Severe Autism Awareness: An Interview with Isaac

April is Autism Awareness Month. 

Severe autism takes many forms, but lets be honest, it makes many people uncomfortable. It is not well understood by the general public. Even families that have been living with severe autism for decades and can tell you exactly how it affects their family member, are almost as clueless as everyone else as to its cause and how to treat it effectively. Sometimes there is a reluctance to speak about it because it contradicts the rosy picture that is painted by advocates for people with autism who are not intellectually disabled and have average or above average abilities. It is as if using the autism label for people who are not performing at this level will reflect badly on people who are. 

In this video, Irene Tanzman introduces her son. She projects their affection for each other, but without needing to wear rose-colored glasses to see severe autism clearly.

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An Interview with Isaac, Diagnosed with Severe Autism

Apr 1, 2022

Irene Tanzman

This is my interview with my son, Isaac, an adult diagnosed with severe autism. I filmed this video in April 2022, Autism Awareness Month. Most often, the autism you hear about is not the type of autism that my son and many others have. It seems to me that Autism Awareness for this type of autism seems at its lowest point since my son was diagnosed. The kind of autism that the public is aware of is not the autism that Isaac has. Individuals like Isaac need quality disability specific programming and instruction to lead productive and fulfilling lives. They need therapies such as behavioral, speech, and occupational therapies. This type of help is nearly impossible to obtain. While Isaac is quite loveable and endearing, the idea that he will work in competitive employment is not realistic. He needs the type of services that the National Council on Severe Autism advocates for. Please be aware that this type of autism exists, and that people like this need help and services. Thank you for watching my video.

Visit my website at: https://irenetanzman.com/ . 

Follow me on Twitter: https://twitter.com/itanzman . 

Visit the National Council on Severe Autism: https://www.ncsautism.org/

Abelone Kelley April 06, 2022 0

ACT Now for Severe Autism Campaign from Together For Choice

  

 Organizations supporting Act Now for Severe Autism: Voice Of Reason (VOR), National Council on Severe Autism (NCSA), ICF Advocates for Choice, Together For Choice (TFC), Autism Science Foundation (ASF), EASI Foundation, The Council of Autism Service Providers (CASP), RCPA

 

Group Warns of Escalating Health and Safety Crisis in I/DD Community

Releases Video to Increase Awareness

Calls to End One-Size-Fits-All Policy Solutions

[This video is extremely hard to watch, but it is real. I have known many families who have gone through this special kind of Hell. Not only do they face a daily struggle to keep their child safe from self-inflicted injuries, but they do it with minimal outside help and sometimes no sleep or any other form of relief. They are shamed and blamed by some disability rights organizations for somehow causing their child's disabilities. Rather than recognizing how extreme and different children and adults with severe autism can be from others with forms of autism that are not as debilitating, the neurodiversity movement  treats them as an embarrassment. People with severe autism belie the claim by some disability rights advocates that severe autism does not exist and that no special consideration is warranted.]

More from Together For Choice:

Together for Choice Joins with RCPA, Parents to Launch ACT Now for Severe Autism Campaign

Harrisburg, Pennsylvania – Together for Choice, a national advocacy organization formed to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD), today announced the ACT NOW for Severe Autism Campaign with a consortium of partners, including the Rehabilitation and Community Providers Association (RCPA), concerned parents and other advocates. The campaign seeks to shine light on the growing health and safety crisis involving individuals with severe autism and change policies that deprive them of the services they need.

“For too long, individuals with severe autism have remained in the shadows and all too-often forgotten in policy discussions,” said Ashley Kim Weiss, National Coordinator of Together for Choice. “Most of the attention and resources have been devoted to integrating high functioning members of the I/DD community into society, which we agree is important. Equally important, however, are the most vulnerable individuals with severe disabilities who can never fully integrate and are in desperate need of customized care and support to live healthy and productive lives.

