August 26, 2022

VOR Comments on House Energy and Commerce Republicans' Policy Statement

The Republican members of the House Energy and Commerce Committee submitted a policy statement recently and asked for the public to submit comments. VOR found several points of agreement, and several policies that we believe should be expanded to ensure that they cover the needs of the entire community of people with I/DD, not only those who receive waiver services or participate in competitive integrated employment.

To view the E&C Republicans' policy statement and VOR's comments, please click here

Editorial Comment: 

Address Abuse in 'Community-Based' Settings, Too

By John Hirschauer, The American Conservative, August 19, 2022

The Preventing Abuse and Neglect of Vulnerable Americans Act, a new bill co-sponsored by Senators Kyrsten Sinema (D-Ariz.) and Mark Kelly (R-Ariz.), would require the Secretary of Health and Human Services to "make certain information" about intermediate care facilities for individuals with intellectual disabilities (ICF-IIDs) "available on a public website," including substantiated reports of abuse and neglect. It also calls for the creation of an "Advisory Council," composed of people with I/DD, guardians of ICF-IID residents, "[a]dvocates for individuals with intellectual and developmental disabilities," and other parties. The council would make recommendations to Congress on how to reduce incidents of abuse, neglect, and exploitation in institutional settings for people with I/DD. The bill was prompted by several incidents of abuse at Hacienda, a private ICF-IID in Arizona.

Today, the overwhelming majority of people with I/DD receiving Medicaid services are doing so in "the community." As of 2016, 92 percent of Medicaid service recipients with I/DD receiving residential services did so in "the community," and 8 percent did so in an ICF-IID (an "institution"). This is the result of a decades-long effort by disability-rights groups to block access to institutional care by "closing the front door"—that is, closing admissions to institutions by law.

The average ICF-IID client today has more intense service needs than the average client served in a home- and community-based setting. Many residents have co-occurring mental illnesses like schizophrenia, severe behavioral challenges related to autism, or medical conditions that require intensive, 24/7 support. Given their size, ICF-IIDs are able to economize in ways that smaller facilities cannot, and can serve patients who may otherwise have required inpatient psychiatric care or placement at a nursing home.

Like every state, Arizona's disability-services system is overwhelmingly focused on delivering "community-based," rather than "institutional" supports. At one time, Arizona's largest institution, the state-operated Arizona Training Program at Coolidge, housed nearly 3,000 patients. Admissions to the institution were closed by the state legislature in 1979, and as of 2017, only 63 patients remained. As of 2018, only 127 people with I/DD in Arizona lived in ICF-IIDs. By comparison, over 33,000 individuals with I/DD in Arizona receive services in "home- and community-based settings."

It is curious that the Preventing Abuse and Neglect of Vulnerable Americans Act, introduced by two Arizona senators, does not apply to "community-based" settings. After all, between 2019 and 2020, there were over 10,000 reported incidents of abuse and neglect in the state's HCBS system. Why don't they subject "community-based" settings to the same heightened scrutiny as ICF-IIDs? Why not require "community-based" settings to post substantiated incidents of abuse on the internet, or have outside "advocates" determine their fate in Congress?

Read the full editorial here

Link to the Senate bill         Link to the House version of the bill        

Zoller said he’s lost in-home caregivers to Amazon distribution sites, and fast food places like Quiznos and McDonalds. 

Zoller pointed out that a restaurant “can raise the price of a burrito” in order to pay people a better wage. “I can’t. If no one shows up to work, I can’t provide services to my daughter.”

The crisis is not isolated to Georgia. Nationally, the number of caregivers serving people with disabilities has dropped dramatically in the last few years. The U.S. Department of Labor Statistics estimates that the field has shed some several hundred thousand jobs since the early days of the pandemic.

Diane Wilush, president and CEO of United Cerebral of Georgia and South Carolina, said that due to the mass exodus of workers, the system is being held together by a “shoestring of dedicated intellectual and developmental disabilities providers.”

“Without a reliable, well trained, committed and competitively compensated workforce, nothing that the committee recommends will have the intended consequence of improving the system because we don’t have the staff to deliver the services,” she said.

Continued

Oklahoma Still Faces Staffing Shortages for Disability Services

By Kayla Branch, The Frontier, August 23, 2022     

Laura Windom’s 26-year-old brother Jonathan relies on her as his guardian after both their parents died over the last year. Jonathan is autistic, nonverbal and also struggles with self-harming outbursts.

