March 15, 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

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

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.
National News:
President Trump Releases 4.75 Trillion Budget Plan, Proposes Cuts To Medicaid, Other Disability Programs

According to Kaiser Health News, some of the health care cuts include:

  • Shaving $818 billion from projected spending on Medicare over 10 years
  • Cutting nearly $1.5 trillion from projected spending on Medicaid and transforming the program into a block grant system (a controversial idea that has received a lot of criticism in the past, even from Republican governors)
  • Slashing spending on the National Institutes of Health by $4.5 billion, with the National Cancer Institute absorbing the largest chunk of that cut
  • Cutting HHS funding to $87.1 billion, which would be 12 percent less than in the spending plan Congress adopted for this fiscal year

Although the proposal will be dead on arrival in Congress, it still serves as a good road map for the administration’s priorities and Trump’s re-election campaign.

For further reading:

State News:
New Jersey - NJ Official Says State Disabilities System in 'Considerable Disrepair'
By Kim Mulford, Cherry Hill Courier-Post, March 13, 2019
Patients left abandoned in hospitals. Reports of aggression and self-injury. Repeat calls to 911. Fruitless visits to emergency departments. Underpaid staff and low reimbursement rates. 
State lawmakers this week heard from families, healthcare providers, nonprofits and a state ombudsman who asked them to overhaul a system seemingly unable to help New Jerseyans affected by disabilities and severe challenging behaviors.

In testimony before the Assembly Human Services Committee this week, parents Melanie McGackin, Donna Icovino and Lisa Parles shared stories and offered specific solutions, including the development of a specialized neurobehavioral unit similar to Johns Hopkins Kennedy Krieger Institute in Baltimore, Maryland. 

"New Jersey has spent well over a decade studying the unmet needs and significant obstacles encountered by developmentally disabled individuals in crisis, who are in desperate need of appropriate behavioral and mental treatment," said Icovino, who helped lead the state's Dual Diagnosis Task Force. Her son lives in a South Jersey group home.

"Because this group of individuals have been terribly neglected in the past," she added, "taking immediate action has become an absolute moral imperative."
Indeed, Gov. Phil Murphy's administration inherited a system in "considerable disrepair — one that was far from meeting the needs of many New Jersey individuals and families," said Paul Aronsohn, the state ombudsman appointed by Murphy last April to work with those affected by developmental or intellectual disabilities. 

In his 17-page annual report sent this week to
lawmakers and department heads, Aronsohn outlined complaints from families, nonprofits and service providers. They included: 
  • Widespread difficulties in accessing proper medical, dental, mental and behavioral care
  • A need for more housing, program and employment options
  • A lack of governmental transparency
  • Poor customer service, unreturned calls and emails, and unjustified service denials from state agencies.

"I think fixing that system and investing the resources could pay off both in terms of better outcomes for individuals, as well as better financial outcomes for taxpayers," said Aronsohn, whose three siblings were each diagnosed with disabilities. His report recommended the Murphy administration study ways to simplify and improve the system. 

Lisa Parles of Glassboro said the stories of affected families are rarely told or addressed by policy makers.

An attorney and the mother of a 28-year-old nonverbal man with multiple disabilities, Parles said families struggle for access to effective medical care, appropriate in-patient programs and quality residential and day programs. 

"They suffer in unimaginable solitude, as their loved ones engage in dangerous and sometimes life-threatening behaviors," Parles said. "In my law practice and in my work nationally, I've met families whose loved ones have ingested batteries, jumped from moving cars, eaten medical dressings and even extracted their own teeth." 

Mary Detri, a representative from the New Jersey Hospital Association, told the committee that patients with disabilities and severe behaviors are sometimes brought to emergency departments and left without a place to go.

Patients are hospitalized for months without a medical problem, and costs associated with their stay are absorbed by the hospitals, she said. 
Detri said she also participated in the state task force, but its recommendations were left mostly "in a drawer."

New Jersey - Lawmakers Seek to Improve Care of Developmentally Disabled
By Lilo H. Stainton, NJ Spotlight, March 12, 2019
Assembly committee approves ‘bill of rights’ for family members and a study of how caregivers and emergency personnel respond during a crisis

Family members of people with developmental disabilities would have a legal right to information regarding treatment of their loved one — and to get prompt, clear and respectful responses from public agencies and care providers — under a “bill of rights” proposal that advanced Monday.

The Assembly Human Services committee voted unanimously in favor of both this bill and another measure designed to improve emergency care for some of the Garden State’s most vulnerable residents. Advocacy organizations also offered their support for the measures.

The “bill of rights,” first introduced nearly eight years ago, would require that agencies and organizations serving individuals with developmental disabilities provide information and access to certain authorized family members. The second proposal would require state officials to study certain emergency responses involving individuals with disabilities and propose a uniform protocol for addressing these types of crises.

The champion of both bills, Assemblywoman Valerie Vainieri Huttle (D-Bergen), said they grew out of concerns she has heard from family members struggling over the care of individuals with severe developmental disabilities.

“It has always been an issue for guardians and family members to gather information” about their loved ones, she told the committee. “It’s not as urgent as it used to be,” she added, “But with that said, it’s always better to codify something into law.”

Creating a 10-point bill of rights:
Some of these challenges were profiled in a four-part series reported by Briana Vannozzi of NJTV News, a sister organization of NJ Spotlight. An estimated 150,000 Garden State residents have intellectual or developmental disabilities, advocates note.
New Jersey law already guarantees individuals with disabilities certain rights — including privacy, respect, and the right to associate with others as they choose.

The Garden State is not alone in its quest to expand protections for guardians. Legislation under consideration in New York would provide similar rights to family members who are legal guardians of an individual with developmental disabilities under some circumstances.

