July 14, 2023

VOR's 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


The Direct Care Workforce Crisis

We would like to begin this week's newsletter with a focus on the Workforce Crisis - the shortage of caregivers for people with intellectual and disabilities, autism, the aging community, and those with medical conditions that require home care or treatment in residential facilities, including skilled nursing facilities and nursing homes. This workforce includes nurses, nurses' aides, and Direct Support Professionals (DSPs) who serve in any number of positions, providing both general care and highly specialized services.

As we all know, the main factors contributing to the shortage of workers in this field are

  • Low wages
  • Lack of benefits
  • Long hours (including covering extra shifts when no one shows for the next shift)
  • Lack of recognition as a health care professional
  • Poor morale, resulting from all of the above

The crisis is worsening. We have elected a congress that places party loyalties above legislative responsibilities, that refuses to prioritize our needs above those of more influential industries, special interests, political donors, and lobbyists, and that is having trouble coming to terms with funding anything, even the costs of our own government.

DSP wages, in particular, are tied to the federal minimum wage, which stands at $7.25 per hour. (Think of that in terms of feeding, clothing, and housing a family of four.) As a result of this low wage, most states have been forced to take on a greater share of the financial burden of raising DSP wages to meet their minimum wage levels, or to exceed them slightly in an attempt to make them competitive with fast food chains and big box outlets, but state governments cannot continue to shoulder this financial strain. The federal government must take responsibility for the fact that is has allowed the care industry to rely on an underpaid workforce since the development of privatized care and the HCBS system.

Presidential administrations, government agencies, and congress have all been kicking this can down the road for decades. And we all know that if you can only kick a can down the road for so long before it winds up in a ditch.

In April, the President issued an Executive Order to address the crisis, but since Congress is responsible for appropriations, it lack the one essential ingredient - funding. (See the Executive Order here) (Download a factsheet from PHI regarding the order and the needs of Direct Care Workers here)

What is VOR doing about this?

For the past several months, VOR has been working in a coalition with other advocacy groups to ask congress to address this crisis. Some of these organizations have been long standing allies, others have had no interactions with VOR, as they represent different cohorts (like the aging community), and some have been opposed to VOR's views on choice and a full continuum of care, having insisted that everyone does better in HCBS settings. For the time being, we have dropped our differences in hopes of bringing attention to this issue. That's what people do in a crisis, when they realize that we are all going down together if we don't speak as one.

Our coalition has been making calls to members of Congress and to congressional committee staffers on the Workforce Crisis issue. In addition, VOR's Executive Director Hugo Dwyer, President Joanne St. Amand, and other members of VOR's board and membership have been working with our Legislative Advisor Gayle Gerdes to address this issue.

What can you do?

In August, Congress will be on hiatus. Some members will be on vacation, but most will be back home, in state or in district. This is a perfect opportunity to make an arrangement to meet with your Representative and your two Senators to discuss the workforce crisis. Be sure to invite them to visit your loved one's residential facility, day program, sheltered workshop or other employment opportunity.

To find contact information for your Representative, please go to:


To find contact information for your Senators, please go to:


National News:

Biden’s Long-Term Care Agenda Faces Headwinds

By Jessie Hellmann, CQ-Roll Call via Disability Scoop, July 14, 2023

 President Joe Biden has made it a major policy goal to improve long-term care options for older adults and people with disabilities by improving the working conditions of the people who care for them.

Two separate but interconnected proposals would require minimum staffing requirements in nursing homes and require that 80% of Medicaid payments for home and community-based services go toward compensating direct care workers.

But the problem with those proposals, say some lawmakers, state officials and those in the industry, is that they’re not realistic as long as workforce shortages continue and low Medicaid reimbursement rates remain in place.

Meanwhile, advocates for the people who use those services say the money is available, but staffing is kept low and workers are underpaid to boost profits.

The truth, said David Grabowski, a long-term care expert and health care policy professor at Harvard Medical School, is probably somewhere in between. “Both sides are right,” he said. “There is a shortfall in Medicaid, and providers play a lot of games.”

Research has consistently demonstrated that low staffing levels lead to worse outcomes for patients, and workforce shortages in both home and community-based settings are leading to delays in care, with people being turned away from badly needed services.

