March 1, 2019
VOR Weekly News Update
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


VOR'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

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.
Breaking News:
Representative Debbie Dingell (D-MI) and Senator Rob Portman (R-OH) Introduce Money Follows the Person Renewal Bill in Congress

H.R. 1342 & S. 548 - These bill are expected 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 text of the bill has not been released, but we expect that it will seek to renew it for another 5 years.

We will keep you posted about this effort
National News:
The Risks of Capped Medicaid Funding
By Manatt, Phelps & Phillips, LLP, JD Supra Legal News, February 25, 2019

JD Supra Editor’s Note: Although efforts to cap federal funding for the Medicaid program have faded from the limelight since congressional attempts in 2017 failed to repeal the Affordable Care Act (ACA), such proposals are still being advanced. Most recently, the president’s FY 2019 budget called for a block grant to replace uncapped funding for Medicaid expansion, with most other federal Medicaid spending subject to a per-person cap. Although the 2018 midterm elections changed the political landscape, the recurrence of proposals to cap federal Medicaid funding and the $779 billion federal deficit for fiscal year 2018 suggest that federal Medicaid caps will continue to interest lawmakers. In a new article in Health Progress, the journal of the Catholic Health Association, Manatt Health explains the serious risks of capped Medicaid funding. Key points are summarized below.

Currently, the federal government and states share in all costs associated with running the Medicaid program. Capping federal funding would require states to make tough decisions about whether to increase their own spending to make up the lost federal share or to cut back on coverage, benefits and access to keep spending within the cap.

Medicaid provides critical healthcare and long-term services and supports (LTSS) to 73 million people, including the most vulnerable members of our society. A fundamental redesign of Medicaid financing puts the health and well-being of these individuals in jeopardy.

Since Medicaid was established in 1965, the federal government and the states have shared responsibility for financing the program, with the federal government providing a legal commitment to match state spending on authorized program costs, including medical care, LTSS and administrative expenses. For most Medicaid spending, the federal share is determined by each state’s federal medical assistance percentage (or matching rate). States with lower relative per capita incomes receive higher matching rates (and vice versa). States also receive different matching rates for administration and certain benefits and populations.

Shared financing of Medicaid costs provides states, beneficiaries and healthcare providers with protection against fluctuations in spending and enrollment. If costs spike due to the introduction of an expensive new drug or Medicaid enrollment increases due to an economic downturn, the federal government is still responsible for its share of allowable program costs, and increases in state costs would be mitigated by the federal financial commitment.

Capping federal Medicaid funding would undo the federal government’s commitment to share in all allowable costs of operating the Medicaid program. Proposals to cap federal Medicaid funding generally have taken two approaches that are not mutually exclusive.

  • Block grants. Block grants generally provide states with a set amount of federal funding each year, regardless of actual program costs and enrollment. They are attractive to some lawmakers because they provide a high degree of budget certainty to the federal government. Historically, block grant proposals have allowed capped payments to grow each year based on a national trend rate (such as inflation)—and may or may not have a state spending requirement.

  • Per capita caps. Per capita cap proposals vary, but they all cap the amount of federal spending on Medicaid on a per-person basis, with the amount of federal funding available to a state depending on the number of individuals enrolled. In most proposals, per capita caps are set based on state spending in an earlier period, trended forward by a national trend rate.

Both block grants and per capita caps have been included in several different proposals advanced by Republicans over the past several years, including Graham-Cassidy, which remains the Republicans’ preferred approach to capping Medicaid funding, despite the Senate’s decision in 2017 to call off a vote rather than risk defeat. Graham-Cassidy contains many of the same features as earlier proposals—the American Health Care Act (AHCA) and the Better Care Reconciliation Act (BRCA)—including a per capita cap on most federal Medicaid spending (although with slightly different trend rates for certain groups) and an aggregate cap relating to most program spending. However, instead of phasing down the enhanced match for expansion results, as previous proposals did, Graham-Cassidy proposed to eliminate the Medicaid expansion and the health insurance marketplace and divert funding to a block grant for states, with broad flexibility in how states could use their block grant funds.

