November 18, 2022

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.

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

VOR & YOU:

Protection & Advocacy Hearings, Ohio


On November 1st, and again on November 15th, advocates in Ohio appeared in hearings held by the state Legislature for the purpose of examining the states' Protection & Advocacy Agency (P&A), Disability Rights Ohio.


Ohio has a provision in its state code, Ohio Section 5123.603 | Joint committee to examine protection and advocacy system, that requires the state legislature to hold hearings to review the effectiveness of its P&A and determine if it is meeting the needs of the I/DD community in Ohio. The current P&A in Ohio is Disability Rights Ohio (DRO). This section of the State Code may be found at https://codes.ohio.gov/ohio-revised-code/section-5123.603


Family advocates, providers, and non-profit organizations from across the state appeared before the committee and provided testimony as to their experience with DRO. The hearings paint an interesting picture, contrasting the strongly negative views of many families and providers against the view of DRO and some of its supporters. Indeed, in their opening presentation, a spokesperson for DRO admitted that it does not protect the rights of individuals to ICFs, sheltered workshops, or facility-based day programs. This means there are approximately 20,000 people with DD in Ohio (roughly 4,500 in ICFs and about 15,000-20,000 in sheltered workshops or day programs) who do not have access to Ohio’s protection and advocacy system.


We strongly advise our readers to view this testimony.

It's long, but hard to stop watching once you start.


Of particular interest are the testimony of Caroline Lahrmann (Past President of VOR and lead opponent to the DRO class action lawsuit Ball v. Kasich), Harris Capps (a more recent Past President of VOR), Peggy Connolly and Kurt Miller in the November 1 hearing. In the November 15th hearing, we recommend watching the testimony of VOR's Tom Gilbert and Brookside Extended Care's Kim Russell, both of whom work with our loved ones and object to the way DRO operates, often interfering with the individuals's care, and of DRO's continued efforts to dismantle the state's ICF system.


The hearings may be viewed here:


November 1 Hearing: https://ohiochannel.org/video/ohio-joint-committee-to-examine-the-protection-and-advocacy-system-11-1-2022


November 15th Hearing: https://www.ohiochannel.org/video/ohio-joint-committee-to-examine-the-protection-and-advocacy-system-11-15-2022

Help Us Help

VOR's mission is to advocate for high-quality care and human rights for all individuals with intellectual and developmental disabilities. Our goal is keep our members informed of their rights, to help families network with others and share their experience, to provide useful information on federal, state, and local news to help us all to become better advocates for our loved ones.


As we approach our 40th Anniversary, we find ourselves again in difficult and challenging times. This has been a hard year for fundraising, due to the rise in the cost of living, the number of charitable non-profits reaching out for contributions, and the number of political groups that have sought donations during the past few months.


In order to continue to help families like yours, people with I/DD and autism like your loved ones, and to protect choice of residential care and employment opportunities in years to come, we need to increase our membership and to increase donations.


Please give generously. Consider signing up for a monthly donation plan. If you are of a certain age, you may save money by making a qualified distribution from your IRA. Include VOR in your estate planning, or consider other forms of long-term giving. For more information on how you can help, please view our options at:


https://www.vor.net/get-involved/donate-to-vor/item/membership-donations

Special Offer!


For the months of November and December,

anyone donating $250 or more to VOR

will receive a first-edition copy of


MICKI EDELSOHN'S

new book

MOM WITH A MEGAPHONE

Micki addressed VOR members at our 2022 Annual Meeting, telling the story of her 50 years of advocacy and philanthropy, starting with the birth of her son Robert, through her building of 25 homes for people with intellectual disabilities, and sharing her experiences, hopes, and fears as she navigated the political and financial landscape that defines the I/DD system today.

Please click here to Donate

Another Special Offer!


Give Two VOR 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).


You may give an unlimited number of memberships with this special offer!

(4 the price of 2, 6 for the price of 3, etc.)