The group promoted a video, which first debuted at the RCPA Conference held in Pennsylvania last week. A parent of a severely autistic child self-financed and produced the video to combat the increasing claims of the highly vocal and publicly visible advocates of the neurodiversity community, that severe autism does not exist. Or worse yet, that the needs of those individuals with severe autism are no different than the needs of any other individual diagnosed with autism.

“While the video is at times uncomfortable to watch, it is critical that the public see the realities that these individuals and families face on a daily basis,” said Richard S. Edley, President and CEO of RCPA. “We need more resources and more flexible policy solutions to address this growing crisis. One-size-fits-all solutions must end. We must recognize that one-size does not fit everyone. People will always be left out – and sadly, it is often the most vulnerable who are forgotten."

The group also launched a website at http://actnowforsevereautism.com/ which houses the video and contains a petition to end these policies as well as more information about how the public can get involved and advocate for change in policies that discriminate against individuals with severe autism and their families.

About Together for Choice

Together for Choice (TFC) is a non-profit organization with a mission to unite to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD) to live, work and thrive in a community or setting of their choice. Please visit www.togetherforchoice.org for more information.

About the Rehabilitation and Community Providers Association:

With well over 350 members, the majority of who serve over 1 million Pennsylvanians annually, Rehabilitation and Community Providers Association (RCPA) is among the largest and most diverse state health and human services trade associations in the nation. RCPA advocates for those in need, works to advance effective state and federal public policies, serves as a forum for the exchange of information and experience, and provides professional support to members. RCPA provider members offer mental health, drug and alcohol, intellectual and developmental disabilities, children’s, brain injury, medical rehabilitation, and physical disabilities and aging services, through all settings and levels of care. Visit www.paproviders.org for more information.

Contact for TFC:

Ashley Kim Weiss, National Coordinator

ashley@togetherforchoice.org

Contact for RCPA:

Richard S. Edley, PhD, President and CEO Rehabilitation and Community Providers Association (RCPA)

redley@paproviders.org

Abelone Kelley October 06, 2021 0

Call to dismantle barriers to developing autism friendly affordable housing

When more than three or four people with disabilities live together, either out of friendship or to share resources with people with common interests and needs, some disability rights advocates condemn the practice and compare it to life in institutions of more than fifty years ago. Whether it is a group home or a larger intentional community or a publicly or privately operated facility, they are all bad according to these advocates.

Touring a 21-unit disability housing complex in Gilroy, CA, Jill Escher describes how congregate housing for people with autism and other development disabilities are needed to tackle the problem of serving and housing people with severe disabilities. 

Encouraging these projects is better than attempting to sabotage them in the name of disability rights. 

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I visited a 21-unit disability housing complex and it was nothing remotely like an "institution"

A disability housing advocate calls for the dismantling of bureaucratic obstacles preventing the development of autism-friendly affordable housing.

by Jill Escher
8/31/21 

One of the most ludicrous and damaging battles waged by so-called “disability rights” activists is their deranged crusade to de-fund congregate-style residential facilities, which they routinely likened to “institutions” of old that once housed 1000’s of residents. It is of course nonsense, but this line of absurdist reasoning has already had a damaging chilling effect on needed developments aimed at the intensive needs of the autistic and developmentally disabled. Any development with more than a handful of disabled residents can become the target of immediate witch-hunt-like suspicion, and as a consequence, many projects die before they can get off paper.

This insane self-sabotage came to mind as I recently toured a lovely 20 year-old housing development in Gilroy, California, located some 30 miles south of the Silicon Valley area. Villa Esperanza was built in the late 1990s when it was still totally cool, and indeed noble!, to say, “We are creating housing for the developmentally disabled.” This was before groups like the Autistic Self Advocacy Network and others routinely hurled poisonous accusations at such developments calling them “isolating” and “institutional.”

