Schedule of Events

By Ryan Matheny, KMA News, May 19, 2022

State lawmakers are still debating how they will fund various transition costs associated with the upcoming closure of the Glenwood Resource Center.

Last month, Governor Kim Reynolds announced the state would close the state-run facility that provides residential care for Iowans with intellectual and developmental disabilities in the wake of a federal investigation into abuses by staff. This week, members of the Senate Appropriations Committee debated a funding bill for the Department of Health and Human Services. The House version of the bill -- which was passed prior to the closure announcement -- does not include any funding for transitioning residents to the state's other facility in Woodward or to community-based services. State Senator Mark Costello -- a Republican from Imogene -- chairs the HHS Appropriations Subcommittee. He says discussions are ongoing about how to fund the transition over the next two years.

"There is going to be a transition cost here," said Costello. "Community providers will need to be built up and strengthened. I believe there will be money in there for that, a substantial amount."

Additionally, state officials announced that current staff at GRC would be offered retention bonuses to stay through the closure before finding new jobs. Costello says how to fund those bonuses remains a point of contention between House and Senate members and the Governor's office.

"We also need to make sure that the Resource Center -- now that the announcement's been made -- that people still stay there until the clients can be transferred," said Costello. "So we're having to spend some money to keep people there, so they don't go off and find another job right away. We are trying to work that out and that's one of the issues is we're trying to make sure where that money is coming from. That's one of the issues we're still trying to clear up here."

Costello says there is a chance the GRC transition could be funded using some of the American Rescue Plan money allocated to the state from Congress.

"There are discussions as to how we can fund that," said Costello. "Whether it's through money that the governor has and she can use different ways or whether we can do it in the budget. That is one of the things we want to verify before this budget is finalized."

Senator Joe Bolkcom -- a Democrat from Iowa City -- cautioned against using ARPA funds for something he says should clearly be included in the budget. ARPA funds are used at the discretion of the governor and are not subject to budgeting from legislators. Bolkcom also worries that using temporary funds to pay for an ongoing issue could present challenges.

"There will be a time in the next two years that the American Rescue Plan money is not going to be there," said Bolkcom. "This committee is going to have to dig in and find the money. We're going to lose all this (Federal Medical Assistance Percentage) money in '25, Medicaid is going to bump in '25 and I think we're going to see the final deal have a lot of American Rescue Plan money supporting basic stuff that the state of Iowa should be supporting. We're going to get some of this out-of-state money to support Iowa stuff. I think the committee is setting itself up for a pretty substantial cliff in two years."

By Cameron Morsberger, Lowell Sun, May 14, 2022 (updated May 20, 2022)

The Baker administration and Massachusetts House have proposed $230 million in the FY23 budget be put into a rate reserve to incrementally raise the pay of human services provider agency workers, such as health care and group home workers, aides, therapists and other specialists.

But with inflation, increased interest in hybrid work, and small wages, a great number of people are quitting their jobs for the retail or food industry. And it’s causing a workforce crisis that some warn may destroy the human services field entirely.

Chris Tuttle, CEO and president of health provider Bridgewell, said the severe lack of funding has threatened to shut down some of its services. Bridgewell has more than 100 programs across eastern Massachusetts, serving 6,500 people each year in group homes, habilitation programs and mental health clinics in Lowell, Danvers and Lynn.

Tuttle said the state funding for these nonprofits, provided through Chapter 257, is simply not enough. Without an additional $351 million — over double the current allotment from the state — they will not survive, he said. At the current salaries they provide, Tuttle said human services work is no longer sustainable, but they are at the mercy of the state.

“The Chapter 257 line item at $230 million sounds like a lot, and it is, but the median salary is roughly $16.79 an hour, which is only about $34,923 a year. That’s before taxes,” Tuttle said. “We cannot attract staff, and because we can’t attract staff, we cannot expand our services. And in all honesty, we’re going to have to start looking about potentially taking services offline.”