“These are the frontline workers who we call heroes. Until we address those inadequacies in benefits and pay and treatment, we’re going to continue to have understaffing,” said Sam Brooks, director of public policy for The National Consumer Voice for Quality Long-Term Care.

The Centers for Medicare and Medicaid Services is expected to soon release its long-awaited proposed rule setting minimum staffing levels in the nation’s 15,500 nursing homes after Biden previewed the regulations in last year’s State of the Union address.

The proposed rule is currently being reviewed by the Office of Management and Budget and is expected to be released this summer. The agency is meeting this week with the American Hospital Association and National Rural Health Association.

The nursing home industry, led by the American Health Care Association, is lobbying extensively against a minimum standard, calling it an unfunded mandate and noting low Medicaid rates, a historic departure of workers during the COVID-19 pandemic who left for higher-paying jobs in other industries and nursing home closures.

“A staffing mandate will not create applicants. And when nursing homes cannot meet this impossible standard, they will have to reduce the number of residents they serve or close entirely, exacerbating the current access-to-care crisis we’re already seeing unfold,” an AHCA spokesperson said.

Home and Community-Based Services:

The Biden administration also recently proposed a rule that would require that 80% of Medicaid payments for homemaker, personal care services and home health aide services go toward paying direct care workers, aiming to improve wages and attract more people to the field.

Those efforts come after Congress rejected Biden’s request for $400 billion in additional funding for home and community-based services — services that help older adults and people with disabilities stay in their homes — in his domestic policy package that passed last year.

Now that Democrats no longer have control of Congress and Republicans are calling for budget cuts, it’s even less likely that Congress will increase funding for such programs. That leaves Biden to pursue regulation, which doesn’t typically come with new money.

The goal, the administration said, is to address the “inextricable link between sufficient payments being received by the direct care workforce and access to and, ultimately, the quality of” home and community-based services.

Nationally, home health workers, including workers who do clinical work, make about $14.87 an hour, according to the Bureau of Labor Statistics.

The average reimbursement for personal care services is $23.09 per hour in the 22 states that report that data, and $119 per hour for home health agency services in the 20 states that report that data, according to KFF, a health care think tank formerly known as the Kaiser Family Foundation.

But that is the amount paid to the agency and not necessarily what the worker would receive as a wage.

Supporters of the rule, like Brooks, said 80% should be doable for providers since the vast majority of the service they provide is through direct care workers.

But providers say Medicaid rates don’t support higher wages.

Read the full article at Disability Scoop If you don't subscribe to DS, or have read your 5 free articles,

you may Read the full article here at Roll Call

AHCA to White House: Nursing Home Staffing Mandate Spells ‘Disaster’   

A federal nursing home staffing mandate would be “impossible to implement” and a “disaster,” especially for seniors on Medicaid, the American Health Care Association/National Center for Assisted Living warned in a letter sent to President Biden Tuesday.

President and CEO Mark Parkinson reiterated the association’s serious concerns regarding an expected federal staffing mandate, once again highlighting historic labor shortages and unabating financial pressures in a system primarily supported by government payers.

“If your administration imposes this mandate, more nursing homes will close, especially facilities that uniquely serve our most vulnerable,” Parkinson wrote. “Nursing homes that primarily care for residents on Medicaid won’t have the resources to recruit staff or pay for this mandate. Those facilities, as well as those who they serve and employ, will be hurt the most. To reiterate, this policy will have the opposite impact than intended. The unintended consequences will be numerous and damaging to the nation’s ability to serve seniors in need.”

The White House Office of Management and Budget continues to review a rule drafted by the Centers for Medicare & Medicaid Services. It was expected to be released this spring, but has been under review since May 30. OMB previously met with leaders from AHCA and LeadingAge. Such advisory meetings continued this week, with input being provided by the National Rural Health Association on Monday and the American Hospital Association on Tuesday.

As he sought to turn up the heat on decision-makers with Tuesday’s letter, AHCA’s Parkinson referenced more than 500 pandemic-era closures, highlighting that more than 40% of those were among four- and five-star rated facilities. He said the nursing shortage would make a new staffing mandate “impossible to implement,” requiring the hiring of 191,000 additional caregivers, including more than 44,000 RNs.

“It is hard for facilities to find one nurse,” he wrote. “The assumption that there are tens of thousands available to hire is preposterous.”

