July 28 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


It's Deja Vu All Over Again

This week, we are seeing the recurrence of some familiar themes, follow up to stories posted last week,

and several lines that run parallel to issues VOR members have faced, with actions from HHS affecting the aging community in nursing facilities, and DOJ actions on a Disability Rights complaint concerning people with severe mental illness in congregate care. Meanwhile, the Education Department is concerned about the lack of compliance for young people with I/DD and autism in the school system, but not so much when they age out of the system at 22.

DOJ Action Against Congregate Care for People with Severe Mental Illness in South Carolina:

‘Like a Little Asylum’: Federal Lawsuit Looms Over SC Warehousing Mentally Ill

By Alexander Thompson and Tom Corwin, The Post and Courier, July 25, 2023

Advocates for South Carolinians with severe mental illness say a lawsuit from the U.S. Department of Justice could prompt needed change to the state’s health care system after an investigation found likely violations of federal law.

The scathing report contends the state is warehousing many people with mental illness in residential facilities, often in poverty and in poor conditions, when those patients could live independently in their communities with the proper services.

“I’m hoping this will wake them up,” Kimberly Tissot, president of the advocacy group Able South Carolina, told The Post and Courier on July 25. “The disability community has been raising these flags for years.”

Her comments came on the eve of the 33rd anniversary of the Americans with Disabilities Act, signed into law by then-President H.W. Bush on July 26, 1990. 

Since the U.S. Supreme Court’s 1999 Olmstead v. L.C. ruling that the law requires states to enable the severely mentally ill to live in the least restrictive settings possible, the DOJ has sued roughly 20 states over lack of compliance. Often, states sign settlements agreeing to work toward moving patients out of institutions while the DOJ or a court monitors progress. 

About 2,000 South Carolinians live in approximately 250 homes that the state officially calls community residential care facilities, most of which are privately operated, according to the report. But residents have little control over their lives there and “rarely engage with the broader community,” the report found.

Dozens of those residents told investigators they want to leave the group homes, but most don’t offer an easy pathway out. Even if residents have a way to return to their communities, the state lacks the support services and subsidized housing to make it possible, according to the report.

The S.C. Department of Health and Human Services has scheduled a meeting with the DOJ and looks forward to bringing “resolution to the concerns,” spokesman Jeff Leieritz said in a statement.

The Department of Mental Health has moved about 400 people out of group homes back to their communities and added 170 units of affordable community housing under a transitions program started in 2019, according to spokeswoman Tracy LaPointe.

Community services suffered from staffing shortages caused by the pandemic and the tight labor market that followed, LaPointe said. The department hopes recently approved raises for state employees will help remedy the problems.

The state budget that started July 1 provided the Department of Mental Health nearly $4 million to boost salaries of mental health professionals and almost $5 million for nurses’ pay. 

The report credited the state for its cooperation and candor during the investigation.

There are concerns about potential federal intervention.

In its zeal to eliminate group homes, the DOJ efforts can occasionally result in residents being sent back to communities before sufficient services are set up to support them, which can jeopardize people’s health and safety, said Hugo Dwyer, the executive director of A Voice of Reason, a national advocacy group for people with mental and intellectual disabilities.

In the past, Dwyer’s group has fought DOJ on closing congregate care facilities too soon.

The DOJ can also be exacting. “In most cases, it’s impossible to meet their standards,” Dwyer said, and the lawsuits with states drag on for years.

South Carolina advocates say it will take a major investment in funding and staffing to provide adequate community-based care, which involves teams of specialists who assist those with severe mental illness with everything from medication management to life skills while they live independently. 

“There’s no existing infrastructure,” Tissot said, recognizing it will take big commitments from lawmakers over a yearslong process. “We can’t just get everyone out of these facilities right now.”