    Click Here to Give Two VOR Gift Memberships     For the Price of One!

State News:

Texas - How did a Gun get into a Group Home for People with Intellectual Disabilities? Turns Out, It’s Legal.

After a caretaker was cleared for fatally shooting a 27-year-old man with autism, the man’s father seeks to change state law.

By Tanya Eiserer and Jason Trahan, WFAA News, November 17, 2022


Inside a Dallas Police interview room, Murray Msewe finds himself trying to figure out how he ended up there. 


“Oh my goodness, what did I do?” he cries out, according to a police video obtained by WFAA. “What did I do, man?” 


It was July 10, 2021, and he’d just shot Joshua Moore, the 27-year-old autistic man the state paid him to care for in a Dallas group home.  


“He was trying to stab me with a fricking knife, man,” Msewe says to himself on the video. 


Joshua’s father, Don Moore, remembers getting the call about his son. 


“I was in shock when I heard the words,” he recalls. “Murray had shot Josh. We didn't know Josh had passed until we had talked with the chaplain down at the hospital.” 


Moore had placed his son in a southeast Dallas group home, expecting him to be safe.


Now, he wanted to know: How did Joshua get a knife in there? And why did Msewe, the caretaker, keep a gun in a group home with vulnerable people?


Moore would soon learn something else: Texas law does not forbid guns in group homes.


“What if Josh had accessed the weapon, just as he did the knife, and shot the caregiver or another resident?” Moore said. “It's very possible that that kind of scenario could have played out.”


Moore reached out to his local lawmaker for help changing the law.


WFAA was there as State Rep. Chris Turner, D-Arlington, and his staff met with Moore this past summer.


“The state failed your son,” Turner told him.


“The laws are not there to protect the rights of the individual,” Moore replied.


Turner told Moore he planned to draft legislation what would be called Joshua’s Act to forbid guns in group homes.


“You can't bring a firearm into a hospital, or nursing home, or a number of other types of facilities, and there should not be an exception for these types of long-term care facilities,” Turner said.


Continued

Pennsylvania - DOH to Invest Nearly $12M to Enhance Long-Term Care Facilities

by: Alexis Loya, WTAJ News, November 15, 2022


The Department of Health (DOH) announced its plans to distribute millions of dollars in federal funding to help long-term care facilities sustain quality care.


Applications are open for long-term care facilities to receive their share of $11.7 million in federal Centers for Disease Control and Prevention (CDC) to help build resilience to sustain quality care as the population ages and needs change, according to the DOH. 


The DOH said the “Long-Term Care Quality Investment Pilot RFA” Request for Applications is open to skilled nursing facilities (SNFs), personal care homes (PCHs), assisted living facilities (ALFs) and intermediate care facilities (ICFs).


“We want to make investments that will contribute to the long-range success of facilities that care for some of our most vulnerable residents,” Acting Secretary of Health and Pennsylvania Physician General Dr. Denise Johnson said. “These funds will be invested in key areas including workforce development, staff retention and infrastructure developments that support infection prevention control and emergency preparedness.”


Continued


Note: The sad irony of this story is that later this month, Pennsylvania's DOH intends to close two of its state-operated ICFs, the Polk and White Haven State Centers.

Georgia - DeKalb County Disabled Man Forced to Move from State Contracted Facility because of Low Staffing

By Ashli Lincoln, WSB-TV, November 15, 2022


The family of 60-year-old Errick Gore told Channel 2′s Ashli Lincoln that their brother was forced to move out of a state-contracted assisted living facility last week because of staffing shortages.


Gore, who lives with an intellectual disability, qualifies for services under the Georgia Department of Behavioral Health and Developmental Disabilities’ Division of Intellectual and Developmental Disabilities.


His sisters say they were given only two weeks’ notice that the facility would be closing.


“A voluntary or involuntary closing require 30 days’ notice, so no, not enough notice given to the family,” said Shan Patillo.


