September 16, 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


September 27, 2022

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

VOR's next Quarterly Networking Meeting will take place on the afternoon of September 27th on Zoom. The topic this time will concern the challenges our families face when their loved ones with I/DD require  hospitalization. 

To register for the meeting, just email us at [email protected] with the subject line "Networking Meeting". Please include your full name and the state where you live. We will email you the link to the  Zoom meeting.

VOR's Fall Membership Campaign

As we do each year, we reach out to our members and ask that they reach our to friends, family, and other families with loved ones with I/DD and ask them to join the community that is VOR.

This year, we are hoping to expand our base, and include more people whose loved ones receive services in private ICFs or through home and community-based services, or who participate in14(c) Employment Programs. 

VOR stands for choice and advocates for high-quality care for all people with I/DD and autism in all settings. 

This is a great time to give a gift membership to someone who feels as we do, that everyone with I/DD and autism deserves to live their best life in the setting of their choice, acknowledging that sometimes, that setting might be a group home. (LOL)

Click here for membership information

Please Read:

10 Things About Long-Term Services and Supports (LTSS)

By Priya Chidambaram and Alice Burns, Kaiser Family Foundation, September 15, 2022

In 2020, an estimated 5.8 million people used paid long-term services and supports (LTSS) delivered in home and community settings and 1.9 million used LTSS delivered in institutional settings, according to CBO estimates. Most people ages 65 and older and many people under age 65 with disabilities have Medicare, but Medicare does not cover most LTSS and instead, Medicaid is the primary payer for LTSS. To qualify for coverage of LTSS under Medicaid, people must meet state-specific eligibility requirements regarding their levels of income, wealth, and functional limitations. An unknown, but probably even larger number of people, used unpaid LTSS that is provided by family, friends, or neighbors. LTSS encompass the broad range of paid and unpaid medical and personal care services that assist with activities of daily living (such as eating, bathing, and dressing) and instrumental activities of daily living (such as preparing meals, managing medication, and housekeeping). They are provided to people who need such services because of aging, chronic illness, or disability, and include nursing facility care, adult daycare programs, home health aide services, personal care services, transportation, and supported employment. These services may be provided over a period of several weeks, months, or years, depending on an individual’s health care coverage and level of need.

There have been longstanding challenges finding enough workers to provide LTSS for all people who need such services, and the COVID-19 pandemic exacerbated those issues considerably. In response to the pandemic, the government promulgated new initiatives to help improve safety and quality in nursing facilities, and created the first-ever set of quality measures for home and community-based services (HCBS), but those steps are unlikely to address long-standing challenges in financing and providing LTSS. The federal government also provided states with temporary authorities and funding to provide new or additional LTSS during the pandemic, but those authorities and funding are time-limited. As the population ages and as advances in medicine and technology enable people with serious disabilities to live longer, the number of people in need of LTSS is expected to grow. Looking forward, there will likely be continued interest among policymakers in expanding the availability of LTSS and improving their quality, though identifying the resources to do so will be challenging.

Read the full report here

Please note: This article covers a lot of terrain, ranging from Medicare services for seniors to some very detailed information on the I/DD population in both HCBS and ICF settings. We strongly suggest that our members read and retain this article for future reference. (There is a printer Icon right under the date to help you print a copy or save a pdf.)

Direct Support Professionals:

Direct Support Professional Recognition Week

September 11-17, 2022

This week, let us honor the Direct Support Professionals for their devotion to our beloved family members with intellectual and developmental disabilities, and thank them for incredible care they provide all day, every day. 

In their honor, we are asking our members to reach out to their elected officials in the House and Senate and ask them to give recognition to these dedicated caregivers by ensuring wages and benefits that are commensurate to their service, advanced training, and accredited certifications and degrees in order to define a true career path for these dedicated professionals.

To speak with the offices of your members of the House and Senate, you may look up their numbers at:

Or you may call the Capitol Switchboard at (202) 224-3121 and they will direct you to the right extension. 

Below is the Department of Labor's page about the importance of DSP's. While they make a few good points, and offer some eye-opening statistics, they fall short on stating the obvious: DSP's deserve fair wages and benefits. 

Direct Support Professionals (DSPs)

The Importance of DSPs

Press Release from the US. Department of Labor

Every day across the nation, Direct Support Professionals (DSPs) play a vital role in America’s workforce and economy by providing necessary supports and services to people with disabilities of all ages, including supports related to employment. 

DSPs are part of the broader workforce of Direct Care Workers (DCWs). A 2019 issue brief estimates 4.5 million people in the U.S. are DCWs, 87% of whom are women and 53% women of color.

