North Carolina: Rethinking Guardianship - Bill and Deborah

Bill Donohue and Deborah Woolard share the story of their choice to not seek guardianship for their son, Jeremy Woolard Donahue, who has Down Syndrome.

Rethinking Guardianship's mission is to promote less restrictive alternatives to guardianship and effect long-term changes in North Carolina's guardianship system. To learn more, visit:  https://rethinkingguardianshipnc.org/

Watch the video below:

North Carolina- Rethinking Guardianship - Janie and Suvya

Janie Desmond and Suvya Carroll discuss how they use supported decision-making in their lives as young adults living with intellectual/developmental disabilities.

Rethinking Guardianship's mission is to promote less restrictive alternatives to guardianship and effect long-term changes in North Carolina's guardianship system. To learn more, visit: https://rethinkingguardianshipnc.org/

Watch the video below:

The End of Medicaid Resource Recovery? Bill Ending Requirement Introduced

Rep. Jan Schakowsky (D-Ill.) has introduced The Stop Unfair Medicaid Recoveries Act, which would repeal the requirement that states establish a Medicaid estate recovery program and would limit the circumstances in which a state may place a lien on a Medicaid beneficiary’s property. 

The newly introduced bill, H.R. 6698, follows an April 2021 Issue Brief, entitled,  "Medicaid Estate Claims: Perpetuating Poverty & Inequality for a Minimal Return," in which five elder advocacy groups called on Congress to eliminate Medicaid estate recovery after the Medicaid and CHIP Payment and Access Commission concluded that the practice recoups only a tiny percentage of Medicaid spending while contributing to generational poverty and wealth inequity. The groups issuing the brief included the National Academy of Elder Law Attorneys and Justice in Aging.

Current federal law requires that state Medicaid programs attempt to recover long-term care costs from the estates of deceased recipients.  The mandate, courtesy of the 1993 Omnibus Budget Reconciliation Act (OBRA '93), OBRA  ‘93 was  passed partially in response to estate planners who lawfully helped clients move assets so that they could more quickly become eligible for Medicaid.  Rather than change the asset transfer rules under the Medicaid eligibility requirements, the federal government opted to leave the majority of the transfer rules the same and place the burden on the states to recover assets from those who have assets left after death. In other words, recipients could effectuate transfers to shield assets from Medicaid, but those that did or could not, risked asset recovery.    

At the time OBRA '93 was enacted, only twenty-two states had chosen to employ some form of estate recovery.  OBRA '93 initially divided the nation with some states rebelling against the practice.  West Virginia actually sued the Department of Health and Human Services (DHS) arguing the federal mandate was unconstitutional. A federal appellate court found that the mandate did not violate the Constitution. West Virginia responded, trying to soften the blow of estate recovery, by exempting approximately $50,000 in home value so those poor families would not lose their homes. West Virginia was blocked from enacting its preferred policy: even this targeted protection for impoverished families was found to violate the federal mandate.

Texas, Georgia, and Michigan also balked at implementing the law.  Michigan was the last hold out, finally conforming in 2007 when the federal government threatened to withhold its Medicaid funds. The result? Medicaid Resource Recovery is the law and is the norm.  Worse, the experience has encouraged States to enact even more draconian recovery efforts, such as filial responsibility, lest the federal government tap the State as a scofflaw and threaten defunding.  

 

Due to Medicaid’s strict resource requirements, the only thing of significant value that  a Medicaid recipient owns at death is their home, which is an exempt asset for determining Medicaid eligibility. Notwithstanding that a recipient's home is exempt in determining eligibility, serves to reduce the actual cost of caring for the senior by avoiding expensive institutional care, and is, in the vast majority of cases, better for the recipient's health and well being, Medicaid Resource Recovery permits the state to recover the home and the proceeds of sale to reimburse the state for benefits paid.  The loss is especially difficult for family members who help a recipient keep and maintain the home, believing that in addition to the better quality of life they are giving the recipient, they might receive reimbursement from the sale of the home.  Rep. Schakowsky characterized the resulting trauma: 

“Imagine losing a loved one and putting them to rest, only to have Medicaid come knocking on your door demanding you now pay for the long-term care your departed relative received -- an amount that has reached, in some cases, hundreds of thousands of dollars. Sadly, too many families experience this traumatic, horrific and cruel situation all the time. It is a well-kept secret with devastating and shocking consequences to families.”

Praising the new legislation, Eric Carlson, Justice in Aging’s Directing Attorney, said: “ 

By forcing the sale of family homes, Medicaid estate claims keep families in poverty and increase the risk of homelessness.  The Stop Unfair Medicaid Recoveries Act will fix this problem so that low-income persons don’t have to risk the family home in order to receive needed long-term care.”

