The Crisis of Incompetency

 

Over the past several years you have undoubtedly read about what some have called an “Autism crisis.” About ten years ago, a well-financed and media savvy organization announced the alarming and growing number of children diagnosed with an Autism Spectrum Disorder. Was this an actual “crisis” or a marketing strategy to create more awareness about Autism with the goal of attaining research dollars, public policy leverage and the validation of their family members’ Autism diagnosis? Real or contrived, the alarm was sounded, and the worldwide public heard it. Much has been achieved because of the highly successful media campaigns centered on the notion of an “Autism crisis,” yet were these media-minded campaigns based on truth or fear mongering? That question has yet to be scientifically or otherwise answered by anyone.

There is however no question that we must continue to do more to assist individuals diagnosed with Autism achieve their potential, not only in childhood, but throughout their lives. The Daniel Jordan Fiddle Foundation, a pioneer in the advancement of programs, public policy, resources and support systems benefiting the diverse population of adults diagnosed with Autism, has led the charge to enhance general awareness that Autism is a lifelong condition that needs the engagement of society as a matter of human rights to open doors of opportunity so that adult individuals can live, work and recreate as they choose. The message of the all-volunteer run Daniel Jordan Fiddle Foundation is not contrived as a marketing strategy; it is the reality for adults diagnosed with Autism.

There have been many achievements accomplished since The Daniel Jordan Fiddle Foundation began its mission almost sixteen years ago, and one measure is that there are several other organizations and advocates calling attention to adult autism. But now, in 2016, with all the new attention being paid to adult autism, is it being done in a way that will truly affect change, or is it yet another marketing strategy for those seeking to jump on the bandwagon of what is the “topic of the day” so that they or their organization can get their name in lights yet again? New books have been written recently, interviews by well-positioned media darlings have been had, the same voices and faces we have seen for decades on television or writing books are again labeling what they proclaim is a new “Autism crisis.” The “self-anointed, popular clique” of “self –proclaimed experts” are at it again. The question comes to mind: does this really help the adult individuals diagnosed with Autism live better and more fulfilling lives, or does this help the authors and organizations line their pockets and get their name in lights as they proclaim the next “Autism crisis?” Something to think about, as history repeats itself.

Should we as a society, again follow like sheep in a herd as the next “Autism crisis” is heralded or should we question the authors, the media darlings and those who have made a name for themselves in the business of Autism as to the accuracy of their proclamations?

Ask any adult diagnosed with Autism, or in many cases his or her parent, since many cannot advocate for him/ herself, what their biggest challenge is and they will tell you it is the broken system. When a person transitions from school age entitlements to adult life the system of supports, the stream of information, and the selection of services are incompetently managed through a bureaucratic system that is mind-boggling. The broken system is the crisis that needs addressing, and this not only affects children transitioning to adult life diagnosed with Autism but all children diagnosed with a disability. The call to action that needs to be heard is a call to change the broken system of incompetency.

Please let’s not again fall prey to the voices who have access to media and those who possess the power of money. Let us listen to the individuals and families once and for all, not the self-proclaimed prophets who profit.

The crisis is not a new “Autism crisis” just because those we hear in the media now have adult children and proclaim it so. The crisis is one of an incompetent system that has been around for decades and will continue to exist unless we as the public stop “walking” in the wrong direction and take real steps in actions to change the systems on which adults diagnosed with Autism rely.

 

 

 

 

 

 

 

 

 

 

 

 

 

BIG BROTHER IS MISGUIDED and LACKS A VISION FOR THE FUTURE THAT REFLECTS AND RESPECTS THE DIVERSE CHALLENGES OF ADULT AUTISM by Linda J. Walder

Occasionally it is necessary to roar, and roar loudly, and now is one of those times.