The primary goal of Villa Esperanza, created by a nonprofit housing developer, was the provision of affordable housing for adult developmentally disabled individuals and their families. It received a construction loan (Section 811) from HUD and smaller loans as well. Other local nonprofits were involved in the planning, and now the administration. For the past two decades it has provided 21 units of desperately needed housing at affordable rates. The person with DD pays a portion of the rent (perhaps about $300, representing 1/3 of their SSI income), while the balance is paid by the county Housing Authority with HUD funds. Some tenants live independently, some with roommates, some with professional supports chosen by the client. Most tenants access the community on a regular basis and attend supported employment or day programs. The mini-campus also features a community room for social gatherings. 

As I toured the grounds I could only think, “Given the skyrocketing rates of autism, why are there not Villa Esperanzas everywhere? Why isn’t this model — a public-private partnership providing affordable, subsidized units to DD adults in a safe, serene setting — a go-to norm for our population?” ...

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Read More at the Blog for the National Council on Severe Autism (NCSA)

Abelone Kelley October 04, 2021 0

National Council on Severe Autism 2021 Webinar Program

The National Council on Severe Autism (NCSA) is sponsoring a free webinar series. My sons are not autistic - they have profound intellectual and developmental disabilities (I/DD). There are many similarities, however, that families like mine have with NCSA families and the topics covered should be of interest to a broader audience. For instance, yesterday's (3/25/21) Webinar, the NCSA policy summit, included an hour long discussion with Melissa Harris from the federal Centers for Medicare and Medicaid services who clarified aspects of the Home and Community-Based Settings Rule that have been misinterpreted. The rule is not nearly as restrictive as to what settings are acceptable to receive HCBS funding as many advocacy groups promoting "full inclusion" would have us believe.

Past Webinars are posted to the NCSA website.

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February 19, 2021

What’s Wrong with Facilitated Communication?

Please access the free video recording here.

Featuring:

Ralf Schlosser, PhD, Professor in Communication Sciences and Disorders, Northeastern University

Howard Shane, PhD, Director, Autism Language Program, Department of Otolaryngology and Communication Enhancement, Boston Children’s Hospital

James Todd, PhD, Professor of Psychology, Eastern Michigan University

Janyce Boynton, former FC practitioner and educator and advocate for evidence-based practices in the field of communication sciences

Thursday, March 25, 2021 https://www.ncsautism.org/policy-summit

NCSA Policy Summit 

See event page here. Watch the video recording here.

Thursday, April 29, 2021

10:00-noon, Pacific / 1:00-3:00pm Eastern

Treating Challenging or Dangerous Behaviors, Part 1: Medical Support

See event page here

Featuring:

Carmen Lopez-Arvizu, MD, Child and Adolescent Psychiatrist, Kennedy Krieger Institute

Lee Elizabeth Wachtel, MD, Director, Neurobehavioral Unit, Kennedy Krieger Institute 

Robert Hendren, DO, Professor of Psychiatry and Behavioral Science, UCSF

We will reserve ample time for live Q&A

Thursday, May 27, 2021 

10:00-noon, Pacific / 1:00-3:00pm Eastern

Treating Challenging or Dangerous Behaviors, Part 2: Insurance Coverage for Treatment for Severe Behaviors at Any Age

See event page here

Featuring:

Lorri Unumb, Chief Executive Officer, The Council of Autism Service Providers 

Judith Ursitti, Vice President of Community Affairs, The Council of Autism Service Providers

Arzu Forough, Executive Director, Washington Autism Alliance and Advocacy

Karen Fessel, Executive Director, Mental Health and Autism Insurance Project

We will reserve ample time for live Q&A

Thursday, June 24, 2021

10:00-noon Pacific / 1:00-3:00pm Eastern

Treating Challenging or Dangerous Behaviors, Part 3: Behavioral and Sensory Support   

See event page here

Featuring:

Kelly Bermingham, MA, BCBA, People’s Care Behavioral Health

Robing Steinberg-Epstein, MD, Developmental and Behavior Pediatrician, UCI

John Guercio, PhD, BCBA-D, CBIST

Erik Jacobson, Ph.D, Chief Psychologist, Upstate Cerebal Palsy

Steve Perez, MA, BCBA, Chief Clinical Officer, People’s Care Person Centered Behavioral Health