The bill, which has a dozen co-sponsors, was referred to the House Committee on Energy and Commerce, of which Rep. Schakowsky is a member.  She is also Co-Chair of the House Democratic Task Force on Aging and Families.

Among other changes to the Social Security Act, 42 U.S.C. 1396p(a), the bill would add a new paragraph providing that “no adjustment or recovery of any medical assistance correctly paid on behalf of an individual under the State plan may be initiated, maintained, or collected on or after the date of the enactment of this paragraph. Not later than 90 days after such date, a State shall withdraw any lien in effect as of such date with respect to such medical assistance correctly paid.”

Several other organizations have voiced their support for this legislation:

“California Advocates for Nursing Home Reform is thrilled to support Representative Schakowsky's bill to eliminate Medicaid estate recovery,” says Patricia McGinnis, Executive Director of California Advocates for Nursing Home Reform. “It's about time we stopped punishing seniors and disabled individuals simply because they cannot afford private health care. Indeed, these recovery programs have turned Medicaid into an expensive loan rather than a benefit.”

“Medicaid estate recovery disproportionately affects people with disabilities and their families—particularly those struggling to afford housing, long term services and supports, and other home and community-based services,” says Bethany Lilly, Senior Director of Income Policy, The Arc of the United States. “The Arc is proud to support this legislation because it will help protect and expand the financial security of people with disabilities and their families.”

“Caring Across Generations is proud to support this legislation that will stop the attempts to recover funds for services that everyone should have access to when they need them, long-term services and support,” says Nicole Jorwic, Chief of Advocacy and Campaigns, Caring Across Generations. “Ending this policy that disproportionally impacts communities of color, people with disabilities and low-income families, will break a cycle of poverty and allow dignity for those who require these supports, and allow comfort to those Medicaid recipients at the end of their lives, knowing they can leave what they choose to their loved ones.”

“Medicaid estate claims prevent families from building generational wealth through homeownership, exacerbating existing economic inequities,” says Jennifer Lav, Senior Attorney at the National Health Law Program. “These rules are especially detrimental to families of color that have lower homeownership rates because of discriminatory lending and housing policies, and the families of people with disabilities, who need months or years of long-term services and supports. As long-time advocates, the National Health Law Program strongly supports The Stop Unfair Medicaid Recoveries Act and calls on Congress to pass it as a means of addressing systemic inequities in both health care and housing.”

The Stop Unfair Medicaid Recoveries Act is endorsed by Justice in Aging, California Advocates for Nursing Home Reform, The Western Center on Law and Poverty, The Arc of the United States, Caring Across Generations, The National Domestic Workers Alliance, Families USA, and Easterseals.

The bill’s authors are looking for families who have experienced Medicaid estate recovery to share their stories to educate members of Congress and seek their support for this legislation. If you know of any families who would be willing to share their story, please contact: info@justiceinaging.org.

White House Announces Measures to Improve Nursing Home Care Quality

The Biden administration on February 28th announced a round of new measures for nursing homes aimed at ensuring adequate care for seniors. 

Citing how the pandemic "highlighted the tragic impact of substandard conditions at nursing homes," the White House announced it would be issuing new requirements through the Department of Health and Human Services (HHS) to improve the "quality and safety" of nursing homes.  Through the Centers for Medicare and Medicaid Services (CMS), the administration will be proposing new minimum standards of care to be unveiled within the next year following a study to determine the level of care and staffing needed.  That means, practically, that it is intended that the new minimum standards would be in place before January 1st, 2024.

While the Administration's highlighting quality of care issues in nursing homes is welcome and commendable, it is hard to see the move as anything but a political device giving President Biden subject matter for his upcoming and first State of the Union address.  President Biden is "set to talk further on these proposed plans," among other topics, on Tuesday evening during the address.

The American Health Care Association/National Center for Assisted Living (AHCA/NCAL) and LeadingAge, while grateful the Biden administration seems to be prioritizing long-term care, questioned how these policies would be implemented and enforced without adequate funding and investments.

Mark Parkinson, president and CEO of The American Health Care Association and National Center for Assisted Living (AHCA/NCAL), said in a statement to Skilled Nursing News that additional oversight without necessary assistance will not improve resident care.  In a longer written statement, he wrote: 

“Those who continue to criticize the nursing home sector are the same people who refuse to prioritize our residents and staff for resources that will help save and improve lives. Additional oversight without corresponding assistance will not improve resident care. To make real improvements, we need policymakers to prioritize investing in this chronically underfunded health care sector and support providers’ improvement on the metrics that matter for residents.  