Parkinson also cautioned against viewing home- and community-based services as a turn-key alternative to nursing home care.

“The decreasing availability of nursing home care cannot be replaced by home and community-based services (HCBS),” he wrote. “Not only do nursing home residents require around-the-clock clinical care, but HCBS programs are not equipped to care for this influx of displaced seniors. The home care workforce faces similar labor challenges and has not kept pace with the increasing demand for HCBS.”

Parkinson again called on the White House to more seriously consider a series of “21st century” solutions, including immigration reform that would allow foreign-born aides and nurses to help nursing homes fill the 190,000 jobs still open after pandemic losses and add new roles.

“Nursing home residents deserve excellent, customized care, and we need to support and grow our workforce,” Parkinson wrote. “Given the acute nature of the long term care workforce crisis, we need a concerted effort for our profession. We hope to work hand in glove with your Administration on these targeted approaches to rebuild and strengthen the long term careforce. It’s not too late to reconsider this staffing mandate proposal and refocus on more meaningful solutions.

“It’s time to work together on real solutions. We all want better care in nursing homes. Let’s not make things worse in our efforts to improve.”  

The full article with links, is available here

Changes Underway In Military’s Exceptional Family Member Program

By Rose L. Thayer, Stars and Stripes via Disability Scoop, July 11, 2023

Policy changes announced recently to a U.S. Department of Defense program that assists troops who have family members with special needs could result in some military families gaining services while others lose them, Pentagon officials said.

Changes to the Exceptional Family Member Program revealed in late June — more than two years after Congress mandated changes — were established so each service branch has similar standards and guidelines to track performance and improve oversight.

Previously, the military services implemented the program on their own, which has led to an uneven distribution of support, particularly when it came to resources such as access to legal support, respite hours for caregivers and relocation services. As the new policy evens out across each military service, access to some resources will change.

The Defense Department also will hire more support staff to manage the changes as they are phased in during the next 15 months.

Roughly 140,500 family members are enrolled in the program across the department.

The new policy, which will be fully implemented by September 2024, stemmed from changes included in the National Defense Authorization Act for fiscal 2021, an annual bill that outlines defense priorities and spending. Congress included the changes after family members testified in February 2020 before the House Armed Services Committee subpanel on military personnel about the challenges that they have faced with the program.


(Also available here through Starts and Stripes)

Most States Fall Short In Special Ed, Feds Say

By Michelle Diament, Disability Scoop, July 10, 2023

The majority of states have failed to meet their obligations to serve students with disabilities for multiple years in a row, a new audit shows.

Just 22 states met requirements under the Individuals with Disabilities Education Act for serving students with disabilities ages 3 to 21 during the 2021-2022 school year.

Meanwhile, the remaining states were designated “needs assistance,” with 22 states and Washington, D.C. earning that label for two or more years in a row. No state was assigned to the lesser categories of “needs intervention” or “needs substantial intervention.”

Under IDEA, the U.S. Department of Education must evaluate each state’s performance in providing special education services annually and assign them to one of four categories. The ratings factor both a state’s compliance with the law and outcomes for children with disabilities and their families, officials said.

If states do not achieve the “meets requirements” threshold for two or more years, the Education Department must take enforcement action, which can include requiring the state to access technical assistance or directing funds to the areas deemed inadequate, among other things.


Medicaid in the News:

Opinion - Biden's Medicaid Cuts Would Hurt Millions of Americans. Democrats Need to Stop Him.

By Tom Reed, USA Today, July 13, 2023

(The author is a former Republican Congressman from New York)

We've heard crickets from national Democratic leaders who were outspoken against the proposed regulations when they were put forward on President Trump's watch.

It's never fun to stand up to a president in your own party. However, it’s often necessary to prevent your side from making mistakes they will come to regret. And Democratic leadership is now badly needed to help save the Biden administration from committing an egregious blunder that would harm millions of vulnerable Americans who rely on Medicaid for their health care. 

In 2020, I joined Republican colleagues in writing to President Donald Trump's Department of Health and Human Services to express our opposition to a proposed Medicaid Fiscal Accountability regulation. We wrote that the rule could result in “total funding reductions of between $37 billion and $49 billion annually,” including a cut of “12.8% to 16.9% of total hospital program payments,” by empowering federal bureaucrats to micromanage the state management of Medicaid from Washington, D.C.  

