced institutionalization is the only option left us if the state were to be successful in their desired actions to arbitrarily reduce the provided care level by 25% for no medical reason whatsoever.  The current ongoing state provided nursing care in our home 16 hours per day costs at most $900./day and is usually much less, yet the hospital inpatient level of care for our son is currently approved by Medicaid for $3,757. per day, proof of which we have in writing from the state.  How can the state justify placing children at home in such danger by withholding needed home care levels when if the child was institutionalized they would have to pay so very much more than they already do?

Changes needed, new laws:  Life and death affecting decisions should not be allowed to be made at the state commissioner level in our state government.  Therefore the DCH commissioner should have their power to overturn administrative law judges’ decisions removed completely or severely curtailed.  There should also be significant consequences added to the law to hold accountable any commissioner who blatantly disregard existing GA law in these matters.  There should also be more control and oversight of programs, especially those that deal with life and death care.  The controls in place now are severely inadequate to ensure proper care is provided or that Federal Medicaid law and Disability Civil Rights are not disregarded by state or federal agencies.

Thank you in advance for any and all assistance or influence for change that you may able to provide in these important matters.

Mark Mink

Father of Peyton Matthew Mink

 

Peyton in Scottish Rite ICU room, March 2005
Peyton watching TV at home, May 2005

The below is earlier content of this web page created just prior to Peyton's administrative law hearing in the fall of 2005, a decision which was won on serveral counts by Peyton. The new DCH commissioner Rhonda Meadows later illegally and capricously overturned the administrative law judge’s decision (the time limit allowed for commissioners to do so by GA law was greatly exceeded).  The case was then appealed to State Superior Court in November 2005 and eventually won again by Peyton over a year later via a full reinstatement of the original Gatto decison.  The state then again tried to get the State Court of Appeals to hear it.  This court rightly refused to do so, a decison which effectively ended the matter in Peyton's favor.  With all this court action, I'm sure you can just imagine how much in legal fees we had to shell out to just to defend our son's lawful rights against these government bullies who refused to even follow standing state or federal law.  Bullies who failed to apply at all the respected attending physcian's opinion on the proper care level for Peyton.  The state still even thinks they know what's best for our son and none of them have even ever met or examined him.  What a bad nightmare this whole thing has been for our whole family....  The bottom line is that any extra time, energy or money that our family could have rightfully used to help benefit our son and his many severe conditions was effectively stolen from him by our unjust state who left us no choice but to fight them in court over their refusual to simply follow existing state and federal Medicaid law.  I will never forgive them for that and I hope you won't either....



***Important News: Peyton’s Medicaid fight reaching critical stage as 8/12/05 court hearing nears*** See detailed TV interview video from 8-10-05 at CBS46.com for more information. We are encouraging everyone to call or fax the Governor's office and tell him you want the state to just 'DO THE RIGHT THING' for Peyton Mink. If you have problems finding the video at CBS46.com or the governor's office numbers, please email Mark using the link at the bottom and we will email you either or both items. Thank you all so much for your thoughts and prayers during this very trying time. -The Minks


1. Welcome statement:
Welcome to the home page of the Mink family! Thank your for taking time to visit with us! You will find that most of our site details the critical issues revolving around the neediest member of our family, our 8 year old son Peyton. His story and our family’s continuing struggles to keep him alive as well as provide a reasonable existence for him is described in detail. Feel free to contact us, especially with words of encouragement or suggestions that may help us in Peyton’s “Medicaid Fight”. Lastly, if you would like to see some of the lighter side of things about our whole family; Mark, Kelly and Billy and Peyton, please see our pages at http://home.comcast.net/~markmink/mink-index.html . Thank you for visiting!



2. The story of Peyton Mink- Short version:
Peyton is a darling little boy trapped in a body he can’t control. While his mom was pregnant with him, Peyton suffered a brain injury due to an unexplainable period where there was a lack of oxygen delivered to his brain. This occurred six weeks from the normal due date and required an emergency C-section birth and immediate critical care in a Neonatal ICU. After many, many tests the exact cause of the lack of oxygen was never able to be determined.


Most of the resulting injury was to the Thalmus portion of the brain, causing significant damage. This is the portion of the brain that controls most body functions and is basically the interface between the brain and the body. The cognitive (thinking) portion of Peyton’s brain was not affected. Because of the Thalmus damage, Peyton is an extremely medically complex and fragile child and could die at any time without 24/7/365 Hospital Intensive Care Unit level care. At the same time, he is fully aware of himself and his surroundings and actively interacts with his family, nurses, teachers and therapists.


