May 3, 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

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 ~

$125 per person if paid by May 5, 2019
$150 per person if paid after May 5, 2019
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

Need a roommate for the conference?
Contact us at [email protected] and we will try to help!
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
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 Save 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 censure our success sharing our stories with one another and with our legislators on Capitol Hill.
Family, experts, advocates at the April 30 Hearing before the Pennsylvania Human Services Committee - "Open the Doors to Dignity" Making the Case for a Full Continuum of Services
for the Severely and Profoundly Disabled
Left to right: Irene McCabe, Polk Center, Friends & Families; Susan Jennings, VOR, White Haven Center Relatives & Friends Member & KIIDS President; Dr. Lee Wachtel, Medical Director at Kennedy-Krieger; Amy Lutz of EASI and National Council on Severe Autism; Rep. Gene DiGirolamo, PA House Human Services Chairman; Trudy Sheetz, Selinsgrove Center Friends & Families, and member of KIIDS; Patty Degen, White Haven Center family member; Mary Wills, Ebensberg Center, ACE President; Hugo Dwyer, VOR Executive Director; and Tom Kashatus, White Haven Center Relatives & Friends, President.

Open The Doors To Dignity

VOR Board Member Susan Jennings, Founder of KIIDS (Keeping Individuals with Intellectual Disabilities Safe - brought advocates of Intermediate Care Facilities to the Pennsylvania state capital in Harrisburg for a hearing on opening PA's ICFs to new admissions.

Two years ago, when former Governor Tom Wolf and the Secretary of the State Department of Human Services, Ted Dallas, announced their intention to close Pennsylvania's Hamburg Center, there was no organization in place to fight the closure. There was no one group uniting the various family groups at the state's remaining ICFs with one another and with other organizations within the state.

Enter Susan Jennings. With the help of VOR, its members, state coordinators, and support from her husband Richard, Sue created her own state-wide organization KIIDS, and worked tirelessly to unite the disparate groups and individuals who support ICFs in Pennsylvania in order to re-open their doors to new admissions. On April 30th of this year, her work began to pay off. A hearing was held by the State House of Representatives to discuss the value of the ICFs and the prospect of admitting new individuals requesting ICF care.

Full testimony of the April 30, 2019 hearing is available here (

National News:
Feds Urged To Give Disability Employment Rules A Second Look
By Michelle Diament, Disability Scoop, May 2, 2019
Republican lawmakers are pushing the U.S. Department of Education to reconsider regulations that transformed the transition from school to work for people with disabilities.

In a letter to Secretary of Education Betsy DeVos last month, eight GOP members of Congress said that rules established during the Obama administration should be revisited. The regulations clarify how the federal Workforce Innovation and Opportunity Act should be implemented.

Under the 2014 law, individuals with disabilities ages 24 and younger are required to pursue competitive integrated employment before working at jobs paying less than minimum wage.

Individuals with disabilities already working for what’s known as subminimum wage can continue to do so, but must receive regular career counseling and information about training opportunities.
Last year, the Education Department said it planned to “amend” the regulations. Most recently, a fall agenda indicated that the agency would issue a notice of proposed rulemaking in January, but that never materialized.

Now, the House lawmakers are urging DeVos to move forward citing “ongoing problems with the implementation of some aspects of the law.” In their correspondence, they say that the Obama administration used “imprecise criteria” to define what qualifies as “integrated settings” which has led some state vocational rehabilitation agencies to stop referring people with disabilities to certain employers rather than making case-by-case determinations.

Study Suggests Kids Should Be Screened Earlier For Autism
By Michelle Diament, Disability Scoop, April 30, 2019
New research indicates that autism can be reliably diagnosed in children months before pediatricians conduct routine screening for the developmental disorder.

A study looking at over 1,200 kids finds that an autism diagnosis made by a trained professional is accurate starting shortly after a child’s first birthday.

“Our findings suggest that an ASD diagnosis becomes stable starting at 14 months, and overall is more stable than other diagnoses, such as language or developmental delay,” said Karen Pierce of the University of California, San Diego who led the study.

The research published this week in the journal JAMA Pediatrics showed that the stability of an
autism diagnosis was weakest when children were evaluated at ages 12 to 13 months. Among kids diagnosed at that age, only 50 percent were still on the spectrum when they were re-evaluated a few years later.

However, the autism label stuck in 79 percent of kids diagnosed at 14 months and 83 percent of those flagged at 16 months, the study found.
Currently, the American Academy of Pediatrics recommends that all children be screened for autism at 18 and 24 months.

