October 28, 2022

Trick or Treat!

Our Treat for Hallowe'en this year is our offer to

Give Two Gift Memberships for the Price of One!

From now until Thanksgiving, when you give a friend or family member the gift of a one-year membership in VOR, you may give another gift membership for free!

This offer applies only to individual gift memberships. You must be a current member to take advantage of this offer, and your gift recipients must either be new members or people whose membership have lapsed for more than one year (before October 15, 2021)

During Halloween - which can get quite loud and rowdy at times - keep an eye out for children carrying blue buckets. Historically, parents will use these blue buckets to help others identify that their children are autistic and non-verbal.

Read the full article here

This week, many of the featured stories center around a few of the many challenges facing families of individuals with autism.  

The first group of articles come from a yearlong investigation by Hearst Newspapers on the controversial use of restraint and seclusion in schools nationwide. Other articles help illustrate the diversity of the autism population and the fact that one size does not fit all for these individuals and their families.

When Schools Use Force

Hearst Publications, via Albany Times-Union, October 27, 2022

Series by Emilie Munson, Matt Rocheleau, Alex Putterman, Libby Seline, Alexandra Kanik

A year-long national investigation by Hearst Newspapers provides the most comprehensive look to-date at how often restraint and seclusion are used in America's schools - and how often children are harmed or die as a result. This series uncovers and highlights systemic abuses and problems, from discriminatory practices to major gaps in oversight. Journalists scrutinized years of patchy federal data on restraint and seclusion, conducted an unprecedented effort to gather records from all 50 state education agencies and obtained tens of thousands of pages of school district documents. Reporters scoured news articles, court records, government reports and other sources, studied laws in all 50 states, spoke to researchers and policy makers and interviewed more than 70 parents, students, teachers and school administrators.

Click here for the main page of this multi-story feature

Controversial and Often Used, these Little-Known Practices Cause Harm, Even Death, Among U.S. Schoolchildren

With scant oversight, schools routinely physically restrain students or confine them alone in small rooms. Parents don’t always know. Abuses and discrimination occur. Children are traumatized, injured, even die.

Click here for article

The U.S. Regulates how Hospitals can use Restraint and Seclusion. Why Not Schools?

By Emilie Munson

n the spring of 2010, federal lawmakers came tantalizingly close to passing legislation that would have set federally enforceable standards and limitations for how restraint and seclusion can be used on children in America’s schools.

A federal report in 2009 found “hundreds of cases of alleged abuse and death related to the use of these methods on school children.” Congress held hearings. Parents of children subjected to these practices, some with tears streaming down their faces, pleaded for action. 

Lawmakers had already, nearly a decade earlier, passed federal legislation restricting the use of the practices in psychiatric facilities. Bipartisan support for regulations in schools grew.

But on the morning of the House vote, a powerful voice – the country’s largest teachers’ union – circulated a letter to lawmakers revoking their support and shifting their official position to “neutral.”

The bill passed the House that morning, but its momentum fizzled. It was never called to the Senate floor for a vote. In the 12 years since, legislation to regulate restraint and seclusion in schools has never again been so close to passage.

Click here for article

‘He didn’t deserve that’: The Stories of 13 Children, Young Adults who Died after Restraint or Seclusion     

Every day in public and private schools across the country, children are “restrained” – physically held by staff members, pinned to the ground, or bound by mechanical devices such as straps or handcuffs. Other times, students are kept in “seclusion,” confined alone in rooms ranging from dark, windowless small supply closets and bathrooms to spaces resembling padded cells.

These practices are used thousands of times per school day nationwide, cause hundreds, if not thousands, of injuries to students each year, and, experts say, an untold number of children suffer lasting emotional trauma.

While rare, dozens of children have died after being restrained or kept in seclusion over the past three decades.

A Hearst Newspapers investigation found that, since 1989, at least 85 children, teenagers and young adults 21 and younger have died after being restrained or kept in seclusion in public and private schools, juvenile justice centers, residential facilities or other settings that cater to people with special needs.

Here, we remember them.