At the time, our concerns were echoed by a large chorus of Democratic leaders, including Joe Biden and Kamala Harris. In a letter with 26 of her Democratic colleagues, then-Sen. Harris called the rules not only “dangerous” but also “devastating to … vulnerable low-income patients.” The Biden presidential campaign put on its website that he would oppose it. The bipartisan outcry extended to the nation’s governors, who warned that “states may be unable to adequately fund their Medicaid programs.”

Following this strong opposition, the Trump administration wisely forced the federal bureaucrats at the Centers for Medicare and Medicaid Services (CMS) to withdraw the plan.

Unfortunately, that was not the last we heard of the cuts. In February, Biden’s CMS issued a federal bulletin reestablishing the regulations. In April, Texas Attorney General Ken Paxton sued CMS, arguing that it does not have the authority to issue these rules. However, since then, the agency has doubled down, incorporating the requirements into new rules that were proposed in May. 

Enacting severe cuts to Medicaid would not only be a disaster for vulnerable patients across America. It would also be politically damaging for President Biden as we move closer to the upcoming election, especially given his previous statements on the issue.

The president has launched constant attacks against Republicans, accusing them of seeking to cut Medicare, Medicaid and Social Security. Until his administration sends these proposed regulations into the dustbin, he is throwing stones in a glass house.

Democratic members of the Texas and Florida congressional delegations have urged the Biden administration to reverse course. "A policy shift of this significance threatens not only the most vulnerable citizens of our home state, but Medicaid beneficiaries across the country," Texas Democrats wrote in a letter to HHS Secretary Xavier Becerra.


All Hands on Deck: Medicaid Beneficiaries Must Take Action to Keep Their Coverage

By Alison Barkoff, Acting Administrator of the Administration for Community Living and Assistant Secretary for Aging, The ACL Blog, July 13, 2023

We need your help get the word out to people enrolled in Medicaid that they may have to take action to remain covered and that there are steps they can take if they lose Medicaid.

As we’ve discussed on this blog before (on 3/22 and 5/15), at the beginning of the COVID-19 pandemic, significant changes were made to Medicaid enrollment and eligibility rules to prevent people from losing Medicaid coverage during the pandemic. With the end of the federal Public Health Emergency on May 11, 2023, those flexibilities have ended, and all states are resuming their regular processes for renewing individuals’ Medicaid coverage.

Based on data from 28 states and the District of Columbia, Kaiser Family Foundation reports that more than 1.6 million people have been disenrolled from Medicaid as of July 5, 2023. Many of these people may still be eligible for Medicaid but lost coverage because they didn’t return forms (or either they or the state made other mistakes).

It is crucial to make sure everyone covered by Medicaid knows:

  • Over the next 12 months, everyone with health care coverage through Medicaid or the Children’s Health Insurance Program (CHIP) will need to renew their coverage. 
  • What they need to do to avoid losing coverage if they are still eligible.
  • Other options for coverage if they are no longer eligible for Medicaid or CHIP (such as the Affordable Care Act (ACA) Marketplace or employer-sponsored coverage), and how to find help navigating them.

If you’re reading this blog, we need your help to spread the word. If you’re part of the aging and disability networks, your help is particularly important — no one else has your ability to reach disabled people and older adults!

Every Medicaid beneficiary needs to receive these important messages:

  • UPDATE your contact information with your state Medicaid agency NOW.
  • RESPOND to the Medicaid renewal form when it comes in the mail. If you don't, you may lose your coverage even if you are still eligible.
  • PARENTS should respond even if you are not eligible or are enrolled in other coverage. Your children could still be eligible for coverage.
  • CONNECT WITH RESOURCES THAT CAN HELP: If you lose Medicaid coverage and think you may still be eligible, there are programs that may be able to help you appeal the denial of Medicaid coverage or find other insurance. State protection and advocacy systems and legal advocacy organizations funded under the Older Americans Act may be able to help with appeals. Disabled people of all ages can also contact the Disability Information and Access Line (DIAL) for assistance, and older adults can contact the Eldercare Locator to find local assistance.
  • CHECK OTHER OPTIONS: If you are no longer eligible for Medicaid, you should check to see if you can get coverage through your employer or through the Affordable Care Act Marketplace at healthcare.gov. Older adults and people with disabilities who are eligible for Medicare can also find assistance through their State Health Insurance Assistance Program (SHIP). SHIP is a national program that offers one-on-one assistance, counseling, and education to Medicare beneficiaries of all ages, their families, and caregivers to help them make informed decisions about their care and benefits.


