July 12, 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

Announcing: VOR's New YouTube Page


Speaker Videos from
VOR's 2019
These videos, the materials that we shared with Congress,
and pdfs of the state reports presented at the conference
are all available for download on our website:
National News:
CMS seeks to reduce state reporting on Medicaid access, pay cuts
By Harris Meyer, Modern Healthcare, July 11, 2019
The CMS wants to lower states' requirements for showing that their Medicaid fee-for-service payment rates are adequate to enlist enough providers to offer beneficiaries satisfactory access to care.

The rule proposed Thursday would rescind a 2015 Obama administration rule requiring states to file an access monitoring review plan and update it at least every three years.

The CMS said the proposed rule would save states money, and that it would issue a separate guidance reminding them that they must ensure beneficiaries have adequate access to care. The public will have 60 days to comment.

State officials had complained that the 2015 rule imposed excessive administrative burdens. They also said it wasn't needed given that most Medicaid beneficiaries across the country now are enrolled in private Medicaid managed-care plans, which must meet CMS network access standards.

"Rather than micromanaging state programs through complex federal mandates, CMS is easing the administrative burden on states while focusing on holding them accountable for delivering high-quality, accessible care to beneficiaries," CMS Administrator Seema Verma said in a written statement.

The proposal is the latest move in a long-running struggle to make sure Medicaid patients have adequate access to care despite the program's generally low payment rates to providers. The
CMS currently is working on controversial revisions to the Obama administration's network adequacy and access standards for Medicaid managed-care plans.

Matt Salo, executive director of the National Association of Medicaid Directors, praised the new CMS proposal on state reporting requirements as "a sensible step forward" because the 2015 regulation wasn't working. "We're all committed to meaningful access and to measuring that in ways that are outcomes-oriented," he said.

But other Medicaid experts warned that dropping the reporting requirements would make it more difficult to determine whether there are an adequate number of physicians and other providers available to serve patients in both the Medicaid fee-for-service and managed-care programs.

"They are eliminating the data that serves as an early warning system," said Sara Rosenbaum, a health law professor at George Washington University and former chair of the Medicaid and CHIP Payment and Access Commission. "Managed care is only feasible where there is an adequate supply of providers. If the network is illusory, you need to know that."

Survey Finds Teachers, Paraeducators Largely Unprepared For Students With IEPs
By Michelle Diament, Disability Scoop, July 9, 2019
Special educators say that many of the teachers and paraprofessionals who work directly with students with disabilities are ill-prepared to do so.

In a survey of nearly 1,500 special education teachers across the country, just 8 percent rated the general education teachers they work alongside as well-prepared to serve students with exceptionalities. And, only 12 percent had confidence in the paraeducators who are frequently tasked with supporting kids with disabilities at school.

The newly-released findings come from a survey of special education professionals conducted in fall 2018 by the Council for Exceptional Children, a group that represents special educators.
“This is problematic, given that inclusion is the most cited strategy for instruction of children with exceptionalities, the majority of whom are served in general education settings,” CEC noted in a report about the survey.

More than half of students with disabilities spend at least 80 percent of their day in general education environments, according to federal data, so the ability of general education teachers and paraprofessionals to serve this population can have a significant impact.

Most States Failing To Meet Requirements Under IDEA
By Michelle Diament, Disability Scoop, July 12, 2019
Fewer than half of states are meeting their obligations to properly serve students with disabilities, the U.S. Department of Education says.

In an annual review of performance under the Individuals with Disabilities Education Act, federal officials found that just 21 states deserved the designation of “meets requirements” for the 2017-2018 school year.

The remaining states were classified as “needs assistance.”

The determination letters issued late last month are based on how well schools addressed the needs of students with disabilities ages 3 to 21.

The ramifications can be significant for states that do not achieve the “meets requirements” designation. Federal special education law requires the Department of Education to step in if a state fails to meet that threshold for two or more years in a row. Enforcement actions can include
directing how states use funds, withdrawing funding, requiring a corrective action plan or involving the Education Department’s inspector general or the Department of Justice.

States that were found to meet requirements include Arizona, Connecticut, Florida, Indiana, Kansas, Kentucky, Maine, Massachusetts, Minnesota, Missouri, Montana, North Dakota, Nebraska, New Jersey, Ohio, Pennsylvania, South Dakota, Virginia, West Virginia, Wisconsin and Wyoming.

The remaining states and Washington, D.C. were given the “needs assistance” designation. No states were given the more dire labels of “needs intervention” or “needs substantial intervention.”

State News:
New York - Judge Orders Expanded Oversight for Mentally Ill New Yorkers In Supported Housing
By Joaquin Sapien, ProPublica, co-published with PBS Frontline, July 12, 2019
Not enough people are covered by an oversight system meant to safeguard residents of a New York housing program for people with mental illness, a federal judge found this week, after reviewing a report commissioned in response to a ProPublica and Frontline investigation.

