Discussion in 'Fibromyalgia Main Forum' started by puggles, Feb 24, 2010.

  1. puggles

    puggles New Member

    Ryan Baldwin has been returned to his parents in Asheville, North Carolina. Ryan was removed from his loving and supportive parents by Buncombe County Department of Social Services and placed into foster homes several hours away from his parents. This is a horrible story that should never have happened but did. Ryan's parents and grandparents have taken Ryan all over the US seeking medical care for Ryan - he has CFIDS and other disorders. But that did not stop BUNCOMBE COUNTY DEPARTMENT OF SOCIAL SERVICES from deciding that Ryan was in "danger" from an essentially, "over-protective mother". Links are below and the article is also below. This is what happens in the US to children with CFIDS.

    See the Baldwin's website for more information: http://www.bringingryanhome.com


    Home for good? Black Mountain couple regains custody of son

    by Nelda Holder in Vol. 16 / Iss. 31 on 02/24/2010 .

    Editor's note: Child-custody cases fall under a peculiar category of the law, with special restrictions meant to protect both the child and those charged with ensuring his/her welfare.

    Tracing Ryan’s history:Lisa Baldwin combs through the “medical library” she has compiled documenting her son Ryan’s illnesses. (Photos by Jonathan Welch)

    In January, we reported on an unusual custody case involving a now 17-year-old Buncombe County boy diagnosed with chronic fatigue and immune dysfunction syndrome (see "Home for the Holidays," Jan. 6 Xpress). At that time, we promised further coverage pending an upcoming court hearing, which was held Jan. 14.

    But even though the custody case has been resolved and the juvenile in question will be 18 in just over four months, state law bars most people from examining the official records without a court order. Meanwhile, confidentiality requirements bar the Department of Social Services from even discussing the case.

    Whatever may be said to justify such protections, they unquestionably pose a significant obstacle to parsing these complex cases.

    Many substantive questions simply cannot be asked (see sidebar, "Unanswered Questions"), making it almost impossible to assess whether the authorities handled a given situation appropriately.

    The following report, then, is necessarily based on what could be heard and observed in open court or gleaned from outside experts.

    "I cannot express in words how much of a living hell that last eight months of my life have been. I can't stress how pointless, unnecessary and painful this whole thing is and has been."

    With these words, 17-year-old Ryan Baldwin emphatically called the authorities charged with protecting him from harm to account for how they'd treated him. The poignant courtroom moment capped a convoluted saga that had totally upended the lives of this Black Mountain family.

    On Dec. 5, 2007, the Buncombe County Department of Social Services received a report alleging that the homebound teenager's medical needs weren't being met because his parents would not agree to some recommended treatments. The report also implied that the mother had factitious disorder by proxy (popularly known as Münchausen syndrome by proxy), a controversial diagnosis that some in the field reject as bogus.

    Ryan, then 15, had been diagnosed with movement (tic) disorder, chronic fatigue syndrome and severe autonomic dystonia. The year before, the Social Security Administration had declared him disabled.
    Under state law, the DSS is required to investigate complaints that, if proven true, would constitute child endangerment, and on Dec. 7, the agency dispatched a social worker to the Baldwins' home to discuss the claims. Due to confidentiality requirements, the Baldwins could not be told who'd made the allegations.

    Familiar turf: After a year in DSS custody, Ryan Baldwin is officially back home with his parents, Lisa and Rodney Baldwin. Thus began a two-year odyssey that would highlight the difficulties of diagnosing, living with and treating chronic fatigue syndrome; the questionable nature of the Münchausen label; and the unquestionable power of the DSS.

    A "family-centered" approach
    Although Angela Pittman of the Buncombe County DSS couldn't talk about the Baldwin case, she did discuss her agency's general philosophy and procedures.

    "It's a very difficult job to balance, to look at and to work with families every day, and to make sure that kids are safe," said Pittman, the county's social work program administrator. Staff members, she noted, "are an extremely committed bunch of people that ... believe in the work and want to get it right."

    Last year, her department's 100 child-service specialists worked with 3,782 minor children and their families, including the Baldwins.

