October 13, 2023

VOR's Weekly News Update

Part 2

VOR's Fall Legislative Initiative

This week, we began a new initiative, emailing Congressional Staffers about more of the issues that our further imbalance the DD system and marginalize those with the most severe intellectual and developmental disabilities and autism.

VOR has always supported the rights of people with ID/A and their families to have the right to make their own informed choices as to the care and socialization they want. We also support maintaining and investing in a full range of residential services and employment opportunities for our loved ones.

Through that lens, we have focused on a few bills that affect our families. The issues we are covering concern the critical shortage of Direct Support Professionals and the attempts to eliminate sheltered workshops and 14(c) employment opportunities.

So far, we have sent out emails to about 300 of the 500+ congressional offices. We have scheduled to meet by Zoom with about 30 of the staffers who have responded to our emails.

The bills we support are:

•  S. 1332 / H.R. 2941: Recognizing the Role of Direct Support Professionals Act
•  S. 1298: Supporting Our Direct Care Workforce and Family Caregivers Act
•  H.R. 553 & H.R. 1296: Both protect employment options for individuals with I/DD.

VOR opposes:

•  S. 533 / H.R. 1263: Transformation to Competitive Integrated Employment Act: These bills effectively eliminate a highly successful program that creates a workspace for many in the I/DD community.

VOR would like these bills expanded to include necessary services for the MOST vulnerable I/DD individuals, in addition to those with less severe physical and mental healthcare needs:

•  S. 100 / H.R. 547: Better Care Better Jobs Act
•  S. 762 / H.R. 1493: HCBS Access Act

Our Fall Membership & Fundraising Campaign

This is a critical time for people who support choice for families of people with I/DD and autism.

We are asking our members to reach out to people in your neighborhood, your town, your state,

or on Facebook and other platforms,

to help us to grow a larger community of families

who are concerned about the

shortcomings of our DD System,

the biases against those with the most severe and profound I/DD and autism

and the erosion of choice in residential services and

employment opportunities

for our loved ones.

An opportunity to speak out in favor of 14(c) programs from the U. S Department of Labor:

Section 14(c) Stakeholder Engagement Session

The Department of Labor invites you to attend a stakeholder engagement session to share your experiences with the 14(c) program and what changes are needed to expand employment opportunities for people with disabilities.



On September 26, 2023, Acting Secretary Julie Su announced that the Department of Labor is launching a comprehensive review of the Section 14(c) program, which currently authorizes employers, after receiving a certificate from the Department’s Wage and Hour Division, to pay subminimum wages to workers with disabilities. The Department is now holding a series of engagement sessions to hear diverse views of participants on the Section 14(c) program. Input from stakeholders like you will help inform the Department’s future efforts on this important issue.

This engagement session will take place on Thursday, November 02, 2023, from 3:30pm to 4:30pm ET.

The meeting will be held in a hybrid format. You are invited to attend in-person at the U.S. Department of Labor National Headquarters in Washington, DC. Alternatively, you can participate virtually via Microsoft Teams. This invitation is non-transferable outside of your organization. However, we encourage you to extend an additional invitation to a worker with a disability who has personal experience with the Section 14(c) program and/or competitive integrated employment (CIE).

During the session, we welcome your input on important areas of focus for reviewing the 14(c) program, experiences with CIE options, lessons from states that have expanded CIE and/or prohibited subminimum wages, impacts of potentially ceasing to issue 14(c) certificates in the future, and any related issues.

To register, please RSVP to: [email protected] by October 26, 2023. In your email indicate whether you will attend in-person or virtually. We will circulate additional logistics information to registrants via email one day prior to the meeting. We are asking participants to limit their speaking time to just a few minutes for this session to ensure that the Department is able to hear from as many participants as possible.

CART and ASL interpreter services will be provided. If you need reasonable accommodations to participate in the engagement session, please contact: [email protected].

If you have any questions, please email: [email protected].

Toddlers with Developmental Delays are Missing Out on Help They Need

By Claire Savage, Associated Press, via ABC News, October 8, 2023

Alexander watches Paw Patrol with fervor, bowls his baby brother over with hugs and does everything with gusto.

What the 3-year-old West Chicago toddler can’t do yet is speak more than a few words. His balance is wobbly and he isn’t able to let his preschool teachers know when he’s hurt or scared.

When his mother, Hilda Garcia, had him tested, the youngster qualified for five therapies through a U.S. program dedicated to treating developmental delays in babies and toddlers — treatment designed to help Alexander develop the tools he needs to thrive.

The relief she felt in identifying what he needed was short-lived.

