January 7, 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.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR's 2021 Year-End Fundraising Campaign

Thank You!

VOR's Annual Membership Drive and Fundraising Campaign is over! While contributions are still coming in, we are very pleased with the support we have received from all of our members and donors. We thank you all for your dedication and service, and we look forward to continuing our service to you, the families of VOR, in the years ahead.
What's Happening in Your State?
Try as we might, there are often relevant articles in local papers that don't make it onto our desks or into our newsletter. Due to internet algorithms, cookies, and search engine optimization, many of the articles we receive often concern news from just a handful of states.

Therefore, we are asking our members to reach out to us whenever an article that pertains to people with I/DD, severe autism, intermediate care facilities, sheltered workshops, or other stories that may be of interest to our families.
We can't promise to use everything that is submitted (we often pare down our list stories each week from 15-30 stories down to a half dozen or so), but we will try to add them to the newsletter or our Facebook page as we see appropriate.

If you do come across any articles of interest, please send a short email with a link to the story to us at [email protected]
In Memoriam:
Steve Wallace

We are sad to announce the passing of Stephen Wallace, of Red Rock Texas. Steve was a member of VOR's Board of Directors and served as Treasurer of the organization from 2019 to 2021. Steve was a dedicated advocate for people with autism and I/DD in his home state of Texas.

Steve is survived by his wife Debra, his five children and ten grandchildren.

National News:
IRS Raises Limit For ABLE Accounts
By Michelle Diament, Disability Scoop, January 3, 2022

For the first time in four years, the amount of money that people with disabilities can save without jeopardizing eligibility for government benefits is rising. The increase is the first since 2018. It comes as a result of inflation, the IRS said.

Starting this month, the Internal Revenue Service said that the federal gift tax exclusion is growing from $15,000 to $16,000 annually. That same cap also applies to contributions to ABLE accounts, a special savings vehicle for people with disabilities.

ABLE accounts, which were created under a 2014 law, allow individuals with disabilities to save up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much is in the accounts. Interest earned on funds in ABLE accounts is tax free and money saved can be used to pay for qualified disability expenses including education, health care, transportation and housing.

Annual deposits in ABLE accounts are generally limited to the value of the IRS’ gift tax exclusion, now $16,000.

However, people with disabilities who are employed can also save some of their earnings in the accounts above and beyond the gift tax amount. For those in the continental U.S., that means up to an additional $12,880 this year, according to the ABLE National Resource Center. Alaska residents can save an extra $16,090 in compensation and that figure is $14,820 in Hawaii, the center said.

To be eligible for the accounts, individuals must have a disability that onset before age 26.

State News:
Massachusetts - COVID is raging at some, but not all, congregate care facilities in Mass.
By Deborah Becker, WBUR News, January 04, 2022

With coronavirus cases spiking in Massachusetts, rates of infection were mixed in some places where the virus would be expected to spread the fastest: congregate care facilities, where groups of people live together in close quarters.

State data suggest that so far in some congregate care facilities, there has been no spike in cases. In others, the jump is dramatic.

The biggest spike in positive coronavirus tests was observed inside group homes for people with intellectual and developmental disabilities that are run operated by private vendors, according to state data released on Dec. 28. The data show that on Dec. 1, there were 34 positive cases among residents of such homes. The latest tally showed cases climbed to 146 by the end of December.

"That's a signal that there's a problem," said Rick Glassman, director of advocacy for the Disability Law Center. "We need to do more to get infection under control."

More than 7,700 people live in group homes overseen by the state Department of Disability Services (DDS) and most are run by private vendors. Glassman said although workers at state-run group homes are required to be vaccinated, workers in privately run homes are not. Regardless of staffing shortages facing some homes, Glassman said vaccines should be mandated for all group home workers, and there should be more frequent testing of both residents and workers.

"It is to the state's credit that they require vaccines in nursing homes," Glassman said. "But people with intellectual and developmental disabilities are equally, and sometimes more, vulnerable."

Kansas - Wichita mom calls on state to raise pay for some caregivers
By Shawn Loging, KWCH News, December 30, 2021

Butler County mother Sarah Mace knows the struggles of the labor shortage. Since the end of August, she’s sought someone who can supervise her eighth-grade son. But the position only pays $10 per hour. As much as Mace would like the flexibility to pay more, she can’t because the state sets that wage.

“We need to be creative because something needs to change and something needs to change rapidly,” she said.

Mace has interviewed plenty of people.

“They may really want to come and work for us because people have told me that, but when they’re looking at $13.50 an hour versus $10, there’s no real question about which one they would choose,” Mace said.

But it’s been months since her family has been able to find someone to take the job to provide in-home supervision for her son, Luke. Luke has intellectual and developmental disabilities including autism and epilepsy.

“My son qualifies for a certain number of hours where an individual can come into our home and help us supervise him to make sure he, along with the rest of our children are safe because they’re supervising him and we’re able to supervise our other children,” she said.

