January 10, 2020
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
It's not too early to start planning!

VOR's 2020 Annual Meeting & Legislative Initiative

 Hyatt Regency Capitol Hill
Washington, D.C.
June 6 - 10
VOR's Annual Meeting and Legislative Initiative will be held on June 6 - 10th this year.
Details will be forthcoming.

If you are planning on creating a crowdfunding campaign, now is the time to begin!

Our room reservation block at the Hyatt won't open for several weeks, but it's not too early to start planning your stay and making reservations for air or train travel.
VOR and YOU:
The Administration for Community Living (ACL) is seeking public input on the proposed data collection for the Development Disabilities State Plan
Deadline: January 13, 2020

Please consider going on to the website for your state’s Council for Developmental Disabilities to review the group’s current goals/priorities and its required Five Year Plan. Do these reflect your family member’s realities/needs?
You might note:
  • If Council funds have been awarded to the Arc or SABE (self advocates becoming aware), entities which work to undermine and eliminate intermediate care facilities;

  • If Council membership includes one or more members who represent the interests of ICF families and residents;
  • If Council members/and/or Council staff have testified against ICF funding before policy makers/media.
Comments on state DD councils may be sent to:
Sara Newell-Perez
Administration for Community Living
Washington, DC 20201, 202-795-7413
After your submission, please consider sending copies to your congressional delegation.
Public Service Announcement

The following is a public service announcement from VOR's Susan Jennings about the importance of ICF care.

ACL Request for Information: RAISE Family Caregiving Advisory Council

The Administrator of the Administration for Community Living (ACL) and the Family Caregiving Advisory Council is seeking public input on the challenges faced by family caregivers.

ACL is requesting information from individuals and from organizations to assist the RAISE Family Caregiving Advisory Council in developing goals, objectives and recommendations for an initial report to Congress and national family caregiving strategy, which are required by the RAISE Family Caregivers Act of 2017. The input will also help the Council plan public listening sessions that will begin in 2020.

Input is being sought on a broad range of family caregiving experiences, challenges faced every day by caregivers, and recommended actions and best practices that can expand or improve existing supports for caregivers.

The RFI deadline is February 7, 2020.
To learn more, click here .
To submit information, click here .
To go to ACL's RAISE Family Caregiving Advisory Council website, click here
Individuals with Intellectual Disabilities Need a Choice of Services
Tine Hansen-Turton and Brian Valdez, the 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 ADA’s groundbreaking protections against discrimination have been copied around the world. Because of this law, the disabled have greater access to housing, employment, education and public spaces. The Olmstead Decision enhanced these protections by outlawing unjustified segregation based on disability and mandating that states provide community-based services under Medicaid when appropriate. 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 Ginsburg 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.

National News :
Saliva Test For Autism Hits Market
By James T. Mulder, Syracuse Media Group via Disability Scoop, January 8, 2020

A saliva test designed to quickly diagnose autism in toddlers has hit the market after seven years of research at SUNY Upstate Medical University and Penn State.The researchers hope the test will help doctors detect autism faster and get children help sooner, when it can be most effective.

The test was released in December by Quadrant Biosciences Inc., a company located on Upstate’s Syracuse campus. The company partners with Upstate through the state’s StartUp NY program which gives new and expanding businesses tax breaks and access to university researchers.

The prevalence of autism is soaring. An estimated 1 in 59 U.S. children are diagnosed with the disorder, up from 1 in 125 in 2008. Autism is a developmental disability that affects learning, communication and interaction with others.

Congress Hands Special Ed Hefty Funding Boost
By Michelle Diament, Disability Scoop, January 9, 2020
Federal funding for special education will rise the most it has in years under a newly approved government spending plan.

The increase comes as part of a $1.4 trillion package signed late last year by President Donald Trump that will fund the federal government through the end of September.

The measure includes level funding or increases for most programs that people with disabilities rely on, advocates said.

But special education is a big winner with a $400 million rise over last year. That’s the largest increase the program has seen since 2016, according to Annie Acosta, director of fiscal and family support policy at The Arc. The added funds are the culmination of many years of advocacy driven by school groups and disability advocates alike who have been frustrated by underfunding of special education, she said.

Outside of special education, funding to support respite care initiatives is up $2 million in the spending plan — a 48 percent increase — and the federal government will grow its support for vocational rehabilitation as well as a program to train professionals to screen and diagnose autism. The Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities will also see a bump.

Trump Signs 5-Month Extension Of Money Follows the Person
By Michelle Diament | January 6, 2020

For the fourth time in a year, lawmakers acted to keep alive a program that moves people with disabilities from institutions into the community, but its long-term fate remains in jeopardy.

Money Follows the Person will stay afloat until May 22 under a plan that was included within a larger federal appropriations package signed by President Donald Trump just before the close of 2019.

Under CMS’s Proposed Medicaid Crackdown, Billions in Payments Hang in the Balance
By Maggie Flynn, Skilled Nursing News, January 9, 2020
With the federal government looking to crack down on the programs used for shoring up Medicaid reimbursements for nursing homes and other care facilities, billions of dollars could soon be in the balance.