Read the full article here

Following Up on Last Week's News:

Last Week's Article:

In Stinging Rebuke, Judge Orders Florida to Stop Funneling Frail Kids into Nursing Homes

Read Last Week's Story Here

This Week's Follow Up:

In Blistering Order, Judge Tells Florida to Stop Blocking Effort to Aid Medically Frail Kids

By Carol Marbin Miller, Miami Herald, July 26, 2023

The battle of wills between Florida health administrators and a federal court judge intensified Tuesday as U.S. District Judge Donald M. Middlebrooks accused the state of obstructing his efforts to free medically fragile children from segregated institutions, where many have spent their entire lives.

Late last week, the Florida Agency for Health Care Administration asked Middlebrooks to stay an injunction he signed a week earlier requiring the state to reform its system of care for 2,750 children with medical complexities. The linchpin of Middlebrooks’ plan is a requirement that the state ensure such children receive at least 90% of the at-home nursing care prescribed by their doctors.

The injunction capped a two-week trial in May — and a 12-year litigation Middlebrooks repeatedly has castigated as shameful — over claims by the U.S. Justice Department that Florida is violating the Americans with Disabilities Act by steering severely disabled children into nursing homes. Virtually all of the youngsters, Middlebrooks wrote, could be safely cared for at home with sufficient help from the state.

The litigation, filed by the DOJ’s civil rights division, primarily concerns the plight of 140 children who are so frail that most require feeding and breathing tubes to sustain them. Another 1,800 youngsters, the DOJ said, are at risk of being institutionalized.

What binds the children together is their reliance on round-the-clock nursing care, plus the medical equipment that keeps them alive. Federal civil rights laws require that people with disabilities be allowed to live and receive care in the least-restrictive settings, such as family homes. But Florida health regulators instead have left families with little choice but to leave their children in institutions by making it extremely difficult for parents to access adequate private-duty nursing, Middlebrooks wrote.

A total of 2,750 children in Florida require constant nursing care, Middlebrooks wrote, and parents have complained bitterly for years that low reimbursement rates under Medicaid, the state’s insurer of last resort for impoverished and disabled Floridians, have made in-home care difficult to access. The judge said he would appoint a court monitor to oversee the state’s compliance with his orders.

Lawyers for the state argued last week that Middlebrooks’ actions amounted to a “takeover” of the state’s healthcare administration by the federal government.

AHCA lawyers said it would be “impossible” for the state to comply with Middlebrooks’ injunction. And doing so, the state said, would force health administrators to redirect scarce health dollars from other deserving groups.

“Beyond the shadow of a doubt, the state will violate the injunction through no fault of its own, and despite its best efforts, because the provision of 90% of [private-duty nursing] hours to 2,750 children in the midst of a nursing shortage is simply impossible.” the state argued.

Continued here

Last Week's Story:

Nearly 3 Million People Cut from Medicaid Coverage, Even Though Many Might Still Be Eligible

By Spencer Kimball, CNBC, Updated on July 20, 2023

Read last week's story here

This Week's Story:

Nearly 4 Million in U.S. Cut from Medicaid, Most for Paperwork Reasons

Analysis by Amy Goldstein with research by McKenzie Beard, The Washington Post, July 28, 2023

[N]early 4 million Americans have been lopped off Medicaid since the end of a pandemic-era promise that people with the safety-net health coverage could keep it, requiring every state to begin a herculean undertaking of sorting out who still belonged on the rolls.

The 3.8 million is an undercount, reflecting only people who have lost coverage so far in 37 states that have voluntarily made public their data from this sorting process, known as the Medicaid unwinding.

Read this week's article here

Education, and Then The Cliff:

Ed Department Tells States To Step Up IDEA Compliance

By Michelle Diament, Disability Scoop, July 25, 2023

Citing a pattern of failures, federal education officials are issuing new guidance pressuring states to improve their oversight of special education programs.

The 45-page document released this week by the U.S. Department of Education outlines steps that states should take to enhance their monitoring of IDEA and ensure compliance in school districts and early intervention programs.

