October 11, 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:
Editorial: Institutions Are Bad - Agreed?

As I look through the news articles that come across my desk each week, each day, it's easy to see a common premise that, no matter how bad services may be in the community, how many people remain un-served and under-served, how tragic a death or multiple deaths may be, everyone appears to agree that, "at least we are getting rid of institutions." Whenever services are denied to people, when their needs are being unmet, when they are subjected to abuse or neglect, well, it could have been worse - " They could have had to live in an institution."

The news media, lawmakers, government agencies, advocates, self-advocates, and even members of the general public who shun people with disabilities all agree: Institutions are bad.

In fact, it would seem as though the only people who refuse to accept this rather obvious presumption are the people whose family members and loved ones have prospered in these institutions. Just because people are receiving high quality care from trained and loving staff, that their physical, mental, dietary, and behavioral needs are being met, and that incidents of abuse and neglect are fewer and are fully reported and investigated... ...I mean, these people are receiving all that care in an Institution.

Don't these folks realize that institutions are Relics of the Dark Ages?

Well, VOR members appear not to be drinking that Kool-Aid, or as Sue Jennings puts it, they tried to drink it but it kept coming back up. For the most part, people with loved ones in institutions are grateful and thankful for that level of care. Our only worry about institutional care is that some well-meaning but misinformed outsider might try to take it away.

VOR beleives that no one size fits all. We support funding, developing, and improving all levels of care, all opportunities for employment, and all services that are designed to meet the needs of our loved ones with I/DD.
VOR's Abuse and Neglect Document

For over two decades, VOR has been collecting articles on critical incidents involving abuse and neglect in community settings and the failures of state and federal systems to provide the necessary protections for people with intellectual and developmental disabilities.

The Abuse and Neglect Document has been recently updated and may be found on our website at www.vor.net

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We have added two new videos to our YouTube page this week.

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National News:
Study Finds Gaps In Medicaid Waivers
By Michelle Diament, Disability scoop, October 7, 2019

The services provided through Medicaid waivers to children with the most severe disabilities vary wildly from state to state, researchers say, leaving many families to pick up the pieces.

Just 1 percent of children are considered medically complex, but spending on care for this group through Medicaid waivers tops $48 billion annually. However, a new analysis looking at 142 waivers from 45 states finds significant differences in how this money is spent.

More than 80 percent of waivers cover respite care services, but only 8 percent include educational programs to teach families how to properly care for their children, according to findings published recently in the journal Health Affairs.

Slightly more than half of waivers offer case management or counseling services, the study
found. But, less than a third include physical, occupational, speech or vision therapy or pharmaceutical, dietary or dental services.

“It’s not just how much we’re spending to support these children and families,” said Jessica Keim-Malpass, a nursing professor at the University of Virginia who led the study. “It’s how well we’re supporting these children and families. By most accounts, we’re not doing it well.”

Opinion: The State of IDEA Special Education Funding Shows That Lawmakers Don’t Prioritize Kids
By Lizzie Francis, Fatherly, October 7, 2019
n 1975, then-President Gerald Ford signed the Education for All Handicapped Children Act, which was later tweaked and rebranded as Individuals with Disabilities Education Act. IDEA, as it came to be known, is a formula grant of several parts (A, B, C, and D) that makes funding available for states to provide a good education to children with disabilities, and funds the special education programs those kids require. In the authorization bill, it was stated that the federal government would provide about 40 percent of the funding for the program and each state would need to come up with the next 60 percent of said funding. 

As it stands, IDEA funding is at its lowest ever recorded. This is a disgrace. 

IDEA, for all of its benefits, has actually never been fully funded since its inception. That’s because there’s a difference between what’s “authorized” and what’s “appropriated.” The bill — which was reauthorized in 2004 and amended through the Every Student Succeeds Act in 2015 — provides the formula for full funding, a calculation based on how many students live in a given state, among other factors.
Each state uses their own formula. Today, IDEA serves over six million kids across the country — and was only funded at around $12 billion in 2017, amounting to some 14.6 percent of the cost being picked up by the federal government, a far cry from their 40 percent commitment. Because of this, states are left to make do however they can.