“Long term care was already dealing with a workforce shortage prior to COVID, and the pandemic exacerbated the crisis. We would love to hire more nurses and nurse aides to support the increasing needs of our residents. However, we cannot meet additional staffing requirements when we can’t find people to fill the open positions nor when we don’t have the resources to compete against other employers.  

“It’s time to stop blaming nursing homes for a once-in-a-century pandemic that uniquely targeted our residents and vilifying the heroic caregivers who did everything they could to protect the residents they have come to know as family. Together, we should focus on meaningful solutions that can attract and retain the frontline heroes we need and strengthen delivering the quality of care and services that our nation’s seniors deserve. Providers are dedicated to learning from this pandemic, renewing our commitment to our seniors, and offering solutions that will improve the quality of care in our nation’s nursing homes. With the proper resources and support, we can transform our nation’s nursing homes.”

On February 22nd,  Mr. Parkinson sent a letter on behalf of AHCA/NCAL to Congressional leadership thanking them for their continued support of long term care residents and staff but urging them to take additional steps to ensure the safety and protection of America’s most vulnerable.  In the letter,  he outlined the association’s specific requests of Congress that would provide nursing homes and assisted living communities with the resources necessary to combat COVID-19 and address critical challenges brought on by the ongoing pandemic. Specifically, in the upcoming appropriations bills, AHCA/NCAL is calling for replenishment of the Provider Relief Fund with $20 billion allocated to long-term care, as well as an extension to the current delay of Medicare sequestration cuts and the recoupment of Medicare Accelerated and Advance payments. 

He wrote that

“[n]ursing homes and assisted living communities are facing the worst job losses among all health care professions, and the shortage is impacting seniors’ access to care. More than half of nursing homes were limiting new admissions in recent months—at a time when overwhelmed hospitals needed our assistance to free up precious beds due to the Omicron surge.

 .           .          . 

Long term care residents and staff have been among the hardest hit by the pandemic, as the virus uniquely targeted older adults with chronic conditions and exposed long-standing issues within the industry. Chronic government underfunding coupled with workforce recruitment challenges were exacerbated by the global crisis. The number of long term care facilities forced to limit admissions or close altogether because of staffing shortages and financial concerns continues to grow." 

Katie Smith Sloan, LeadingAge president and CEO, called on officials to keep in mind Medicaid’s insufficiencies when it comes to covering the cost of service:

“We know that transparency, quality improvement, and workforce investments are critical to building better nursing homes for America’s older adults and families,” Smith Sloan said in the statement. “Yet Medicaid, the dominant payer of long-term care services, doesn’t fully cover nursing homes’ cost of quality care. Regulations and enforcement, even with the best intentions, just can’t change that math.” 

On the other hand, the Long Term Care Community Coalition (LTCCC) likened the proposed changes to “the biggest and most positive news for nursing home residents in the 35 years since Ronald Reagan signed the Nursing Home Reform Act.”

CMA Senior Policy Attorney Toby S. Edelman said the federal government’s agenda tackles issues that have “plagued” the nursing home industry for decades.

“For years, we have watched as an increasingly sophisticated and corporatized industry has, too often, cut back on staffing and essential services to maximize profits,” Richard Mollot, executive director of the Long Term Care Community Coalition (LTCCC) said in a statement. “We are profoundly grateful to the [p]resident for taking this bold stand for vulnerable residents, their families, and American taxpayers, who foot the bill for most nursing home care.”

Mollott’s comments about a “corporatized industry” echo the White House’s criticism of private equity ownership of nursing homes and practices that make it difficult for consumers and watchdogs to track corporate ownership of facilities. The Biden administration is seeking to address these issues with provisions related to greater transparency, heightened penalties and standards related to “corporate competency.”

President Biden's remarks in the SOTU address:

 And as Wall Street firms take over more nursing homes, quality in those homes has gone down and costs have gone up.  

That ends on my watch. 

Medicare is going to set higher standards for nursing homes and make sure your loved ones get the care they deserve and expect. 

We’ll also cut costs and keep the economy going strong by giving workers a fair shot, provide more training and apprenticeships, hire them based on their skills not degrees. 

 

Rethinking Guardianship- Carol Kelly

Carol Kelly shares the story of her mother, Mary Jane Mann, who was the victim of an inappropriate, predatory guardianship (conservatorship) in California. The video below features scenes from "A Hijacked Life," courtesy of KOVR CBS13 Sacramento.

Rethinking Guardianship's mission is to promote less restrictive alternatives to guardianship and effect long-term changes in North Carolina's guardianship system. To learn more, visit:

https://rethinkingguardianshipnc.org/

Watch the video below: