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

March 2021: COVID-19 Update

The best place to follow COVID-19 numbers in Michigan is through the on-line magazine “Bridge Michigan, Michigan’s nonpartisan, nonprofit news source”. The Bridge's “Michigan coronavirus dashboard: vaccines, cases, deaths and maps” uses clear graphics and maps to explain where the virus is most prevalent, vaccination rates, and other statistics that help assess the effects it is having on our population .

As of March 23, 2021,

“Michigan is amid a steep increase in weekly cases, which have tripled in a month. The state has the fourth-highest rate of new confirmed or probable cases per 100,000 in the country.

“On Tuesday, the state reported that 12 percent of tests came back positive, up from 10 percent the day before. The state now has the fourth-highest positive rate in the nation.

“Michigan also reported 16 additional COVID-19 deaths, eight of which followed a review of medical records. All of the deaths occurred in March.”...

Where vaccinations are having a dramatic effect:

According to USA Today, “’Safest place in the city': COVID-19 cases in nursing homes drop 89% as residents get vaccinated” by Ken Alltucker and James Fraser, 2/28/21,

“The number of COVID-19 cases and deaths at America's nursing homes has dropped significantly since December as millions of vaccine doses have been shot into the arms of residents and staff.

“The weekly rate of COVID-19 cases at nursing homes plummeted 89% from early December through the second week of February. By comparison, the nationwide case rate dropped 58% and remains higher than figures reported before late October.”

Disability Scoop published an article on 3/10/21, “Intellectual Disability Among Greatest COVID-19 Risk Factors, Study Finds” by Shaun Heasley, citing research showing that people with intellectual disability disabilities are at a much higher risk of dying from COVID than the general population.

“New research suggests that people with intellectual disability are about six times more likely to die if they contract COVID-19, a higher risk than almost anyone else.

“A review of 64 million medical records from individuals seen by 547 health care organizations across the U.S. between January 2019 and November 2020 finds that intellectual disability is the greatest risk factor — other than old age — associated with COVID-19 deaths.”

According to Tennessee Lookout, Tennessee was the first state in the nation to prioritize people with intellectual and developmental disabilities in its initial vaccine distribution phase.

From the article “COVID-19 numbers plummet among disabled with vaccine rollout” by Anita Wahdwani, 3/9/21:

“The numbers of new COVID infections among people with intellectual and developmental disabilities, and staff who care for them, decreased by more than 80 percent from December 2020 to February 2021, according to newly released data from the Department of Intellectual and Developmental Disabilities."...

”The fatality rate among people with intellectual and developmental disabilities in Tennessee was three-and-a-half times as high as other Tennesseans — a rate comparable only to nursing homes. DIDD programs serve a total of about 12,500 people with disabilities. At least 57 have died and 1,503 tested positive for the virus."

Treatments for COVID improve by trial and error, despite a fractured health system and missteps along the way:

USA Today summarized the progress in treating COVID-19 in this article, “Treatment for COVID-19 is better than a year ago, but it still has a long way to go” by Karen Weintraub, 3/14/21.

Dr. David Fajgenbaum is director of the CORONA (COvid19 Registry of Off-label & New Agents) Project, which has been tracking more than 400 drugs given to 270,000 COVID-19 patients. The article lists potential treatments:

"There are four basic categories of potential treatments, according to Fajgenbaum, each of which needs to be given at a different time in the disease course.

• Drugs that boost the immune response early in infection, such as monoclonal antibodies, are given while the body is mounting its response to the virus in the first week after infection. Targeted at high-risk people, these are intended to prevent their disease from getting worse.
• Antiviral drugs, such as remdesivir, target the SARS-CoV-2 virus that causes COVID-19. These are believed to be most effective in the early stages of disease, when they can prevent the virus from taking hold and replicating inside human cells.
• Drugs such as the steroid dexamethasone that suppress the immune system are given to the sickest hospitalized patients a week or two after symptoms begin, when their biggest problem is likely to be an immune overreaction to the virus, rather than the virus itself.
• Finally, there are drugs that treat symptoms of COVID-19, such as blood clots, which can theoretically be prevented with the blood thinner heparin, though much of this research is inconclusive.

"It's important to use different drugs at different stages of the disease, Fajgenbaum and others said. Tamp down the immune system too early and the virus could wreak havoc; fail to stop an immune overreaction and the patient could die."

Read more about the complexities of finding treatments in the middle of a pandemic for patients desperate for life-saving relief.

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Update, March 25, 2021 from The Detroit Free Press 

The COVID-19 case rate is rising in Michigan. There has been a 633% rise in hospitalizations since March 1 among people ages 30-39 and an 800% increase among those 40-49 years old....Those 30-49 — who do not have wide access to COVID-19 vaccines in Michigan — are being admitted to hospitals at a faster pace than those 80 and older, the hospital association reported...People in that 30-49 age group also are most likely to be parents of school-age children, among whom the virus is spreading like wildfire. Almost two-thirds of Michiganders over the age of 65 have gotten at least one dose of the vaccine. 