What’s appropriated, on the other hand, is what’s given to the program every year in the annual budgetary process. That means that while other programs like Social Security and Medicaid, which are mandatory from the budget perspective and automatically grow every year in real dollars, IDEA languishes as part of the ‘discretionary’ funds bucket. There, it is limited by budget caps and fighting for money in a small pie of funds. (Other programs that live in this bucket include Temporary Assistance for Needy Families [TANF], Supplemental Nutritional Assistance Program (SNAP), and actually, much of the federal education budget. Not a single dollar of the K-12 budget came from mandatory funds for the Fiscal Year of 2019; all of it was annually appropriated. 

Relias Survey of Direct Support Professionals Reveals Disparity Between Employee Expectations and Employment Realities of Industry
Cision PR Newswire, October 9, 2019

Relias, a trusted partner to more than 10,000 healthcare organizations around the world and across the continuum of care, has released the results of a primary research study of Direct Support Professionals (DSP) in the intellectual/developmental disabilities (IDD) services field conducted in July of this year. The results showcase key staffing issues around hiring and training, as well as the vital role supervisors play in staff retention in an industry where, according to the President's Committee for People with Intellectual Disabilities' 2017 report, the national cost of replacing DSPs (identifying, hiring, on-boarding, training, etc.) was estimated to be $2.3 billion in 2015.

"The responses to our survey have brought the challenges faced by IDD services providers into the spotlight," said Jim Triandiflou, CEO of Relias. "By taking advantage of available tools and technologies, the likelihood of hiring and retaining quality DSPs rises, and the quality of care and financial outcomes improve."

With more than 80% of respondents saying they believe they make a difference in the lives of the people they support, it's clear that the role of the DSP can be rewarding.  Yet, the above-cited Report to the President notes that  the national average annual turnover rate of DSPs is 45%. Given this turnover rate, the field needs nearly 575,000 new DSPs every year to maintain the current levels of service -- highlighting the importance of hiring the right individuals. The use of personnel assessments can be of critical use in the hiring process, making sure that candidates are a true fit for the role.

Perhaps most interestingly, of those DSPs who said they plan to leave their current job, more than 50% felt they needed more initial training regarding the conditions/disorders of the people they were asked to support, suggesting a correlation between onboarding/training and staff retention exists. Respondents also cited "positive behavior supports/how to deal with behavior problems" as another area where additional training could make a difference.

Cost of Living Adjustment (Only): SSI, Social Security Payments to Rise In 2020
By Shaun Heasley, Disability Scoop, October 11, 2019

People with disabilities who receive Social Security or Supplemental Security Income benefits will get more money next year. The Social Security Administration said Thursday that benefits will rise 1.6 percent for 2020. The increase is due to an automatic cost-of-living adjustment, or COLA, that’s mandated by law and is tied to inflation. It’s triggered when the Consumer Price Index from the U.S. Department of Labor’s Bureau of Labor Statistics goes up.

The change will take effect beginning Dec. 31 for over 8 million SSI beneficiaries across the country and in January 2020 for more than 63 million Americans receiving Social Security.

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A Word on an Old Friend of VOR :
U.S. District Judge Holmes Wrapping Up 15-year Career
By Linda Satter, The Arkansas Democrat Gazette, September 30, 2019
It may seem like an ordinary Monday to anyone passing by the Richard Sheppard Arnold United States Courthouse in downtown Little Rock today.
But for those inside, it's a day that marks the end of an era.

The trial that most stands out in his mind is a six-week non-jury trial that began in September 2010 as a result of a lawsuit the U.S. Department of Justice filed against the state over the care of residents of the Conway Human Development Center. The case was so complex and lengthy that Holmes presided over sessions on two Saturdays and a holiday.

The department alleged that the state had fallen below federal standards of care and was violating the civil rights of residents by favoring institutionalization of developmentally disabled adults and children, instead of helping them live in the least restrictive environment possible. The state, and many parents and guardians of the residents, countered that the residents were well cared-for and said they feared the lawsuit would cause the center to close its doors, leaving their loved ones without a safe place to live.

Eight months after testimony ended, Holmes issued his longest ruling ever, based on the testimony and subsequent voluminous post-trial filings.
In the 85-page opinion, he ruled in favor of the state, saying the Justice Department failed to prove that the center violated the rights of its roughly 500 residents. The state hailed the ruling as "a huge victory."

But despite the weighty matters that came before him, Holmes also demonstrated his witty side on occasion, such as his remarks when he closed a third week of testimony in the Conway case.

