January 13, 2023

"Of all the forms of inequality, injustice in health care is the most shocking and inhumane." - Rev. Dr. Martin Luther King Jr.

Monday, January 16, 2023

Dr. Martin Luther King, Jr. Day

We would like to consider this day not as a holiday, but as a day of service;

a day to give something of yourself to others who may be in need;

a day to give a voice to those who cannot speak for themselves.

VOR's January Networking Meeting

Tuesday, January 24

4 pm Eastern, 3 pm Central, 2 pm Mountain, 1 pm Pacific

We invite you to join us on Zoom to meet with like-minded advocates and families of individuals with I/DD and autism.

Our topic this month will be a look at the

118th Congress

and the issues that we may be bringing to their attention in coming session.

The forum will be moderated by Roslyn Leehey. and feature a presentation from Gayle Gerdes of Health Policy Solutions and

VOR's President Joanne St. Amand & Executive Director Hugo Dwyer

To register, please write to

[email protected]

with the subject line "Networking Meeting"

Note: While many of VOR's members are concerned about the state of intermediate care facilities in the U.S., we often include articles on other forms residential treatment options, including HCBS group homes and at-home services, Skilled Nursing Facilities, and nursing homes. While often serving very different types of clientele with very different needs and levels of need, all of these services are funded and overseen in part by CMS, and all of these services are facing similar challenges stemming from the shortage of a well-paid, well-trained work force.

As Dr. King said, "Whatever affects one directly, affects all indirectly."

80% of Nursing Home Providers ‘Very Concerned’ About Possible Federal Staffing Mandate

By Zahida Siddiqi, Skilled Nursing News, January 10, 2023

A vast majority of nursing homes favor extending the public health emergency designation for Covid, and are concerned that they will be unable to meet a potential federal staffing minimum. 

These views, expressed in a newly released survey by the American Health Care Association/National Center for Assisted Living (AHCA/NCAL), come in the midst of a labor shortage despite widespread wage increases and hiring of temporary workers.

AHCA’s survey shows that about 80% of nursing homes are very concerned that they will be unable to meet a potential federal staffing minimum of 4.1 hours per resident day (HPRD) due to a labor shortage, rising inflation and higher operating costs. 

Key findings of the latest AHCA survey include:

• 191,000 nurses and nurse aides were needed at the annual cost of $11.3 billion in order for nursing homes to meet a staffing minimum of 4.1 HPRD.
• 84% of nursing homes are currently facing moderate to high levels of staffing shortages.
• 96% of nursing homes find difficulty in hiring staff.
• 97% said the lack of interested or qualified candidates is a major obstacle to hiring new staff.
• More than nine out of 10 nursing home providers have increased wages and offered bonuses to try to recruit and retain staff.
• To adjust for staffing shortages, 78% have hired temporary agency staff.

AHCA represents more than 14,000 nursing homes and other long term care facilities across the country.

Read the full article here 

Download the AHCA survey here

New Requirements in the Home and Community Based Services Final Rule set for Full Implementation by March 17, 2023

The updated rule is to be fully implemented in all HCBS settings by March 17th. For more information on the changes in the HCBS Settings Rule, and the rights of HCBS Waiver participants and their families, please go to this page on the CMS Website or download the HCBS Settings Rule PDF here

IRS Increases Limit For ABLE Accounts

By Michelle Diament, Disability Scoop, January 9, 2023

People with disabilities can save more money without jeopardizing eligibility for government benefits thanks to a change in tax rules for the new year.

Starting this month, the federal gift tax exclusion increases from $16,000 to $17,000 annually, according to the Internal Revenue Service. The deposit limit for ABLE accounts — a savings vehicle for people with disabilities — is tied to that metric, so it will grow as well.

The rise is the result of inflation and follows a similar uptick in the maximum allowable ABLE account contribution last year.

Created under a 2014 federal law, ABLE accounts allow people with disabilities to save up to $100,000 without forgoing eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much is in the accounts.