Michigan: The great St. Patrick’s Day weekend ice storm of 1997

The recent extreme weather event in Texas where the entire electric grid almost shut down, reminded me of a similar (but much less threatening) ice storm that occurred in Michigan in 1997. I thought about subtitling this “Little House on the Prairie with Wheelchairs". I’m sure there were many Texans who went through a similar experience, trying to survive with disabled or medically fragile family members who did not stop needing care and support just because everything that depended on electricity stopped working.

This is how the National Weather Service described the Ice Storm of 1997:

“ …From Detroit and Ann Arbor south to the state-line, the freezing rain changed to rain, but not before heavy ice accumulations occurred. Total precipitation amounts ranged from 1.5 to nearly 2.5 inches from Detroit and Ann Arbor south to the Ohio state-line. … In the Detroit Metropolitan area, the ice storm resulted in power outages to over 425,000 homes and businesses; the 3rd largest outage in history, and the worst ever for an ice storm. Several thousand residents were without power for as long as 4 days. In addition to powerlines, falling trees damaged dozens of cars and houses throughout the area. Most were closed, and there were numerous auto accidents.” 

Here is how I remember it…

It began last Thursday night [3/13/1997] with hard rain falling into below freezing temperatures at ground level. By morning we had had 1.6 inches of rain with a 1/2 inch coating of ice on every tree limb, pine needle, and blade of grass in Southeastern Michigan. It was the worst ice storm since records have been kept here for more than 100 years.

The roads had icy patches, but the main problem was trees and tree limbs that toppled onto roadways and power lines, confounding morning commuters and cutting power to some 12,000 homes. Needless to say, schools were closed. Later, something like 425,000 homes and businesses would be affected.

Our lights were dim all morning and the microwave did not work right.

Late in the morning, the temperature dropped and a wind started to blow, knocking out more power lines all day. Our power went out completely a little after noon.

At our house, when the electricity goes, so does the heat and running water. We set up camp in the evening by the fireplace and John got our small gas-powered generator out to run the sump pump, refrigerator, and food processor. We had McDonald’s stuff for dinner and I studied for my midterms by oil lamplight.

[The boys, Danny and Ian, needed their food ground to a consistency where they would not choke on it - swallowing problems often accompany severe cerebral palsy - hence the importance of powering up the food processor. And for those of you who do not have a well and septic system for water and sewage, the sump collects clean water that would otherwise flood the basement. The sump pump pumps it outside where it drains off with the rest of the rain water. If the sump pump stops working, the basement floods. The one benefit of this is that we had plenty of water to flush toilets that we hauled up from the basement sump in buckets.]

It was 16 degrees outside Saturday morning and about 40 degrees in the house. I really flubbed my midterm, partly from not studying and partly because I was suffering from borderline hypothermia.

The rest of Saturday was cold and miserable. We had a constant fire and heated water in old camping pots.

We ate McDonald’s stuff again and snuggled and huddled around the fire singing songs. Jennie [who was ten years old] sang songs I have not heard her sing for some time. And of course we compared our lives to that of the Little House on the Prairie family. [Read “The Long Winter” by Laura Ingals Wilder to get the feel for wind and snow drifting through cracks in the house and the long trek to bring wheat into the starving town that had been cut off from its food supply by the relentless winter storms.]

The most exhausting part of the whole ordeal was being cold much of the time. I’m sure the pioneers could eat so much because they burned up so many calories trying to stay warm. And of course there were the chores we had to do to survive - stoking the wood pile, feeding the fire, washing dishes in heated water, lugging up buckets of water from the sump to flush the toilets, and keeping Danny and Ian warm.

[I don’t remember precisely, how we kept Danny and Ian fed, bathed, and warm, other than it was superimposed on the added chores of running a house without electricity. I do remember that they were somewhat excited and stimulated by living in front of the fireplace most of the day and going to bed with blankets and sleeping bags mounded on top of them.]

The temperature Sunday morning was 10 degrees. It really did not get above freezing until Monday, when it went into the 50’s. Jennie's school was still closed Monday, but Danny and Ian’s school was open. Jennie and I hung out at the mall and the library. We had a very good breakfast at Big Boy.

When we came home for short intervals, the smell of woodsmoke was overpowering and the chill disheartening. Just when it seemed that we might have to spend another night without electricity, the lights went on and transformed us back into our civilized selves.

It’s appalling how almost worthless our house is without electric power. And we are so wasteful, but so happy to be among the lighted.

[Unlike the weather event in Texas, Ann Arbor was not totally shut down and many families decamped to motels for the duration. This was not an option for us - imagine a family of five with two big wheelchairs, a dog, and two cats holed up in a motel room for four days. We couldn't imagine it either.]

