November 22, 2019
NOTE: This week's newsletter is LONG.
A lot happened this week across the country.
Please sit back and take your time.
There's plenty of important news to read.
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 And Me
By Rita Winkeler, Member of the VOR Board of Directors

VOR has been part of my life for decades. It became a vital part of my advocacy for those with disabilities in the past eight years.
Eight years ago the large state ICF, Murray Developmental Center, where our profoundly intellectually disabled, son Mark resides was targeted for closure. Our parent/family group, the Murray Parents’ Association led the valiant effort to keep Murray Center open.

We succeeded, and during the closure attempt I learned that VOR was always there to answer our questions, give us guidance, and support us during this stressful time.

Through VOR I have connected with guardians from every state, and feel like besides the help I have received from VOR, I have been able to help others who are seeking support and knowledge as they fight for safe, quality care for their loved one with disabilities.

When you sit down with family for Thanksgiving this year, please remember to give thanks to VOR.

JItty, Rita, and Mark Winkeler
Thank you for your donation!

Opinion: Individuals with Intellectual Disabilities Need a Choice of Services
By Tine Hansen-Turton and Brian Valdez, Philadelphia Inquirer, November 20, 2019
Today, providers who serve persons with intellectual and developmental disabilities (I/DD) have the privilege of caring for thousands of children and adults with varying levels of disability, including autism, brain injury and other complex behavioral and medical needs. But 40 years ago, these individuals were isolated and effectively hidden away from society. Thanks to advancements like the Americans with Disabilities Act and the U.S. Supreme Court’s Olmstead Decision of 1999, those with I/DD now enjoy greater freedoms and more opportunities.

The driving force behind both these reforms is the idea that every American, regardless of disability, should have the right to decide how they want to live, work, and spend their time. Everyone agrees the old policy of forcing people into institutions was wrong and discriminatory. Today, there is a trend toward greater community integration, and in fact, living in the community is often a requirement for drawing down federal funding.

While these policies may be well-intentioned, many still fail to respect people’s basic right to choose where they live and work. For example, we are seeing rules that unnecessarily restrict the number of individuals with I/DD who can live in the same building or community. There are other rules intended to defund sheltered workshops, even though many people with I/DD enjoy these jobs and have held them for a long time. States have even gone as far as to dictate the percentage of
time persons with I/DD must spend outside their home and whom they can spend that time with. Is this any less discriminatory? Doesn’t this also violate the principles Justice Ruth Bader Ginsberg laid down in Olmstead?

Seniors often choose to live in planned developments or over 55 communities with other older adults. Imagine what would happen if the government told these people, “there are too many seniors living in this building. You have to move.” Sounds crazy, right? But, this is exactly what states are saying to individuals with I/DD. No other segment of society is treated in such a way, and more importantly, no other group would tolerate these types of restrictions.
Our policy approach needs to be flexible enough to accommodate the immense diversity within the I/DD population. There is no one-size-fits-all solution to their needs. The best way to preserve choice is to honor the decisions made by those with I/DD, and for those who lack the mental capacity to choose, we must respect the decisions made by their families and caregivers. We believe this is what the ADA and the Olmstead decision intended, and this is what we stand for.

Ohioans Can Comment on Developmental Disabilities Class-Action
By Rita Price, The Columbus Dispatch, November 17, 2019
The public still has time to comment on a proposed settlement agreement that would end a three-year legal fight over community-based services for Ohioans with developmental disabilities. Filed in 2016, the federal lawsuit is still drawing fire from families who say it threatens funding for the residential centers where their loved ones reside.

A three-year legal battle over how and where Ohioans with developmental disabilities make their homes is drawing to a close, but the public still can submit comments before the proposed settlement agreement becomes final.

Larry Koebel plans to do just that, telling a federal judge in U.S. District Court in Columbus that he worries the proposal to end the class-action lawsuit against the state puts his son, Doug, at risk.

Doug is 48 and has the cognitive ability of a 3-year-old. He has long resided in an “intermediate care facility,” or ICF, with around-the-clock staff, a private suite and high-quality services to meet his complex needs, Koebel said.