He solemnly told the attorneys, "I wanted to see if I'm understanding what you presented this week correctly," then read aloud from his notes, using the acronym-heavy language that the parties had been using prolifically.

"CHDC is an ICFMR, not an LEA, regulated by CMS, DDS and ADE, required to provide FAPE in the LRE," he began. By the time he was finished, attorneys and spectators throughout the courtroom were laughing.

A Word from Our Friends at Together For Choice :
Advocacy Works: Illinois Congressman Brad Schneider Supports TFC’s Request to Preserve Section 14(c)
By Scott Mendel, Together For Choice, September 26, 2019

The fight to protect employment opportunities for individuals with intellectual and developmental disabilities (I/DD) is perpetual. Together for Choice recently found an ally in U.S. Congressman Brad Schneider , a representative from Illinois who understands the value of work under the 14(c) certificate for people with I/DD. Rep. Schneider recently advocated on behalf of protecting 14(c) in committee discussions on the Raise the Wage Act, demonstrating the value of grassroots advocacy for protecting employment opportunities for people with I/DD.

State News:
For I/DD, The Action Is At The State Level
By Monica Oss, Open Minds, October 7, 2019

OPEN MINDS offers a brief overview of some programs and initiatives being enacted in several states, including Indiana, Illinois, New Mexico, Tennessee, Missouri, New Jersey, and New York.

New York - Opinion: State Cuts Threaten Medicaid Home Care Program
By Amy Neff Roth, The Observer-Dispatch via the Olean Times Herald, October 6, 2019
Gail Steen has a job and an apartment — an independent life she’s carved out after a car-moose accident left her with quadriplegia in 1997.
Much of the Clinton resident’s independence comes through the state’s Consumer Directed Personal Assistance Program, which lets people with disabilities who are on Medicaid hire, train and set the schedule for their own personal assistants.

“I require total care,” Steen said. “I can’t even feed myself. So I rely heavily on my aides and this program. Without it, I really don’t know what I would do. They get me up, get me breakfast and out the door so I can make it to work every day.”

Without the program, Steen said she’s “not at all” confident she could remain in her home of 20 years.

The possibility looms as the New York State Department of Health wants to cut the
administrative costs it pays for the program’s fiscal intermediaries, who pay the personal assistants.

Advocates fear those cuts, worth $150 million in a combination of state and federal funds, could sink the program.

The program serves about 90,000 people, according to the state, and pays for about 135,000 personal assistants, according to the Consumer Directed Personal Assistance Association of New York State.

The cuts for fee-for-service Medicaid participants went into effect on Sept. 1. If they go into effect for participants enrolled with Medicaid managed care companies, they would take effect retroactively.

Illinois - School Districts Reportedly Refusing Kids With Severe Disabilities
by Zak Koeske, The Daily Southtown via Disability Scoop, October 9, 2019

Officials of a private facility in Harvey that houses and educates children with severe disabilities will soon be forced to choose between laying off staff or discontinuing education to 11 students if they can’t find a district willing to enroll them, according to a lawsuit filed late last month.

The Children’s Habilitation Center, which provides education and other services to students with intellectual disabilities, orthopedic impairments, traumatic brain injuries and other severe mental and physical limitations, claimed several Illinois school districts have refused to enroll their students, in violation of state and federal law.

“This case is about how several Illinois School Districts have put their desire to save money over their legal obligation to provide a free and appropriate public education to 11 severely disabled and medically fragile children who live and go to school at (Children’s Habilitation Center),” the suit said. “Despite every party acknowledging that the children are entitled to a free and appropriate education under the law and that some Illinois school district must enroll them, each School District is passing the buck, and the children remain without a home district and without the legally required public funding for their schooling.”

Virginia - Parents Sue Fairfax Schools, Allege Improper Seclusion and Restraint of Students with Disabilities
By Debbie Truong, The Washington Post, October 8, 2019
Parents and disability rights groups are suing the largest school system in Virginia, alleging students with disabilities experience discrimination, trauma and physical harm through the excessive and improper use of seclusion and restraint in Fairfax County Public Schools.

The parents, Jennifer Tidd, Pamela Ononiwu and Ashley Thomas, are accusing the 189,000-student school system of using the practices to “silence, detain, segregate, and punish students with disabilities,” according to the lawsuit filed Tuesday in the U.S. District Court for the Eastern District of Virginia.

