October 20, 2018
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
A Must Read :

Friends for Hire?
For those with severe I/DD, relationships with direct care staff are primary.

By Amy S.F. Lutz, Psychology Today, Oct. 14, 2018

My son, Jonah, has enjoyed many strong relationships over his 19 years, with amazing people I’ve considered it a privilege to know. They’ve drawn endless pictures of Ernie, Bert and Barney; taken him to the water park, the beach, and out for countless hamburgers and French fries; made playlists for him to spin to; even dressed up with him on Halloween as Kermit the Frog and his doppelgangers Kermit the Forg, Kermit the Grof and Kermit the Gorf (from a particularly entertaining skit featured on The Best of Kermit, which was one of the first VHS tapes Jonah ever watched).

And all of them were paid – as teachers, home aides, or hospital technicians.
Relationships like these are routinely dismissed as inauthentic and inferior to “real” friendship. In its position paper “Keeping the Promise: Self Advocates Defining the Meaning of Community Living,” the Autistic Self-Advocacy Network specifically defines “community” as a place where autistic people “integrate with people who don’t have disabilities, and this does not mean staff.”
But what if that’s what Jonah prefers?

VOR & You:

Let's bring new members into our fold, members who have a vested interest in our advocacy.

We can start in our family groups. Your group may have a membership in VOR, but do all of the members belong? Do all of your Board of Directors belong? If not, they may be missing our Weekly Newsletters, our Action Alerts, and our thrice-yearly print publication, The VOR VOICE. They may be missing information that will help them to become better advocates for their loved ones and the place they call home.

At your next Board meeting, ask members if they belong to VOR. If not, ask them if they would like to become members. Offer to buy them a year's membership. Or ask your Board to approve funds to register all of the Officers and Directors.

We promise that you will see a difference in the awareness and level of advocacy of your Board of Directors.
Please support H.R. 6786

H.R. 6786 - A bill to protect the interests of each resident of intermediate care facilities for individuals with intellectual disabilities in class action lawsuits by federally funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident's facility.

This is VOR's bill, and we have introduced this legislation over the course of several sessions of congress. Our sponsor, Bob Goodlatte (R-VA) is in his last term in Congress, and the bill will expire at the end of this session. Please contact your member of the House to ask them to cosponsor this important bill.

We will begin another round of this campaign on Sunday night. In the meantime, if you have not yet taken action, please click below to be a part of this important effort.

National News:
NIH Boosts Down Syndrome Research Funding

By Michelle Diament, Disability Scoop, October 15, 2018

Federal officials are committing millions of new dollars to Down syndrome research and they say even more money may be on the way.

The National Institutes of Health said this month that it has awarded $22.2 million to studying the chromosomal disorder and related issues.

The grants are part of the agency’s Investigation of Co-occurring conditions across the Lifespan to Understand Down syndrome, or INCLUDE, project. The initiative, which launched in 2018, was spurred by a congressional directive and is aimed at addressing health and quality-of-life issues among those with the condition.

With the new funding, the NIH said that its investment in the chromosomal disorder for 2018 is now at $59 million. The agency indicated that it plans to up its spending on the condition in 2019, if money is available.

“We have a unique opportunity to improve health outcomes for those with Down syndrome by increasing their inclusion in research,” said Francis Collins, director of the NIH. “People with Down syndrome are at risk for many of the same conditions as the general public such as Alzheimer’s disease, sleep apnea, heart disease and autism, and it is my hope that this effort will provide meaningful insights to find treatments that benefit both populations.”

CMS - Architect Of Maine’s Conservative Reforms To Social Safety Net Tapped For Position Overseeing Medicaid

Kaiser Health News, October 16, 2018

Mary Mayhew, who was announced as the deputy administrator and director of Medicaid and the Children's Health Insurance Program, worked previously as Maine's health commissioner under Gov. Paul LePage, a Republican known as a fierce opponent to Medicaid expansion.

