May 11, 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
Only Three Rooms Left!
As of this writing, there are only three rooms left in our bloc at the Hyatt. DC is booking up fast, and prices are going up for Sunday, Monday, and Tuesday nights. Our reservations at the Hyatt have been extended through Sunday night, so please act now!

VOR's Annual Meeting & Legislative Initiative
Hyatt Regency Capitol Hill, Washington, D.C.
June 9 - 13, 2018
VOR 2018 Annual Conference and Washington Initiative
June 9 - 13, 2018
All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C.
Saturday, June 9, 2018
Registration: Network with families from across the country mmmmmmmmmmmm Noon
VOR Board of Directors Meeting & Report to Membership mmmmmmmmmmmmm 12:30 pm
          Annual meeting of the VOR Board of Directors, open to all members
          Committee Reports and Presentations
          Time will be provided for member questions and comments
Installation of VOR 2017-2018 Officers and Board Members mmmmmmmammmmm 3:30 pm
Reports from the States mmmmmmmmmmmmmmmmmmmmammmmmmmmmm 4:00 pm
          Participants report on news from their states. Session is moderated by VOR Board Members
Sunday, June 10, 2018
Registration: Network with families from across the country mmmmmmmmmmmm 11:30 am
VOR Legislative Initiative 2018 mmmmmmmmmmmmmmmmmmmmmmmmmmm Noon
      Opening Remarks - Joanne St. Amand, President and Hugo Dwyer, Executive Director
      Panel Discussion on State Advocacy – Liz Belile (TX). Susan Jennings (PA), Rita Winkeler (IL)
      Guest Speakers – Kate McSweeny, Vice President on Govt. Affairs & General Counsel at ACCSES
     (Other speakers TBA)
Legislative Briefing mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm 3:00 pm
           Panel Discussion and Issue Briefing. Folders for Congressional visits will be distributed.
Awards and Events mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm 5:00 pm

VOR’s Sunday Dinner at The Dubliner - 7:00 pm
Sunday Dinner at The Dubliner is optional. The price is $35 per person. Alcoholic beverages are available at an extra charge.
We ask that you make a reservation in advance.

Monday, June 11 – Wednesday, June 13, 2018
The Washington Initiative
Visits to Capitol Hill - Personal meetings with Members and Congress and their staff are the most effective way to educate and influence federal lawmakers. Join VOR members and advocates from around the country to convey the importance of residential choice and family decision-making to Members of Congress. Be sure to plan enough time to cover your state’s Congressional Delegation.
Monday, June 11                                    Informal De-briefing mmmmmmm 6:30 - 8:00 pm
Tuesday, June 12                                    Informal De-briefing mmmmmmm 6:30 - 8:00 pm

To register for the conference and legislative initiative or make a dinner reservation at the Dubliner, go to:


VOR Members:

____       $110 per member if paid after May 1, 2018
Non-VOR Members:       (Fee includes 1 year membership (Reg. $45)

____        $150 per person if paid after May 1, 2018

Hyatt Regency Capitol Hill      400 New Jersey Ave, NW    Washington, D.C.    20001
We have a bloc of rooms available for conference attendees.
droppable-1525460223944The VOR Group rate is $279 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 1-888-421-1442 and mention “VOR’s Annual Conference” when making your reservation.

Congressional Lists Are Available NOW!
It's time to start making appointments for with your legislators for
Hill Visits during the Legislative Initiative, June 11 -13

More than 30,000 Nursing Home Eviction Notices to be Sent in Louisiana Thursday
By Greg Hilburn, The Monroe News-Star via USA Today, May 7, 2018
Louisiana's Department of Health will begin sending nursing home eviction notices Thursday to more than 30,000 residents who could lose Medicaid under the budget passed by the state House of Representatives.

"The Louisiana Department of Health is beginning the process of notifying all impacted enrollees that some people may lose their Medicaid eligibility," Department of Health spokesman Bob Johannessen said. "The goal of the department is to give notice to all affected people as soon as possible in order that they begin developing their appropriate plans."

Gov. John Bel Edwards' staff has planned a press conference Wednesday for more details, a day before the notices are set to be mailed to 37,000 Medicaid recipients in nursing homes or other long-term care facilities.

"(The Department of Health) told us they're sending out the letters May 10," said Mark Berger, executive director of the Louisiana Nursing Home Association, during testimony at the Senate Finance Committee meeting Monday.

Medicaid is a federal-state collaboration covering more than 70 million people, or about 1 in 5 Americans, making it the largest government health insurance program. President Obama expanded the program by allowing states to cover millions more low-income adults.

