More Than Half a Million People in the U.S. Are On Waiting Lists for Medicaid Home- and Community-Based Services

Other Findings From Our 50-State Survey of Medicaid HCBS Programs Focus on How States Are Responding to Chronic Workforce Shortages That Were Exacerbated by the Pandemic

About 656,000 people across the country were on state waiting lists for home and community-based services financed through Medicaid waivers in 2021, finds a new KFF analysis. But such waiting lists are an incomplete and often inaccurate measure that can both overstate and understate unmet need.

The data about waiting lists are among the latest findings from the 20th KFF survey of state officials administering Medicaid HCBS programs in all 50 states and Washington DC.

Waiting lists can sometimes overstate the need for services because not all states screen for Medicaid eligibility before adding people to their lists, which inflates the numbers with people who may never be eligible for services. In all years since 2016, over half of people on HCBS waiting lists lived in states that did not screen people on waiting lists for eligibility, the new analysis found. This also is a key reason that waiting lists are not comparable across states.

Waiting lists can also understate need. They reflect the populations a state chooses to serve, as well as the resources it commits. In many cases, people may need additional services, but because the state doesn’t offer them—or doesn’t offer them to specific populations, such as people ages 65 and older—they would not appear on a waiting list.

HCBS waiting lists remain a source of concern to policymakers and proposals to eliminate them have been put forth by both Republicans and Democrats.

Many of the other findings from the 50-state survey focus on chronic workforce shortages that were exacerbated by the COVID-19 pandemic and are the biggest challenges facing state Medicaid HCBS programs. Key takeaways from that analysis include:

  • Amid the pandemic, HCBS workforce shortages have contributed to provider closures. Most states (44) reported a permanent closure of at least one Medicaid HCBS provider during the pandemic, up from 30 states in 2021.
  • Almost all states (48) responded to the workforce crisis by increasing HCBS provider payment rates. States also increased self-directed and family caregiving opportunities for HCBS beneficiaries. All states offer at least one HCBS program with the option for enrollees to self-direct their services. Forty-eight states allow legally responsible relatives to be paid caregivers, up from 36 states in 2020.
  • When asked how they used temporary funding from the American Rescue Plan Act of 2021, over two-thirds of states (35) reported initiatives with high start-up costs that were generally time-limited to avoid higher ongoing costs after the enhanced federal funding ended. Some of the most common initiatives included offering providers bonuses or incentive payments to stay on, developing or expanding worker training or certification programs, and upgrading IT systems.

The full analyses of the survey findings are available here:

For more data and analyses about Medicaid HCBS, visit kff.org.

Communities seeing rapid increase in flu activity across the U.S.

The Washington State Department of Health (DOH) wants the public to know flu cases are rising quickly in Washington state and nationwide. Flu hospitalizations are at the highest rates seen in 10 years for this point in the year. In the last two weeks, DOH is reporting high cases of flu-like illnesses in Washington.

Flu illness can have serious health consequences, especially for people who are under five years old, age 65 or older, pregnant, immunocompromised, or have chronic health conditions.

In addition to the flu, other respiratory illnesses, such as COVID-19 and RSV, are combining to push our hospitals to emergency capacity. Help keep yourself and your community healthy by getting a flu vaccine and taking other measures to prevent illness.

“Our state’s pediatric healthcare system is overloaded with extremely high numbers of children with respiratory infections,” said Tao Sheng Kwan-Gett, MD, MPH, chief science officer for DOH. “Families urgently need to do everything they can to keep everyone healthy and avoid the need for healthcare, and flu vaccination is one of the most important prevention tools.”

Following the proper prevention and hygiene practices can halt the spread of respiratory illnesses. Washington State Department of Health recommends:

  • Get vaccinated. Vaccination is your best defense against flu and COVID-19.
  • Wash your hands frequently with soap and water. Use hand sanitizer when soap is not available, and hands are not visibly soiled.
  • Consider wearing a mask in crowded settings.
  • If you are sneezing or coughing, wear a mask or use the crook of your arm or a tissue to avoid getting germs onto your hands or spreading virus in the air.
  • Avoid close contact with sick individuals.
  • If you feel sick, stay home.

