March 29, 2019
US Capitol - March 20,2019

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

VOR & YOU:
The thing that stands out in my mind about attending the VOR Conference is the great fellowship and sharing of information from other states. We all face the same hurdles. We share the tears and the laughter. The camaraderie is amazing. We meet so many people from across the country. We have new members and members who have been attending for years and we all come together one time a year to build up and strengthen each other. From induction of Board members to dinner at the Dubliner. The congressional visits are exciting and exhausting! It’s a great connection! Our strength is in numbers. Come join us this year at the annual conference in D.C.!
-- Rita Hoover, Maumelle, AR
VOR's 2019
ANNUAL MEETING & LEGISLATIVE INITIATIVE
June 8 - 12, 2019
Hyatt Regency Capitol Hill - Washington, D.C.

~ Registration includes a one-year membership in VOR ~
$100 per person if paid by March 31, 2019
$125 per person if paid by April 30, 2019
$150 per person if paid after May 1, 2019
 
All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C.




Note: Mail in Registration is slow. We recommend registering online.

Additional donations to help defray the event’s costs are always appreciated

Sponsorship Opportunities Are Available!
If you are unable to attend, or if you or your family association would like to support our conference, you can help by becoming a sponsor
Need a roommate for the conference?
Contact us at info@vor.net and we will try to help!
HOTEL INFORMATION
Hyatt Regency Capitol Hill      400 New Jersey Ave, NW    Washington, D.C.    20001

We have a bloc of rooms available for conference attendees. The VOR Group rate is $259 for single or double rooms, plus tax, per night. Larger rooms & suites are also available.

To make your reservations online, go to:
 
If you do not have internet access, c all 1-800-233-1234 and mention “VOR’s Annual Conference” when making your reservation.
National News:
Money Follows the Person (MFP) Passes in the House, Moves to Senate

Once again, members of the House in support of the renewal of the Money Follows the Person Rebalancing Program (MFP), Rep Brett Guthrie (R-AL) and Rep. Debbie Dingell (D-MI) have packaged their bill into a new, larger bill that includes several other Healthcare-related acts, and pushed it through the House, literally overnight. The new bill, H.R.1839, was introduced in the House by Rep. Raul Ruiz (D-CA) on March 21st and passed by a voice vote on March 25th. It now moves to the Senate. The bill will appropriate $20 million to MFP.

On March 22nd, VOR met with the Legislative Aides assigned to the offices of Rep. Guthrie and Dingell. They listened politely for a half hour, while being told of the harm this bill would bring to the most vulnerable, most severely disabled members of the IDD community, but said nothing about the new bill that had been introduced the previous day.

This says a lot about the value our elected officials place on our families, and our loved ones with Intellectual and Developmental Disabilities.


Trump Backs Off Plan To Defund Special Olympics
By Michelle Diament, Disability Scoop, March 29, 2019
After his education secretary spent three days fiercely defending a plan to eliminate federal funding for Special Olympics, President Donald Trump reversed course.

Trump told reporters late Thursday that his administration will support continued federal funding of Special Olympics.

Earlier this month, the president proposed wiping out $17.6 million in funding for the organization in his budget request for the fiscal year starting in October.

The issue came front and center this week when Secretary of Education Betsy DeVos testified on Capitol Hill about the budget request. Members of Congress singled out the administration’s plan to end funding for Special Olympics, calling the move “appalling” and quizzing DeVos about how many kids would be impacted.

“We had to make some difficult decisions with this budget,” DeVos told lawmakers.

The person who did should get “a Special Olympic gold medal for insensitivity,” Sen. Dick Durbin, D-Ill., responded.

Opinion: Why Betsy DeVos' Proposal To Defund Special Olympics Is Problematic On Every Level
By Sarah Kim, Forbes, March 27, 2019

On Tuesday, Secretary of Education Betsy DeVos announced her plan to cut $17.6 million in federal funding from the Special Olympics. Since then, celebrities, politicians and activists have taken to social media to rebuke her proposal. This cut is a part of $7 billion budget reductions set to take place in 2020. If this wasn’t enough, DeVos also proposed cuts to state-level special education programs, as well as initiatives for people with visual or hearing impairments.

The Special Olympics was founded in 1968 by John F. Kennedy’s sister, Eunice Kennedy Shriver, who has witnessed the paucity of opportunities in athletics that exist for people with intellectual disabilities. Her sister Rosemary lived with mental illnesses and disabilities. Today, the organization oversees more than 100,000 competitions for over 5 million athletes with cognitive difficulties.

In a world where people with intellectual disabilities are highly stigmatized against, the Special Olympics is one of the very few programs that foster acceptance and inclusion for this community. This organization serves as many as 200 million people with intellectual disabilities around the globe.