A really bad side effect to Peyton’s brain injury is the severe scoliosis that he has developed over time as he has grown older and bigger. We were hoping with all the other problems that Peyton has had, that this one would not progress to the point that it has now. His curve was measured at 105 degrees in January of 2005. As we have known all along, there was no way to prevent it and the only treatment is a major operation that entails placement of several rods and hooks placed in and around his spine. There is a good chance that he would not survive the operation. The doctors tell us that it has got to the point where we either do the operation now or they won’t be able to do it at all, ever. If we don’t do it, then he runs the chance of the curve continuing to progress, causing premature death due to compression of the lungs and other vital organs. We don’t know what to do at this point regarding this issue and are awaiting some kind of a sign to lead us to make the right decision.


Please see Peyton’s page at http://home.comcast.net/~markmink/mink-index.html for more detail on his brain injury and to see a bunch of pictures of him through the years.



3. Critical care levels of home nursing care provided by Medicaid:
Almost all medical health insurance plans exclude the kind of skilled home nursing support required for somebody like Peyton. Therefore Peyton’s nursing hours have been paid for mostly by Medicaid under the Katie Beckett waiver program. Most all of Peyton’s other medical costs (durable medical equipment, medicines, doctor visits, therapies, etc.) are paid for by our family’s private health insurance.



4. Doctor ordered care levels:
16 hours per day of provided skilled home nursing care is the absolute minimum level appropriate as determined by Peyton’s longtime doctor, Dr. Peter Scott, a very respected pediatric pulmonology doctor who practices out of Children’s Healthcare of Atlanta’s Scottish Rite Hospital. Doctor Scott has written to GA Medicaid on multiple occasions indicating “Peyton requires 24 hours a day of skilled observation and nursing care to prevent morbidity or death”. His position, based on periodic direct personal evaluations of Peyton’s very fragile condition, is that 16 hours per day of skilled home nursing care supplemented with 8 hours per day of lesser family provided care is the minimum that would be acceptable given the risk levels of the patient. Dr. Scott has said that anything less puts Peyton at significant risk for institutionalization in a hospital Intensive Care Unit.


It should be noted that whenever Peyton goes to the hospital for whatever reason other than a quick clinic checkup, he is immediately admitted to the ICU and has never been assigned a regular hospital bed or room in his whole life. This is largely because he aspirates his own secretions as well is ventilator dependent, therefore he requires someone right there with him 24/7/365 or else he could suffocate from any number of ways. Peyton has coded and almost died on at least 4 different occasions, each time being brought back by skilled caregivers. The latest time was just this year on March 3rd ,2005 where his heart actually stopped and he probably came as close to death as he ever has been. Additional detail regarding that near death episode is provided under section number 10 below.



5. Past and Present Medicaid battles:
Federal Medicaid law and programs are administered by each state through a Federal/State shared participation arrangement. If a state offers Medicaid programs, they are required to meet the Federal laws and rules of the program in order to obtain Federal funding. Even though Peyton’s condition has somewhat worsened over the years, the powers that be at the State of Georgia have inappropriately and periodically tried to either completely eliminate or significantly reduce Peyton’s home nursing care levels. These actions were in direct conflict with Federal Medicaid guidelines and this behavior has continued to this day.


Each time the state pursued these totally inappropriate actions, the Mink family sought out our political representatives to ask for their help to pressure the state to behave by properly providing the care levels mandated by the Federal Medicaid rules and continue the critically needed care. We asked our political representatives to stress to the state to just “Do the right thing”. We were always successful with the political solution to the state’s potentially life threatening misbehavior until late summer of 2004. Our current US Senator, the Honorable Johnny Isakson has indicated he personally called the Governor of the State of Georgia, Sonny Purdue on two different occasions to ask him to fix the situation and to “just to do the right thing”. However Mr. Purdue has chosen to ignore this request and has turned a blind eye to the fact that his GA Medicaid department continues their past history of ignoring US Federal ADA law as well as Federal Medicaid rules and guidelines by continuing to put critically ill children in harms way without any regard for their well being. We can honestly say these things because the state has on at least two occasions attempted to completely eliminate us from any eligibility in their program even when they knew full well we had no other means to provide the critical care required for a patient in such a condition.



