December 13, 2019
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR and YOU:
VOR's Annual Year-End Fundraising Continues:
If you need a good reason to donate, just look at the state of DD Services across the country, as seen through the lens of the articles below.

Efforts continue to close state-operated facilities, to privatize the entire system and to put our loved ones' care into the hands of private equity and giant, for-profit insurance companies.

Abuse and neglect continue, as programs like Money Follows the Person continue to move people out of high quality care and into an admittedly broken, underfunded system that can't sustain itself.

Opponents of ICFs continue to call our facilities "isolating", while in truth, the group home system is far more isolating for many people.

Yet, we persist. We know the need for high-quality care. We know the need to protect human rights for people with intellectual and developmental disabilities.
And we continue to invest our time, money, and energy into improving the environment for our loved ones with I/DD.

Please help us to continue on this mission.
National News :
Congress Weighs Renewal Of Money Follows the Person
By Michelle Diament, Disability Scoop, December 12, 2019
After years in limbo, advocates say a deal is in the works to permanently renew a popular federal program that moves people with disabilities from institutions to the community.

A bipartisan proposal in the U.S. Senate would reauthorize Money Follows the Person. The Medicaid program gives states funding to pay for employment supports, housing and other services so that people with disabilities can transition from nursing homes and other institutional facilities to homes in the community.

Money Follows the Person officially expired in 2016 and has been teetering on collapse since then as Congress passed a series of short-term extensions, the latest of which runs out this month.

Under the new plan, however, the program would have no end date and it would be funded at $450 million annually for the next 10 years. The proposal is tucked inside a larger bill known as the Prescription Drug Pricing Reduction Act of 2019.

Service Disrupted: Managed Long-Term Services and Supports Falling Short for Adults with Intellectual and Developmental Disabilities
By Madison Tallant and Alice Dembner, Center for Consumer Engagement in Health Innovation, November 12, 2019
The rapid advance of managed care in Medicaid is newly enfolding many adults with intellectual and developmental disabilities (IDD). These consumers need a well-coordinated and broad range of home and community based long-term services and supports. To assess how these consumers are faring in managed long-term services and supports (MLTSS), we examined programs in eight states – Arizona, Arkansas, Iowa, Kansas, Michigan, North Carolina, Tennessee and Wisconsin. In these locales, the programs are all statewide but use a variety of models.

We found results ranging from somewhat beneficial to terrible. In no state have consumers resoundingly gained better access to the full range of high-quality, coordinated services they need.

The problems of MLTSS programs for people with IDD have caused states to rethink managed care as the model for IDD service system reform. This opens up space for advocates to introduce other ideas on how to improve and strengthen the IDD service delivery system.
Our report recommends the following promising practices, and offers action steps for state officials and consumer advocates:

  • Resist any plan to move IDD LTSS services into managed care solely to save money, and proceed with extreme caution in other cases
  • Authentically engage consumers in program planning, implementation and oversight
  • Build a robust provider network, including experienced case managers and direct service workers
  • Exercise strong oversight
  • Establish strong quality measures
  • Require consumer-centered policies in all aspects of MLTSS program design
Nation Experiencing Severe Shortage Of Autism Therapists
By Shaun Heasley, Disability Scoop, December 11, 2019
Most states don’t have nearly enough therapists trained to meet the needs of young people with autism, according to a first-ever review of the availability of applied behavior analysis, or ABA, providers.

The number of ABA professionals varies across the country, but is inadequate in almost every state, the study published this week in the journal Psychiatric Services found. ABA is the most common form of evidenced-based autism therapy.

Researchers analyzed 2018 data from the Behavior Analyst Certification Board, which certifies ABA providers, to determine the per capita supply of therapists in each state.

Findings from the study indicate that only one state — Massachusetts — exceeded the certification board’s benchmark for the number of providers needed to appropriately serve the population of children with autism.
Even when the researchers factored for each therapist taking on double the recommended caseload, they found that the supply of ABA professionals was still below the benchmark in 42 states and Washington, D.C.

The availability of ABA therapists was greatest in the Northeast, the study found. By contrast, no Midwestern state had over a third of the minimum number of recommended providers.

ABA professionals were most prevalent in states that spent more on public education and in places with higher median household income, according to the analysis.