We will reserve ample time for live Q&A

July 2021

Training for Direct Support Personnel

August 2021

Accessing Appropriate School Settings and Transition Programs

September 2021

Autism Family Emergency Preparedness: Introducing the September 26th Project

Thursday, October 28, 2021

10.00am Pacific / 1.00pm Eastern

Realistic Housing Options for Adults with Severe Autism: An Update

Featuring:

Desiree Kameka, Autism Housing Network

November 2021

Coping with Family Trauma

December 2021

The Crisis in Crisis Care

Abelone Kelley March 26, 2021 0

A founder of the National Council on Severe Autism perishes in an accidental house fire

I have been a follower and admirer of the people who founded  the National Council on Severe Autism  in May 2018. One of their founders, Feda Almaliti, died Saturday in a house fire with her beloved son Mu. This is a tribute to her and her son from her NCSA family.

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On the Passing of Feda Almaliti, 1977-2020

September 27, 2020

Yesterday was a day that rocked the autism community. Feda Almaliti, one of the founders of the National Council on Severe Autism and who was recognized nationally for her outspoken and often brash and hilarious advocacy for individuals and families impacted by autism, perished in an accidental house fire with her beloved son Muhammed. Feda was able to run out of the house along with her sister and niece but then went back in to bring out Mu. She could not carry him but kept fighting till she lost her breath due to heavy smoke. When the fire officials found the bodies, Feda was holding Muhammed.

Our hearts are broken....

...When we heard she had died trying to save Mu, a friend remarked, “Of course she did, she would not have been able to live with herself otherwise.”

Read the full post here.

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See also, Ways to Honor the Late Feda Almaliti and Her Son Muhammed

The NCSA Blog is full of posts that describe the hope and despair of severe autism and give voice to people who have been underrepresented and misrepresented by people presuming to speak for them.

Abelone Kelley September 29, 2020 0

13-year old autistic boy shot by police in Salt Lake City

This is easier to read about than to watch. If you prefer to read about it, this is an article from The Guardian:

"Police shoot 13-year-old boy with autism several times after mother calls for help"
by Kenya Evelyn, 9/8/20

 

Abelone Kelley September 09, 2020 0

Troubled times: law enforcement, severe mental illness, and other disabilities

Susan Werner - Did Trouble Me on YouTube

As we experience the Covid-19 pandemic, political unrest, and economic uncertainty, we frequently hear the expression “During these troubled times…” or something equivalent. Whether it is used in an ad for anti-anxiety medication or to promote a candidate in a seemingly distant election, many people with severe mental illness and those with severe intellectual and developmental disabilities (IDD) and their families experience “troubled times” as the norm. Untroubled times are a welcome relief, while waiting for troubles that may be just around the corner. 

In the recent Black Lives Matter upheavals following the horrific video-recorded killing of George Floyd in Minneapolis, a demand to “Defund the Police” has been pushed to the forefront of news coverage. There are varying interpretations of what this means. However one interprets the phrase, there is a lot to be gained from examining the role of law enforcement in the lives of people with mental illness and other disabilities, the allocation of taxpayer funds in this regard, and whether there are more effective ways to use the money that might produce better results for everyone concerned. Police departments, like public schools, are often called on to solve societal problems that they have no control over, such as poverty, the lack of medical and mental health care, and homelessness. The neglect of these problems through years of de-funding programs that might have shored-up our system of care and services to people with with mental illness and intellectual and developmental disabilities (IDD), has led to law enforcement taking on responsibility for problems where others have failed to have an impact. It is hard to believe that most police officers want this responsibility, nor are they very good at solving these types of societal problems.

Severe mental illness often leads to police involvement when a person with untreated mental illness is perceived as acting irrationally or in a threatening manner toward others. People with severe IDD and their families experience similar situations to that of people with severe mental illness and their families. [See "Michigan’s mental health system is failing many with severe autism", 5/16/19 from The DD News Blog for some examples.]

