February 10, 2023

Happy Valentine's Day from VOR!

We have put up a VOR Valentines post on our Facebook Page for all our families and friends to post a loving thought to their family member with I/DD, a special caregiver or DSP, or whoever you can think of, with whom you would like to share a Valentine's wish or expression of gratitude.

It you would like to post a picture, you may send it to our wonderful Secretary, Rita Winkeler, at [email protected], and she will post it on our website.

So please, join us in spreading a little warmth in this Frosty February!

One of VOR's long-time members sent this article this week. It shows a different culture, a different sensibility. Food for thought

Another Way to Say Thank You

Have you thought about maybe making a recurring donation to VOR?

Many folks have found that recurring donations are an easier, more budget-friendly way to contribute.

May we suggest $19 per month?



We don't know why, but that seems to be the popular amount that many charitable organizations suggest. No matter; we are grateful for any gifts we may receive, be they recurring, annual, spur-of-the-moment, or in gratitude for past benefits or paying it forward for the future.

Big Changes Coming To Medicaid, Disability Services As Public Health Emergency Ends

By Michelle Diament, Disability Scoop, February 6, 2023

With the Biden administration planning to soon end the emergency status prompted by the pandemic, advocates are warning that the shift will have major implications for people with disabilities that go far beyond COVID-19.

Under the public health emergency, which has been in place since 2020, states have been eligible for extra federal funding for Medicaid in exchange for agreeing not to drop most beneficiaries from the program. The federal government has also given home and community-based services providers added flexibilities as they work to maintain staffing.

But now the White House says that it intends to extend the public health emergency to May 11, at which point it will end.

The change will trigger a massive effort by Medicaid programs nationwide to re-evaluate each beneficiary to determine whether or not they remain eligible. That has advocates worried that some people with developmental disabilities could be inadvertently dropped from the program even if they still qualify.

“It’s vital that people with disabilities and their families make sure they respond to any mail or email from their Medicaid office, that their address is up to date with the state, and that they are in compliance with the financial eligibility rules under Medicaid,” said David Goldfarb, director of policy at The Arc.

States can start the redetermination process as soon as this month and can terminate Medicaid coverage for individuals as early as April 1. Across the country, the process is expected to be complete no later than May 2024.

“States have a massive undertaking before them with an estimated 90.9 million individuals on the program,” Goldfarb said. “There is a lot of uncertainty about how prepared states are to undertake this process.”

Aside from its impact on Medicaid eligibility, the public health emergency has also offered disability service providers additional regulatory wiggle room, advocates note.

“Many providers have become reliant on the use of Appendix Ks which provide flexibilities like expanded service settings and the ability to provide temporary direct support wage increases and pay family caregivers,” said Elise Aguilar, director of federal relations at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation.

An ANCOR survey of providers last fall found that 66% are concerned that the loss of COVID-19 relief funding and regulatory changes when the public health emergency ends will lead to higher vacancy and turnover rates in their workforce.

“That in turn could lead to additional closures and discontinuations of programs and services offered,” Aguilar said.

Read the full article here

During the speech this week, Biden called on Congress to invest in services that allow people with disabilities to receive care in their homes.

“Let’s get seniors who want to stay in their homes the care they need to do so. Let’s give more breathing room to millions of family caregivers looking after their loved ones,” Biden said. “Pass my plan so we get seniors and people with disabilities the home care services they need and support the workers who are doing God’s work.”

The comments come nearly two years after Biden proposed spending $400 billion on Medicaid home and community-based services with an eye toward expanding access to those currently on waiting lists and strengthening the workforce of direct support professionals.

The U.S. House of Representatives approved a scaled-down version of Biden’s plan with $150 billion for the program in late 2021, but the funding never made it to a vote in the Senate.

Last month, a group of federal lawmakers sought to revive the proposal by introducing a bill known as the “Better Care Better Jobs Act” that would provide states the opportunity for a permanent 10 percentage point increase in federal Medicaid matching funds for home and community-based services.

The push to invest in home and community-based services comes as disability service providers continue to struggle to attract and retain direct support professionals, a challenge exacerbated by the COVID-19 pandemic. A survey last fall of providers nationwide found that the vast majority are turning away new referrals and have discontinued programs and services.

Continued

VOR has serious concerns about the Better Care Better Jobs Act, recently entered in the Senate by Bob Casey (D-PA) and cosponsored by 39 Senate Democrats.

