Implemented Changes

A further update regarding the Camp Stand By Me situation: I've heard tell from someone still at camp that, beginning yesterday morning, changes were immediately implemented. Our director began sleeping in the cabins as opposed to his private apartment, three more people arrived to help out the few counselors who are left, and the CEO of Easter Seals was on camp premises until nine in the evening. Though it saddens me that it took all of this internet publicity to prompt Easter Seals into action, I'm nonetheless thrilled that Easter Seals is finally implementing real action. Let's hope that the positive changes continue.

Comments

I just wanted to announce that my blog is now open for comments, both signed and anonymous. I hadn't meant to NOT make comments available before . . . I'm just kind of tech-stupid sometimes. Anyway, please feel free to leave comments on any post!

Mass E-mail from the CEO of Easter Seals

I've received wind that the following mass e-mail was sent today from the CEO of Easter Seals:

"Dear Camp Stand By Me Participants and Families,
Recently there have been a number of blog posts concerning Camp Stand By Me. These posts have primarily come from a former Camp Stand By Me employee, who wrote an open letter to Camp Stand By Me Director Joshua Mayer, and subsequently posted it on her blog. The letter makes accusations about Camp Stand By Me’s working conditions, and how those conditions effect both the employees and campers at Camp Stand By Me.
I want to assure you that I am conducting a thorough investigation of these allegations, and that we take very seriously any negative feedback we receive from our staff and participants. I will share with you the findings of that investigation once it is completed.
Your piece of mind in this matter is extremely important to all of us at Easter Seals Washington. Please don’t hesitate to contact me with any questions or concerns you may have."

Let's hope that this will truly lead to just action being taken.

An Update

I would first like to thank everyone who has liked, commented upon, shared, been inspired to write their own letter/comment, etc, upon my letter to Camp Stand By Me's director. I never imagined that I would receive such a positive response. Since many of you were keen to know the follow-up action, this is what has happened since yesterday afternoon:

*I received an e-mail from the CEO of Easter Seals saying that she "will include" my e-mail "with other information that has been gathered." She also wants me to know that "some changes have already been instituted and next summer's protocols will be scrutinized before, during and after the camp season."

*Mara Mansfield, an online journalist concerned with exposing fraudulent practices of supposedly-squeaky-clean-non-profits, has included my blog post in her latest update about Camp Stand By Me. I am hardly the only one to be speaking out about the outrageous actions of this camp. I am, nonetheless, thrilled to be included in her investigation. Read her post here:http://wisdomwithaheart.blogspot.com/2013/08/embattled-camp-stand-by-me-swamped-by.html
EDIT: it appears that Mara Mansfield's blog has been wiped clean of all posts related to Camp Stand By Me.  I am going to make further inquiries and see if I can find out why.

*I have been spreading my letter through various groups for siblings of people with disabilities, and my mother has been doing likewise with groups for parents of people with disabilities. At several suggestions, I am now attempting to get in touch with media sources in western Washington, but am not really sure where to begin with that (sans sending e-mails to their generic slush-piles), so any tips would be greatly appreciated.

An Open Letter to the Director of Camp Stand By Me

This summer, I had the opportunity to work as a counselor at Camp Stand By Me, a camp for people with special needs run by the Washington branch of Easter Seals. This camp, in theory, provides an inclusive, safe, and fun environment for individuals of all ages and abilities. The reality is, however, that there currently exist many safety and support issues that prevent Camp Stand By Me from being the great place it proclaims to be.

Below is the letter I mailed to our camp director regarding these concerns. Please feel free to share this blog via other blogs, Facebook, Twitter, e-mail, etc. Please also feel free to contact me with any questions or comments you may have.  The hidden horrors of this camp cannot stay hidden much longer without resulting in serious damage to both the counselors working there and the campers they serve, so the truth about Camp Stand By Me needs to be shared.

~

Dear Joshua,

I am writing to you because I have many large concerns regarding the safety and support systems currently in place at Camp Stand By Me for both campers and counselors. 

