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The Final Decade: Jon Henley

First Victim, Jon HenleyIn 1997, the same year that Au Clair changed its name to Advoserv, the family of Carlton Palms resident Jon Henley received devastating news.

Tuesday, April 8 1997, The Orlando Sentinel published the obituary of St. Thomas resident, the minor, Jon Henley, age 14.  At right is the official published accounting of Jon Henley's death. It is his obituary.

However, in 2015 Heather Vogell and ProPublica published a much more thorough review of Jon Henley's final hours:

First Victim, Jon Henley Tue, Apr 8, 1997 – Page 2 · The Orlando Sentinel (Orlando, Florida) · Newspapers.com
On April 2, Mazik telephoned relatives of a 14-year-old student to tell them the boy had died of an apparent seizure at Carlton Palms. A caller to the state’s abuse hotline a few months later reported that the boy, Jon Henley, hadn’t received immediate medical care for the seizure, and that staff had neglected him. - https://www.propublica.org/article/advoserv-profit-and-abuse-at-homes-for-the-profoundly-disabled
This is a summary of Vogell's reporting of this incident:

While preparing her story, Vogell reached out to Laurice Simmonds-Wilson. Prince Jon Jon, as his family affectionately called him, had been sent to Carlton Palms because his school district in the Virgin Islands was unable to provide the appropriate setting for him. Prince Jon Jon had autism and seizures.  On April 2, 1997, Ken Mazik called his family to inform them he had died as the result of an "apparent seizure." Carlton Palms paid for his casket and the cost of returning his body to the Virgin Islands.

In 2015, through Vogell, Simmonds-Wilson learned for the first time that there had been an investigation in Prince Jon Jon's death. A few months after Jon Jon's death, the state abuse hotline received a complaint - Jon Henley had not received immediate medical care for his seizures and had been a victim of neglect. The investigation found:
  • His roommate reported that Jon Jon was shaking in his bed early in the morning. Staff failed to help him.
  • Jon Jon was laying facedown in his bed. One staffer admitted telling the boy to be quiet because she assumed he was masterbating.
  • Workers were supposed to check on Jon Jon every fifteen minutes. However, he was found at 7:30 am, dead, still lying facedown in his bed.
  • Jon Jon's autopsy revealed that his blood titers for his anti-seizure medication were far below therapeutic levels. 
Yet, Vogell would discover that, "ultimately, despite signs of potential lapses in care, the sheriff's office did not file criminal charges and state investigators closed their inquiry with no finding of mistreatment. The facility faced no repercussions."

Advoserv offered this statement: "Carlton Palms cooperated with the investigations, which found no wrongdoing, and that '[w]hen incidents like this occur, we responsibly address them.'" 

"When incidents like these..." How many had there been? How many were to come?

Simmonds-Wilson would opine differently. Her family had never been notified that an autopsy had been performed on her beloved nephew. According to Vogell, the family felt they had had been deceived. 

"Jon Jon deserved justice. Period."

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Carlton Palms, Sensativity Message

Countdown to the end. It wasn't Carlton Palms' finest hours. The documented and confirmed episodes of abuse are consistent with the creation of a beast so large it cannot be contained. One could opine that facility was akin to doctor mills, except these patients didn't leave but for extreme circumstances. And, to be fair, there were families who deeply believed their loved one was receiving the best care possible. It is not our intention to deprive those families of their beliefs or their support for Bellwether. There will  always be two sides to this story. At least. What Echo has attempted to do is capture what is fact. It's been an effort in restraint. There has been no room for leads and rumors that haven't been substantiated through mainstream channels. Often, there has been difficulty getting agencies in Maryland and Florida to acknowledge Requests for Information and Freedom of Information Act requests. The failure of the departments in each state have stymied our research. However, this blog has consistently relied on accounts previously printed in superior publications, written by trained journalists, fact checked with diligence, and ultimately attributed to these writers and publishers. We owe these reporters and publishers a debt of gratitude.

This is our very special episode of Dr. Phil. Our message above is an effort to warn readers that the posts that follows in the next several posts is sensitive. It is heartbreaking. Gut-wrenching. Devastating. It is the most accurate truth recorded publicly to date.

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AfterEffect Drops in Seven Days, Have you been listening?

https://www.wnycstudios.org/shows/aftereffect

Aftereffect, hosted by Audrey Quinn, has dropped.

ARE YOU LISTENING?

A New Podcast Series Examining How America Fails People with Developmental Disabilities through the Experiences of an Autistic Man Involved in a Police Shooting

What we've learned so far... 

