Resource Guide for parents and guardians of people with I/DD and Autism

 

 

 
[This appeared as a blog post for the National Council on Severe Autism on 10/30/23]
 

By Harris Capps

I know it can be difficult for parents and caregivers to understand and navigate the disability care system in the U.S. I myself have a grown son with intellectual and developmental disability (I/DD) and have learned a lot over the decades, the hard way. Now I want to make it easier for others.

That’s why I wrote the short book, “Essential Lexicon and Resource Guide.” It’s intended for parents, guardians, caregivers, advocacy and support groups, policymakers, educators, students, healthcare professionals, researchers, social workers and others who want a deeper understanding of our I/DD system in an easy-to-access format. It may be of interest to the reader that there are 21 entries that also provide an “Author’s Reflection” on terms such as “Deinstitutionalization,” “The Olmstead Decision,” and “Supported Decision Making,” as well as on NCSA’s own podcast, Autism Confidential.

The book provides an overview of several areas: I/DD terms, the functions of I/DD government organizations, I/DD non-profit organizations that can help, I/DD-relevant websites, and key books on intellectual and developmental disabilities.

The I/DD Terms section covers a wide range of topics including savings accounts exempt from Supplemental Social Security (SSI) income, autism spectrum disorder, deinstitutionalization, IEP vs. IEPs, self-determination, supported decision making, waiver programs, and Home and Community Based Services (HCBS). The section provides explanations of each term to help readers better understand the complex world of I/DD.

The IDD Government Organizations section provides an A-to-Z guide to the federal agency responsible for I/DD policy. It also includes information on the network of University Centers of Excellence on Disabilities and the 10 resources of the Center for Parent Information & Resources.

The I/DD Non-Profit Organizations section includes important I/DD organizations such as autism organizations as well as the 40-year-old organization advocating for a full continuum of care.

The I/DD Relevant Websites section includes a range of websites that are relevant to individuals with IDD. These include websites that support people with “difficult behaviors,” a searchable index of government agencies, the blog hosted by the National Council on Severe Autism, and even the Disability History Museum.

Finally, the Key Books on I/DD section includes books such as Amy Lutz’s “Chasing the Intact Mind,” (October 2023), the main diagnostic Manual on Mental Disorders, and The Handbook of High-Risk Challenging Behaviors in People with ID.

In conclusion, this reference guide is a resource for anyone looking to deepen their knowledge of the I/DD landscape, from complex terminology to information on government organizations and key commentary.

The book is available on Amazon here.

Harris Capps is a parent, guardian, and advocate for his 47-year-old son, Matthew. Matt resides in an Intermediate Care Facility (ICF). Harris and his family live in Ohio.

September 26th Project Video 2023 from the National Council on Severe Autism

 

From the National Council on Severe Autism: Every year, around September 26th, we provide reminders, inspiration and information to autism and special needs families about emergency preparedness, in honor of the late Feda and Muhammed Almaliti, who perished in a tragic house fire on September 26, 2020. This year's video focuses on the story of Denise Lombardi, an autism mom in upstate New York who felt a call to take action and become a firefighter herself. We hope all autism families will take just 10 minutes every September to consider what steps, even very small steps, they can take to be prevent disaster. Our website -- September26.org -- offers checklists, and our videos, social media, podcasts and webinar offer ideas and help. Sponsored by the National Council on Severe Autism NCSAutism.org.

 

Autism Confidential: a podcast from the National Council on Severe Autism

The National Council on Severe Autism sponsors a mostly weekly podcast that is available from the usual Podcast platforms and on Youtube.

I do not have a family member with autism. My two sons, Danny, who died last year at the age of 46, and Ian, who is 38 years old, experienced profound intellectual and severe physical disabilities from birth. My cohort of parents and other family members who care for people with profound intellectual and developmental disabilities are not exactly in the same club with these autism parents, but we are just down the hall, with many overlapping issues and similar concerns about the romanticizing of disability, the inability of many advocates to acknowledge the severity of the most profoundly disabled people, and a tendency to blame parents for making people with disabilities look bad because parents insist on speaking truthfully about their own children.