“Have a lot of behavioral issues, medical issues, things like that,” Mace said. “So as a parent, you really want someone who knows how to be able to respond safely when those challenges arise.”
Mace said in 2019, Luke was put on the Intellectual and Developmental Disability or I/DD waiver. For a certain number of hours the state pays for a caregiver to meet some of his needs, something that’s crucial when Luke comes home from school and Mace and her husband are still at work.

She said this is a statewide issue for families and is connecting with other families in a similar position, and is hoping as a group, parents can get lawmakers to act.

“I would be willing to pay someone $20 an hour to watch my child if I believed that they would show up, that they would stay and that they had the skills,” Mace said.

For her, having someone who can consistently be there for children like her son leads to better outcomes and provides safety.

“That stability is... it is key to their survival,” Mace said.

She said someone they had hired for a long time left for a higher paying job at a fast-food restaurant. For now, they’re relying on family. When that doesn’t work, Mace and her husband leave their jobs early and as a result, are burning through paid time off.

New York - Amid staffing crisis, pleas for Hochul to help NYers with developmental disabilities
By Nancy Cutler, Rockland/Westchester Journal News, January 5, 2022
As Gov. Kathy Hochul's first State of the State address approaches, supporters of New Yorkers with intellectual and developmental disabilities are anxious to hear how the governor plans to address a soaring staffing shortage that reached critical proportions during the pandemic.

Nonprofit leaders say they have long faced hurdles recruiting and keeping direct-care staff – it's hard work with low pay – but COVID-19 pushed even more out of the field.

The jobs are crucial, advocates say, if New York wants to live up to its commitment to ensure disabled residents live as independently and productively as possible. But workers – mostly women, often immigrants and people of color – face a growing wage gap.

Shortages of Direct Support Professional staff – known as DSPs – top 20% across the state. About 93% of agencies say applicants for a growing number of job openings have plummeted. Half of agencies that support people with developmental disabilities say they have had to cut programs and services because they cannot find staff. Group homes are closing and consolidating, especially in the Finger Lakes and Western New York.

While fast-food workers across the state will see a $15-an-hour minimum wage in 2022, the average hourly pay for DSPs – those who assist people with daily tasks – is $14.56.
Hochul has taken some significant action to help. She's also made calculations that cause concern.
In November, Hochul assigned $1.5 billion of federal American Rescue Plan funding to help with retention and recruitment of DSPs. That included bonuses for those who worked through the pandemic and for staff vaccinated against COVID.

And the governor recently signed a slate of bills designed to support people with developmental disabilities. One bill demands a probe of the state's response to the COVID pandemic and its impact on people with developmental disabilities.

Last year, the Office for People with Developmental Disabilities directed "asymptomatic" residents back to group homes, using guidance similar to a controversial rule that sent COVID-infected people to nursing homes. OPWDD has documented 607 group home resident COVID deaths, as of Dec. 16.

New York - Nonprofit disability service providers generate billions for NY State
By Angelique Molina-Mangaroo, NYNMedia
January 3, 2022

Nonprofit disability service providers generated $14.3 billion in economic output in New York State overall in 2019, according to a recent report that set out to quantify the economic impacts of such providers. The total includes $6.7 billion in revenues generated by the providers, $2.5 billion in output for their suppliers, and $5.1 billion related to employee spending. 

The report, issued by the Rockefeller Institute of Government in December and commissioned by New York State Industries for the Disabled (NYSID) and the New York Alliance for Inclusion & Innovation, outlines the importance of support services being provided by disability service providers and the revenue being generated annually.

“Behind every number is a person, a person who is on the autism spectrum or a person who has cerebral palsy or who maybe is still recovering from a serious brain injury and is able to still go on with those disabilities and is able to make a contribution and live a fuller life,” Bob Bellafiore, spokesperson for NYSID told NYN Media. “This adds humanity to people's lives. It adds quality to their lives, it puts money in their pockets, and it gives them what Mario Cuomo always talked about, which was the dignity of owning their own bread.”

The report calls for significant investment in the development disabilities sector, which has been dealing with a staffing crisis for about a decade, according to Bellafiore. The vacancy rate is currently at 24%, and according to Michael Seereiter, President and CEO at the Alliance, this is because of the poor wages and burn out that causes staff to go on to other employment opportunities. 

The report also highlights that direct service provider wages are driven by the reimbursement rates for Mental Hygiene Services, which is set annually by the Office for People with Developmental Disabilities (OPWDD). In 2016, the increase in minimum wages to $15 an hour was met with a relative stagnation in OPWDD reimbursements, which caused the premium once paid to providers to fall.

“I think that there is a wide recognition that people with people who are in the job of being a direct support professional are underappreciated and underpaid and under compensated in our current system. But what we need to see are some significant investments that turn the tide and make these organizations and therefore, these services, sustainable for the long term,” Seereiter told NYN Media.