Click here for article

It’s Time to Embrace ‘Profound Autism’

By Alison Singer, Co-founder and President of the Autism Science Foundation, Spectrum News, October 27, 2022

Earlier this month, I attended the Autism-Europe International Congress in Kraków, Poland, where the theme was “Happy Journey Through Life.” Although this sounds like an admirable goal, I would not choose the word “happy” to describe my daughter Jodie’s life with profound autism, nor would many other families who struggle with the day-to-day challenges of life on the profound end of the autism spectrum, a reality that is largely invisible to mainstream society.

Jodie is minimally verbal and suffers from painful self-injurious behaviors, intellectual disability, aggression, anxiety, sleeplessness and seizures. Her frequent aggressive outbursts make it hard to involve her in community activities. Although she is often content and enjoys working on a farm, no one who witnesses her pulling her own hair or headbutting the wall would call her “happy” during those episodes. And my family and I are not “happy” that she will require 24-hour care and supervision for the rest of her life.

My experience at the Autism-Europe International Congress — and my experience as a parent of a child with profound autism — makes me more convinced than ever that we need to bifurcate the diagnosis of ‘autism spectrum disorder’ and add a new diagnosis of ‘profound autism’ to better serve this vulnerable and underserved population, which is consistently overshadowed by the higher-functioning members of the autism community.

Families like mine who face profound autism have advocated for this distinction for quite some time. We strongly believe that the breadth of the autism spectrum has become unwieldy, and the phrase “autism spectrum disorder” has become such a big-tent term that the people under that tent often have little in common with one another. Autism can mean genius or an IQ below 30. Autism can mean highly verbal or nonverbal. It can mean graduating from Harvard Law School or ‘exiting’ high school with a certificate of attendance. If we are going to be able to personalize our approach to care, as the Lancet Commission report suggested, we need terminology and language that are specific and meaningful, rather than terminology that lumps everyone together.

The neurodiversity community’s success at drawing attention to its issues has led many without deep experience with autism to conclude that those issues are representative of everyone. To the broader public, the word “autism” now only describes the more verbal, traditionally skilled, visible end of the spectrum — because people who meet those criteria are able to have a voice, attend conferences, represent themselves at policymaking meetings and appear in the media. The result is that autistic people with severe intellectual disability and the most challenging behaviors have become invisible and been left behind.

This blind spot was painfully illustrated to me at the Autism-Europe International Congress, where the vast majority of delegates represented the higher-functioning end of the spectrum and yet claimed to speak for everyone with autism. Many delegates became visibly angry over some of the terms presenters used in their talks to describe autism traits, such as “patient,” “disability” and even “intervention.” Many took to social media to bash these scientists; others walked out of the room.

But these words are necessary and correct. My daughter consumes medical services; that makes her a patient. She has a disability; if she didn’t, she wouldn’t qualify for services. The same is true for so many other families who suffer (yes, suffer) from profound autism.

Read the full article here

How a Therapy Once Seen as a Victory for Autistic Kids Has Come Under Fire

By Liz Tung, WHYY (NPR) October 24, 2022

When parents first heard about Applied Behavior Analysis (ABA) in the 1990s, it felt like a lifeline — for both them and their autistic kids. ABA was an intensive therapy based around a system of rewards and punishments designed to change children’s behavior; through repetition and consistent reinforcement, good behaviors could be formed, while undesirable ones were eliminated.

The therapy was individualized and time-consuming — to the tune of 40 hours a week — and it needed to be delivered early in a child’s development.

Suddenly parents were seeing positive results. For some, it offered the promise of normalcy for their kids; for others, the humbler goal of making their family lives more manageable. It was also expensive — so parents lobbied to have it covered by insurance or schools. By the 2010s, ABA became a standard treatment for kids with autism.

But over the past few years, that first generation of kids to receive intensive ABA has grown up — and they’re telling a different story. 

ABA practitioners and experts have defended the therapy, saying that they’ve seen major changes for the better, and that the progress it offers outweighs its potential for damage. But self-advocates aren’t convinced — with some saying that, with other therapeutic options available, there’s no reason to keep ABA at all. 