The Treatment Advocacy Center (“Eliminating barriers to the Treatment of Mental Illness”), distributes a Research Weekly that recently looked at the “Role of Law Enforcement in Mental Illness Crisis Response". Its recommendations show how shifting funding from law enforcement to better care and treatment for people with severe mental illness would relieve law enforcement of taking on responsibilities better left to the mental health system and divert people who are unnecessarily forced into the criminal justice system into more appropriate and effective treatment.

Here are excerpts from from the Research Weekly: "Role of Law Enforcement in Mental Illness Crisis Response":
“The Treatment Advocacy Center has been calling attention to the need to transform law enforcement’s role in communities for more than 20 years, starting with the work of our founder Dr. E. Fuller Torrey. Our research expertise includes the role of law enforcement in mental illness crisis response and how people with severe mental illness are overrepresented in the criminal justice system.

"What follows is a compilation of data and information on these important topics: ..”
...
"Approximately one in four fatal police encounters involve an individual with severe mental illness, according to our 2015 report, Overlooked in the Undercounted. This means that people with mental illness are 16 times more likely to be shot and killed by police, compared to people without mental illness. Reducing the disproportionate volume of contacts between law enforcement officers and people with severe mental illness is the single most immediate, practical strategy to reduce fatal police encounters for individuals with mental illness. Furthermore, there is currently no national government database collecting information regarding arrest-related deaths, let alone the role of mental illness or race disparities in these encounters."

...
"The role of law enforcement in mental illness crisis response is an enormous portion of department resources and budgets. Responding to and transporting individuals with mental illness occupies more than one-fifth of law enforcement officers’ time, according to our 2019 report, Road Runners . This outsized role is a result of the overrepresentation of people with mental illness within the criminal justice system, the length of time mental health crisis service calls take, the long distances law enforcement must travel to find available mental health resources and the time officers must wait while transporting individuals in crisis to an emergency department."

...

"The lack of appropriate mental health treatment services in the community was the most prominent factor contributing to law enforcements’ outsized role in mental health crisis response, according to a thematic qualitative analysis of our 2019 law enforcement department survey results . Survey respondents felt that many of the time and resource issues surrounding psychiatric transports are due to an inadequate supply of beds in the community for individuals to receive treatment. As with any other illness, severe psychiatric diseases have a variable illness course, with waxing and waning symptomology and resulting needs for the individual suffering. Therefore, a full continuum of psychiatric care, including outpatient, crisis, and acute care, as well as longer-term and residential-type beds, is needed for a functioning psychiatric system. Few communities in the United States have such a robust mental health care system in place."
...

"As municipalities continue to examine the role law enforcement plays in our society, these data and resources can serve to inform evidence-based policy decisions.

Elizabeth Sinclair Hancq
Director of Research
Treatment Advocacy Center

Abelone Kelley June 30, 2020 0

Parenting a child with severe autism during a pandemic

This is an NPR interview with Feda Almaliti, the mother of a 15-year-old son with severe autism. Feda is also the Vice President of the National Council on Severe Autism and has written articles for the NCSA Blog and the Autism Society San Francisco Bay :

'He's Incredibly Confused': Parenting A Child With Autism During The Pandemic  

May 22, 2020
Heard on All Things Considered 
by Courtney Dorning and Mary Louise Kelly 

Here are some excerpts from the interview: 

"'Muhammed is an energetic, loving boy who doesn't understand what's going on right now. He doesn't understand why he can't go to school. And school is one of his favorite places to go. He doesn't understand why he can't go take a walk in the mall when that was one his favorite things to do. He doesn't know why he can't go to the park, why he can't go down to the grocery store,' Almaliti says. 'So he's incredibly confused, in this time when we're all confused, but he really doesn't understand it.'"
 
..."It's the unknowing. ... We don't know when it's going to end. We don't know what's going on, and to deal with autism at home makes it even harder. The only support that I get to get through it is through fellow autism parents. We have Zoom calls, and we try to find humor in this thing. ... We're just trying to lean on each other to get through. Because I can't do it alone. Nobody can."...