Koebel thinks future funding for ICFs could be threatened if the state runs short of money after fulfilling promises made in the settlement.
According to the proposed agreement, the Ohio Department of Developmental Disabilities will significantly expand access to the Medicaid-funded waivers that pay for community-based services so that more people have the option of living in houses and apartments rather than ICFs.
“I totally support anything that helps a person who wants or needs a better living environment,” Koebel said. “My concern is, ‘Where will this money come from?’”

The Gahanna resident said he and other parents wonder whether “that money could come from funding that goes to ICFs. Eventually, they get financially starved, beds disappear and facilities close.”
Disability Rights Ohio and other advocates for people with developmental disabilities sued the state in 2016, arguing that Ohio was violating the federal Americans with Disabilities Act by operating a system that makes it difficult or impossible for people to get the support and services they need to live and work in their communities instead of institutions. Disability Rights said at the time that more than 2,000 Ohioans wanted to leave an ICF but faced a years-long wait for one of the Medicaid waivers that helps pay for noninstitutional care.

“What the public should know is that when given the option of community settings or an intermediate care facility for individuals with intellectual disability, ICF residents overwhelmingly chose to stay in their ICF,” said Caroline Lahrmann, whose adult twins have profound disabilities and reside in an ICF.

Disability Rights has said it is not advocating for the closure of larger residential centers or sheltered workshops, but that no one should feel stuck.
“ICFs are absolutely a part of our system, and the department’s fully committed to maintaining that option,” said Jeremiah Wagner, a spokesman for the state Department of Developmental Disabilities. “There’s more money being invested across the whole system to an array of services. I don’t think anyone’s being squeezed.”
Koebel said he’ll suggest that the court include language in the final settlement that preserves funding for ICFs as long as the agreement is in effect.

U.S. Department of Health & Human Services:
2019 Interagency Autism Coordinating Committee Call for Nominations Announcement

The Office of the Secretary of the Department of Health and Human Services (HHS) is seeking nominations of individuals to serve as non-federal public members on the Interagency Autism Coordinating Committee (IACC). Nominations will be accepted between Tuesday, November 19, 2019 and Friday, January 24, 2020.

As specified in the Combating Autism Act of 2006 (Public Law 109-416) and reauthorized by the Autism Collaboration, Accountability, Research, Education and Support Act of 2019 (Public Law 116-60). The Office of the Secretary has directed the Office of Autism Research Coordination (OARC) of the National Institute of Mental Health, National Institutes of Health to assist the Department in conducting an open nomination process. Appointments of non-federal public members to the committee shall be made by the Secretary of Health and Human Services.

State News:
New York - Second Audit Finds NY Facilities are Not Properly Reporting Abuse, Neglect
State comptroller reports OPWDD is not fully complying with Jonathan's Law
By Cayla Harris, Times Union, November 18, 2019
Four months after an audit found that facilities run by the state Office of Mental Health are not properly notifying family members of abuse and neglect within their walls, a second audit released Monday said that the Office for People With Developmental Disabilities also faces compliance issues.The new audit released by the state comptroller's office reports that OPWDD has not enacted policies to ensure that facilities are in compliance with Jonathan's Law, enacted in 2007. The law increases families' ability to access records related to incidents of abuse or neglect, and it also requires centers to disclose those incidents to family members within 24 hours after they are reported.

The law was named for 13-year-old Jonathan Carey, who died in 2007 after he was crushed to death by a caretaker at the now-closed O.D. Heck facility in Niskayuna. The notification requirements apply to facilities "operated, licensed or certified by" OPWDD, OMH or the Office of Alcoholism and Substance Abuse Services.

Auditors reviewed records for 295 incidents at six facilities overseen by OPWDD between April 2015 and last spring, and found that in 11 percent of cases, facilities could not provide evidence that they notified family members or guardians less than a day after an incident was reported. In a similar review of eight OMH facilities released in July, the state comptroller reported that centers could not provide that documentation in 20 percent of the 210 incidents they reviewed, all of which involved children.
“The state must do everything it can to protect individuals with disabilities in their care,” state Comptroller Thomas P. DiNapoli said. “Jonathan’s Law was created to make sure incidents of abuse and neglect are properly addressed and families are told of what occurred. This law can’t work if state agencies aren’t fully complying with the law’s requirements. This is the second state agency my auditors have found that is failing to meet their obligations.”

