March 22, 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

The Disability Integration Act (DIA) is a seriously flawed bill. While the intention of the bill is to provide services for all people with intellectual and developmental disabilities, it would eliminate existing services provided to the most severely impacted members of this population, and moving these individuals from their long-term homes into more isolated settings that provide fewer services, lower staffing ratios, and lower standards of care.
  • The bill would also be prohibitively expensive. It would severely inflate the federal Medicaid system and strain state Medicaid budgets.
  • There are not enough Direct Support Professionals, nurses, and other medical professionals and auxiliary workers to enact the scope of the bill.
  • The current system is already riddled with problems, especially in the lack of reporting of critical incidents of abuse and neglect.
Please write and urge your legislators to reject this bill, and find responsible ways to improve services for all people with intellectual and developmental disabilities.

Taking action is easy. Just click below to access a
pre-formatted letter that can be automatically sent to
the appropriate Congressional leaders.


The Importance of Advocating in Washington, D.C.

The organizations that want to limit CHOICE in residential settings and employment opportunities for your family have been busy this year. They have lobbied congressional offices to introduce bills that would eliminate Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). They have lobbied for bills that would renew Money Follows the Person (MFP), which enables states to close ICFs/IID and force the residents into inferior service options. They have lobbied to introduce bills that take away employment opportunities for people who cannot qualify for competitive employment, and that would eliminate the work centers that provide a safe working environment for people who want to work.

Over the past three months, VOR has traveled to D.C to meet with the staffers working on these bills, to educate them about the flaws in these bills, and to show them the harm that has resulted, that will result again, from these well-intentioned but discriminatory legislative acts.

VOR has hand-delivered our "Welcome Letter to the 116th Congress to every congressional office on Capitol Hill. We met twice with legislators to discuss the Disability Integration Act and two different iterations of The Money Follows the Person Demonstration Program Renewal. We have discussed the upcoming Appropriations bill with members of the majority and the minority parties. We have been the only voice for the rights of people who cannot take advantage of opportunities to work in competitive employment to continue to work under Section 14(c) Specialized Wage Certificates at the President's Committee for People with Intellectual Disabilities. And we have met with one of the new members of Congress in hopes of finding a champion, or at least a sympathetic voice.

VOR has partnered with ACCSES, Together for Choice, Special Mom's Network, and the National Council on Severe Autism to find common ground and present a united front in fighting for the rights of our vulnerable, oft-overlooked family members.

And now we need you.

We need your voice.

We need you to come to Washington D. C. again this year, to speak with your members of congress, their staff, and the people whose decisions alter our lives, and the lives of our loved ones. We need you to tell your stories, to share your truth, to help educate lawmakers and to make them understand our plight.

We cannot do this alone.


VOR's 2019
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.
Tentative Schedule:

Saturday, June 8, 2019
Registration: Network with families from across the country                                Noon
VOR Board of Directors Meeting & Report to Membership                                   12:30 pm
          Annual meeting of the VOR Board of Directors, open to all members
          Committee Reports and Presentations
          Mentoring our next generation of advocates
          Time will be provided for member questions and comments
Installation of VOR 2019 - 2020 Officers and Board Members                              3:30 pm
Reports from the States                                                                                            4:00 pm
          Participants report on news from their states. Session is moderated by VOR Board Members
Sunday, June 9, 2019
Registration: Network with families from across the country                             11:30 am
VOR Legislative Initiative 2019                                                                                     Noon
      Opening Remarks - Joanne St. Amand, President and Hugo Dwyer, Executive Director
      Panel Discussions
      Guest Speakers - TBA
     (Other speakers TBA)
Legislative Briefing                                                                                                       3:00 pm
           Panel Discussion and Issue Briefing. Folders for Congressional visits will be distributed.
Awards and Events                                                                                                    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.

Monday, June 10 – Wednesday, June 12, 2019
VOR's Legislative 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 10               Informal De-briefing                       6:30 - 8:00 pm
Tuesday, June 11        Informal De-briefing                 6:30 - 8:00 pm

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

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 [email protected] and we will try to help!
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:
Kids With Severe Autism Often Overlooked In Research
By Shaun Heasley, Disbility Scoop, Mar 19, 2019
Children who are on the severe end of the autism spectrum are increasingly being left out of studies on treating the developmental disorder, new research suggests.