The most common strain so far is influenza A (H3N2). This strain typically causes more severe disease. All available flu vaccines provide protection against H3N2.

DOH strongly recommends everyone aged 6 months and older get the flu vaccine as soon as possible. It takes two weeks for the flu vaccine to be effective making it a key time to get vaccinated before people get together for the December holidays. If you get the flu when you are vaccinated, it’s typically milder and the vaccine can prevent serious complications including hospital care.

The flu vaccine is available at most pharmacies, health care providers’ offices, and clinics. State employees are eligible to receive SmartHealth points for receiving a flu vaccine. The flu vaccine can be received on the same day as the updated COVID-19 updated booster and other vaccines.

Find out more at KnockOutFlu.org.

‘Impending Intergenerational Crisis’: Americans With Disabilities Lack Long-Term Care Plans

Thinking about the future makes Courtney Johnson nervous.

The 25-year-old blogger and college student has autism and several chronic illnesses, and with the support of her grandparents and friends, who help her access a complex network of social services, she lives relatively independently in Johnson City, Tennessee.

“If something happens to them, I’m not certain what would happen to me, especially because I have difficulty with navigating things that require more red tape,” she said.

Johnson said she hasn’t made plans that would ensure she receives the same level of support in the future. She especially worries about being taken advantage of or being physically harmed if her family and friends can’t help her — experiences she’s had in the past.

“I like being able to know what to expect, and thinking about the future is a bit terrifying to me,” she said.

Johnson’s situation isn’t unique.

Experts say many people with intellectual and developmental disabilities do not have long-term plans for when family members lose the ability to help them access government services or care for them directly.

Read the full article from KHN.

People With Long Covid Face Barriers to Government Disability Benefits

When Josephine Cabrera Taveras was infected with covid-19 in spring 2020, she didn’t anticipate that the virus would knock her out of work for two years and put her family at risk for eviction.

Taveras, a mother of two in Brooklyn, New York, said her bout with long covid has meant dealing with debilitating symptoms, ranging from breathing difficulties to arthritis, that have prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security Disability Insurance or other government help — Taveras and her family face a looming pile of bills.

“We are in the midst of possibly losing our apartment because we’re behind on rent,” said Taveras, 32. Her application for Social Security disability assistance, submitted last fall, was rejected, but she is appealing.

Like many others with long covid, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the covid pandemic. People are facing years-long wait times, insufficient legal support, and a lack of clear guidance on how to prove they are disabled — compounded by the challenges of a medical system that does not have a uniform process for diagnosing long covid, according to health experts and disability attorneys.

The Biden administration promised support to people with long covid, but patient advocates say many are struggling to get government help.

The Centers for Disease Control and Prevention defines long covid broadly, as a “range of ongoing health problems” that can last “weeks, months, or longer.” This description includes people, like Taveras, who cannot work, as well as people with less severe symptoms, such as a long-term loss of smell.

Read the full article from KHN.

Patients’ Perilous Months-Long Waiting for Medicaid Coverage Is a Sign of What’s to Come

Korra Elliott has tried to avoid seeing a doctor while waiting to get on Medicaid. She worries she can’t afford more bills without any insurance coverage. But in early March — five months, she said, after applying and with still no decision about her application — a suspected case of the flu sent her blood pressure soaring and landed her in the emergency room.

The 28-year-old mother of four from Salem, Missouri, is among the tens of thousands of uninsured Missourians stuck waiting as the state slogs through a flood of applications for the state-federal health insurance program. Missouri expanded the program last year after a lengthy legal and political battle, and it now covers adults who earn up to 138% of the federal poverty level — about $18,800 annually for an individual.

Missouri had nearly 72,000 pending Medicaid applications at the end of February and was averaging 119 days to process one, more than twice the maximum turnaround time of 45 days allowed by federal rules. Adding people to Medicaid is labor-intensive, and the jobs require training and expertise. The program covers many populations — children, people with disabilities, seniors, adults who are pregnant or have children, and some without children. Different rules dictate who qualifies.

Read the full article from KHN.