Trump Administration Pushing States To Make Medicaid Changes
By Courtney Perkes, Disability Scoop, April 29, 2019
Medicaid funding for people with disabilities could be jeopardized if a handful of states succeed in their efforts to overhaul how they receive federal dollars, advocates say.

At least three states, including Alaska, Tennessee and Utah, have indicated that they are interested in receiving block grants or per capita funding from the Centers for Medicare and Medicaid Services.

Currently, states receive matching funds from the federal government without a pre-set limit. If states depart from that approach, they would gain greater flexibility on how to spend the money in exchange for accepting a fixed amount, regardless of actual

But disability advocacy groups say they are concerned that such a shift would not provide adequate funding for people with disabilities who receive health care or home-and community-based services through Medicaid.

“These proposals often don’t think about the disability community — more people being moved into community services, more technology needs, more focus on person-centered plans — and the costs that go along with making those dramatic shifts,” said Esme Grewal, vice president of government relations at the American Network of Community Options and Resources, or ANCOR.

President Donald Trump’s budget proposal last month called for deep cuts to Medicaid and the establishment of block grant funding. In 2017, Congress failed to pass legislation that would implement block grants and now some advocates say the Trump administration may be circumventing lawmakers to accomplish that goal.

For instance, in Alaska, Gov. Michael Dunleavy wrote a March letter to Trump saying that CMS Administrator Seema Verma has urged Alaska to be the first state to receive Medicaid dollars as a block grant.

“We are eager to do this, but your support of her on this ‘first’ will keep the proper focus and speed on the application,” Dunleavy wrote.
In a statement, a CMS spokesperson said the agency does not comment on preliminary state discussions, but said states play an important role in fostering innovation in Medicaid program design and financing.

“We invite states to bring forward their best ideas, and we will evaluate them to ensure their compliance with the goals of the program,” the statement said.

Neither Dunleavy’s office nor Alaska’s Medicaid program responded to requests for comment.

“It’s a clear red flag when you hear that they’re opening up these kinds of conversations,” said Julie Ward, deputy executive officer for public policy at The Arc. “They weren’t able to accomplish these things through Congress. They’re just pushing the levers that they have the most control over, which is how far can you push regulatory change.”

Earlier this month in Tennessee, the state House of Representatives passed a bill that would direct the governor to seek a waiver from CMS to receive an annual, unspecified lump sum for its Medicaid program, TennCare. A fiscal analysis of the bill found that the level of federal funding was unknown. Current annual federal funding for TennCare is $7.5 billion.

Before the vote, the bill’s sponsor Republican Rep. Timothy Hill said the measure would “return Tennessee tax dollars to our citizens, reduce the cost of compliance and serve more people with existing dollars.” He added that the goal of the legislation was not to “cut services or cut folks from TennCare.”

State News:
Researchers: Medicaid Block Grants Would Hurt Ohio Kids
By Mary Schuermann Kuhlman, Public News Service of Ohio, April 30, 2019
Researchers say national talk of turning Medicaid into a block grant program could threaten health-care coverage for vulnerable kids in Ohio.

States currently share the cost of Medicaid with the federal government. With a block grant, states would get a set amount of money and would need to cover any differences if the program exceeded costs. Supporters say it would make the program more efficient.

At the Center for Community Solutions, researcher Loren Anthes countered states could end up restricting who qualifies or reducing services in order to save money.

"You suddenly are putting state policy makers and the state department of Medicaid into a very difficult position where they're making toxic tradeoffs between who is and who is not deserving,” Anthes said. “The most likely victims of that budget consideration are going to be the people with the biggest needs."

Medicaid covers more than 1.1 million Ohio children, and about 60 percent of Medicaid beneficiaries nationally who are younger than age 19 have a disability. Anthes said because they have higher health-care costs, services for
children with special needs would be the most susceptible to cuts.

He added the next target for cuts could be children - the second largest group for Medicaid expenditures.

Supporters contend block grants would give states flexibility with their Medicaid dollars, and perhaps the ability to address other enrollee needs, such as housing or food. Anthes said there are many drawbacks that should be considered.

"Before policymakers put forward something that may sound good, let's talk about this in terms of dollars, cents and in terms of your constituents, maybe your family members, and really try to outline what some of the impacts of these choices may be,” he said.

Anthes contended rather than experiment with access for children or others who rely on Medicaid as a way to control costs, it would be wiser to examine why prices are high in the first place.

Alaska: Senate OKs Budget, Rejecting Many of Governor's Big Cuts
By Erin McGroarty, Fairbanks Daily News-Miner, May 1, 2019
The Alaska Senate approved its version of the operating budget Wednesday afternoon, setting funding at $11.6 billion and rejecting many of Gov. Mike Dunleavy’s massive proposed cuts. The budget for fiscal 2020, which starts July 1, makes significant cuts of $259 million in state spending for government services.

