August 20, 2021
VOR 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.

VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

What Is An Institution?
It's Not What You Think.

By Amy S. F. Lutz, Psychology Today, August 16, 2021


You know what an institution is, don’t you?

A short animated video from The Arc, a national advocacy organization for the intellectually and developmentally disabled, features an image we all recognize: a big, brown building (helpfully labeled “Institution”), a tall black fence, sad inmates. In large part due to examples like Willowbrook State School and Pennhurst State School and Hospital, which were publicly revealed to be abusive and overcrowded, this is what we all think of when we think of institutions for the cognitively impaired.

But as Congress prepares to debate the Better Care Better Jobs Act, which would direct hundreds of millions of dollars into Medicaid Home and Community Based Services (HCBS) at the expense of “institutional” settings, it’s critical to ask: What exactly counts as an institution, today? It may not be what you think.

Are Institutions Big?

Probably the first thing most people think is that institutions are really large. Pennhurst at its height housed almost three thousand residents, Willowbrook had twice that number. So when disability rights advocates sought to set a size limit on residential settings for the intellectually and developmentally disabled, they chose a much lower number: four. Yes, certain advocates defined more than four unrelated people living together as an institution.

That was about ten years ago; now that number has apparently dropped even lower. In a recent op-ed in Bloomberg, Ari Ne’eman, founder of the Autistic Self Advocacy Network, argued that group homes are too institutional as well. This leaves only the family home, adult foster care (euphemistically dubbed “lifesharing” in some states), and individual apartments or homes as the only acceptable residential settings, in the view of some.

Although policymakers have been hesitant to push back against this, in my view, implausibly bold redefinition, or defend the obviously expansive middle ground between 6,000 and 4, that may be changing. In a widely circulated June 2021 letter to Pennsylvania State Representative Brian Fitzpatrick, Anne Marie Costello, Acting Deputy Administrator and Director of the Centers for Medicare and Medicaid Services (CMS) clarified that “CMS does not believe that there is a threshold number of individuals receiving services beneath which it can be presumed that a setting would meet the HCBS settings criteria, or above which it can be presumed that a setting would not meet the criteria.”

This position implicitly acknowledges the arguably ideological basis of the size limits demanded by Disability Rights advocates, which are not supported by any data. The few studies that have examined different residential settings are so flawed (most notably, failing to control for severity of disability), that David Mandell, ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, wrote in 2017, “Right now, our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”

Are Institutions "Isolating" and "Segregating"?

So, if we can’t recognize an institution by its size, are there more useful criteria? Many disability rights advocates repeatedly describe institutions as “isolating” and “segregating”—evoking inmates like the ones in the Arc video languishing behind the fence. But many of the prime targets for these advocates actually prioritize facilitating inclusion in the greater community.

Residents at First Place—an apartment building located right in the middle of Phoenix—take classes at the local university, as well as work and play in the city that is literally right outside its door. And in July, Democratic analyst David Axelrod described his intellectually disabled daughter Lauren’s fulfilling life at Misericordia, a disability-specific campus in Chicago, for The New York Times, noting that “she and her friends walk to nearby shops and restaurants… [as well as] vocational activities and jobs on campus and off.”

On the flip side, nothing guarantees that intellectually and developmentally disabled individuals won’t be isolated or segregated in even the smallest settings. As the mother of a 22-year-old son with severe autism, I can’t imagine anything more isolating than Jonah alone in his own apartment with one unsupervised direct support professional (DSP), who might just as soon spend his shift texting his girlfriend while Jonah stims on his iPad rather than make the much more demanding effort to facilitate his favorite activities, like swimming, hiking, and eating at Wendy’s.

Where the Focus Should Be

Instead of getting caught up in the above debates, in my view, the focus should be on providing the services people need.

Here is the real tragedy at the core of this debate: Nothing is more isolating, segregating, or restricting than severe intellectual and developmental disability. I know autistic individuals who have blinded themselves through repeated blows to the head; concussed their caregivers; and kicked the windows out of cars. Many never leave their homes, simply because their parents can’t safely manage their behaviors in public spaces. The “institution” straw man may be interfering with securing the intensive, specialized supports many profoundly cognitively impaired people require to enjoy meaningful, engaged, and included lives.

100 Years: A History of the Pineville Facility

By Terry Lafleur, KALB News, August 17, 2021

The following article, submitted by Terry LaFleur, discusses the history of Pinecrest as the facility celebrates 100 years of service:

Pinecrest Supports and Services Center is a state run Intermediate Care Facility (ICF) in Pineville, Louisiana.