Jonathan bounced around from various care facilities for people with developmental disabilities starting in 2020, until his care needs became too much to handle for providers, Windom said. The facility he was in last August told Windom she had 30 days to come up with another solution before he had to move. 

Out of options, Windom built a tiny house for her brother in the backyard of her Ponca City home last fall with its own gate and porta-potty.

“We’re out here surviving,” she said. “We’re just doing our best.” 

Jonathan has been on the Developmental Disability Services waitlist for several years. The Oklahoma Department of Human Services oversees the list to get individuals approved for waivers that provide funding for an array of helpful services beyond what regular Medicaid coverage offers, like employment support, home modifications and physical, occupational or speech therapy. 

Windom is hopeful the waiver will allow for more options for Jonathan’s care if his application is approved, but she worries that the right options still won’t be available. For individuals with special medical or behavioral needs, it can be difficult to find appropriate care even with a waiver. In Kay County, where Windom lives, there are only a handful of local providers available. 

Staffing shortages could pose a problem as the state aims to eliminate the roughly 4,663-person disability services waiting list over the next two years. Even though lawmakers approved funding for a historic 25% rate increase for direct care staff this year, it’s only about half of what is needed to offer competitive pay to recruit and retain workers, providers say. 

Oklahoma providers have faced a staffing crisis for years and struggled to provide care to the 5,600 people who are already receiving waiver services. The coronavirus pandemic and record-high inflation have made the shortage of direct care staff even more pronounced. 

Samantha Galloway, interim director of DHS, said the agency is aware of people with developmental disabilities who can’t get the level of services they need because of staffing shortages. 

“This job is much more challenging than serving in a restaurant, and this rate reimbursement doesn’t even become competitive to that,” said Elijah Blankenship, chief operating officer for the service provider Gatesway Foundation. “For me, it speaks to the long-term issue that Oklahoma has had of not prioritizing people with disabilities.” 

Continued

Wisconsin - 'Not Enough Places for Them to Go'

Kismet Advocacy LLC was the fourth special needs program Heather Schmid counted on to care for her autistic child in the last six years. On July 13, it was the fourth program to let her down.

When Kismet Advocacy closed that day after workers walked out, it left parents like Schmid scrambling to find a replacement for the in-home, center-based and school program services for children with "complicated mental health diagnoses, trauma, significant behaviors and autism" that Kismet advertised on its website. Amy Jo Timm, the owner of Kismet, said the company was actively serving 73 clients, roughly 40 from Brown County, when it shut down. 

Schmid's daughter, Ainsley, an 18-year-old who was born deaf, is non-verbal autistic and has severe developmental disabilities, requires one-on-one care at any program she attends. However, Schmid has found there are few programs in Brown County able to provide those resources. 

Kismet provided care services for Ainsley for nearly four years, and those services continued after she turned 18, despite aging out of the children’s disability services program in January. 

Schmid had hoped to transition her daughter into adult services but was still relying on Kismet when it closed because she hadn't found a program that could provide the full-time, one-on-one care her daughter needs. Kismet's closing created new urgency in that search, but she still has not found a service that can meet her child's needs.

"I have been asking questions for years about what happens when she transitions out of the child services with the county and into adult services," Schmid said. "I was always reassured that adult services, there's so much out there, everything will be fine. You'll have your pick of where you want to send her. ... It has been a nightmare since January." 

Kismet's closure, originally expected to last 30 days, was a result of the company staff dwindling from nearly 30 to five employees; several staff members said they resigned because they had not been paid.

Continued

Below are two articles that our readers might find interesting. One concerns what happened when a private equity firm took over a nursing home previously run by a charitable organization The other shows some of the challenges faced by individuals at the "high functioning" end of the autism spectrum. 

When Private Equity Takes Over a Nursing Home

By Yasmin Rafiei, The New Yorker, August 25, 2022

When St. Joseph’s Home for the Aged, a brown-brick nursing home in Richmond, Virginia, was put up for sale, in October, 2019, the waiting list for a room was three years long. “People were literally dying to get in there,” Debbie Davidson, the nursing home’s administrator, said. The owners, the Little Sisters of the Poor, were the reason. For a hundred and forty-seven years, the nuns had lived at St. Joseph’s with their residents, embodying a philosophy that defined their service: treat older people as family, in facilities that feel like a home.