Opinion: Federal Bill Would Put Jobs Out of Reach for Severely Autistic Adults
By Jill Escher, National Council on Severe Autism,
March 28, 2019
My son Jonathan is a delightful nonverbal autistic 20 year-old man. Powerfully built, he has a supercharged energy and a deep well of affection for loved ones and his iTunes library. But Jonny is also profoundly intellectually impaired. Accomplishing even simple tasks requires vigorous prompting and continuous oversight, and chances are that along the way he might bite, stand on, or even throw his chair. As muscular and lovable though he may be, his chances of landing a competitive job are exactly zero.

Nevertheless I can envision that some day Jonny could participate in a disability program engaging in simple but important work (albeit with hawk-like oversight and prompting), perhaps boxing or moving heavy objects, or picking up garbage. But under a federal bill introduced in January, Jonny’s hope for future wage-earning would be thoroughly trashed. 
Everybody should have access to work, but a new bill, based on the fantasy that all intellectually disabled adults could achieve competitive employment, would trash cherished job programs for the severely disabled.

The Transformation to Competitive Employment Act (TCEA) (S. 260 and H.R. 873) would, over a period of six years, completely phase out disability-specific sub-minimum wage programs, even those serving the severely cognitively disabled who would otherwise be unable to access work. The bill would also provide a grant program to help expand capacity for those capable of achieving competitive employment.

Is ‘Special Needs’ the New ‘R-Word’?
By Ellen Stumbo, Good, March 26, 2019
For the last 10 years, the Special Olympics have campaigned to end the use of the word “retard” and “retarded.” Its “Spread the Word to End the Word” emphasizes the hurt the “r-word” causes people with intellectual disabilities.

Thanks to the Special Olympics, many people now know that saying the r-word is not acceptable. Since the campaign began in 2009, more than one million people have taken the pledge to stop using the r-word.

Unfortunately, other words have now replaced the r-word. We have not eliminated the r-word. It has simply changed and morphed into something else, replaced with the derogatory use of terms like ‘special needs’ and ‘sped.’

Just a few days ago, I was talking to my oldest daughter, who is in middle school, and she said
she rarely hears the r-word at school. Shocking, right? Except she said it’s because now kids call each other “sped.”

If you are wondering what “sped” means, it is the abbreviation for “special education.” Just because kids aren’t using the r-word, doesn’t mean they haven’t replaced it with other words that are meant to diminish people at the expense of those with intellectual disabilities.

State News:
Massachusetts - Ed Orzechowski receives the Ricci Award, Calls for Memorial to Residents of Former Belchertown State School
By Dave Kassel, The COFAR Blog, March 22, 2019
Ed Orzechowski, a former COFAR vice president, accepted the 2019 Dr. Benjamin Ricci Commemorative Award on Wednesday, and called for the establishment of a “lasting memorial” at the former Belchertown State School.

The annual Ricci award celebration recognizes the accomplishments of individuals served by the Department of Developmental Services, and the dedication of caregivers and advocates.

“I urge the Department of Developmental Services, the Legislature and local officials to create a lasting respectful memorial, a tangible commemoration to all the living and deceased former residents of Belchertown and the other institutions,” Orzechowski said in accepting the award. “What they (the Belchertown residents) experienced, what they endured, must not be forgotten.”
Ed Orzechowski is a long-time member of VOR, and State Coordinator for Western
Massachusetts .

Orzechowski authored “You’ll Like it Here,” a gripping book published in 2016 about the life of Donald Vitkus, a one-time resident of the former Belchertown State School.

Orzechowski’s book chronicled Vitkus’s childhood in the 1950s at Belchertown, which was then notorious for its inhumane and unsanitary conditions. The book also described Vitkus’s battle throughout the rest of his life to come to terms with his past at Belchertown.

In addition to serving for many years on COFAR’s Board, Orzechowski was president of the Advocacy Network, a former advocacy organization for the developmentally disabled in western Massachusetts.

New Jersey - West Milford Neighbors say they are being 'Terrorized' by Escaped Group Home Patients
By David M. Zimmer and Gene Myers, North Jersey Record, March 22, 2019
In a heavily wooded region of West Milford, just north of the Appalachian Trail and a short distance from the New York border, residents of a high-income, bucolic 12-home neighborhood say they are being "terrorized" by patients who escape from their group home.

A naked man acting in a "belligerent and extremely aggressive manner" smashed four garage windows, damaged a door and ripped out a light fixture as he tried to break into one Longhouse Drive home last November, neighbors said.

Last week, the same patient "was banging his head, feet and arms" against the door of a home trying to gain entry, said one neighbor. That encounter turned violent when the resident tried to stop him
"People up here are scared to leave their homes and walk to their mailboxes," said Anthony Neglia, a neighbor of the group home.

The state Department of Human Services is investigating the incidents and the group home at 240 Longhouse Drive. Run by Bellwether Behavioral Health, the home was established for people in treatment programs for disabilities and psychological conditions. Some of the population has traits such as "aggression, self-injurious behavior, sexually inappropriate behavior, fire setting, property destruction," according to the company website.