Funds saved in the special accounts can be used to pay for qualified disability expenses including education, health care, transportation and housing. Interest earned is tax-free.

Annual ABLE account deposits are generally capped at the value of the IRS’ gift tax exclusion. But, people with disabilities who are employed can save some of their earnings in addition to the gift tax amount of $17,000.

For this year, workers with disabilities in the 48 contiguous states will be able to save $13,590 more that the gift tax exclusion while Alaska residents can accrue an additional $16,990 in compensation and $15,630 for those in Hawaii, according to the Autism Society.

ABLE accounts are offered through programs in 47 states, many of which are open to individuals nationwide if they have a disability that onset before age 26. Starting in 2026, that age limit will rise to 46 under a recently passed law.

Read the full article here

Fighting Censorship in Autism Discourse

Why we need more words to describe autism, not fewer.

By Amy S. F. Lutz, Psychology Today, January 10, 2023

My son Jonah, who turned 24 yesterday, is severely autistic. He suffers from several comorbid conditions, as well as extremely challenging behaviors that necessitated almost a year of inpatient treatment when he was 9 years old.

This is the thumbnail description I’ve used to describe my son for more than a decade. Efficient and accurate, it conveys a good sense of the level of Jonah’s impairment without going into some of the more disturbing details: scars, bruises, bite marks, broken windows. Holes in the drywall. Near fatal elopements into traffic.

Yet, according to language guides issued recently by neurodiversity advocates, this innocuous and fairly sanitized description is “ableist” “derogatory” and “dehumanizing,” because it uses several words they demand be stripped from research and clinical discourse: severe, suffers, comorbid, challenging, treatment. The only unobjectionable part of those two sentences is Jonah’s age—which tells you virtually nothing about his life, or ours.

Please read the full editorial here

Ellie's parents used to spend up to 10 hours a day trying to stop her from injuring herself, holding her down and even turning to sedatives and anti-psychotics. Now, they're able to spend time hiking and swimming with their daughter.

"We're able to take her out on hikes. We've got a swimming pool this year for Ellie and she's been out there all summer long. She loves going to the pool and it's just opened up our lives and more things that she can do and that we can do," Tomljanovic said.

The treatment works by sending a small electrical current to override the circuits or regions in the brain that doctors think aren't working properly. Doctors had to implant two electrodes into her brain, connected to wires under the skin to a battery. In October, her battery was replaced with a rechargeable one that attaches to a custom vest made by a local seamstress.

Continued

Low wages and high turnover are helping to fuel a staffing crisis among those who work with Pennsylvanians living with intellectual disabilities and autism, affecting the quality of care and support they receive, accordingly to newly released research.

That shortage has forced providers to contract out for services, further driving up costs, according to the Center for Healthcare Solutions, a western Pennsylvania-based industry trade group, which conducted the research on behalf of three advocacy organizations: The Arc of Pennsylvania, the Rehabilitation and Community Providers Association (RCPA), and The Provider Alliance (TPA).

Fifty-two organizations, “representing a full array of services” from every region across Pennsylvania participated in the survey, which collected data on pay practices, hourly wages (starting, average, and maximum), scheduled and filled positions, and employee separations, the trade group said in a statement.

The survey looked at 9,000 employees, working in 40 different positions, to evaluate wage compression issues, as well as critical data on over 7,000 direct support professionals (DSPs), residential supervisors, and other program supervisors. The report reflects salaries in effect as of Sept. 30 of last year.

The bottom line: “This is a system that is severely strained past its breaking point,” the trade group’s president and CEO, Nick Vizzoca, said in the statement. “There isn’t a single survey respondent that isn’t feeling the effects of this workforce shortage.”

According to the report, 14 percent of all direct-service providers’ hours are paid at overtime rates.

As a result, “providers must dig deeper to provide credentialing incentives, tenure rewards, or bonuses simply to retain the workers they have,” according to the report.

The wage study “reinforces what we have been saying for a long time now. Low wages are directly related to the high turnover and high vacancy rates that we’re seeing among Pennsylvania’s ID/A providers, and the individuals who are affected the most are those seeking care and support,” Richard Edley, the president and CEO of RCPA, said in the statement.