Kaiser Health News linked to two articles for further information:

The Associated Press: Trump Taps Maine Official To Be In Charge Of Medicaid President Donald Trump has tapped a Maine official who battled Medicaid expansion for a position that puts her in charge of the national program, the federal agency confirmed Monday. Mary Mayhew's role of deputy administrator and director of the U.S. Center for Medicaid and the CHIP Services will place her in charge of the federal health care program for low-income people. Continued

Politico: Controversial Former Aide To Maine’s LePage To Run Medicaid Mayhew served as Maine's health commissioner for six years under LePage, leading efforts to tighten the state's Medicaid eligibility standards, add work requirements to the food stamp program and implement other conservative reforms. She supported LePage as he rejected efforts to expand the state's Medicaid program — repeatedly vetoing legislation and then resisting after nearly 60 percent of Maine voters approved expansion on a ballot measure in 2017. LePage is spending his final months in office fighting a court order to expand the program. Continued
Mitch McConnell Calls for Social Security, Medicare, Medicaid Cuts After Passing Tax Cuts, Massive Defense Spending

By Nicole Goodkind, Newsweek, October 16, 2018

After instituting a $1.5 trillion tax cut and signing off on a $675 billion budget for the Department of Defense, Senate Majority Leader Mitch McConnell said Tuesday that the only way to lower the record-high federal deficit would be to cut entitlement programs like Medicare, Medicaid and Social Security.

"It’s disappointing, but it’s not a Republican problem," McConnell said of the deficit, which grew 17 percent to $779 billion in fiscal year 2018. McConnell explained to Bloomberg that "it’s a bipartisan problem: Unwillingness to address the real drivers of the debt by doing anything to adjust those programs to the demographics of America in the future." The deficit has increased 77 percent since McConnell became majority leader in 2015.

New Treasury Department analysis on Monday revealed that corporate tax cuts had a significant impact on the deficit this year. Federal revenue rose by 0.04 percent in 2018, a nearly 100 percent decrease on last year’s 1.5 percent. In fiscal year 2018, tax receipts on corporate income fell to $205 billion from $297 billion in 2017.

Still, McConnell insisted that the change had nothing to do with a lack of revenue or increased spending and instead was due to entitlement and welfare programs. The debt, he said, was very “disturbing” and driven by “the three big entitlement programs that are very popular, Medicare, Social Security and Medicaid.… There’s been a bipartisan reluctance to tackle entitlement changes because of the popularity of those programs. Hopefully, at some point here, we’ll get serious about this.”


Support candidates who support our loved ones with I/DD.

State News:
Texas - Trial Starts Accusing State of Disabled-Service Violations
By Guillermo Contreras, MySanAntionio, October
A non-jury trial has begun in a San Antonio federal court to resolve an eight-year-old lawsuit alleging the state denied access to better living conditions to thousands of developmentally disabled Texans in nursing homes.

Chief U.S. District Judge Orlando Garcia began hearing testimony Monday. The bench trial is expected to last three to four weeks.

The federal lawsuit, filed in 2010 in San Antonio, alleges the state isn't providing some mentally and physically disabled Texans the opportunity to move into community-based settings, which advocates say are less restrictive and more rehabilitative than nursing homes.

The Coalition of Texans with Disabilities and the Arc of Texas filed the original lawsuit on behalf of a number of plaintiffs, which included three from San Antonio. Since then, the judge has certified it as a class action suit.

Named as a defendant is Cecile Young, acting director of Texas Health and Human Services. HHS spokeswoman Carrie Williams said, “We will comment when appropriate and if warranted at the conclusion of the case.”

The suit accuses the state of violating the Americans with Disabilities Act, and not following the federal Nursing Homes Reform Amendments to the Medicaid Act.
Chief U.S. District Judge Orlando Garcia

The amendments to the Medicaid Act require states to screen residents of nursing homes for developmental disabilities to see if their needs can be served within the community or less restrictive methods than at a nursing home. It also requires states to provide “specialized services and intensive treatment” so developmentally disabled can live as independently as possible and to prevent regression or loss of abilities.

"Each (of the lead plaintiffs) is able and would prefer to reside in a more integrated, community-based placement," the latest version of the lawsuit, filed earlier this year, states. "Nevertheless, the individual plaintiffs and thousands of similarly situated individuals in Texas are unnecessarily institutionalized and segregated in nursing facilities because of the defendants’ decision to exclude them from any meaningful access to Texas’s system of community-based services and supports which they need to be able to reside in the community."

Kentucky - Dragging Of Boy With Autism Not Isolated, Advocates Say
by Valarie Honeycutt Spears, Lexington Herald-Leader via Disability Scoop, October 18, 2018

As national television networks have been airing the video of staff at a Lexington school dragging a student with autism in hallways, advocates are expressing concern, saying similar situations occur across Kentucky.“There are a lot of teachers that are doing really good work in Kentucky,” said Jeff Edwards, director of Kentucky Protection and Advocacy, the state’s disability rights organization.

