VOR has written a letter welcoming the members of the 116th Congress. In the letter, we introduce present our views on choice in residential care and employment opportunities, and our hopes that they will re-evaluate the system and the direction it has taken in the last several decades.

Download VOR's Letter to the 116th Congress here

On July 11th, Mary Lazare, Principal Deputy Administrator and Acting Commissioner on Disabilities at the Administration for Community Living (ACL) spoke at the Autism Society's 2018 Convention in  Washington, D.C. During her keynote speech, Ms. Lazare expressed recognition for Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) as part of the full system of care. While no recording of the speech exists, third hand accounts of Ms. Lazare's comments have spread throughout social media. "Community Only" advocates were outraged, and have raised their voices demanding retraction of her comments and calling for her resignation.

Class action lawsuits have closed many ICFs/IID and reduced options for those who need fulltime care

Federally-funded attorney groups have pursued at least 30 class action lawsuits against ICFs/IID, driven primarily by a bias against ICF/IID care. In fact, since 1996, every federally-funded lawsuit against an ICF/IID has been for the primary purpose of removing residents from their ICF/IID home (“community integration”); the condition of care at the targeted ICFs/IID was not at issue in any of these cases.

Fifteen of these cases have led to the closure of ICFs/IID, affecting thousands of individuals with intellectual disabilities.

Despite the fact that ICFs/IID are a residential option created by federal law and funded and monitored by HHS, most of these lawsuits are filed under the Protection & Advocacy (P&A) program, whose lawyers are also funded by HHS. Because one program authorized by HHS is suing another program authorized by HHS, these suits could be labelled HHS v. HHS.

Download case documentation here

On January 10, 2014, the Centers for Medicare & Medicaid Services (CMS) released a long-waited final rule (regulation) about home and community-based services (HCBS) provided through Medicaid’s 1915(c) HCBS Waiver program, 1915(i) HCBS State Plan Option, and 1915(k) Community First Choice. The final rule is the result of multiple proposed rules and public comments over the past five years.

The rule and related CMS fact sheets are available at www.medicaid.gov/HCBS.

Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) are not directly affected by this rule; however, the rule continues to demonstrate an ideological bias against disabled people who find friendships and benefits from living together and accessing services and amenities "under one roof.”  

Click here to read additional VOR Observations, Advocacy Opportunities, and an Overview of Key Provisions.

One of the most essential components of effective advocacy is the follow-up. Whether you participated in VOR’s 2011 Annual Conference and Initiative or not, check out this this webinar to learn how to continue your advocacy efforts from home and create long-term relationships with your Members of Congress and their staff. You’ll learn how to put together a winning site visit, where and how to connect with legislators at town hall meetings and quick and easy web 2.0 practices that will keep you on their radar screen. Your voice matters- not just in DC but throughout the year.

Resources:

* PowerPoint: Beyond VOR Advocacy Day: How to Keep Your Legislators Engaged Year-Round

* Use this template to develop a one-page leave behind about “intellectual and developmental disability” issues in your community.  If you don’t know the answers to all the questions, don’t worry! Just fill in what you can.

* Template Site Visit Packet, including:

*Site Visit Packet
*Top Ten Ideas for Site Visits
*Checklist for Setting up a Site Visit
*Frequently Asked Questions about Site Visits
*Sample Site Visit Agendas
*Draft Invitation Letter for Member of Congress/State Legislator
*Draft Invitation Letter for Staff

For the family members, friends and guardians of ICF residents, the consistent provision of highly specialized supports – assured by annual federal oversight surveys – is the highest priority.  Beyond care, however, these residents also have a life. They are integral members of their communities – both on campus and off.

Read VOR's "Intermediate Care Facilities: Inclusive Communities and Good Neighbors" (January 2011)

See also, VOR's comments to the Centers for Medicare and Medicaid Services which, in part, address defining “Home and Community-Based Services" [see VOR comments here (p.  5, Defining Home and Community Based Services)].