Falling Through Cracks: When The Safety Net for Young Adults With Autism Spectrum Disorder Fails
By Eva Loeffler, Antioch Odyssey Online,
February 25, 2019
Imagine spending days in the hospital emergency room with your child—who at times is strapped on a gurney sedated and restrained-—because there is no other place to go?

This is the reality for young adults with autism spectrum disorder  as it was for my twenty-two-year-old daughter—who experiences such severe aggressive or self-injurious behaviors emergency intervention is necessary.

Few will have a place to go after discharge.
Most people with ASD do not experience aggressive behaviors, but for those that do, a road of hardship will likely ensue for them and their families. According to researchers Weiss and Lunsky, aggression, self-injury, and property damage are the major causes leading to hospitalization for people with autism spectrum disorder and intellectual disorders.

Autism Spectrum Disorder (ASD) and Intellectual Disorders (ID) are neurodevelopmental disorders that affect communication, emotional regulation,
and social skills. When individuals with ASD and ID develop mental health disorders, impairment in communication and emotional regulation and underlying mental illness can manifest as aggression.

People with ASD and ID are hospitalized at a rate six times higher and will likely have longer psychiatric hospital stays than people without ASD. Many will not receive appropriate treatment that is tailored to their unique needs due to lack of understanding, knowledge, and training by mental health professionals. A recent study found that mental health treatments are challenging due to individuals limited communication skills, unique individual challenges, as well as the mental health field’s tendency for diagnostic overshadowing, which is the assumption to contribute behaviors to the developmental diagnosis, not necessarily the mental health diagnosis.

Dentists No Longer Permitted To Turn Away Patients Due To Disabilities
By Blythe Bernhard, Disability Scoop,
February 28, 2019
People with developmental disabilities may find it easier to get dental care after a national board changed its ethics policy to be more inclusive.

The American Dental Association recently revised its code of conduct to prohibit denial of care to patients with physical, developmental or intellectual disabilities. In cases where a dentist does not have the equipment or expertise to meet a particular person’s special needs, the code now requires them to refer the patient to an appropriate dentist rather than simply turning them away.

Dr. James Smith, who leads the ethics council of the dental association, called the change which took effect late last year “the right thing to do.”

“We recognized that addressing this and including this in the code of conduct helps to ensure that we are providing justice and equity for individuals with disabilities,” Smith said.

Because of a lack of access to dental care, advocates say adults with developmental disabilities are at higher risk for poor oral health. In Wisconsin alone, nearly one-third of adults with disabilities had a tooth removed in the last year
and one in four had not visited a dentist in at least12 months, according to Disability Rights Wisconsin.

Dental providers have expressed concern about the additional time it may require to treat people with intellectual and developmental disabilities, experts said.

“Sometimes it’s difficult to have a patient in the chair if they are very, very anxious about being treated, if they have difficulty sitting still or if they feel a lot of fear, and sometimes those circumstances are more prevalent in people with varying disabilities,” said Jane Koppelman, senior manager of the dental access campaign for the Pew Charitable Trusts.

Patients with special needs are then more likely to receive general anesthesia for routine dental care, Koppelman said.

National Core Indicators 2019 Report on Staff Stability released.
National Core Indicators - a collaboration Between the National Association of State Directors of Developmental Disabilities Services, the Human Services Research Institute, and Participating States - Has Released their Staff Stability Report for 2019, based on data gathered in 2017.
State News:
To find help for her disabled daughter, Michigan mother had to leave the state
Michigan Public Radio, February 19, 2019
Parents of children with severe autism in Michigan have limited options when it comes to finding long-term care for their kids.

Securing reliable in-home care is often a challenge, and the state’s residential mental health care facilities often lack the resources necessary to accommodate patients with extremely aggressive or violent behaviors.

For Cyndi Sibley, finding care for her daughter required driving across the country to a facility in Maryland. 