The federally mandated Early Intervention program is plagued by chronic staffing shortages nationwide, leaving thousands of desperate parents frustrated: They know their children need support, they’re aware of proven therapies that could make a difference, but they have to wait for months to get the help they need.

After 14 months of phone calls, hours of research and pushing herself to the limit with work and childcare, Garcia finally landed an in-person early intervention appointment, but even then she couldn't get Alexander all the therapies he needed. She tears up as she recounts how overwhelming the fight to secure access has been.

“I didn’t have any support,” she said.

Early Intervention was created in 1986 to address developmental delays in children like Alexander as soon as possible. About one in six children in the U.S. has at least one developmental disability or other developmental delay, according to the U.S. Centers for Disease Control and Prevention.

Since all U.S. states and territories accept federal funding for Early Intervention, they are obligated to provide services to kids who qualify under the Individuals with Disabilities Education Act.

But providers are scarce in almost all states. Some children wait months or years for the care they need, and many age out of the program before they access any services at all.

The COVID-19 pandemic worsened chronic staffing shortages, in part because many providers didn't want to risk infection by entering families' homes, even when restrictions on in-person visits were lifted, according to Maureen Greer, the executive director of the Infant and Toddler Coordinators Association, which supports the Early Intervention system nationwide.

For similar reasons, families were also less likely to request in-person help during the pandemic. But now the number of children seeking services has rebounded, and states are struggling to find the staff to meet the needs of families with young children with disabilities, according to Katy Neas of the U.S. Department of Education.

Service delays in Illinois, where Alexander lives, nearly doubled in 2022, according to Chicago-based early childhood advocacy organization Start Early. Waitlists — technically not allowed since all eligible kids are entitled to Early Intervention — have increased dramatically and thousands of providers have left the field, according to the Illinois Department of Human Services.

When children turn 3, the responsibility for providing special education services shifts from Early Intervention to school districts. But those systems are understaffed and booked up, too, according to speech-language pathologist Sarah Ziemba, an Early Intervention provider in Peoria, Illinois.

Waiting means skipping precious months of development, while acting early saves money on special education and other services later in life.

“Research really supports that the earlier, the better. And so when we miss those opportunities to help them at those younger ages, sometimes we are limiting their potential into adulthood,” said Ziemba.

Continued

Medicare Is in Desperate Need of Modernization and Expansion — Not Privatization

Monetizing Medicare and Medicaid undermines coverage for those who need it most.

By Jamila Headley & Nicole Jorwic, Truthout, October 8, 2023 

or 58 years, Medicare and Medicaid have provided life-saving and life-sustaining care for millions of Americans, but they are rapidly being weakened by politicians who insist on inviting corporations to oversee their implementation.

Health insurance companies are creeping into Medicare and Medicaid via so-called “managed care.” Often proposed as a cost-saving measure, managed care is when patients agree to visit only certain doctors and hospitals, and the cost of treatment is monitored by a managing company. Here in the United States, these companies are often corporations focused on maximizing profit at the expense of patients.

Medicare and Medicaid are widely accessed public benefits programs in the U.S., with Medicare serving nearly 57 million older adults and Medicaid serving 87 million low-income, pregnant people and children. Yet despite the resounding popularity of these taxpayer-funded programs, politicians continue inviting profit-obsessed corporations into the implementation of these programs.

Medicare Advantage plans offered by private health insurers now cover more than 50 percent of all Medicare recipients at a cost to taxpayers of more than $400 billion a year. Health insurance companies are also creeping into Medicaid via so-called “managed care” (i.e. managed denials). Late last month, the U.S. Department of Health and Human Services (HHS) Office of Inspector General released a report that showed that 25 percent of the claims for Medicaid beneficiaries are denied by private insurers via managed care. To make matters worse, private equity firms are buying up nursing homes, and home care agencies are joining insurance companies in gouging public programs, causing older and disabled Americans to bear the cost.

Monetizing these programs flies in the face of the intent of Medicare and Medicaid and undermines the promises of coverage for those who need it most. Corporations beholden to quarterly profit margins and shareholders — not taxpayers or patients — have focused on increasing profit margins through two key strategies: overcharging the government while trimming costs by limiting the services they cover and paying care workers less; and denying and delaying care people need.

At the same time, private equity firms are joining insurance companies to profit off people at Medicare and Medicaid’s expense. Between 2000 and 2018, private equity’s stake in nursing homes grew from $5 billion to $100 billion. Private equity ownership accounted for half of the deals in the home care industry in 2018 and 2019, and its stake in the hospice field has grown by 25 percent between 2011 and 2020. The results are disastrous: layoffs and staff reductions, limitations of services, higher risks and worsening care outcomes. Patients in nonprofit hospice care see physicians three times more often than patients in for-profit hospices

.