A report released this summer by the Department of Justice’s independent reviewer found the state is struggling to keep up with staffing of services provided for people with disabilities.


Right now Gore is sitting in a metro area hospital, which is protocol while he awaits for the state to place him in another facility.


However, Gore’s family said they were notified this week that it will be their responsibility to relocate Gore.


Continued

New York - Disability Groups Rally for Higher Wages, Citing Thousands of Vacant Positions

Caregivers who work with people with disabilities say the economic climate has driven many people out of the industry

By Raga Jutin, Times-Union, November 16, 2022


Dozens of workers who care for people with disabilities converged at the Capitol Wednesday, calling on Gov. Kathy Hochul to invest in a workforce that has seen record turnover and staffing shortages, complicating the lives of thousands of New York residents living with disabilities.


Underfunding is an issue that pops up perennially and has been well documented for over a decade, but nonprofits and advocates say the current economic climate has led to far more financial difficulty for direct support professionals who work with people with intellectual or developmental disabilities. 


Turnover rates are high, as are vacancies. New York Disability Advocates estimates nearly 20,000 direct support staff positions remain vacant. They say the crisis can be solved, partly, by higher wages.


While disability advocates saw some of their demands addressed during this year's budget session, they are asking Hochul and her administration to avoid letting progress stall. The budget adopted in April saw a cost of living adjustment of 5.4 percent, the first meaningful adjustment in a decade, advocates said Wednesday.

Workers are calling for agencies to receive wage enhancements of $4,000 for every eligible employee, which would enhance hourly rates of pay by around $2.19 per hour.


And as next year's budget session draws closer, they’re asking for an 8.5 percent cost of living adjustment, citing rising costs for rent, fuel and transportation that have in turn left nonprofit agencies cash-strapped and unable to compensate workers. 


"This is about human dignity — it's about people being paid a living wage," said state Sen. Pete Harckham, a Westchester County Democrat. "And it's about people with differing abilities knowing that the people who provide them care will be there when they need."


Pandemic-driven worker shortages have played a large role in the industry-wide shortage, which has also meant that several facilities have been shut down, including many run by the state Office for People with Developmental Disabilities. Around 38 percent of providers have discontinued or reduced programs in the past year alone,.


Read the full article here

November is National Family Caregivers Month

UNSEEN:


How We're Failing Parent Caregivers

and

Why It Matters

Watch Online November 18-30, 2022


November is National Family Caregivers Month, a time to recognize and honor family caregivers. The team that created this documentary are offering a limited-time opportunity to view their film

to raise awareness of caregiving issues, educate communities, and increase support for caregivers.


Tickets are $10

Click here for more information


Please note that the proceeds of this screening do not go to VOR,

We are sharing an opportunity to view this film with our members.

National News:

‘Impending Intergenerational Crisis’: Americans With Disabilities Lack Long-Term Care Plans

By Sam Whitehead, KHN News, November 11, 2022  


Thinking about the future makes Courtney Johnson nervous.


The 25-year-old blogger and college student has autism and several chronic illnesses, and with the support of her grandparents and friends, who help her access a complex network of social services, she lives relatively independently in Johnson City, Tennessee.


“If something happens to them, I’m not certain what would happen to me, especially because I have difficulty with navigating things that require more red tape,” she said.


Johnson said she hasn’t made plans that would ensure she receives the same level of support in the future. She especially worries about being taken advantage of or being physically harmed if her family and friends can’t help her — experiences she’s had in the past.


“I like being able to know what to expect, and thinking about the future is a bit terrifying to me,” she said.


Johnson’s situation isn’t unique.


Experts say many people with intellectual and developmental disabilities do not have long-term plans for when family members lose the ability to help them access government services or care for them directly.


Families, researchers, government officials, and advocates worry that the lack of planning — combined with a social safety net that’s full of holes —

has set the stage for a crisis in which people with disabilities can no longer live independently in their communities. If that happens, they could end up stuck in nursing homes or state-run institutions.


