Inaugurating A New Beginning

Thoughts on What We Must Do to Educate and Inform the Trump Administration about Autism Spectrum Disorder by Linda J. Walder, Founder and Executive Director of The Daniel Jordan Fiddle Foundation for Adult Autism

Today, January 20, 2017 was an historic new beginning for all Americans, and the world, as Donald J. Trump became the 45th President of the United States of America.What does this mean for individuals and families living with Autism Spectrum Disorder (ASD)? It is too early to know with certainty what will happen in the next four years, but based upon what we know so far, I offer these predictions and thoughts that hopefully inspire discussion and action:

  1. Donald Trump appears to be a devoted father and has very close relationships with all of his children. It would seem that he would also value the families of all Americans, and that he would recognize and address the challenges that many face, including those of individuals and families living with ASD;
  2. Donald Trump does not appear to know a great deal about ASD but that does not mean he does not want to learn about it, and how it affects individuals and families. It is our job as members of the community directly involved with ASD, as advocates, family members, scientists and professionals to educate the President and his administration about the needs and concerns of those affected by ASD;
  3. Donald Trump’s choice to lead the Department of Education seems to not embrace or understand how vital federal laws like IDEA are to our students challenged by ASD and that this is a law that enables families assurances that no matter where they live in the United States that their child will receive the best education possible commensurate with their needs.  By leaving this to the states to decide, it puts families in the position of having to move and uproot their lives to states that are more accepting of the IDEA,  and this is onerous on families.  Again, we must educate the Trump administration about protecting these rights in all states;
  4. Although Donald Trump has pledged to repeal and replace Obama Care this does not mean that treatments and medical needs of autistic individuals will be unavailable or that insurance rights will be repealed.  It has and is already up to each state to accept the federal right to receive  insurance coverage on behavioral therapies and other medical needs and that should not change in the Trump administration and families should still be able to save for medical expenses in Health Savings Accounts;
  5. The impact or lack of impact of vaccines on autism has been brought up by candidate Trump and other advocacy groups lately and will most likely be a renewed topic of inquiry and discussion in  the new administration.  Although the CDC’s current position is that there is no connection between vaccinations and autism, I do not see any harm in revisiting the inquiries on this topic while at the same time recommending to parents to pursue a safe vaccination schedule  with their child’s doctors;
  6. The lifelong needs of individuals diagnosed with ASD affect directly over a million Americans, and our entire society at large.  We need the United States government to continue to support the development of housing, employment, medical care, educational and recreational options for the diversely challenged population diagnosed with ASD and President Trump must be made aware of the hopes, challenges and needs of these individuals and families.

We should not look at today’s inauguration of a new President as a negative that will revoke the gains we have made or foreclose future ones.  Rather, we should further solidify our resolve that all people diagnosed with ASD are entitled to be valued and supported as needed throughout their lives.  We do this as an autism community and community at large through advocacy, educating our new leaders, and by highlighting and publicizing positive examples that put a spotlight on how we successfully address the challenges we face to achieve the best lives possible for all. Now is not the time for despondency, rather we must roll up our sleeves and get to work with steadfast hope that our effective enlightenment of the Trump administration will lead to better days ahead.

 

 

 

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