Georgia Cuts 95,000 from Medicaid, More Coming

By Ariel Hart, The Atlanta Journal-Constitution, July 13, 2023

More than 95,000 Georgians lost their Medicaid health coverage last month, the state Department of Community Health reported this week, as Georgia finished its second month of requalifying enrollees.

The state’s Medicaid rolls soared as the annual requalifying requirements were suspended during three years of the pandemic emergency. Like other states, Georgia is asking all its 2.8 million beneficiaries to re-apply, and reviewing cases to weed out those who no longer qualify.

Georgia’s rate of disenrollment so far is the fifth highest in the nation among states publicly reporting the data, said an official with the health research nonprofit KFF. The 95,000 dropped were part of a batch of 160,000 it reviewed in June.

Of those who Georgia cut off, the majority might actually still qualify for Medicaid but lost coverage because the state did not receive updated paperwork it requested from them, DCH reported. If people don’t respond to the state’s warning notices and re-file their application, they’re dropped from coverage.

The decision to stop coverage for people because of mistakes or bureaucracy is something federal officials warned states against.

Xavier Becerra, secretary of the Department of Health and Human Services, told state governors in a letter on June 12, “I am deeply concerned with the number of people unnecessarily losing coverage, especially those who appear to have lost coverage for avoidable reasons that State Medicaid offices have the power to prevent or mitigate.”

Medicaid is the government health insurance program for poor children and some poor adults who are elderly, federally declared disabled, or meet certain Georgia work or activity requirements. More than half of Georgia births are covered by Medicaid.

Experts note that the majority affected by the Medicaid unwinding in Georgia are parents and children, because under Georgia rules that’s who qualifies for Medicaid most often.


The following article pertains to Georgia, but should serve as an example to people from other states who need to re-apply or retain coverage:

Cut from Georgia Medicaid Health Coverage? You May Still Be Eligible

By Ariel Hart, The Atlanta Journal-Constitution, July 13, 2023

If you are among the Georgians who lost Medicaid health coverage and you believe this was done in error, the issue could be missing or outdated records.

Like other states, Georgia is asking all its 2.8 million beneficiaries to re-apply, and reviewing cases to weed out those who no longer qualify. The state Department of Community Health said most of the recipients lost coverage because the state did not receive updated paperwork it requested from them.

Steps Medicaid enrollees can take:

Update your contact information with the state.

Each Medicaid enrollee has a “Gateway” account online with the state and should check it now to make sure it has their correct contact information, such as phone numbers and addresses. This is the way Medicaid will communicate the need to fill out new paperwork or notify people about a loss of coverage. People whose contacts have changed could fail to see state notices.

It’s important to note that just because patients have updated their personal information with their doctor’s office or pharmacy doesn’t mean it’s in their Gateway account.


Medical News:

Nearly 1 in 10 U.S. Children Has a Developmental Disability: CDC

By Cara Munez, US News Health Day, July 13, 2023

More kids in the United States are getting a developmental disability diagnosis, with prevalence close to 9% in 2021, the U.S. Centers for Disease Control and Prevention reports.

Among 3- to 17-year-olds, 8.56% have ever been diagnosed with a developmental disability, compared to 7.4% in 2019, according to the agency's National Health Interview Survey.

The diagnoses are far more common among boys than girls. More than 1 in 10 boys had an intellectual disability, autism spectrum disorder or any other developmental delay in 2021, the researchers reported.

Most of the increase fell into the category of "any other developmental delay," a broader category that includes speech disorders and learning disabilities.

This report is the first released by the CDC’s National Center for Health Statistics (NCHS) since it looked at trends between 2009 and 2017.

"Timely estimates are necessary to assess the adequacy of services and interventions that children with developmental disabilities typically need," wrote Benjamin Zablotsky, a statistician for the NCHS, and colleagues.

The report also noted that boys were more than three times as likely as girls to be diagnosed with autism spectrum disorder.