In 1884, one hundred and twenty nine patients were admitted to East Louisiana Hospital from the New Orleans Asylum. These 129 individuals would now be what we refer to as individuals with an intellectual disability. In 1914, the Superintendent of East Louisiana Hospital recommended the establishment of a specialized facility for these type patients, as the mental health hospital was not the best place to meet their unique needs. Subsequently, legal authorization from Legislative Act. No. 141 of 1918 created Pinecrest.

In 1921, one thousand acres of land were purchased from the Beauregard Development Company, utilizing portions of Camp Beauregard that were employed during World War I. On December 21, 1921, Pinecrest officially opened with a total of 37 patients admitted. The total annual budget for 1921 was $50,000.

During these times, the facility was completely self-sufficient, with a working vegetable farm, dairy farm operation, and livestock such as chickens, hogs, and cattle. This was during a time when the only way the facility could operate was through self-sufficiency due to budget constraints. Years later, additional funding was given to the agency so they could begin to purchase instead of produce.

Currently, Pinecrest consists of 947 total acres with 163 acres leased to Ward 9 recreational facility, giving the facility 784 acres to care for and operate on. There are 335 total buildings on campus with 158 heated and cooled buildings. There is an on-grounds bakery, a greenhouse, a canteen, a medical observation unit, a fully functional Dental Clinic, a Park, a baseball field, an equine therapy program, a barn with various animals for pet therapy, a swimming pool, a gymnasium, and a school operated by the Department of Education which is operational year round focusing on the specific curricula needs for the individuals supported. The Pinecrest School also has a GED program for the folks who want to obtain their GED.

On campus, 40 buildings are currently used as residential homes. There are 12 day service buildings used for skill acquisition training activities, active treatment and training, and vocational learning opportunities. Pinecrest has various work training options, including the on campus canteen, bakery, on grounds delivery services, food service skills through the kitchen, landscaping and lawn care through the greenhouse, contracts with community-based agencies, and many more job opportunities.

In December 1921, Pinecrest had 37 residents, and during the 1970s, the facility had over 2,100 residents. In 2021, Pinecrest supports 430 residents with intellectual disabilities who have significant medical, behavioral, and psychiatric challenges. Pinecrest also has well over 100 individuals with autism who receive specialized programs and training for their unique needs. Pinecrest also has a specialized geriatric program for individuals with an intellectual disability and their unique issues associated with aging and dementia.

Pinecrest offers a wide array of clinical services such as; psychology, occupation therapy, physical therapy, speech therapy, medical services, nursing, recreation services, psychiatry, and neurology, among other specialized clinical services needed by the individuals supported by Pinecrest.

For one hundred years, Pinecrest has continuously supported individuals with intellectual and developmental disabilities that many others cannot serve or refuse to serve throughout the years. Pinecrest’s current focus is on specialized programming and individualized treatment and skills acquisition training focused on independence, autonomy, self-advocacy, and skills development to increase each resident’s ability to live independently.

Pinecrest continues to serve ID and DD residents with psychiatric and mental health issues, geriatric/dementia care, and autism and is a safety net for La. Dept. of Health’s intellectual and developmental disabilities system. Pinecrest is available for individuals in need of services for whom there are no services available, current services are no longer adequate and /or an individual status change requiring more intensive assessment, intervention and treatment planning. Pinecrest does provide money for the state at a rate of roughly 62% federal dollars and 28% state dollars.

National News:
Hopes Run High For SSI Overhaul
By Michelle Diament, Disability Scoop, August 20, 2021
As federal lawmakers put together a $3.5 trillion budget bill, there are expectations that it could bring major changes to the Supplemental Security Income program for the first time in decades.

There is pressure in both the U.S. Senate and House of Representatives to include improvements to the SSI program in the reconciliation package that’s in the works. That could mean growing the program’s benefits and increasing the asset limit — which has gone unchanged since 1984 — among other tweaks.

Currently, eight million Americans receive SSI benefits, including many with disabilities.

Individuals get a maximum federal payment of $794 per month from the program while couples can see up to $1,191 per month, though some states add to these figures. In order to remain
eligible, individual beneficiaries can have no more than $2,000 to their names and couples are limited to $3,000 in assets at any given time.

As a candidate, President Joe Biden supported several changes to the SSI program including growing benefits to at least the federal poverty level, raising the asset limit and eliminating penalties for marrying or receiving what’s known as in-kind support, which is when a friend or family member helps pay for rent, food or other things. That has proponents of change optimistic.