A review of 367 studies on children with autism conducted between 1991 and 2013 finds that the proportion of research that included those with severe autism “decreased significantly.”
“We found a marked decline in the inclusion of people severely affected by autism in clinical research, even using a very liberal definition of severity,” said Matthew Siegel of Tufts University School of Medicine and Maine Behavioral Healthcare. Siegel is a senior author of the literature review, which was published recently in the Journal of Autism and Developmental Disorders and is believed to be the first to assess whether research is overlooking those with severe autism.
Overall, about half of the studies that were reviewed included those who are severely affected. But, the proportion declined substantially from more than 90 percent in the early 1990s to just 30 percent in the 2010s, the study found.

For each year, the odds that individuals with severe autism were included in studies dropped by 16 percent over the course of the time examined.

That lack of representation has consequences, researchers said.

Study: Reworked Autism Definition Prompted Drop In Diagnoses
By Shaun Heasley, Disability Scoop March 20, 2019
Five years after a sweeping overhaul of the diagnostic criteria for autism, research suggests that the changes have led fewer people to be identified with the developmental disorder.

The definition of autism was reworked with the adoption of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders in 2013.
The new manual did away with Asperger’s syndrome, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified, in favor of a broad diagnosis of “autism spectrum disorder” with clinicians denoting a level of severity.

Now, researchers have conducted a meta-analysis looking at 33 studies examining the impact of the altered definition. They found that diagnoses of autism have decreased since the new DSM was adopted.

Overall, about 1 in 5 individuals who would have received an autism diagnosis under the old DSM are being left out under the new definition, according to findings published this month in the Journal of Autism and Developmental Disorders. And, just a small percentage of these individuals are being diagnosed instead with social communication disorder, a separate, new condition that shares some of the social deficits seen in those with autism.

State Medicaid Cuts:
Last week, we featured an article on the President's determination to make major cuts to Medicaid in his budget proposal. But the cuts to Medicaid and I/DD services are already being enacted, on a state level, in states all across America. Below are four articles showing this disturbing new trend, as states try to address their budget shortfalls.
New York - Health Care Providers Protest Against Cuomo’s Proposed Medicaid Cuts
By Olivia Belanger, Watertown Daily Times, March 6, 2019
Thousands of health care providers protested Gov. Andrew M. Cuomo’s proposed reductions to Medicaid spending in Albany and throughout the state Tuesday.

With “some cuts never heal” as the mantra, those rallying decried a proposal to reduce the state’s Medicaid spending by $567 million in the 2019-20 fiscal year and by $1.3 billion over the next two years. Last year, $68.5 billion was spent on Medicaid by the state.

For nursing homes, the impacts of the proposed cuts total over $400 million for the 2019-20 state fiscal year and more than $800 million over the next two years. Ambulance services would have an estimated loss of $14 million per year.

In response, the Healthcare Association of New York State organized the rally to show the “devastating reduction” of vital health care support if the Medicaid proposal is approved. “Each cut lessens critical funding support that hospitals, health systems and nursing homes need and depend on to provide quality healthcare services all New Yorkers deserve,” the association stated in a news release.

Local ambulance services also participated in the rally. The United New York Ambulance Network
worked in conjunction with the association to raise awareness about the elimination of Medicaid crossover and supplemental funding in the budget proposal. Last week, the network sounded the alarm about the impending collapse of the statewide ambulance industry if crucial Medicaid and Medicaid reimbursement funding is not reinstated in the 2019-2020 state budget.

Bruce G. Wright, president and CEO of Guilfoyle Ambulance Service, said the emergency medical services statewide are incredibly fragile as it is, so cuts like this aren’t plausible. “This would be completely devastating,” Mr. Wright said. “You’re talking about fewer ambulances on the roads and detrimental outcomes for sick and injured patients.”

Regardless of type of care, the association stressed that cuts of this magnitude will not heal.

“Cuts to Medicaid affect everyone’s care. Policymakers must understand the devastating impact these reductions would inflict,” the association stated.

Virginia - Cuts Impact 'The Most Fragile in Our Medicaid System
By Cathy Dyson, Fredricksburg Freelance-Star, March 16, 2019
The sign on the door tells visitors they’re at the home of a medically fragile child and would they please wash their hands, remove their shoes and use sanitizer upon entering—or not enter at all if they’re sick or have been around someone who is.