The 2022-23 state budget included $100 million in funding for mental health services. But lawmakers did not approve a plan to spend the money at the end of last year’s legislative session, which means the issue will carry over into the new legislative session that started this month.

Continued

Massachusetts - Seven Years after the Closure of his Sheltered Workshop, Mark Garrity is Still Waiting for Something to Replace it

By Dave Kassel, The COFAR Blog, January 12, 2023

It has always been his work that has motivated Mark Garrity, his sister Patty says.

When he participated in his sheltered workshop, Mark was productive and social. He derived meaning from the tasks he was given, and he had fun with his friends.

Mark, 52, who has an intellectual disability, doesn’t need or care about being paid a minimum wage for it, Patty says. What is important to him is completing an assigned task.

“If Mark sees a pen without a cap, he’ll put it on with a twist and be proud of it,” Patty says.

But since 2016, when all remaining sheltered workshops were closed in Massachusetts, Mark has faced a void as far as work is concerned.

Mark’s community-based day program is run by the Road to Responsibility (RTR), a provider to the Department of Developmental Services (DDS). The day program offers a cooking class in the kitchen, but that doesn’t interest Mark.

“He just stays in one room where he eats lunch,” Patty says. “When they took away his workshop, they took away his meaning. He’s not like you and me.”

In his sheltered workshop, Mark packaged and assembled things such as car door locks. He took pride in that work.

The purpose in closing the workshops, according to the successive administrations of then Governors Deval Patrick and Charlie Baker, was to place people with intellectual and developmental disabilities in mainstream or integrated work settings that pay at least minimum wage. But Patty says that approach doesn’t work for Mark.

“He can’t produce at the minimum wage level,” she said. And now with the minimum wage in Massachusetts having risen to $15 an hour, she says, it would be even more difficult to find a suitable job for Mark in the community.

Moreover, if Mark were to go off-site and into the community to work, he would need 1-to-1 staffing assistance, Patty said. His day program doesn’t have sufficient staffing for that.

Continued

Barb Stuckey lived her worst nightmare when her daughter Jessica Stuckey, who lives with a genetic chromosomal abnormality called Smith-Magenis Syndrome, was sent to Pine Grove Correctional Facility.

“Terrified. I didn’t know if she was going to get beat up, or worse,” Barb told CTV News in an interview.

Barb said the 24-year-old has lived on her own in Melville since 2018, with the help of community support programs, but when the pandemic hit, those resources moved online.

Jessica’s lawyer, Deanna Harris with Legal Aid Saskatchewan, said Jessica needed human connection, so she started calling the police multiple times a day.

“Even-though people would tell Jessica she isn’t allowed to call police unless it was an emergency, she still persisted on calling, because the police were respectful to her,” Harris told CTV News in an interview.

She said Jessica made threats that she didn’t mean. Harris said her behaviour escalated when her mental health support workers told her there was no funding to send her to a support program in Regina.

Jessica threatened to kill her support workers and was charged with two counts of uttering threats and mischief over $5,000 for misusing public resources.

“I truly didn’t believe she would end up with criminal charges, being a criminal, for something she cannot help,” Barb said.

“Mentally she did not develop past the age of six or seven,” Harris said.

“Essentially a child put into the adult correctional system.”

At a hearing in Yorkton, Jessica was denied bail and sent for psychiatric assessment, but the beds in the nearest psychiatric hospital were full.

Jessica was sent to a remand centre in Prince Albert, which raised concerns from inmates and staff at the facility, according to advocate Sherri Maier.

Maier is the founder of Beyond Prison Walls Canada and often communicates with the inmates at Pine Grove.

“They saw the fear in her.”

“They all just came together, this like a kid in jail, she doesn’t belong here,” Maier told CTV News.