I was ecstatic when I first received a job as a summer counselor.  I thought that Camp Stand By Me sounded like a fantastic place and I was so excited that I could contribute to this positive, encouraging, and fun environment.  It is for this reason that I struggled for many weeks over whether to quit or not.  I know first-hand, seeing as I have a brother with autism, how few places and people there are in this world who can and will nurture people with disabilities to their fullest potential.  I know first-hand that most of the time, the world that such people with disabilities live in is ignorant at best as to their capabilities – and, at worst, deliberately cruel.  I know first-hand that, very often, these people are not treated as people.

Camp Stand By Me sounded like a salvation from all of this and I welcomed the chance to live there for a summer.  Having now worked there, however, I fear that, despite its great potential, there exist multiple hazards that prevent Camp Stand By Me from being the haven that it could, and should, be.

My concerns relate to state regulations that protect the rights, health, and safety of both the campers and counselors at Camp Stand By Me, so I have a responsibility to share them widely in our community.  These concerns are multi-layered and often intertwined, but in order to make each one coherent, I will first discuss my concerns for the counselors, and then I will discuss those concerns involving the campers.

I would first like to discuss the lack of breaks that counselors receive while working at Camp Stand By Me.  Throughout the summer, you constantly reiterated to us counselors that we are at camp, first and foremost, for the campers.  Our top priority, beyond any of our own personal desires, was to be there to care for their needs and support them in having a fun-filled week.  While I agree that the campers needs must come first, seeing as they often cannot fully attend their own needs themselves, I disagree with the complete disregard that you had for the health and safety of your counselors. 

To be able to care for another person, you must also care for yourself.  If you are not receiving adequate nutrition, sleep, hygiene, and time to yourself, then you will not be able to effectively and kindly look after another human being.  On those days when I was running on only a few hours of sleep because I’d woken up in the middle of the night to shower a camper who’d wet themselves, on those days when I started to notice my own stench because I had not had the opportunity to shower all week, on those days when I’d choked down my entire lunch in under two minutes and then felt nauseous for several hours – on those days, I could not properly care for the campers.  I was irritable, constantly on the verge of tears, and in both physical and emotional pain.  I know my ability to adequately care for my campers was greatly compromised by my own inadequate rest and personal care time. 

It is not healthy or safe for counselors to work twenty-four hour shifts with maybe a half hour break (if even that) for the entire day.  It is even more unsafe for campers with needs as high as the ones that we serve.  It is not, moreover, legal for caregivers (or any employees in Washington state) to work such demanding hours without any breaks; by law, we are entitled to no less than ten minutes to ourselves for every four hour shift.

A possible solution would be to work your summer counselors in twelve, rather than twenty-four, hour shifts.  Another possibility would be that each counselor receives every other night guaranteed off, where they do not sleep in the cabin, so that they can at least have an eight hour respite for every forty-eight hour period.  I realize that this would mean either hiring more counselors or serving less campers per week in order to meet our counselor:camper ratio.  But it would mean a far more safe and supportive environment all around for those counselors and campers who do partake. 

We individuals who choose to work at this camp know that we do not sign up for an easy summer of frolicking in the pool and dozing in the sun while we earn money.  We know that this is a grueling job where our primary responsibility is not to work hard only so that we may go on break, but to ensure that our campers are safe and enjoying their camp experience.  That is all the more reason, however, for our leader to treat us with the same respect for our human rights as he expects us to treat our campers.

I furthermore do not believe that the counselors you hire are adequately trained for the job once it begins.  Rather than spending the majority of orientation week on bonding games and ice breakers, counselors should become better versed and trained in the varied needs of the population we serve: further information on different disabilities, techniques for behavioral challenges, safer ways to transfer people, etc.  The lack of training affects the safety of both counselors and campers at Camp Stand By Me.

I understand that you wanted to foster a supportive environment between we counselors, and I also understand that there is only so much a person can learn from talk as opposed to hands-on experience.  But even the most successful matador is not thrown directly into the ring with the bulls his first day on the job – he would get skewered.  He prepares as best he can through the advice of others and active training, and only then does he don his cape. 