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From the NCSA website:

"Welcome to Autism Confidential, the podcast from the National Council on Severe Autism. We shine a light on the hottest issues in the world of autism, including topics often shunned by conventional media. Who cares for autistic adults after their parents die? How can we fix our broken care system? What interventions help, or hurt? Join hosts Jill Escher, Amy Lutz and others from NCSA as they take on the hardest questions of autism with leading thinkers and doers."

Find it on Apple here
Find it on Spotify here
Find it (with video) on YouTube here

Have ideas for episodes or speakers? Please email us
 at NCSA Admin <info@ncsautism.org>

Interested in becoming a sponsor? Please email us at NCSA Admin <info@ncsautism.org>

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Jill Escher is a podcast host with just the right combination of personal experience (two of her children have profound non-verbal autism) and technical expertise to offer engaging weekly interviews on a variety of topics with family members and experts in the autism world.

For a description of Jill Escher’s busy life, see her webpage. 

Part of what she does is promote and fund research “on the genetic toxicology of autism and related neurodevelopmental pathologies” which sets the scene for the very latest podcast from Autism Confidential, Episode #044, entitled “Autism Research Roundup”. Her guest is Dr. Alycia Halliday, chief Science Officer of the Autism Science Foundation. Jill and Alycia (also an autism parent) debate the role of genetics as a cause of autism. Genetics is responsible for possibly 20% of autism cases, but much of autism is unexplained or not understood. Jill is a proponent of looking at other causes and there is good-natured sparring on the current debate on causes. The two also discuss studies on early intervention that show improvement in functioning in young children, but early intervention is not shown to overcome the disability. One thing they agree on totally is that no one should take medical advice from Tik-Tok videos.

I love this stuff, but I know not everyone is enthralled with the science-y part of disability. I also love local heroes who do things rather than just talk about them. In Episode #042, Jackie Ceonzo from New York City is a local hero that I would like to meet. She is the founder of SNACK* that provides recreational classes and instructional programs for kids and young adults, located in Midtown East, NYC. Jackie’s autistic son is among those who was constantly rejected for being too autistic. She took matters into her own hands (with the help of many others) and developed a center where her son “…Joey and other children with special needs would be welcome, regardless of their language abilities, behavioral challenges or skill level. She envisioned a place where parents and children would feel comfortable socializing and learning life and recreation skills in a creative and safe environment.”

Episodes #37 and #38 deal with “Dental Care for Patients with Autism, with Dr. Allen Wong.  “By popular request we are featuring two episodes devoted to all things teeth and dentistry, which looms as a huge issue for autism families. Allen Wong, DDS, is Director of Advanced Education in General Dentistry, Residency Program, University of the Pacific. He teaches dentistry for special health care needs, and hospital dentistry as well. Daily tooth care can be difficult for severely autistic kids and adults, and accessing clinical care can be especially difficult when there is a very sensitive or uncooperative patient.”

In Episode #33: "Bridging the Divide", the podcast veers boldly into the divided autism community with Morénike Giwa Onaiwu, a prominent neurodiversity advocate. “…We were thrilled when she agreed to join us for a special episode about the splintered autism community. We had a productive conversation, and spoiler alert, not many sparks flew. In reality, we found we had much more in common than not, and share a passion for tangible progress in the field of lifespan autism care and housing.” 

My favorite observation from Morénike was that there are horrible people everywhere. I can agree with that, even when I don't much like the neurodiversity movement’s attempt to describe all disability as part of a normal continuum of human experience.