“There’s just potential for a tremendous human toll on individuals if we don’t solve this problem,” said Peter Berns, CEO of the Arc of the United States, a national disability-rights organization.


About one-quarter of adults in the U.S. live with a disability, according to the Centers for Disease Control and Prevention. Nearly three-quarters of Americans with disabilities live with a family caregiver, and about one-quarter of those caregivers are 60 or older, according to the Center on Developmental Disabilities at the University of Kansas.


But only about half of families that care for a loved one with disabilities have made plans for the future, and an even smaller portion have revisited those plans to ensure they’re up to date, said Meghan Burke, an associate professor of special education at the University of Illinois in Urbana-Champaign.


“Engaging in it once is good, right? But you can’t only engage in it once,” she said. “It’s a living document, because things change, people change, circumstances change.”


Continued

Sick Profit: Investigating Private Equity’s Stealthy Takeover of Health Care Across Cities and Specialties

By Fred Schulte, Kaiser Health News, November 14, 2022  


Two-year-old Zion Gastelum died just days after dentists performed root canals and put crowns on six baby teeth at a clinic affiliated with a private equity firm.


His parents sued the Kool Smiles dental clinic in Yuma, Arizona, and its private equity investor, FFL Partners. They argued the procedures were done needlessly, in keeping with a corporate strategy to maximize profits by overtreating kids from lower-income families enrolled in Medicaid. Zion died after being diagnosed with “brain damage caused by a lack of oxygen,” according to the lawsuit.


Kool Smiles “overtreats, underperforms and overbills,” the family alleged in the suit, which was settled last year under confidential terms. FFL Partners and Kool Smiles had no comment but denied liability in court filings.


Private equity is rapidly moving to reshape health care in America, coming off a banner year in 2021, when the deep-pocketed firms plowed $206 billion into more than 1,400 health care acquisitions, according to industry tracker PitchBook.


Seeking quick returns, these investors are buying into eye care clinics, dental management chains, physician practices, hospices, pet care providers, and thousands of other companies that render medical care nearly from cradle to grave. Private equity-backed groups have even set up special “obstetric emergency departments” at some hospitals, which can charge expectant mothers hundreds of dollars extra for routine perinatal care.


As private equity extends its reach into health care, evidence is mounting that the penetration has led to higher prices and diminished quality of care, a KHN investigation has found. KHN found that companies owned or managed by private equity firms have agreed to pay fines of more than $500 million since 2014 to settle at least 34 lawsuits filed under the False Claims Act, a federal law that punishes false billing submissions to the federal government with fines. Most of the time, the private equity owners have avoided liability.

New research by the University of California-Berkeley has identified “hot spots” where private equity firms have quietly moved from having a small foothold to controlling more than two-thirds of the market for physician services such as anesthesiology and gastroenterology in 2021. And KHN found that in San Antonio, more than two dozen gastroenterology offices are controlled by a private equity-backed group that billed a patient $1,100 for her share of a colonoscopy charge — about three times what she paid in another state.

It’s not just prices that are drawing scrutiny.


Whistleblowers and injured patients are turning to the courts to press allegations of misconduct or other improper business dealings. The lawsuits allege that some private equity firms, or companies they invested in, have boosted the bottom line by violating federal false claims and anti-kickback laws or through other profit-boosting strategies that could harm patients.


“Their model is to deliver short-term financial goals and in order to do that you have to cut corners,” said Mary Inman, an attorney who represents whistleblowers.


Federal regulators, meanwhile, are almost blind to the incursion, since private equity typically acquires practices and hospitals below the regulatory radar. KHN found that more than 90% of private equity takeovers or investments fall below the $101 million threshold that triggers an antitrust review by the Federal Trade Commission and the U.S. Justice Department.


Continued

Keeping Informed - Knowing What "They" Are Saying:

This week, we are presenting a few articles that we would like to make sure our members have a chance to read in order to attain a broader understanding of what is going on in the world of disability rights.


