February 9, 2024

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

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One of our long-standing VOR members recently sent a video made in 1999, showing the need for intermediate care facilities in a full continuum of care. Many of the people in this video are no longer with us. Many of their loved ones are no longer with us, either. Indeed, the facility at which this was filmed, the North Virginia Training Center, is no longer with us. It was closed by the State of Virginia in 2017 as a result of an action by the Department of Justice.

A new title and disclaimer have been added to the video, explaining that we no longer use the "R" word in reference to people with I/DD, nor do we use it in VOR's name. But aside from all of that, the truth that these families share with us remains the same.

Click here to view this VOR Time Capsule

Save The Dates!

May 6 - 9, 2024

Back to Capitol Hill!

May 6 - 9, we are assembling our members in Washington, D.C. to speak with congressional staffers, members of Congress, committee staff, federal agencies, and other stakeholders in the I/DD and autism communities.

We are still working on the details for where to stay, who to meet with, what to present / ask, etc.


Please reach out to us at [email protected]

and let us know if you might be interested in attending

(no obligation)

We will be contracting with a hotel for rooms this week, and need to make sure to commit to a good number of rooms, trying to accommodate many of those who would like to attend without over-extending ourselves by committing to too many rooms.

Please reach out to us at [email protected]

VOR Has Submitted Comments to the Department of Justice' Notice of Proposed Rule Making (NPRM)

DOJ recently asked for comments in a Notice of Proposed Rule Making requiring medical facilities to provide Medical Diagnostic Equipment designed to meet the requirements of people with disabilities, under the ADA.

While VOR recognizes the cost burden on providers, for decades these costs have been placed on the disability community via care denied, delayed or compromised. This has impacted these individuals’ health outcomes, ability to work, and overall quality of life. Further, it has negatively affected the caregivers for these patients as well.

Please click here for more information about this vital issue.

National News:

House Passes QALY Ban Bill

By Peter Wehrwein, Managed Healthcare Executive, February 7, 2024

In a party line vote, the House Republicans passed legislation today that would prohibit federal agencies, Medicare Advantage plans, and Medicaid managed care organizations from using quality-adjusted life years (QALYs) and “similar measures” in coverage and payment determinations.

Cost-effectiveness groups such as the Institute for Clinical and Economic Review (ICER) and many academics use QALYs as a starting point, often with adjustments and additional factors, folded in, for assessing drugs and other medical interventions and their prices. Some disability rights advocates and others group have been strongly critical of QALYs because, they argue, QALYs undervalue and are discriminatory against people with disability and illness in the way they grade an intervention’s effect on health and functioning.

The QALY debate — sometimes polite and academic, other times combative and strident — has been going on for years, but the 211- 208 vote today in favor of Protecting Health Care for All Patients Act of 2023 (H.R. 485) may raise the stakes. Some experts are especially concerned about the “similar measures” language in the legislation stifling — or, at the very least, having a chilling effect — on all comparative effectiveness efforts.

Republicans favoring the bill spoke strongly. “QALY metrics intentionally devalue treatment for disabled and chronically ill patients in determining whether a treatment is cost effective. In other words, telling the patient, ‘you’re not worth it.’” Rep. Brad Wenstrup, one of the Republican co-sponsors of the bill, said today on the floor of the House before the vote. Wenstrup, a podiatrist, represents a district in in southern Ohio. Another sponsor, Rep. Buddy Carter, said the legislation will “expand access to life-saving treatments and prevent discrimination against American with disabilities.”


Related Story:

House Approves Ban on Disputed Measure for Valuing Treatments

By Victoria Knight, Axios, February 8, 2024

A divided House of Representatives on Wednesday endorsed banning quality-adjusted life years from being used as a metric for determining a drug's value in federal health programs.

Why it matters: QALYs are viewed as a key tool in comparative effectiveness studies, but have been held up as discriminatory against people with disabilities — and are unevenly applied across federal programs.

  • They are used to calculate how many years a drug could help prolong a person's life — but factor how a patient feels during those extra years to determine if a medicine is worth the price.
  • That's raised sensitive bioethics questions, such as whether it's worth less to treat a person with a serious developmental disability.

The Biden administration this week came out against the ban, characterizing it as a backdoor attempt to weaken public health efforts, while noting there already are prohibitions against using QALYs in Medicare as part of the Affordable Care Act and the Inflation Reduction Act.

  • Rep. Frank Pallone, the top Democrat on the House Energy and Commerce Committee, argued on Wednesday that the ban would undermine federal efforts to lower prescription drug costs and give drug companies an opening to legally challenge efforts to reduce costs.
  • Such opposition could doom the ban's prospects of being taken up in the Senate.

