September 10, 2021
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.

VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

VOR & YOU: Hurricane Ida
Two of our members have shared their stories about damages brought on by Hurricane Ida. We would like to share them with you.

Mary Kay Cowen and her husband Mark helped evacuate the group homes operated by Crossroads Louisiana during Hurricane Ida. Mary Kay’s brother Tommy lives in one of those homes, They are returning to their homes today, having gotten word that power and clean, potable water are up and running in all of the homes. They have been staying at Camp Hopewell in Oxford, MS, six hours away.

Gloria Satriale, founder and Executive Director of the PAAL School. has shared with us about the damage done to the school and asked for help in rebuilding and refurnishing.
Mary Kay, Mark, Tommy, Susan, & the Crossroads Louisiana Family
Mark and I have spent the last 2 weeks serving 3 meals a day to over 40 (maybe as many as 45) clients and the dedicated staff of Crossroads Louisiana during their evacuation to Camp Hopewell in Oxford, MS, due to Hurricane Ida.

Executive Director, Susan McIlwain, and her lead staff continues to amaze me as I learn of all the challenges they face in providing 24/7 care for their clients while doing all they can to consider the needs of the Direct Care Workers who provide the environment that means health and happiness to their charges.

Pets (dogs, cats, lizards) and families were allowed to evacuate with us. Transportation and comfort were given high priority. Once the storm had passed and a team of 4 could travel to New Orleans to evaluate damage, subsequent days were spent with confirming homes were safe, repairs were taking place, refrigerators and freezers were secure or cleaned out, etc. There was constant monitoring to make sure all client homes had electricity and usable water so we could return with the least amount of disruption to care.
There were daily shopping trips for food and supplies as well as anything that might make Crossroads' clients content were consistent. When behaviors occurred there was immediate action on how to calm clients safely and discussions on how to help maintain their emotional and mental health.

Returning home took days of preparation. Transportation, food and supplies so that clients' needs are provided for as soon as they enter their homes, how to give the staff that have worked 24/7 for the last 2 weeks time off, etc.

How do you thank everyone involved with this huge undertaking? I ask anyone who wants to help in any way to consider making a donation to Crossroads Louisiana. I am blessed to have found such a special organization to provide the critical daily care my brother needs. Your help in offsetting the unlimited costs they have accumulated during this evacuation is very much appreciated.
Downingtown Residents, Volunteers Pull Together after Ida's Damage
By TaRhonda Thomas and 6abc Digital Staff, 6ABC News, September 6, 2021

Across the street from the Downingtown train station, there is a large parking lot for all of the commuters.
But, right now, there's no room for cars because the parking lot is full of debris. The items are what was destroyed in homes throughout the borough after Ida brought historic flooding to the Brandywine Creek.

One local organization took a huge hit in the flood. The school Preparing Adolescents and Adults for Life (PAAL) has been closed since last week when floodwaters overtook the building. The school focuses on teaching children and young adults life skills that can give them some level of independence.

"Numb, sad, nauseous. It just gets worse," said PAAL founder and executive director Gloria Satriale.

The closure means that special needs students who rely on the school won't have the services immediately available. Insurance isn't covering any of the damage for PAAL since the nonprofit didn't have flood insurance on the building.

"The Brandywine Creek hasn't flooded in 100 years," said Satriale.

Hoping to rebuild and reopen, PAAL created a GoFundMe page. Parents like Caprice Shortell, whose 18-year-old son Ryan attends the program hopes PAAL's resources will return to help her son.

"It's heartbreaking," she said, "Because it's the first school my son has ever felt at home."

Help Rebuild the PAAL School
Please help! To the despair of students and teachers, the floodwaters of Hurricane Ida severely damaged the PAAL School, which is located near US Route 322 in Downingtown, PA…an area that was tragically affected by the storm. On Wednesday, September 1, the first floor of the school building was underwater….destroying expensive computers, furniture, and gym machines…along with specialized equipment for students with autism. Most items are a total loss as insurance does not cover flood damage. The cost of cleanup alone is devastating….though parents, students, and staff are pitching in all they can to help. Total damages are expected to be more than $100,000…an amount that is a fortune for this small school.

The PAAL School is such a very special place…where love and compassion combine with excellent training to make a home-away-from-home for kids with autism. Although the program has received many honors, our highest achievement is changing the lives of students for the better.
You can be sure that any money raised by this GoFundMe will be used to bring the PAAL Program back to life. You can help the PAAL School make a comeback by donating today to Mission for Educating Children With Autism (MECA Of Pa), a 501(c)(3) nonprofit organization.

