May 10, 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


Once again, the organizations that oppose a full continuum of care, that oppose your family's right to choose an intermediate care facility for your loved one if you deem it the most appropriate form of residential care, and who seek to pass laws making their choices the only options available to anyone with I/DD, are at it again.

Once again, we ask you to take action, to help your loved ones, our loved ones, our families to protect a full range of choice, a full range of services for people with intellectual and developmental disabilities.

We know that you have signed these forms before, but we need you to do it again. The Disability Integration Act is gaining serious momentum in the House of Representatives.
The Spring Issue of the VOR VOICE
is now available for download
on our website!
Conference Speakers - June 9th Legislative Initiative:

Melissa Stone - Director, Division of Developmental Disabilities Services, Arkansas Department of Human Services

Amy Lutz - National Council on Severe Autism, EASI Foundation

James Edmondson, M.D. PhD. On Medicaid Managed Care
VOR's 2019
June 8 - 12, 2019
Hyatt Regency Capitol Hill - Washington, D.C.

~ Registration includes a one-year membership in VOR ~
All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C. 20001

Note: Mail in Registration is slow. We recommend registering online.
Additional donations to help defray the event’s costs are always appreciated



or bring your pre-printed reports to the conference

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, click here or 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.


Can't Attend the Conference This Year?

You can help by donating to VOR
or by becoming a Legislative Initiative Sponsor

Your donation will help defray the costs of this year's conference
and ensure our success sharing our stories with one another and with our legislators on Capitol Hill.
National News:
Fitzpatrick’s Bill Ramps Up Health Benefits for People with Intellectual, Developmental Challenges
By Ripon Advance News Service, May 3, 2019

U.S. Rep. Brian Fitzpatrick (R-PA) is cosponsoring a bipartisan bill [with U.S. Rep. Seth Moulton (D-MA)] that would designate Americans with intellectual and developmental disabilities (IDD) as medically underserved, a change that would make them eligible for more health care benefits.

“Everyone deserves access to quality health care, especially those with intellectual and developmental disabilities who have been underserved for too long,” Rep. Fitzpatrick said on Wednesday.

Rep. Fitzpatrick on April 30 introduced the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act of 2019, H.R. 2417, with bill sponsor U.S. Rep. Seth Moulton (D-MA).

“I’m proud to join Congressman Moulton to introduce this measure to help those with intellectual and developmental disabilities live healthy lives,” said Rep. Fitzpatrick.

If enacted, H.R. 2417 would direct the U.S. Health Services and Resources Administration (HSRA) to make the new designation for people with IDD, according to Rep. Fitzpatrick, and would incentivize new research while authorizing better reimbursement rates for providers.

Overall, the designation change would open up more than 25 government programs within HSRA and other federal agencies for participation by the IDD population, the congressman said.

Brian Fitzpatrick (R-PA)
Seth Moulton (D-MA)
Autism: A Medical Condition or just a Difference? The Question Roils Autism Community
By Alisa Opar, The Washington Post, May 6, 2019
On one side are parents of autistic children with severe traits — including intellectual disability, limited language ability and self-harm — who say autism is a medical condition that needs often-intense treatment. On the other side are supporters of “neurodiversity,” who maintain that the condition represents a neurological difference and a disability — one that society should accept and accommodate rather than try to prevent or cure.
Many people trace the beginning of the neurodiversity movement to an open letter read at the 1993 International Conference on Autism by Jim Sinclair, who was diagnosed with autism as a child. “It is not possible to separate the person from the autism,” he said, addressing the desire by many parents for a cure and the impact it can have on their child. “Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.’ ”

At the time, there were escalating calls for an autism cure, as the prevalence of autism in the United States had jumped more than tenfold from the 1980s to the 1990s. This rapid increase was in part because of expanding definitions of the condition. But the media nevertheless portrayed autism as an epidemic, and scores of parents took up advocacy work for their autistic children.

Then those children grew up — and they didn’t necessarily agree with their parents’ views of autism, says Ari Ne’eman, who co-founded the nonprofit Autistic Self Advocacy Network in 2006. “When the organization was formed, there was an unprecedented amount of public discussion about autism but no representation of autistic people in that conversation,” he says.
These autistic adults amplified the neurodiversity movement, and won greater recognition of the differences between autistic and neurotypical people: Many companies, for example, are now dedicated to hiring autistic employees.

But some parents say that as autistic self-advocates have become more vocal, their perspective is drowning out the voices of autistic people who cannot speak for themselves. In January, some of these parents banded together to form the National Council on Severe Autism, the first advocacy organization to focus exclusively on the needs of autistic people who require high levels of support.

