September 6, 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

Fall Is Here

The days are growing shorter and cooler. Kids and grandchildren are going back to school. And for VOR, September marks the beginning of our membership and fundraising campaigns. We try not to be over-bearing about this, but we rely on members for over 95% of our support.

If you are reading this, we hope that you are a current member of our organization. If you receive our newsletter as member of a family group or VOR affiliated organization, pr if the newsletter is forwarded to you by a friend, relative, or associate, we ask that you will support us by signing up and becoming an individual member.

VOR continues to support individuals and their families who are underserved by the system that administers care to people with intellectual and developmental disabilities, whether in ICFs, group homes, own homes, family homes, intentional communities,or farmsteads, or working in competitive or facility-based employment, We support guardianship protections and direct support professionals. We count on the support of people like you, to help give a voice to families like yours.

Medicaid and Managed Care for Long-Term Services and Supports:
Has your state transitioned to managed care for Long Term Care? Is your state in discussions about doing so? Do you and others in your state understand the possible consequences of managed care for long-term services and supports, as opposed to a fee-for-services system?

Many advocates for people with I/DD believe that managed care for LTSS will prove disastrous for the most severely disabled and for those whose treatment costs are higher than the median amount.

We encourage all of our members to watch Dr. James Edmondson's presentation from our conference last June to understand just how this may affect your family and your loved ones with I/DD. The video is available on our YouTube page. Please Click Here
Grassley, Casey Want Updates On LTSS In Medicaid Managed Care
By James Romoser, Inside Health Policy, August 30, 2019

Sens. Chuck Grassley (R-IA) and Bob Casey (D-PA) are seeking information from CMS and external auditing organizations about the quality of long-term services and supports being provided through Medicaid managed care.

In a letter to CMS Administrator Seema Verma Friday (Aug. 30), Grassley and Casey note that seniors and people with disabilities are increasingly receiving LTSS from Medicaid managed care through home- and community-based services.

“Managed care has the potential to improve outcomes and save money by streamlining health care services, and in many cases that has been documented,” the senators wrote. “However, the Medicaid managed care program must be responsive to the unique needs of those beneficiaries with disabilities.”
Grassley, the chair of the Senate Finance Committee, and Casey ask Verma whether CMS continues to use criteria first laid out in a 2013 agency guidance meant to encourage high-quality LTSS programs.

In addition, the senators ask how appeals and grievances processes have changed in light of the 2016 Medicaid managed care rule. According to a 2017 report from the Government Accountability Office on LTSS in Medicaid managed care, appeals and grievances were scheduled to change in July 2017.
The GAO report also recommended that CMS obtain more information about how states are monitoring beneficiaries’ access to quality services.

“What actions has CMS taken to implement such oversight activities?” Grassley and Casey ask in their letter.

State News:
Massachusetts - Why didn’t state Licensing Inspections catch problems at Center for Human Development Group Homes?
By Shira Schoenberg, Mass Live, Aug 30, 2019

In 2017, the Department of Developmental Services conducted a routine inspection required to renew the license of the Springfield-based Center for Human Development to run group homes for adults with disabilities.

“The vast majority of individuals in the survey sample were supported to receive timely annual physical and dental examinations, attend appointments with specialists, and receive preventive screenings as recommended by their physicians,” the report said. “Within the agency’s individual home support program, staff routinely accompanied individuals on medical and psychiatric appointments and worked closely with healthcare providers to ensure that treatment recommendations were addressed and that follow-up appointments occurred.”

In fact, at two homes run by the agency, residents had been regularly missing doctors’ appointments for at least two years.

The Department of Developmental Services would learn in January 2019 that house manager Kathy Walker, who oversaw two homes run by CHD, had allegedly been falsifying reports of doctors’ visits. Up to eight residents missed 59 primary care visits, specialty care visits, and eye and dental exams between 2015 and 2019, according to CHD. The agency also identified two instances of financial impropriety involving a food stamp benefit check and client money.

CHD operates the home under a contract with Department of Developmental Services. CHD has since told the department that some documents included in the licensing review may have been inaccurate.
The incident is raising questions about the thoroughness of the state licensing process. David Kassel, a spokesman for the Massachusetts Coalition of Families and Advocates, or COFAR, said the organization, which advocates for people with intellectual and developmental disabilities and their families, has long questioned DDS’s licensing.

“We’ve long been concerned that the whole licensing process is not very thorough, because it doesn’t really seem to catch a lot of these problems,” Kassel said.

Kassel, who has read the 2017 report, said, “They didn’t seem to have any clue as to what was potentially going on.”

Arkansas - Medicaid Official Leaving to join Managed Care Firm
By Andy Davis, Northwest Arkansas Democrat-Gazette, August 31, 2019

An Arkansas Medicaid official is leaving for a job with a company involved in the managed care initiative that serves program recipients with expensive health needs, a spokesman for the state Department of Human Services confirmed Friday.

Catherine Kelley Silva, deputy director of the department's Division of Medical Services, will step down on Thursday to become government relations director for Anthem, according to her resignation letter.

The Indianapolis-based company's subsidiaries include Amerigroup, which handles administrative duties for Summit Community Care and owns a partial stake in the company.

That company is one of three managed care companies that in March began providing health benefits to about 45,000 Medicaid recipients with significant mental illness or developmental disabilities.
The companies are known as Provider-led Arkansas Shared Savings Entities, or PASSEs.

"I have learned a great deal about Medicaid management, policy and operations during my tenure at DMS, and particularly under your leadership," Silva said in the Aug. 8 letter to Medical Services Director Janet Mann. "I look forward to continued opportunities to collaborate with you and others at the Department to serve Medicaid beneficiaries in my new role."