A deficit of about $1.2 billion remains, however; 
the gap that will likely be filled through dollars taken from the state’s Permanent Fund earnings reserve. The deficit is due entirely to the $1.94 billion it would cost to pay each qualified Alaskan a full $3,000 dividend in October. 

Senate Finance Co-Chair Bert Stedman, R-Sitka, noted on the floor that the budget would have had a $700 million surplus if there were no dividend. Stedman clarified he was not proposing that option but felt the need to identify the numbers. 

Fully funding the dividend, Senate leadership said, will provide a negotiating point with House members, many of whom support a smaller dividend.
The Senate budget is only $2 million less than the operating budget approved by the House last month, but it is $735 million more than Gov. Mike Dunleavy’s proposed budget released in February.

A majority of the $259 million in cuts within the Senate budget are from state spending for the Department of Health and Social Services and Medicaid.

Health and Social Services was cut by $142 million, including $83 million from Medicaid. The other significant cuts include $44 million from the Alaska Marine Highway System, a contentious subject that sustained hefty debate Wednesday on the Senate floor, and $5 million from the University of Alaska budget.

Tennessee: After Closed-Door Talks, Lawmakers Agree to Fully Fund Medicaid Waiver for Disabled Children
Natalie Allison, Nashville Tennessean, April 29, 2019
Just days away from ending their legislative session, both chambers in the Tennessee legislature appear close to a consensus on a $38.5 billion budget, including fully funding a Medicaid waiver for disabled children.

While the Senate last week proposed funding only a portion of the Katie Beckett waiver program — citing concerns about the House's plan to use revenue from expanded online sales tax collection — a key Senate committee on Monday moved to fully fund the $27 million program through other revenue sources, along with the entirety of the House's budget.

"We were happy we were able to work it out," said Sen. Bo Watson, R-Hixson, chairman of the Senate finance committee, ahead of the committee approving the budget Monday afternoon.

"This finance committee worked incredibly hard to use existing financial resources to pay for Katie Beckett," he said. "Republicans and Democrats
worked together to make this happen for Tennessee and Tennessee's families."

Watson described the funding as an "incredible investment in health care."

House Speaker Glen Casada, R-Franklin, and other House GOP leaders had said they were committed to ensuring that complete funding for the waiver program would be in the final budget sent to Gov. Bill Lee. The House passed its budget on the floor last week.

The Senate's initial budget proposal allocated $15.6 million to the Katie Beckett program to cover 300 of the state's most at-need children, while leaving unfunded a second portion of the waiver that would provide coverage for roughly 3,000 more children who have fewer treatment requirements.

Massachusetts - Legislators and the Media should be concerned about Secrecy in Investigations of Abuse of Persons with Disabilities
By Dave Kassel, The COFAR Blog, May 2, 2019
A bill in the state Legislature, which would draw an ever-tighter cloak of secrecy around investigative reports on abuse and neglect of persons with disabilities in Massachusetts (H.117), appears to be going relatively unnoticed on Beacon Hill and by the media.

Section 17 of the bill would effectively exempt all investigative reports and records of the Disabled Persons Protection Commission (DPPC) from public disclosure. Under the section, the DPPC’s records could be kept entirely secret even if all personal information in them were redacted.

At a certain point, laws and other initiatives that are ostensibly enacted or undertaken to protect .privacy cross the line into secrecy and provide a
curtain for agencies to hide behind. That is what we think is happening with Section 17 of this bill

The DPPC is the state’s only independent agency charged with investigating allegations of abuse and neglect of adults under the age of 60 with developmental and other disabilities. Without access to the agency’s investigative reports, the public will have much less understanding, not only of the scope and nature of the problem of abuse and neglect, but what the DPPC and other agencies are doing about it.

Dental Care for Individuals with I/DD:
California - For Those With Developmental Disabilities, Dental Needs Are Great, Good Care Elusive
By David Tuller, California Healthline, May 2, 2019
When Ava Terranove began feeling oral pain last July, her parents took her to her regular dentist. The dentist determined that Ava, who has an autism-like condition, needed two root canal procedures to treat infected teeth.

Because of her developmental disability, Ava, now 15, requires general anesthesia for non-routine dental work. The dentist, like most of his peers, was not equipped to provide it.

The girl’s parents, schoolteachers who live in Huntington Beach, Calif., called other dental offices in the region. They were turned down dozens of times before finally finding a dentist prepared to work with an anesthesiologist to treat their daughter.