“There’s a wide abyss between someone who is very mildly impaired and someone who is really severely impaired with intellectual disability and all the different kinds of comorbid conditions that tend to cluster at that end of the spectrum,” says Amy Lutz, a founding member of the organization and mother of Jonah, 20, who has severe autism and is prone to aggression and self-harm. “There’s no one speaking directly for these families and about this severe end of the spectrum.”

NOTE: NCSA's Amy Lutz is one of the featured speakers at VOR's annual conference in Washington D.C. this year.
Are Managed Care Providers Wrongly Denying Services To People With Disabilities?
By Shaun Heasley, Disability Scoop, May 6, 2019
As more states turn to managed care to administer Medicaid, federal investigators are set to examine whether these companies are offering people with disabilities the care they’re entitled.

The U.S. Department of Health and Human Services’ Office of Inspector General said it will investigate whether managed care organizations are wrongly denying services.

Many states have turned to private insurers to handle their Medicaid services, including those for people with developmental disabilities. Under the arrangements, states pay insurers a set amount of money to administer benefits.

“The contractual arrangement shifts financial risk for the costs of Medicaid services from the state Medicaid agency and the federal government to the MCO, which can create an incentive to deny
beneficiaries’ access to covered services. Our review will determine whether Medicaid MCOs complied with federal requirements when denying access to requested medical and dental services and drug prescriptions that required prior authorization,” the HHS inspector general said in announcing the plan to investigate.

The move comes at the request of Sen. Bob Casey, D-Pa. In a letter to HHS Inspector General Daniel R. Levinson last month, Casey cited reports from the Dallas Morning News and the Des Moines Register suggesting that some managed care companies have wrongly denied needed care.

State News:
Tennessee will Test CMS' Willingness to Block-Grant Medicaid
By Harris Meyer, Modern Healthcare, May 7, 2019
Tennessee Republicans will test the Trump administration's willingness to radically restructure Medicaid by turning it into a state block grant program.

The GOP-led Legislature passed a bill last week ordering the governor to submit a Section 1115 waiver request within six months. The waiver would seek federal approval to transform TennCare, the $12 billion Medicaid program covering 1.3 million Tennesseans, from an open-ended entitlement program to one where the federal government makes fixed payments.

Tennessee Republican Gov. Bill Lee has indicated he will sign the bill.

Tennessee is following Utah, which in February passed a bill mandating the governor to submit a waiver to the CMS establishing a per capita cap on federal Medicaid payments to the state.
Both bills are in line with the Trump administration's stated desire to encourage states to experiment with a capped federal payment system to constrain Medicaid spending growth.

The CMS reportedly is drafting guidance on how to design a capped spending model.

Beyond that, President Donald Trump's proposed budget would restructure Medicaid as a block grant or per-capita cap program, while cutting federal Medicaid funding by $1.48 trillion over 10 years.
Other Republican-led states, such as Alaska and Georgia, also have expressed interest in such waivers.

Supporters of the block grant approach argue it will enable states to design more efficient Medicaid programs that provide better benefits, cover more people and save money.

"If we can remove some of the red tape and regulation Medicaid has, we'd be able to free up more of our federal dollars to provide more services for individuals," said Sen. Paul Bailey, a Republican sponsor of the bill.

But opponents, including providers and patient advocacy groups, warn that capped models like block grants or per capita caps would lead to reduced Medicaid funding over time and require states to cut enrollment, benefits and payment rates.

"I don't think people understand what we're getting into," said Sen. Richard Briggs, a Republican and cardiothoracic surgeon. "Why put the good fiscal management of our state in jeopardy with an experimental block grant program no one in the country has tried before?"

He and others say it could cause more rural hospitals to close in a state where 12 have been shuttered since 2012.

The Tennessee Hospital Association said in a written statement that a block grant program could "threaten TennCare benefits, enrollment and reimbursement to hospitals and providers."

The CMS declined to comment.

New Mexico: Criminalizing Disability: Special-needs Kids who Don’t Get Help in School are Winding up in Jail
By Ed Williams, Searchlight New Mexico, May 10, 2019
It was right after the fifth-period bell last October that Sebastian Montano lay face down in the grass outside Alamogordo High School, screaming for his mother, as two police officers pinned him to the ground and thrust a Taser in his back.

Moments earlier, a staff member had called police after learning that the 16-year-old, a special needs student who’d recently dropped out, was now trespassing on school grounds.