Specifically, it indicates that states should monitor every school district and early intervention program at least once every six years and states “may not ignore credible allegations about potential noncompliance” even if they come outside of the regular visit cycle. In cases where a program is not compliant, states must issue such a finding in a timely manner, generally within three months, and they must ensure that the issue is corrected for each individual child, the guidance states.

“While the federal government provides grants to states under IDEA, it is the state’s responsibility to educate students with disabilities in accordance with the law. This guidance underscores each state’s general supervision responsibility to meet the purpose of IDEA and ensure that all school-age children, regardless of the nature or severity of their disability, can access (a free appropriate public education) in the least restrictive environment and that infants and toddlers with disabilities and their families receive appropriate early intervention services to the maximum extent appropriate,” said Valerie C. Williams, director of the Education Department’s Office of Special Education Programs.


Lack of Resources Creates Problems for Parents of Children with Disabilities

By Matt Pearl, WFTS Action News - The Two Americas, July 23, 2023

Ishan Nayak's life is about to change.

“In October, he’ll be done with high school," his mother, Sitara, said. "So that’s the huge change, and now it’s, ‘OK, after school, it's the rest of his life.'"

Ishan, 21, has developmental disabilities. When he turns 22, he will no longer be able to attend school during the year.

It puts a burden on his parents who have been searching for day programs near their Atlanta suburb.

“The only place that I could find is about 25, 30 miles from our house," Sitara said. "So, it’s a good 40-minute one-way drive. That’s basically two hours of driving every day, just dropping off and picking up. We count ourselves lucky that we even found a place for him because that's not the reality for most families.”

What the Nayaks face now is what many across the country have known for years: services and programs for adults with disabilities don’t come close to covering those in need.

“Our heart breaks for families because we provide services," said Diane Wilush, who runs United Cerebral Palsy of Georgia and South Carolina. "That's our mission. That's our objective. That's what we exist to do. But because of the lack of personnel due to the funding, we often will tell people, ‘Check back with us. We just can't support you now.’”

Individuals with intellectual and developmental disabilities often rely on waivers from Medicaid to receive government-funded services. But the waiting lists for those services hold nearly 500,000 people.

This year, the Georgia state budget included a pay raise for direct care workers from more than $10/hour to more than $16/hour. Georgia’s governor, Brian Kemp, removed that raise, saying it would take away funding from other services.

“This issue of personnel is directly related to funding," said Wilush. "This issue of a waiting list is inextricably related to funding. We’ve got to get that right. And if we don’t, we may as well just accept that this is the way things are.”


The Aging Population and Nursing Homes:

AHCA Warns White House about ‘One-Size-Fits All’ Staffing Mandate, Offers 4-point Plan of Its Own

By Jessica R. Towhey, McKnight's Long-Term Care News, July 25, 2023             

The nation’s largest nursing home association stung the administration with its own words Monday when it sent the White House another letter arguing against a planned federal nursing home staffing mandate.

Such a proposal would be in direct opposition to what the same regulators said seven years ago when they warned that a “one-size-fits-all” rule would not result in better care, the American Health Care Association wrote.

The provider group also offered four recommendations the federal government could implement instead of a national staffing rule that could result in drastic, “unintended consequences.” The recommendations are well-known to close observers as proposals AHCA has also made previously in its reform plans.

The association noted that the Centers for Medicaid & Medicare Services warned in 2016 that a “‘one-size-fits-all’ staffing minimum would not improve quality of care in nursing homes.” It is AHCA’s second letter to the White House in 13 days on this topic.

CMS officials wrote in a Federal Register entry on Oct. 4, 2016, the following about participation in federal programs for long-term care facilities: “We continue to be concerned that a mandated ratio could result in unintended consequences, such as staffing to the minimum, input substitution (hiring for one position by eliminating another), and task diversion (assigning non-standard tasks to a position), as well as stifling innovation, and would not result in the improved quality and person-centered care that we seek in facilities.

