July 31, 2020
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
Urge Congress to Increase Equitable Funding in the Coronavirus Relief Bill

Congress is in the process of negotiating the current Coronavirus Relief Bill. VOR has identified two key policy proposals to protect individuals with intellectual and developmental disabilities (I/DD) and to shore-up state developmental disability (DD) systems that have been adversely affected by the cost of responding to COVID-19. We urge our families to contact their representatives and senators in Congress and urge them to support VOR’s priorities:
1. We urge Congress to approve an additional injection of federal funds into state DD service systems through extending the existing increase in the Medicaid Federal Matching Assistance Percentage (FMAP) until the pandemic is over.

2. We urge Congress to provide targeted assistance for needed personal protection equipment and additional benefits for direct support personnel in all service settings for persons with I/DD. All these individuals are highly susceptible to COVID-19, regardless of where they live. Congress should reject proposals that would limit these benefits to personnel providing services in HCBS settings only. That approach would pit Medicaid programs and I/DD Medicaid beneficiaries against one another by favoring one setting over the other. Congress should not be in the business of picking winners and losers among vulnerable people; it should provide additional funding for personnel in all residential settings, including individual homes and Intermediate Care Facilities.  

Taking action is easy. Please click the link below to be taken to a letter that can be automatically sent to your representative and senators in Congress.

Senate COVID-19 Relief Proposal Overlooks Disability Community, Advocates Say
By Michelle Diament, Disability Scoop, July 30, 2020
As negotiations begin in earnest on Capitol Hill for another coronavirus relief bill, advocates are warning that the needs of people with disabilities are on the verge of being ignored again.

U.S. Senate Republicans unveiled their $1 trillion proposal this week to address the ongoing pandemic. The legislation, known as the HEALS Act, calls for another round of stimulus payments to individuals, liability protections for businesses and funding for schools, among other initiatives.
However, disability advocates say what’s most notable is what’s missing.

“Despite months of concentrated advocacy, it includes no new funding for Medicaid or for home- and community-based services,” said Julia Bascom, executive director of the Autistic Self Advocacy Network, who described the bill as “a slap in the face for the disability community.”

The Senate GOP plan comes two months after Democrats passed their own bill in the House of Representatives. That $3 trillion measure was widely praised in the disability community for featuring $13 billion in additional federal funding to states to pay for Medicaid home- and community-based services and added benefits for direct support professionals.

VOR is urging Congress to increase funding in the current COVID Relief Bill equitably, to ensure the health and well-being of people in HCBS settings as well as ICFs, and to provide for the frontline caregivers in all settings.

All people with I/DD, and all Direct Support Professionals, will require additional funding to cover COVID-19 testing, PPE, overtime costs and "Hero Pay", and other expenses incurred during the pandemic, regardless of the setting or the funding streams that pay for I/DD services.

Again, we ask that you sign on to the Action Alert above.

Thank you!
Senate GOP's COVID-19 Response Sets Up Battle Over Medicaid By Jessie Hellman, The Hill, July 28, 2020

The Senate didn’t include a funding increase for Medicaid in its COVID-19 response bill, ignoring pleas from both Democratic and Republican governors and teeing up a contentious fight with the House over spending on the health care program for the poor.

Governors facing massive budget shortfalls caused by the economic downturn have warned they will have to cut Medicaid and other programs if they don’t get more help from Congress, but those warnings did not sway Senate Republicans, who have resisted what they say would be “bailouts” of state and local governments.

“At the end of the day, it’s got to be in there,” said Matt Salo, executive director of the National Association of Medicaid Directors (NAMD).

“We’re in this perfect storm of hurt. ... The only way to get out of it — states are not able to get out of it because states can’t print money and states have to balance their budgets — the only way out of this is aggressive, concerted, federal, congressional action.”
Medicaid — which is jointly paid for by states and the federal government — covers about 70 million people, but enrollment is expected to increase as people lose their jobs and become newly eligible for the program.

States are also facing increased costs from paying for COVID-19 treatment and services for beneficiaries.

At the same time, tax revenue is falling, leaving massive budget holes that states are required to fill.
During recessions, governors and state legislatures tend to cut costly programs like Medicaid, which consumes about 20 percent of state budgets.

To avoid cuts, groups like NAMD and the National Governors Association (NGA) want Congress to temporarily increase the share of Medicaid costs paid by the federal government, to help cover increased enrollment costs and to free up state money for other areas like education.

A COVID-19 response bill recently passed by the House would increase the share of Medicaid costs paid by the federal government, but it has not been considered by the Senate.

Now House and Senate negotiators will have to hammer out a compromise in a final package that Congress hopes to pass in the coming weeks.

“There is increasing recognition that something needs to get done,” Salo said.

Providers Spending Hundreds of Thousands on Testing, PPE - ‘We have been in a fight for our lives’
By Danielle Brown, McKnight's Long-Term Care News, July 30, 2020

Long-term care providers took their complaints about lack of pandemic support to new heights Wednesday as they urged lawmakers to push for additional resources for operators as the next coronavirus relief package is finalized. Some of the providers reported spending hundreds of thousands of dollars to test residents and staff.

“Our members are spending an average of over $67,000 per month on PPE related to COVID — out of their own pockets without any additional financial support,” Pam Koester, LeadingAge Arizona CEO, said during a press conference Wednesday.

She added that extended wait times for testing has forced several providers to arrange and pay for testing on their own in order to get the results back in a more timely, safe manner.

“To date, our members have spent over $600,000 — again out of their own pockets without reimbursement — on testing their residents and staff. This is not sustainable,” she said.

The LeadingAge press conference comes on the heels of Senate GOP leaders’ proposed $1 trillion relief package. Providers called on Congress to include additional funding for providers, sufficient testing, PPE and hero pay for workers in the latest relief package.

In Florida, the pandemic’s impact on long-term care was equated to a Category 5 storm.

“The COVID storm is already here,” said Steve Bahmer, president and CEO of LeadingAge Florida. He noted that the operating losses for Florida providers have ranged between $100,000 and $3 million per month thanks to revenue declines and increased costs for staffing, PPE and testing. “That path is clearly unsustainable.”

It took up to 17 days for Sun Health, an Arizona-based senior living provider, to get testing results back during the peak of the pandemic in Arizona, according to Bhakti Gosalia, the company’s vice president of operations.

July 26, 2020 was the 30th Anniversary of the Americans with Disabilities Act (ADA)
Opinion: Autism Should Be Covered by Americans with Disabilities Act
By Wendy Ross, The Philadelphia Inquirer, July 24, 2020
Imagine: Your child has aged out of pediatric health care. The past few days, her behavior has become unpredictable. You are not sure what is wrong. You take her to the doctor. The lights are harsh, and it is loud. The care team addresses her, but she does not respond as expected. When they try to examine her without warning, she lashes out. You leave, and the bus ride home is another challenge, with overwhelming sights and sounds. The next day, her appendix bursts. Your daughter has autism. In settings designed for medical care, nothing is designed for her.

Thirty years ago, the Americans with Disabilities Act (ADA) was signed to protect people who are disabled from discrimination, affording similar protections found in the Civil Rights Act of 1964, which made discrimination based on race, sex, religion, and other characteristics illegal. Since
then, guidelines help ensure public places are accessible to people with physical disabilities.

Although the ADA also protects those with chronic medical conditions and mental health issues, there are fewer evidence-based regulations for these less visible conditions — and none for autism. It is past time that Congress amend the ADA to encompass neurodiverse individuals as well. More than that, the neurodiverse community must have a seat at the table to participate in the process of amending the legislation.

State News:
OPINION: COVID Pushes Medicaid to the Brink in Colorado
By Erin Egan, Colorado Politics, July 29, 2020

As Congress debates how to provide additional relief to Americans during the pandemic, it is essential that the next coronavirus relief bill provide support to frontline workers and the people we care for in Colorado by  increasing funding for Medicaid. This funding is essential to ensure we’re delivering quality care and saving lives.

I often work with seniors living in long-term care facilities who rely on Medicaid. I see what patients need, what caregivers need, and what makes people anxious and afraid during the COVID pandemic. I have been using the same N95 mask for a month, and will use the next one for a month before I replace it. My patients have been unable to see their families for months now. They are lonely and anxious, and their only direct contact is with the people who care for them. I see what our elderly and vulnerable family members and loved ones need, and I am afraid to imagine what will happen if fewer resources are available

Funding Colorado’s Medicaid program lets health care workers do our jobs, save lives, and provide comfort to the people who need us. Medicaid also provides coverage for people hit hardest by the pandemic. The ongoing economic downturn has pushed Medicaid to its limits, and Medicaid program enrollment is projected to grow upwards of half a million people, as people lose their jobs and lose their health care coverage.

In addition, health care workers are already experiencing more shortages of critical personal protective equipment (PPE) and any cuts to Medicaid would mean fewer resources to protect the health of patients and providers. Being afraid for our own safety can mean caregivers are less able to care for their patients with the close contact and personal care each patient deserves. The rate of infection among caregivers is high, and we put our own families at risk to care for the vulnerable.

Cuts to Medicaid can result in reductions to safe staffing and other things that ensure people receive quality care in residential facilities. Nursing homes, assisted living, and intermediate care facilities desperately need help from the federal government to obtain sufficient supplies and personal protective equipment to protect their residents. People reside in these medical facilities because they need care and assistance, often as a result of a medical condition that makes them vulnerable to illness. They are living in groups with other people who are vulnerable, and nursing home/long-term care facilities accounted for over 40% of all COVID deaths. There is no group more in need of attention and resources than this group at this time.

Opinion: Surges in COVID-19 Cases are Pushing Iowa’s Medicaid Program to the Brink
By Dr. Glenn Hurst, Carroll Times-Herald, July 30, 2020
Adequately funding Iowa’s Medicaid program helps to equip health care workers to do our jobs and save lives. The ongoing pandemic has pushed Medicaid to its limits as more and more Iowans rely on the program and health care workers are already experiencing more shortages of critical personal protective equipment (PPE).

As Congress debates how to provide additional relief to Americans during the pandemic, any final package must provide support to frontline workers and the people we care for in Iowa, by increasing funding for Medicaid in the next federal coronavirus relief package. Financial relief is essential to ensure we’re delivering quality care and saving lives.

More than 682,000 Iowans receive their health care through the Medicaid program, including 331,000 children. Medicaid is a lifeline for them and ensures that they have access to high-quality health care in the midst of the biggest public health crisis in modern memory.

Additionally, seniors living in nursing homes, who rely on Medicaid, should not have to worry about cuts to Medicaid that can result in reductions to safe staffing and quality care in nursing homes amid a pandemic. Forty-eight percent of seniors living in nursing homes rely on Medicaid, and nursing homes depend on Medicaid for 75 percent of their revenue. Nursing homes, assisted living and intermediate care facilities desperately need help from the federal government to obtain sufficient supplies and personal protective equipment to protect their residents.

Health care workers have no choice but to reuse disposable PPE due to its scarcity. Nursing homes, assisted living and intermediate care facilities desperately need help from the federal government to obtain sufficient supplies and personal protective equipment to protect their residents. We cannot leave behind our most vulnerable populations just because of our government’s lack of political will to adequately fund Medicaid.

Iowa - Auditor Report: Iowa Medicaid Providers Unhappy with Privatization
By Caroline Cummings, CBS2 News, July 28, 2020
More than half of Iowa Medicaid providers surveyed by the state auditor’s office say privatization has harmed or impeded the quality of care to patients, according to a new report.

State Auditor Rob Sand released a report Monday with the findings of a survey he conducted asking health care providers about their experiences with Iowa’s Medicaid program, which provides health care for more than 700,000 poor and disabled Iowans. The system has been managed by private companies since 2016 when then-Gov. Terry Branstad moved to shift control from the fee-for-service model under the Department of Human Services to privatization.

He sent the survey to a random sample of 2,500 health care providers across several medical professions and 813 responded. 51.5% felt privatization had negatively impacted the quality of care while just 6.1% felt privatization had been beneficial.

Similarly, 54% reported they believed the privatization of Medicaid has harmed or impeded member access to care, while 9.8% said it improved or facilitated access to care. Favorability or satisfaction was higher among professions like chiropractic and optometry, Sand notes.

“When Medicaid was privatized, Gov. Branstad said that it would decrease costs, improve access and improve quality," Sand told reporters during a news conference. "This report is one attempt to take a look at access and quality as well as some figures related to cost from a provider perspective.”
Those that participated in the report provided Medicaid services under the old fee-for-service model and under the current managed care model.
Sand also surveyed 120 hospitals with 71 responding because hospitals are an "integral part of their local healthcare systems."

Nearly 83% the hospitals responding reported they were either extremely dissatisfied or dissatisfied with managed care organization's timeliness and accuracy of payment for services.

91.4% of the hospitals responded settling claims is a more complex process, which is why Sand recommends that DHS "consider the viability of establishing a single set of policies, procedures, and requirements to be implement by all current and future MCOs with which contracts are established."

There are two managed care organizations in Iowa: Iowa Total Care and Amerigroup. Two others have departed the privatized program since its inception.

VOR opposes Managed Care for Long-Term Services and Supports under Medicaid. For more information on this issue, Click here for a presentation from VOR's 2019 Annual Meeting
Arizona - Feds Give Nursing Homes $5 Billion; Assisted Living Facilities Left Out

By Kathy Ritchie, KJZZ Radio, July 24, 2020

On Wednesday, President Donald Trump announced his administration will provide $5 billion to help nursing homes deal with the coronavirus. But, assisted living facilities will not be receiving any federal money.

Assisted living facilities in Arizona are regulated by the state. And during the pandemic, they have not received any federal dollars for testing, leaving it up to the facility to cover the costs.

"If you want testing done weekly, we must have help," she Karen Barno, CEO of the Arizona Assisted Living Federation of America. "Right now, and I can only speak for Arizona, a lot of our assisted living centers are testing the residents themselves because it's their job, their mission, to protect the residents."
But the coronavirus is expensive. Testing can be costly, so is personal protective equipment, which has also been difficult to obtain. The state department of health said earlier this month that it will start testing residents and staff at assisted living facilities, though it’s unclear if that will be ongoing.

Arizona - Maricopa County Changes How It Defines Long-Term Care
By Kathy Ritchie, KJZZ Radio, July 28, 2020

Earlier this month, Maricopa County Public Health announced it changed how it defines long-term care.

This reclassification means the total number of coronavirus cases has also changed.

The county now defines a long-term care setting as a nursing home, an assisted living facility, an intermediate care facility and a hospice.

The county is no longer counting cases that come from group homes, shelters and detention facilities.

The reclassification also changed the total numbers of coronavirus cases. As of last week, there were about 1,000 fewer cases, and it also dropped the number of deaths by eight.

VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 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. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


VOR is concerned about the following bills because they only cover HCBS proivders, and because the sponsors of the bills have consistently fought against ICFs as part of the continuum of care in I/DD services.

H,R. 6305 & S. 3544 - Coronavirus Relief for Seniors and People with Disabilities Act of 2020 - Bill provides FY2020 supplemental appropriations to the Centers for Medicare & Medicaid Services for specified quality improvement and laboratory certification activities. The funds are designated as an emergency requirement, which exempts the funds from discretionary spending limits and other budget enforcement rules.
In addition, the bill (1) temporarily requires state Medicaid programs to provide Medicare cost-sharing assistance to certain individuals who qualify for, or are enrolled in, the low-income subsidy program under the Medicare prescription drug benefit; and (2) authorizes a grant program to support Medicaid home- and community-based services during the public health emergency.


H.R. 6045 & S. 3669 - 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. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

H.R. 2417 - 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. 1379 & S. 560 - Ensuring Lasting Smiles Act - To require that group and individual health insurance coverage and group health plans provide coverage for treatment of a congenital anomaly or birth defect. (i.e. Cleft palate, ectodermal dysplasia, etc.)


During the COVID-19 Pandemic, Health Care Providers have been relying increasingly on Telehealth Services. Members of Congress have proposed a number of bills to learn more about telehealth services, with a possible eye toward expanding these services into our broader system of health care.

VOR has been following the expansion of telehealth, especially how incorporating these services into treatment of people with I/DD might change our delivery systems. Telehealth has the potential to improve care for some people with poor access to professional care, or it could be used as a less-expensive substitute for in-person treatment and quality professional care.

Current Telehealth bills in the 116th Congress include:

H.R. 6474 - Healthcare Broadband Expansion During COVID-19 Act - To provide for the expansion of the Rural Health Care Program of the Federal Communications Commission in response to COVID–19, and for other purposes.

H.R. 7078 - To study the effects of changes to telehealth under the Medicare and Medicaid programs during the COVID-19 emergency.

S. 3999 - A bill to amend title XVIII of the Social Security Act to simplify payments for telehealth services furnished by Federally qualified health centers or rural health clinics under the Medicare program, and for other purposes.

S. 3999 - A bill to amend title XVIII of the Social Security Act to ensure access to mental health and behavioral health services furnished through telehealth under the Medicare program.

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]
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
If you would like to receive VOR's Action Alerts, General Announcements, or information about your membership but not receive the Weekly Newsletter, please select "Update Profile" below.

If you select "Unsubscribe" you will be removed from all of these lists.
Please don't unsubscribe!


If you have not received the newsletter and you think you have been unsubscribed in error, please write to [email protected] to re-subscribe.