And this training, this preparation to enter the ring, should never stop.  In order to meet the safety needs of both the campers and their own selves, counselors need to receive training throughout the summer, not just one week prior to the beginning of camp.  Of course not every issue that will arise over the summer can be addressed during orientation.  All of us counselors were presented with situations each week that we did not know how to deal with.  That is why it is crucial that we have a leader who can support us all summer. 

I, for instance, as someone with prior experience working with people with behavioral challenges, am fairly adept at dealing with those particular scenarios.  This consequentially left me, and the few others with prior experience in this arena, to deal with all of the behavioral challenges, burning me out faster than many of the other counselors.  This consequentially punished me for having prior experience.  This is not the fault of my fellow counselors; I cannot blame them for not having the knowledge that I already did.  But behavioral techniques can be taught; I certainly wasn’t born knowing what to do.  I did not know, however, how to teach another what is to me, by this point in my life, second-nature.  I, and those counselors less-versed in behavioral techniques, needed further training that we did not receive, which damaged both ourselves and the campers. 

In those instances when I did call upon you to help me or another counselor deal with a situation we felt uncertain how to handle, I always felt dismissed rather than supported.  When one of my campers, for instance, refused to shower and instead persistently ate his dirty attends, lashing out whenever we counselors tried to approach him, we radioed you for assistance.  We wanted you to teach us how to proceed, whether by letting us observe your actions or by talking us through, step-by-step, what to do.  We wanted to know not only what to do in that moment, but what to do in the future.   Instead, we were dismissed back to our cabin as you told us that we looked tired and that you would take care of it from here.  If you want your counselors to be able to care for the population of people with special needs adequately, you cannot brush us off in a moment of true experiential learning.  You spoke very highly of on-the-job training throughout the summer – yet when the actual opportunity presented itself, such talk never transcended into action.

This concern regarding lack of training feeds into my concern regarding the lack of communicative support and leadership.  During my evaluation, you criticized me for not speaking to you directly when I had concerns about how camp was being run.  I will admit that this was a fair criticism.  I do believe, as you seem to as well, that I owe it to people, when I have a problem with a way in which they conduct themselves, to tell them so directly.  But I think you overlooked the fact that you too deserved a critique that went hand-in-hand with mine, and that is that, based on the pattern that had developed between us, no productive action ever resulted from us speaking together.  I always felt useless rather than valued after speaking with you; I felt like an obstacle at your camp rather than an advantage.  

For instance, during the second week of camp on arrival day, a camper I had met not more than five minutes ago began having a meltdown.  He was hitting everyone who passed by, keening deep in his throat, and banging his head against a railing.  Having been told during orientation week to radio you if we ever encountered a situation beyond our means to handle, I called you on my walkie-talkie.  You, however, later reprimanded me for the decision to ask for your help.   You believed I should have handled the situation myself, even though I knew that I did not possess the experience or personal knowledge of this camper that was needed.  I required your help to keep both other campers and my camper safe, and such help was not given.

I stopped speaking to you directly because I no longer saw the point. Nothing positive or productive ever came from the conversation mentioned above, or any of our other exchanges.  Counselors choose to work at Camp Stand By Me so they can learn more about people with disabilities.  Such learning opportunities bloom at every corner, yet they are immediately squashed each time you dismiss us.  Even if you do not agree with the decisions we make, you owe it to us and to the campers to dialogue about the alternate choices we could make in the future, rather than merely sending us away and/or undermining us in front of the campers.

I would now like to turn away from my concerns regarding the counselors and to my concerns regarding the campers.  One of my greatest concerns, as I believe you are aware, is the current philosophy in place concerning behavioral challenges.  There is no emphasis at Camp Stand By Me upon supporting camper behaviors that are acceptable in the community, and no emphasis upon discouraging those behaviors that will one day land them in jail. 