The Centers for Medicare and Medicaid Services (CMS) this past November proposed a rule that would rein in spending on Medicaid supplemental payment programs, due to concerns about the arrangements that have evolved over time.

“We have seen a proliferation of payment arrangements that mask or circumvent the rules where shady recycling schemes drive up taxpayer costs and pervert the system,” CMS administrator Seema Verma said in a statement announcing the Medicaid Fiscal Accountability Regulation (MFAR).

With the comment deadline for the proposed rule recently extended to February 1 from January 17, SNN dove into some of the statistics on a state-by-state basis, as listed by the Medicaid and CHIP Payment and Access Commission’s (MACPAC) December 2019 data book.

MACPAC is a non-partisan government agency that advises Congress on Medicaid issues, similar to the Medicare Payment Advisory Commission’s (MedPAC) role on Medicare policy.

In the fiscal year 2018, nursing facilities (NFs) and intermediate care facilities for people with intellectual disabilities (ICF/IDs) received $50.54 billion in Medicaid fee-for-service payments across the U.S., according to the data book.
In the fiscal year 2018, nursing facilities (NFs) and intermediate care facilities for people with intellectual disabilities (ICF/IDs) received $50.54 billion in Medicaid fee-for-service payments across the U.S., according to the data book.

For that same fiscal year, supplemental payments to NFs and ICF/IDs accounted for $3.47 billion in payments, or 6.9% of the total Medicaid fee-for-service reimbursement, according to the data book. But for several states, supplemental funds represented a significantly greater percentage of the Medicaid fee-for-service payments to NFs and ICF/IDs.

Twenty-five states provided some kind of supplemental payment to nursing facilities as of July 2019, according to a policy issue brief from MACPAC in December 2019.

In Indiana, for example, supplemental payments account for $1.02 billion out of $2.69 billion in total Medicaid fee-for-service funding. That translates to 37.9% of total such payments — far and away the leader for all states in both the percentage and dollar-value categories.

Nevada’s NFs and ICF/IDs receive $292.8 million in total Medicaid payments, with $102.6 million in supplemental dollars, or 35% of the total Medicaid haul. In New Hampshire, supplements to NFs and ICF/IDs account for 24.1% of total Medicaid payments, coming in at $96 million; the state receives a total of $398.8 million in total Medicaid fee-for-service payments.

State News:
Florida - Legislature Eyes More "Certificate of Need" Changes for Intermediate Care Facilities
News Service of Florida, Tampa Bay Business Journal, January 9, 2020

After eliminating certificates of need last year for hospitals, Florida lawmakers will consider making changes to the so-called CON law for new intermediate care facilities for people with developmental disabilities.
House Health Quality Chairwoman Colleen Burton, R-Lakeland, filed a proposal (HB 1163) on Wednesday that would allow facilities to be built outside of the CON process so long as they meet certain requirements.

Senate Health Policy Chairwoman Gayle Harrell, R-Stuart, has filed the Senate version (SB 1344). Certificate of need is a regulation that requires health care providers to prove to the state that there is a “need” for new facilities or services they want to offer.

Lawmakers last year eliminated the CON program for new hospitals and tertiary programs, such as organ transplants. Lawmakers chose to keep the CON requirements for intermediate care facilities for people with developmental disabilities, which are exclusively for Medicaid beneficiaries, and nursing homes, which also provide large amounts of Medicaid care.

The new bills tailor the proposed exemption for intermediate care facilities for people with developmental disabilities to providers that can build three eight-bed homes on a single campus. To qualify for the exemption, providers also would be required to dedicate two-thirds of the beds on their campuses to residents “with severe maladaptive behaviors.”

Iowa - Funding cut Forces Changes at Skyline Center
By Winona Whitaker, Clinton Herald,
January 3, 2020
A decrease in funding and change in philosophy is causing the closing of the sheltered workshop at Clinton’s Skyline Center, Inc.

Skyline, a nonprofit organization that helps people with disabilities live independently and reach employment goals, is funded in part by the Eastern Iowa Mental Health and Disabilities Services Region.

Mental health regions were created across the state of Iowa in July 2014, an attempt to improve service through consolidation of resources. State regulations governing the regions have been volatile, and counties have butted heads over equality of contributions and distribution of funds.

“Back in September, the [Eastern Iowa] region had to cut … just over $1 million from its budgets,” Skyline Executive Director Shane Buer said Thursday. That included $250,000 for sheltered workshops.

Nationally, advocates are pushing to move the disabled from sheltered workshops to jobs and volunteer services in the community, Buer said.
“We do have several people that already have jobs in the community,” said Teresa Dolph, Skyline’s service coordinator.

“My son is working in the community,” said Barb Rickerl, the mother of a Skyline client. “He works Monday, Tuesday and Wednesday at Kwik Star.” On Thursday and Friday, he went to the sheltered workshop.