"...I almost feel like nobody hears us. Because my son doesn't really talk. He doesn't talk. And I'm supposed to be his voice. And no one's listening to what's going on for our families. You know, no one gets that we are just as vulnerable as coronavirus people. The coronavirus is going to come and go. Autism is here to stay." ...

..."We desperately need extra help to get through this. And I firmly believe that autism support workers, aides, their teachers and caregivers are as essential as nurses and doctors and should be given the same accommodations. People don't understand that for our families, caregivers are our first responders. Special needs schools are our hospitals. Our teachers are our ventilators. And we can't do this without them."

More articles by Feda Almaliti:

Three Strikes... and He's Out?
May 23, 2020 [Reprinted from a 2018 blogpost at Autism Society San Francisco Bay Area]

What happens when the regular world has had enough of my son's autism 
..."Inclusion is a hot topic in disability circles, but when our kids can’t play by society’s rules, inclusion can truly suck. Instead of some fantasy of joyful acceptance, we get black-listed. Over and over and over. How I dream of places, spaces and programs fully accepting of our special children. Autism-friendly rules, not 'If you act autistic you’re out' rules."

"...At Autism Society San Francisco Bay Area’s Summer Pool Parties we make sure an autistic kid can be him or herself. Where they can chew on pool noodles, bellow and flop around, and no one judges them. So here we are, me in the burkini and Mu in his element. A place, however small, where everyone with autism belongs... on the VIP List. If only the rest of the world were so accommodating."

Inclusion Sucks. Or, Why My Son with Severe Autism Has Nowhere to Swim this Summer 
May 22, 2020

"An autism mom stuck at home with her son on a hot summer day meditates on the smallness of his world when inclusion is the only option. ...Of course my pool predicament is a microcosm of a bigger problem: disability-friendly day programs, jobs, housing, and therapeutic care—vital lifelines for parts of our population—are at risk given the direction of federal policy. The trendy mantra is 'community integration' while options for the severely disabled slowly disappear into the black hole of red tape and de-funding."...

..."They say, 'Why maintain an autism day program when Joe could just go to the local Y?' or 'Why have sheltered workshops when Sam can get a competitive job at Safeway?' Please tell me, what are these people smoking and in which smoking lounge can I find them? Have they ever tried caregiving for someone like my son?

"So let's make a deal. Let's ensure inclusion and integration for all those who want it. And let's support acceptance of all, including acceptance of alternative options for the Muhammeds of our world. Don't let narrow ideology throw our babies out with the bath, or, er, pool water. It's just common sense. In the meantime if you'll invite us over for a swim, we'd appreciate it."

Abelone Kelley May 27, 2020 0

From the Interagency Autism Coordinating Committee on Autism Housing Needs, 7/23/19

This is from an account of the Interagency Autism Coordinating Committee meeting on 7/23/19 by Jill Escher: 

Susan Jennings, founder of Keeping Individuals with Intellectual Disability Safe (KIIDS) shared an oral public comment that her son is one of those who kicks down doors and elopes into traffic. He has been discharged from six different group homes, as none could manage his challenging behaviors. She cited systemic shortcomings to community group home, including severe abuse and toxic over-medication. His salvation was an ICF, and she laughed at the idea of “forced institutionalization” since “You can’t force your way” into an ICF since “they are closed or closing.”

She said her son is far from an anomaly. About 40% of the autism population exhibits severe challenging behavior. Because of the lack of options, these adults often languish in psychiatric facilities, hospitals, or jails. The Olmstead Supreme Court decision recognizes that the ADA does not impel states to close institutions, and indeed that some individuals may need these setting for crisis periods or permanently. They must remain available, as they offer a superior form of care for a segment of the population, she said. There are very high costs to keep some adults “in the community” with too little assistance and supervision. “The state center is a bargain compared to the community,” and also provides her son a much greater degree of personal freedom. Also, unlike community settings, ICFs must meet rigorous standards to be certified. She drew attention to the direct service provider (DSP) shortage: “You are asking people to handle life-and-death emergencies at fast-food wages.” Finally she denounced the “cruel movement afoot” to defund out-of-home options. If parents do not have the ability to care for severely affected adults — who does? We must offer a full range of services.

