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 |
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VOR's Legislative Initiative, 2022
Sunday, May 15, 2022
On Zoom
To be followed by Zoom meetings with Congressional Offices May 16 - 19
Registration starts soon!
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March is
Developmental Disabilities Awareness Month
This is a great time to spread awareness of your loved one, their disability, and the environment in which they live, learn, or work.
Please reach out to your elected officials and invite them to meet your family member with I/DD and tour the facility they call home, see them at school or in their day program, or visit the facility at which they work with the benefit of a 14(c) certificate.
If your elected officials aren't available this month, schedule a visit for the months ahead.
So many of our ICF campuses are at their prettiest in the months of May and June!
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VOR's Annual Meeting
Celebrate VOR's 39th Year of Family Advocacy
Sunday, June 12, 2022
On Zoom
Due to the ongoing Covid pandemic and the continued lock down of many congressional offices in Washington, D.C., we are holding our annual events online via Zoom again this year.
We ask members to please mark the dates in your calendars.
More information on how you may participate in these events will be coming soon.
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Special Olympics Calls Off World Winter Games In Russia
By Shaun Heasley, Disability Scoop, March 8, 2022
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Special Olympics is canceling its upcoming World Winter Games as a result of the Russian invasion of Ukraine.
The international competition was supposed to be held in Kazan, Russia in January 2023.
In light of the current situation, however, Special Olympics International said it could “no longer ensure the effectiveness of the World Winter Games in Kazan or the safety of our athletes and community.”
“The horrific violence in Ukraine, the extensive sanctions implemented by the international community, and the uncertainty and fear being
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experienced around the world make it impossible to proceed,” the organization said in a statement.
The event, which was known as the Special Olympics World Winter Games Kazan 2022, was initially postponed due to COVID-19. Organizers had said they expected 2,000 athletes with and without intellectual disabilities from more than 100 nations and 3,000 volunteers from around the globe to participate.
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NCD Report Finds a Return On Investment for offering Medicaid Dental Care for Adults with I/DD
National Council on Disability, Press Release, March 9, 2022
Today the National Council on Disability releases the results of a preliminary Medicaid study focused on that the costs and return on costs of offering basic dental benefits to adults with intellectual and developmental (I/DD).
This report was motivated by a central research question: should the Centers for Medicare and Medicaid Services require all state Medicaid agencies to implement Medicaid reimbursement and payment policies that promote access to dental care for adults with I/DD. Medicaid adult dental benefits vary widely by state and limited research exists on how the Medicaid program should best address oral health disparities for adults with I/DD.
"Given that dental health is a predicate for general health, and general health is a predicate for employment, education, and community life, we want to offer policymakers insights into how they can help improve oral health outcomes for people with I/DD," said Vice Chair Jim Brett, "With over a quarter of a million adults with I/DD who receive Medicaid living in states with either emergency-only or no dental coverage, and two-thirds of adults with I/DD on Medicaid living in states that have extensive benefits still not receiving basic dental care, this initial study begins an important examination of access barriers."
The report examined:
- The relationship between states’ Medicaid dental benefits and the receipt of basic dental care among adults with I/DD;
- The relationship between state waiver and receipt of dental care;
- Estimated cost and potential savings of implementing basic dental Medicaid benefits in states that do not currently offer it;
- How coordination between DD and Medicaid agencies can improve access to dental care; and
- Promising Medicaid-funded state and private strategies for expanding dental care for adults with I/DD.
Poor oral health often leads to chronic disease, it also increases the likelihood of experiencing poor physical health.
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Disability Advocates Want CDC To Reinstate Indoor Mask Guidelines
By Michelle Diament Disability Scoop, March 7, 2022
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Dozens of advocacy groups are calling for the Centers for Disease Control and Prevention to walk back major changes to its mask guidance arguing that the new recommendations are harmful to people with disabilities.
In a letter to CDC Director Rochelle Walensky late last week, over 100 groups and advocates asked the federal agency to again urge Americans to mask indoors in order to protect the most vulnerable.
Under the new recommendations, which are based on a revised set of metrics, the CDC says more than 90% of Americans live in areas with low or medium COVID-19 risk and can go mask-free in most circumstances.