But the 38-year-old with Downs Syndrome will no longer be able to work with his friends in the Skyline workshop. “[Skyline] had a meeting with all the parents and guardians ... and said they were going to lose funding for the workshop,” Rickerl said in December. “And a lot of the clients would have to be moved into day hab.”

Iowa - State To Withhold $44 Million From Iowa Total Care
By Natalie Krebs, Iowa Public Radio, January 3, 2020
According to a letter from state Medicaid Director Mike Randol to Iowa Total Care CEO Mitch Wasden, the state will withhold the payment until the company has corrected "claims payment issues and encounter data issues." 

The state claims Iowa Total Care has failed to pay 106,000 claims. The money withheld amounts to just over a quarter of the company's monthly payment.

The letter states the company was issued multiple verbal and written warning about the issue. The state said will make the decision to release the money at the end of February.
Since the state's Medicaid system was privatized in 2016, it has experienced significant turbulence and turnover.

Massachusetts - DDS Terminates Contract with Provider to Operate Two Problematic Group Homes
By Dave Kassel, The COFAR Blog, January 7, 2020

The state Department of Developmental Services (DDS) has terminated a contract with a corporate provider to run two problematic group homes in East Longmeadow for persons with developmental disabilities.

The contract termination with the Springfield-based Center for Human Development (CHD) was confirmed to COFAR on Monday (January 6) by the provider.

The DDS action, which appears to be relatively unusual for the department, came after Mary Phaneuf, the foster mother of a resident of one of the group homes, alleged poor care in her son’s residence. She said she was told by DDS that due to the contract termination, her son, Timothy Cheeks, and other residents in his home will have to move this month to another residence operated by another provider in Longmeadow.

Starting in 2018, Phaneuf alleged a lack of proper medical care for Tim, including no documented visits to a primary care physician or dentist for seven years. She also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.
Phaneuf’s allegations led to DDS investigations last year, which found “potential systemic issues” throughout CHD’s residences, according to a DDS summary document obtained by COFAR. Her allegations also led to the adoption of new management policies by CHD.

Texas - Students Still Fighting For Special Education
By Shelby Webb, Houston Chronicle via Disability Scoop, January 7, 2020

Years after Texas education officials pledged to undo a decade worth of damage caused by a cap on special education services, the state remains in violation of federal disability laws.School district administrators are still clamoring for guidance and funding.

And parents are still complaining that they’ve had to beg or threaten to sue in order to get their children evaluated for extra help in the classroom.

They say Texas students are being denied special education — again.

The Houston Chronicle revealed more than three years ago that the state had systematically denied tens of thousands of students special education services, triggering a federal investigation and a series of promised changes by the Texas Education Agency.

Although the state has made some progress, it has yet to deliver critical resources promised to parents and guidance overdue to districts, an investigation by the Houston Chronicle and Houston Public Media shows.

“We have ruined a generation of kids,” said Sonja Kerr, an attorney who works on behalf of students with disabilities, “and we are about to ruin another generation with the inaction from TEA and the complete complacency.”

From our very own Blogger:
Disability Wrongs: Advocacy Gone Awry
By Jill Barker, The DD News Blog,
January 9, 2020
This video is from ACCSES, an organization representing disability service providers including providers of work centers (sheltered workshops). On 7/25/18, the organization held a Capitol Hill Briefing in defense of a broad range of work settings for people with disabilities including work centers for people who would otherwise be unable to compete for employment. Self-advocates who participate in these work programs were scheduled to speak, but they were shouted down and the meeting disrupted by other self-advocates from disability organizations with opposing views. 

According to ACCSES, this is what happened:

“Despite what disability policy seems to indicate: People with disabilities are not a monolithic group. Rather, people with disabilities are individuals, with the same right to choose where they want to live, work, and thrive as anyone else. That basic civil right to live life with dignity and respect is being subsumed by feel-good laws that do not benefit many individuals, and advocates who support those laws over individual rights. That’s the rub.

Right now, current and proposed laws and regulations, as well as policymakers, agencies, and some advocates—even those with good intentions—are putting a broad range of employment, residential, and community support options for people with disabilities at risk. In doing so, they are taking away the civil rights of individuals with disabilities.
“That was never made more clear than on July 25, 2018, when a dozen people with disabilities, some of whom work on the Capitol campus and others who traveled all the way from the middle of the country, wanted to share their stories of why their jobs matter. Instead, they were shut down by advocacy groups that crashed an ACCSES Capitol Hill briefing and frighteningly shouted over the self-advocates with disabilities who were scheduled to speak. The Capitol police had to be called, the individuals who came to speak never got to address the audience in the room. This is where current disability policy has led, not to increased opportunity and respect, but to a concerted effort to take away the civil rights of individuals with disabilities by limiting their choices. It must end. Individuals must be allowed to live, work, and thrive in settings that best meet their needs – not the needs of others.” 

The organizations taking the lead in these disruptive activities were ADAPT and NCIL, the National Council on Independent Living. They put out their own version of events on 7/25/18, “Disability Rights Groups Protest Provider Efforts to Continue the Exploitation and Isolation of People with Disabilities”.

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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