Since the pandemic, more than 5,000 people have yet to return to programs throughout the state primarily due to the staffing shortage. Many of those people, Tuttle said, have developmental disabilities and are thereby losing valuable life skills support.

A couple of years ago, Bridgewell had about 140 to 150 job openings, but now, 317 jobs are unfilled. That’s nearly a quarter of the organization, Tuttle said.

By Danielle Brown, McKnight's Long-Term Care News, May 9, 2022

About 11% of nursing home operators in Minnesota are considering selling their facility or closing their doors due to continued financial strain caused by the COVID-19 pandemic, a new survey has found. 

Findings were released Thursday by the Long-Term Care Imperative, a collaborative initiative by LeadingAge Minnesota and Care Providers of Minnesota. They reflect pressures occurring around the country, though Minnesota’s situation is believed to be worse than many others.

The analysis also revealed that the average nursing home is operating with a negative 8.7% operating margin and will lose about $900,000 annually. The poor financial performance is primarily driven by increased expenses, which includes wage increases and temporary staff use. 

“The staffing crisis is not brand new. We’ve had ongoing staffing issues in this profession, and until it’s viewed as a true profession where people want to come work in our communities, it is going to be a chronic problem,” Patti Cullen, president and CEO of the Care Providers of Minnesota said. “It needs to get addressed.”

Cullen added that the most surprising finding from the survey was that 44.8% of providers are operating on margins lower than negative 10%. 

“That’s unsustainable. Thinking about the ripple effect of that is pretty severe,” Cullen told McKnight’s Long-Term Care News on Friday. 

A separate survey recently found that Minnesota long-term care facilities have dealt with the most staffing shortages when compared to other states. 

Minnesota officials and lawmakers have pushed for solutions to address the shortages in the state, including calling for a $1 billion investment to boost pay for long-term care and other direct care workers and establishing a training program to increase the number of certified nursing assistants in facilities.

By Katie Mulvaney, The Providence Journal, May 16, 2022

The U.S. Department of Justice awarded the parents of a son diagnosed on the autism spectrum $75,000 in damages from the state for failing to ensure the family could access in-home services needed for the boy to continue to live at home. 

U.S. Attorney Zachary Cunha’s office announced Wednesday that justice officials had entered a settlement agreement with the Rhode Island Executive Office of Health and Human Services to resolve alleged violations of the Americans with Disabilities Act.

The settlement grew from a 2018 complaint made by the parents of the unnamed minor to the U.S. Attorney’s office, alleging that the state failed to provide their son with home support services under the Rhode Island Medicaid/Katie Beckett Program administered through the state Executive Office of Health and Human Services. The Katie Beckett program allows certain children under age 19 who have long-term disabilities or complex medical needs to become Medicaid eligible. 

The parents complained that the state authorized the boy to receive 25 to 34 hours per week of home-based therapeutic services and/or applied behavior analysis therapy in his family home beginning in at least 2014, according to Cunha’s office. The state provides such services to enable children with disabilities to remain in their own homes and communities. 

The parents alleged, however, that the state continually failed to reasonably adjust its policies to provide back-up care when staff became unavailable, and instead provided only half of the hours of services authorized per week, on average, federal prosecutors said. 

The parents said that the lack of needed services placed their son at serious risk of unnecessary segregation from the community. As a result, the parents feared that their son would be forced to leave their home and move to an institution. 

After the U.S. Department of Justice opened an investigation, the child entered an out-of-state residential treatment facility for several months.

Under the agreement, Rhode Island will modify its policies so that children with intellectual and developmental disabilities such as autism will receive the community-based services that they are authorized. It will require, too, that every family receive a family care plan, allow families to receive services from different provider agencies, and provide oversight to make sure children with disabilities receive authorized community-based services. The state will also create an ombudsman program to allow individuals and their family members to express concerns.