Since January 2014, more than 750 people with severe mental illness have moved out of troubled New York City adult group homes and into subsidized apartments under a federal court order. The idea was to give them a chance to live outside institutions, with services coming to them as needed through a program called supported housing.

But last December, ProPublica and Frontline revealed that more than two dozen people who had moved out struggled to live safely on their own. Many had been repeatedly hospitalized. One went missing; another was in jail. At least six had died under suspicious circumstances, and the state had only recently developed a system to track such incidents.

The story prompted U.S. District Judge Nicholas Garaufis to order a report from Clarence Sundram, the independent court monitor assigned to oversee the transition. Garaufis asked Sundram to gauge the effectiveness of the incident reporting system implemented in the summer of 2018.
Perhaps the biggest flaw is that the new reporting system only covers about a quarter of the people who have moved out of adult homes — those enrolled in what’s called Adult Home Plus, a special program where residents are assigned a “care coordinator” with a caseload of no more than 12 to meet with them four times a month and help them organize their services.

According to the latest figures in Sundram’s report, only 179 residents are enrolled in Adult Home Plus out of the 774 who have moved out.

Except for the neediest supported housing residents, that program is only supposed to last for the first six months after they move out. Sundram found that serious incidents often occur well after someone’s first six months in supported housing.

“We recommend strongly, as we have previously, that the requirements for Incident Reporting be extended to include all class members living in supported housing,” Sundram said in his report. “It seems incongruous that two class members could be sharing the same apartment and have different levels of protection based on factors that are not related to the potential risks they face.”

Tennessee - Families of kids with disabilities see 'light at the end of the tunnel' as Katie Beckett waiver nears
By Natalie Allison, Nashville Tennessean, July 11, 2019
The families of children with severe disabilities joined lawmakers on Wednesday as Gov. Bill Lee ceremoniously signed a bill that will provide additional state and federal Medicaid funding for treatment.

The legislation requires that the state apply with the Centers for Medicare & Medicaid Services for what is known as a Katie Beckett waiver. The waiver covers medical treatment for children with disabilities and severe illnesses whose families wouldn't otherwise qualify for TennCare, the state's Medicaid program.

Tennessee was among the last states to seek out the federal Katie Beckett waiver, a program created under President Ronald Reagan.

"It's kind of like a light at the end of the tunnel," said Rosalie Howes who, along with her husband of nine years, had already begun filing for divorce as a last resort to try to meet income requirements to obtain the state's help with treatment for their son Hyrum.
She pushed Hyrum in his wheelchair while the mother and son attended the ceremonial signing on Thursday.

Now that the Katie Beckett waiver is in motion, likely meaning much-needed assistance for the family, Howes said the couple has stopped the process and will remain a family living under one roof.

"We're going to scrape by for another couple months until they get this set up for us," Howes said of the waiver.

TennCare and the Department of Developmental and Intellectual Disabilities is still in the process of crafting the plan for the program that it will submit to the federal government. The state has 120 days to do so from the time Lee officially signed the bill on May 24.

Arizona - Hacienda HealthCare is Not the Hellhole You've Heard About on the News
By Alan Strobel and Heidi Reid-Champigny, opinion contributors, Arizona Central, July 5, 2019
This week, family members of residents of the Hacienda HealthCare Intermediate Care Facility (ICF) spoke out in defense of the unit our loved ones call home.

We could no longer stay quiet while this outstanding facility suffers attacks by disgruntled former employees leaking half-truths and rumors, political opportunists and sensationalizing reporters.

The Hacienda we know in no way resembles the helhole you’ve seen depicted in breathless news broadcasts.

Moving residents could result in their death

Unfortunately, false portrayals of Hacienda have driven state and federal oversight agencies to the brink of defunding the ICF and revoking its license. Should this unit close, our medically fragile, developmentally disabled loved ones will surely lose their quality of life.

Given their poor health, the movement of these residents to another ICF could also result in one or more deaths.

What is Hacienda HealthCare really like?
Our group of guardians agrees unanimously: Nowhere else have our family members received the high-quality care Hacienda provides.
Still, Hacienda isn’t perfect.

No one could have predicted sexual assault

The December story that first made headlines – the sexual assault and impregnation of a resident by her longtime nurse – was absolutely tragic. We don’t mean to diminish the pain experienced by the victim or her family.
Each of us would be destroyed should a family member be similarly victimized. At the same time, that single event, which could not have been predicted based on the nurse’s past, in no way reflects the care our loved ones have received at Hacienda.

In the aftermath of the sexual assault, Hacienda has responded with transparency, self-reporting this incident and cooperating with scores of inspections. Hundreds of thousands of dollars have been spent improving security and employing police officers to guard the residents – including from threats made by an angry public, which have deeply upset our families.