But Edwards added, “there are similar incidents I would feel certain occur daily across Kentucky where people are putting their hands on them (students with disabilities) unnecessarily and making situations worse.”

Edwards said Kentucky Protection and Advocacy is monitoring the incident in which a video shows a nonverbal sixth grader with autism at Lexington’s Tates Creek Middle School dragged through the hallways by a teacher and school nurse after he refused to leave the gymnasium in September.

Fayette County Public Schools spokeswoman Lisa Deffendall said last week that the teacher shown in the video, released through a Kentucky Open Records Act request, is no longer with the school district. Kevin Hall, a spokesman for the Lexington-Fayette County Health Department said the school nurse is on paid leave while an investigation into the incident continues.

The child’s mother, Jo Grayson, earlier told the Lexington Herald-Leader that her son sustained cuts and bruises while being dragged down the hallway.

Kansas - Thousands of Kansans with Disabilities Wait Years for Services
By Natalie Davis, KWCH-12TV, October 14, 2018
Wichita siblings Philip and Katie Cole both have Fragile X Syndrome. Their mom Jennifer Cole gets them involved in as much as she can, like singing, theater, and outdoor activities such as walking and biking. However, she worries about what will happen long-term.

Cole has spent years trying to get Katie and Philip off the waiting list for Home and Community Based Services (HCBS) under KanCare.

Those services vary depending on the individual needs of the person. In-home supports may include personal care services. There are also day programs that support work and community involvement to help people go grocery shopping, go to the movies, or go to church. Other supports include group homes, job coaching, or overnight respite, to name a few. The idea is to help people with disabilities remain in the community and to give relief to their caregivers.

Data from the Kansas Department for Aging and Disability Services (KDADS) shows more than 24,000 people are eligible to receive HCBS. The state breaks down HCBS waivers into seven different categories:

• Autism
• SED (Serious Emotional Disturbance)
• TA (Technology Assisted)
• FE (Frail Elderly)
• TBI (Traumatic Brain Injury)
• PD (Physical Disability)
• I/DD (Intellectual and Developmental Disability

The most recent data from August 2018 shows 3,761 people with intellectual and developmental disabilities (I/DD) are on the wait list.

Center-Based Employment:

Opinion - The Gifts of the Sheltered Workshop

By Thomas Spellman and Dona Palmer, via Dave Kassel and the COFAR Blog, October 14, 2018


Before we present the gifts of the “Sheltered Workshop,” let us take a step back and look at the big picture. What we see among Sheltered Workshop participants is a continuum, from mild to severe brain impairment.

While these individuals are all disabled, their needs differ significantly. A major contributing factor is behavior. While behavior is not a disability in and of itself, it can be a complicating factor in the employment of a disabled individual and in their life in general.

While the ability to “work” varies significantly among persons with brain impairment, behavioral issues and physical disability, those persons must do work that is meaningful to them. Whether it is just a smile or it is working for General Motors, the work must be meaningful to the person doing it.

As we all know, each person with a disability (or their guardian) has the right to choose where they “work” and where they live. This is a foundation of the Americans with Disability Act (ADA).

While the right of each person to choose is important, it is equally important that a variety of work experiences be available that address the varied needs of all of those individuals who are disabled. Sheltered Workshops must be available to those with disabilities, cognitive impairment, physical challenges, and behavioral issues.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
VOR Supports H.R. 6611

This bill would define individuals with intellectual and developmental disabilities as a medically underserved population, and appropriate more funds to their care. The bill will expand and improve health care and dental services for people with I/DD. Stay tuned for more information on this bill.

VOR Supports H.R. 3325

Advancing Care for Exceptional Kids Act or the ACE Kids Act

This bill amends title XIX (Medicaid) of the Social Security Act to establish a state Medicaid option to provide for medical assistance with respect to coordinated care provided through a health home (i.e., a designated provider or team of health-care professionals) for children with medically complex conditions. A state shall make payments for such health-home services regardless of whether they are provided through a fee-for-service or managed-care system. For an initial period of eight fiscal-year quarters, the federal matching rate applicable to such payments shall be increased by 20 percentage points, not to exceed 90%.

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VOR's 2019

June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.

Plan now!
This will be an important year for I/DD advocacy
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