Press release from the Senate HELP Committee (Health, Education, Labor, and Pensions)

U.S. Senators Patty Murray (D-Wash.), Chair of the Senate Health, Education, Labor, and Pensions Committee; Elizabeth Warren (D-Mass.), a member of the Senate Finance and Banking, Housing, and Urban Affairs Committees; Ron Wyden (D-Ore.), Chair of the Senate Finance Committee; and Bernie Sanders (I-Vt.), Chair of the Senate Budget Committee, sent a letter to the Co-CEOs of the private equity firm KKR, blasting the company after a BuzzFeed News investigation revealed that following KKR’s acquisition of BrightSpring Health in 2019, the company provided grossly substandard care and unsafe living conditions in its intermediate care facilities (ICFs) – group homes for people with intellectual and developmental disabilities. Executives at KKR and BrightSpring are poised to cash out while patient safety and care quality is declining. The senators are seeking answers from KKR about its troubling business practices, which put the safety of patients at risk.  

“The BuzzFeed News investigation revealed that, after KKR’s acquisition, care at BrightSpring ICFs deteriorated, with regulators finding 118 instances of ‘dangerously low staffing’ in seven states – double the rate found in non-KKR owned facilities. During that same period, KKR boasted that the company increased BrightSpring’s revenue from $2.5 billion in 2018 to $5.6 billion in 2022. But there is no indication that these revenues were used to improve quality of care in ICFs: ‘conditions [at BrightSpring ICFs] grew so dire that nurses and caretakers quit in droves, a state prohibited the company from accepting new residents, and some of the most vulnerable people in its care suffered and died,’” wrote the senators. 

 

The senators called out the long-standing problem of private equity’s role in health care – which places short-term profit maximization above considerations for quality of care and patients. While KKR’s BrightSpring-owned small-scale ICFs in California, Indiana, Louisiana, North Carolina, Ohio, Texas, and West Virginia made up just 16% of ICFs, they accounted for a striking 40% of serious citations in these states. The BuzzFeed investigation revealed that nurses and other care workers had alarmingly high turnover rates, uncompetitive salaries, and inadequate training. 

 

BrightSpring and KKR’s failure to protect ICF patients and efforts to maximize profits also resulted in preventable injuries and deaths. In West Virginia, state officials accused BrightSpring of ignoring several warnings that led to at least one preventable death, and ordered BrightSpring to stop accepting new patients, eventually closing down 20% of the organization’s homes in the state. Managers at facilities reported facing pressure to keep homes full, even with patients they were unable to care for, to maximize profits.

By Amy S.F. Lutz, Inspectrum via Psychology Today, May 16, 2022

University of Toronto child neurologist Evdokia Anagnostou dropped a bombshell in her keynote at the annual meeting of the International Society of Autism Research (INSAR) in Austin, Texas, which may call into question the validity of the autism spectrum disorder (ASD) diagnosis.

Anagnostou and her colleagues had set out to use neuroimaging to identify brain differences unique to ASD, as compared to other neurodevelopmental differences like ADHD, OCD, and intellectual disability. And they did find that brain differences clustered into different groups—but not by diagnosis. In fact, brain scans could not distinguish children who had been diagnosed with ASD from those who had been diagnosed with ADHD or OCD.

“Dr. Anagnostou reported data from multiple papers that looked at over 3,500 children,” Dr. Alycia Halladay, Chief Science Officer at the Autism Science Foundation, explained to me. “These studies looked at multiple structural and functional features of the brain—including cortical gyrification (the way the brain folds in the cortex), connectivity of different brain regions, and the thickness of the cortical area—and found no differences based on diagnosis.”

Groupings did emerge, but they were along totally different axes. Added Halladay, “The brains themselves were more similar based on cognitive ability, hyperactivity, and adaptive behavior.” In other words, the brains of mildly affected autistic children looked much more like the brains of kids with ADHD than they did like those of severely autistic children.

If replicated, these findings could have tremendous implications for our current diagnostic framework.