Living in "The Community"
Efforts To Curb Restraint And Seclusion Still Largely Piecemeal
By Michelle Diament, Disability Scoop, September 6, 2019
Nearly a decade after Congress first considered restrictions on the use of restraint and seclusion in schools, a new report finds that rules continue to vary significantly from state to state.

Thirty states have “meaningful” laws on the books limiting restraint and seclusion among all children and 39 have some variety of restrictions specifically for kids with disabilities, according to an analysis published by the advocacy organization the Autism National Committee.

That’s up markedly from 2009 when just nine states had laws affecting all students and 21 had laws related to restraint and seclusion of those with disabilities.

A series of reports detailing hundreds of instances of abusive and even deadly uses of the practices led the U.S. House of Representatives to approve sweeping legislation in 2010 imposing first-ever national standards on restraint and seclusion in schools. However, the Senate failed to pass the bill and federal efforts have been stalled ever since.

Nonetheless, Jessica Butler, who authored the new report, says that the conversation at the federal level did spark change. Since 2017 alone, she said a dozen states have either enacted or strengthened legislation regarding the practices.
“The congressional spotlight has made the difference and caused states to act to protect children,” said Butler who previously served as congressional affairs coordinator for the Autism National Committee and led coalitions pushing for federal legislation. “But the improvements in some states make no difference to families in states with weak laws. A family which moves from Kansas to Missouri, or from Texas to Oklahoma loses its protections.”

Some states including Missouri, Nebraska, North Dakota and Oklahoma have “almost no protection” and Idaho has never addressed the issue at all, Butler said.

According to the most recent figures from the Department of Education, 122,000 students across the country were subject to restraint or seclusion during the 2015-2016 academic year. Children with disabilities accounted for 71 percent of restraint and 66 percent of seclusion cases.

However, in a report out this summer, the Government Accountability Office found that the Education Department data is incomplete and inaccurate, with many school districts falsely reporting zero incidents.

Washington - Once a Safeguard against Homelessness, Disability Payments Can’t Keep Up with the Rent
By David Kroman, Crosscut, September 4, 2019
The calls for housing started three, maybe four, years ago, arriving only sporadically to start. Before then, said Robin Tatsuda with the Arc of King County, individuals and families with disabilities mostly sought help with money management, Social Security or finding employment. The Arc, a nonprofit serving people with developmental and intellectual disabilities, rarely heard from clients on the edge of homelessness.

What began as a trickle soon quickened, and the smattering of calls for help with housing became a trend. "We started to see a really dramatic uptick of people who were homeless or at risk of homelessness or just housing unstable in some way," said Tatsuda, the Arc's director of information and family support.

Assistance with keeping or getting housing quickly became the Arc's number one request. For some people with disabilities, the struggle to keep up with rent meant that homelessness was becoming an increasingly possible outcome. Others were already there, unsure of where to turn to next.

Service providers have watched in recent years as the cost of housing has ballooned beyond affordability for many of their clients. This is especially true for those on a fixed income — disability insurance, in particular.
Since 2014, Supplemental Security Income (SSI) — a form of Social Security for low-income people unable to sustain consistent work because of a disability — has increased only slightly as King County rents have skyrocketed. Where the two once rose at a rate similar to one another, a yawning gap has opened over the past five years.
The cost of renting a home has nearly doubled in King County since 2014, while monthly SSI payments have increased by just 7%. In real dollars, Fair Market Rent — a federally published measurement of rents that includes gas and electric — has gone up by $645 for a studio in King County while SSI has gone up by just $50 to keep up with inflation. At $771 a month, that amount is the same in King County as it is in any other part of the country.

As a result, the once difficult, but conceivable task of using this federal assistance to find private-market housing has become all but impossible.

"Where it could have been a path out of homelessness before, it's not anymore," said Noah Fay, housing director at the Downtown Emergency Services Center.

Dental Care
Dental Students Will Soon Be Trained To Care For Those With Special Needs
By Blythe Bernhard, Disability Scoop, September 3, 2019
Dental school students will soon be required to learn how to care for patients with disabilities under new guidelines from an accrediting body.
The Commission on Dental Accreditation approved new standards this summer requiring all U.S. dental schools to train students in the assessment and management of patients with intellectual and developmental disabilities, among other special needs populations.

The change means that by mid-2020, schools that offer degrees in dentistry, orthodontics, dental hygiene and dental assistant programs must include clinical training with a “special needs” population of patients in their graduation requirements or risk losing their accreditation.

The National Council on Disability helped push for the change in standards after publishing a report in 2017 showing that adults with developmental disabilities are at higher risk for poor oral health and face multiple barriers to accessing care, including a shortage of appropriately trained professionals.
The change in dental education standards is a “huge breakthrough” after 20 years of work from dental professionals and disability advocates, said Amged Soliman, attorney advisor with the council.
“People with disabilities, specifically intellectual and developmental disabilities, can’t get dental care because dentists aren’t trained to treat them,” Soliman said. “It’s not fair they simply can’t get dental care because nobody knows how to do it.”

Historically, only students who completed residency programs in hospitals or who specialized in pediatric dentistry received any clinical training with patients with developmental disabilities, Bilello said.

That means people with disabilities are regularly turned away or sent to hospitals for dental care, where they may be treated under unnecessary sedation.

Note: For many people with more severe intellectual disabilities, nothing will change. Dentists will not be required to offer patients general anesthesia, and many dentists may reject patients who they deem untreatable without anesthesia. Nonetheless, this is a significant step in the right direction.
VOR Bill Watch:
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. 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?

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?

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