Episode 29: Just Say No to the Bullying of Autism Parents

"Pioneering autism advocate Thomas McKean joins us again...to discuss the bizarre online phenomenon of anti-parent bullying by militant autism self-advocates. Like witch hunts of yore, autism parents are too often accused, without evidence, of all manner of sins: torturing their children, infantilizing them, of self-aggrandizement, of ableism, eugenics, and more. Tom McKean says 'Enough!' to this nonsense in an emotional discussion with NCSA's Jill Escher. Please listen to the very end for Tom's gorgeous, spontaneous soliloquy about the profound love autism parents have for their children."

Episode 27: Thriving with Severe Autism at Bittersweet Farms

This is close to home. Bittersweet Farms, near Toledo, Ohio, is “a pioneering model of a farmstead-based residential and day program serving adults with autism complex behavioral needs. In a world where severely autistic adults are routinely rejected from programs, Bittersweet is a rare treasure. We talk with Dustin Watkins, the program's executive director, about the nature of the programs, the benefits of an outdoor, open-space setting for many adults with autism, the meaning and purpose of their physical and creative efforts on the farm, issues around Medicaid ICF and HCBS models, staffing challenges, the community and connection found in programs like Bittersweet, the financial model, and more. “

And then there is Episode 18: The Poop Episode by Dr Joyce Tu and Kelly Bermingham, which is to say that the podcast has something for everyone.

The emergency preparedness project from the National Council on Severe Autism

This is from the National Council on Severe Autism with suggestions to get families thinking about emergency preparedness before it is too late:

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The Annual September 26th Project for 2022 Has Launched — Watch and Share 

September 13, 2022

Dear friends in the autism and special needs community, 

Last year we launched The September 26th Project, the annual emergency preparedness reminder for our families, created in commemoration of Feda Almaliti, founding VP of NCSA, and her son Muhammed, who died senselessly in a house fire on September 26, 2020, and embracing all who have faced such tragedies.

This September we again urge all autism and special needs families to take just 10 minutes on or around September 26th, to take steps to prepare for crisis and emergency. We are not asking for perfection, but for just one or two things that may help avert disaster. Don’t have a fire extinguisher? Now is the time to buy one. Haven’t checked your smoke/CO alarms? September is the perfect time to do it. Haven’t created a family emergency and exit plan? Go for it. Install a keypad lock where it would be helpful and safe. Or register with your local first responders, or create an emergency kit, charge back-up batteries, or attend a CPR class. Just one or two things, each step when taken year after year will make a big difference.

To get started, please watch (and share!) our 2022 September 26th Project video, where autism families who have suffered horrific tragedy share their stories — but also inspire you to take action, just 10 minutes, this September.

With best wishes,

The September 26th Project Committee

Maysoon Salah, Jill Escher, Kelly Bermingham, Lubna Salah

 

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/

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

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)

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

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.

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

 

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

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."

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.

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."

Michigan’s mental health system is failing many with severe autism

I have two adult sons with profound intellectual and developmental disabilities (IDD) as well as friends who have severely autistic family members. What these disabled populations have in common is that they are difficult and expensive to serve, no matter where they live. Finding appropriate services and residential settings is a relentless and frustrating task for most families, especially when choices are deliberately limited to encourage a one-size-fits-all mentality that promotes the idea that everyone can be fully integrated into "the community".

These stories about severely autistic children and adults have many parallels in the world of severe and profound IDD.

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“Falling through the cracks” is a phrase that is frequently used to describe what happens to people with severe autism when they move from school to adult life without the safety net of services provided by the educational system. This also describes what happens to autistic children, many of whom have intellectual and other developmental disabilities, whose problems are too much for the educational system to handle. They are shunted into a world of psychiatric services that were never designed or intended to help people with IDD. 

Below are summaries and excerpts from two stories featured on Stateside, a Michigan Radio show that covers state and local issues, including struggles with the Michigan Mental Health system. To get the full emotional impact of these stories, listen to the interviews with family members and others on the Stateside Website. 

“They say their son needs to be in a psychiatric hospital. He went to jail instead.” 

By SARAH CWIEK, 2/18/19.