St. Joseph’s itself was pristine. The grounds were concealed behind a thicket of tall oaks and flowering magnolias; residents strolled in manicured gardens, past wooden archways and leafy vines. Inside the bright, two-story building, the common areas were graceful and warm—a china cabinet here, an upright piano there. An aviary held chirping brown finches; an aquarium housed shimmering fish. The gift shop, created in 2005, to fund-raise for tsunami relief in the aftermath of the Indian Ocean earthquake, sold residents’ handmade aprons and dish towels. People gathered everywhere: in line for the home’s hair salon, over soup in the dining rooms, against handrails in the hallway, where the floors were polished to a shine. “Take a deep breath,” a resident, Ross Girardi, told me, during a visit in May of 2021. He reclined in a plush armchair. “Deeper! What don’t you smell? A nursing home.”

The Little Sisters of the Poor was founded by Jeanne Jugan, who, in the winter of 1839, took in an elderly widow off the streets of Brittany. Jugan is said to have carried the woman, who was blind and partially paralyzed, up her home’s narrow spiral staircase—and given up her own bed. (Jugan herself slept in the attic.) From this first act of care, the Little Sisters grew. Jugan took in two more women, then rented a room to house a dozen. A year later, she acquired a former convent to support forty elderly people. Charles Dickens, after visiting one of Jugan’s homes in Paris, described the experience in the English magazine Household Words. “The whole sentiment,” Dickens wrote, “is that of a very large and very amiable family.”

At the organization’s peak, in the nineteen-fifties, the Little Sisters of the Poor owned fifty-two nursing homes in the United States. Today it runs twenty-two. “In general, we like to have ten Little Sisters in each home,” Sister Mary John, a former assistant administrator at St. Joseph’s, said. But, since 1965, the number of Catholic sisters in the U.S. has dropped from roughly a hundred and eighty thousand to some thirty-nine thousand, according to the Center for Applied Research in the Apostolate. As a result, the Little Sisters have withdrawn from many of their nursing homes. Typically, the facilities have been sold to nonprofits. A large Catholic health-care system had expressed interest in buying St. Joseph’s, as had the Catholic Diocese of Richmond. “But the pandemic and the lockdowns of nursing homes made it difficult,” Sister Mary John said, of securing a buyer. In the spring of 2021, an offer materialized from the Portopiccolo Group, a private-equity firm based in Englewood Cliffs, New Jersey, which then had a portfolio of more than a hundred facilities across the East Coast. “They said they like to keep things the way they are,” Sister Mary John told me.

The deal was finalized by June. Portopiccolo’s management company, Accordius Health, was brought in to run the home’s day-to-day operations. Staffers recall that, at an early town hall, Kim Morrow, Accordius Health’s chief operating officer, repeatedly said the company wouldn’t institute significant changes. But many staff members felt a disconnect. Someone asked if the number of residents in each room would change. A staffer remembered Morrow saying, “That might change. We might double it.” (Morrow doesn’t recall saying so.) At another town hall, Celia Soper, Accordius Health’s regional operations director, told St. Joseph’s staff, “We see that you all work hard. But it’s time we start working smart.”

Nearly a quarter of the hundred-person staff had been with the home for more than fifteen years; the activities director was in her forty-fifth year. But the ownership change precipitated a mass exodus. Within two weeks, management laid out plans to significantly cut back nurse staffing. Some mornings, there were only two nursing aides working at the seventy-two-bed facility. A nurse at the home, who spoke on condition of anonymity for fear of retribution, told me, “It takes two people just to take some residents to the bathroom.” (When reached by e-mail, a Portopiccolo spokesperson said, “We never made any staffing cuts during the transition.”)

The home was renamed Karolwood Gardens, and the new management filed for a license to admit higher-needs residents, who can be billed at higher rates through Medicare. The aquarium on the second floor disappeared. So, too, did the aviary. Residents’ crafts were removed from the gift shop. No longer did the kitchen serve an eclectic variety of main dishes: turkey tetrazzini, salmon with lobster sauce, or Reuben sandwiches. Now residents were commonly given an option of ground beef. Some days, the kitchen was so short-staffed that the dining hall wasn’t set up, and residents took meals alone in their rooms.

