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?

Continued

VOR's FALL MEMBERSHIP CAMPAIGN

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.

ACTION ALERT!

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.

Please Click Here To Contact Your Representative:

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.”

Continued

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.”

Continued

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.

Continued

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

Introduction

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.

Continue to editorial

“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.

H.R. 6611 is available to view here

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%.

Text of the bill is available here

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To shop at AmazonSmile simply go to smile.amazon.com from the web browser on your computer or mobile device. Fill in the form and select "VOR - Elk Grove Village".

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Calendar

SAVE THE DATE!

VOR's 2019

ANNUAL MEETING & LEGISLATIVE INITIATIVE

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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