“A danger to themselves or others. That’s the threshold set by Michigan law to put someone in a psychiatric hospital….”

Damiean Odisho has severe autism and is described by his father Douglas as “…a big guy with the mind of a child.” Damiean’s parents have had to call the police to protect themselves from outbursts by Damiean that ended up in physical assault or the threat of physical assault. Damiean has autism and “a host of other psychiatric and special needs diagnoses…He’s on ten different medications.”

The police department in Warren, MI, where the Odishos live, know that Damiean is autistic and has issues with aggression. In the past, under similar circumstances, they have transported him to an emergency room while his mother Malinda petitions Macomb County Community Mental Health to admit him for psychiatric hospitalization. This time, however, the police transported him to the county Juvenile Justice Center, where Damiean was booked and charged with resisting arrest. He was obviously not capable of understanding his offense or controlling his overwhelming impulses, so the court released him to his parents and instructed them to return to the emergency room where they should again request psychiatric hospitalization. That request was inevitably turned down as it had been in the past, at which point the cycle begins again.

Quoted in the article is Sarah Mohluddin, the clinical director of an autism program at the University of Michigan: “I think it’s important for people to understand just how common aggression is in autism…But children who have these concerns with aggression have limited access to outpatient providers, and even more limited access to inpatient hospitalization and psychiatric beds. And there are very few psychiatric emergency centers that really know what to do in terms of assessing these children when they are in a psychiatric emergency.”

David Pankotai, the CEO of Macomb County Community Mental Health, had this to say: “Sometimes a hospital might look at a child who’s on the autism spectrum, and think that the issues are more related to environment and behavior as opposed to a psychiatric condition.”

The experts and the people responsible for providing services seem to admit that we have a lousy system of taking care of children and adults with severe autism who may injure themselves or others; they lament that sometimes there is nothing they can do about it.

Damiean turned 17 this year and his parents biggest fear is that he will end up the adult prison system, like so many adults with mental illness. His mother is left with this thought: “He’s going to have this disability for life. And we just work around it the best that we can.”

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“To find help for her disabled daughter, Michigan mother had to leave the state”
By STATESIDE STAFF, 2/19/19

This story is about a 19-year-old young woman with severe autism who has dangerously aggressive and self-injurious behaviors. In this case, the mother found a program that worked for her daughter, but it was in another state and now she is faced with bringing her adult daughter back with no prospects of finding a suitable residential setting for her in Michigan.

From the article:

Jackie [the daughter] has a severe form of autism.

“…She received a state Medicaid waiver for in-home help when she was around four years old. But Sibley [her mother] says the family struggled to find the long-term care her daughter so desperately needed.

“‘It’s very hard to find staff, especially when there are challenging behaviors involved. Most of the people that we had helping us would quit,’ Sibley said.

“After exhausting her options in Michigan, Sibley found the Kennedy Krieger Center in Maryland, a residential facility that specializes in treating severely autistic children. After a year on the waiting list, Jackie was admitted in March 2018. Sibley says that her daughter has received ‘phenomenal’ care there.

“Kennedy Krieger is typically just a three-to-six-month program. Healthcare providers there, knowing there were few options for Jackie back home in Michigan, extended her stay to over a year.” 

That extended stay at Kennedy Krieger with phenomenal care has been costly for Jackie and her family. The family’s private insurance will no longer pay for it and the family must find an alternative in Michigan. To add insult to injury, Michigan now considers Jackie a resident of Maryland and has said that she is no longer eligible for Medicaid in Michigan. That means that she will be denied a Medicaid Waiver that she has qualified for since she was 4 years old until the state agrees to take her back into Michigan’s Medicaid program. No one is paying the bills right now.

Sibley’s advice for Michigan: “Michigan needs to look at having some kind of facility — I think every state does — so that they can house these children that are not just on the spectrum, but severe cases.” 

