Advocacy done right: Irene Tanzman on VOR's 2024 Legislative Initiative

Irene Tanzman is the mother of a son with severe autism from Massachusetts:

"In this video, I describe the experience of the 2024 VOR (Voice of Reason) legislative initiative. I go into detail about what we did, how we were trained, and what legislation we promoted. For anyone thinking about legislative advocacy for individuals with severe/profound intellectual disabilities and/or severe/profound autism, this is a must-see video. The VOR legislative initiative is bootcamp for legislative advocates. There is no better training for legislative advocacy than experiencing the VOR legislative initiative."

VOR's 2024 Legislative Initiative was held from May 7-9, 2024. I was not able to go this year, but I share Irene's enthusiasm for the experience of meeting directly with legislators and their aides in Washington, DC. and with other family advocates, most of whom have family members with severe to profound intellectual disabilities. 

The most important message that VOR is advancing in its legislative initiative is that listening to families is of primary importance in crafting legislation and policy that serves and protects people with IDD.

You will hear Irene get into the nitty gritty of preparing to talk to legislators and how grueling and exhilarating the experience can be. Educating yourself and others is the first benefit of this advocacy, but it also instills confidence that your own experience with living with disabilities is a powerful message to legislators.

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VOR materials shared with congressional staffers during the VOR 2024 Legislative Initiative.

 

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

Study from Syracuse University shows higher death rates from COVID-19 for people with IDD; calls for more accurate reporting in cause of deaths

Potential Impacts of COVID-19 on Individuals with Intellectual and Developmental Disability: A Call for Accurate Cause of Death Reporting
Dalton Stevens & Scott D. Landes

Research Brief, Issue Number 20, April 14, 2020
 
From the Lerner Center for Public Health Promotion at Syracuse University

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KEY FINDINGS
• COVID-19 deaths will likely be more prevalent among those with intellectual and developmental disability (IDD).
• Death rates from pneumonia are between 2.2 times and 5.8 times higher among individuals with an IDD than among those without IDD, giving us a clear warning of the severity of COVID-19 among people with IDD.
• Underestimation of COVID-19 deaths is potentially more severe for those with IDD.
• Cause of death certifiers must be attentive to accurately recording IDD on the death certificate.
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In this recent study from Syracuse University, researchers report that people with Intellectual and Developmental Disabilities (IDD) in New York State who have confirmed cases of COVID-19, have a death rate of 9.5% compared to a death rate of 4.4% for the general population:

“…Out of 140,000 people with IDD who receive formal disability services in New York State, 1,100 have confirmed Covid—19 and 105 have died.”

“…Given that the population of adults with IDD is more likely to die from pneumonia than the general population, and the development of pneumonia is a characteristic of severe COVID-19 cases, the higher case fatality rate is not surprising. However, it is uncertain how much this disparity will increase as deaths continue to accumulate. “

An analysis of the death rate from pneumonia in 2017, before COVID-19 was present in the population, shows the pneumonia death rate in people without IDD was 1.8%. For people with IDD, the death rate ranged from 3.9 to 10.2% depending on the diagnosis, with Down syndrome having the highest rate.

Why are the fatality rates for COVID-19 higher in people with IDD?

“It is not yet possible to determine the exact causal mechanism behind the higher COVID-19 case fatality rates we are now seeing among the population with IDD. The CDC suggests that people with some specific impairments (mobility, communication, cognition) are more vulnerable to COVID-19. Some disability-advocates and parents of children with IDD suggest that the higher case fatality rates may be, at least partially, due to the slow pace at which the disability service structure has responded to the pandemic.” …”for individuals with IDD to survive this pandemic, as well as any potential future outbreaks, it will be necessary to ensure that the IDD service system is better prepared to adjust rapidly to the challenges of providing care in the midst of severe health crises.”

A complication in accurately assessing death rates for people with IDD from COVID-19 is that the cause of death is often attributed to the disability rather than the virus:

“On close to half (48%) of the death certificates of people with IDD, certifiers inaccurately identify the individual’s disability as their underlying cause of death.3 If this practice continues during the COVID-19 pandemic, we will likely never be able to determine the actual COVID-19 death rate for individuals with IDD. Given low rates of testing and misclassifications of COVID-19 death early on, mortality rates from COVID-19 will be underestimated for the entire population, and underestimation is likely to be more severe among individuals with IDD.”

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See the Research Brief for details and references that appear within the report.
 
"The mission of the Lerner Center for Public Health Promotion at Syracuse University is to improve population health through applied research and evaluation, education, engaged service, and advocating for evidence-based policy and practice change."

426 Eggers Hall | Syracuse | New York | 13244
syracuse.edu | lernercenter.syr.edu

More Choices for people with IDD and their families in Washtenaw County, Michigan

This is a note from Becky Altschuler, another resourceful parent who is creating a program for adults who are not candidates for vocational programs but need a variety of community activities:

Due to the need for high quality day programs for young adults with disabilities, a group of parents is starting a new program in Ann Arbor. This program is intended for young adults who've aged out of the school system (recently or not so recently), and are not candidates for vocational programs. If space is available, we'll also welcome young adult students during the summer break. 

Our goals for this program are to get our kids out in the community and to involve them in a variety of activities. We will meet Wednesdays and Fridays staring June 19, from 9 am - 4 pm at the Ann Arbor Center for Independent Living. 

If you'd like more information about whether this program is a fit for your son or daughter please contact me at A2becky40@gmail.com. We also welcome anyone who wants to work with us to create meaningful options for our kids in adulthood.

A "Home Grown Community" in Washtenaw County, Michigan

This is a note from Kerry Kafafian, about a new organization that intends to build a Home Grown Community (HGC) in Washtenaw County. 

Home Grown Community (HGC) has accomplished a lot over the last few months. The organization has:

• Incorporated in the State of Michigan as a Nonprofit Corporation.
• Named a Board of Directors.
• Visited other housing communities including Benjamin's Hope and St. Louis Center and will visit Bitter Sweet Farms this summer
• Finished a Business plan with a construction and operating budget 
• Applied to the IRS for 501(c) 3 tax exempt status  
• Built strong connections with several IDD groups and service providers and law makers
• The Web site will go live soon 

Home Grown Community (HGC) is inspired by Camphill and Innisfree Villages, as a voluntary community with adults with intellectual and developmental disabilities. HCG is dedicated to providing a Lifesharing home and learning environment in an atmosphere of beauty warmth, and respectfulness. All community members are valued, and all are encouraged to explore and contribute to a meaningful and challenging life.

Our location will be on the outskirts of a town in Washtenaw County, MI. Roughly 100 acres will hold a farm, Community Center, Craft House, 6-10 homes with about 10 bedrooms each (4 for Residents and 6 for Coworkers) and there will be a cafe/coffee shop along the main road.

For a great example of an over 30 year old lifesharing community see Innisfree Village. 

Here are some good Videos to view and share with others: 

Benjamin's Hope in Holland, Michigan

Innisfree Village in Crozet, Virginia

Camphill Village, New York