The reality? Hacienda’s interim CEO, Perry Petrilli, and its direct care teams have done excellent work responding to every request to improve the facility. They have spared no expense and it shows.

Medicaid Managed Care:
New York - Seeking Savings, NY Tries to Remove Long-Term SNF Residents from Managed Medicaid
By Maggie Flynn, Skilled Nursing News, July 7, 2019
Several states across the U.S. have eyed managed long-term services and supports as a way to reduce their Medicaid spend, but the state of New York — which made the move in the early part of the decade — is now taking a step back.
Specifically, the Empire State is looking to move the long-term care patients living in skilled nursing facilities off of mandatory managed Medicaid and back onto fee-for-service Medicaid if they are in a SNF for longer than three months.

The state waiver amendment is awaiting approval from the Centers for Medicare & Medicaid Services (CMS), New York Department of Health (DOH) spokesperson Jill Montag said in a statement.

In terms of the numbers, by limiting managed long-term care eligibility to less than three months in nursing homes, New York expects to achieve $157.96 million in gross savings for state fiscal year 2018-2019. For 2019-2020, the state expects to see $246.14 million in gross savings, according to the 2018-2019 Executive Budget Scorecard.
If CMS approves the waiver, the change should be implemented in the first quarter of 2020, Marc Zimmet, the president and CEO of Zimmet Healthcare Services Group, told Skilled Nursing News.

“With Medicaid managed care in the nursing facility, this is what New York finally realized: It doesn’t make sense,” he said. “In the community, it makes all the sense in the world for a Medicaid patient to be in managed care. A managed care company can benefit; they can take risk, because the goal is to keep patients out of the hospital, keep them out of the nursing home.”

But once a patient is admitted to a SNF and becomes a long-stay resident, that logic no longer applies. When patients are in a nursing home, it’s much harder to reduce utilization, Zimmet argued, and cutting provider rates is unrealistic, given how low existing rates are.

Iowa Agrees to $115M Increase in New Medicaid Contracts
By Michaela Ramm, The Gazette, July 10, 2019
The two companies that manage Iowa’s Medicaid program will receive an 8.6 percent increase in state and federal dollars for next year, according to new contracts signed by the state.

Officials announced Wednesday the state has signed contracts with Amerigroup Iowa and Iowa Total Care — the managed care organizations overseeing the program that provides health care for more than 600,000 Iowans — for fiscal 2020, which started July 1.

According to the contracts, the insurers are receiving a $386 million total increase in capitation rates, including $115 million from the state.
That is an 8.6 percent total increase, and a 6.5 percent increase in state funding over fiscal 2019.

The rates were negotiated behind closed doors by company officials and the Iowa Department of Human Services. A summary on the contract states the fiscal year 2020 rates — which are paid to the insurers on a per member per month basis — were “established and reviewed by an independent actuary.”

“Medicaid members and providers can be assured that both, Amerigroup and Iowa Total Care, are here to serve Iowans for the long term,” Iowa
Medicaid Director Michael Randol said in a statement. “These new contracts demonstrate a commitment to those we serve including greater access to hepatitis C treatment and additional funding for the adult mental health and children’s mental health systems.”

Iowa Senate Democratic Leader Janet Petersen criticized the funding increase, calling the contracts “outrageous” and the privatized Medicaid program “unsustainable, unaffordable and unpredictable.”

“Gov. (Kim) Reynolds has once again agreed to give the (managed care organizations) the largest dollar increases for Medicaid in the last decade,” Petersen said in a statement, “ ... The big cheerleaders for privatized Medicaid — Gov. Reynolds and Republican legislators — cannot back up their claims that privatizing would save money and make people healthier. That’s because it hasn’t happened.”

VOR Bill Watch:

Last month, the House combined the bill to reauthorize Money Follows the Person (MFP) with several other bills to create a new bill, H.R. 3253, the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 . A few days after introducing the bill, Congressswoman Debbie Dingell (D-MI) asked for a suspension of House rules, and called for a vote on the new bill without deliberation and without providing an opportunity for public comment. The bill passed the House and headed for the Senate. This bill would authorize $1.992 Billion to MFP for four years.

To date, the bill has not been officially introduced in the Senate. There is no bill number. It has been assigned to no committee.

The last time this happened, the bill suddenly appeared and passed in the Senate by voice vote. VOR is concerned that this will again be the case. We are in the process of reaching out to members of the Senate to request an audit of the Money Follows the Person Demonstration Program before allowing any re-authorization of funds. VOR contends that MFP has been used to close down ICFs, move people out against their will, and weaken the ICF system of care for our most vulnerable citizens.


Click on blue link to view information about the bill


H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

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).


H.R. 3253 & S ??? - Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 - This bill would authorize nearly two billion dollars over four years for the Money Follows the Person Demonstration Program.

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. 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.

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.
What's Happening In Your Community?

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