218 Kentucky Workers Who Serve Adults With Disabilities Will Lose Their Jobs
By Grace Schneider, Louisville Courier Journal, March 25, 2019

BrightSpring Health Services will lay off 218 people after the state canceled a management contract and a provider certification for serving adults with intellectual disabilities.

The company, formerly known as ResCare, notified 125 employees at Bingham Gardens on Crums Lane in Louisville that the Kentucky Department for Behavioral, Developmental and Intellectual Disabilities intends to switch its management contract to Lexington-based Bluegrass.org.

Separately, BrightSpring informed the Kentucky Labor Cabinet it will permanently lay off 93 employees at Community Alternatives of Kentucky, headquartered at 180 Mercury Blvd. in Somerset.

No replacement provider is being disclosed now because an appeal of that termination still may be filed, Doug Hogan, spokesman for the Kentucky Cabinet for Health and Family Services, said in an email.

California - People with Disabilities Lose as Programs Shrink or Close in Costly Bay Area
By Catherine Ho, San Franicisco Chronicle, March 18, 2019
At its peak, the adult day program at Pathway to Choices in San Rafael hosted art, music and other behavioral therapy classes five times a week for 20 Marin County residents with intellectual and developmental disabilities like autism and Down syndrome.

But last fall, owner and CEO Juan Velasquez had to shut the program down because the $15,000 a month in operating costs, mostly rent, became too much to sustain. It also got nearly impossible to find workers to staff the program for $15 an hour when they could earn more at nearby fast-food or retail jobs, he said.
“The overhead was way too much,” Velasquez said. “Finding staff is so hard. Right now some of them have two jobs in order to pay rent.”

Velasquez’s East Bay firm still runs similar programs out of locations in Pinole and Sacramento, but the closure in San Rafael meant clients had to seek the services elsewhere — putting a strain on the few remaining day programs in the area.

California - Proposed CA State Bill aims to Protect Special Needs Students after El Dorado Hills Death
By Sawsan Morrar, Merced Sun-Star, March 25, 2019
A state bill aimed at protecting special needs students at nonpublic schools was introduced Monday in response to the November 2018 death of a student who was restrained at his El Dorado Hills school.

Assemblyman Jim Frazier, D-Discovery Bay, authored AB 1172 to expand local and state oversight of all nonpublic schools and how they operate.

The Guiding Hands school is still under investigation following the death of a 13-year-old student with autism. Max Benson died after being placed in a face-down restraint for one hour and 45 minutes by school staff.
The California Department of Education revoked the school’s certification just before it completed its investigation. The El Dorado County Sheriff’s Office is still investigating and the school closed in January, claiming it couldn’t financially survive after local school districts pulled most of their students out.

Nonpublic schools, like Guiding Hands, are generally private, nonreligious schools that contract with local school districts or the county office of education to serve students with special needs.

Editorial: The Cost of Caregiving in New York State
The Buffalo News Editorial Board, March 24, 2019
As the pace of Albany’s budget negotiations quickens and state officials governor work to close a $2.3 billion hole, critical funding priorities remain. One involves the plight of direct support professionals and the not-for-profits that hire them.

That group is asking for $55 million more in statewide funding to increase hourly pay from minimum wage standards to living wage. Average salaries for direct support professionals would be $17.72 in the New York City/Long Island region and $15.54 in other parts of New York.

Direct support professionals argue persuasively that they are the “linchpin of the system of support for more than 130,000 people with developmental disabilities in New York.” More than 110,000 direct support professionals, 97,000 of whom work for nonprofit agencies, enable those they benefit to live better lives.
The problem is the money. Advocates make a fair point when they say that the demands of the job far exceed the pay, with hourly wages between $11.10 and $14.60.

One of the unintended consequences of state minimum wage policies and a tight job market is that direct service professionals can make more money at a fast food restaurant or in retail, for example, where managers and owners increase may wages $2 to $3 an hour to attract workers.

VOR Bill Watch:
There are currently eight bills in Congress (four in the House of Representatives with companion bills in the Senate) that would discriminate against the more disabled members of the IDD community. We are following them closely, and over the next few weeks/months may ask our members to sign on to Action Alerts to share our objections with our elected officials. (Click on each bill to view details)

H.R. 1839 - This bill has provisions to extend the Money Follows the Person Rebalancing Program , which has been used as a tool to remove people from ICFs with the intention of shuttering the facilities. MFP has been renewed for first three months of this year. The new bills would renew it for another 5 years.

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. Bot 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?

Contact us at info@vor.net
Calendar
VOR's 2019
ANNUAL MEETING & LEGISLATIVE INITIATIVE

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




Note: Mail in Registration is slow. We recommend registering online.

Additional donations to help defray the event’s costs are always appreciated

Sponsorship Opportunities Are Available!
If you are unable to attend, or if you or your family association would like to support our conference, you can help by becoming a sponsor
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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