Driving the news: The measure passed in a party-line vote of 211–208 and marked a victory for Energy and Commerce Chair Cathy McMorris Rodgers (R-Wash.), who's made it a priority.

  • Disability groups and figures including ex-Democratic Rep. Tony Coelho, a primary sponsor of the Americans with Disabilities Act, argued QALYs lowball the value of treating patients with heart disease, ALS, or sickle cell disease and lead insurers to give them less priority for coverage.


Private Equity’s Growing Footprint In Home Health Care Draws Scrutiny

By Anna Claire Vollers, Stateline. via Disability Scoop, February 8, 2024

Help at Home employed nearly 800 caregivers scattered across every county in Alabama, helping 1,100 older clients those with disabilities with activities such as bathing, housework and meal preparation.

And then suddenly, it was gone.

Alabama’s largest provider of home care services said it abruptly left the state last fall because the state’s “reimbursement and regulatory environment” made it difficult to recruit and retain enough workers, according to Kristen Trenaman, the company’s vice president of public relations. Its departure sent state agencies scrambling to find new caregivers for the people who relied on it.

Proponents of private equity investment in health care say the infusion of capital helps smaller companies expand into new markets, streamline their costs and pay for new technology.

But critics point to Help at Home’s departure from Alabama as a cautionary tale for what can happen when states that spend little on health care rely on private equity-owned providers to care for their most vulnerable residents.

Private equity-owned health care companies are focused on generating robust profits for investors. Typically, they want to cut costs, increase cash flow, use debt to fund expansion and then sell within a few years for maximum profit. In health care, critics say, that business model can diminish the quality of care, increase costs and narrow access for patients — particularly in more lightly regulated industries such as home care and hospice care.

“We leave a lot to the whims of the market and allow private players to dictate access to and quality of health care, and the case of Help at Home is a great example of that,” said Mary Bugbee, senior research and campaign coordinator for health care at the Private Equity Stakeholder Project, a research and advocacy group.

“At the end of the day it’s about money, and if we don’t have guardrails in our policies to prevent these pullouts, they’re going to keep happening.”

Read the full article here

Breaking News:

Representatives Paul Tonko (D-NY) and Brian Fitzpatrick (R-PA) Introduce Bill to Increase FMAP for Individuals with I/DD and Autism Receiving Services in ICFs as well as HCBS

H.R. 7267 - The Disability Community Act of 2023 - To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental disabilities. 

Click here to read the press release from Rep. Tonko

Following up on recent news:

Facing Backlash, Census Scraps Overhaul Of Disability Questions

By Michelle Diament, Disability Scoop, February 7, 2024

The U.S. Census Bureau says it will hold off on changes to the way it determines the number of Americans with disabilities that advocates warned could lead to a severe undercount.

Census Bureau Director Robert L. Santos said this week that his agency will not make any modifications to the disability questions in its American Community Survey for 2025.

The decision comes after the Census Bureau proposed significant updates to the survey in October. As part of the plan, the agency sought to reorder and reword its series of six disability questions and add a new question asking about psychosocial and cognitive disability as well as problems with speech.

In addition, instead of asking people to respond with “yes” or “no,” the proposal called for people to rate the level of difficulty they have with various functions. Individuals would have to respond to at least one question with “a lot of difficulty” or “cannot do at all” in order to be considered as having a disability.

Disability advocates rallied against the changes, which they said caught them by surprise, warning that the revisions could lead to a 40% drop in the count for this population. Since Census Bureau data is used to establish federal funding allocations and decisions on programs ranging from affordable housing to health care, civil rights and more, the consequences could be severe, they said.

More than 12,000 comments were submitted in response to the Census Bureau proposal, the majority of which “expressed concerns with the proposed changes to the disability questions,” Santos wrote in a blog post this week.


Note: The Census Bureau intends to follow up on this matter, and plans to convene a meeting with federal stakeholders, Disability Community Representatives and advocates. The Bureau will provide more details in the coming weeks. Read their announcement here.

State News:

Oklahoma Sends a Growing Number of Kids with Complex Needs Out Of State for Treatment

By Kayla Branch, The Frontier, February 5, 2024    

The state lacks options for kids with developmental disabilities and mental health needs. Oklahoma spent more than $5 million to send 49 kids out of state for treatment in the past year.  

Amber Boyer spent early mornings last spring crawling out of her bedroom window and into her garage to make breakfast and gather medications for her then 14-year-old son Davin. 

She’d strap on a rugby-style helmet to protect her head and hair when she went back inside her Kay County home to give Davin his meals. Davin has autism and a speech delay. For the last year, he’s had increasingly aggressive behaviors, Boyer said. 

Davin started complaining about headaches in 2022. He’d need to be sedated for any medical testing to figure out why the headaches were happening. But few doctors in the state do sedation before a procedure like an MRI, Boyer said. Finding care was nearly impossible. 