As Charles Kinsey lay bleeding in the street, we hear his shooter (a police officer) say it was a bad shot, the sniper was aiming for the other man.  The other man? He meant the autistic Hispanic man playing with his toy truck as he sat on the street, seemingly unaware, locked out by his disability? Was he a threat? This is where Audrey Quinn's story begins. 

It was a steamy summer of black lives verses blue lives. Amidst national outrage on both sides of the debate, completely unaware of the color war, Arnaldo Rios Soto left his North Miami group home. He wandered down the street and sat in the road with his toy truck. His caregiver, a black man named Charles Kinsey, went to retrieve him. A motorist mistook Arnaldo's toy for gun and called 911. Police arrived and ordered Kinsey to lay down with his hand up. He complied while cell phone video shows him both pleading with Arnaldo to do the same and yelling to the officers that he is Arnaldo's caregiver. Kinsey is shot in the leg. The sniper calls it bad shot. Audio of that day reveals that the shooter claimed to have aiming for the other man.

Following the shooting, Arnoldo was subdued, cuffed with his hands behind his back, and put in the back seat of a police cruiser for several hours while police worked the scene. No one noticed that with his hands restrained Arnoldo could not perform any of his calming measures - flapping his hands, playing with a toy. Instead, he screamed...for hours, after questioning he was returned to his group home. 

The next day, Arnoldo, having had time to process what happened the previous day, eloped again. He returned to the scene where Kinsey's blood still marked the moment police violence had entered their lives. It was clear that Arnoldo was far more traumatized than anyone had previously assumed, assumptions made because Arnaldo was not conversational. 

Unable to contain his grief, Arnaldo acted out. His group home providers sent him for admission to a psychiatric program where he floundered in a system that lacked a proper placement for him. Arnaldo was kept in the psychiatric unit for more than 30 days as the State of Florida searched for a home for him, again. It seems that Arnaldo had been stuck in a revolving cycle of psych placements and group homes. With Kinsey, Arnaldo's family believed he was making progress.  However, Kinsey - who did survive his injury - would never return to the caregiving field of work.  

Eve
ntually, representatives from Carlton Palms came calling. Arnaldo had a new home, a facility with a history of abuse and neglect. It's Halloween when Quinn first meets Arnaldo. He's dressed as a police officer as are most of housemates. Think about it. Arnaldo had been at the center of a police shooting. He's seen his caregiver injured. He's been cuffed, left in a police car, questioned in a police station, and drawn back to the bloody scene. Did police costumes constitute Aversion therapy? Nah, Carlton Palms just got a good deal on police costumes.

 In episode three, Quinn begins to delve into Arnaldo's past. She learns how his mother fought for a diagnosis and access to education for her son. Quinn discovers that Arnaldo has ahistory of being turfed from one setting to another. She's told that the sweet man before her has a past spotted with violent episodes. Quinn's learning that autism is not just a spectrum but that it has two faces. She's also wading into the adult developmental disability service/support system -underfunded, a patchwork cobbled together, an industry consumed by for-profits seeking the highest Medicaid reimbursements they can attain. Here, restraint isn't an option, it's requisite, as countless substantiated complaints about Carlton Palms confirmed. 

Of particular takeaway for parents of those who are developmentally disabled, Quinn interviews autistic people. Yes, Echo is not using people first language; Quinn's sources do not see themselves as a person with extra baggage; rather, they see their autism as an inherit part of themselves which they value. The dichotomy is startling when the conversation turns to self-direction, a requirement of facilities that receive funding under state Medicaid Waivers. These intuit autistic adults turn self-direction on its head and is cause for even the best parents to pause and consider the amount of authority they expect their special children to exercise as adults. Lack of communication skills does not negate the individual mandate. 

What happens next? What was particularly cruel about the Halloween costume? What is the Baker Act? 


Episode Four drops tomorrow!


Live in Florida or Delaware? Then this podcast should be of special interest to you!
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How Carlton Palms Became a Florida Monopoly

Oh, Nina Bernstein!

When the welfare reform bill became law in 1997, Carlton Palms was nearly ten years old. It had opened under the premise it would serve 20 to 30 students, as reported at the time by the Lake Sentinel. By 1990, Carlton Palms was serving 48 clients from 28 states.  In 1997, the company, rechristened Advoserv, cared for 120 children and adults in Delaware, New Jersey, and Florida. At its height in 2015, Advoserv would house more than 700 severely disabled children and adults. 

In the late 1990's Au Clair rechristened itself Advoserv. The "new" company began to carefully tread waters in Florida, a full five years ahead of their efforts to stymie reform in Delaware. 


During the following decade, a series of bills were passed in the U.S. Congress following the welfare reform bill that had opened the floodgates of funding for state and federal funding for-profit facilities. 