Rolling back the expansion has been a longtime goal of the GOP. The Trump administration has encouraged states to reshape their Medicaid
programs, paving the way for states like Kentucky and Michigan to include new measures like work requirements for able-bodied adults.

In Louisiana, the issue was front and center in the state Senate Finance, which was hearing public testimony on the budget sent to it by the House for most of the eight hours the panel met.

"This sounds like mass chaos," said Sen. Regina Barrow, D-Baton Rouge, who called the letter notification "very troublesome."

"What type of people are we in Louisiana if we put people out who built Louisiana?" Sen. Greg Tarver, D-Shreveport, said of the potential evictions. "This is horrible."

Next year's budget begins July 1, which is when the evictions could technically begin.

"This is our cry for help," said Laurie Boswell, chief executive of Holy Angels in Shreveport, which supports long-term residential care for people with developmental and intellectual disabilities. "There is no place for them to go."

"This make us look heartless," said Senate Finance Chair Eric LaFleur, D-Ville Platte.


Government Urged To Improve Disability Services
By Michelle Diament, Disability Scoop, May 11, 2018
Services for children with disabilities and their families should be far more coordinated and easier to access, according to a new report produced for the federal government evaluating everything from health care and special education to employment.

The 285-page analysis from the nonprofit National Academies of Sciences, Engineering and Medicine found that even the most capable families struggle to navigate the complex web of programs available to assist those with disabilities. For those with less means or families who live in rural areas, the report found those challenges are further exaggerated.

“Service fragmentation places a heavy burden on families of children with disabilities who need access to and coordination of high-quality services,” said Amy Houtrow, associate professor of physical medicine and rehabilitation and pediatrics at the University of Pittsburgh, who chaired the committee tasked with producing the report. “Even the most well-resourced and
organized families indicate how daunting it is to navigate the various service sectors to ensure that their children get the care they need to thrive.”

The National Academies of Sciences, Engineering and Medicine convened a group of 16 academics who focus on various aspects of the disability experience to produce the report through a contract with the Social Security Administration.

Members of the panel evaluated federal, state and local programs providing all types of services to school-aged children with disabilities.

Overall, the report paints a picture of a services system that’s riddled with barriers stemming from variation in the availability of services from one state to the next, fragmented services, an inadequate workforce of professionals to provide care and insufficient plans to transition people to adulthood, among other issues.

What Is Medical Care Like for Autistic Adults?
Poor healthcare may be more common than not in the autistic adult population.
By Susan Senator, Psychology Today, May 07, 2018
The summer that my autistic son Nat turned twenty-five, our lives changed in a completely different, unexpected direction: health issues. I think I started noticing something was happening with Nat in September of that year. Nat lived with a caregiver at that time, so we only saw him on weekends. One morning Nat came into his day program with puffy eyes and they called me to discuss it. “He was hanging his head, quiet, not talking to himself, not walking around. I asked him some ques­tions—he started crying a little,” they said.

“What questions?” I broke in, also wanting to cry. But I knew. For months I had been worrying that someone somewhere was abusive to him. I kept asking him, in ways I thought he’d understand, “Is someone being bad to Nat? Are you hurt? Do you like your job?” But Nat has profound
communication challenges, and he can’t usually answer those sorts of questions.

What I did not realize but that I know now is that Nat likely was suffering from a fractured rib—something we were to learn about a year later, from an emergency room x-ray. But at the time, I had no reason to suspect this; after all, the reason we went to the emergency room was to check for appendicitis – which he did not have. No one thought to give him an x-ray. Among the doctors there in the ER, there seemed to be no real knowledge of how to interview Nat, what protocols to follow. It felt like the examination there was mostly just guesses.
Eventually, by June it became clear that something scary was indeed happening. I had to face it: the odd hesitation, the immovable silence had been happening since September. We went to Nat’s neurologist from childhood, who ultimately sent us to a specialist in New York. But this doctor canceled, telling us that Nat was too old for his prac­tice. He referred us to another specialist, who told us the same thing. Nat’s psychiatrist started him on new medication for mood disorders, which helped but only somewhat.

It wasn’t until a year later that we would discover a telltale fist-shaped bruise on Nat’s chest, and another ER visit confirmed broken ribs – again. But I wondered if the doctors should check him for more than that – sexual assault, perhaps. They did not. Once again, I found myself feeling very dissatisfied with the lack of definite procedures here. It seemed to me that because he is an autistic adult, medical professionals throw up their hands in helplessness.

We are not alone in this kind of experience.