States across the nation, including The Daniel Jordan Fiddle Foundation’s (http://www.djfiddlefoundation.org) home state of New Jersey are in the process  of establishing Statewide Transition Plans (“Plans”) that will affect the lives of thousands of adult individuals diagnosed with Autism and other disabilities (“adults”) and those who are aging to adulthood in the next generations.  These Plans have been federally mandated and apply to States receiving Medicaid Home and Community Based Services (“HCBS”) funding that is used to finance in particular residential and employment opportunities for adults. Basically every State in the nation will be affected as most receive such funding. The core of the mandate is that states receiving Medicaid funds are required to meet the needs of individuals who elect to use these funds for long term services and supports in home or community settings rather than in institutional settings. On its face, this sounds good, even wonderful.  No more of the Willowbrook style institutions portrayed in Geraldo Rivera’s riveting reporting.  No more isolation and segregation of people with disabling challenges.  On its face, it sounds like human rights are being served, but are they? And is this mandate truly as person-centered as it proclaims?

The Centers for Medicaid & Medicare Services (“CMS”) from which this mandate derives may have all the best intentions in the world, but intentions not grounded in knowledge can be dangerous.  Dangerous is a good word here, and I am not being an extremist to use it.  Without going into the minutia of the CMS ruling, one of the most controversial areas is that States must provide residential options for individuals within the community, and there is a general laundry list of requirements, some that leave a great deal of room for interpretation. In New Jersey, for instance, the proposed state transition plan has interpreted the ruling to mean that there can be no more than 4 people per residence, which may be expanded to 6 for programmatic reasons. Why is this dangerous?  Well first, in the world of Autism, one size does not fit all and this limitation is one-dimensional. Autism is diverse, and the needs of one person are vastly different from those of another person diagnosed on the spectrum.  For some Autistic individuals living in a residence with 4 other people in the community would be fine but for many others it would be dangerous.  Many adults require 24/7 support and are not safe in group homes or apartments with a roommate.  These individuals need much more care than that, for instance: they take multiple medications that they cannot manage on their own; they do not have independent life-skills; they do not have the cognitive acumen to live on their own safely; and they are behaviorally ill-equipt to manage independent life in the community.  Yet CMS and its ruling lump everyone into one category as if each person had a similar profile, and this is based on what?—certainly not knowledge about Autism and how it affects a diverse population of adults. Supposedly stakeholders will be able to weigh in on the effectiveness of their residential setting however if there are no options that exist that are suitable where will they turn and where will they live?

A suitable and safe option for the many Autistic adults who are severely challenged and who require 24/7 care and supervision is what is known as congregate housing where they and their peers can live in a safe, supervised environment that can provide the supports and services they need.  THESE ARE NOT INSTITUTIONS and that is the misconception that is being harbored.  There are assisted living and campus style programs for instance throughout the United States that are based in communities.  These farmstead, suburban and urban enclaves have well-designed programs, employment opportunities and training and recreational activities that are appropriate for the individuals who reside there. They provide safe and varied living accommodations including apartment style homes and group home style homes.  People are not cloistered in these sort of residential places, they are in the community as much as possible but they also enjoy the benefits of being in their own tight-knit community with familiar friends and staff. Is every place perfect? No. However, the key components that make for a safe, happy, healthy and yes, as independent a life as possible, are there. (Furthermore, one could argue that individuals living in these settings are less isolated because they are always around other people rather than in a home where they only see a small number of people in their living environment on a daily basis.) Yet if the Plans interpret the CMS ruling as New Jersey is, these types of residential options would not be in compliance.

How can we, as a community at large, claim that we are providing the best lives possible for people living with disabilities if we do not listen to their voices, and that means all of their voices, which in many cases is the voice of a parent or caregiver. It seems to me that Big Brother has mainly listened to the most well-spoken advocates but what about those who cannot speak?  And aren’t those who cannot speak for themselves the ones most at risk if the proposed Plans are enacted?  How can we as a society claim we are caring for our most vulnerable citizens if we make decisions for them based upon misguided assumptions and a lack of in-depth understanding of the daily challenges these individuals face? We cannot accept only options that will fit a certain portion of the population of individuals and that thwart the development of new models.

I have focused here on only one specific mandate that States throughout the nation are going to have to wrestle with, but there are several issues, including those relating to day programs, that hark back to the same problem of Big Brother being one- dimensional in its application of policy. You may ask, how will this affect you as a citizen who does not have an adult family member with a disability?  My answer to you, is that it will affect you greatly, and this is based not only on the numbers of adult individuals directly impacted in your community that is ever growing but also and even more importantly it is a matter of moral obligation.