As skilled professionals, DSPs support people with disabilities to participate in their communities, including through employment. For example, they may serve as job development staff to assist in finding and/or customizing jobs or as job coaches who provide direct employee assistance on the job. They also provide other services, such as help with activities of daily living.

A current nationwide shortage of DCWs, including DSPs, adversely affects not only millions of DSP workers themselves, but also the many people who use or could benefit from their services. Shortages in recent years have spurred federal, state and local action to bring more attention to this profession and mount an effective response to attract more people to become DSPs and support them through appropriate compensation and opportunities for advancement. People with disabilities can be great candidates as DSPs to help address the shortage.

View the press release here

SNFs May Be Liable if they don’t try to Stop Residents’ Racial Bias Against Workers

By Joe Bush, McKnight's Long-Term Care News, September 12, 2022

A worker’s civil rights at work are more important than a customer’s right to express himself or herself, particularly in cases of racial bias.

That’s the crux of the Equal Employment Opportunity Commission’s stance in its lawsuit filed Sep. 6 against a Vermont long-term care facility, Elderwood at Burlington, owned by 98 Starr Road Operating Co. The SNF is accused of doing nothing to keep residents from racially abusing Black nursing staff, according to Norris Cunningham, a leading healthcare law expert.

According to the EEOC release, in addition to various and frequent slurs showing racial bias, “One patient repeatedly told Black employees to ‘go back to Africa’; followed Black employees throughout the facility so as to racially berate them; and physically assaulted Black employees because of their race.”

Rather than address the problem, management allegedly responded to complaints by indicating it couldn’t stop residents from speaking their minds, and according to the release, one supervisor made it worse: “In response to one complaint by a Black nurse, an Elderwood manager told her that she should be used to being the target of racial slurs because she ‘is from the South.’” 

Cunningham said the facility drew the EEOC suit not because of the residents’ biased words and actions but because it failed to take steps to stop them.

“It’s not a hostile work environment because you’re being called names, it’s a hostile work environment because you’re being called names and your employer isn’t doing anything about it,” said Cunningham. “(SNFs) are reflexively focused on trying to meet and respect residents’ rights and that includes the right to be a bigot. A person has every right to be a bigot. 

“What they don’t have a right to do is hurl racial insults at people who are doing their job, and an employer has responsibility to minimize that and minimize the impact of that on their employees.”

Read the full article here

New York - Staffing Crisis in Developmentally Disabled Sector Costing Millions

By Brendan J. Lyons, Times Union, September 13, 2022

A staffing crisis at residential facilities that serve those who are intellectually and developmentally disabled is costing more than $100 million a year to handle the fallout from the flood of individuals leaving those jobs, according to a recent survey conducted by New York Disability Advocates.

The survey captured more than 50 percent of the industry's stakeholders, confirming that low pay and difficult working conditions are exacerbating the widespread closure of facilities, including many run by the state Office for People with Developmental Disabilities.

"The statistics are rather sobering," said Erik Geizer, CEO of the Arc New York, the state's largest nonprofit organization serving people with intellectual and developmental disabilities.

Geizer noted that there is a 35 percent annual staff turnover rate and that is being compounded by the roughly 20 percent vacancy rate for the "direct support professionals" who provide the unique services.

In addition, 40 percent of providers have closed or reduced programs in the past several years.

"That’s pretty sobering because the number of people with intellectual and developmental disabilities is pretty stable. It’s not going down," he said. "This is as bad as I've seen the field. I’ve never seen things so bad."

Geizer said the quality of care is also suffering as a result of the labor shortage — in an industry where clients do better when the workers helping them are familiar faces. The program shutdowns also have led to many parents and caretakers of developmentally disabled individuals needing to quit their jobs to care for their loved ones.

With so many workers leaving the industry — where the rate of pay is in line with fast-food restaurants and retail stores — the additional costs of retraining new workers, including many of whom may not remain the jobs, is depleting the limited amount of money set aside for caregiving.


State News:

Wisconsin - For-Profit Companies' Entry into WI Program for Disabled, Elderly Raises Concern

By David Wahlberg, Wisconsin State Journal, September 6, 2022

For-profit companies outside of Wisconsin plan to buy two of the four local nonprofits that run a state Medicaid program for people with disabilities and the frail elderly, which advocates fear could lead to cuts in services for about 80,000 of the state’s most vulnerable residents.

Molina Healthcare, based in Long Beach, California, plans to acquire My Choice Wisconsin, of Wauwatosa, which has a sizable presence in Dane County. Humana, based in Louisville, Kentucky, plans to purchase Inclusa, of Stevens Point.

My Choice and Inclusa are the largest of four managed care organizations, or MCOs, that run Family Care, a state program that provides home care, transportation, job support and other services to keep people out of nursing homes. Started in 2000 as an alternative to county-run services, Family Care has helped Wisconsin retain a good reputation for long-term care, with the state ranking third nationally in a 2020 scorecard.

But the number of MCOs participating in Family Care has declined in recent years, with some of those that remain making what advocates say are questionably large surpluses over the past two years from state and federal tax dollars. Molina and Humana could be preparing to also buy the other remaining MCOs, which would give the state little leverage to rein in profits and protect patients, advocates say.

“These big insurance companies can hold the state hostage if they want to,” said Mitch Hagopian, managing attorney for Disability Rights Wisconsin. The state “needs to make sure (the companies) are not squeezing all of the profits they possibly can at the expense of restricting services to Family Care members.”

With a caregiver workforce shortage already making it difficult for some people on Family Care to obtain services, “it seems like a really bad time to be pulling money out of the system and not ... making provider rates higher,” said Janet Zander, with the Greater Wisconsin Agency on Aging Resources.


Iowa - As State Institutions Close, Families of Longtime Residents Face Agonizing Choices

By Tony Leys, Kaiser Health News, September 13, 2022  

Lee, 57, has spent 44 years at the Glenwood Resource Center, a state-run institution for people with intellectual or developmental disabilities. He has autism and epilepsy, and his parents decided when he was 13 that he needed the structure and constant oversight offered by a large facility.

Theirs was a common decision at the time. It no longer is.

The number of Americans living in such institutions has dropped more than 90% since the late 1960s. Seventeen states have closed all their large public institutions for people with disabilities. Just five states — Iowa, Nebraska, South Carolina, Utah, and Wyoming — haven’t closed any, according to a University of Minnesota expert.

Iowa announced in April that in 2024 it would shutter the Glenwood Resource Center, a sprawling campus near the state’s western border. State leaders cited federal pressure to improve conditions for the facility’s residents or place them elsewhere.

Many of the remaining residents of such places have lived there for decades, leaving their families with wrenching choices when closures loom.

Lee knows he will move soon, even if he doesn’t understand all the implications.

His sister, Connie Bowen, broached the subject during a recent visit. She picked her brother up from the one-story house where he lives with several other residents on the institution’s grounds and drove him to a nearby Pizza Hut for lunch.

As he sipped on a root beer, she asked how he felt. “Does it make you sad or happy that you’re leaving?” she said.

“Happy! I’m happy,” he replied.

Bowen, who is her brother’s legal guardian, agrees in theory with the idea of caring for people with disabilities in homes or apartments. But like many other relatives of Glenwood Resource Center residents, she worries that the new arrangements might not be safe for people who have been institutionalized for decades.

“I hope I can find a good place that’ll take good care of you,” Bowen told Lee. “Yeah, I know,” he said.

[Glenwood's] 380-acre campus includes numerous ranch-style homes, where residents live with oversight from staff. It has several large old buildings, from days when people with disabilities were warehoused. It also includes a fire station, a greenhouse, a water tower, and a cemetery containing the graves of hundreds of people who have died at the institution since the 1800s.

The facility has been a vital part of life in Glenwood, a town of about 5,000 people near the Missouri River. The institution has nearly 470 workers, making it the largest employer in the area, with relatively good wages and benefits. Two or three generations of many local families have worked there.

Some may find new jobs in the Omaha, Nebraska, area, which is less than an hour away, but town leaders worry others will move away. A few may transfer to a similar institution owned by the state in the town of Woodward, which is 150 miles to the northeast.

Some of the institution’s residents will never understand the situation. One is Seth Finken, 43, who has lived at the Glenwood Resource Center since 1984. Childhood meningitis damaged his brain and left him blind, deaf, and medically fragile.

His mother, Sybil Finken, lives in the town of Glenwood and sees few options for her son in the region. The most advanced care programs she has talked to are in bigger cities, such as Des Moines or Dubuque. “This is Seth’s community,” she said. “I don’t want him moving two or four hours away.”

For years, Sybil Finken called for Iowa to keep operating the Glenwood Resource Center. She knew most other states had closed institutions for people with disabilities. She figured Iowa would follow suit eventually, but she believed assurances that longtime residents could live out their lives there.

Now, she said, all she can do is keep talking to private care agencies and hope someone figures out how to keep her son safe in a community setting.

“Seth and I are going to be the last ones out the door,” she said.

Read the full article here

Pennsylvania - Opinion: Getting Thrown to the Wolves

By Susan Jennings, Standard-Speaker, September 12, 2022

A petite, elderly woman, Barbara Nowakowski is on a fixed income that does not even allow for bus fare for travel. She has tears in her eyes as she discusses the plans the Wolf administration has for her severely disabled son, Robert. After 46 years of successful living at White Haven State Center, the Wolf administration is shutting it down and moving her son to an uncertain future and a place so far away that his mother will never be able to see him again.