By giving most Americans the green light to remove their masks, however, advocates say that the CDC is putting people with disabilities at risk.
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“Despite acknowledging that some disabled, chronically ill, immunocompromised, people of color, and older people require additional protections, the new guidance does not address the needs of disabled people and older adults — as well as children with and without disabilities under five who are still not eligible for vaccines,” reads the letter signed by the Autistic Self Advocacy Network, The Arc, the Bazelon Center for Mental Health Law, the National Council on Independent Living, the National Disability Rights Network and numerous other groups.
The relaxed mask recommendations come as the CDC just updated its guidance to add intellectual and developmental disabilities to a list of conditions putting people at greater risk of severe disease from COVID-19.
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Following Up On Recent News
Last week, we printed an article about Registered Nurses leaving the Health Care System:
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Odds of Nurse Flight Jump 50% in 10 Months
By Kimberly Marselas, McKnight's Long-Term Care News, March 1, 2022
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This week, another report was published showing Certified Nursing Assisants leaving the system as well. Meanwhile there is still a record shortage of Direct Support Professionals.
Low Wages, Low Respect: CNA Perceptions Fuel Staff Exodus
By Danielle Brown, McKnight's Long-Term Care News, March 8, 2022
Low wages and a lack of respect are the biggest reasons employers are having a hard time retaining and keeping nurses, according to a new industry survey.
The findings were released Friday by the National Association of Health Care Assistants and featured responses from nearly 650 nurses assistants regarding their biggest challenges at work. NAHCA is a professional association that represents more than 26,000 CNAs.
Low wages and benefits were the primary reason why certified nursing assistants left or considered leaving their jobs, and nearly 84% said it would take more money and better benefits for nursing homes to rehire them.
Burnout and lack of respect from leadership were the second and third reasons CNAs cited for leaving their current jobs.
The survey comes just days after President Joe Biden’s extensive nursing home reform initiative called for implementing a minimum staffing requirement and pushed for better access to training for nurses. (Click here for a link to last week's article)
Recent data has revealed that the number of employees in the long-term care industry is the lowest it’s been in 15 years at about 2.97 million overall workers. That’s the lowest since January 2007. Research has also shown that an increase in wages shouldn’t be the only solution providers should use to retain workers. Improving work environments and empowering employees should also be considered.
The NAHCA survey findings also showed that 35% of CNAs who worked either first, second, or third shift had cared for between 15 to 20 patients during their shifts over the last four weeks.
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Massachusetts - Marlboro Boy With Severe Autism Sees Life-Changing Improvements With Cannabis Treatment
By Lisa Hughes, WBZ CBS-TV, March 8, 2022
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For families of severely autistic children, finding a treatment plan can be a daunting and often delicate process. But now, some are turning to a controversial alternative – cannabis.Lizabeth Lane Morse of Marlboro says cannabis treatment for her autistic son, Mark has been life-changing.
Three years ago, Mark’s behaviors were taking over his life, said Lizabeth.
“He broke a window,” she explained. “He was breaking TVs left and right, putting his head through iPads.”
And then came the breaking point.
“Mark put his head through a fish tank. I’m talking half-inch thick, tempered glass,” Lizabeth said, recalling the terrifying incident. “There was just water pouring out. And there was fish just flowing and flopping all over the ground. It was a horrifying scene.”
Therapy intervention and medication were not working. That’s when she turned to cannabis.
The change was almost immediate.
“Within 10 days of starting cannabis therapy, Mark became verbal,” she recalled.
Those first words helped overcome a fear of going to bed. “He was able to tell me. He said it’s too dark in here, I’m scared.”
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And that led to other breakthroughs.
“To wait six years to hear your son say ‘I love you mom,’” Lizabeth said. “It was something I always knew, I knew that he loved me. But to hear him say it was great. It was a great feeling.”
Mark’s doctor, Benjamin Caplan is one of only a handful of doctors able to prescribe cannabis to children in Massachusetts. He said this really can open up new worlds.
“We can change their neurochemistry,” said Caplan. “The chemistry in their brain, so they can feel and communicate a little bit more like people who aren’t suffering from autism.”
Most prescriptions are a mix of cannabinoids THC and CBD. And unlike other medicines, they are all-natural.