Parents Amy and Shannon Fields are trying to keep 7-year-old Cary Lynn stable. They adopted the girl when she was 9 months old—just a “little butter bean”—her mom recalled, and she was about to be put in an institution because no one wanted to undertake her lifetime of care.

Since then, Amy Fields has become her daughter’s caregiver, with help from personal care attendants paid for by Medicaid. Cary Lynn and Marvin, 11, both receive Medicaid as all children adopted through Virginia agencies do. Their father, Shannon Fields, works in information technology for a supermarket chain based in Mechanicsville.

Cary Lynn has “about a bajillion things going on,” her mother said, including cerebral palsy that’s
taken away all body movement, fluid on the brain,visual impairment and mitochondrial disease. Her needs are so severe, she qualifies for placement in a nursing home.

Yet as a result of recent changes, the amount of time Medicaid will pay attendants to help with her care has dropped from 80 hours to 49 hours a week. Similar reductions are happening statewide as the Virginia Department of Medical Assistance Services, which administers Medicaid, tries to cut costs.

“A physician who has never laid eyes on my child made this decision, and I’m just one of many this is happening to,” Amy Fields said. “Between the eternal waiver wait list, reduction of hours and lack of support, we truly are in a lose–lose situation.”

Kentucky - Passport Sues State Over Rate Cuts It Says Could Put It Out Of Business
By Deborah Yetter, Louisville Courier Journal, February 15, 2019
Passport Health Plan, in a lawsuit filed Friday, claims that state rate cuts have affected it so dramatically that the Louisville-based, non-profit Medicaid managed care company could be insolvent by March and subject to state takeover.

The abrupt filing of the lawsuit Friday in Franklin Circuit Court signals the collapse of extensive efforts to resolve a dispute with the state Cabinet for Health and Family Services over the cuts enacted last year to the company's Medicaid business.

It asks that a judge bar the state from imposing the cuts that date back to July and repay millions of dollars in cuts for the past eight months — cuts that threaten its existence as well as its new headquarters under construction in west Louisville.

"Passport has done immeasurable good work in the communities it serves for two decades," the lawsuit says. "But it appears to have been slated for immediate execution by individuals who have held their positions for less than a year."

Alaska - Proposed Medicaid Cut Raises Concern for Health Centers, Hospitals
By Andrew Kitchenman, Alaska Public Media, February 25, 2019
Medicaid is one of the most expensive parts of the state budget. And Gov. Michael Dunleavy is proposing a huge cut to the program — $249 million.

It’s part of his effort to dramatically reduce what the state spends on government. So far, there aren’t many specifics on the changes the administration would make to Medicaid. But providers and patient advocates are worried the cuts could cost thousands of jobs and put Alaskans’ health at risk.

State budget policy director Mike Barnhill said a primary way the administration will reduce Medicaid spending is to cut the amount the program pays doctors and other providers. “Alaska reimburses providers under the Medicaid program at a higher rate than any other state in the country,” he said. “And so we’re taking a closer look at that.” According to Kaiser Family Foundation statistics, Alaska’s Medicaid reimbursements are more than twice the national average, and 46 percent higher than any other state.
But that doesn’t mean it will be easy to make cuts, according to Cheryl Kilgore, CEO of the Interior Community Health Center in Fairbanks. The center provides medical, dental and behavioral health care to Alaskans with low incomes. “The more you drive down what you’re paying for that primary care, which by the way isn’t where the big costs are, the more you’re going to potentially have providers within that system say I can’t afford to do this,” she said.

Kilgore expects the organization to reduce staff if the cuts go through.

“You cut the Medicaid reimbursement to us, we’re going to have to lay off staff — there’s absolutely no doubt about it,” she said.

State News:
Iowa - Disabled Residents Evacuated from Glenwood Resource Center as Flood Cuts Water Supply
Tony Leys, Des Moines Register, March 20, 2019
State officials evacuated dozens of Iowa’s most severely disabled residents from their homes after floods limited their water supply.

About 80 people with intellectual disabilities were transferred Tuesday from the Glenwood Resource Center in western Iowa to a similar institution 150 miles away, in Boone County.

The Glenwood Resource Center, along with the rest of the town of Glenwood, is facing a drastic water shortage because Missouri River floodwaters inundated the town’s treatment plant.