Davin’s behaviors grew increasingly aggressive as his headaches continued. He was biting, pulling hair and breaking doors. By early 2023, Davin was suspended for several days from his public school. He eventually refused to attend school in person. Boyer took off almost four weeks from work to stay home with him as she looked for treatment. When Davin became a serious risk to himself or others, she took him to the emergency room. He visited hospital emergency rooms seven times in six months.  

As Davin’s behaviors escalated, Boyer moved her teenage daughter to her parents’ home, and she moved into the garage, eventually taking medical leave from work. She spent her days making calls to mental health providers, doctors, her attorney, the local school district and the Oklahoma Autism Network, trying to find someone who could help. 

Boyer could only stay inside her house at night while they both slept — her behind a steel-plated door. From the garage, she watched Davin through cameras inside the house to make sure he was safe. 

Davin has been on Oklahoma’s waiting list for developmental disability services for around a decade. Boyer has relied on private insurance and Oklahoma’s Medicaid program to help pay for his care in the meantime.

Struggling to find care is common for parents with children who have dual needs, or an intellectual or developmental disability and a mental or behavioral health challenge. 

Demand for mental and behavioral health care has spiked in recent years amid a staffing shortage, leaving some kids with complex needs behind as providers pick and choose which clients they can take on. The state has ramped up some spending on mental health care and developmental disability services but the investments haven’t been enough to allow providers to expand or feel ready to accept more youth with dual needs, officials say. 

Without better access to care, advocates say children with dual needs are more likely to end up involved with the child welfare or criminal justice system, or be sent to costly out-of-state facilities away from their families. In the 2023 fiscal year, Oklahoma spent over $5 million to send 49 kids out of state for treatment, according to data from the Oklahoma Health Care Authority. Five years ago, the state only paid for two kids to leave for treatment. Some children are likely left out of those numbers.


Washington - Many Can Get Paid while Caring for a Child with a Disability in WA, Except Their Parents. A Pair of Bills Hopes to Change This

By Lauren Rendahl, The Spokesman-Review, February 5, 2024

Lindsey Topping-Schuetz remembers wiping tears from her eyes as she wheeled her son Owen through the hallway of Tacoma General Hospital, listening to claps and cheers from staff and family members after he spent 103 days in the intensive care unit for newborns. She remembers thanking the people who taught her how to keep Owen alive.

When Owen came home seven years ago, he required oxygen, a feeding tube and had handfuls of episodes that left him struggling to breathe while Topping-Schuetz rushed to blast oxygen in his face. The team that included 40 doctors who cared for Owen dwindled to a team of two: Topping-Schuetz and her husband.

“Now, doctors ask me how they can help,” she said. “I would become the expert.”

More than a dozen parents of children who have disabilities testified in front of the Senate Human Services Committee last week, pleading with lawmakers to pass a bill that would allow parental caregivers of children with developmental disabilities to receive payment.

Sen. Emily Randall, D-Bremerton, drew from personal experience as she proposed her bill to the committee. When Randall turned 18, she assumed the role of a paid caregiver for her younger sister, Olivia. However, since Oliva was underage, her mother, who had cared for Olivia throughout her life, was still not eligible for payment.

A companion House bill vying for similar changes has passed out of the Human Services, Youth and Early Learning Committee and has been referred to the Appropriations Committee.

Right now, state policy grants parents of an individual over the age of 18 to receive payment as their caregiver. However, parents of minor children cannot be paid for providing the same care.

Not only are parents of children with disabilities ineligible for pay, but finding an outside caregiver or one provided through Medicaid is hard and highly unlikely due to the labor shortage.


Indiana - Parents who care for Children with Special Needs Protest Impending FSSA Cuts at Statehouse

By Emily Longnecker, WTHR-TV News, February 5, 2024

Parents of kids with special needs were at the Statehouse Monday as part of an ongoing protest to proposed cuts by the Family and Social Services Administration, cuts the families said would impact the care they give their children.

The cuts are part of FSSA's plan to make up some of an almost $1 billion shortfall to its Medicaid budget, a shortfall they announced in December. 

The agency says it plans to make up $300 million of that by cutting a program that pays parents of special needs kids to take care of them at home.

"Somebody needs to stand up for those who don't have a voice. Most of these kids are non-verbal," said Renee Case, whose 6-year-old daughter Ivy was born with a rare genetic disorder.

Case's 6-year-old daughter, Ivy, was born with a rare genetic disorder.

"She cannot sit, stand, walk, do anything on her own. She cannot dress herself. She cannot feed herself. Her vision is not the greatest either. She's nonverbal. She can't communicate. She requires 24-7 care," Case said.