Donna Giordano Pirozzi is from Pennsylvania and her 20-year-old autistic son has been in the ER for 11 days now for his aggressive and self-injurious behaviors. He cannot be safely managed at home without expert and skilled intervention. His social workers have been unable to find a residential facility for him because his disability is too intense and too severe and there are no beds available in Pennsylvania that will take him. Even Melmark, Bancroft and Elwyn are not accepting referrals. Woods and Devereux will not take him. His distressed family has spent thousands of dollars on an attorney to get their son into the only place willing to take him at that time — a school in New York. They lost the case.

Donna just got off the phone with the admissions department at Sheppard Pratt in Maryland, a four-bed unit only take people coming from the ER. Her son is fourth on a waiting list.

Donna’s son is the perfect candidate for treatment and residential services at White Haven Center but was denied the opportunity by one man, Gov. Wolf, who has taken it upon himself to eliminate the level of care at an intermediate care facility that could have and should have been a lifeline and a safety net for her severely autistic adult son. And all for the sake of special interest groups that have nothing comparable to offer in White Haven Center’s place.

I know this because my own son, Joey, is severely autistic and behaviorally challenging like Donna’s son. “Community” or HCBS services failed my son completely. In a short span of four years, he was thrown out of six group home facilities represented by three “community” providers across the commonwealth, and involuntarily committed to no less than five psychiatric wards “between” the less supported community homes.

While in “community” services, his eye socket was broken, he had stitches in the back of his head, he was so toxically overmedicated he developed disfiguring female breasts and Parkinsonian-like tremors in his hands. We fought a court battle with the Office of Developmental Programs all the way through to Commonwealth Court, but we won and gained admission for our son to White Haven Center. It is there that we know he has a quality of life and expert supervision he never experienced in “community.” And now Gov. Wolf is proudly eliminating this vital campus facility.

What is White Haven Center? It is a public intermediate care facility designed to replace the “snake pit” institutions of old. White Haven Center has pastoral grounds far from roads and highways and an on-site interdisciplinary treatment team of doctors, psychologists, nurses, therapists, dieticians and skilled, highly trained, justly compensated and supervised direct care staff available for 24/7 supervision and assistance. WHC has thick walls to muffle sounds that cause sensory issues, safety furniture, plexiglass on the windows and amenities that include a therapeutic pool, a cafe, a gymnasium, a campground, a chapel and a workshop, and parties, barbecues and dances.


National News:

COVID was Deadlier for those with Intellectual Disabilities, according to New Research

By Ellen Mbuqe, Syracuse University News, September 13, 2022,   

Authors of a new peer-reviewed paper have discovered that COVID was the leading cause of death for people with intellectual and developmental disabilities (IDD) in 2020.

The study, “COVID-19 Mortality Burden and Comorbidity Patterns Among Decedents with and without Intellectual and Developmental Disability in the US”, looked at 2020 death certificate data to examine death patterns for people with or without IDD. They found that those without an IDD, COVID was the third leading cause of death, following heart disease and cancer. But for those with IDD, COVID was the number one cause of death.

IDD are conditions characterized by life-long impairments in mobility, language, learning, self-care, and independent living. Examples include Down Syndrome, cerebral palsy, and intellectual disabilities.

Syracuse University Associate Professor Scott Landes and lead author of the paper, published by the Disability and Health Journal, said that this study had confirmed earlier predictions that COVID-19 would be deadlier among people with IDD.

“Even when we adjusted for age, sex, and racial-ethnic minority status, we found that COVID-19 was far deadlier for those with IDD than those without,” said Landes. “Furthermore, people with IDD were dying at much younger ages.”

In understanding why the COVID-19 burden is greater for people with IDD, the researchers feel that more attention needs to be given to comorbidities as well as living arrangements.

“People with IDD are living in congregate settings at a higher percentage than those without an IDD,” said Landes. “Group living situations, especially with close-contact personal care support, is associated with the spread of COVID-19. For the estimated 13 to 20 percent of adults with IDD living in these settings, the risk cannot be overstated.”

“While it is important to attend to differences in comorbidity patterns, it is also necessary to realize that the increased COVID-19 burden among people with IDD may at least partly be due to social factors such as a higher proportion of this population living in group care settings, insufficient attention to care needs on a public and private level, and inequities in access to quality healthcare,” said Landes.

Read the full article here

Direct Support Professionals:

Please share this offer with your loved one's

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]


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.


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.

Help Us Help:

Families of Individuals with

Severe/Profound I/DD and Autism

Need a Voice in Washington, D.C.

For Four Decades, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we have engaged in over ninety meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

Please click here to join, renew your membership, or contribute to VOR

Shop at Amazon?

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

  1. Just go to 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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