6. Current status of Medicaid’s latest assault on Peyton’s required home nursing hours:
In late summer of 2004, just two weeks after finally resolving through political means yet another GA Medicaid attempt to completely remove all of Peyton’s home nursing hours (they intentionally misapplied one of their own rules, a common method they employ to try to weed out patients so they don’t have to pay for the care of those that don’t or can’t fight back), Medicaid notified us of yet another proposed care reduction, this time they sought to reduce care levels by 25%, taking the home nursing hours from 16 hours per day to 12 hours per day. After our political strategy was unsuccessful due to the fact Senator Isakson failed to get the GA Governor to act on Peyton’s behalf, we were forced to appeal the decision to the Georgia Office for State Administrative Hearings. During an appeal, the previous care level is maintained until there is a final decision. There is also a chance that if you lose the appeal, the state can come after you for the cost of the continued care levels.


Prior to scheduling a hearing, the Administrative Law Judge ordered the parties to attempt mediation. At the mediation hearing in February 2005, we pointed out the state was not complying with Federal Medicaid guidelines on several levels, including specific US Supreme Court Olmstead decision issues. Our arguments fell on deaf ears and the state refused to acknowledge anything but their own inappropriate rules within their own limited state program, basically saying their program rules allowed them to reduce care over time and that other kids could get by with only 12 hours per day so ours should too. They said their medical portion of the decision was solely based on their private outside consultant’s evaluation of Peyton’s case, even though no one from this outside consultant has ever examined Peyton or been to his home to see the conditions in which his care is provided. Like most government bureaucracies without adequate controls, the state is trying to place Peyton in a “one size fits all box” that is totally inappropriate to his individual needs. This in itself is a direct violation of the Americans with Disabilities Act as well as completely counter to several Federal Medicaid rules.


Clearly the state also does not understand that such 16 to 12 hour reductions completely change the dynamic of the way the nursing care is provided in the home. Having only 12 hours per day would equate to only having a single 12 hour shift by a single nurse per day since 7 to 8 hours is the minimum shift a home nurse could reasonably be expected to work. The home nursing company we use, PSA, is one of the best available. Yet they often have many difficulties staffing even our current 7 to 9 hour shift levels. Any attempt to staff two 6 hour shifts would simply be impossible to reliably provide care and would certainly end in failure, magnifying the risk to the patient, Peyton.


Since the mediation was unsuccessful, a full-blown official hearing was originally scheduled for June 8th, 2005 and later eventually moved to 8/12/05.



7. Strategy to get the state to “Do the right thing”:
Our son depends on his family to make sure he gets the care he needs. We believe we are capable of doing that and that is one of the reasons that God gave us our special gift of Peyton. Therefore we plan to do anything and everything it takes to make the state meet their commitment to the Federal government to follow proper Medicaid rules and guidelines as well as make the state comply with the Americans with Disabilities Act laws enacted and again recently reauthorized by the Congress of the United States of America.


We have a three pronged strategy. First off, we have filed an official Civil Rights complaint against the State of Georgia with the US Justice Department. This complaint alleges multiple violations of portions of the ADA Act as well as specific and willful ignoring of specific Federal Medicaid guidelines promulgated in letter form specifically to each state’s Medicaid director on how to comply with the US Supreme Court’s Olmstead decision. The Justice Department’s web site states that a federal investigation is usually opened in these matters if the facts are correct and that they have a whole division that focuses on these issues. Again, we brought up these issues at the mediation hearing with the state but were basically ignored. We tried to work with the state first on multiple levels, but they are unwilling to listen to reason. Therefore the state has left us no choice but to file the official Federal complaint.


Secondly we will begin a broad letter writing campaign notifying just about everyone we can think of that the State of Georgia, led by Governor Perdue, is knowingly, willfully and intentionally putting critically ill, medically fragile children in harm’s way for no good reason and doing it without any regard for ADA law or related Federal Medicaid laws, rules and guidelines. This letter writing campaign will be directed towards Federal officials, leaders of both political parties, media outlets of all types, every one of the Mink family’s elected officials (at every level) as well as elected officials from other states serving on applicable legislative committees. Hopefully some of the recipients of these letters will realize the ridiculous position the state has taken in the matter and help us pressure the state to “DO THE RIGHT THING”!