VOR & YOU: Direct Support Professionals
National Recognition Week
National Recognition Week For
Direct Support Professionals
September 12 - 18, 2021

We would like to take a moment to thank our "other family", the Direct Support Professionals who provide love, care, therapy, and treatment for our loved ones with Intellectual and developmental disabilities.

We thank you for your devotion, for the personal sacrifices you have made, and for all of the time you have spent away from your own families to ensure the health and well-being of our family members,

We thank you for doing your job and for doing so much more than your job description, so much more than what's required, but for actually bringing them into your hearts.

We thank you for the routine chores, the feeding, clothing, cleaning and bathing, and for the exceptional work that you add to each of these tasks - the communications with the non-verbal, the connections to the person inside, the special bonds and one-on-one relationships that you make.

We want you to know that we support you. We are fighting for better wages, for better training, and for recognition of your profession as health care providers. We are currently working with Members of Congress to provide all of these measures for all DSPs in all settings.

Thank you for all you do.

With gratitude,

The Families of VOR
Their Voice: Recognizing Direct Support Professionals for Their Important Work
By Monica Villar, the Herald, September 5, 2021

On behalf of the many service providers in Utah Valley and across the state, families and people with disabilities, I wanted to identify and thank all direct support professionals.

I chose this time because Sept. 12 marks the beginning of National Direct Support Professional Recognition Week. The idea and creation of this recognition week started in 2008 and was influenced by John F. Kennedy Jr. The Kennedy family has a history of advocating on behalf of people with disabilities beginning with their sister Rosemary. Many laws protecting this population, Special Olympics, Best Buddies and other advocacy groups began with different members of the family.

John Jr., son of President John F. Kennedy, was no exception to this legacy and turned his focus to the many individuals who were providing supports and services to people with special needs. “The NADSP, National Association of Direct Support Professional, was created by a small group of committed professionals that included John F. Kennedy, Jr. when he was the President of Reaching Up and involved with the New York State Consortium for the Study of Disabilities at the City University of New York. Since those early days, the NADSP has promoted the development of a highly competent and ethical direct support workforce that supports people with disabilities in achieving their life goals.” John F. Kennedy Jr. wrote, “Quality is defined at the point of interaction between the staff member and the individual with a disability.”

The skills required by a DSP to ensure the quality referred to by Kennedy are skills that most of us have but not all of us share as easily. Those skills include compassion, understanding, patience, attentiveness and patience. They aren’t taught in a classroom or learned from a book but they can be developed and increased through service.

National News:
Disability Service Providers Shuttering In Many States
By Michelle Diament, Disability Scoop, September 10, 2021
Half of states are reporting that Medicaid home and community-based services providers have closed since the start of the pandemic, with many seeing multiple types of services shut their doors.
In a survey of Medicaid home and community-based services programs in 41 states that was conducted through mid-July, 25 reported that at least one provider had permanently closed.

The findings come in a report released recently from the Kaiser Family Foundation.

Adult day programs were the most likely to have closed followed by in-home care providers, supported employment and group homes, the report found.

In 16 states, closures affected multiple types of home and community-based services providers.
Survey results showed that the pandemic exacerbated existing workforce shortages at group homes and for services provided in individuals’ homes, but there were also impacts on providers from people with disabilities and their families declining to allow workers into their homes due to coronavirus concerns.

Meanwhile, the report indicated that closures to comply with social distancing measures affected day programs and supported employment.

Adults With Autism, Mental Illness May Be at Higher Risk for Severe COVID
By Robert Preidt, US News and World Report, September 8, 2021

Adults with autism, intellectual disabilities or mental health disorders are at increased risk for COVID-19 and severe illness, researchers report.

Being aware of the heightened risk is important in prioritizing COVID-19 prevention measures, such as vaccination, testing, masking and distancing for these groups, the researchers said.
"These high-risk populations should be recognized by clinicians, and these groups should be prioritized for vaccine outreach and education," study co-author Whitney Schott, a research scientist at Drexel University's Autism Institute, said in a school news release.

The researchers analyzed Medicaid data to assess COVID-19 risk factors among adults ages 20-64 with autism, intellectual disabilities and mental health disorders, as well as a control group of adults without those conditions.

Certain factors elevated their risk. For example, autistic adults and those intellectual disabilities or mental health disorders were more likely to live in a residential facility, receive in-home services from outside caregivers, have an avoidable hospitalization and have a high-risk health condition, compared to adults in the control group.