Abelone Kelley July 27, 2019 0

IACC Workshop: Addressing the Housing Needs of People with Autism, 7/23/19

The Interagency Autism Coordinating Committee (IACC) is holding a workshop to address the housing needs of people on the autism spectrum on 7/23/19:

Tuesday, July 23, 2019

Hilton Washington DC/Rockville Hotel and Executive Meeting Center 

1750 Rockville Pike 

Plaza Ballroom 

Rockville, MD 20852 

9:30 to 4:30 pm

“The purpose of the 2019 IACC Workshop, Addressing the Housing Needs of People on the Autism Spectrum, is to convene a working group of the IACC that will focus on housing needs of people on the autism spectrum. The workshop will be open to the public, will include time for public comments, and will be accessible by live webcast and conference call. "

Remote Access:

Conference Call:
Dial: 888-946-9416
Access code: 1391703 (listen only)

Webcast: https://videocast.nih.gov/summary.asp?live=33279&bhcp=1 

It is too late to submit a request to make oral or written comments to the committee during the 7/23 meeting, but truth be told, any member of the public can submit comments in writing to the IACC at any time. You can also listen in by phone or webcast.

Contact information:

Ms. Angelice Mitrakas
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 7218
Rockville, Maryland 20852
Phone: 301-435-9269
E-mail: IACCPublicInquiries@mail.nih.gov

Full Agenda for IACC Workshop, 7/23/19

Partial agenda that will include discussion of Intentional Community models:

Overview of Housing Issues

10:00 Status and Trends in Supports and Services from the Residential Information Systems Project
Heidi Eschenbacher, Ph.D.
Researcher, Institute on Community Integration, University of Minnesota

10:15  Trends and Insights from the Autism Housing Network
Desiree Kameka, M.T.S.
Director of Community Education & Advocacy, Madison House Autism Foundation 

10:30  Discussion of Public Comments

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC

Oni Celestin, Ph.D.
Science Policy Analyst, Office of Autism Research Coordination, NIMH

Intentional Community Models

1:00 Live. Learn. Lead. We’re the place for that…First Place AZ
Denise Resnik
CEO and Co-Founder, DRA Collective, Phoenix, Arizona

1:10 Benjamin’s Hope: a "Live, Learn, Play, Worship" Community Where People with Autism Enjoy Lives of Dignity and Purpose
Krista Mason
Executive Director, Benjamin’s Hope, Holland, Michigan


1:20  From House to Home: Thriving with Autism at The Center for Discovery
Terry Hamlin, Ed.D.
Associate Executive Director, Center for Discovery, Harris, New York


1:30 Organizing for Inclusive Community: Leveraging Partners and Policies to Make More Possible
Lindsay Johnson
Director of Policy and Partnerships, The Kelsey

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"The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The committee reconvened in November 2015 to begin a new session under the Autism CARES Act."

Abelone Kelley July 19, 2019 0

U.N. World Autism Awareness Day 2017 reveals hostility to families caring for people with severe autism

In a new blogpost from the National Council on Severe Autism (NCSA), "Autism Fantasies v. Autism Realities at the United Nations", 2/13/19, Lisa McCauley Parles discusses her experience speaking on behalf of her autistic son and others like him at the 2017 U.N. Autism Awareness Day:

"Two years ago, when I was asked to speak at The United Nations for World Autism Awareness Day I was honored. When I saw that the topic was 'The Road to Independent Living,' I wondered if the organizers were familiar with my work focusing on individuals with severe autism. But after I was told they were looking for a variety of perspectives, I eagerly accepted the invitation. As I sat in the great hall listening to other speakers I was surprised, saddened and then truly angered. 

"Though I have worked in the area of autism advocacy for decades, I had never encountered such direct hostility toward families and guardians struggling to help and protect their severely disabled loved ones...