The attentiveness of the nursing staff plummeted. Mary Cummings, a ninety-seven-year-old resident who had lived at St. Joseph’s for six years, went seven days without a bath. Betty Zane Wingo, a ninety-four-year-old resident, went several months without having her hair washed. A resident who suffered from a severe lung disease told me that, one evening, her oxygen tube slipped out, and it took an hour and a half and a call to 911 to get it plugged back in. Several family members told me they called the nursing station to express concerns but that no one picked up. On morning shifts, the home’s nurse aides now changed briefs so saturated with urine they’d turned brown.

Read the full article here (free for a limited time!)

Why Many People With Autism Dislike Functioning Labels     

By Jessica Penot LPC, Psychology Today, Aigist 23, 2022

If you are an autistic person who can hold a job and pay bills, you will hear two things. You hear “you don’t seem autistic” and “you must be high-functioning."

I think a lot of people mean to say these things with great kindness. They are trying to tell us that we seem normal, which to them is often the highest compliment they can give. After all, who doesn’t want to be normal?

The problem is that if you feel completely abnormal, the compliment is lost on you and can be heartbreaking and invalidating. Even if you can complete daily living tasks and succeed in some areas of life, if you have autism, beneath that, you feel profoundly other. Life is a struggle.

Those of us that are perceived as high-functioning are just very good at masking. Masking is a skill we learned in childhood and usually is the result of going through treatments that taught us social skills or parenting, and socialization that taught us any time we did anything that made us happy or comfortable is wrong. We were taught to mask by growing up in a world in general that has sent us the message that all our natural behaviors are aversive.

We adapt to these messages, learn to hide all our natural impulses, and try to act in a way that makes other people less upset. I say "less upset" because my behavior still consistently upsets people. It just doesn’t upset them as much as it would if I were to stop masking. So, masking not only teaches us to hate any real part of ourselves, but it teaches us to keep human interaction superficial, lest we be discovered for the aliens we are.

One of my favorite writers about living as an adult with autism, Pete Wharmby, describes masking as the “conscious or subconscious effort that an autistic person makes to appear neurotypical to the people around them. It’s an intensely resource-intensive activity that is exhausting to maintain.”

In their article, Death by Suicide Among People With Autism: Beyond Zebrafish, South et al (JAMA, 2021) address the undiscussed epidemic of suicide amongst adults with autism. In it, they conclude that the act of masking is a significant contributor to our high suicide rates.

So when we are called high-functioning, it often invalidates how disabled we feel and how much we struggle to do daily living skills, mask, and maintain. It invalidates our life experience. It reminds us that what people want is for us to continue to appear normal and to continue to mask, despite the hardship masking forces us to endure.

Continued

CMS Pumping $25M More Into HCBS Money Follows The Person Program

By Patrick Filbin, Home Health Care News, August 22, 2022

The U.S. Centers for Medicare & Medicaid Services (CMS) announced Monday that it will distribute an additional $25 million to expand access to home- and community-based services (HCBS) through Medicaid’s Money Follows the Person (MFP) program.

The $25 million will be going to new states and territories, increasing the total number of states and territories participating in MFP to 41.

Up to $5 million will be designated for three states each: Illinois, Kansas and New Hampshire.

The additional $10 million will be sent to American Samoa and Puerto Rico, marking the first time MFP grants have been made available to territories.

“We’re putting the full weight of this agency behind solutions that can meet people where they are and help get them to where they want to be when it comes to health care,” CMS Administrator Chiquita Brooks-LaSure said in a press release. 

The program has provided states with over $4 billion for people who choose to transition out of institutions and back into their homes and communities.

The $25 million will be used to establish partnerships with community stakeholders in the five areas. It will also help develop community transition programs and recruit HCBS providers.

A new report from CMS showed that MFP has helped facilitate more than 107,000 transitions out of institutional settings since 2008.

“The Biden-Harris Administration is deeply committed to ensuring everyone is able to get the high-quality care they need – within the comfort of their own home or community,” Xavier Becerra, secretary of the U.S. Department of Health and Human Services, said in a press release. “Today we are expanding access to home and community-based services so even more states and territories are equipped to best serve the millions of seniors and people with disabilities across the country.”

In March, CMS doled out $110 million to 20 new states for further expansion of MFP.

Read the full article here

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