Thirdly and lastly, we will seek a judicial verdict compelling the state to provide the needed care levels. Should we not be successful at the upcoming Administrative Law hearing, we will file suit against the state in Federal Court. We will pursue the matter to whatever level needed to maintain Peyton’s critical care levels. In addition to hiring an expert lawyer in the Medicaid field, we have other attorneys that are friends of the family that have pledged their support to help us fight our case. With the help of our friends, we feel we can find the means to fight an extended legal battle with the state if we must.



8. How can you help?
If Peyton’s story inspires you to want to do something to help, you certainly can! We welcome any and all assistance you wish to provide in order to help make the State of Georgia just “DO THE RIGHT THING”. Here are but a few suggestions, but you may think of something else too:
• Pray that the State of GA will see the errors of their ways and that they will immediately revise their policies to properly care for critically ill children.
• Write a letter, make a call, fax or email your elected officials and media outlets asking them to help with this situation, telling them that you want the state to “Just do the right thing!” Use the link "Congress.org - Find National and Local Media" as a starting point to find appropriate recipient contact information.
• Contribute to the “Peyton Mink Critical Care Legal Fund” by sending your any size contribution to Peyton Mink, 2388 Black Oak Dr, Marietta, GA 30066.
• Offer words of encouragement to Peyton’s Mom and Dad. Kelly’s email is kelly.mink@comcast.net and Mark’s email is markmink@comcast.net .



9. Supporting Documentation
This section describes the links below regarding Medicaid correspondence, Doctor letters, letters sent out for help, therapy notes, links to Medicaid rules, Olmstead decision links and similar other documents that support our quest to make Georgia Medicaid to “JUST DO THE RIGHT THING”:


"CMS Olmtead Guidelines to state medicaid directors" Be sure to read “Olmstead update No. 4” at this link as it describes in detail what the state is supposed to do and it will be clear to you the State of GA is not complying with federal Medicaid directives.


"Atlanta Legal Aid Society, Olmstead Decision" This link details the original US Supreme Court case the State of GA lost in their bid to continue to mistreat disabled persons who can least afford to be mistreated.



10. Peyton’s Latest “Near-Death” encounter
In early March 2005 Peyton had just caught the flu and began developing mucous plugs in his trach tube. On the same Tuesday as the OSHA letter was dated notifying us about the current hearing, Peyton had a large plug that was narrowly able to be handled by his mom and the nurse who performed an emergency trach change. However only two hours later Peyton had another plug and things did not go nearly as smoothly as the first episode. The nurse said that Peyton quit breathing and his heart stopped, presumably due to the lack of his ability to breath through the blocked trach tube. The nurse performed CPR on him and working again closely with his mom they again performed another emergency trach tube change and called 911. The nurse got his heartbeat back after performing about a minute of CPR, thereby literally saving him from death. The paramedics then arrived and quoted that protocol required he be transported to the nearest hospital, Kennestone in Marietta. The paramedics were so inexperienced, they tried administering oxygen to Peyton’s mouth, even though he has an obvious trach tube. The nurse rode in the ambulance with Peyton to Kennestone and both parents met them there as dad Mark was at work when this all happened in the early afternoon.


The doctor at the Kennestone emergency room wanted to transfer Peyton to Scottish Rite by Lifeflight Air Ambulance, but it was too windy for the helicopter to land at the hospital. Scottish Rite then dispatched their mobile ICU ground unit and took Peyton two hours later directly to Scottish Rite’s Pediatric Intensive Care Unit. After several tests, intensive therapy, special drugs and the like, Peyton eventually recovered enough to be able to be discharged for continued home care the following Saturday. We were told by the doctors at that time that they would only discharge a patient in Peyton’s condition to us as they knew how well we cared for him in the past considering all his other severe problems, otherwise they said they would have kept him there in the ICU much longer. As an aside, you should know that of all the many times Peyton is required to be in the hospital, he has never been on “the floor” (normal patient room) his entire life. Due to his normal severely fragile medical condition, he always is admitted, treated and discharged from the hospital’s ICU or Emergency room. That is primarily why Peyton’s Pediatrician says we have “a virtual intensive care unit setup in our dining room” to care for Peyton. Peyton’s required care level always easily exceeds the care level provided in a normal hospital setting.



Disability Resources Tracheostomy Link Family Voices
How to file an Olmstead Civil Rights Complaint with the US Dept. of Justice Atlanta Legal Aid Society, Olmstead Decision CMS Olmtead Guidelines to state medicaid directors
Congress.org - Find National and Local Media Email Peyton's dad Mark Theminks' Comcast Homepages