The law requires that facility directors release a report 10 days after an incident detailing what steps a center took to address the issue, but in 7 percent of incidents reviewed at OPWDD centers, that was not the case. Facilities also did not offer incident records to family members within 21 days of their request for documents, as mandated by law: 20 of 63 records requests evaluated were not distributed on time or at all, according to the audit.

DiNapoli recommended that OPWDD issue new guidance to its facilities detailing "clear and consistent implementation procedures," as auditors found that employees at multiple facilities were confused or did not know about their requirements under Jonathan's Law. He also suggested that the office utilize its online incident reporting database to analyze and address cases where there may be a violation.

Illinois - The Quiet Rooms: Children are being locked away, alone and terrified, in schools across Illinois
By By Jennifer Smith Richards, Jodi S. Cohen and Lakeidra Chavis, The Chicago Tribune with ProPublica Illinois, November 19, 2019
The spaces have gentle names: The reflection room. The cool-down room. The calming room. The quiet room.

But shut inside them, in public schools across the state, children as young as 5 wail for their parents, scream in anger and beg to be let out.
The students, most of them with disabilities, scratch the windows or tear at the padded walls. They throw their bodies against locked doors. They wet their pants. Some children spend hours inside these rooms, missing class time. Through it all, adults stay outside the door, writing down what happens.

In Illinois, it’s legal for school employees to seclude students in a separate space — to put them in “isolated timeout” — if the students pose a safety threat to themselves or others. Yet every school day, workers isolate children for reasons that violate the law, an investigation by the Chicago Tribune and ProPublica Illinois has found.

Children were sent to isolation after refusing to do classwork, for swearing, for spilling milk, for throwing Legos. School employees use isolated timeout for convenience, out of frustration or as punishment, sometimes referring to it as “serving time.”

For this investigation, ProPublica Illinois and the Tribune obtained and analyzed thousands of detailed records that state law requires schools to create whenever they use seclusion. The resulting database documents more than 20,000 incidents from the 2017-18 school year and through early December 2018.

Of those, about 12,000 included enough detail to determine what prompted the timeout. In more than a third of these incidents, school workers documented no safety reason for the seclusion.
Without doubt, many of the children being secluded are challenging. Records show school employees struggling to deal with disruptive, even violent behavior, such as hitting, kicking and biting. Workers say that they have to use seclusion to keep everyone in the classroom safe and that the practice can help children learn how to calm themselves.

But disability advocates, special-education experts and administrators in school systems that have banned seclusion argue that the practice has no therapeutic or educational value, that it can traumatize children — and that there are better alternatives.

No federal law regulates the use of seclusion, and Congress has debated off and on for years whether that should change. Last fall, a bill was introduced that would prohibit seclusion in public schools that receive federal funding. A U.S. House committee held a hearing on the issue in January, but there’s been no movement since.

Nineteen states prohibit secluding children in locked rooms; four of them ban any type of seclusion. But Illinois continues to rely on the practice. The last time the U.S. Department of Education calculated state-level seclusion totals, in 2013-14, Illinois ranked No. 1.

Although state law requires schools to file a detailed report each time they use seclusion, no one is required to read these accounts.

Several school district officials said they had not reviewed seclusion reports from their schools until reporters requested them. The Illinois State Board of Education does not collect any data on schools’ use of isolated timeout and has not updated guidelines since issuing them 20 years ago.

Minnesota - High-Stakes Medicaid Assessments Upend Lives Of Families With Disabilities
By Chris Serres and Glenn Howatt, Star Tribune via Disability Scoop, November 20, 2019
Delores Flynn’s thin hands trembled as she pulled on a pair of sterile surgical gloves. She straddled the bulky frame of her son, Scott, inserted a long plastic tube down his throat and deftly removed the excess fluid blocking his airways.Flynn and her husband, David, both 74, have performed this complicated choreography thousands of times since Scott, 48, suffered a massive brain hemorrhage in 2001 that left him unable to breathe or move on his own.

Yet on this spring afternoon in Roseville, they carried it out with extra purpose. A Ramsey County employee monitored their every move, peppering them with questions, and they had only a few hours to make the case that the family needed help from the county to care for Scott in their home.