Fairfax school officials said they have completed a thorough and independent review of seclusion and restraint guidelines, and added staff, increased training and appointed an ombudsman for special education. The school system also created a task force to look at best practices for restraint and seclusion. The parents who filed the lawsuit lambasted that task force as a “public relations ploy.”

Tidd’s son was secluded on at least 745 occasions and excluded from class several hundred more times over seven years, according to court papers. Tidd said she did not receive notice or documentation of the instances of seclusion within 24 hours, despite school system guidelines that say she should have been notified in that time frame.

“We have really no way of knowing what the total is,” Tidd said. “Our trust has been breached.”

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]
Nursing Home News:
In addition to administering ICFs and Home and Community Based Waiver Settings, the Center for Medicare and Medicaid Services (CMS) administers Nursing Homes and Skilled Nursing Facilities. This week, three articles appeared that may be of interest to our readers:

1. CMS Passes Final Rule Reducing Regulations Burdensome on Health Care Providers
The National Law Review, October 7, 2019

On September 26, 2019, CMS passed the Omnibus Burden Reduction (Conditions of Participation)Final Rule (Final Rule), with the goal of removing CMS regulations that have become extraneous or burdensome on health care providers, allowing providers to increase and improve focus on patients. CMS estimates savings resulting from the Final Rule to be 4.4 million hours of time, and $800 million annually. The Final Rule was published on September 30, 2019, and goes into effect sixty days thereafter.

2. Proposed Nursing Home Regulations Could Put Residents at Risk
By Richard Mollot and Dara Valanejad, The American Bar Association, September 17, 2019

Nursing home residents are some of the most vulnerable individuals in the United States. Given that about half of all older adults will need nursing home care at some point in their lives,1 the quality and safety of our nursing homes are matters of importance to virtually every family in the United States. Sadly, serious problems such as insufficient staffing, abuse, and neglect are persistent and widespread.

In July, more than a year after the nursing home industry asked for relief from what it called regulatory burdens, the Centers for Medicare and Medicaid Services (CMS) issued a proposed rule that would roll back many of the minimum standards of care in the federal regulations known as the Requirements of Participation.

The proposed rule rolls back requirements related to:
  • • Keeping residents informed about their primary care professionals
  • • Responding to resident grievances
  • • Protecting residents from inappropriate transfer or discharge
  • • Bed rail safety
  • • Posting of care staff on duty
  • • Behavioral health services
  • • Reducing antipsychotic drugging
  • • Food and nutrition management
  • • Facility assessments
  • • Quality assurance and performance improvement programs
  • • Infection control
  • • Compliance and ethics programs
  • • The physical environment of residents’ rooms
  • • Informal dispute resolutions
  • • Civil money penalties for substandard care, abuse, and neglect

3. CMS to Label Cited Nursing Homes with ‘Do Not Proceed’ Icon on Nursing Home Compare Website
By Danielle Brown, McKnights Long-Term Care News, October 7, 2019

Federal officials will soon affix a bright red “stop” hand icon next to facilities that have received recent abuse citations, the Centers for Medicare & Medicaid Services announced Monday afternoon.

CMS unveiled the labeling plans as part of an unfolding five-pillar plan that includes improving transparency for consumers. Starting Oct. 23, the “Do not proceed” symbol will be placed next to facilities that have been cited for abuse, neglect or exploitation. Authorities call the open-palm display in a red circle “a consumer alert icon.”

It will appear next to facilities that have been given a citation for abuse that led to the harm of a resident within the past year or cited for abuse that could have potentially led to resident harm in each of the previous two years.

Mark Parkinson, president and CEO of the American Health Care Association, said the plan should be halted until there is more clarity.

“We support transparency so that potential residents and their families can make an informed decision on care,” Parkinson said in a statement. “We appreciate CMS’ efforts to improve Nursing Home Compare but as we have previously suggested, we believe that CMS should create a standard and rational definition of both abuse and neglect and then report them separately. That would help provide consumers with the information that they need.” 

“In addition, CMS should add customer satisfaction to Nursing Home Compare because that is the best way for consumers to select facilities. It’s surprising that we can look for customer reviews of restaurants and hotels that we select, but that information isn’t available for nursing homes. We should have a way to let families and residents think of the facilities they are considering,” Parkinson added.

VOR Bill Watch:
Click on blue link to view information about the bill


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.


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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