The families of our most vulnerable adults who will be directly impacted by the Plans are living in fear for the safety and well-being of their adult children because Big Brother is calling the shots without knowing their child and his or her needs  while espousing that its direction is in their child’s best interest.  The CMS ruling is cutting off community- based options by offering a very limited menu of uninspired options. Real estate developers of all types of residential opportunities are poised to create these options but cannot and will not in the restrictive paradigm that exists.

Please join me, and The Daniel Jordan Fiddle Foundation in our efforts to first and foremost support all adults so that each can live the fullest life possible that honors and respects their individuality. Go to our website to hear their voices and those of their families as I interview a panel of sadapttake-holders at a Congressional Briefing https://www.youtube.com/watch?v=fLGc7pEEzWA&feature=youtube_gdata  The eyes we open through our efforts today will be the vision we aspire towards for all.

Here is a link to CMS ruling:

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Home-and-Community-Based-Services/Downloads/Final-Rule-Slides-01292014.pdf

We are back…Missed you All…read our latest post from Amy Gravino, DJFF Self-Advocate Leader

Time passes so quickly, and we have missed you. But now Linda and The Daniel Jordan Fiddle Foundation are back. We have decided that our first new post should be one written by an adult advisor to our organization, Amy Gravino. There are a couple of good reasons for this:
1) The Daniel Jordan Fiddle Foundation mission is reliant on the thoughts, needs, ideas and issues that affect adults on the spectrum, and all we do is guided by this;
2) Many adults living with Autism have certain preferences for activities, interests, pursuits that make them experts in that area and that inspire them to live fulfilling lives—in short, they find enjoyment doing these things;
3) From time to time we will highlight examples of these activities, pursuits, interests etc. that bring joy to an individual on the spectrum to hopefully inspire others to find their own “joy in the journey” (which is a raison d’être for our blog).

So without any further comment by us…here is Amy’s unedited by us, blog about something that brings happiness to her life—-

“I Left My Heart In Davy Jones’ Locker”
by Amy Gravino

//Here we come, walkin’ down the street…//

I can remember the smile that stretched across my face the first time I heard those lyrics from the television theme song for The Monkees, and saw the images of four fun-loving boys jumping and playing on my screen.

The Monkees—Micky Dolenz, Peter Tork, Michael Nesmith, and my then-favorite, Davy Jones—were as new and present to me as any other musical act that hit the scene when I was in the seventh grade. I had no cognizance of them as a band from the 1960s, out of a place and from an era that was long past.

But for a nearly-teenage girl with Asperger’s Syndrome walking the junior high school hallways of 1996, falling in love with a band that hadn’t been popular in thirty years did very little to enhance my already-lowly social standing.

I remember looking for pictures of the Monkees online, mainly on Monkees.net, which was the only Monkees website I could find at the time. I printed the pictures out, one by one, and proudly hung them on the inside of my locker door. Every time I opened it and saw their smiling faces staring back at me, it was as though I had four new friends, and the loneliness and self-hatred that I felt would abate, even just momentarily.

And when my classmates tore the pictures down, laughing, jeering as they threw them into a nearby garbage can, I would go home, print them again, and carefully re-hang them in their rightful place.

The years following high school were spent discovering myself, but it was not until graduate school—where I had the good fortune to have a professor who was a big Monkees fan—that I re-discovered The Monkees.

With a more mature outlook and a new favorite Monkee (hello, Peter Tork), I began to re-watch the television show and listen to the Monkees’ music, and more than anything, wanted to connect with fellow fans, something I had been longing for since I could remember.

Even though I was thrilled to see the Monkees in concert for my 18th birthday in 2001 (in their “Threekees” combination of Micky, Peter, and Davy, but no Mike), I was still convinced that I was the only person my age who liked them.

But the Internet had progressed dramatically since then, and I was thrilled beyond measure to discover the Monkees “fandom”—a huge group of Monkees fans of all ages in various online communities, most notably on Facebook.

The Monkees were no longer touring as a group at the time, but they were performing as individuals, along with their respective bands. Being that Peter had shifted into the coveted “Favorite Monkee” spot somewhere before that 2001 show, it was he whose solo act I first sought out.