Delores had spent months rehearsing for this moment.

“The stress is unbearable,” she said, wiping away tears after the exam. “I have no idea how other families deal with it.”
Each year, tens of thousands of Minnesotans with disabilities and their families undergo this agonizing, high-stakes ritual, known as a comprehensive needs assessment. A stranger with a laptop comes to their home and asks hundreds of questions about the medical needs and care of their loved ones.

Can your daughter feed herself? Is your son aggressive toward others? Can your father use the toilet alone? What does a “bad day” look like? A few careless answers about medications, or a forgotten detail about an emergency room visit, could spell disaster for these families. The right response could bring thousands of dollars in assistance to pay for nursing care, physical therapy and medical equipment; the wrong answer could consign the family to a life of sleep deprivation, medical emergencies and isolation.

Washington - Medicaid Change Creates Shortfall in Clallam, Jefferson and Kitsap Counties
Legislators told it hits hard at mental health funds
By Jesse Major, Peninsula Daily News, November 17, 2019
A change in how Medicaid funds are disbursed has created a $1.5 million shortfall in Clallam, Jefferson and Kitsap counties for crisis and diversion programs that help people with mental health issues.

Officials with Peninsula Behavioral Health and the Salish Behavioral Health Organization told state legislators representing the North Olympic Peninsula during a Clallam County Board of Health meeting Thursday that the change prevents some people with severe mental health issues from accessing the help they need.

Stephanie Lewis, regional administrator for the Salish Behavioral Health Behavioral Organization, told state Reps. Steve Tharinger, Mike Chapman and Sen. Kevin Van De Wege — all of the 26th Legislative District — that the transition to “fully integrated managed care” has resulted in a $1.5 million reduction in behavioral health funding in the region.

“This systemic change to integrated managed care is only being implemented for Medicaid enrollees, whereas previously behavioral health services in our state were managed through behavioral health organizations and Medicaid enrollees and low-income uninsured individuals were all managed through behavioral health organizations,” she said.
“That leaves a notable gap for the non-Medicaid and uninsured population.”

This change has resulted in an 80 percent reduction in funding for mental health residential treatment, such as PBH’s Arlene Engel House in Port Angeles, for non-Medicaid individuals said PBH Executive Director Wendy Sisk.

Sisk said this becomes a problem because many of the people seen by PBH are covered by Medicare, though Medicare doesn’t pay for many of the services being provided.

At the Arlene Engel House, PBH cares for seven people who are not covered by Medicaid and who became qualified for Medicare because they became disabled early in life.

“We have seven people and we now have funding to serve one,” Sisk said. “These are individuals who, in most states, would live in psychiatric institutions; people with profound schizophrenia who can not take care of their basic health and safety needs on their own.”

North Carolina - Lack of Funding for this Program May Leave Some Adults with Disabilities Out In The Cold
By Casey Toth, News & Advance, Nov. 19, 2019
Dylan Hoyle has successfully lived in his own home since 2017 despite a diagnosis of severe autism, with 24-hour staff support, which will soon be stopped by the local provider agencies who say the Medicaid waiver funding the service is not enough.
Massachusetts - A recap of our cases of abuse and neglect in the DDS system
By Dave Kassel, The COFAR Blog, November 18, 2019

We receive calls on a regular basis from family members and guardians of persons in the Department of Developmental Services system who are dealing with, abuse, neglect, poor care, and related issues.

We always try to help where we can by offering advice and working with the Department of Developmental Services and other agencies and organizations to rectify the situations, and, in some cases, informing the public about the matters through our blogsite and newsletter.

Below are summaries of some of the major cases that have appeared on this blogsite in recent years. We’re happy to say that at least some of these cases were ultimately resolved favorably for the individuals, families, and guardians involved; but these cases are all disturbing signs of a broken system.

Texas - Demand For Special Education Grows In Texas, But Shortage Of School Psychologists Slows Progress
By Laura Isensee, Houston Public Media, November 19, 2019
In the last three years, Fort Bend schools have seen the demand for special education almost double. More teachers and parents are asking for children to be tested for a disability — which district leaders say is a huge step forward since the end of a Texas policy that denied services to tens of thousands of children for over a decade.