Florida - Gov. DeSantis proposes $1.22B bump in health care, social services spending for 2022-23
By Christine Jordan Sexton, Florida Politics, January 10, 2022

Buoyed by $3.5 billion in extra money from the federal government, Gov, Ron DeSantis on Thursday unveiled a nearly $100 billion proposed budget that increases Medicaid rates for providers that care for the elderly and people with intellectual and developmental disabilities while keeping the base payments made to Florida hospitals essentially unchanged.

In all, the Governor’s proposed spending plan for fiscal year 2022-2023 recommends spending $45.8 billion across five state agencies to keep the state’s health and human service-related programs funded.

That’s $1.22 billion more than current spending levels.

Medicaid provides coverage for a wide variety of health care services, but it doesn’t provide coverage for home and community-based services that assist people with basic activities of daily living such as eating, bathing and grooming.

Florida operates Medicaid waiver programs to provide those services. The iBudget waiver is designed for people with developmental and intellectual disabilities and the Governor has recommended a $25.5 million increase for the program. That would remove 480 people from the waiting list.

But home and community-based waiver service providers worry the provider network may buckle under an increased demand for services and stagnate reimbursement rates.

DeSantis’s budget does include an additional $31.6 million to increase rates, a recommendation that providers and advocates are calling “historic.”

“My first reaction was I was encouraged there was something in the budget,” said Florida Association of Rehabilitation Facilities President and CEO Tyler Sununu. Increasing reimbursement rates has been a priority of his and Sununu is lobbying for a $240 million bump in funding, far more than what DeSantis recommended.

Nursing Home News - The DSP Crisis:
While nursing homes cater to a different clientele than ICFs and group homes for people with I/DD and are subject to different regulations, they are long-term care facilities that rely on the same workforce of Direct Support Professionals.
Pennsylvania National Guard members helping at care centers statewide
By Jeremy Jenkins, WGAL News, January 5, 2022
Pennsylvania National Guard members are deployed at care centers across the state, including in Lancaster County.

Approximately 110 service members are currently activated to assist with staffing shortages.

The National Guard said the service members are a combination of medical providers, medics and general-purpose personnel.

The medical personnel assists with non-acute care of patients, such as checking vitals. The general-purpose personnel assists with tasks that include delivering meals and cleaning.

A spokesperson for the National Guard said the need for these services is just as great as when the long-term care facility mission began in April 2020.

"Everybody thought it was just going to be over the next month or two. We'll be doing some staff assist missions. Here we are in January 2022, and they're still going on," Capt. Travis Mueller said.

To date, National Guard members have worked more than 14,500 shifts at more than 130 long-term care facilities in Pennsylvania.

Note - Last month we reported on members of the National Guard performing similar details in other states, including Minnessota and New York.
New York - Lawsuit says new rules for NY nursing homes are unconstitutional
By Morgan McKay, Fox 5 News, December 30, 2021

A lawsuit that has been building for months, was filed against the New York State Health Commissioner by hundreds of nursing home operators.The federal lawsuit argues that recent changes by State lawmakers to how nursing homes operate are unconstitutional.

The State Legislature in April of this year, passed sweeping reforms on how nursing homes spend their money, following a huge outcry from advocates and lawmakers on how nursing homes were operating during the pandemic.

An investigation led by the Attorney General’s office into nursing home practices during the pandemic, revealed that some for-profit facilities with low staffing levels also had a higher number of resident deaths. This same report also showed that the former Governor Andrew Cuomo administration was undercounting nursing home deaths by more than 50 percent.

In response, state lawmakers passed numerous bills in order to try and reform the health care system. Included in this, was legislation that will require that nursing homes spend at least 70 percent of their revenue on direct resident care. At least 40% of that must be spent on direct care-givers.

Now operators of over 250 nursing homes, including numerous trade associations, have filed a lawsuit in U.S. District Court in Albany, saying these changes "illegally superimposes obligations on the way facilities must spend money they have received or will receive from the Federal Government under the Medicare program for services already rendered to Medicare-eligible patients that are not paid for with state funds. And in order to subsidize New York State’s Medicaid program, it confiscates federal Medicare dollars meant to reimburse Plaintiffs."

Stephen Hanse, President of the New York State Health Facilities Association, says that many of these nursing homes just don’t have the money to hire additional staff, which could force many of these facilities to close.

"The number one issue we’re dealing with right now is a long term care staffing crisis," Hanse explained. "We don’t have the workers. Prior to the pandemic we didn’t have the workers and now the pandemic has only exacerbated the shortfall."

Around 80% of New York’s nursing home resident care is paid for through Medicaid, but the state has cut Medicaid reimbursements to these for facilities for over 12 years in a row.

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.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.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R. 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 - 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.
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.

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?

Contact us at [email protected]
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