Biden says US will Require Nursing Homes get Staff Vaccinated or Lose Federal Funds
By Jeremy Diamond and Tami Luhby, CNN Politics, August 18, 2021

(Note: At the moment, this requirement does not apply to ICFs or HCBS group homes for people with I/DD)

President Joe Biden announced on Wednesday that he is directing all nursing homes to require their staff be vaccinated against Covid-19 in order to continue receiving Medicare and Medicaid funding.

Biden said he is directing the Department of Health and Human Services to draw up new regulations making employee vaccination a condition for nursing homes to participate in Medicare and Medicaid. The decision on nursing home staff represents a significant escalation in Biden's campaign to get Americans vaccinated and the tools he is willing to use, marking the first time he has threatened to withhold federal funds in order to get people vaccinated.

"Now, if you visit, live or work at a nursing home, you should not be at a high risk of contracting Covid from unvaccinated employees. While I'm mindful that my authority at the federal government is limited, I'm going to continue to look for ways to keep people safe and increase vaccination rates," the President said during a speech at the White House.

The move comes as the more transmissible Delta variant now accounts for 99% of Covid-19 cases in the United States and as data shows a link between low vaccination rates in certain nursing homes and rising coronavirus cases among residents.

The Delta variant has spurred a jump in daily new cases from a low of 319 on June 27 to nearly 2,700 on August 8, according to Centers for Medicare & Medicaid Services. Many are in facilities in areas with the lowest staff vaccination rates.

In the seven states in which less than half of nursing home staff is vaccinated, weekly cases were 7.9 times higher in the week ending August 1 than they were in the week ending June 27. Meanwhile, in states that have vaccinated a larger share of staff than average (more than 60%), cases reported in the week ending August 1 were only three times higher than cases reported in the last week of June.

About 1.3 million people are employed by the more than 15,000 nursing homes that participate in Medicare and Medicaid. Some 62% of those workers are vaccinated nationwide, according to CMS data, but the figure ranges from 44% to 88% depending on the state.

A nursing home industry group, however, said imposing a mandate only on such facilities could cause a "disastrous workforce challenge," instead arguing all health care workers in all settings should be subject to the requirement.

"Focusing only on nursing homes will cause vaccine-hesitant workers to flee to other health care providers and leave many centers without adequate staff to care for residents. It will make an already difficult workforce shortage even worse," said Mark Parkinson, president and CEO of the American Health Care Association and National Center for Assisted Living, which represents 14,000 facilities. "The net effect of this action will be the opposite of its intent and will affect the ability to provide quality care to our residents."

More than half of the nursing home and assisted living providers have lost key workers due to staff quitting last year, according to a June survey by the group. Some 94% of nursing home providers and 81% of assisted living communities said they have had a shortage of staff in the last month, the survey found.

State News:
Texas - COVID-19 Cases in Nursing Homes Escalating Again
By David Barer, Avery Travis, KXAN, August 13, 2021
COVID-19 cases were nearly nonexistent just a month ago in Texas nursing homes. But now, as the virus’ delta variant rages through the state, long-term care facilities are seeing a rise in cases yet again.
The escalating number of active cases has advocates for vulnerable long-term care residents concerned about the vaccination rate of facility staff and resident visitation rights.

Long-term care facilities were ravaged by COVID-19 in 2020. In Texas alone, there have been more than 70,000 total cases and about 9,000 resident deaths. Most of those cases and deaths occurred from June 2020 through January 2021, according to Texas Health and Human Services Commission records. But after the disastrous first two waves of the virus, state and federal officials pushed hard to get nursing home residents vaccinated quickly.

Active resident cases plummeted in January from a high of nearly 7,000 down to just 34 in June 2021, according to the state.

The latest summer 2021 surge has seen cases grow 10 times in less than a month, HHSC records show.

Amanda Fredriksen, Director of Advocacy with AARP Texas, said, “the real challenge is on the staffing side and making sure that staff are getting vaccinated.”

Only about one in five nursing facilities has more than 75% of their staff vaccinated, said Fredriksen.

“The flip side of that is that means four out of five facilities are at some level below that,” she said. “That’s really concerning. And for that reason, AARP is now essentially saying that nursing facilities should be requiring staff and residents to get the vaccine.”
Advocating for a vaccine mandate in nursing homes is a new position for AARP, said Fredriksen, but it’s “too risky” having unvaccinated staffers in close contact with vulnerable residents.