    Like all N.C. counties, Buncombe operates its Department of Social Services under state and federal guidelines. The state rules stress a "family-centered" approach that Pittman said results in "more partnering."

    Absent an "on-the-spot emergency," she explained, the first step in responding to allegations of abuse, neglect or abandonment is to sit down with the family and outline the concerns. "Then we talk about is it viable and is it safe for the child to remain in their home." If that seems unlikely, the department will "always explore kinship options first" — i.e. having the child stay with relatives or family friends.

    If that's not deemed feasible, however, the DSS may actually take custody of the child, albeit with the goal of retaining as many connections to the community as possible (same school, same church, same friends) and making "kinship" placements a high priority. But "the thing that runs throughout," asserted Pittman, "is we are legally mandated to ensure child safety."

    A "multilevel decision"
    In Ryan's case, the safety issue triggered a yearlong investigation, followed by another full year of court appearances and a succession of foster homes. And in the process, the whole idea of "kinship" got stretched rather thin, as Ryan was removed from his home, forbidden to even speak to his parents, subsequently also taken away from his grandparents, and dispatched to foster care in outlying counties.

    In March of 2008, the DSS shipped some 25 pounds of Ryan's records to Dr. Molly Berkoff, director of the UNC School of Medicine's Child Medical Evaluation Program in Chapel Hill, for formal review. It took Berkoff roughly nine months to complete her evaluation. During that time, Investigative Social Worker Jo Galloway visited the Baldwin home regularly, testifying later that she'd never observed "anything overly dangerous for Ryan."

    Berkoff's report finally arrived in late December, triggering a "multilevel decision" to officially charge Ryan's parents with medical neglect, according to Galloway.

    Despite never having met with any of the Baldwins, Berkoff concluded that Ryan was at risk because he didn't have a primary-care physician. She recommended mental-health evaluations for both the boy and his mother, specifically looking for evidence that Lisa Baldwin had Münchausen syndrome by proxy. Under questioning by the Baldwins' attorney, however, Berkoff said that it was the original DSS complaint — not Ryan's medical records — that referenced Münchausen's

    Cut off
    Early in January 2009, Galloway left the Baldwins a telephone message saying their case was being closed and asking them to come in to sign some papers. Instead, when they arrived there on Jan. 13, they were served subpoenas; the DSS had filed its medical-neglect petition that same day. Ostensibly, that simply meant the family would start receiving in-home services to help them meet Ryan's needs.

    Ten days later, however, the DSS asked the court for custody of the boy. The rationale for that change remains one of the key unanswered questions in the case. But removing a child from the mother's influence is a common approach to dealing with Münchausen by proxy.

    The agency's next step seemed to reinforce that strategy: On Feb. 6, Ryan was abruptly removed from his grandparents' home. Dino Frattaroli, Ryan's grandfather, said the social worker had told him this was done because he "bought in" to the boy's illness.

    Ryan had already been denied any communication with his parents, except for brief courtroom exchanges. The grandparents were allowed two phone calls per week — with a foster parent listening in — but were forbidden to discuss any health symptoms or issues with their grandson.

    Ryan's subsequent placements further strained the agency's concept of maintaining strong links to the community. He was first moved to Bakersville (more than an hour away) and then to Warrensville (two-and-a-half hours from home and family).

    On Sept. 28, Ryan — at his request — spoke candidly to the court about the trauma of forcible removal from his family, his discomfort in the foster-care system, and the restrictions on contact with family and friends.

    "Maybe you should think about that," he told the court, "when the subject of socialization comes up."

    In at least one foster home, according to Ryan, his caregivers said they'd been told there was "nothing wrong" with him — despite the specific physical symptoms he'd reported, such as chest pain (in 2008, he'd been diagnosed with a cardiac condition called a left bundle branch block).

    Ryan also expressed frustration with the physical therapy he said he'd been forced to undergo till he eventually refused, saying it had done "nothing but make my fatigue and pains worse."

    "DSS has been trying to address some sort of physical aspect," the now 17-year-old young man observed in court, "but what about the emotional one?"