Desperate for Cash: Programs for People With Disabilities Still Not Seeing Federal Funds

LILBURN, Ga. — Matthew Southern, 35, who has intellectual and developmental disabilities, is able to stay out of an institution because health aides paid through a Medicaid program assist him and his roommate with ordinary tasks.

But amid a worker shortage worsened by the pandemic, Southern’s father, Dan, has had to step in to fill in gaps in his son’s care by volunteering at their home 45 minutes away from his northwestern Atlanta suburb. He blames the low pay across the industry.

“No one wants to work for $12 an hour,” Dan Southern said. “People can work at Burger King and make more money.”

Last year brought an injection of hope: The federal government, through the American Rescue Plan Act that President Joe Biden signed into law in March 2021, increased funding with a 10-percentage point match that could amount to some $25 billion in federal money for Medicaid home and community-based services, which have long faced staffing crunches. That massive infusion of cash could be used by states to buttress wages, move people off waiting lists for disability services, train more workers, or expand covered services for vulnerable elderly and disabled people, helping to keep them out of nursing homes.

But almost a year later, Indiana, Massachusetts, New York, North Carolina, Ohio, and Washington were among 19 states as of Feb. 17 yet to receive the “conditional approval” needed from the Centers for Medicare & Medicaid Services to fully access the money.

Read the full article from KHN.

Mental Health Therapists Seek Exemption From Part of Law to Ban Surprise Billing

Groups representing a range of mental health therapists say a new law that protects people from surprise medical bills puts providers in an ethical bind and could discourage some patients from care.

The therapists take no issue with the main aim of the legislation, which is to prevent patients from being blindsided by bills, usually for treatment received from out-of-network medical providers who work at in-network facilities. Instead, they are concerned about another part of the law — a price transparency provision — that requires most licensed medical practitioners to give patients detailed upfront cost estimates, including a diagnosis, and information about the length and costs involved in a typical course of treatment. That’s unfitting for mental health care, they say, because diagnoses can take time and sometimes change over the course of treatment.

Read the full article at KHN.

Universal Health Care Commission to Hold its First Meeting Next Week

On Tuesday, November 30, the Universal Health Care Commission (UHCC) will meet on Zoom. During their first meeting, UHCC members will receive:

  • An orientation to the legislation and commission purpose
  • Open Public Meetings training
  • A review of the draft charter and operating procedures

Meeting details

Tuesday, November 30, 2021
1-3 p.m.
Meet on Zoom (no registration required)

Live captioning may be available: Communication Access Real-time Transcription (CART) services, or live closed captioning, may be available for this event, on demand. To request this accommodation, please submit a request to rachelle.alongi@hca.wa.gov as soon as possible. We will make every effort to accommodate this request but cannot guarantee that a CART writer will be available.

What’s the UHCC?

Washington State seeks to establish a universal health care system for all residents, where people have access to affordable, high-quality health care. Senate Bill 5399 passed during the 2021 legislative session, creating a Universal Health Care Commission to aid in this effort.

View our commission roster.

Can I provide public comment or testimony?

Yes. Your input is a crucial part of the UHCC process. Every commission meeting will have a designated time for public comment. If you would like to let us know in advance you’ll be speaking, please contact us at HCA_UniversalHCC@hca.wa.gov. You can also submit comments in writing at any time.

Where can I get more information?

Sign up to receive announcements about the UHCC.

‘A lot of these people are not going to make it,’ official warns as Washington COVID hospitalizations continue rising

While recent state data is still preliminary, early reports show COVID-19 hospitalizations throughout the state are up after the Labor Day weekend, pushing hospital leaders to continue their plea for residents to mask up, get vaccinated and be wary of mass gatherings.

At a news briefing Tuesday morning, Washington State Hospital Association CEO Cassie Sauer said that after the weekend, hospital officials counted 1,674 Washingtonians hospitalized with the virus, a 7% increase from last week. “Even more shocking,” she said, 251 of those patients are on ventilators, reflecting a 34% increase from last week.

“To be clear, a lot of these people are not going to make it,” Sauer said. The patients are “almost exclusively” unvaccinated individuals, or people who are immunocompromised, she said.

Read the full article from the Seattle Times.