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Michigan’s obligations to people with developmental disabilities

The excuse that there is nothing appropriate for these children and adults is belied by the experience of numerous families that have found programs that work here and in other states for people with similar disabilities. That there is nothing readily available in Michigan is to some extent caused by decisions the state has made to no longer support a full range of services and residential options for this hard to serve population.

These stories are especially disturbing, because Michigan’s mental health system is obligated, in its agreements with the federal Centers for Medicare and Medicaid Services (CMS), to provide “medically necessary services” to all Medicaid-eligible people with developmental and other disabilities. That includes the social services and supports that allow people to live in community settings as well as the option of an ICF level of care. Most people with severe autism fall into the category of developmental disability and many also have intellectual disabilities.

Most families do not know that under our our state’s system of Medicaid managed care, Michigan does not allow waiting lists for services for people with disabilities who are Medicaid-eligible. But tell that to the families who are desperately struggling to find adequate services for their disabled loved ones, and they will tell you a different story of delay and denial. According to Michigan’s Medicaid Provider Manual, the mental health system “..may not deny services based solely on preset limits of the cost, amount, scope, and duration of services. Instead, determination of the need for services shall be conducted on an individualized basis.” 

In other states, Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) are one option for this hard to serve population. These are technically institutions under Medicaid law, but the word “institution” has been used in only a pejorative sense for so long that families react with fear and loathing to the prospect of “institutionalization”. The ARC Michigan, the state’s most influential DD advocacy group, had the goal of closing all institutions for many years. It has also promoted the elimination of all congregate settings (settings serving more that 3 or 4 people with DD together in one place) even while it is evident to most people that community care is grossly underfunded and of some of it of poor quality. The ARC’s Website showed a video on the history of Michigan Institutions that was produced as if it were a horror show with creepy music and newsreels of huge institutions going back as far as 90 years.

The 1980’s brought significant reforms to the system of longterm care for people with IDD, including the introduction of Medicaid waivers for Home and Community-Based Services as a companion and alternative to the highly-regulated ICF program. Our most influential disability advocacy groups nationwide have been working for years to eliminate ICFs/IID, even for very hard to serve populations. In Michigan, they have all but succeeded, although when I have brought this subject up at meetings, I often hear that there are still ICF beds in the state, but they are only whispered about and not mentioned in polite company. At the same time, families desperate for appropriate residential settings in Michigan are left with seeking out other institutional options such as hospitalization in psychiatric facilities or placements in group homes that are often not willing to take on the most severe behavioral problems.

ICFs/IID along with innovative intentional communities, group homes, and other family-initiated projects can provide a safe and non-isolating environment that both protects residents and in some cases gives more freedom to the people living there, than could ever be provided in an apartment in a community unprepared to care for people with severe autism and IDD. 

Here is something to think about: Why is it that so many families report that their children have been helped and accommodated in educational programs, but there is apparently an unwillingness or inability by the adult services system to replicate that success when these same children reach adulthood? 

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More blogposts and articles on this topic:

From Washington State: Because We Care -- Beyond Inclusion 

A series of Blog posts - "Stuck in the Hospital"

Another perspective from the mother of an autistic daughter in California: 

"Falling Through Cracks: When The Safety Net for Young Adults With Autism Spectrum Disorder Fails "
By EVA LOEFFLER, 2/25/19

“People with ASD and ID are hospitalized at a rate six times higher and will likely have longer psychiatric hospital stays than people without ASD. Many will not receive appropriate treatment that is tailored to their unique needs due to lack of understanding, knowledge, and training by mental health professionals. A recent study found that mental health treatments are challenging due to individuals limited communication skills, unique individual challenges, as well as the mental health field’s tendency for diagnostic overshadowing, which is the assumption to contribute behaviors to the developmental diagnosis, not necessarily the mental health diagnosis.” 

"Joey Jennings' Story"

by Sue Jennings, EP Magazine, December 2017

We Need a Full Continuum of Care for Adults with Severe Autism
By Joan Kelley, 4/25/19