"As parents were portrayed as controlling enslavers my anger grew. When a speaker proclaimed that guardianship is 'the equivalent of slavery and genital mutilation' it boiled over. On that day at the U.N. I was overwhelmed by the intense need to tell our stories, to organize families, researchers, providers and others and to bring facts and reality forward."

..."World Autism Awareness Day is this Tuesday, April 2, 2019. Will the public and world leaders again be fed a narrative that ignores our population with severe autism and vilifies parents? Let's hope not. The launch of the NCSA is a critical step towards effective advocacy for the needs of individuals with severe autism and their families. For more information, see ncsautism.org."

Lisa McCauley Parles is an attorney based in New Jersey. She is a member of the board of NCSA.

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See also "Parent-Blaming and Autism: Tragically Trending Again", by Jonathan Mitchell, 2/7/19

Abelone Kelley February 13, 2019 0

New Organization on Severe Autism

Autism is not one of the disabilities that my two adult sons have had to deal with. My awareness of autism goes back to the late 1970’s and the struggle to get schools to fulfill their obligation to make available a “Free and Appropriate Public Education” (FAPE) to every disabled child. Autism was not an official category defined by federal regulations at the time, but most children with autism fit under one or another of the categories listed and because of their disabilities needed special education. 

I knew families whose children had been diagnosed with autism and other related disabilities that would fit the definition of autism as it is now understood. The difference is that forty years ago, I never heard anyone talk about “high-functioning” autism or any of its milder forms. The manifestation of the disability was almost always severe and was often combined with intellectual disability, severe language impairment, and behaviors that interfered with education in regular classrooms and sometimes caused self-injuries or injury to other family members.

As a non-expert, I do not pretend to know enough to explain the explosion in autism diagnosis, but cases of severe autism have not abated. The needs of this population are growing, especially with the aging of family caregivers and the tendency for some advocacy groups to turn their backs on people with the most severe disabilities in favor of presenting an optimistic and more palatable image to the public and policy makers. If I had to rely on presenting a “positive” image of my children now and in the future to justify spending on services for them, I would be sabotaging the prospect of them receiving services that are both appropriate to their needs and effective in preventing harm.

A new organization called the National Council on Severe Autism (NCSA) has been launched “Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.” 

This from a press release on 1/10/19:

“…The new organization is created to address pragmatically the many serious challenges in services, housing, and policy facing families, caregivers and individuals affected by severe forms of autism and related disorders.

“‘Autism is often romanticized and sugar-coated in the media and social media,’ said Jill Escher, NCSA President. ‘In contrast, our efforts will be guided by pragmatic realities. For countless families devoted to the well being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak. We will work to increase capacity and a range of new options for this population.’….”

The organization has gotten off to a good start with a Website that presents their reason for being, policy statements, and an active blog .

From the NCSA blog:

If you wish to Share your story, the NCSA wants to hear from you:

Please share with us your story and concerns, and also your ideas about how to improve the lives and prospects for all those affected by severe forms of autism and related disorders. Topics may include, for example:

• Housing and long-term supports
• Education and training
• Day programs and employment
• Medical care and therapeutics
• Behavioral crisis and crisis care
• Financial issues
• Autism research
• Individual, parent and family well-being

Your information will help inform NCSA’s efforts, and will be kept confidential. If follow-up information is needed, we will contact you. Thank you for your generous assistance and time...

Amy Lutz, a parent of an adult with severe autism, writes about the organization on the Inspectrum blog from Psychology Today: "National Council on Severe Autism (NCSA) Launches; New organization will advocate 'for those who cannot speak for themselves.'", 1/14/19.

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For more information: 

Website: ncsautism.org
Email: info@ncsautism.org
Facebook: https://www.facebook.com/ncsautism/
Twitter: @ncsautismorg

Mail:

National Council on Severe Autism
PO Box 26853
San Jose, CA 95159-6853

Abelone Kelley January 16, 2019 0