Alison Singer knew early on that something was wrong with her daughter, Jodie. "She had troubles from the time she was born,” Singer said. Jodie, who was born in 1997, wasn’t eating or sleeping much, and she cried constantly. 

All of this was on Singer’s mind when her daughter Jodie first showed signs of developmental issues — and when she was eventually diagnosed with autism. By this time, it was the late 90s — decades past the age when autistic kids were routinely institutionalized — but Singer still feared for her daughter’s future. She worried Jodie would be forced into the kind of life her brother had had — no schooling, no independence, no job, no real future.

But Singer was determined to fight.

Singer started Jodie on ABA shortly before her third birthday, and she says the results were undeniable.

“We saw some changes almost immediately after a few sessions,” she said. “And I was like, ‘Wow, this is magic.’” 

Read the full article here

Autism Services for Adults in Philly Area Still Haven’t Rebounded from COVID Shutdowns

By Harold Brubaker, The Philadelphia Inquirer, October 24, 2022

When state officials approved Devon Geiger for the most comprehensive benefits Pennsylvania offers for adults with autism and intellectual disabilities, her mother, Deb Geiger, had peace of mind. She thought her daughter would get the services she needed.

But when Deb Geiger started looking for programs, she found that options that seemed like good fits for Devon were full and not even adding people to wait lists. Geiger works in marketing for a software firm and now has to spend more time in the office, which means she can’t be home with Devon.

“It’s grim,” Geiger said recently, lamenting that Devon, 22, doesn’t even bother changing out of her pajamas any more. “She’s sinking in.”

Geiger and her daughter, who live in Horsham, are among the growing number of families who were approved for Pennsylvania’s most generous intellectual disability benefits under Medicaid but remain without services as agencies struggle to restart services that had to be shut down early in the pandemic.

Worker shortages plaguing many industries and low government rates are big factors, but not the whole story, experts said. State regulators also are ratcheting up the pressure on agencies to serve their clients in the community in groups of no more than three, experts said. This is part of a decades-long effort to shed all traces of forms of congregate care, but it also means short-staffed agencies can serve fewer individuals.

“We have a lot of families sitting at home really struggling,” said Audrey “Dee” Coccia, cofounder of Vision for Equality, a Philadelphia nonprofit that advocates for individuals with intellectual disabilities and their families.

The Inquirer interviewed a half-dozen families about their struggles finding services for their adult children. What follows are snapshots of three of those families. The state’s highest level of benefits, called a consolidated waiver, effectively has no limit and often runs into the hundreds of thousands of dollars a year in services.

Read the full article here

Public Counsel found racial disparities had nonetheless persisted in spending on services for children and teens.

The report released Wednesday found similar kinds of problems with spending on adults with developmental disabilities. And at the majority of regional centers, disparities in spending between Latino and white adults had worsened over time, the report concluded.

The Department of Developmental Services said it welcomed the report and “has made it a priority to approach these discrepancies in a thoughtful and systematic way.”

“Although important progress has been made in recent years, there still is much room for improvement,” the department said in a statement. 

Continued

Minnesota - High-Needs Boy Stuck in ER amid Growing Child Welfare Pressure in MN

By Jeremy Olsonm Star Tribune, October 22, 2022

A distressing situation is unfolding inside the emergency department of Ridgeview Medical Center in Waconia, where a 10-year-old boy with severe autism and aggression has been confined for seven months.

Foster and group homes can't handle him, so county guardians keep sending him back to the ER, the one place obliged by law to take him in. Without schooling or specialized therapy, the boy and staff are stuck in a cycle of confrontation. Run-ins with nurses, support staff and security guards have compelled some workers to quit and left others bruised and injured.

"This kid, he's just created total chaos in the area back there," said one ER worker involved in the child's care who asked not to be identified for fear of losing their job. "We're all just feeling very helpless, hopeless."

