Speaking out for People with
 Intellectual and Developmental Disabilities

Social Media: Connecting choice advocates

VOR has released a series of Social Media "101s" as part of its social media campaign, coordinated by VOR's Marketing/Communication Committee, to enhance advocacy efforts by VOR members and like-minded choice advocates around the country on behalf of people with intellectual and developmental disabilities. Social media can also assist in VOR's overall growth through greater awareness, involvement and communication by and between current members, new members and volunteers. To date, VOR has received tips on using Twitter (Part 1 and Part 2), Facebook, and LinkedIn (see also, Why WE - VOR and our advocates - Need Social Media and Facebook Advocacy in Action).

VOR will continue to distribute Social Media tips to its members. To receive these tips directly, along with a VOR Weekly News Update (distributed each Friday) and regular media and legislative action alerts, we invite and encourage you to join VOR.

If you are already a member and/or would like to learn more, here are additional ways to connect with VOR:

Twitter (@VOR_NET)

Facebook (/VOR)

YouTube (VOR4Choice Channel) (See also Videos)


Linked In (Search for "VOR" under companies)











Linda Blumkin, J.D. (VOR Member): New York Olmstead Public Forum

Testimony by Linda Blumkin at the Olmstead Public Forum 9/28/2012

My particular focus is on the needs of people like my daughter Jessica, who is almost 23 years old and has a rare genetic disorder, Cornelia de Lange Syndrome, that  resulted in mild mental retardation, autism, and (with the onset of adolescence) challenging behaviors including physical aggression. She attended an out-of-state residential school from 2004 through her “aging out” date of June 2011 – one of the 650 NYS students sent away to such schools at an annual cost of $140 million.

As the Supreme Court said in the Olmstead case: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings.”

.  .  .

Would I place my daughter Jessica at Misericordia or a New York version of Misericordia [private ICF/MR]? In a heartbeat.  But Misericordia doesn’t have room for all of the Illinois residents who need its help, and there is no Misericordia equivalent in New York. Nor is New York developing smaller campus-based programs for people whose needs are greater than an isolated group home in the community can accommodate, perhaps with a few cottages on a common property, sharing facilities on the property like a day program (for people who realistically cannot handle daily trips from their residence to  day hab or a  job), nursing support, behavior management specialists and other services.

Instead, the isolated group home in the community becomes OPWDD’s take-it-or-leave it alternative. And for people like Jessica, this means that if the group home staff cannot manage their challenging behaviors, they call 911 and the police come, handcuff the unmanageable person (even the ones like Jessica who are 4’7” tall) and take them to a psychiatric emergency room to be “stabilized” before they are returned to the environment incapable of managing them. After a few of these roundtrips, the person then moves from OPWDD’s budget to that of the Office of Mental Health as they are shipped off to long term psychiatric hospitalization in a facility ill-equipped to address the behavioral issues of someone with autism or other developmental disabilities.

Read Linda's complete testimony here.

VOR's Cristy Dwyer: New York's Olmstead Plan Must Include Choice

September 28, 2012

Olmstead Requires Personal Choice
Public Comments for the Proposed New York Olmstead Implementation Plan
Statement by Cristy Dwyer, VOR New York State Coordinator

New York State is developing its “Olmstead Implementation Plan.” Three public forms are being held to solicit suggestions from seniors, individuals with disabilities, families, advocates and providers of services on ways to improve the delivery of services to people with disabilities in the most integrated settings.

VOR’s New York State Coordinator, Cristy Dwyer, provided testimony on Friday, September 28, 2012 one of the three public forum opportunities.

“Olmstead requires consideration of personal choice, not just one choice. Forcing “integrated community settings” on every disabled person is the wrong starting point for Olmstead implementation,” stated Ms. Dwyer.   “Instead, consistent with the decision, the Olmstead Implementation Plan should, with public input, determine how to meet its obligation to provide range of quality services to individuals with disabilities so that every individual can be served in the “most integrated setting appropriate to their needs,” from small to large public and private settings.”

Read VOR's complete testimony here.

VOR and PHA-Sonoma Support California Senate Bill 1522

July 26, 2012

VOR is a national organization that advocates for high quality care and human rights of all people with intellectual and developmental disabilities (ID/DD). The Parent Hospital Association of Sonoma Developmental Center (PHA Sonoma) is a VOR affiliate. Together we support the right of individuals with ID/DD to choose from a full array of residential care.

We join together in our support for SB 1522, a bill calling for even more developmental center resident protections.

Read More.

VOR Submits Federal Comment: Defining "Community"

June 28, 2012

VOR submitted detailed comments in response to proposed rule CMS-2249-P2 (May 2, 2012) with regard to “Medicaid regulations to provide home and community-based setting requirements of the Affordable Care Act for the Community First Choice State plan option," and for the Medicaid Home and Community-Based Services (HCBS) Waiver, including defining and describing "community."

Summary of Comments

1. Federal law and individual choice

Amendments are needed to ensure adherence to the choice principles espoused in the preamble of the proposed rule and required by federal law. Olmstead supported a range of options. The Court expressly recognized “institutional care” as one legitimate option. The proposed rule must take care not to further limit choice by reducing funding for innovative programs which CMS – not the Supreme Court or even Medicaid law – deem “institutional.”

2. Principles of “community” still biased, risking support for quality residential programs that, in fact, “promote independence and integration”

In the spirit of choice, and in furtherance of federal law, VOR strongly urges CMS to reconsider its position with regard to the provision of home and community-based services on ICFs/MR campuses and planned residential communities for people with developmental disabilities.

We do not agree that proposals by states to provide HCBS on ICFs/MR campuses or planned residentialcommunities “clearly exceed reasonable standards for HCBS,” (77 FR 26378) especially when the provision of such services meets needs, is sought by individuals and their families, and would ensure good outcomes for those served.

VOR Submits Federal Comment Urging Independent Oversight of P&As

June 28, 2012

Summary of Comment

In principle, VOR agrees that each State Protection and Advocacy System (P&A) should be subject to accountability, including but not limited to annual performance reports if independently audited. We remain very concerned that nearly all measures of accountability for P&As are self-reported, including annual program performance reports. Although subject to reauthorization, Congress has not reviewed DD Act program outcomes and considered reauthorization since 2000.

It is alarming that these self-developed annual program performance reports will be used by ADD to “respond to administration and congressional requests for specific information about program activities” and “to submit a Centennial Report to Congress.” These are self-reporting activities that are of little objective value in measuring “Performance and Results.”

At minimum, VOR suggests that P&A program performance reports be subject to an independent audit to ensure accuracy. Additionally, organizations representing residents of licensed intermediate care facilities for persons with mental retardation (ICFs/MR) and their families, and others, should be allowed to review these reports prior to publication and be provided an opportunity to respond, with dissenting perspectives included in the reports submitted to the Administration and Congress.

As we have commented in past submissions, performance reports prepared by the very staff who are directly accountable for grant outcomes have no practical utility. Such reports will provide little insight into the actual effectiveness of these programs for their intended beneficiaries.

Read More.

Read related comment regarding state developmental disabilities council performance evaluations.

Read VOR's Urgent Call for Reform and Reauthorization of the Developmental Disabilities Assistance and Bill of Rights Act.