COVID-19 and people with Down syndrome

According to an article in USA Today, “COVID-19 is especially deadly for adults with Down syndrome, but many can't get a vaccine shot", by Marc Ramirez, 3/8/21, families and advocacy groups for people with Down syndrome are pushing local, state, and federal agencies to prioritize people with Down syndrome for Covid-19 vaccinations.

Increased vulnerability

“Recent studies indicate that adults with Down syndrome, specifically those 40 and older, are three to 10 times as likely to die from COVID-19 than the general population. The findings confirmed what many had already suspected – that those with the genetic disorder, already prone to respiratory issues, heart conditions and other risk factors for coronavirus, were more susceptible to the virus’s harmful effects. 

“A 40-year-old with Down syndrome faces the same COVID-19 risk as a typical 70-year-old, according to the most recent study led by researchers at Emory University in Atlanta, part of an international collaboration. The results, researchers and advocates said, indicate the need to prioritize vaccination for individuals with Down syndrome, especially adults.

“While the growing body of research helped spur the Centers for Disease Control and Prevention to add Down syndrome to its list of high-risk groups for priority vaccination in December, advocates said many states still aren’t sufficiently emphasizing the population.”

The status of people with Down syndrome for Covid vaccination varies from state to state

“According to the Global Down Syndrome Foundation, at least 29 states now place those withDown syndrome in the CDC’s recommended high priority category for vaccination, based on the foundation’s interpretation of state guidelines.

“While the landscape continues to change as advocacy efforts ramp up nationwide, individuals with Down syndrome remain in lower-than-recommended tiers in eight states, according to the association’s last tally. As for the remaining states, the group said guidelines did not definitively cite priority status for those with Down syndrome.”

Risk Factors

“The primary COVID-19 risk factors faced by individuals with Down syndrome are immunodeficiency issues and conditions associated with premature aging, said Anke Huels, chief author of the Emory University study and assistant professor of epidemiology and environmental health.”
….

“Moya Peterson, director of the Adults with Down Syndrome Specialty Clinic at University of Kansas Medical Center, said it was clear that “if they got COVID, they got sick, very fast. We knew this was going to be a problem.

“The population contracts pneumonia easily, she said, and is prone to weight issues, heart issues and autoimmune disorders.

“The list also includes obstructive sleep apnea, which some studies have linked to a higher risk of COVID-19 and which can be experienced by between 40 to 70% of individuals with Down syndrome, depending on age.”

COVID restrictions have also caused problems - “Caregivers said that in addition to anxiety and depression, people with Down syndrome have suffered physical and intellectual setbacks as a result of COVID-19 lockdowns.”

Michigan Expands access to COVID vaccines

Tuesday, March 9, 2021

From the Michigan Department of Health and Human Services:

Following the announcement of a ramped-up effort by the Biden Administration to produce enough doses to vaccinate 300 million Americans by the end of May, the Michigan Department of Health and Human Services (MDHHS) announced that it is expanding vaccination eligibility beginning 3/8/21:

“MDHHS is moving forward with the vaccination of Michiganders age 50 and older with medical conditions or disabilities and caregiver family members and guardians who care for children with special health care needs. Beginning Monday, March 22, vaccine eligibility will again expand to include all Michiganders 50 and older. To date, more than 40% of Michiganders age 65 and older have been vaccinated.” 

"All vaccine providers may begin vaccinating the two new priority groups of 50 and older with medical conditions or disabilities and caregiver family members and guardians who care for children with special health care needs by Monday. Those eligible to receive a vaccine should:

• Check the website of the local health department or hospital to find out their process or for registration forms; or
• Check additional vaccination sites, such as local pharmacies like Meijer, Rite Aid or Cardinal Health (U.P. residents); or
• Residents who don’t have access to the internet or who need assistance navigating the vaccine scheduling process can call the COVID-19 Hotline at 888-535-6136 (press 1), Monday through Friday from 8 a.m. to 5 p.m., Saturday and Sunday, 8 a.m. to 1 p.m. or can call 2-1-1.”

All this depends on vaccine availability that is increasing but has not yet kept up with demand.

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People living in long-term care facilities, including nursing homes and licensed group homes, along with staff, have been a priority in Michigan. Washtenaw County is also vaccinating people with severe disabilities, along with their caregivers and family members, who live in their own or their family’s home. 

For people with developmental disabilities who are eligible for Medicaid-funded Home and Community-Based Services (HCBS), their eligibility is based on their need for an institutional level of care (meaning a nursing home or an Intermediate Care Facility for Individuals with Intellectual Disabilities - ICF/IID), but they choose to receive those services at home. 

In other counties where vaccinations have not been made available generally for people with intellectual and developmental disabilities, I think there is a good argument for asserting rights under the Americans with Disabilities Act that prohibit discrimination against people with disabilities - in this case, people with the same eligibility for institutional services who choose to live in their own or their family’s home. Their risks of contracting COVID and the probability of severe complications are likely as high as for those who live in nursing homes and have been a priority for vaccination. Why should they not be considered a priority because they live at home and not in a long-term care facility?