An unusual event occurred in 2003, perhaps this could have been the first crack in the foundation for Carlton Palms. The State of Florida temporarily cut-off a lucrative voucher funding stream to 21 private schools. Each had failed to submit proper paperwork for various Education Department tuition-voucher programs. Carlton Palms found itself on this list. The affected schools were given to December 15, 2003 to make corrections and resubmit applications. Facilities that failed to comply would not receive their Feb. 2004 voucher payment. -


  •                        -The Orlando Sentinel,
  • 29 Nov 2003, Sat,
  • Other Editions,
  • Page B3



  • However, Carlton Palms rebounded tenfold. 
    Florida began adjusting policies to comply with the new federal mandates and allowances. In 2006, the "legislature statutorily created the Comprehensive Transitional Education Program (CTEP) to serve individuals primarily, though not limited to those with developmental disabilities, who have severe or moderate maladaptive behaviors."   - http://disabilityrightsflorida.org/documents/Carlton_Palms_Report_3-5-18.pdf 

    The intention of the bill was to provide services that were required to be temporary and delivered with the primary goal of achieving principles of self-determination and person-centered planning. The plan was to transition clients to the most appropriate, least restrictive community living program of their choice. That final program of choice could not be operated as a comprehensive transitional education program. CTEP was banned from being the long-term solution. -https://www.flsenate.gov/Laws/Statutes/2018/393.18

    Yet, many who entered CTEP appear to have never left. The only facility in Florida to benefit was Advoserv and its reputation was less than steller. Lobbyists went back to the Florida legislature repeatedly over the next ten years to revise the legislation - winning more beds, more tiers, and more people living together than had been typically allowed nor considered best practices.  With the revisions also came higher Medicaid payments for residents compared to other programs in the state. Money funneled into Advoserv's vast campus', but it's unclear who if anyone funneled out. HIPPA.

    No. That's not true. There are six known victims of Advoserv, aka Bellwether Behavioral Health.  We know they left because they trickled out by ambulance. This may or may not be an exhaustive list.  Given the way records were kept fifty years ago, there may or may not be other victims like John Doe 1998. A resident of Delaware's Au Clair/Advoserv/Bellwether, John Doe died in 1998 after reportedly having seizures. Aside from Delaware's News Journal citing an ambo call and a later correction, efforts to identify John Doe have yet to yield a result. To date, Echo has identified six Bellwether-related deaths, Bellwether legacies:

    1. Paige Lunsford (Florida), 
    2. William James Lamson (Florida),
    3. Jon Hensley (Florida),
    4. John Doe 1998 (Delaware), 
    5. Janaia Barnhart (Delaware),  
    6. Susan Osborne (New Jersey)…
    How did Bellwether manage to have a monopoly in CTEP beds? Heather Vogell of ProPublica unearthed a small caveat imbedded in Florida law. From 2006 to 2015, Bellwether's special status was protected by carefully worded legislation that required the state to contract only with facilities that had obtained their license(s) prior to 1989. Carlton Palms fit that bill with flourish where few other facilities had roots as deep as 1989.


    Bellwether began to feel the winds blowing in a new direction. By 2010, an alarming letter penned by Carlton Palms Director Thomas P. Shea found its way to the parents of his residents.  Shea opined:
    “Both the Florida House and Senate in their efforts to reduce next year’s budget have proposed to reduce the budget by placing a cap for reimbursement for Tier One intensive behavior services for the coming year. The proposed cap is so far below what one could reasonably expect to provide professional, safe, humane, clinical and educational services that we will not be able to serve you and [your child] as of the end of June.” “… We are now at the point of no return for our program’s survival.”
    Despite years of lucrative Medicaid payments, the possibility of caps unnerved Shea. He implored families to sign a petition, attend legislative hearings, and seek out their elected officials to plead on Bellwether's behalf. Legislators received a flurry of "Dear Fellow Floridians" like this one:
    It's not surprisingly that Echo has been unable to locate a public follow-up presser from Carlton Palms regarding the final word on Tier I funding. Yet, it seems the strategy prevailed. The Quarterly Report on Agency Services to Floridians with Developmental Disabilities and Their Costs , First Quarter Fiscal Year 2011/12  (July, August, September) submitted November 2011 shows Tier 1 as having no cap whereas Tiers 2-4 were capped at varying amounts.  
    Again, Carlton Palms escaped unscathed.
    Next: Cartlon Palms, The Final Decade


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    Florida and H. Middleton's Vacation Resort

    Nina Bernstein had opined correctly. For-profit facilities had compromised the care of the children within them. Chronic weaknesses in state regulations had allowed profit-seeking entities to lobby successfully for loopholes and influence. And one man had indeed masterminded a national policy shift without the scrutiny owed to those who would be affected by that policy - the profoundly disabled.