    Automatically guilty?
    On April 27, 2008, during the hearings on the neglect charges, Dr. Paul Cheney, an Asheville-based specialist in chronic fatigue syndrome, was asked about his experience with "parents accused of Münchausen's."

    The problem, said Cheney, is that CFS is diagnosed based on clinical symptoms, not test results. As a result, he said — citing his profession's tendency to believe that unless there's objective data pointing toward a particular disease, the problem must be psychological — "You're automatically guilty of Münchausen by proxy."

    In popular culture, the syndrome has had a fairly sensational run in assorted books, articles, blogs and TV shows depicting mothers who deliberately make their own children sick.

    And by whichever name, it has drawn considerable scholarly criticism. "It is a mental disorder that is poorly researched and controversial, and very rare," notes Judith Quick, an associate professor of clinical psychology at Argosy University in Tampa. And philosophy professor David Allison of Stony Brook University goes further, calling both Münchausen by proxy and a related syndrome not involving children "little more than constructions of institutionalized medical power" rather than "verifiable disorders."

    Cheney, meanwhile, had this to say about the Baldwins' case after reviewing their records: "No, no; They don't have Münchausen by proxy." And holding up a hefty stack of Ryan's reports, Cheney testified, "This is not the stuff of medical neglect." As for treatment, he continued, "The most important thing to do is not do the bad things," such as forcing the boy to exercise, which could trigger a relapse.

    Cheney did recommend having a primary-care physician as well as a CFS specialist. "That's the best — someone to call in the middle of the night; someone to be in charge of strategic issues," he said, adding that this should be arranged quickly because of Ryan's cardiac problem.

    Ryan had last had a regular pediatrician in 2007. At that point, two different local pediatricians had declined to continue seeing him due to difficulties with his mother. the Baldwins said they'd tried unsuccessfully to find another primary-care physician, and Lisa said she'd asked the first social worker who came to her house for help with this but never got any.

    Ironically, despite the DSS' own rule that children taken into custody must receive a physical examination within seven days, it took the agency seven weeks to get Ryan checked by a pediatrician. And despite the emphasis in the courtroom on the urgent need for a mental-health evaluation, that wasn't done until May 27 — after the hearings on the neglect charges had already been wrapped up.

    Meanwhile, Lisa's psychological exam, which wasn't done until Sept. 23, concluded that the "clinical profile generated revealed no elevations which would indicate the presence of clinical psychopathology."

    Medical neglect or parental judgment?
    During the neglect hearings, the DSS called Ryan's two most recent pediatricians to testify concerning Lisa Baldwin's refusal to follow doctors' recommendations.

    Dr. Mary Uritis, Ryan's pediatrician from 2001 to 2005, said Lisa had resisted using or increasing the dosage of certain medications that she felt Ryan couldn't tolerate. Under cross-examination, however, Uritis recalled various prescribed drugs that Ryan's mother had given her son, including allergy medication and antibiotics. "She was not averse to that," said Uritis.

    Asked if it's unusual for children to have toleration issues, Uritis replied: "You have to go through the risks and benefits. Parents have to make that decision."

    Dr. Teresa Herbert, Ryan's pediatrician from December 2005 to May 2007, said the Baldwins had "sought the best medical care available in the country" and had protected Ryan by getting him "homebound." But, she added, they hadn't followed "most of the advice" from the specialists they'd seen. "Their reason ... sounds legitimate," she said, "but there is a point at which you have to take a chance and trust the physicians." Not doing so, she asserted, "has not helped Ryan." Interestingly, however, a Dec. 12, 2005, report from the Mayo Clinic, where the Baldwins had taken Ryan for evaluation, actually praises them for refusing various drugs, noting: "Previous physicians have discussed with the family the possibility of using medications including ... Haldol for his tics. The family wisely has declined."

    Both Uritis and Herbert had eventually refused to keep seeing Ryan as a patient, and in both instances, his mother filed a complaint with the North Carolina Medical Board. Both doctors testified that the board had exonerated them. (Xpress could not confirm this because, under state law, this information is also confidential.) Uritis and Herbert have since become professional partners at Park Ridge Pediatrics, and they filed suit against Lisa Baldwin last year over statements she made on a Web site she formerly maintained.