State-run facilities also getting hit

Texas has 13 State Supported Living Centers for medically-fragile people and those with developmental disabilities and behavioral problems. There are currently seven confirmed cases in residents, six of those in Austin. There have also been 50 confirmed employee infections, according to HHSC data.

Tammie Parker visits her sister Jackie in the Austin State Supported Living Center (Photo provided by: Parker family)

Tammie Parker’s sister, Jackie, lives in an SSLC due to her intellectual disability. Over time her sister has developed additional underlying health problems and Alzheimer’s disease. In an interview with KXAN, Parker credited the state facility with saving her 68-year-old sister’s life after she contracted COVID-19.

“Had she not been in the center, with that stellar care, I really have my doubts that she would have survived this,” Parker said.

She said the facility leadership told families that 98% of their staff was vaccinated against the virus.
Parker cried at the thought of hugging her sister again one day, without a mask.

“I hope that it happens. I don’t know that it will, but I hope,” Parker said. “I just love that girl.”

Massachusetts - DDS May Be Violating Federal Law in Not Offering Wrentham and Hogan Centers as Options for Care
By Dave Kassel, COFAR Blog, August 18, 2021

Recent reports from the Department of Developmental Services (DDS) to the state Legislature show a continually declining number of residents at the Wrentham Developmental Center and the Hogan Regional Center, and indicate there were no new admissions to either facility last year.

The reports have been submitted to the House and Senate Ways and Means Committees in compliance with a requirement each year in the state budget that DDS report on efforts “to close an ICF/IID (Intermediate Care Facility for individuals with intellectual and developmental disabilities).”

The reports appear to confirm that DDS is not offering ICFs/IID (or ICFs/IDD) as an option to persons waiting for residential placements in the DDS system.

If so, that would appear to be a violation of the Home and Community Based waiver of the federal Medicaid Law (42 U.S.C.1396n, s. 1915), which requires that intellectually disabled individuals and their guardians be informed of the available “feasible alternatives” for residential placement and care.
In addition, the federal Rehabilitation Act (29 U.S.C., s. 794) states that no disabled person may be excluded or denied benefits from any program receiving federal funding.

The Wrentham and Hogan Centers, and three group homes at the former Templeton Developmental Center are the only remaining ICFs/IDD in the state. As such, they meet more stringent federal requirements for care and conditions than do other residential facilities, such as group homes, in the DDS Home and Community Based Services (HCBS) system.

The state budget language requiring reports on efforts to close ICFs/IDD appears to go back as far as Fiscal 2012, and it implies a bias in the Legislature against those facilities.

Maine Mandates COVID Shots for Health Care Workers within Next 5 Weeks
Staff Reporting, Foster's Daily Democrat, August 12, 2021

Health care workers in Maine who have not already been fully vaccinated for COVID-19 will be required to complete the process by Oct. 1, under a new policy announced Thursday.

Although that deadline is seven weeks away, the timeline gives health care workers just five weeks to receive their needed shots, since a person is not considered to be fully vaccinated until two weeks after their final dose, according to state officials.

The administration of Gov. Janet Mills cited an existing law that gives the state authority to require certain vaccinations of people who work in health care settings as the legal basis for the emergency rule issued by the Maine Department of Health and Human Services and Maine Center for Disease Control and Prevention.

The policy applies to people employed by a hospital, multi-level health care facility, home health agency, nursing facility, residential care facility or intermediate care facility for individuals with intellectual disabilities that is licensed by the State of Maine. The emergency rule also requires those employed by emergency medical service organizations or dental practices to be vaccinated for COVID-19.

Pennsylvania Department of Health to issue Vaccine Mandate for Workers in State-Owned Health Care Facilities
By Amber Gerard, WGAL-TV, August 17, 2021

The State Department of Health has mandated that all employees that work in state-owned healthcare facilities must be vaccinated or given regular Covid-19 tests for those who choose not to be vaccinated.

With staff shortages already on the rise in nursing homes in the Susquehanna Valley, some centers are concerned that a vaccine mandate could affect their employee numbers even more.

VOR Bill Watch:
[Please click on blue link to view information about the bill]


Congressman Glenn Grothman (R-WI) has introduced two bills in the House to support
Vocational Centers and 14(c) Wage Certificates:

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.


H.R.4131 & S.2210 - The Better Care Better Jobs Act - 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.

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 - 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.
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