This profiteering invasion of programs ostensibly intended for public gain (not corporate profit), has life-and-death consequences for people across the country. One National Bureau of Economic Research study estimates that reassigning Medicare Advantage plan consumers with the worst rates of claim denials could avert at least 10,000 deaths per year. Similarly, research has shown that private equity purchases of nursing homes significantly increase patient mortality rates and decrease patient mobility.

Read the full Read the full article here here

In the event that you don't believe that private equity firms look upon our families' needs as investment opportunities, take a look at this article from Investor Times, "How to Start a Group Home for Diabled Adults"

Autistic Students have Died, Been Assaulted in Bus Incidents Across SE Michigan

By Lily Altavena, Detroit Free Press, October 11, 2023

By the time Casandra Jones found her son's body sprawled on Nevada Street near their home on the east side of Detroit, the school bus that dropped him off was gone.

Zyair Harris, 13, was killed by oncoming traffic in April 2022 after his school bus driver failed to deploy the vehicle's safety stop sign and lights. The driver, Debra White, was supposed to drop him off in front of their home, Jones said, so the teen, who had autism spectrum disorder, wouldn't have to cross.

Zyair — who Jones described as smart and outgoing — still held family members' hands crossing the street or going into stores. Though his family knew him to be cautious, he risked running across the street. Losing Zyair stunned Jones and her younger daughter, who witnessed the fatal accident.

"It was awful, terrible," Jones said. "I was losing it."

The grief, a year and a half later, doesn't go away.

Across southeastern Michigan, children with autism have been assaulted on the bus. Bullied. Left with marks on their body. Even lost, only to be found in an empty bus more than an hour later, parents told the Detroit Free Press. They said that, despite state-mandated training, drivers and aides don't always understand how to react when a child's behavior spins out of their control, a circumstance that can become fraught fast in a moving vehicle.

Ann Arbor's school district was thrown into turmoil over the summer — with the superintendent ousted — after a video showed a bus aide smacking and restraining a 7-year-old boy screaming in terror. A lawsuit claims his mother was kept in the dark about the incident for five weeks. The district has defended its handling of the case, and a spokesman said the aide involved was removed from service when the incident was observed on video.

The Free Press identified a string of incidents on Michigan school buses involving autistic children reported by media outlets over the past five years, several leading to lawsuits against school districts and the third-party companies often tasked with transporting students. Advocates and experts say these incidents, while likely not widespread, are a problem that needs addressing through better training and hiring, particularly when the job of a bus driver or aide can be extraordinarily demanding and involve children who require specialized support.

Some children with autism struggle with transitions, and "the biggest transition to a student with autism we're going to make our entire school day is on a school bus," said Patrick Mulick, a behavior analyst and school administrator in Washington state who advocates for better training for school bus staff.

Continued

Of interest: Much has been said about competitive integrated employment. The following article raises some interesting questions about the value of some of these programs, and goes on to raise other issues about how some companies capitalize on people with I/DD and autism.

Coffee Shop Hires Workers With Disabilities. Why Do Some Say That’s Bad News?

By Morgan Hughes, The State, September 28, 2023

A new coffee shop is moving into downtown Columbia, but the unique business model has some disability rights advocates concerned. Bitty and Beau’s Coffee is a national chain of coffee shops that predominantly hires people with developmental and intellectual disabilities such as Down syndrome and autism.

The company boasts the slogan “a human rights movement disguised as a coffee shop.”

Leaders at Able SC, a statewide policy group that advocates for disability rights, were concerned about the February 2022 announcement that Bitty and Beau’s planned to open a shop in Columbia, the group’s CEO Kimberly Tissot said. Tissot said she worried that disabled employees would be used like props, meant to offer customers smiles and hugs but not to be taken seriously as people. Businesses that employ only people with disabilities have also been known to pay below minimum wage because of a federal waiver that allows it, other disability rights advocates said.

But Bitty and Beau’s Coffee co-founder Amy Wright, who founded the business with her husband in honor of two of her children who have Down syndrome, said those concerns come from misconceptions, not facts, about the business.

Continued

Opinion: It’s Time to Rethink the Americans With Disabilities Act

By Evelyn Clark, The New York Times, October 4, 2023

The Supreme Court on Wednesday will hear a case that could shape the future of the Americans With Disabilities Act.