Announcements:
Action needed to submit comments to the U.S. Commission on Civil Rights Regarding 14(c)

From Together For Choice:

Section 14(c) of the Fair Labor Standards Act continues to be under attack. Once again it is critical that we act to protect the work opportunities of our loved ones. The United States Commission on Civil Rights held a briefing in Washington, D.C. and is accepting comments through December 15 on the following topic: “Subminimum Wages: Impacts on the Civil Rights of People with Disabilities.” The way the topic is phrased makes it clear where the Commission is going. It uses the derogatory term “subminimum wage” and turns special wages that accommodate an individual’s abilities and helps them gain employment into a violation of their civil rights. 
 
\As we have previously discussed, special wages for those with disabilities is permitted under Section 14(c) of the Fair Labor Standards Act and has been in existence for over 80 years. This provision permits employers to pay individuals with disabilities a specialized wage based on their ability to perform the job. At no point does the statute refer to these wages as “subminimum.” The purpose of Section 14(c) is to help individuals with disabilities to obtain employment. No one is forced to work at 14(c) wages. Therefore, the statute preserves choices for our loved ones; it preserves their civil right to choose the employment setting that best suits them. 
 
Last spring when we asked you to submit comments on 14(c) to the Department of Labor, your response was overwhelming. There were far more comments supporting 14(c) than opposing it. It was important that the Department of Labor hear from the families that would be affected by a repeal of this important law. We must do the same now with our comments to the US Commission on Civil Rights. The briefing scheduled for last Friday, November 15, had a full list of previously selected speakers. Virtually all of the scheduled speakers oppose Section 14(c) and want to see it eliminated along with work programs designed to meet the needs of those with developmental disabilities. The Commission needs to understand that the repeal of Section 14(c) will mean the loss of employment for men and women with significant intellectual or developmental disabilities, like our loved ones. It is important that the Commission hear from us, the families and providers that serve those with intellectual disabilities. The Commission must recognize that there is no “one size fits all” solution when it comes to employment of individuals with disabilities. 
 
The real civil rights issue here is choice. The right of our loved ones to choose the employment option that best meets their needs must be respected. To repeal 14(c) and deny our family members that choice would violate their civil rights.
 
Therefore, please submit your comment to the US Commission on Civil Rights 
BY DECEMBER 15.
 
Comments can be emailed to:    [email protected]

Fact Sheet on Subminimum Wages for People with Disabilities

VOR's Jill Barker has provided an informative fact sheet on her website,
The DD News Blog

The US Department of Labor issued a Fact Sheet on “The Employment of Workers with Disabilities at Subminimum Wages” in 2008. It still applies, even as discussion of changes to the law is currently a hot topic.

Special wage certificates allow people with more severe cognitive and other disabilities to work at their own pace in skill development centers (sheltered workshops, usually in community settings) and receive pay adjusted to their abilities and how fast they work. Special wages are below the federal minimum wage and are a way to subsidize employers who provide jobs to people who would otherwise not be able to compete for employment.

The facts show, that working in a sheltered workshop or other non-competitive employment situation is not an arbitrary decision nor is it compulsory: “The fact that a worker may have a disability is not in and of itself sufficient to warrant the payment of a subminimum wage.”

Wages must be commensurate with the individuals abilities and productivity: “All subminimum wages must be reviewed and adjusted, if appropriate, at periodic intervals. At a minimum, the productivity of hourly paid workers must be reevaluated every six months and a new prevailing wage survey must be conducted at least every twelve months;” “…any worker with a disability paid at subminimum wages, or his/her parent or guardian, may petition the Administrator of the Wage and Hour Division for a review of their special wage rates by a Department of Labor Administrative Law Judge.”

State News:
New York - Death And Deals: Children With Special Needs Suffer, Private Equity Profits
By Sabrina Willmer, Bloomberg News via Disability Scoop, December 6, 2019

One nurse slept on the job. Another didn’t show up at all. A third scalded a child so badly that her skin peeled.Still another failed to check on a toddler who depended on a breathing tube. By the time the nurse returned, the child’s hands and feet were purple.

The little girl was dead.

All of these incidents have something in common: the dark side of private equity.

The nurses worked for Aveanna Healthcare LLC, a company assembled through a series of corporate takeovers, with two goals in mind. One is to provide quality at-home nursing for those who are sick or have disabilities, mostly children who may need near around-the-clock care to stay alive. The other is to maximize profit.

The outcomes, at times, have been devastating. Under the control of two prominent private equity firms, Bain Capital LP and J.H. Whitney Capital Partners LLC, Aveanna has left a trail of injury and death in some of the biggest states where it does business, Bloomberg News found.

More than 1,000 pages of state health documents, many released under public-records laws, show Aveanna has had a disproportionate number of safety violations.

At least seven children have died in Texas, Pennsylvania and Colorado. In these fatalities, reported over the past year, health officials found that Aveanna’s nurses failed to check vital signs, follow emergency procedures, appear for their shifts or give the proper doses of medicine. Aveanna says injuries and deaths on its watch, while unacceptable, are rare, and that it cares for more seriously ill children than other companies.

But internal company documents reveal financial incentives that favor corporate growth and cost-cutting over clinical care. In interviews, more than a dozen former Aveanna employees described how the pressure to meet financial goals jeopardized the quality of care for children.
Despite misgivings, some families say they have little choice but to keep hiring Aveanna’s nurses. The company is so big that it dominates children’s at-home care. Now, it’s about to buy one of its largest rivals.

“It is a game they play with our kids’ lives,” said Lynda Leising, who uses Aveanna nurses to care for her six-year-old son, Noah, who has a condition that combines Down syndrome, autism and Tourette’s. “And it is really about how they can make more money.”

What is happening at Aveanna illustrates how private equity is penetrating every corner of U.S. health care and, in the process, transforming American medicine. Bain Capital, whose co-founder is Utah Republican Senator Mitt Romney, has, or had, investments in everything from mental health management to dialysis centers to methadone clinics.

Wall Street is aggressively remaking a health care system once the domain of independent-minded doctors and nurses. In 2018 alone, private equity firms made $63.1 billion in medical deals, up about 50 percent from the year before.

Minnesota - Hidden In The Shadows
By Chris Serres and Glenn Howat, The Star-Tribune, December 6, 2019
In Minnesota, the bulk of funding for people with disabilities goes to group homes. These facilities often fail to deliver promised care, isolating residents from community.

Tim Healy calls the time he spent in a Twin Cities group home “my lost years.’’

Healy, 32, has an intellectual disability and needs help with basic living tasks. But for 12 years at a group home in New Hope, he got little of that. He describes a facility so short-staffed that residents were ignored for hours at a time and rarely allowed to venture outside. He says it was a period of numbing boredom, loneliness and doubt.

Today, living with his mother in West St. Paul, Healy feels reborn. Cradling a guitar, he describes his plans to get married, find a job, start a rock band and take sky diving lessons. “It’s like I was a prisoner,’’ he said. “I’ve been away too long.”

Healy and his family remain furious at state and county officials who administer aid to Minnesotans with disabilities. They say no one told them that Minnesota’s Medicaid program pays for the kind of services that would enable Healy to live at home and independently.

“Tim could have flourished on his own, but we were led to believe that a group home was the only option,” said his mother, Brenda Olson.
Healy’s plight is one example of the way Minnesota is forsaking a legal obligation to promote independence among people with disabilities. Rather than helping develop care plans that would allow them to live in their own homes or apartments, counties across the state continue to steer thousands of Minnesotans with disabilities into facilities that promote dependency and isolation.

State spending on group homes, for Minnesotans with disabilities who receive a coveted form of assistance known as a Medicaid “waiver,” now totals about $1.5 billion a year. That represents about two-thirds of total spending on waivers for people with disabilities — and is more than the combined state spending on agriculture, higher education and pollution control.

Despite that huge outlay, records show that Minnesota rarely conducts inspections or on-site audits to ensure that group homes are delivering the individualized care and daily activities they promise.

Ohio - Township Board OKs Plan for Once-Shuttered Developmental Facility
By Justin Dennis, Mahoning Matters, December 12, 2019
A plan to re-open the shuttered Youngstown Developmental Center facility in Mineral Ridge to provide centrally located services for mentally ill or developmentally disabled residents progressed Thursday with unanimous approval from the township’s zoning board.

Still to be seen, however, is whether state legislators will produce the $1.5 million from Ohio’s biennial capital budget that county officials and local health provider partners need to fully bring the 35-acre County Line Road campus back online.