Another change that the passing years had brought was a driver’s license, which helped to facilitate my many concert adventures to come. It all began in the summer of 2009, when I traveled all the way to Connecticut and saw Peter with his cleverly-named band, Shoe Suede Blues, for the first time ever.

And though I did not know it then, at that show I crossed paths with the girl who would later become my best and dearest friend.

As I followed the band from show to show, names that I had seen online soon became familiar faces, and in several cases, developed into deep and meaningful friendships. In my younger years, the Internet was where I went to find friends in the first place; but now, I was using it to keep in touch with the people I met at these concerts who lived a considerable distance away from me.

Missteps were of course made, just as they were when I first began to make friends after high school. It’s entirely too easy to place one’s trust in the wrong people, and in 2009, a 12-year friendship with someone I’d had as a best friend since high school was falling apart. That coupled with my excitement over meeting new friends through the Monkees left me in a particularly vulnerable state, and I could not see that one of my new “friends” was harming me without my knowing it.

It was only through trial and a great deal of error that I finally was able to cast these unhealthy friendships aside, and to free myself from blame and the belief that I had done something wrong. To my everlasting gratefulness, however, in place of those came several of the most emotionally fulfilling and happy-making friendships I have ever had.

One such friendship that I had forged was with a woman who lived in England, but who came to the U.S. to attend one of the Peter Tork shows to which I frequently traveled. We’d spoken online previously, but it was at that show where we met face-to-face for the first time.

Six months later, this woman and I ended up starting a Monkees website together. We were both writers, and had met on a forum for writers and readers of Monkees fan fiction, and after the sudden disappearance of a very popular Monkees fan fiction website, came up with the idea to start our own.

In the summer of 2010, Naked Persimmon—named for the title of a song sung by Michael Nesmith in the Monkees’ 1969 television special, 33 1/3 Revolutions per Monkee—was born. Three years later, the site boasts a Fan Art section, an enormous photo gallery, a section of Monkees quotes and anecdotes, and has become one of the most popular Monkees websites on the Internet, complete with several social media sites that we use to stay connected with our fans.

When I think of that 14-year-old girl watching The Monkees on her television, I know for a fact that she never dreamed that she’d one day be running a website about them. I know that she thought she would always be alone in loving The Monkees, and that she would never find friends with whom she could share that love.

A few days ago, I got together and had dinner with two friends that I have made through The Monkees. We sat there chatting, telling stories, laughing; and our waitress remarked at what a good time we seemed to be having. In that moment, I felt my heart swell almost to bursting, simply because that moment was one I never imagined could be possible.

When I became a fan of the Monkees, they became a part of me.  Despite the initial disapproval of so many, I did not stop being a fan, or change who I was just to fit in. I waited, keeping them close to my heart in that special place that no one else could touch, and over time, finally found what I had been looking for.

The Monkees—Micky, Peter, and Davy—reunited in 2011, and I had the privilege of seeing them three times on their summer tour. I can remember sitting next to my best friend Lynsey in the arena at Mohegan Sun casino, and turning to her with a lump in my throat:

“I have always wanted this: To have a best friend to go see The Monkees with in concert. Right now, my inner 15-year-old is jumping for joy.”

//Oh, what can it mean…to a daydream believer and a homecoming queen…//

The Power of Advocacy

At this time of year with election day approaching it seems that everyone is advocating for something. Politicians are advocating their positions on key issues that affect their constituents.  Special interest groups are advocating for the politicians that represent their viewpoints. Business leaders are advocating for candidates that will enhance their prosperity while the underserved are advocating for more attention to their needs.  Opinions run rampant on social media like FACEBOOK and sometimes these opinions run those with opposing viewpoints out of town.

Everywhere one turns, whether tuning into television ( and not only the news show but entertainment shows too espouse political viewpoints) or getting one’s manicure or barbershop crew-cut, people everywhere are advocating their perspectives.  Yes, this is the American way, our first amendment right to free speech, and yes, we Americans hold this near and dear to our hearts and rightfully so!  It is powerful to advocate.