A shy teenager with light brown hair and big green eyes, Sebastian was well known to staff and students at Alamogordo High. He had a long and messy school history, including 16 documented run-ins with school police officers — all in relation to behaviors associated with his disabilities: autism spectrum disorder, bipolar disorder, anxiety disorder, PTSD, epilepsy, and ADHD.

But he was also a boy who showed great promise. He tested in the superior range in math and was considered something of a genius when it came to electronics. He understood the internal circuitry of complex gadgets with casual ease; his classmates would often hand him their broken smartphones to fix. When he was in seventh grade, he disassembled his mother’s laptop and melded it
with the innards of an Xbox gaming console, creating his own portable gaming system.

With the right support, he might have been on his way to a career as an electrician or even an engineer. Instead, he was now another special needs student swept up in the school-to-prison pipeline.

Alamogordo Public Schools, a district of 6,400 students spread over 15 schools, far exceeds the state average for student referrals to law enforcement, according to the most recent federal data. In the 2015-‘16 school year, such referrals were nearly double the corresponding number in Las Cruces, a neighboring district that is four times the size. In the 2013-‘14 school year, Alamogordo schools referred many more students to police than did the state’s largest district, Albuquerque Public Schools. Though special needs students made up only 12 percent of Alamogordo High School’s population in 2015, they represented 25 percent of the school’s referrals to law enforcement.

Illinois: He Gave Them a $1.1 Million Taxpayer-Funded Contract. Then He Went to Work for Them.
By Kavahn Mansouri, Belleville News-Democrat, May 07, 2019
A former state employee was fined by the Illinois Executive Ethics Commission for not disclosing consulting work he did for a company to which he had also award a state contracts.

Mark Doyle, a former Illinois Department of Human Services employee tasked with the closure of the Warren G. Murray Center in Centralia, was fined $154,056 for violating the state’s revolving door law.
The fine is equal to the compensation he received from Georgia-based Community Resource Associates, Inc., which is run by Derrick Dufresne, an acquaintance of Doyle’s. The two have known one another for more than 30 years, according to the ethic’s commission’s findings.

Doyle played a “substantial” part in hiring CRA to assist with closing closing the Murray Center and facilities like it.

His job at IDHS was to oversee the closing of Murray Center, Illinois’ only state-operated facility for people with behavioral and medical needs. It remains open, serving roughly 300 residents.
Doyle was offered a job at CRA in January 2015 and submitted a revolving door determination request to the ethics commission, which determined he could not accept the position due to his part in awarding them a $1.18 million contract.

The Executive Ethics Commission found that Doyle “brought CRA to the table and made a strong case as to why DHS should select them.” The findings stated that Doyle “enthusiastically encouraged” the Division of Developmental Disabilities to consider looking at the firm as a possible option.

After leaving the department, Doyle took the job with CRA, ignoring state law by accepting the consulting position less than 90 days after leaving his position with the state. He received $154,056.10 for his consulting with CRA between June 1, 2015 and February 15, 2016, which he received through a “conduit” subcontract with a company called BennBrook.

He has been ordered to pay all of his earnings back to the state.

In Memorium:
Jean Vanier Dies, Aged 90
By Eno Adeogun. Premier, May 7, 2019
The Canadian philosopher Jean Vanier has died aged 90 in the Jeanne Garnier medical centre in Paris.

The academic was the founder of of L'Arche, an organisation described as a revolutionary international network of communities where people with and without disabilities live and work together as peers.

"Jean has left an extraordinary legacy," L'Arche international leader Stephan Posner said in a statement.

"His Community of Trosly, the Communities of L'Arche, Faith and Light, many other movements, and countless thousands of people have cherished his words and benefited from his vision."

Mr Vanier, who was a Catholic, founded L'Arche in 1964 in response to the treatment that people with learning disabilities faced in institutions.

He spent a lifetime reshaping society's views on the value of disabled people and was recognised for his work.

In 2015 he was awarded the Templeton Prize, picking up a cheque for £1.1 million.

Shortly after nomination of the prestigious prize, he told Premier how he sees Jesus in the daily life of the community he built: "It's a question of loving people as they are.
"Not just people with disabilities but also the assistants [L'Arche's volunteers].

"The whole vision of Jesus is just to 'love one another as I have loved you'.

"To love people is not to do things for them, but to reveal to them that they have value. There's a person under the abilities and the disabilities - that's the heart."

VOR Bill Watch:

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. 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 [email protected]
VOR's 2019

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
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