From 2019 to 2021, researchers found that rates of intellectual disability or autism spectrum disorder did not have a statistically significant increase, with almost 2% of children having an intellectual disability and 3% having autism. But reports of children having any "other developmental delay" rose from about 5% in 2019 to about 6% in 2021.

"A lot of times developmental delays might be temporary diagnoses that evolve into something like autism, potentially, or intellectual disability. But also a lot of times children do age out of those," Zablotsky said in a CBS News report.

Among the other findings:

  • Asian children had less prevalence of any developmental disability compared to other races and ethnicities.
  • Prevalence of intellectual disability increased with age. Prevalence of “other developmental delay” decreased with age.
  • Rates of developmental disability for girls were just over 5%, much lower than for boys at nearly 11%.

Maureen Durkin, chair of University of Wisconsin-Madison's department of population health sciences, noted the constant increase in diagnoses with each survey. Durkin has previously pointed to improvements in diagnosing children, CBS News noted.

Durkin noted improvements in care for newborns and increases in life expectancy for children born with Down syndrome.

Among the changes seen in recent years are that white children no longer have the highest rates of autism. In 2021, Black children had the highest rates.

Read the full article here

Pediatricians Get Guidance On Assessing Kids At Risk For Developmental Disabilities

By Michelle Diament, Disability Scoop, July 14, 2023

New guidance is spelling out how pediatricians should monitor young children who are at especially high risk for developmental disabilities.

In a clinical report published in the July issue of the journal Pediatrics, the American Academy of Pediatrics is offering up a framework for primary care pediatricians on treating premature infants.

Some 1 in 10 babies are born before 37 weeks gestation and considered premature, leaving them with greater odds of developmental issues, according to the pediatrics group. But, once they leave the neonatal intensive care unit, most of these children rely on general practice pediatricians exclusively.

The guidance, which is based on research over the last 20 years on preterm outcomes, encourages primary care pediatricians to take a more active role in assessing development and in connecting children with both medical and community supports.

“Although a substantial amount of literature addresses severe neurodevelopmental disabilities associated with preterm birth and its complications, such as cerebral palsy, intellectual disability (ID), visual impairment and hearing loss, extrapolating large studies about the risk and clinical decision-making for individual patients can be challenging,” the guidance states. “This clinical report links preterm birth and its complications to early childhood developmental disability prevalence data and consolidates them into an easy-to-use, point-of-care framework that supports pediatricians with enhanced childhood surveillance and clinical decision-making for infants born preterm.”


State News:

Can Managed Care Reel in Idaho’s Spiraling Medicaid Costs?

By Marc Joffe, The CATO Institute, July 13, 2023

Recent years have brought significant changes to Idaho public finances. In addition to rapid increases in population and tax revenue, the state experienced a sharp increase in its Medicaid costs. Legislators, worried that a continued escalation could jeopardize the state’s robust fiscal health, created a task force to investigate whether the state could better control Medicaid spending growth by implementing managed care. While switching beneficiaries from traditional fee‐​for‐​service coverage to managed care is intuitively attractive, it may not be the right choice for Idaho policymakers in 2023.

The accompanying figure shows the state’s actual costs for the ten fiscal years ending FY 2022, a near final estimate of FY 2023 expenditures based on a review of remittances from the State Controller’s Transparent Idaho platform, and budgeted amounts for FY 2024. The most rapid cost escalation occurred since FY 2020.

According to the Centers for Medicare and Medicaid Services, Idaho Medicaid enrollment soared from 242,000 in December 2019 to 419,000 in March 2023, the last month for which data are available. Although some of this growth may be linked to migration into the state, two other factors were more critical. First, Idaho implemented Medicaid expansion at the beginning of 2020, allowing all adults with incomes up to 138% of the federal poverty level to join the program. Second, the federal government prohibited states from removing beneficiaries who no longer qualified for the program from the Medicaid rolls during the COVID public health emergency. This prohibition ended in April and Idaho should be able to reduce its beneficiary count in the coming months by conducting systematic eligibility redeterminations.

