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

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

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."

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