If they did develop COVID, these individuals were more likely to develop severe illness, the researchers found.

The study was recently published in the journal Autism.

"Care providers, policymakers and advocates should be aware of the higher rates -- among autistic adults, adults with intellectual disability and adults with mental health diagnoses -- of risk factors for contracting COVID-19 and more severe illness if infected," said study co-author Lindsay Shea, an associate professor at the Autism Institute.

'A New Low': TRICARE Cuts Services for Children with Autism, Concerning Military Families
By Rachael Riley, The Fayetteville Observer, August 16, 2021
In 2013, when her father returned from a third deployment, Mia Martin was diagnosed with autism at 3 years old. 

Autism is a bio-neurological developmental disability that impairs normal brain development and ultimately cognitive function and social interaction.

Mia was enrolled in public school for a while.

Her days started at about 5 a.m. to catch a bus.  
She’d sit in a classroom until about 1 p.m. then head off to therapy for four hours, ending her day at about 6 p.m.

The 12-hour days were part of Mia’s routine for four years. 

Mia’s father, Fort Bragg combat veteran James Martin, knew it took a toll on Mia.

The public classroom setting was too rigid.  

“Even in a classroom of 15 kids with a special education teacher and an assistant, my daughter is quite the handful,” Martin said.

Mia couldn’t adapt.

The 12-hour days were part of Mia’s routine for four years.  

Mia’s father, Fort Bragg combat veteran James Martin, knew it took a toll on Mia.

The public classroom setting was too rigid.  
“Even in a classroom of 15 kids with a special education teacher and an assistant, my daughter is quite the handful,” Martin said.

Mia couldn’t adapt.

It’s not only his own daughter who Martin worries about — it's all the other military children with autism he believes will be negatively impacted.
What’s changing?

In March, the Defense Health Agency, which oversees TRICARE, announced that by May, advanced behavioral analysis services outside of clinical settings will no longer be covered by the military insurance.

Applied behavioral analysis is a popular intervention for autism that teaches behaviors by breaking down asks into small steps and training in a precise way, according to the National Institutes of Health.  

For Mia, who is nonverbal, it’s helped her communicate her wants and needs, while also helping her to get back on track if she has “a meltdown," Martin said.

Redirecting Mia's focus doesn’t come from a teacher but rather from the behavior technician at her side.

Registered behavior technicians help implement treatment and behavior plans that teach behaviors and skills universally used.

According to a July news release from TRICARE, behavior technicians were reclassified as non-clinical, thus not covered by the insurance, and as a result, not accompanying children into the classroom.

The release states a TRICARE contractor may authorize board-certified behavior analysts to provide time-limited clinical advanced behavioral analysis services for a child in the school setting.
Martin compared the change to going to a doctor’s office that has no support staff, physician assistant or licensed practical nurse.

Autism vs Intellectual Disability: Are they Synonymous?
By Yolande Loftus, BA, LLB, Autism Parenting Magazine, September 9, 2021

A LinkedIn post by Russell Lehmann caught my attention recently; in a video the motivational speaker talks about how the autism community insulting the mental health community “grinds his gears”. Defining autism, especially for those who found their identity in the condition, elicits strong emotions. Many on the spectrum, with high intellect, are vocal about autism not being like other intellectual conditions or disabilities—to them autism exists in a separate sphere to disabilities, disorders and the uber offensive term “mental retardation”.

Believe it or not, “mental retardation” was a medical term used for people with intellectual disabilities decades ago, but the terminology was officially changed when then President Obama signed Rosa’s Law. Unfortunately, individuals with intellectual disabilities are often more stigmatized and socially excluded than any other group.

In a misguided way of advocating for autism, the condition is sometimes favorably compared to other mental conditions, or intellectual disabilities. This not only adds to stigmatizing intellectual disabilities, it also ignores the fact that it is possible–and probable–to be on the spectrum and have a co-occuring intellectual disability.

While these conversations are important, many parents are not overly concerned with precise boundaries of inclusivity when it comes to diagnosis. Instead ,they want to know where autism and intellectual disability meet (or diverge) for purposes of treatment and intervention. In this article, autism and intellectual disability will be examined to find the link and differences between these conditions and help those confused by their apparent synonymous nature.

VOR Bill Watch:
[Please click on blue link to view information about the bill]


Congressman Glenn Grothman (R-WI) has introduced two bills in the House to support
Vocational Centers and 14(c) Wage Certificates:

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


H.R.4131 & S.2210 - The Better Care Better Jobs Act - We don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.
Direct Support Professionals:

Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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