The problem is they don’t have enough qualified staff to perform those detailed and technical evaluations, according to Fort Bend Independent School District leaders. In particular, the large suburban district needs more licensed specialists in school psychology, also known as LSSPs.

“It’s a ton of pressure,” says Jennifer Byrne, the district’s assistant director for special education. “I’m constantly thinking about it, at night, in the shower — What else can I do? What can we try differently? Every year we’ve tried something different.”

Here’s what they’ve tried: a $5,000 signing bonus, a retention bonus and shifting some duties to counselors to lighten the workload. Still, Fort Bend has nine vacancies for school psychologists — almost 20% of the department’s staff. That’s why Byrne says they’re growing their own with an aggressive and paid internship program.
It’s not just a problem in Fort Bend ISD, one of the largest districts in the state. It’s a challenge for districts across the state as Texas tries to fix serious problems with special education. In 2018, federal regulators ordered the state to stop capping the number of children who could receive services and to ensure all kids with special needs are identified. 

Already, the Texas Education Agency has seen the number of students tested for special ed services soar by 56%, to 138,000 evaluations in 2018-19.

But no region in Texas has enough licensed school psychologists to meet national staffing recommendations and keep up with that kind of demand.
Statewide, there’s only one licensed school psychologist for about 2,800 students, though national guidelines say there should be about one for every 500-700 students.

Pennsylvania Updates:
Legislation Establishing Moratorium on Proposed Closure of Polk and White Haven State Centers Passes Senate
PA Home Page, November 18, 2019
State Senators John Yudichak (D-14), Michele Brooks (R-50), Scott Hutchinson (R-21) and Lisa Baker (R – 20) announced Monday that the Senate overwhelmingly passed Senate Bill 906, which establishes a moratorium on closing the Polk and White Haven State Centers.

“Senate Bill 906 is a bipartisan bill that gives the people who live at White Haven and Polk State Centers and their families a choice to remain in the place they call home,” Senator John Yudichak said. “The Department of Human Services, without advance notice or a single public hearing, is trying to take away that choice, but today’s action by the Senate represents another step forward in the fight to the save the Centers and give our most vulnerable citizens, their families, and the employees who so lovingly care for these people a voice in this fight to save White Haven and Polk State Centers.”

“This legislation reflects a fundamental respect for the safety and dignity of the frailest of the frail and promises to preserve the only home that many Polk and White Haven residents have ever known, and one that best meets their needs,” Senator Michele Brooks said. “I sincerely thank my colleagues, along with the families, residents, staff, and advocates, who worked so hard to let the voices of the residents be heard.”   
Y“The Department of Human Services (DHS) is seemingly unmoved by the heartfelt appeals from the families of the residents who will be uprooted by the closure of Polk and White Haven State Centers,” Senator Hutchinson said. “That means the Legislature must act to protect these vulnerable individuals. Senate Bill 906 does that. I continue to believe that the best solution would be a total reversal of decision to close the Polk State Center. But at least this moratorium will provide additional time and impose important conditions that will protect the well-being of its residents.”

“Whatever the financial and philosophical motivations of state government, too little consideration has been given to the interests of families, workers, and the communities surrounding the affected institutions,” Senator Baker said. “This bill is intended to make sure Pennsylvania lives up to the legal and moral obligations to the residents of these centers, especially those for whom the centers are the only home they have really known.”

The bill will be considered in the House next.

Who Decides Where Pennsylvanians with Disabilities Should Live?
By John Hirschauer, National Review,
November 18, 2019
Two residential facilities slated for closure serve those who prefer to live there.In August,

Pennsylvania’s Department of Human Services announced its intention to close two large state institutions for individuals with intellectual and developmental disabilities. The department said that closing the Polk and White Haven state centers was necessary to best “honor the inherent value of every person” and ensure that “every Pennsylvanian can live an everyday life.” The implication of the department’s statement was clear: Parents, families, and the residents themselves hold their loved ones’ — or their own — “inherent value” in a lower esteem than does state DHS secretary Teresa Miller.