Why is advocacy so powerful?  First, on a primal level, advocacy allows us a vehicle by which to use our brains, formulate an opinion and then passionately share it.  I am not sure the amount of calories burned but perhaps someone has or will do a study as to whether constant advocacy leads to weight loss!  Anyhow, back on topic, it would seem that advocacy is a healthy form of discourse.  However, not always.

A childhood friend of mine was actually threatened and bullied by some other people from our childhood because of his political views that he shared on FACEBOOK.  They even threatened his mother!  This is a sad example of how advocacy can turn ugly and cruel.  There have also been recent instances that I have noticed advocacy envy where advocates who supposedly are working together for a cause, diminish and knit-pick the work that others are doing rather than celebrating the good intentions that create awareness.

In the world of Autism advocacy, many people living with Autism have difficulty with verbal communication (although they find other ways to get their point across for their needs and wants) so they are dependent on their peers who are more verbal, their parents and caregivers and professionals working in the field to express viewpoints.  The Daniel Jordan Fiddle Foundation is extremely proud to have been among the first national Autism organizations and to be the first one focused on adults, to have an Advocates Advisory Board. We have always relied on our Advocates to guide us in our program development and in all else that we do. The Advocates on our Advisory Board all live with the challenges of Autism and some have posted on this blog and others will in the future.  These advocates currently serving as The Daniel Jordan Fiddle Foundation adult self-advocate advisors are: Alex Bond, Stephen Daly, Amy Gravino, Susan Meyer, Jimmy Scancarella and T. Paul Voss. Each of these individuals has had opportunities to represent The Daniel Jordan Fiddle Foundation; for example at: advocacy events; in the media; in pieces they have written for our publications; and social media; and at conferences and round-table think tanks to name a few.

In addition, The Daniel Jordan Fiddle Foundation has proudly partnered with Autism organizations led by self advocates such as GRASP, ASAN and ARI and the programs, initiatives and awareness our partnerships have created are ones we take great pride in, especially because these affiliations and valued collaborations are driven by those who are on the front lines of Autism advocacy.  We are also very proud of the fact that these collaborations are serving the needs of the constituents that these organizations represent.

The power of advocacy is potent.  Even one voice can make a difference as we have often seen through history.  But the power of advocacy, like any other kind of power, must be cherished; and it should be used with careful consideration, respect, tolerance and positivity. Self-advocates should not be engaged as poster mannequins but as valued voices who drive the cause they represent. Groups working to achieve societal change and better lives should not vie against one another to be top-dog but rather support and respectfully disagree while mutually encouraging community engagement on the issues they care about. In these best case scenarios the power of advocacy is at its finest.Image

It Doesn’t Hurt to Be Bold…

Did you ever notice that some people are naturally outspoken? I sometimes watch in awe as these fearless folks wave their arm up to be recognized at public forums or at meetings and now even in social media. Although at times, we less outspoken souls roll our eyes or wince when the floodgates open, often it doesn’t hurt to be bold, and can actually be a good thing. Boldness can help define issues, boldness can give voice to the unspoken and boldness can help fulfill dreams.

Arianna Huffington who wrote,” On Becoming Fearless…in Love, Work and Life,” contends that we can be assertive without sacrificing charm and humor. I fully subscribe to the notion that it is all in the presentation—or at least a good deal is. Part of this is taking what we have to say seriously but not taking ourselves too seriously. And one other thing my grandmother taught me, and maybe yours taught too,” you get more flies with honey than you do with vinegar.”

When I think about the most effective and persuasive people I know, they share certain attributes that make them successfully and non-offensively bold. First, they know who they are and what they stand for: call this self-confidence or self-awareness or self-actualized—all are good descriptions. Next, they are not obnoxious or offensive, rather they express themselves without attacking in a calm way that engages. Another attribute these well-spoken speakers possess is their ability to get their point across in a way that is respectful of their audience without coming across superior or humorless. Finally, and maybe most importantly, they do not have to go on forever with their thoughts and skillfully state their case and sit down.

It doesn’t hurt to be bold when we have something we believe in, and we think it through before we speak. At times we do not express our thoughts for fear of being criticized or misunderstood and these are compelling reasons not to be bold. But to not speak and wish you had may have more dire and long lasting consequences. It doesn’t hurt to be bold but like in all things, be mindful of moderation.