So, it is reasonable to conclude that Idaho’s Medicaid cost growth is more the result of an expanded enrollment base than of rising costs per enrollee, which is the problem managed care is supposed to address. Managed care promises to lower costs by restricting and coordinating a plan member’s use of medical services. Instead of seeing any provider that accepts coverage, the enrollee receives care from within the Managed Care Organization’s (MCO) provider network. The MCO receives a fixed “capitation” payment from the state for each covered beneficiary each month.

While Medicaid MCOs can save money by restricting the range of available providers, they cannot use a second lever that MCOs usually rely upon in the private insurance market to control costs: patient responsibility payments. Federal policy generally does not allow Medicaid MCOs to impose copayments or deductibles. As a result, Medicaid patients have no financial disincentive to seek medical care.

Two other factors militate against the ability of Medicaid managed care to yield significant savings. First, the MCO must cover its costs and earn a profit for its owners (and even a not‐​for‐​profit MCO can be expected to pursue revenues greater than expenses to build internal reserves). The largest for‐​profit Medicaid MCO, Centene Corporation, reported a $2 billion pretax profit on $145 billion in revenue for 2022. This is a modest profit margin, but the company also had $12 billion in selling, general and administrative expenses. (These amounts are company‐​wide totals including Centene’s Medicare and private plan management activities, as well as its Medicaid Managed Care services.)

A second consideration is that MCOs are compensated for inactive Medicaid enrollees. If someone on Medicaid gets other coverage, he or she may start using that alternative coverage without advising the state Medicaid office. The individual thus remains on the rolls even though he or she is not using services. Under a fee‐​for‐​service model, this is not an issue from a state budgeting standpoint because the individual does not generate any provider claims. But if that same individual is in managed care, the MCO will continue receiving per member per month (PMPM) payments until the state determines that he or she is no longer eligible.

There is some evidence that this latter effect can be large. In response to a public records request, a Los Angeles‐​based publicly owned Medicaid MCO told this author that 327,000 or 29% of its 1.125 million members did not receive any services during the 2021–22 fiscal year. The proportion of inactive beneficiaries may have been especially high that year due to the federal prohibition on redetermining eligibility discussed earlier.


North Carolina Medicaid Managed Care for People with Mental Illness and Disabilities Delayed Again

Associated Press, Jyly 11, 2023

North Carolina’s planned managed care program for Medicaid enrollees who also need services for behavioral health or intellectual or developmental disabilities is being delayed again by state officials.

The start date for these “tailored plans” that will cover roughly 160,000 people had been last Dec. 1. The state Department of Health and Human Services then pushed back its implementation to April 1, then to this coming Oct. 1.

DHHS announced Tuesday that it wouldn’t meet the October start date either, but this time didn’t give a new date, saying it was “still to be determined.” 

In July 2021, the state moved two-thirds of North Carolina’s then-2.5 million Medicaid recipients from a traditional fee-for-service system to one in which several statewide health plans and one multiregional plan received monthly payments for each patient they enrolled and treated. But such changes were postponed for people with severe disabilities and mental health needs, for whom a complicated array of conventional care and specialized services are needed. 

Read the full article here

We Still Need the Subminimum Wage and Work Opportunities for People with Intellectual Disabilities

By David Kassel, The COFAR Blog, July 13, 2023

We are hoping we can help the members of the Massachusetts congressional delegation understand the severity of the problem caused by the lack of meaningful employment opportunities for people with intellectual and developmental disabilities (I/DD) in this state.

On June 27, we held a Zoom meeting with an aide to Senator Elizabeth Warren to discuss that problem and the decline of the state’s two remaining Intermediate Care Facilities (ICFs) as options for residential services. That latter issue will be a subject for another blog post.

Among those attending was Jim Durkin, legislative director for AFSCME Council 93 in Boston. Also attending was Patty Garrity, whose brother Mark, is one of potentially thousands of clients of the Department of Developmental Services (DDS) who are facing a lack of meaningful work activities in their day programs.

Unfortunately, when it comes to providing employment for people with I/DD, most members of Congress appear to be heading in the wrong direction. For years, members of the state delegation have supported legislation that we think would effectively discourage such opportunities.

While Senator Warren, in particular, has been a strong voice for workers, she has also unfortunately been out front in mistakenly opposing the payment of subminimum wages to people with disabilities in congregate and other work settings.


Back Issues of VOR's Weekly Newsletter are available on our web site.

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VOR Bill Watch:

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S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.


S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.


S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.

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