Ridgeview is an extreme example of a growing problem in Minnesota for large and even small hospitals — the boarding of children with uncontrolled behavioral and developmental problems. M Health Fairview Masonic Children's Hospital was so overrun with such children last spring that it converted an ambulance bay into a shelter for them.

Around that same time, the 10-year-old arrived at the Waconia hospital ER. And except for one failed three-day attempt to move him to a group home in the Twin Cities, the boy has been confined to a four-bedroom unit of the ER designated for mental health patients.

ERs are the dumping ground by default because of a federal law — the Emergency Medical Treatment & Labor Act, or EMTALA — that requires them to screen and stabilize any patients who show up at their doors. The law also requires "appropriate" transfers of patients, but in the case of troubled children that often means to group homes or residential treatment centers that are full with waiting lists. And so they wait.

"For children with autism, children with developmental delays, the worst possible scenario would be sitting in an emergency department," said Lew Zeidner, M Health Fairview's director of transition and triage services. "What they need is predictability. They need structure. When they don't have that predictability, that constancy, they get agitated. When they get agitated, people around them get agitated and that can lead to physical confrontation."

Read the full article here

Nebraska’s Division of Developmental Disabilities to Hold State-Wide Town Hall

By Jordan Himes, Nebraska News 8, October 25, 2022

Nebraska’s Division of Developmental Disabilities will host its annual statewide town hall in November.

The division’s director, Tony Green, will visit seven cities throughout the state to receive input on services provided by the division.

Green will also provide the public with updates on future initiatives.

“Nearly 12,000 Nebraskans who are aging and/or experiencing a disability are receiving long-term support through one of our Waiver programs”, Green said in a statement, “This is an opportunity to hear what’s working well, and where there are opportunities for enhancements to our services and supports.”

Anyone who would like to learn more about Home and Community-Based Service Waivers for the developmentally disabled, aged and disabled, traumatic brain injury or pending family support waiver is encouraged to attend.

Click here to view schedule and locations of the statewide events

Arkansas - The Board of Developmental Disabilities Services (DDS) Meeting

Posting from Arkansas Dept. of Human Services, 

Wednesdayk November 16, 10:30 am

Conway Human Developmental Center, 

For more information, click here

October is National Disability Employment Awareness Month

“A job is about a lot more than a paycheck. It’s about your dignity. It’s about respect. It’s about your place in your community.”

 - Joe Biden, August 20, 2020

VOR supports all opportunities for employment for individuals with intellectual and developmental disabilities. We advocate for programs that increase competitive integrated employment with the understanding that there is a need to preserve employment opportunities for those who are unlikely to be accommodated by most companies that do try to provide jobs to those with I/DD and autism. 

Vocational centers and 14(c) Certificates are unique employment opportunities tailored to meet the needs of individuals with I/DD and autism. In these facilities, job coaches are equipped to help our loved ones develop skills and productivity, while having the DSP training to address the physical, behavioral, and hygienic challenges that arise during the course of a day.

October is the month celebrate Employment Awareness for people with I/DD and autism. Let us increase all employment opportunities, as part of true person-centered planning for all of our loved ones, not just those who are readily accommodated into competitive integrated employment programs. 

Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

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

[email protected]

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.

[Please click on blue link to view information about the bill]

VOR SUPPORTS:

Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R. 3089 & S. 1544- Accelerating Kids' Access to Care Act - This bill requires state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers without undergoing additional screening requirements. Among other things, a qualifying provider must (1) serve minors, or adults whose condition began as a minor; and (2) have previously been screened for Medicare participation or for participation in the Medicaid program of the state in which the provider is located.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

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.



VOR OPPOSES:

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 & S. 3238 - 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.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, 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.6860 & S.3417 - The Latonya Reeves Freedom Act - Supporters of this bill consider it to be the Disability Integration Act of the 117th Congress. The bill calls for the phasing out of intermediate care facilities for individuals with Intellectual Disabilities.

Families of Individuals with

Severe/Profound I/DD and Autism

Need a Voice in Washington, D.C.

For Forty Years, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we have engaged in over ninety meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

Please click here to join, renew your membership, or contribute to VOR