Since 2022, Case and many of the parents who came to the Statehouse Monday, have been part of the state's Attendant Care Program. It allows parents of kids with special needs, like Ashley Cleven, to be paid hourly for the care they give their child at home.

"It's been a blessing to be able to provide for our family by being able to be home with him," said Cleven of her 5-year-old son, Ryker, who was born with cerebral palsy.

Now, FSSA is proposing to end the payments to parents, like Cleven, who care for their medically complex children, to make up for a Medicaid budget shortfall. The plan eliminates parents as an option to be paid caregivers for their medically complex children.

The cuts would take effect by July 1.

Other medical professionals, like nurses, would qualify as an attendant caregiver, but families know there is a shortage of those caregivers available to help.

"Something that's already a struggle for him in his life doesn't need to include whether or not his mother can be his caregiver or not, a paid caregiver or not," said Cleven of Ryker's situation.

"They are hoping we won't be able to find somebody to take over our spot, so they don't have to pay for it," Case said.


Kansas is Poised to Expand Tax Credit for Helping Disabled Workers after Debate over Low Pay

By John Hanna, AP via ABC News, February 2, 2024

Kansas is poised to expand an income tax credit for goods and services purchased from companies and nonprofits employing disabled workers, a year after a debate over how much the state should buck a national trend against paying those workers below the minimum wage.

A bill approved by the Legislature this week with broad bipartisan support would increase the total tax credits available from $5 million a year to $8 million. It also would create a new, $1 million program for nonprofit groups running vocational programs known as sheltered workshops to help them start paying workers at least the federal minimum wage of $7.25 an hour.

The tax credit had previously only covered purchases from employers paying at least the minimum wage, and lawmakers reviewed it last year because it was set to expire at the start of this year.

It's the Legislature's latest attempt to expand the tax credit.

Their first proposal would have allowed nonprofit groups with sheltered workshops to form separate divisions paying at least the minimum wage so that people or businesses buying from those divisions could claim the tax credit. Backers saw it as an opportunity to expand the reach of the tax credit and therefore employment opportunities for disabled workers.

But it drew strong opposition from disabled rights groups arguing that it would encourage wages below the minimum wage — a vestige of decades-old views of disabled people as incapable of doing jobs outside such programs.

The compromise last year was to start the grant program instead. However, the Republican-controlled Legislature folded it into an omnibus tax-cut bill with provisions opposed by Democratic Gov. Laura Kelly, and she vetoed it.

The tax credit then expired at the start of this year, but this year's bill is written so that people can still claim the tax credit when they file their 2023 returns.

“It's a good compromise,” said Neil Romano, a member of the National Council on Disability, and former head of the U.S. Department of Labor's Office of Disability Employment Policy. “It moves us towards where we want to be.”


Kansas - Medicaid Expansion Continues to be Tied to Disability Waitlist in Legislative Debate

By Rachel Mipro, Kansas Reflector, February 7, 2024

Gov. Laura Kelly announced her plan to allocate additional funding for the state’s Medicaid-funded waiver program, a move that would slightly shrink a waitlist of thousands of the state’s most vulnerable residents in need of healthcare. 

The proposal would still require approval from the Legislature, where Kelly, a Democrat, is embroiled in a broader fight with leaders of both Republican-run chambers who oppose Medicaid expansion.

“As we’ve heard from disability advocates and families, Kansans with disabilities need the essential services and care provided by these waivers to live comfortably,” Kelly said in a Tuesday statement. “While we work to build a more comprehensive network of disability services providers, I am committed to reducing the wait times for waiver services.”

The wait list for intellectual and developmental disability services is at 5,187 people, according to December data, and the physical disability list has 2,361 waiting Kansans. 

Kelly’s fiscal year 2025 budget amendment of over $23 million for the waivers will create 250 new slots in both programs, taking a total of 500 Kansans off the lists. 

Kansans with intellectual or developmental disabilities are eligible for Medicaid-funded support waivers that cover a variety of needed services, such as in-home care. But wait times can last more than 10 years, and more and more Kansans have been added to the slow-moving lists.

The waitlists have been a problem for more than 20 years, as wait times are tied to the amount of funding lawmakers have invested in the program. The wait lists have grown by thousands of people in the past eight years, but funding hasn’t kept up, according to Rocky Nichols, executive director of the Disability Rights Center of Kansas.

Nichols estimated the Legislature has only increased state funding once in those eight years, allocating $3 million in 2020 to take 150 people off the list. 


VOR Bill Watch:

[Please click on blue link to view information about the bill]


H.R.7267 - Disability Community Act of 2023 To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental disabilities.

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.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023

Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.


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.

S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.

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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Direct Support Professionals!



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In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

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