Jackie, Sibley's 19-year-old daughter, has a severe form of autism that requires constant care. Sibley says when Jackie reached adolescence, she began to display dangerously aggressive, “self-injurious” behaviors. Keeping Jackie safe has become an increasingly difficult, costly challenge.
Jackie received a state Medicaid waiver for in-home help when she was around four years old. But Sibley says the family struggled to find the long-term care her daughter so desperately needed.

“It’s very hard to find staff, especially when there are challenging behaviors involved. Most of the people that we had helping us would quit,” Sibley said.
After exhausting her options in Michigan, Sibley found the Kennedy Krieger Center in Maryland, a residential facility that specializes in treating severely autistic children. After a year on the waiting list, Jackie was admitted in March 2018. Sibley says that her daughter has received “phenomenal” care there.

Kennedy Krieger is typically just a three-to-six-month program. Healthcare providers there, knowing there were few options for Jackie back home in Michigan, extended her stay to over a year. That extended stay has been costly for Sibley’s family. The state of Michigan now considers Jackie to be a resident of Maryland. That means she’s ineligible for the Medicaid waiver she’s had since she was a young girl. Sibley’s private insurance stopped covering Jackie’s treatment at Kennedy Krieger — which costs $127,000 a month — in August.

No one’s been paying the bill since then.

Texas - Families Struggling To Find Care For Adults With Disabilities
By Julie Chang, Austin American-Statesman via Disability Scoop, February 26, 2019

Since 43-year-old Ivana Schnars moved into a nursing home in Pflugerville, her mom Sue Schnars has tried to make it as comfortable as the home where her daughter spent most of her life. Citrus essential oil perfumes the dorm-like room. Relatives have left sweet messages on a white board. Pink decorations dot the walls.Unable to care for Ivana Schnars, who is nonverbal and uses a wheelchair, on her own, Sue Schnars moved her out of their North Austin home in August.

Schnars had trouble finding and keeping caregivers for Ivana. With the state’s Medicaid reimbursement she could only pay personal attendants $11 an hour without benefits.

“I agonized over this decision,” said Schnars. “She’s my daughter and I love her. For 43 years, I kept her home. For 43 years, I was able to make sure she was safe and clean and that she had everything that she needed. People at the retirement home are wonderful, but they’re not me.”

Schnars is using her daughter’s social security income to pay for the nursing home.

For nearly a decade, the state has not increased the payment rates of personal attendants in Community Living Assistance and Support Services, the Medicaid program that covered care for Ivana Schnars and 5,600 other Texans. The state sets the attendant rate in the program at about $13 an hour but after administrative fees and payroll taxes are shaved off, the rate families can pay attendants is lower.

Additionally, the state cut the attendant rates of two other Medicaid programs for individuals with disabilities — Texas Home Living and Home and Community-based Services —by 21 percent last year to $17.73 an hour to align the rates with other Medicaid programs. The decision affected caregivers for about 8,000 people in both programs. Dozens of individuals with disabilities and their family members had pleaded with the agency to reconsider the cuts.

The cuts saved the state $26.6 million over a two-year period. Texas Home Living, which providers say has long been a financially difficult program to run, has been hardest hit by the cuts — 19 providers have terminated contracts.

Rhode Island - Caregivers for People with Intellectual & Developmental Disabilities Need a Living Wage
By Steve Ahlquist, Uprise RI, February 27, 2019
Family members of Rhode Islanders living with intellectual and developmental disabilities, direct service professionals (DSPs), labor leaders, and legislators are calling on the General Assembly to pass legislation that gives DSPs a living wage. House bill H5338, sponsored by Representative Evan Shanley and co-sponsored by 48 other House members, including Democrats and Republicans, will move DSPs to a $15 minimum wage over the next two years. A companion Senate bill sponsored by Senator Louis DiPalma was introduced Wednesday.

Noelle Siravo spoke to me about her son, an adult male dependent on the care provided by DSPs. “It’s extremely difficult to manage him 24/7 so I look forward to all the support I can get,” said Siravo. The care providers “go above and beyond for the menial amount of money that they make doing this.”