The center is a state institution for adults with severe intellectual disabilities, such as epilepsy, birth injuries or autism. It usually houses about 200 residents, some of whom are unable to walk or speak.

Spring floods have caused major problems in 43 of Iowa's 99 counties. At least four people have died in the Midwest flooding, others are unaccounted for and hundreds are displaced. Many small businesses are under water, hundreds of acres of farmland are washed out and major utilities were cut off to towns in some areas.
Matt Highland, a spokesman for the Iowa Department of Human Services, said Wednesday the transferred residents had been moved to the Woodward Resource Center. State officials worked with the facility’s medical staff to determine which of the residents were most able to travel, Highland said in an email to the Register.
“Members who were identified as medically fragile were not transferred,” he wrote.

Richard Crouch, president of the facility's parent/family council, said Wednesday afternoon that officials expect to have all residents back in the Glenwood facility by Friday. Crouch's son, Gary, has lived at the institution for decades and was not among those evacuated.

Richard Crouch said he can't remember such an evacuation being necessary before, and he said the action was necessary but stressful on the residents, their families and the staff members.

Tennessee - 'Do we have the Will?' Tennessee Lawmakers Discuss Bill to Support Children with Disabilities
By Jessica Bliss, Nashville Tennessean, March 16, 2019
Rosalie Howes never expected that one day she would have to choose between her son's health and her marriage.

Her 7-year-old son, Hyrum, suffered a stroke at birth, causing severe physical and intellectual disabilities and ruining her family financially.

The Howes lost Hyrum's TennCare insurance coverage because their household income was deemed too high after her husband, Joseph, landed a job in civil engineering.

Their private insurance doesn't cover even half of Hyrum's needs, so the family now pays more than $36,000 a year just for the boy's medicine and therapy.

If they put Hyrum in an institution, his TennCare coverage would be reinstated. There is another extreme solution, one the couple has discussed: Get a divorce.
"I can either send Hyrum away, or my husband,"

Rosalie says.The Howes have decided to separate and start the divorce process so Hyrum can qualify for TennCare again. But it shouldn't have to come to that.

Tennessee lawmakers are currently discussing a bill that would provide a Medicaid pathway to children like Hyrum who have severe disabilities and live at home with their parents. They will resume discussion for a possible vote at Wednesday's House TennCare Subcommittee meeting.

"This waiver would help families like mine," Rosalie Howes told the subcommittee at a hearing this week. "My husband would be able to stay and tuck our kids in at night and read him stories."

Maryland - Opinion: Missing in Wage Debate Is Bill’s Impact on People With Developmental Disabilities
By Laura Howell and Ande Kolp, Maryland Matters, March 16, 2019

While there has been widespread media coverage and political exuberance about the expected passage of the Fight for $15 bill to increase the minimum wage, a critical issue has largely been ignored by the media, and that is the impact of the legislation on Marylanders with developmental disabilities.

There are over 96,000 Marylanders with intellectual and developmental disabilities such as autism, Down syndrome, cerebral palsy, and other intellectual and developmental disabilities. Currently 25,000 of them rely on services provided by largely non-profit providers in every community in the state.

Another 4,800 are on a waiting list for services kept by the Maryland Developmental Disabilities Administration, and annually an additional 600 to 700 youth with developmental disabilities exit the school system in need of adult services.

All of these Marylanders are either waiting for, or are relying on, services that are funded with state and federal Medicaid dollars. Those dollars in turn pay for an array of important services and supports; many of which are provided by historically low-wage workers – our direct support professionals.

The work of direct support professionals, while rewarding, can also be quite challenging.

Staff must meet training requirements set by the state, pass criminal background checks, and be able to work independently in the community helping people with developmental disabilities to live, learn and work. Unlike staff working in many other Medicaid-funded home and community-based settings, a direct support professional must be a “jack/jill of all trades,” able to successfully master a variety of skills, including managing health and medications, supporting people with behavioral issues that can jeopardize the person’s or public’s safety, providing personal care, helping people get and keep jobs, helping people manage their insurance and other benefits, assisting people with their finances, teaching meal preparation and nutrition, and helping people build friend and family relationships and deal with sexuality, while also ensuring that people’s homes are safe and clean.

It is hard to think of any other job that requires such a complexity of knowledge, skills and responsibilities, while paying so little.

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. 1342 & S. 548 - 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 [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
Toll Free: 877-399-4867 Fax: 877-866-8377
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