The family-members bill, (A-3477) sponsored by Vainieri Huttle alone, would create a 10-point “Bill of Rights for Authorized Family Members of Persons with Developmental Disabilities;” it also would define “authorized family members” as a parent who is already a legal guardian, or another relative named by the legal guardian.

In addition to requiring respectful interaction, the legislation would give authorized family members the right to receive basic treatment and medical information needed to make an informed decision, to be provided with responses in writing, and to have calls or questions addressed in a reasonable amount of time and in language that is “understandable.” It would also require service providers to outline what families should expect and explain the options available if they feel their loved one is not getting adequate care.

Related Stories:

Washington - Senate Backs Measure to Improve Care for Developmentally Disabled Washingtonians
By Action News Staff, KEPR-TV
Wednesday, March 13th 2019
Wednesday was the final day of the 2019 Legislative session for the Senate to act on bills that are not part of the upcoming budget.

The Senate today gave unanimous approval to [two] bills from Sen. John Braun aimed at addressing concerns about the care of developmentally disabled Washingtonians and the management of health care for low-income residents.

“It’s wrong that developmentally disabled people who don’t have medical needs are effectively being abandoned at hospitals – but it happens, and the state agencies who are ultimately responsible for their care need to be held accountable,” said Braun, R-Centralia.

His bipartisan legislation, Senate Bill 5483, is inspired by a report from the state’s developmental disabilities ombuds that was featured in a January edition of Braun’s Economic Sense policy report.

The bill calls for the state Department of Social and Health Services and its Developmental Disabilities Administration to track and monitor client hospitalizations and improve the transition of clients from service providers.
Also, hospitals would be reimbursed by the state when they are essentially forced to care for developmentally disabled people who have no medical need requiring hospitalization.

Braun’s SB 5523 is intended to bring more accountability to the delivery of health care to low-income Washington residents on Medicaid – the focus of another Economic Sense paper, issued in February.

“It costs our state’s taxpayers nearly $6 billion a year for what is called ‘managed care,’ yet the companies receiving that money can’t manage to provide care at levels even close to the national average,” Braun said. “That’s unacceptable, particularly when some of the measures are related to the health of women and children.

“This bill would tie performance to payment – and if performance improves, then both the clients and the taxpayers will benefit.”

Idaho - SWITC Advisory Board Looks Into Different Licensing Options
By Emily Lowe, Idaho Press, Mar 11, 2019
The Southwest Idaho Treatment Center in Nampa, peppered with controversy in recent years, continues to wrestle with its next step.

The center’s advisory board met Monday on SWITC’s campus to discuss what population falls within the responsibility of the state-run residential center, and whether or not it should take voluntary placements.

The center is licensed under Intermediate Care Facilities for Individuals with Intellectual Disabilities, meaning it can accept residential clients who are committed, either civilly or through a competency hearing, or voluntarily placed. Currently, however, the center is not accepting voluntary placements, administrator Jamie Newton said, one reason she suggested moving to different licensing guidelines.

“I don’t believe the ICF is the way to go,” Newton said.

When clients are voluntary-committed, by a parent or guardian for example, there’s no clear guideline on who is in charge of treatment options, which means that sometimes the department and the guardian disagree, Newton said. Getting any kind of treatment can take a while.

Board member and Canyon County Sheriff Kieran Donahue said the issue may have to be addressed in legislation.

Many board members echoed the sentiment, but they didn’t land on a new licensing model yet. They reviewed four options, ranging from keeping the ICF licensing but changing some statutes, to only providing coverage to committed clients and changing the licensing.

A change in how SWITC is licensed does not mean it would close.

“We have to be careful that we’re not getting rid of this place,” Shirley Beale, a board member and mother of a current resident said in Monday’s meeting. “We need to add to it not take away.”

Tennessee Lawmakers Propose Bill to Support Families Financially Burdened by Caring for Kids with Disabilities
By Jessica Bliss, Nashville Tennessean, March 13, 2019
There are approximately 3,600 Tennessee children with long-term disability or complex medical needs who live at home with their families and are not currently on TennCare.

On Tuesday, lawmakers filed a bill amendment that could help these families by creating a pathway to Medicaid services for their children.

The rationale of the legislation, which was introduced by Rep. Sam Whitson (R-Franklin) and Sen. Kerry Roberts (R-Springfield), establishes that the financial and personal costs of caring for a child with severe disabilities are often "excessive" and private insurance is insufficient.

The House TennCare Subcommittee plans to discuss the bill in its hearing on Wednesday.

At the request of Chairman Matthew Hill (R-Jonesborough), Michelle Gross will also appear before the subcommittee to share her family's struggles. 

Gross is  single mom living at home with her parents and raising two daughters in Jonesborough, Tenn. One of her girls — a bouncy 6-year-old redhead named Asher — has severe physical and intellectual disabilities. 

"No one could possibly afford the type of care we are talking about without going tremendously into debt," Gross said.

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.
Bill Would Protect SSI Benefits For Couples Who Marry
By Robert Harding, The Citizen, via Disability Scoop, March 12, 2019

U.S. Rep. John Katko, R-N.Y., unveiled a proposal this month he says will eliminate barriers to marriage for people with disabilities.

Katko sponsored a bill that would protect Supplemental Security Income benefits for people with developmental and intellectual disabilities. Currently, when two people who rely on SSI marry, their benefits can be at risk because they must jointly report their income.

SSI is provided to people with disabilities who lack income. The assistance helps cover basic expenses, such as clothing, food and housing.

An issue paper published by the Social Security Administration in 2003 details how SSI benefits are affected by marriage. If two people who receive SSI benefits marry, they would receive 25 percent less than they would if they lived together but didn’t marry.

“People with intellectual and developmental disabilities should not have to choose between marriage and their disability benefits,” Katko said.

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:

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.


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
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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