“This act would require certain employers who provide services to people with developmental
disabilities to pay their employees no less than $13.77 per hour commencing July 1, 2019 and $15 per hour commencing on July 1, 2020,” reads the legislation. “This wage increase shall be funded by increased appropriations to the department of behavioral healthcare, developmental disabilities, and hospitals.”

“The selfless and dedicated care and work that is delivered by our state’s caregivers is a vital service to some of Rhode Island’s most vulnerable citizens,” said Senator Louis DiPalma (Democrat, District 12, Little Compton, Middletown, Newport, Tiverton). Yet, while these individuals care for our friends and loved ones, they are experiencing tremendous financial hardship resulting from less than adequate wages. It is time that we recognize the valuable contributions they make to our society and give these caregivers the living wage that they deserve.”

New York - State Launches Developmental Disability ID Cards
By Bethany Bump, Times Union via Disability Scoop, February 27, 2019
New Yorkers with developmental disabilities or their loved ones can now apply for a state-issued identification card designed to ease encounters with first responders.The card, made possible thanks to a 2018 state law, contains basic information such as name, address and date of birth, as well as emergency contact information. Most importantly, it contains special information about a person’s disability and a disclaimer that advocates hope will smooth out interactions with law enforcement and emergency services personnel.

“Nonverbal, does not make eye contact, does not like to be touched, is non-violent, likes to be called Johnny, pica, uses a wheelchair,” is one example the state shared on a sample card.
The disclaimer on the front will read: “I have a developmental disability. I may have difficulty understanding and following your directions or may become unable to respond. I may become physically agitated if you prompt me verbally or touch me or move too close to me. A developmental disability is not an excuse for illegal behavior. I am not intentionally refusing to cooperate. I may need your assistance. Please see the back of this card.”

New York residents interested in obtaining a card, either for themselves or a loved one, can request one online. The cards are free and voluntary.

VOR Bill Watch:
There are currently seven bills in Congress (four in the House of Representatives with three 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 text of the bill has not been released, but we expect that it will seek to 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".

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]
Notice: Meetings of the President's Committee for People with Intellectual Disabilities (PCPID)

The Administration for Community Living announced earlier this week that there will be two meetings in March to prepare their 2019 report to the President. Currently, the report is a self-congratulatory piece on their work to move all individuals with IDD to full integrated employment, close sheltered workshops, eliminate 14 (c) wage certificates.

In their discussions, one member of the committee have raised the matter that some individuals will never be able to participate in competitive integrated employment and that the opportunities for work that these individuals currently enjoy will be taken away from them, resulting in their spending hours every day on the sofa watching television or being driven in a van to the mall. Nonetheless, the committee plans to move ahead with the elimination of these programs.

What has happened to our system, that the people charged with protecting and providing services for the IDD community have turned their backs on the most severely disabled members of that community?

The PCPID meetings are open to the public, though the public is not allowed to comment. The schedule for these meetings is:

Monday, March 4 - 11:00 a.m. to 12:30 p.m. (EST) . This is a virtual meeting, via telephone. Members of the PCPID may speak, the public may listen in. To attend the meeting, dial (888) 949–2790 and use pass code 1989852.

Thursday, March 21, and Friday, March 22, from 9:00 a.m. to 4:30 p.m. (EST) (same time both days)
Hubert H. Humphrey Building, 200 Independence Ave. SW, Room 800, Washington, DC 20201 . The public is invited to attend, but not comment, or to listen in remotely, at (888) 949–2790 using the pass code 1989852.

The American Health Care Association / National Council for Assisted Living

AHCA/NCAL’s Annual Hill Fly-In Event
Wednesday, March 6, 2019

AHCA/NCAL’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington, D.C., for our annual Hill Fly-In event on Wednesday, March 6, 2019.

Participants will hear from Congressional speakers and others. The event runs from 8 am – 10:15 am ET. After the morning event is over, the ID/DD providers will head to Capitol Hill to discuss critical issues, including Medicaid.

If you have any questions relating to this event or would like to attend (it is free to attend for anyone interested, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services,  Dana Halvorson .  

VOR's 2019

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

Plan now!
This will be an important year for I/DD advocacy
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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