To quell the concerns of the over 300 families of persons with severe disabilities affected by the potential closures, the department cited the “successful 2018 closure . . . of Hamburg State Center,” another state-run institution for adults with severe intellectual and developmental disabilities, as a model for the prospective closures of the Polk and White Haven centers. It is certainly bizarre to call the Hamburg closure “successful”: At least eleven of the 85 former Hamburg residents who were forcibly displaced from the center last year have died.

Sara Luterman, a self-described “disabled disability writer,” wrote an article in the Washington Post defending the closure of the two centers. She characterizes the emotion displayed by workers, families, and some residents at the two facilities — many of whom took to the capitol in Harrisburg to both protest and testify against the proposed closures — as subterfuge meant to conceal a
broader, internecine left-wing dispute between “disability rights advocates” and those in “organized labor” who work at state institutions.
Luterman argues that the anguish displayed by those workers at the two facilities, apparently disturbed by the prospect of displacing hundreds of persons with severe disabilities from the care setting that they or their guardians have chosen, was a ruse deployed to save their jobs at the expense of residents who would be better served in the “community.”

What is clear, from this and other items that Luterman has written, is that she is not fond of settings that she deems “institutions” — which she defines broadly to include everything from large state facilities such as Polk and White Haven to six-person group homes. Luterman’s right to dislike such settings is undisputed, but her right to impose those preferences onto thousands of persons with disabilities and their families is very much in dispute. These individuals and their families have not elected Sara Luterman as their spokesperson, but she presumes that her preferences are theirs or, worse, doesn’t care what their preferences are at all. Jill Barker, the mother of a son with severe disabilities, noticed this phenomenon in 2015: “Disability self-advocates support the elimination of services and residential housing that they personally abhor,” in turn stripping “people with higher support needs who lack the ability to make decisions for themselves” of those services that they require.

Families Say Center Closings Endanger Severely Disabled Kids
By Charlotte Ames, WTAJ-TV, November
This week, the state senate passed a bill that would place a moratorium on the closing of two state centers, for people with intellectual and development disabilities. That gives some relief to the families of people who live at these facilities as well as the one in Ebensburg.About 700 people receive care at state centers, down 70 percent since 1999. The Wolf Administration’s goal is to move more, if not all of them, to group homes and other community settings. Family members say that isn’t realistic.

Susan Jenning’s 27-year-old son Joey lives at the White Haven Center, one of those slated to be closed. He’s severely autistic, intellectually disabled, and has psychiatric disorders.

“He’ll destroy property, he’ll elope into the highway, he’ll hit people, and then it’s gone. He’s always very regretful afterwards,” Susan said.

Before being admitted to White Haven, Joey was discharged from six group homes, and put in five psychiatric wards, overmedicated and injured.
“The stitches in back of his head, they contend he ran into the back of a door, eye socket being broken, they contended he got into an altercation,” his mother said.

Jason Sauter lives at the Ebensburg Center. His mother Adrienne said, at 22, the severely autistic man has the mental age of an eight or nine year old. He’s like a talkative charming little boy, who has meltdowns out of the blue.
Jason didn’t last a month at a group home.
“He escaped into the neighbor’s yard and got into their swimming pool and almost drowned and they said there was nothing they could do to stop it,” Adrienne said.

They called the police and Jason ended up in a psychiatric hospital for four months, until someone told his parents about the Ebensburg Center.
“It was not possible to mainstream him. He has too many behavior issues. He can be a danger to himself and to others,” his mother added.

Born with cerebral palsy, 57-year-old Robyne Wheeler was taken to the Cresson Center at the age of twelve, when her mother had a medical emergency. It was to be a temporary arrangement.
“I believe that my mom realized that these facilities are great places,” her sister Renee said.

When Cresson Center closed, Robyne moved to the Altoona Center, and when it closed, she was sent to Ebensburg, where Renee visits her frequently.

National News:
Can Behavioral Interventions Reduce the Need for ADHD Medication?
Managed Care Magazine, November 19, 2019

A study conducted in a summer treatment program of 127 unmedicated children with ADHD showed that when concurrently receiving behavioral intervention, many did not need medication or responded best at very low doses. In a subsequent study, researchers from Florida International University followed those children into the school year to find out whether the same would be true when they were in their regular home and school settings. 