Continued

New York - Parents of Children with Severe Disabilities to have More Say in Operations of NYC Public Schools

By Cayla Bamberger, New York Daily News, January 9, 2023

A new election season for local and citywide education councils kicked off Monday with a significant change that opens the door to greater participation from parents of children with severe disabilities.

Those parents, whose children attend schools known collectively as District 75, can now apply not only for citywide but also local education councils. The change was mandated by the state Legislature as part of the latest extension of mayoral control over city schools.

District 75 is a network of public schools for roughly 26,000 students with complex disabilities, including severe autism or physical and developmental disabilities like traumatic brain injuries or cerebral palsy. While its programs may serve as a lifeline for students who need specialized attention, the district often serves as little more than a holding ground for more than 8,000 kids with emotional disabilities, interviews with multiple current and former district families and staffers revealed this summer.

Graduation rates for students in District 75 are abysmally low — fewer than one in 10 children obtain a diploma within six years, compared with more than half of all city public school students with disabilities, according to fiscal watchdog the Independent Budget Office.

“This change ensures that the voice of the families of students with disabilities is heard on all of our local councils,” said Schools Chancellor David Banks at a press conference Monday at the public school headquarters in Tweed Courthouse.

Continued

Displayed on the wall in a corner behind the shelves of books were works of art - pictures that until recently were still being created by that very group from Batavia-based Valley Sheltered Workshop.

The display had been arranged as a surprise, explained Kristen Zambo, promotions service manager at the library, for the workshop members who thought they were just taking a tour of the library.

“They didn’t know they were going to be displayed,” Zambo said.

It gave Hugo Saltijeral, sheltered workshop executive director, a chance to congratulate the members and explain to them what it means.

“You are, what do they call it, on exhibit,” Saltijeral said. “You’re exhibitors now.”

It made for a fun outing for the workers, er, exhibitors who come to the Valley Sheltered Workshop for a combination of a job, some socialization and some just plain fun.

“They’re not coming in for just a paycheck, it’s to have to have and enhance - the same as you or I - a purpose,” Saltijeral said.

Valley Sheltered Workshop has been providing that place to people with disabilities since 1966, when it was established by the Rev. Gilbert Johnstone.

Currently, it serves 21 people primarily from the Tri-Cities, although it also includes North Aurora, Elburn, Sugar Grove and even Elgin. It is one of 114 sheltered workshops serving about 11,000 people throughout Illinois, but it is one of the few entirely funded through private donations, without any government help.

Continued

California Offers Paid Training and Self-Care to Attract In-Home Caregivers

By Laurie Udesky, Kaiser Health News, December 9, 2022

One November afternoon, Chris Espedal asked a group of caregivers — all of whom work with people who have cognitive impairments, behavioral health issues, or complex physical needs — to describe what happens when their work becomes too much to bear. The participants, 13 caregivers from all over California, who had gathered in a Zoom room, said they experienced nausea, anxiety, shortness of breath, elevated heart rates, and other telltale signs of stress.

“I want to scream!” one called out. “I feel exhausted,” said another.

Espedal, who has been training caregivers for 18 years, guided the class through a self-soothing exercise: “Breathe in for four counts, hold the breath for four, exhale for four.” She taught them to carve out time for themselves, such as setting the goal of reading a book from beginning to end, and reminded everyone to eat, sleep, and exercise. “Do not be afraid to ask for help,” Espedal said. She added that one of the best ways they can care for their clients — often a loved one — was to care for themselves.

The class is a little touchy-feely. But it’s one of many offerings from the California Department of Social Services that the agency says is necessary for attracting and retaining caregivers in a state-funded assistance program that helps 650,000 low-income people who are older or disabled age in place,

usually at home. As part of the $295 million initiative, officials said, thousands of classes, both online and in-person, will begin rolling out in January, focused on dozens of topics, including dementia care, first-aid training, medication management, fall prevention, and self-care. Caregivers will be paid for the time they spend developing skills.

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.

Currently there are no bills in Congress for us to support or oppose.

(Currently, there is no congress, per se)

Please watch this space for information as bills affecting people with I/DD and autism are introduced.

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

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