“Is your child on Zoloft? Is your child on Adderall? Are we not calling those drugs? I think the judgment is in the eye of the beholder.”
As for Lizabeth, the results with Mark have given their family a bright future. “We do what works for our family. Nobody really knows his story. And nobody knows the challenges and the battles that we’ve been through.”
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Illinois - Advocates Want $246M for Developmental Disability Services in Illinois
By Mike Miletich, Heart of Illinois ABC, March 9, 2020
More than 28,000 people in Illinois receive some type of help for intellectual and developmental disabilities.
The state invested $170 million toward the services in the Fiscal Year 2022 budget, but Gov. J.B. Pritzker only proposed $94.8 million for next year.
Providers across Illinois appreciated the historic funding for their services last year after decades of underfunding. But they also argue lawmakers should approve a $246 million investment this spring.
Pritzker’s proposed budget calls for specific funding for rate increases for direct support professionals.
Yet, his plan would only cover a $1 wage increase for those workers. Many of the working-class people on the frontlines in this industry say they barely get by with the current wages. Worker pay also was an issue during budget negotiations last year.
Josh Evans, the president of the Illinois Association of Rehabilitation Facilities, says every agency in his network is dealing with the same problem right now - a massive worker shortage. Many are leaving the industry for less-demanding jobs with higher pay and better benefits.
Providers say direct support professionals should receive 150% of the state’s minimum wage. The decision could affect more than 30,000 direct support professionals and any future workers in the field.
“If we do not recruit and hire DSPs, train them, we will no longer have the supports needed to continue to support intellectual and developmental disabilities in the state of Illinois,” said Helen Blackburn, VRS executive director of Centerstone.
Blackburn started as a DSP in Southern Illinois 20 years ago. She said there was never a question of whether or not that could be a career. But with wages so low in 2022, Blackburn said it’s difficult for anyone to make ends meet.
Extended waiting lists
Still, another area of concern is the fact 14,000 people are still on a waiting list to receive these services. Blackburn explained without more workers, agencies can’t open more slots for people in need.
Pritzker’s budget proposal could help put nearly 700 people into less restrictive or community home settings. Still, Lacey Eaton with Transitions of Western Illinois says that is not nearly enough.
“It’s very difficult to look at these families who are desperate for help and say, ‘I’m sorry, it’s at least five to seven years before your loved one is going to have funding so they can get the services that they need,’” Eaton said.
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Colorado Violates Rights of People with Disabilities by Segregating them in Nursing Homes, DOJ Alleges
By Meg Wingerter, The Denver Post, March 3, 2022
Colorado isn’t doing enough to allow people with physical disabilities to live in the general community, effectively segregating them in nursing homes in violation of the Americans with Disabilities Act, according to the U.S. Department of Justice.
The department laid out the allegations in a 15-page letter sent to Gov. Jared Polis on Thursday.
The law requires states to offer services that allow people with disabilities to live in the least-restrictive environment that can meet their needs. While some people do require the level of care found in nursing homes, others could live in the community, provided they have enough support.
Colorado had more people living in nursing homes who had “low-care needs” than all but nine states, according to the Justice Department, and is near the bottom when it comes to transitioning people out of nursing homes.
“People with disabilities have too often been unlawfully segregated in institutions like nursing facilities,” Kristen Clarke, an assistant attorney general in the Justice Department’s Civil Rights Division said in a news release. “The Civil Rights Division will vigorously enforce the rights of people with physical disabilities, including older adults, to access the community-based services they need to age in place and thrive at home.”
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Tennessee has become the latest state to take away opportunities for meaningful employment from individuals with I/DD who are unlikely to be accommodated by Competitive Integrated Employment Programs. |
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Bill Blocking Tennessee Employers from Paying Disabled Workers Less Passes Senate
By Jon Styf, The Center Square, March 8, 2022
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Workers with disabilities would not work for less than the minimum wage under a Tennessee bill passed by the Senate.
A companion bill is expected to be heard Wednesday in a House subcommittee.
Senate Bill 2040, dubbed the Tennessee Integrated and Meaningful Employment Act, would go into effect July 1. It prevents employers from paying workers with disabilities less than the minimum wage, which in Tennessee is the federal wage of $7.25 an hour.