The case originated when Deborah Laufer, who has multiple sclerosis and uses a wheelchair, filed a lawsuit in 2020 claiming that the Coast Village Inn and Cottages in Maine violated her rights under the Americans With Disabilities Act. Her case states that the hotel didn’t fulfill its legal obligations to provide information about the accessibility of its accommodations. That, the lawsuit argues, put the hotel out of compliance with the A.D.A.’s Reservations Rule, which requires hotels to post information about accessibility features, like the availability of larger bathrooms to accommodate a wheelchair, on their website.

The company that owned the hotel argues that Ms. Laufer, who lives in Florida, had no right to sue because she never intended to visit the hotel. She describes herself as an A.D.A. “tester,” and her lawsuit against the Coast Village Inn and Cottages is one of hundreds of such lawsuits she has filed against businesses, citing the act.

The question before the Supreme Court is whether Ms. Laufer has standing to bring this lawsuit. The American Civil Liberties Union and other civil rights organizations argue that she suffered discrimination that caused “dignitary harm.” Those groups point to a long history of “tester” plaintiffs defending civil rights, including Black plaintiffs who sued over racially discriminatory housing. On the other side, groups like the U.S. Chamber of Commerce argue that the A.D.A. requires more direct harm and that testers like Ms. Laufer disproportionately hurt small businesses through expensive lawsuits.

I am a lawyer. I also use a wheelchair after suffering a spinal cord injury eight years ago. Although I do not practice disability rights law, I have an intimate (and complicated) relationship with the A.D.A., and I remain conflicted, personally and professionally, in this case. On the one hand, standing requires a concrete injury, something I’m not entirely convinced Ms. Laufer has suffered. On the other, private lawsuits are currently necessary for people with disabilities to achieve equal access to businesses, public spaces and places of employment.

Too many U.S. media reports have vilified people who use the A.D.A. to enforce accessibility or to recover settlements, referring to them as “crybabies” and calling their lawyers “unethical,” but the law is largely meant to be enforced by people with disabilities. The Justice Department itself says that private suits “are an essential complement” to the federal government’s enforcement of the A.D.A.

Society owes a great deal to disability rights advocates who fought for the enactment of the A.D.A., which opened up America’s public spaces and infrastructure to a swath of the population that had long been denied access.

But more than 30 years later, my hope is that today’s hearing will provide an opportunity to revisit the law for the sake of benefiting the disability community and businesses alike. Too much of the burden of compliance is placed on disabled citizens filing lawsuits to gain access to businesses. This could be a moment to rethink the A.D.A.’s framework. The Justice Department could take a larger role in enforcing the law, and Congress could amend the statute to give businesses a window to correct violations.

Continued

Discovery Reveals Fragile X Syndrome Begins Developing Even Before Birth

By Charlene N. Rivera-Bonet, University of Wisconsin-Madisoon, October 10, 2023

Fragile X syndrome, the most common form of inherited intellectual disability, may be unfolding in brain cells even before birth, despite typically going undiagnosed until age 3 or later.

A new study published today in the journal Neuron by researchers at the University of Wisconsin–Madison showed that FMRP, a protein deficient in individuals with fragile X syndrome, has a role in the function of mitochondria, part of a cell that produces energy, during prenatal development. Their results fundamentally change how scientists understand the developmental origins of fragile X syndrome and suggest a potential treatment for brain cells damaged by the dysfunction.

The study, led by four postdoctoral fellows — Minjie Shen, Carissa Sirois, Yu (Kristy) Guo and Meng Li — working in the lab of the lab of Xinyu Zhao, neuroscience professor and neurodevelopmental diseases researcher at UW–Madison’s Waisman Center, found FMRP regulating a gene called RACK1 to promote mitochondrial function. Using a drug to enhance mitochondrial function, they were able to rescue brain cells damaged by lack of FMRP.

Individuals with FXS may present developmental delays — not sitting, walking or talking at expected ages — as well as mild to severe intellectual disability, learning disabilities and social and behavioral problems. About half are also diagnosed with autism spectrum disorder.

In previous research, Zhao found that mitochondria in mice with an FMRP deficiency that imitates FXS were smaller and unhealthy. Diving deeper, they also discovered that FMRP regulates genes involved in mitochondria fission-fusion, a process in which mitochondria fuse into a bigger shape in order to produce more energy for the cell.

Continued

Back Issues of VOR's Weekly Newsletter are available on our web site.

Please Click Here!

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

VOR SUPPORTS:

S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.

VOR OPPOSES:

S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.

VOR HAS SIGNIFICANT CONCERNS WITH:

S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.



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 receive our newsletter.

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.

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]