Phylis F., a New York parent of a thirty-year-old autistic, deaf, and manic daughter wrote to me about when her daughter had impacted teeth: “She woke up from the anesthesia and asked to use the toilet. The staff refused (because she was too groggy to walk) and offered a bedpan. She had no idea what it was!! Five nurses and the surgeon held her down for 20 minutes, unit l could convince them to take her to the bathroom in a wheelchair!

New Jersey - Health Care Falls Short for the Developmentally Disabled Population
By Briana Vannozzi, NJTV News, May 4, 2018
“These are all of his medications he takes every single day,” said Joann Davis while methodically dropping pills into small containers. The regimen is for her 42-year-old son, Scott, who has Down Syndrome. And this daily cocktail has become their lifeline. He’s been battling depression and post-traumatic stress since February, after a series of unexpected family emergencies.

“It just kept escalating to where we were at the emergency room in local hospitals four times, and every time they could provide no help. They said he was not appropriate for their mental health units, and that they had no one on call with expertise in the field, so they’d give him a shot of Ativan and send him home,” said Davis.

They experienced what Davis says has been an increasing problem: access to proper medical and behavioral care for the developmentally and intellectually disabled. She says they’ve battled it Scott’s entire life, but the issue is worsening as he gets older, and she says it grew more pronounced after the Christie administration last fall separated and transferred control of all mental health and addiction services out of the Department of Human Services and to the Department of Health .

“It’s not just mental health, it’s regular medical health issues,” Davis said. “There are no doctors that are qualified, we don’t have any clinics for our people.”

Davis says her son was bounced between several medical facilities across the state and far from their
Burlington County home, most of which are on an official government list of dedicated systems to treat the developmentally disabled population.The desire is for everyone to access generic services out in the community, and while that sounds good in theory, the fact is, our population has special needs. They need specially trained individuals and we believe we need more programs like the Arc of Mercer, like the Arc of Monmouth in the community, and we have to look at creative ways of funding them,” Baffuto said.

“Every place you look, you have urgent care centers that are popping up,” she continued. “Why can’t we have an urgent care center for the developmentally disabled? Virtua Hospital is opening up a new hospital. Why can’t these hospitals have a dedicated facility for people that have special needs that really aren’t being served elsewhere? It’s a crisis.”

“Vulnerable Oklahomans Were Not Forgotten,”
DHS Making Plans for $35 Million Funding Increase
From KFOR TV Oklahoma News 4, May 4, 2018
After the governor signed the budget for the upcoming fiscal year, a state agency is breathing a sigh of relief.For years, state agencies, like the Oklahoma Department of Human Services, have been asked to do more with less.

In March, DHS officials asked for a $48 million increase to the agency’s operating budget.
“Right now, our greatest need is something to help us with the rates that we pay providers, so they can meet the requirements we have of the contracts so they can treat children and adults effectively,” DHS Director Ed Lake said. “It’s been so long that providers have not had rate increases that it’s really affecting their businesses, and I think, as a state, we have to look seriously at that.”

Last week, Gov. Fallin signed a multi-billion budget bill into law. Under Senate Bill 1600, DHS would receive a $34 million increase for the upcoming fiscal year.

Officials say the measure, along with an expected increase in the state’s federal matching dollars for Medicaid programs, will allow the agency to provide services to individuals with developmental disabilities on the waiting list, increase provider and foster parent reimbursement rates, and provide employees agency-wide with pay raises.
Oklahoma Department of Human Services

“We are extremely grateful to Governor Fallin and the Legislature for this increase which will allow us to restore some detrimental cuts and provide increases to foster and adoptive families, child care providers, and agencies serving children in our custody and seniors and people with developmental disabilities,” said Lake. “We appreciate the advocacy efforts of the people and families we serve as well as our partner agencies. Their diligence in telling their stories helped ensure the needs of vulnerable Oklahomans were not forgotten this year.”

Delaware: Hundreds Rally in favor of Salary Boost for Workers who Serve Adults with Disabilities
By Mark Fowser, WDEL, May 11, 2018

Years without raises and high turnover are negatively affecting the quality of care for Delaware adults with disabilities, according to many of their advocates who rally at Legislative Hall Thursday.

Organizations such as Easter Seals, Kent-Sussex Industries, Mosaic and Autism Delaware were represented in a show of support for legislation that its cosponsors say would direct $9-million toward improving the compensation for direct support professionals.

Mary Anne Bonner has a 33-year-old daughter who is a long-time client of Easter Seals.
"We've watched as in recent years her caregivers have turned over. She's had four caregivers in three years," Bonner said. "That's partly due to the fact that it's difficult for a caregiver to make a living on the salary and wages they have now."