“This bill would eliminate usage of a 1938 program that was maybe a good idea at its time,” said Sen. Jeff Yarbro, D-Nashville, the bill's sponsor. “But I think, over the past 80 years, we have learned and grown more.”
Yarbro said the Trump Administration released a report in 2020 that recommended the federal government and state halt the minimum wage exception for those with disabilities and 10 states already have done so. Yarbro said only two employers in Tennessee have the certification to use the minimum wage exception but did not name them.
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Sen. Janice Bowling, R-Tullahoma, voiced her concerns with the unintended impact of the bill, saying she volunteered at a sheltered workshop and saw the benefits.
“While it appears this bill will pass, there is a concern for me that people who actually enjoyed the piecework and the sheltered workshop and who could not go out into the regular workforce, that we need to pay close attention that we don’t lose the opportunity for these people to be meaningful and going to work in their world and providing some degree of useful work,” said Bowling, who noted she has a degree in special education. “Not just repetitive things that have no function but things that would not qualify as a full-time job for a business or locality.”
The Senate passed the bill, 27-3, on Monday.
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Florida - State Agency Cuts Care for Tampa Bay Woman with Severe Autism, Mom Says
By Mahsa Saeidi, WFLA TV, March 8, 2022
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A Tampa Bay area mother is pleading for help after her daughter lost access to critical care.
Kathy Lewis’ daughter, Remington, lives with a severe form of autism that requires assistance. For nearly five years, the young woman has received around-the-clock care at home. Now the state is threatening to cut that care.
Lewis says this couldn’t come at a worse time.
The mom tells 8 On Your Side her daughter’s condition is only getting worse. She screams for hours, runs out of the house and struggles to sleep.
Remington is currently enrolled in a Medicaid waiver program operated by the Agency for Persons with Disabilities, or APD. Since 2017, Lewis says, the state has sent staff to Remington’s home around-the-clock.
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Now, after an annual agency review, the state determined Remington can be home alone approximately seven hours a day.
“Oh it’s stress non-stop, all day, every day,” Lewis said. “The money is there, set there, for our children and you have to fight to get it.”
A fight to get the money – and a fight to keep it.
Lewis received a letter from APD in January explaining the cuts set to take place this year. Remington previously qualified to get nearly $150,000 a year. The state proposes slashing that amount by a third, meaning Remington would qualify for less than $100,000.
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Georgia - Christian Nonprofit Accused of Abusing Special Needs Children in its Care
By Johnny Edwards, The Atlanta Journal-Constitution, March 3, 2022
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For decades, David and Kathy Fahey have been known to their neighbors as models of Christian charity, doing God’s work by taking in severely disabled children from around the world who had nowhere to go and giving them a home on their farm.
Now police are alleging that behind that wholesome image was a house of horrors.
On Wednesday, authorities arrested David Fahey, 62, at his property in Johnson County and charged him with four counts of felony cruelty to children and three counts of felony false imprisonment. According to a sheriff’s office official, Fahey is accused of restraining a teenager with handcuffs and beating him with a belt, a curtain rod and a wooden rod. He was booked into jail wearing a QAnon T-shirt.
Kathy Fahey also had been under investigation, according to the Georgia Bureau of Investigation, but she died on Feb. 1 at age 60. Her death was ruled accidental, brought on by toxic levels of acetaminophen, the pain reliever in Tylenol. Her son told The Atlanta Journal-Constitution on Thursday that the stress of the criminal investigation likely contributed.
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Meanwhile, state protective services has been dismantling the Faheys’ ministry. Four children, two of whom the Faheys had adopted, were removed from the home last month. Four adults in their care, all with severe disabilities, remained in the home Thursday, with Adult Protective Services in the process of removing them too.
With Fahey jailed on Thursday morning, his biological son, Logan Fahey, had been left to care for the remaining adults. Two have genetic disorders, all four are in diapers and none can walk on their own.
Outside, in the front yard, a family cemetery is surrounded by a chain link fence. A pile of dirt is still fresh over Kathy Fahey’s grave. Surrounding her headstone are six other graves, including an infant and five other children and young adults who once lived with the family.
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[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.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:
S. 3417 - T he Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.
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.
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Direct Support Professionals: |
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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
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.
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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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