The children were randomly assigned to receive low- or high-intensity behavioral interventions, or no intervention. The interventions included a daily report card as a tool to help manage behavior and academic performance. Teachers also used reward systems, point systems, and other measures. The children were evaluated by teachers and parents each week to determine whether medication was needed.

The children who received continued behavioral intervention were about half as likely as those who didn't to start medication each week at school or at home. They also continued to use lower doses when getting medicine at school. With every additional year in age, a child was 13% less likely to initiate medication each week.

U.S. Commission on Civil Rights, Public Briefing on Subminimum Wages: Impacts on the Civil Rights of People with Disabilities
November 15, 2019,Washington, DC
The U.S. Commission on Civil Rights held a Public Briefing on Subminimum Wages and the impact on the Civil Rights of People with Disabilities on November 15th in Washington, D.C.

CMS Withdraws Proposed Guidance on Medicaid Block Grants, Funding Caps
By Danielle Brown, McKnight's Long Term Care News, November 18, 2019
States considering implementing Medicaid block grant systems will have to wait at least a little longer for federal guidance on the policies.

Proposed guidance on block grants and per capita cap programs was withdrawn by the Centers for Medicare & Medicaid Services on Friday after being taken under consideration by the White House Office of Management and Budget.

Under block grant systems, states would receive a fixed amount of Medicaid funding and could mean limited funding for providers, who almost universally oppose them. The proposed guidance would have cleared the way for states to obtain a federal waiver allowing them to cap federal funding for their Medicaid programs, Bloomberg Law reported.
Verma’s comments also hinted that providers would have faced more scrutiny under the guidance. She stated that the Medicaid Value and Accountability Demonstration won’t compromise important beneficiary protections, but instead “will inject rigorous accountability for outcomes, provide significant and unprecedented flexibilities for program operation, and offer opportunities for shared savings that can be reinvested back into Medicaid.”

CMS Needs Better Abuse Oversight for Nursing Homes: GAO (Government Accountability Office)
By Danielle Brown, McKnight's Long Term Care News, November 17, 2019

The Government Accountability Office alleges that the Centers for Medicare & Medicaid Services has yet to enforce several of its recommendations after a GAO report found oversight gaps in abuse reporting requirements for nursing homes.
The GAO made the proclamation Thursday in a follow-up report. Its original report, which was released earlier this year, found that abuse deficiencies cited in nursing homes more than doubled from 2013 to 2018. 
It also determined that information on abuse and perpetrator types were not readily available, facility-reported incidents lacked key information, and gaps in the CMS process for state survey agency referrals to law enforcement. 
The GAO recommended in the first report that CMS require state survey agencies to submit data on abuse and perpetrator type and develop guidance on what abuse information nursing homes should self-report. 
It also made several recommendations on timely referring abuse to and sharing information with law enforcement, substantiating allegations and tracking referrals. The Department of Health and Human Services (HHS) agreed with each of those recommendations. 
HHS, which houses CMS, has yet to implement any of those guidelines as of November, the GAO now argues.

Santa Offering Sensory-Friendly Events Nationwide
By Shaun Heasley, Disability Scoop, November 21, 2019
Ahead of his big night, hundreds of special events across the country will offer kids with disabilities a chance to visit with Santa Claus in a calmer setting.

Some 747 sensory-friendly Santa events are planned at 582 shopping centers in the United States and Canada this holiday season.
The so-called “Santa Cares” events will feature dimmed lights and music set to a lower volume. Santa is specially trained before all of the events to take cues from parents and on interacting with children who have special needs.

“Most of all, Santa remains flexible, standing behind his chair or kneeling beside a wheelchair to capture unforgettable moments and smiles on camera,” said Ruth Rosenquist of Cherry Hill Programs, which organizes the events in conjunction with Autism Speaks.
“Santa Cares” events are held at malls and other shopping centers before they open for the day to allow visits with Santa before the crush of holiday shoppers arrive.
To participate, families are asked to reserve a time online in advance so that children with special needs can be called up individually and don’t have to wait in line.

Events will be held on Nov. 24, Dec. 1 and Dec. 8 at various locations across the country and are open to individuals of all ages.

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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


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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