VOR Submits Testimony for Record Asking Congress to Prohibit Federal Funding for Forced Deinstitutionalization; Hundreds of Choice Advocates Share Their Support

VOR is a national organization that advocates for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).  VOR calls on Congress to prohibit the use of U.S. Department of Health and Human Services’ (HHS) appropriations in support of deinstitutionalization activities which evict eligible individuals with I/DD from their HHS-licensed and funded Medicaid homes, in violation of federal law.

Read VOR's Testimony Here

588 advocates for family members and friends also submitted a statement for the record in support for VOR’s testimony, and many others submitted their own testimony.


Home is Where the Heart Is

The Coalition for Community Choice (CCC) is a unified voice for increasing options and decreasing barriers to housing choices.

By Desiree Kameka, Director of Community Education & Advocacy, Madison House Autism Foundation; and Tamie Hopp, Director of Government Relations & Advocacy, VOR; Originally published in EP (Exceptional Parent) Magazine (April 2014), excerpts posted here.

Did you know

  • In the next decade, over 800,000 on the autism spectrum will transition to adulthood. 
  • Almost all states have waitlists for accessing adult support services, yet the average growth of funding nationally is only 3.2%.
  • Almost one million individuals with intellectual and/or developmental disabilities (I/DD) are still living with caregivers over the age of 60.

In response to these staggering statistics, there is a movement of families and local organizations working together to create sustainable solutions to this national housing and support service crisis. They are organized and gathering information at conferences, many have joined together for advocacy as the Coalition for Community Choice, and are sharing solutions at the new Autism Housing Network.

Read full article (EP Magazine, April 2014)

VOR Webinar Series: Regional Meetings - The Need for Advocates to Act Global and Local

Hosted by VOR's David Hart and Geoff Dubrowksy, VOR's "Regional Meetings: The Need for Advocates to Act Global and Local" Webinar, was held Thursday, March 20 to discuss VOR's new vision for regional meetings between VOR members, families, guardians and like-minded advocates. We discussed the advantages to state-level and national advocacy, networking, and development when advocates in a region have opportunity to connect with one another. 

To watch a recording of the webinar, click here.

To download the presentation (PDF), click here


Coalition sends letter to CMS re: New "Community" Rule

March 5, 2014

A letter signed by 41 organizations, including VOR, was sent this week to Marilynn Tavenner, Administrator for the Centers for Medicare & Medicaid Services. Organizations, representing the Coalition for Community Choice, expressed “appreciation of the earnest effort to balance many perspectives in your consideration of Home and Community-Based Services (HCBS) Settings Final Rule (CMS 2249-F/2296-F),” while also requesting that CCC have “opportunity to review proposed State Guidance Letters and provide input before publication.”

Read letter here

Kentucky: Adult abuse registry would protect elderly and disabled

The Courier Journal * January 25, 2013

While Kentucky maintains a registry of people found to have abused or neglected children, disability advocates say there is no accessible system to track personal caregivers who abuse, neglect or exploit elderly or disabled adults.

Since 2009, the Cabinet for Health and Family Services has substantiated more than 7,400 such allegations, state figures show. But most do not result in criminal charges, and the findings aren’t accessible to potential employers, according to the Kentucky Protection and Advocacy Division.

After a handful of failed attempts in recently years, advocates and several lawmakers are undertaking a new push in this year’s legislature with two bills to create an Adult Abuse Registry, aimed at keeping abusers from moving from job to job among group homes, personal care companies and families who hire such workers

Senate Bill 98 (SB 98), is sponsored by Senator Sara Beth Gregory of Monticello and co-sponsored by Senator Denise Harper Angel of Louisville.

House Bill 256 (HB 256), is sponsored by Representative Ruth Ann Palumbo of Lexington. 

Highlights of the Kentucky Adult Protection Registry Bill

Related news: 

Several years ago the Kentucky Cabinet for Health and Family Services (CHFS) was awarded $3 million federal grant (matched with $1 million in state funds) to provide national fingerprint background checks for caregivers.  In 2013, the Interim Joint Committee on Health and Welfare adopted the Kentucky Applicant Registry and Employment Screening Program (KARES) regulation, 906 KRS 1:190, to implement fingerprint background check program; KARES was officially implemented by the Governor implemented on December 10, 2013. KARES adoption is mandatory for all state-operated and owned long-term care providers. It is voluntary for all privately-operated facilities (e.g., nursing homes and 3-bed community homes), although there is much pressure for these to fall in line. The Adult Protection Registry legislation, if passed, would make it mandatory for them.

Read KARES Overview


Arkansas Legislators hear from families and VOR on importance of family decision-making and choice

On January 8, 2014, the Arkansas Legislative Council's Joint Hospital and Medicaid Study Subcommittee considered the value of Arkansas' Human Development Centers (HDCs), publicly-operated Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities. 
In addition to receiving presentations from the Directors of Arkansas' HDCs, expressions of support for HDCs and concerns about their future were expressed by ten family/guardian advocates, along with invited testimony from Darrell Pickney, President of the Families & Friends of Care Facility Residents (FF/CFR) (Jonesboro HDC), Jan Fortney, FF/CFR's Secretary (Conway HDC), and John Morris, an FF/CFR Member (Arkadelphia HDC). In support of this testimony, FF/CFR distributed a very helpful “What Legislator’s Really Need to Know” about HDCs handout and a compelling statistical presentation
Darrell also serves as VOR's Arkansas State Coordinator and the Subcommittee welcomed testimony from Tamie Hopp, VOR's Director of Government Relations & Advocacy: 
    "Central to VOR’s advocacy is the highest respect and deference to the individual choice – true person-centered planning – and where necessary, the input of families and legal guardians.  Here, where the Subcommittee is considering the value of Arkansas’ five Human Development Centers, the proper place to start is with the view of the families.  
    "In the case of Human Development Center residents, the input of families and legal guardians is vital to ensuring good care decisions. Over 83% of the residents have severe (18%) or profound (65%) intellectual disabilities and require the informed help of their families and legal guardians who know them best."
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