During a two-hour meeting, Board of Appeals members put the facility’s proposed conditional use permit — essentially the same it had for 30 years before being closed by the state in 2017 — through its paces. Heads of partnering agencies looking to relocate to the campus — including Meridian HealthCare, Alta Behavioral Healthcare, Compass Family and Community Services and Easter Seals, among many others — fielded questions from board members, as well as a handful of the facility’s Mulberry Run neighbors.
The board ultimately approved the facility’s permit, but on several conditions:

  • The campus must not offer substance abuse or recovery services. Officials stressed Thursday it would not, though it would offer training for recovery workers.
  • The property manager — in this case, the Western Reserve Port Authority — must install 6-foot fencing along the western end of the facility and fill open spaces with evergreen trees to match the surroundings, to insulate the Mulberry Run neighborhood.
  • An advisory board that includes property owners living adjacent to the campus must be created.
  • None of the facility’s neighbors spoke out directly against the proposal, yet some questioned how future property development, increased vehicle traffic or oversight measures for the campus’ live-in residents could impact the neighborhood.

“When those pine trees were small, we could see the residents continually back and forth between the buildings. It was not an unpleasant thing,” said Cheri Manners, who built her Mulberry Run home on abutting property in 1997. “They were wonderful neighbors to have and we hope that would still be the case.

“All those years I lived there [near] YDC, we only had three times a [YDC resident] wandered onto our property,” and center staff were quick to respond, she added. “Since they left, I’ve had to call the police five times because of unsavory activity back there.”

“It was a loss to the community when this facility was taken away by the state,” Duane Piccirilli, executive director of the Mahoning County Mental Health and Recovery Board, said Thursday.

Families of YDC patients were forced to divert to other available centers throughout the state, “which really hurt the whole rehabilitation process,” he said. “A lot of our citizens desperately need this housing.”

Virginia - Storied History of Central Virginia Training Center to Come to a Close in 2020
By Carrie J. Sidener, The News & Advance, December 6, 2019
The state institution now known as the Central Virginia Training Center has sat on a hillside overlooking the James River for 118 years.

Established as a home for those suffering from epilepsy, the Madison Heights facility grew into the largest residential institution for people with mental disabilities in the nation and the oldest in Virginia.
Now it’s closing.

By June, this storied institution that played a pivotal role in history and in the lives of tens of thousands of Virginians will be empty save for a small contingent of staff.
CVTC’s slow but inevitable closure comes as a result of a 2012 settlement with the U.S. Department of Justice, after it deemed residents of Virginia’s training centers were harmed in large institutional settings.

Only 33 patients remained on the 350-acre campus in late October, down from an all-time high of almost 3,700, CVTC director Dick Roberts said.
Once a major employer in the region, its staff is leaving by the day.

Of the 90-some buildings on campus, 10 still serve patients and staff. Most of the remainder sit vacant, decaying under the forces of time and neglect.

Tennessee Becomes New Front in Fight to Overhaul Medicaid
By Nathaniel Weixel, The Hill, December 1, 2019
Tennessee is the latest battleground for the Trump administration as it tries to implement drastic, conservative changes to Medicaid. 

While some red states have begun pushing back from imposing work requirements on Medicaid beneficiaries in the face of lawsuits, Tennessee is forging ahead with an even more controversial proposal.

“Work requirements were a blunt instrument swung too widely,” said Tom Miller, a health policy expert at the conservative American Enterprise Institute.

“There’s an aggressive point of view in CMS [Centers for Medicare and Medicaid Services] leadership which wants to do things with Medicaid. One of them was work requirements, but it hasn’t gone so well," Miller continued. "Another way is to do some sort of ... block grants.”

The administration is currently reviewing a plan from Tennessee to convert Medicaid into a block grant, a proposal that, if approved, could be the first in the nation. 
Imposing block grants in Medicaid has long been a major conservative goal, and with time running down in President Trump’s first term, the administration is facing pressure to approve a plan advocates argue may not be legal without congressional approval.  

Congress already rejected block grants when the GOP’s ObamaCare repeal bill failed in 2017. Allowing states to impose those same changes by statutory waiver would be extremely controversial and have widespread implications about the use of executive power.

In a recent speech, CMS Administrator Seema Verma hinted that the administration was ready to begin approving proposals like the one in Tennessee.

Lawmakers Mount a Challenge as Pennsylvania Shuts State-Run Facilities for Intellectually Disabled
By Harold Brubaker, The Philadelphia Inquirer, December 11, 2019
For decades, Pennsylvania has been following a national trend by closing its state-run institutions where an ever-smaller number people with intellectual disabilities spend their lives.