You stated frequently that we counselors are not at camp to modify behaviors, only to manage them; that we counselors should not reward or punish behaviors, merely let them burn out.  I strongly disagree with this attitude.  In the real world, whether an individual has a disability or not, there are consequences for every action.  In the real world, there are consequences for throwing someone else’s iPod into a pool, biting another person on the arm, breaking a window, yanking out a chunk of someone’s hair, or running down to the waterfront without a lifejacket – to name just a few of the behaviors that our campers performed without consequence this summer. 

One of my greatest frustrations, as a sister to a brother with autism, is when I see people treating him or others with disabilities like infants who are incapable of understanding the difference between right and wrong.  Having a disability does not equate with being unable to comprehend moral and/or socially appropriate actions.  A person with a disability is still a person and they deserve to be treated as one.  That is what they want and that is what they deserve.  I know firsthand how challenging this can be – but I also know how damaging even one instance of rewarding, or even just shrugging at, a behavioral challenge can be to this individual.  If they see that they can get away with an inappropriate behavior or, even more crucially, a behavior that endangers both others and their own self, they will remember that – and they will then perform that behavior repeatedly. 

I understand that you do not want to punish these individuals for bad behaviors, but why not reward them for the good ones?  When positive behavioral support is provided, it decreases the challenging behaviors without the need for intrusive interventions.  For example, if a camper behaves appropriately for a set amount of time, they could receive something extra: a trip on our swing, extra time in arts/crafts during rest hour, getting to be the first one in the pool during their swimming time, or whatever activity is especially meaningful to them. If they behave inappropriately, however, they do not get this additional dose of fun.  If we want individuals with disabilities to be able to participate in meaningful activities and employment in this world and not just be drugged up beyond recognition in a group home, then we must teach them how to get along in this world, too – and that means understanding that every action has consequences, good or ill.

I know that we have already discussed my concerns regarding the third session of camp, otherwise known as “sick week,” but I want to reiterate and clarify them here, seeing as we have now both had time to think about how this was handled in the past and how it could be handled in the future.  I firmly stand by the position that, in order to nip that norovirus right in the bud, camp should have been closed for the week the instant it became clear the virus was catching, as soon as more than seven or eight individuals had the exact same illness.  Barring that, at the very least, the sick campers should have been sent home immediately to prevent the further spread of germs.  That is how both workplaces and schools operate, and camp should be no different.  Camp, in fact, should take even more extreme precautions.  After all, people go home at the end of the work and school day – but people stay day and night at a residential camp, spending 24/7 with the same individuals.

You remained adamant all week that, even when a camper is sick, they want nothing more than to partake in camp activities.  I would suggest, next time campers are sick, that you actually spend a bit of time with those campers.  None of the sick campers wanted to do anything that week.  They wanted to lie in their beds all day.  I didn’t blame them; I certainly don’t want to be forced to socialize, run around, and partake in activities when I’m expelling liquids from both ends. 

You may recall that one of my campers became severely sick early on that week, vomiting twice in a single day and then experiencing diarrhea every two hours for the next four days.  But I know that you do not recall what I do, because you were not there: the moment-to-moment agony and exhaustion of fighting to get him to the toilet every couple of hours.  And I do mean fighting: he was in great pain every time he had a bowel movement, so he would resist going to the bathroom.  I would constantly have to think up new tricks just to get him to sit on the toilet – tickle wars, bribes of toast and bananas, electronic toys, stealing his mattress – and, he being such a smart kid, each trick would only work once.  We both became more and more exhausted with this struggle, and more and more irritable.  It became so strenuous for us both that, by his final day at camp, two or three counselors would have to physically haul him to the toilet.  I’m still horrified that I did that to him – that I humiliated him, a teenager perfectly capable of toileting and walking himself, in that way.  But I did it because I knew that it would be even more humiliating for this person who had been toilet-trained for years to have a bowel movement in his pants.  I did it because I knew I was doing the right thing, even if neither you nor he ever told me that.  I did it because, even if you had no idea how little fun he was having, I was nonetheless going to treat him with as much respect as every individual – sick or not, disability or not – deserves.