But there was a hitch: Insurance would not cover general anesthesia for root canals. So Ava’s parents decided to pay the $2,400 from their
savings to ensure their daughter received prompt care.

“What about kids who don’t have parents who are professionals or who have no one to advocate for them?” wondered Donny Terranove, Ava’s father.

People with autism, cerebral palsy and other developmental disorders face enormous barriers to adequate and timely dental care — on top of their other challenges. Many dentists either avoid treating these patients or lack the skills needed to do so. Some patients with developmental disabilities are unable to endure even regular dental exams or cleanings without general anesthesia.

New York - Saving the Teeth of Patients With Special Needs
By Catherine Saint Louis, New York Times, May 2, 2019
Cheryl Closs, a mother of four from West Islip, N.Y., wanted to save her daughter Bella’s two front teeth. They were badly decayed, and one dentist wanted to just pull them out. But Ms. Closs was having none of it.

Bella, who is 15 and in 8th grade, has special needs and uses a wheelchair.

“They are quick to pull a child’s teeth that is special needs,” Ms. Closs said. So she began a search for a root-canal specialist. She would take Bella out of school for the day and her husband would drive them to whichever borough for a dental appointment. But they took Bella to at least eight dentists and root-canal specialists, all of whom declined to treat her. Some “didn’t even look at her teeth,” Ms. Closs said. “This has happened so many times.”

Bella favors pigtails and Wonder Woman T-shirts. She smiles a lot but doesn’t say much and doesn’t like being touched, let alone restrained. She has a genetic disease called fucosidosis, which is deteriorating her brain function. Getting an X-ray or having her teeth cleaned can be challenging, requiring more time or more hands on deck to hold her head or flailing arms.
And many dentists can’t — or won’t — treat patients with disabilities. Some cannot physically accommodate a large wheelchair, “or they don’t feel comfortable treating the patients,” said Dr. Rita Bilello, the dental director at Metro Community Health Centers in Brooklyn, Staten Island and the Bronx.

Historically, pediatric dentists were taught how to treat patients with special needs, but general dentists weren’t. That means a child with autism might get regular checkups, but not necessarily an adult.

However, in 2006, a new standard for dental programs went into effect. The Commission on Dental Accreditation mandated all students had to be able to competently assess the treatment needs of special-needs patients. But as of 2012, less than three-quarters of dental schools have predoctoral students actively involved in their treatment, according to a study in the Journal of Dental Education.

Illinois - Chicago Dentist Provides Free Services for Individuals with Intellectual and Developmental Difficulties
By Michael Heideman, WGN Radio, April 30, 2019
“The have given us more back then we could give to them” Dr. Alan J. Acierno works with Clearbrook, a local facility that provides services,
programs, and support for children and adults with intellectual and developmental disabilities.  In the six years since its inception,
DecisionOne Dental’s “A Reason To Smile” campaign has provided over half a million dollars in free dental services to more than 500 adults with developmental disabilities.

Nice Story of the Week:
Delaware - Pip the Beach Cat Takes Volunteer Efforts to Easterseals
By Mallory Metzner, WRDE TV, April 30,. 2019
Pip The Beach Cat has become quite the celebrity in Ocean City, but he strives to entertain and serve communities beyond the boardwalk. The social media star is building a strong resume in volunteering.  

Pip was eager to get out of his bubble Tuesday morning and mingle with the adults in two day programs at Easterseals in Georgetown.
Patsy Bolden, who attends the day program, is just as eager to see him. "He can do tricks for us and he's sitting up there enjoying himself and I guess he can't wait to get out of that bag and come out here," she says. 
Director for the center's adult day program, Kate Antisavage says Pip's visit is a good source of entertainment for those who come here. "One day program serves adults with acquired physical disabilities in seniors and one day program serves adults with intellectual disabilities," she explains. 
Pip volunteers 3-4 times a week. He visits nursing homes, schools, and developmental centers to do his kind of animal therapy.
Pip's owner, Emily Meadows says their type of therapy is a little bit different than what a traditional certified therapy cat might do. Pip is still too young to become certified. "Ours is a little bit more interactive," she says. "We bring presentations, we bring videos, so we watch these fun videos together and then Pip usually gets out of his bubble and he gets to do his tricks and interact with everybody."

VOR Bill Watch:
There are currently six bills in Congress that would discriminate against the more disabled members of the IDD community, three in the House of Representatives with companion bills in the Senate. The Money Follows the Person Rebalancing Program renewal has been signed into law by President Trump. (Click on each bill to view details)

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.

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 closing the facilities.
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
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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