House Bill 104, according to its cosponsors, would bring compensation for direct service professionals to the market rate. They also maintain it would boost recruitment efforts.

Connecticut - Group Home Worker Strike Avoided by Senate Vote
By Bill Cummings, CT Post, May 5, 2018
A strike by workers who care for disabled patients was avoided Saturday when the state Senate joined the House in approving a new wage pact for the employees.About 2,500 members of the SEIU 1199 union were ready to strike on Monday if the Senate failed to approve a new wage pact already ratified by the House — a move that would have cost the state $1 million a day to replace the nonprofit workers.

The wage pact was ratified by a 29-4 margin, with three senators not voting, and the bill is expected to be quickly signed by Gov. Dannel P. Malloy.
“For years the state has been moving services into the private sector,” said state Sen. Cathy Osten, D-Sprague, referring to previous decisions to privatize the group home workers.

“Our private, nonprofit providers have not received wages acceptable for workers who take care of these wonderful people,” Osten said. “This will eliminate the need for a strike.”

The bill directs the various state agencies responsible for the services to increase wages for both union and non-union workers who care for intellectually or developmentally disabled patients. The workers help the patients with eating, dressing, brushing teeth and other necessary activities.

“For far too long, the people who provide care to our most vulnerable neighbors have been
underpaid for their critical work,” said Malloy. “The action taken by the Senate will ensure they are compensated fairly while helping to avert a strike that would disrupt the lives of the individuals with intellectual disabilities and cost Connecticut taxpayers an estimated $1 million per day,” Malloy said.

Jennifer Schneider, communications director for the SEIU 1199 union, said the vote ends the need for a strike.

“We greatly appreciate the Senate, the House and the governor for taking up this important matter that will positively impact the lives and wages of 18,000 workers and thousands of clients across the state,” Schneider said.

“The Senate ended a 12-year drought of funding for services for the disabled in the private sector,” Schneider said. “Caring for people with disabilities is a difficult and important job and the workers who provide these services deserve to be valued.”

The workers complained that they earn less than employees at a typical Dollar Store and had not received a wage increase in more than 10 years. The bill impacts 170 private providers serving about 12,000 clients.

From our Friends at ACCSES:
Please sign on!
  • Congressman Glenn Grothman (R-WI-06) recently introduced the Workplace Choice and Flexibility for Individuals with Disabilities Act (H.R. 5658). This bill will restore common sense to the definition of competitive integrated employment and provide increased employment opportunities for people with disabilities. People with disabilities across the country have been denied placements in high-paying jobs because of the regulations that implement the Workforce Innovation and Opportunity Act (WIOA). ACCSES supports expanding opportunities and keeping a full array of options available. We were honored to work with Congressman Grothman and his staff to help draft this legislation. Go to the ACCSES Action Center and tell your Members of Congress to cosponsor and pass this important bill to increase employment opportunities for people with disabilities! Click here to support this bill
Indiana - Task Force to Examine Support Needs for Hoosiers with Disabilities

A state plan for the support needs of Hoosiers with intellectual and developmental disabilities will get an update soon for the first time in 20 years. A new state task force aimed at helping the estimated 100,000 Indiana residents has scheduled meetings across the state.

The link to the livestream can be found here.
Dates, times and location for each meeting of the task force are as follows:
  • Wednesday, June 27, 2018, 10 a.m.--2 p.m. CT, Valparaiso
  • Wednesday, Aug. 22, 2018, 11 a.m.--3 p.m. ET, New Albany
  • Wednesday, Oct. 17, 2018, 11 a.m.--3 p.m. ET, Columbia City
All meetings are open to the public and will be streamed live. Public comment will occur prior to the start of each meeting to provide input regarding services and supports for people with disabilities. Requests for accommodations for meetings of the task force should be made by contacting Kristina Blankenship at at least 48 hours in advance of the task force meeting.
For more information, visit:

VOR's Annual Meeting & Legislative Initiative
Hyatt Regency Capitol Hill, Washington, D.C.
June 9 - 13, 2018
The conference will be held at the Hyatt Regency Capitol Hill again this year. This is a very nice hotel and it is only a short walk to the Capitol and the Senate and House Office Buildings. We have reserved a bloc of rooms at the hotel for the event.

We are also accepting reservations for our Sunday Dinner at the Dubliner . This is an added event, with a $35 Prix-fixe menu that includes salad, entree, dessert, and non-alcoholic beverages (alcoholic beverages are available at an additional cost). This event has been popular in past years, so make sure to reserve your seat when you register. Space is limited, and this event has reached capacity in recent years, so make sure to reserve now!
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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