“Sick week” led to another problem that was never addressed: the fact that our legal staff:camper ratios were not adhered to, compromising both the safety and the fun camp experience for all.  Even though I wanted to allow our sick campers to stay in bed all day as they desired, this became increasingly difficult as more and more of our staff became sick, leaving us severely understaffed and under our expected counselor:camper ratio.  During our low point, for instance, my cabin had two counselors (including myself) and seven campers – nearly double the campers we should have had, given that this was a week where there was supposed to be one counselor for every two campers.  We few counselors who had, by some miracle, avoided the camp illness were barely able to function by this point due to our severe understaffing; we only managed to juggle the needs of both the healthy and the sick campers by completely neglecting our own.

At this point, as you are aware, we did not have enough staff to run a proper camp, so we instead watched movies (the same two movies twice, I might add) and ran around aimlessly outside all day.  Barring the fact that Camp Stand By Me should have never reached this point, once it did reach such a point, camp should have been closed immediately.  Camp Stand By Me is not a babysitting operation.  Our campers can watch movies anytime.  This camp is about allowing individuals to interact with others and partake in activities in ways that they normally cannot, not plopping in front of a DVD for hours on end.  Any babysitter could put on a DVD – and any babysitter is much cheaper than that sham of a camp. 

None of the kids were having fun by this point in the week, and none of their parents were any the wiser because you forbid us counselors from telling them the truth about our camp illness, our severe understaffing, and our hush-hush babysitting operation – which leads me to my next point.  As you are already aware, I feel very strongly about communicating the truth about what happens at camp to both parents and caregivers.  While I understand and agree with you that camp is about having fun and that the parents/caregivers want to hear positive news, they deserve to hear the negative, too.  They have a right to know if their camper became ill, if they exhibited any unusual behaviors, if they refused to participate in certain activities, if someone performed the Heimlich maneuver on them when they choked, if they did nothing but watch Finding Nemo and Ice Age twice within the span of three days – all bits of information that truly did happen at camp.  All bits of information that parents/caregivers remain ignorant of.  Whether they act upon such information is up to them, but these parents/caregivers have a right to the truth – and we have the obligation to tell it to them.

As I already discussed when talking about a new strategy at camp for behavioral challenges, even the slightest variance in routine can be detrimental to an individual with disabilities for months or even years, which is why it is so crucial that their parents and/or caregivers receive as much information as possible, even if it is not positive or fun.  To deliberately withhold crucial information from the parents/caregivers regarding illnesses, behaviors, and/or participation takes great advantage of the fact that the majority of the individuals we serve at Camp Stand By Me cannot speak for themselves.  They cannot communicate if they were ill, if they were taken care of properly, if they did in fact enjoy their camp experience.  It is thus our responsibility to speak for them when something is not right.  Even if an individual cannot communicate their rights, they still possess those same rights as every other human being.

It is disheartening to realize that one of the few places on this earth that claims to stand up for the rights of people with disabilities, when the time comes, would rather focus on preening their appearance than actually defending the rights of these people.  It is disgusting to realize that Camp Stand By Me would rather stand up for itself than for the individuals it proclaims to serve. 

So that is why I am writing to you now.  That is why I am standing up for individuals with disabilities, even if you will not.  I do not know if my message will make a difference to you, but I know it will make a difference to the campers, to their families/caregivers, and to their community.

Camp Stand By Me could be a fantastic place.  Camp Stand By Me could be a beautiful home away from home in which people both with and without disabilities interact, care for, and learn from one another.  Camp Stand By Me could be a model for the entire world of a community where people of all ages and abilities are active, dignified members of society.  But for this to happen, staff and campers must first be treated with the respect entitled to every human being. 

I believe that this is possible.  I believe that Camp Stand By Me has the potential to be a haven for people with and without disabilities.  Whether Camp Stand By Me ever becomes such a haven, and does not merely remain another destructive environment for its campers and counselors, is up to you.

Signed,

Anna Tatelman