But when the Wolf administration in August announced a three-year plan to close two of its four remaining institutions -- Polk, in Venango County, and White Haven, in Luzerne County -- the backlash from families of residents, employees, and politicians was sharp and could thwart the state’s effort.
The Pennsylvania House of Representatives is expected next week to take up a bill, already passed in the Senate, that would block the closures — until all 13,000 intellectually disabled individuals on the state’s Medicaid waiting list for services receive services that help them live in the community.

The bill would effectively prevent the state from ever closing the remaining four institutions.

Nice News Stories of the Week:
Arkansas - Polar Express Boarding for Two Days at CHDC
By Marisa Hicks, The Log Cabin Democrat, December 4, 2019
Community leaders and Arkansas Department of Human Services representatives came together Monday to tour the Polar Express route and judge the annual display competition.

Conway Human Development Center Superintendent Sarah Murphy has said the Polar Express event, which is now in its fifth year, is both a campus and community favorite.

The event showcases the joys of the Christmas season and allows the facility to welcome area residents to the CHDC grounds to take a ride on it’s historic train and take part in holiday activities.
“At the Polar Express, the Christmas Spirit is in the area,” Murphy told the Log Cabin Democrat. “There are lots of smiles and laughter.”

Maine - A Moment of Light and Love Amid Maine’s Direct Care Crisis
By Leighann Gillis, The Beacon, December 4, 2019
The care crisis rages on in the state of Maine, but once in a while, there is a bright spot. For me, that ray of sunshine came when the disabled young woman I work with and I attended a meeting of the Long Term Direct Care Workforce Commission.This commission has made the effort to begin each meeting with an agenda item called “Consumer Voice,” to hear from individuals receiving care, and to close each meeting with a period of public comment.

I had attended the previous three meetings, on my own time, to speak during the public comment period about the incredibly unfair level of financial sacrifice needed to be a direct care worker, about how vital a wage increase is to creating and sustaining a viable workforce, and about how much we need a universal system of care to supplement our deeply broken and fractured current system of limited care afforded only to a few.

Before the fourth meeting on Nov. 14, I knew the commission needed to be able to meet and interact with an individual with developmental disabilities. It’s also necessary to hear from the parents of members of this community, and to discuss the experience from a worker perspective, but it’s far more important to have a representative in the room.

Ahead of the meeting, I reached out to the commission and asked if the woman I work with and I could provide the “Consumer Voice,” and they welcomed us.

During the previous meetings, I wore a straight face, with which I shared hard and ugly truths about care and being a care worker in Maine. This time, I got to smile. This time, I was able to share with this commission the light and joy in my life. They all got a brief glimpse into why I do this advocacy work with such passion and commitment, why I research, write, attend legislative meetings, provide public testimony and comment. The commission saw the smile that makes me smile — and it made all of them smile too.
This commission was able to see something very rare within our current system: what it looks like when a disabled person is able to have consistency in their care and life. She and I have been granted the opportunity to show our complete and authentic selves to each other, and build a relationship on a foundation of trust, understanding, and love. With provider agencies with employee turnover rates of 50 percent or higher, a relationship like ours is becoming more and more difficult to find.

Why is something so important and special so rare? Unfortunately, in order to talk about these positive experiences, we also need to discuss the negatives that got us here. The main reasons are shockingly basic: legislative inattention, inaction, and partisan divide. For decades, self advocates, parents, allies, workers and others throughout the state have been contacting legislators and media outlets to share their experiences. Our advocacy for a better system of care is nothing new, and neither is being ignored by rule makers. The legislature let the funding mechanism behind care giver wages stagnate for 10 years before a temporary emergency measure to raise wages was passed. Keep in mind, the community of care givers and receivers didn’t stop advocating during those 10 years.

On top of that, there was an eight-year period of dramatic program cuts that removed previously allotted hours of care from in-home programs, completely gutted programs leaving thousands with zero support, and made it harder to access care in general.

Here we are now, trying to catch up and serve the folks who were promised care. Beyond that, we still have multiple wait lists with thousands of Mainers to tackle, but we have no infrastructure or plan in place to do that.

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What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
VOR Bill Watch:
Click on blue link to view information about the bill

VOR OPPOSES:

H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 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. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


VOR SUPPORTS:

H.R. 2417 - 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).

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