In 2021, the Lancet Commission—a group of 32 researchers, clinicians, autistic individuals, and family members—called for the creation of a new label, “profound autism,” that would carve out those autistic individuals who also suffer from cognitive and language impairments and require round-the-clock supervision. “Anagnostou’s data converge nicely with the Lancet Commission’s proposal,” Halladay observed. “They provide biological evidence for a category that was originally defined solely by external criteria.”

At the very least. The real question is whether this work demands an even more radical re-imagining of our classification of neurodevelopmental differences. If, as Anagnostou’s data demonstrates, cognition and hyperactivity are much more correlated with brain difference than variables like social deficit that have been considered core symptoms of autism, then perhaps it’s time to scrap our current model and introduce new diagnoses based on these more salient dimensions. Aligning our diagnostic system with underlying biology is the first step in the development of targeted interventions for some of the most intractable and dangerous behaviors exhibited by the developmentally disabled, such as aggression, elopement, self-injury, and pica (the compulsion to eat inedible objects).

As Anagnostou opened her talk, “Nature doesn’t read the DSM.” But, as our understanding of the brain advances, shouldn’t the DSM reflect these divisions in nature?

Fragile X syndrome, the leading inherited cause of intellectual disability, is due to a genetic mutation that largely eliminates the fragile X protein, a critical element of normal brain development and function.

The fragile X protein modulates neuronal functions, including neurons within the so-called GABAergic system that regulates the activity of neural circuits. The protein’s absence throws that system off kilter, and so far, experimental therapies designed to reset the system by compensating for the missing protein’s functions have not been effective in clinical trials.

Now, researchers at Washington University School of Medicine in St. Louis have identified a previously unknown role for the fragile X protein in the GABAergic system. They have shown that the protein regulates the opening and closing of the GABA-A receptor in neurons from the brain’s memory center, thereby influencing how such neurons process information, a central part of learning and memory.

The findings, published May 17 in Cell Reports, indicate that the fragile X protein’s role is more complex than previously thought, and that finding effective therapies may depend on a more nuanced understanding of the myriad ways loss of this protein affects the brain.

“People think that since fragile X is related to the loss of a single protein, it is a simple disease that we can quickly understand and fix,” said senior author Vitaly A. Klyachko, PhD, a professor of cell biology & physiology. “But the reality is that the more we study, the more we understand it’s not simple at all. I think part of the reason why clinical trials fail may be because we don’t really understand what’s going on very well. It is possible that we need to fix more than one mechanism at the same time for patients to see any meaningful improvement.”

People with fragile X syndrome have intellectual or learning disabilities, social and behavioral problems, and characteristic physical features such as large ears and long faces. They also often are noted for their friendly dispositions. The condition affects about 1 in 7,000 males and 1 in 11,000 females, with males typically more severely affected. The fragile X gene is located on the X chromosome, so females inherit one good and one bad copy of the gene, but males have only the bad copy. There are no treatments that address the underlying cause.

Parent Giving

When we hear about autism spectrum disorder (ASD), we often think about small children and the challenges they will need to face throughout their lives, but most often than not we forget that these children will grow up and turn into young adults and then seniors.

Although autism can’t be cured, there are many approaches that you, as a caregiver - whether you are a beloved family member or a paid professional - can make to facilitate the life of an elderly that has been diagnosed with ASD.

Autism Spectrum Disorder can be diagnosed at any stage in life, however, when it is rather later than earlier, it can be a little more challenging - but not impossible - to adjust. If diagnosed at a later stage in life, usually, a series of changes in the daily routine and care needs to be made.

If the diagnosis was made in the early years, this is something that you will be more accustomed to and dealing with a senior with Autism could be a little less changeling for the family.

We must all agree that one of the most important aspects of our existence is having a good quality of life, and so, with that in mind, here are some great tips on how to take care of seniors with ASD.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

VOR OPPOSES:

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

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