    Meanwhile, Dr. Mark Vanderwel, a pediatric endocrinologist in Charlotte who'd evaluated Ryan in September of 2007 and again a year later, testified that he hadn't seen anything suggesting neglect. Asked about Ms. Baldwin's tendency (which was brought out in court) to sometimes overload practitioners with phone calls, e-mails and letters, he characterized it as "her way" of processing Ryan's care and "communicating with physicians the issues that she is concerned about with Ryan."

    And Dr. Teresita Nelson, a child neurologist in Charlotte who'd also evaluated Ryan, was asked if she disagreed with the Baldwins' strategies in dealing with his illness. "I don't pass judgment, especially on a first visit, for what a family does to try and keep their children healthy," she said. "The way I look at it is, I may have the medical degree, but they have 16 years of experience with Ryan."

    A shot at life
    By the time the closing aruments in the medical-neglect trial were presented on May 18, 2009, the specter of Münchausen's had begun to fade, although DSS attorney Charlotte Nallan did accuse Ms. Baldwin of trying to prove "a bunch of other medical conditions that [Ryan] did not suffer from."

    Nallan described the boy's former home life as a "sad, small existence of sitting in front of a TV or lying in bed because his mother is more concerned with his illness than she is with his health." DSS, the attorney asserted, "had to move this child out of the home in order to open up this child's life. ... We've given this child a shot at life — a healthy, productive life."

    In his own closing statement on May 18, Judge Gary Cash said that Ryan's safety had been compromised when "Mrs. Baldwin began to alienate the [local] medical community," leaving him with no access to a primary-care physician. The judge also wanted Ryan's mental health evaluated. For these reasons, said Cash, intervention by the state would be in the "best interest of the child."

    In addition, Cash forcefully urged the DSS to relocate Ryan to a foster home in Buncombe County, which was finally done in June. Over the next few months, Ryan was allowed unsupervised home visits, and on Nov. 20, Cash provisionally sent him home for the holidays.

    Finally, on Jan. 14, 2010, the judge returned legal custody to the Baldwins, encouraging them to maintain continuous primary care.

    Interestingly, the whole timing of the court's action fit almost perfectly into the state's requirement that all custody placements be resolved within one year.

    And despite the apparent finality of Cash's ruling, the Baldwins were surprised to receive another social-worker visit on Feb. 16. The reason, they were told, was that although the judge had returned legal custody to them, he had not, in fact, officially closed the case. Instead, it will close when Ryan turns 18 — unless someone decides to file another motion that would bring them all back into court.

    Meanwhile, in his May 18 summation to the court concerning the neglect charges, Michael Ciochina, the Baldwins' attorney, asked, "Is this really a matter of the DSS gets to step into our personal lives and determine what medical treatment is appropriate for our children?"

    And Dr. Cheney, in his expert testimony, said: "The only thing I can see is I think that mother's a little bit, at times, overbearing, you know — perhaps inappropriate with the physicians. ... But I see that all the time: These mothers get crazy when their kids are sick."

    by N.H.

    The Buncombe County Department of Social Services is legally prohibited to discuss individual cases with either the public or the media. As a result, many key questions in the Baldwin case remain unanswered. They include:

    • Why didn't the DSS work with the family to find Ryan a primary-care physician, instead of citing that as a justification for removing him from his home?
    • After waiting nine months for the medical evaluator's report, why did the DSS request physical custody of Ryan before obtaining the results of the recommended mental-health assessments?
    • Why did it take seven weeks for Ryan to have a physical exam when the agency's own rules require this to be done within seven days?
    • Given the agency's emphasis on "kinship" placements, why wasn't Ryan allowed to stay with his grandparents?
    • Who decided — and why — that Ryan should be barred from seeing either his parents or his grandparents for five months?
    • Were any of the foster parents told, as Ryan testified, that he really had no medical problems, despite his having been declared disabled by the Social Security Administration?
    • What training did the foster parents and social workers have in dealing with CFS patients?
    • What training did DSS workers have in recognizing Münchausen syndrome by proxy?
    • Why wasn't Ryan returned to his home after his mother's mental-health evaluation found no evidence that she had Münchausen syndrome by proxy?
    Click here http://www.mountainx.com/xpressfiles/dss_case_involving_ryan_baldwin to go to Xpress Files and read an interview with Angela Pittman of the Buncombe County Department of Social Services.The interview was given with the express stipulation that individual DSS cases could not be discussed.

    [Freelance reporter Nelda Holder can be reached at nfholder@gmail.com.] - NOTE: Ms. Holder did an outstanding job during the entire time Ryan and his parents and grandparents were battling the Buncombe County DSS system.
  2. quanked

    quanked Member

    I am so tired of hearing the word "confidentiality" in relation to child welfare. I could be wrong but I believe that at some point a child can (if not his parent(s)) could waive their right to confidentiality--at least in cases of of unfounded charges. In this case it seems that the child in question could waive his rights when he turns 18.

    I will be curious to see what happens in this case.

    Thanks for posting.
  3. AuntTammie

    AuntTammie New Member

    I am SO glad he is back home......but the way that this was handled was unbelievably horrible.....in IL, even in cases where abuse is pretty clear, it is often very difficult to take a child away from family so I can't understand how this could have been allowed to happen (I know each state is a bit different, but the laws are mostly fairly similar)

    & of course the mother didn't want to force him to take meds he had problems with - I know how awful of an experience I have had with some meds and how hard I have had to fight to get people off my back about not taking them......children often react worse to meds than adults, and Haldol (the one that was mentioned) is a really strong drug.....no wonder his mother fought that....it is abusive of those trying to force him to take the meds that he cannot tolerate; not abusive of the mother to get him off them

    and quanked, I know that when it comes to mental health issues a child is allowed to determine if something is confidential (or not) when he/she is 13 (unless someone's life is in danger), so he is most definitely old enough to decide......I think that medical issues have similar age limits, but I am not positive about that
  4. illroy

    illroy Member

    I'm very glad to hear this. :)
  5. nfholder@gmail.com

    nfholder@gmail.com New Member

    I appreciate that you have shared the story on the Baldwin family's situation. I would just like to encourage folks to go to the Mountain Xpress web site, since you can find additional information as well as other comments there -- and since it was this small paper that put forth the effort to get this story into print. I'm sure they would appreciate the "traffic."


    (Nelda Holder, freelance writer who authored the story)
  6. victoria

    victoria New Member

    The comments are really illuminating... I couldn't see why a child officially disabled by SS could be removed like that, but now I do after reading one of the 'comments' referencing this article:

    DSS ‘Follows The Money;’ Makes An Extra $90 Million Per Year
    What’s ‘Best For The Child’ Is Secondary To ‘More Federal Money’

    Massachusetts News
    By Edward G. Oliver

    December 1--The Department of Social Services is using financial consultants who specialize in advising the state how to aggressively "maximize federal revenue." This means that the decision as to whether to remove a child from his parents is often a factor of whether the DSS can get more federal money, according to many experts. It is reported that the Department is making an extra $90 million a year by this method.

    ...Incredibly, the Texas report frankly admits, "States typically obtain more revenue from the federal foster care program by increasing the number of cases that are eligible for federal reimbursement.

    ...Broadly defined "disabled" children are also very profitable. The foster child population is in fact heavily weighted in those categories now and those parents are least able to fight their removal.

    ...Virginia based researcher Emerich Thoma, who uses foster care and child welfare data from many states, mentions that, "Two Massachusetts studies serve to demonstrate the inextricable link between poverty and child removal." He says that in a study of abused and neglected children entering a hospital emergency room it was found that if a physical injury was severe, it was less likely that the child would be removed. "Specifically, the researchers found that the highest predictor of removal was not the extent of a given physical injury, but rather whether or not the family was Medicaid-eligible. "

    rest at: http://www.massnews.com/past_issues/other/12_Dec/dssfed.htm

    So disgraceful. I hope there is some recourse for Ryan once he turns 18.


    [This Message was Edited on 02/26/2010]