    Heather Vogell would reach the same conclusion in 2015: 
    A deep examination of Advoserv - a veteran industry player now owned by a private equity firm - show how a powerful, well financed provider can exploit a fractured system, using its deep pockets to beat back sanctions, bully regulators and shape the very rules it plays by. - http://www.wmfe.org/how-a-mount-dora-group-home-evaded-regulators-as-abuse-allegations-piled-up/55155
    Harlow Middleton's Vacation Resort dba Carlton Palms II
    • A day later, May 23,1991, The Orlando Sentinel announced the addition of a new face to Au Clair Palms, John J. Mulvena; they noted that the Center's Clinical Director Dr. Judith Favell had been named president of the Association of Behavior Analysis International.

    • There is little to archive about the mechanics of Carlton Palms from 1991 through 2005.  It was a decade of silence, although there are handful of noteworthy tales to share on another day, but none that Echo could find that apply here.  Locals and aficionados, please feel free to leave leads in the comments.
    • Harlow Middleton's Vacation Resort - The Expanded Au Clair/Advoserv/Bellweather Campus

        Next: Florida, Part II



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    As quietly as they came, they left...

    Shortly after blogging out Echo's last post, the Gingerbread House in Delaware grew eerily quiet.  No more shift changes, no more cars, no more people. When the last of the fleet of vans disappeared, a silent pall fell about the mansion. The normally well-manicured lawn grew high with meadow grass. It was clear to neighbors the estate had been abandoned. 

    Oh, the places you'll go:
    “Congratulations!
    Today is your day.
    You're off to Great Places!
    You're off and away!”
    Dr. Seuss, Oh, The Places You'll Go!
    To rehome yourself in the Garden State
    Your ventures in Delaware met with grim fate...
    And Florida, do we dare to go there?
    You've left them with very little fanfare.

    So watch out New Jersey and Virginia, too.
    Be alert for Bellwether, they are coming to you.
    - Echo

    As quietly as Bellwether appears to have exited Delaware (mainstream media has not picked up the "loss" the storied organization,) it has abandoned its Carlton Palms location in Florida with just a hint of press. On May 10, 2018, the Agency for Person with Disabilities (ADP) issued Closure Guidance. In April, the State of Florida revoked the facility's licensing. In response, Bellwether informed ADP that it planned to close both the facility and stop operating its two residential/group homes on May 31, 2018. Bellwether indicated that it would transfer ownership of the residences to another service provider rather close them. http://apdcares.org/news/news/2018/palmsclosure.htm  

    In an April 24 letter to agency director Barbara Palmer (of ADP), Bellwether Chief Executive Officer Michael J. Martin wrote, "We are dismayed by these allegations, many of which we deny outright, and others we feel are misleading." In the letter, Martin said Bellwether didn't intend to renew licenses to operate Carlton Palms that expire at month's end. - https://www.msn.com/en-us/news/us/carlton-palms-facility-for-severely-disabled-to-close-after-state-moves-to-yank-license/ar-AAx8iD4
    ADP responded by filing for  emergency receivership and on May 23, the court appointed Dr. Craig Cook, executive director of Attain, Inc in Orlando, to manage Carlton Palms. His term is expected to last up to 120 days as the remaining Carlton Palms residents are transitioned to other community-based settings. 

    From Attain's Website: 
    Craig A. Cook, Ph.D. is the Executive Director of Attain. Dr. Cook has over 20 years experience supporting people with developmental disabilities, including autism and down syndrome. Dr. Cook’s experience includes directing residential programs, intensive educational programs, vocational and day services, along with applied behavior analysis services. Dr. Cook is a Board Certified Behavior Analyst (See www.bacb.com for more information). He received his undergraduate degree from St. Cloud State University in Psychology, with an emphasis in Applied Behavior Analysis. He received is Master’s of Science degree in Behavior Analysis and Therapy with an emphasis on developmental disabilities. He received a doctorate degree from the University of Central Florida in Public Affairs with an emphasis in organizational behavior management and organizational leadership. - https://myattain.org/about-us/

    Oh, the place you'll go. 

    Fame! You'll be as famous as famous can be,
    with the whole wide world watching you win on TV.

    Except when they don't
    Because, sometimes they won't.

    I'm afraid that some times
    you'll play lonely games too.
    Games you can't win
    'cause you'll play against you. 

    Dr. Seuss, Oh, The Places You'll Go!