We don't always preach to the choir. Sometimes, we have to make sure that the members of our choir know what others might be preaching to their choirs.


We would like to thank Kit Brewer for opening his facility to the reporters from ProPublica in hopes of showing the reporter the positive side of sheltered workshops and 14c programs, and attempting to dispel some of the pre-conceived notions in this piece.

Missouri Allows Some Disabled Workers to Earn Less Than $1 an Hour. The State Says It’s Fine If That Never Changes.

By Madison Hopkins, The Kansas City Beacon and ProPublica, November 15, 2022


One weekday morning in July, Kerstie Bramlet was at her workstation inside the Warren County Sheltered Workshop near St. Louis, Missouri, putting plastic labels on rabbit-meat dog chews one by one.


The 30-year-old, who wore a St. Louis Cardinals shirt and a blue-and-white tie-dye hat, is autistic and has intellectual disabilities. She was on dog-chew assignment that day with a dozen or so coworkers, who are also disabled. As they chatted excitedly about an upcoming bocce ball tournament — part of a local Special Olympics event — Bramlet and her coworkers formed an assembly line of sorts, some counting the dog chews using a gridded piece of paper to ensure they reached the right total before handing them off to a supervisor for shrink-wrapping.


Eventually, a six-pack of the dog chews would be sold on Amazon for $14.99.


For this work, Bramlet earns $1.50 an hour. It’s legal to pay her such a low rate because she works at what is known as a sheltered workshop, which can pay subminimum wages to disabled workers like her under a federal law enacted more than 80 years ago. At that rate, if Bramlet kept a full-time schedule working 40 hours a week and took no time off, she’d earn $3,120 a year, less than a quarter of the federal poverty level.


By design, employment in sheltered workshops is supposed to be a temporary measure — a training process to allow disabled adults to transition into the regular workforce.


But Bramlet, who lives with her 49-year-old mother, has been working at the Warren County Sheltered Workshop off and on since 2014, and her long tenure is not uncommon in Missouri.


An investigation by The Kansas City Beacon and ProPublica found that, as of June 30, the vast majority of the more than 5,000 disabled adults employed at Missouri’s 97 sheltered workshop locations have been there for years. The news organizations’ analysis of employment data shows that nearly 45% of the employees have worked at the facilities for at least a decade, and 20% have been there for two decades. The longest-serving employee has stayed for more than 50 years.


“Missouri’s program was not built as a rehabilitation program,” said Dan Gier, sheltered workshop director at the Missouri Department of Elementary and Secondary Education.


“It was designed [as] an employment program to allow the disabled adults in Missouri to work that would have not succeeded anywhere else.”


Missouri is an outlier: At least 14 states have adopted laws or policies that completely phase out sheltered workshops or subminimum wages. At least 10 others have considered similar actions in recent years. This shift has come on the heels of a number of studies showing that sheltered workshops across the country were failing to live up to their goal, including a 2001 estimate by the Government Accountability Office that no more than 5% of employees were transitioning into the regular workforce.


Amid growing calls to eliminate subminimum wages at the federal level, Missouri instead deepened its commitment to sheltered workshops last year. Currently, the U.S. Department of Labor is the only agency empowered to issue certificates that allow the facilities to pay below the minimum wage. In July 2021, Missouri lawmakers passed a measure to develop the state’s own system of issuing the certificates, in case the federal government stops issuing them — a move that experts say no other state has taken.


State Sen. Bill White, a Republican who was one of the measure’s key supporters, said falling in line with other states to phase out sheltered workshops in Missouri would be a mistake.


“This wonderful idea that we’re going to put everybody in the mainstream and everybody will be able to participate and function perfectly in this economy isn’t true,” White said. “They’re just not as able to be as fast, as productive and as efficient.”


Read the full article here

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.

VOR Bill Watch:

[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. 1544Accelerating 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.

Help Us Help:
Shop at Amazon?

Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to smile.amazon.com instead of the regular Amazon site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.

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?

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