“[W]e do not agree that we should establish minimum staffing ratios at this time. As discussed in the preamble to the proposed rule, this is a complex issue and we do not agree that a ‘one size fits all’ approach is best.”

AHCA, fellow provider group LeadingAge and their state affiliates have been vociferous in their opposition to a staffing mandate the sector observers could require nursing homes to provide 4.1 hours of direct care per resident per day. The associations and other advocates point to the national staffing crisis that will make it near-impossible for facilities to be in compliance with such a rule. 

Instead, AHCA suggested in its letter that the federal government “refocus” on other ways to improve the quality of care in nursing homes, namely: 1) publicly reporting resident and patient satisfaction; 2) building up the workforce; 3) improving the Special Focus Facility Program; and 4) enhancing CMS’s Value-Based Purchasing Program. 

“We understand that the original intent of proposing additional federal staffing requirements is to enhance care — nursing home providers share in this noble cause,” association President and CEO Mark Parkinson wrote in the letter. “In reality, staffing mandates will only limit access to care for our nation’s seniors, as nursing homes will be forced to restrict the number of residents they can serve, or close altogether. 


Costs Rise, Quality Falls after Nursing Home Acquisitions: Review   

By Kimberley Marselas, McKnight's Long-Term Care News, July 21, 2023

As acquisitions in US seniors housing and senior care continue at record levels, a new paper in an international medical journal finds such transactions typically bring about a rise in costs and a drop off in quality.

Public health and epidemiology researchers from five universities in three countries reviewed dozens of studies on private equity ownership and found that an escalation in private equity takeovers across healthcare settings has led to higher costs for patients and payers. Several studies also found more ensuing harmful health outcome impacts than beneficial ones, they reported in BMJ on Wednesday.

Of the 55 international studies reviewed, the most in any one setting occurred in nursing homes, where researchers noted an association between PE ownership and a decrease in nurse staffing or a shift to lower nursing skill mix, which they said “could be pursued as a means of keeping operating costs low.”

Among 27 studies that measured quality of care, a dozen reported worse quality scores associated with private equity ownership, nine showed mixed results, and three reported neutral results after acquisition.

“No consistently beneficial impacts of PE ownership were identified,” wrote the authors, led by Joseph Dov Bruch, an assistant professor at the University of Chicago.


A Brief Look to the Future?:

I/DD Care Provider Uses Telehealth to Save $100K in ER Costs Over 2 Years

Analysis by Eric Wicklund, HealthLeaders Media, July 25, 2023

Mainstay Life Services, which offers support for people with intellectual and/or developmental disabilities in Pennsylvania, reduced ER and urgent care clinic visits and improved clinical outcomes through virtual care.

A Pennsylvania-based support provider serving people with intellectual and/or developmental disabilities (I/DD) has reportedly saved almost $100,000 in emergency care costs over the past two years through telehealth.

Pittsburgh-based Mainstay Life Services, which currently supports roughly 400 people and their families across 42 sites, has partnered with New Jersey-based StationMD, which offers specialized telehealth services for people with I/DD in 21 states. Through that collaboration, StationMD has facilitated 245 telehealth visits over that two-year span.

According to a press release issued by StationMD, 92% of those visits were resolved without need of a medical transport, and 27% of those visits (67 visits) would have resulted in transport to an ER or urgent care clinic had telehealth not been available. This resulted in a savings of $98,758 in reduced hospital and emergency care costs.

“People with I/DD often have complex medical issues in addition to their underlying disability diagnosis," Maulik Trivedi, MD, FACEP, co-founder and chief strategy officer for StationMD, said in the press release. "Our clinicians are able to address and resolve over 90% of the medical concerns via our telehealth solution. We’re providing a backbone of care and serving as a critical medical resource 24/7 for individuals, families, and support staff.”

The savings point to the value of virtual care for a specific population that faces extra challenges in accessing healthcare. Whether living at home or in a structured setting, people with I/DD often need specialized care and aren't able to easily visit a doctor's office or clinic.


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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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