While we support increasing funding for people with I/DD and autism, VOR believes that all people receiving long-term services and supports through CMS deserve to be included in this bill, not only those who receive their care through the HCBS waiver. By addressing the needs of only some members of the ID/A community, President Biden and the Senate Democrats are ignoring, even marginalizing, those with more severe intellectual disabilities.

Furthermore, by increasing salary levels and training only for caregivers who work in HCBS settings, the supporters of this bill are overlooking a signiificant part of the DSP workforce - those who care for the most severely challenged, the most vulnerable, and those with the most extreme behavioral disorders. These caregivers deserve to be rewarded for their work commensurate to the higher challenges they face and the higher levels of training required in their settings. Instead, they are being left out of the Better Care Better Jobs Act. This oversight may have a disastrous impact on the ability of providers in private ICFs and other facilities to staff their operations and to continue to serve those who rely on these higher levels of care. (See the article "Staffing Shortage Takes a Toll" below)

Finally, the Better Care Better Jobs Act calls for a permanent authorization of the Money Follows the Person Rebalancing Program (MFP), which was designed as a way to achieve a balance between institutional care and HCBS waiver programs. We contend that this imbalance has been addressed, and even surpassed. We believe that MFP needs to be re-evaluated, and that some of its many shortcomings need to be addressed. We believe permanent re-authorization will perpetuate these failings.

“Since 2020, our world has changed as the inability to find staff to work in our programs has driven us to make decisions we never thought we would have to make and put us in a position we never expected to be in,” said Timothy Neville, Echoing Hills CEO and President, in a letter to the Director of the Ohio Department of Disabilities on behalf of the ICF Direct Care Coalition. “Throughout these many years, we have survived the ups and downs of government funding and economic cycles, always operating on thin margins but keeping our heads above water with pride in the services provided.”

Neville continued the letter by stating, “With over 760 direct support staff openings today even after our service reductions, we cannot safely provide services to fill existing bed vacancies let alone bring beds back in service. Freezing admissions has become commonplace.”

Traditional statistics no longer capture the level of the staffing crisis, Neville explained.

“This is heartbreaking as we daily hear the voices of the over 330 people on our ICF waiting lists, and the 460 additional inquiries we get a month from desperate families or service coordinators looking for ICF services.”

The DSPs working at Flat Rock Homes depend on Medicare rates to fund all areas of care, which are no longer competitive. Starting rates at Flat Rock Homes are around $14-15 an hour, causing Flat Rock to have a difficult time finding and keeping essential caregivers. DSPs provide services to residents by directly taking care of them and aiding them with their daily activities. They are trained through Flat Rock Homes services upon hiring, where they also become CPR certified. Those hired must obtain a high school diploma or GED as well as pass a background check.

“Many of us have used donated funds and other one-time money to increase our starting wages in some cases as much as 45%, yet we still do not have staffing levels to a point where our systems have stabilized,” Neville said.

“The answer to this crisis is not better training, better staff support, better trained supervisory staff, or better recruiting techniques,” he continued. “Without a significant infusion of money that gets us competitive with other starting wages, we will never find the staff to meet the ever-increasing needs of those we currently serve, not to mention those families and individuals in desperate need of services on our waiting lists. Excellent training programs are worthless if we cannot get people in the door to be trained; and if we are so short-staffed, we cannot spare existing staff the time to train.”

“The fear is not for our agencies, rather the fear is for those vulnerable Ohioans and their families who depend on us for services today and into the future,” said Neville.

A member of the Intermediate Care Facility Advocacy Group, Jill Kinser, explained the group aims to create awareness of this growing issue. However, she said even with hosting fundraisers and receiving donations, it has not been enough to fund the necessary services the care facility needs to operate.

Kinser is also part of the Flat Rock Homes Development Team.

“Most of them are unable to be at home,” Kinser said of the residents that rely on the ICFs services. “There’s extensive medical conditions, or sometimes behavioral condition issues.”

Flat Rock Homes currently has 36 beds where they serve 34 individuals, some of who have lived at the facility since they were children. Additionally, the home has two respite beds and 10 Community Group Homes serving even more consumers. Flat Rock Homes also serves individuals through their Vocational Day Support workshops and Employment Services Programs.

“In a nutshell, residents in ICFs need a great deal of care, attention and compassion to experience their lives in the most fulfilling way possible,” Kinser said. “We work very hard to recruit and train DSPs to do this difficult work, which can be emotionally and physically demanding.”

“It is time for the State of Ohio to adjust their DSP pay rates to a rate that will attract and maintain the necessary staffing levels for this essential job,” Kinser continued, adding that residents depend on DSPs to take care of them with 24/7 supervision. “The rate has not increased in proportion with the world we live in.”

“We really want the public to know the value of it,” Kinser said of Flat Rock Homes, adding that they are looking for consideration and funding. “It’s life-changing, it does so much for the individuals there that can’t be done elsewhere.”

“It’s the ideal place for many residents,” she continued. “It’s a great combination of home and qualified care. These really are wonderful facilities, they’re led by caring people and we try to get the best help, but it’s been difficult to keep these people.”

Kinser said she encourages members of the community to inform themselves of what Intermediate Care Facilities do and how they affect people and reach out to Ohio Legislators.

Read the full article here

West Virginia - Bill Creating Group Studying IDD in Criminal Justice System Passes W.Va. Senate

By Steven Allen Adams, The Weirton Daily Times, February 7, 2023

The West Virginia Senate passed a bill Monday that would help devise ways to divert people with intellectual and developmental disabilities away from prisons and state hospitals.

The state Senate voted 33-0 to pass Senate Bill 232, creating a study group to make recommendations regarding diversion of persons with disabilities from the criminal justice system. The bill now heads to the House of Delegates.

SB 232 would create a multi-disciplinary study group to make recommendations regarding the diversion of persons with intellectual and developmental disabilities in the state’s prisons, jails, and court-ordered placement in the state’s psychiatric hospitals.

The study group would develop placement recommendations for inmates and persons with IDD. The bill also requires development of a plan to coordinate care, treatment, and placement for persons with IDD in the criminal justice system and in the community.

“The Legislature … finds that persons with mental illness, developmental disabilities, and/or substance use disorder may be overrepresented in the criminal justice system, and many of these people might not present a danger to the public if they could participate in a functioning community behavioral health continuum of care,” according to the bill’s text.

The bill requires the chairperson of the Dangerousness Assessment Advisory Board – a board within the state Department of Health and Human Resources that provides guidance and expertise to the judicial system on custody and supervision of people judicially determined to be incompetent to stand trial – to convene the study group created by SB 232.

“It is, I think, an important bill,” said Senate Judiciary Committee Chairman Charles Trump, R-Morgan, the lead sponsor of the bill. “This is the next step in the process of utilizing that Dangerousness Assessment Advisory Board.

“We’ve received information … that we have people institutionalized who are not dangerous. That should not be,” Trump continued. “We have a process for civil commitments, and the elements are they have mental illness or addiction and as a result of that are immediately dangerous to self or others. Those are the limits around when people can and should be committed against their will and placed in a psychiatric hospital or facility.”

Continued

Her first thought was one of relief: Maybe her son, Rory, had been released from the Harris County Jail. Maybe he was finally ready to come home after a decade on the streets.

Maybe this time he would take the medications to regulate his bipolar and schizophrenia disorders.

But as the longtime teacher listened to the messages left on that gloomy day in May 2021, each more frantic than the last, panic set in.

“There’s been a fight at the jail…”

“Rory Ward was transported to Ben Taub Hospital earlier today…”

“…found unresponsive…”

“Contact us as soon as possible.”

Rowena struggled to breathe. She felt like she was underwater, the words floating in and out of her grasp.

Rory – her handsome, eldest son who loved Disney World and doodled on every blank surface he could get his hands on – never woke up. He died the next day. Medical examiners eventually ruled it a homicide.

He was 33 years old.

Rory’s death highlights the devastating impact that decades of underfunding has on community mental health programs meant to keep people rooted in their communities while still providing therapeutic services, medication management and crisis mental health care. In the absence of adequate psychiatric services in the community, Texans with mental illnesses like Rory often end up homeless, interacting with law enforcement and languishing in emergency rooms or jails.

Now, the state’s network of county jails is the largest mental health system in Texas, according to the Texas Association of Counties.

“The holes in the community are big and gaping when you look at access to mental health,” said Lt. Scott Soland with the Fort Bend County Sheriff’s Office. “A lot of people typically get mental care when they wind up in the criminal justice system or family members force them.”

The Houston Landing examined thousands of public records to determine how many people who died from homicides, suicides and other unnatural causes in the custody of county and municipal jails across the greater Houston area over the last decade had previously exhibited mental health symptoms that were documented by court, jail or law enforcement personnel.

The Landing created its own database from court documents, custodial death reports and police and jail records. The investigation found that about 46 percent of the 114 individuals who died of unnatural causes in the custody of these jails had been flagged as potentially mentally ill at least once since the 1980s.

A total of 52 people died. Five others with documented mental health concerns in the eight-county region died of unnatural causes in jail custody during this timeframe, but cause of death still was being investigated by the time of publication.

Continued

Before his mother Shahna Stout enters, she puts up her hair, takes off her glasses and stows her phone so he can’t grab them.

She and CJ’s legal guardian, Austyn Mahon, call gently and repeatedly to wake him. It's about 11:30 a.m.

Eventually, CJ sits up, groggy, a single sheet and a thin blanket twisted around his waist. His mom and Mahon reach toward the dark red stretch marks near his armpits. They hadn’t noticed them appearing so angry before.

He’s gained about a third of his body weight in the eight months since being brought to Renown, in part due to psychiatric meds he’s on.

On the night of May 2, 2022, Reno police took CJ to the hospital after responding to a 911 call about an attack that left CJ's mother and big sister, Mechayla, bruised and bitten.

“I'm terrified of my son,” Stout said later in a second floor waiting area at Renown. “The night everything went bad back in May, I had to call the cops on my own child because he was hurting me. He was hurting me.”

Her voice is filled with anguish. She is a mother who doesn't know how to help her son.

CJ has severe autism. His mental age is that of a 3-year-old, and he suffers from seizures. He also loves dinosaurs and spaceships.

Since turning 19, CJ has become more aggressive. He sometimes grabs things forcefully, including people.

Mahon and Stout suspect schizophrenia might also be an issue. It often manifests at this age – and it runs in the family. While she was being attacked, Stout said, CJ’s eyes had a strange smiling look, like he was hearing voices or seeing visions.

"Renown has said that any testing for schizophrenia would have to be done after he left the hospital," she said.

Although Renown says CJ’s behavior is improving, Mahon and CJ’s family worry he’s not getting enough social and mental stimulation and rarely leaves his room.

Signs of CJ’s agitation are all over. Smears of dried feces mark the walls, the windowsill, the window, the bathroom’s grab handles and the shower stall.

No one thinks Renown is the right long-term location, but the hurdles to reaching a good outcome for CJ are many:

• Renown is an acute-care hospital. It treats people who are sick or injured. CJ is neither, and it doesn’t have the trained staff or other resources to appropriately care for CJ, yet Renown doesn't feel it can ethically release him because he has nowhere else to go.
• The state of Nevada, which is charged with being a safety net for people like CJ, says there are “unprecedented staffing vacancies” with service providers that deliver around-the-clock care at group homes. The same situation is hitting communities across the nation. Efforts to find CJ a home anywhere – even outside Nevada – have been ongoing for months without success.
• Reno’s affordable housing shortage plays a part, too. Even when service providers can find enough staff, they often can’t find houses that would work as group homes for people with disabilities.

CJ’s court-appointed attorney, Dave Spitzer of Northern Nevada Legal Aid, calls Nevada a “resource desert” for services that help people like CJ.

“Nevada hasn't been able to attract them to our state in a way that allows people to be placed," he said, "especially in Northern Nevada."

All this means the best outcome – maybe the only outcome – will be that CJ is placed in a group home far away from the people who love him.

Continued

New Jersey Group Homes have a Staffing Crisis. Can Cameras and 'Remote Care' Fill the Gaps?

By Gene Myers, North Jersey .com, February 9, 2023

Staff shortages continue to plague the companies charged with caring for some of New Jersey’s most medically fragile residents.

Known as direct support professionals, the aides employed by those companies help make daily life possible for roughly 10,000 people with disabilities living in New Jersey's 2,200 group homes. Yet in a tight labor market, one in five DSP positions go unfilled and turnover is rampant, according to industry surveys.

Group home operators hope technology can ease the strain.

The Alliance for the Betterment of Citizens with Disabilities, a trade group representing 64 providers, has requested permission from New Jersey regulators to install a suite of smart technologies, including motion sensors, speakers, tablets and cameras, in combination with offsite monitoring to fill in the labor gaps at facilities around the state.

The devices are already in use in some homes, but the industry's "remote care" proposal would broadly scale up their implementation, having them replace hard-to-find human staff. Seventeen states have already approved similar pilot programs, according to the alliance, but New Jersey has yet to join them.

“It’s a bit of a sea change,” said ABCD Director Catherine Chin. “People will have to get used to it.”

The use of cameras and off-site monitors raises questions about privacy, safety and response times. Nonetheless, advocates for people with disabilities say they see a role for more technology, not only to help fill severe post-COVID staff shortages but also to grant some residents additional privacy and autonomy.

"Depending on the needs of the person, there is someone there who can get there in a couple of minutes or there would be someone who is a couple of miles away," said Mercedes Witowsky, executive director of the New Jersey Council on Developmental Disabilities. "It should be arranged based on the needs of the individual."

In Pennsylvania, group-home operator Community Options Inc. said it has seen positive results in five locations where it has installed cameras and other devices. Company staff members monitor the homes from afar, though some providers may contract with outside services to watch over the feeds.

"We had a couple of individuals where we were able to remove an overnight staff," said Svetlana Repic-Qira, an executive vice president at the Princeton-based company. "We have sensors on the doors to notify us when the door opens. We would be notified if a heat sensor went on, or if the stove went on."

Continued

New York - Commentary: Direct-Care Vacancies put Vulnerable New Yorkers at Risk

By State Senator John Mannion, Times Union, February 9, 2023

In her State of the State address last month, Gov. Kathy Hochul quoted the great Frances Perkins — the former New York labor commissioner under Gov. Franklin Delano Roosevelt who would serve in the same capacity during FDR’s presidency — stating, “A government should aim to give all the people under its jurisdiction the best possible life.”

To realize this goal we must address the crisis facing New Yorkers with intellectual and developmental disabilities (I/DD), their families, and those who care for them.

As a state senator and chairman of the Senate Committee on Disabilities, I understand our fundamental responsibility to work to improve the lives of those we represent — especially our most vulnerable populations.

Egregiously low wages and years of underfunding has left the I/DD care services system in crisis. According to a recent survey from the New York Disability Advocates, there are currently 19,788 vacant direct-care positions in New York state that the nonprofit sector has been unable to fill. That’s a staggering amount of vacancies for any sector, and especially significant for one that provides life-supporting care.

The I/DD community relies on direct-support professionals to provide important practical and personal support such as giving first aid and CPR, administering medication, preparing meals, and arranging transportation, as well as attending to the unique social, emotional, and psychological needs of those they care for. They are the essential pillars of the I/DD community, yet they are paid an hourly rate just above the state minimum wage. This is unacceptable and unsustainable.

Last year’s budget was a hopeful moment for the I/DD community: A 5.4 percent cost-of-living adjustment was the first significant investment for the I/DD service sector in over a decade, and a first step in resolving this crisis. With staff vacancy rates and turnover costs continuing to rise, it’s clear that last year’s investment alone is not enough.

Unfortunately, it does not seem like we are on track to continue addressing the crisis this year, either: The governor announced a 2.5 percent cost-of-living increase in her 2024 executive budget, which is simply not enough.

Permanent, long-term solutions are necessary to ensure a sustainable I/DD service sector in New York. That is why we must include a 8.5 percent cost-of-living increase and the creation of Direct Support Wage Enhancement in our upcoming one-house bill.

Wage enhancement would allot nonprofit provider agencies additional funding to enhance hourly wages for direct-support staff. This would allow nonprofit providers to offer competitive wages while also ensuring that direct-service providers are not forced to choose between supporting those who depend on them or sustaining themselves and their families.

Without state funding to offer more competitive wages against other labor sectors, nonprofit provider agencies cannot effectively recruit and retain staff. High turnover rates are costing the state’s nonprofit service provider agencies more than $100.5 million annually — a cost that erodes funding for other essential programs and services.

We must also ensure that nonprofit providers can continue to cover the operational costs of vital programs and services. Significant cost increases related to mandated fringe benefits, repairs and maintenance, utilities, food, supplies, transportation, and insurance have placed significant financial pressure on agencies over the past year.

Continued

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.

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

VOR SUPPORTS:

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

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

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.

VOR HAS CONCERNS WITH:

S.100 - Better Care Better Jobs Act

Sen. Bob Casey (D-PA) 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.

VOR supports increasing funding for people with I/DD, but we have concerns that this bill, in its 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.

VOR OPPOSES:

At this time, there are no bills which we outrightly oppose. Stay tuned.



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