Speaking out for People with
 Intellectual and Developmental Disabilities

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."

VOR submits testimony in response to California's proposed secured perimeter regulations

October 25, 2013

California is proposing to make permanent existing emergency regulations relating to 15 person home and community-based services (HCBS) waiver and Intermediate Care Facility homes with delayed egresses and secured perimeters for difficult-to-serve individuals with developmental disabilities. VOR's testimony raises questions with regard to the adequacy of minimum staffing criteria for resident safety, whether these residences will promote hoped for integration in any real and meaningful way (in contrast to the expansive campuses of existing public ICFs/IID), and raises the question of whether these homes will be eligible for HCBS funding based on current federal policy and proposed regulation which, if finalized, would redefine "community" for purposes of HCBS coverage.

Read VOR's testimony


Testimony of Kathleen Miller, President of the Parent Hospital Association of Sonoma Developmental Center

* Testimony of the California Association of Psychiatric Technicians

VOR's Quality in the Community Initiative

In 2013, VOR launched its Quality in the Community Initiative to proactively address the negative outcomes associated with unprepared community settings for people with intellectual and developmental disabilities (I/DD). The need for VOR's Quality in the Community Initiative is urgent. Deinstitutionalization - the closure of federally-licensed specialized settings - continues in earnest. As a result, individuals with profound I/DD, multiple disabilities, serious medical problems, and behavior challenges are removed from specialized settings to "community-based" settings often with poorly trained staff and inadequate health and safety measures in place. Predictable tragedies are well-documented and widespread. VOR's Quality in the Community Initiative aims to address this widespread concern by developing and promoting community care standards.

Read an overview of VOR's Quality in the Community Initiative

Read an article in EP Magazine about VOR's Quality in the Community the Initiative

Pennsylvania: Solving the guardianship challenge one group at a time

Tom Kashatus, the President of the White Haven Center Relatives and Friends Association, sought out to solve a problem that became apparent after the filing of a P&A filed lawsuit against Pennsylvania centers. 

Although the case has taken a positive turn – a federal appeals court has agreed to allow families to intervene – the case brought to the forefront the vulnerability of residents who don’t have guardians.  As filed, the lawsuit required that all residents who “did not oppose” be moved to smaller settings, even in situations where there was no family or guardian and the individual was unable to communicate. In these cases, silence was considered consent to move.

To help ensure that every resident was represented, Kashatus arranged for a group guardianship proceeding at White Haven Center. Thanks to the understanding of Judge Richard Hughes of Luzerne County Court of Common Pleas and the help of Wilkes-Barre, Pennsylvania attorney Frank Hoegen and his paralegals, Mary Wargula and Angela Simko, the White Haven Center Relatives and Friends Association, Inc., a 501(c)3, is now the official guardian on record for those adjudicated by the court as requiring guardianship. Association members are assigned to individuals and have the responsibility to be sure there is someone knowledgeable about the desires and needs of these residents. 

Prior to appointing guardianship, the Judge had to determine guardianship was appropriate. Attorney Charles Petrillo of Wilkes Barre served as court-appointed counsel for these residents for that purpose. “We couldn’t think of a better way for our Relatives and Friends group to carry out our mission on behalf of these residents,” said Kashatus who also praised the work of Judge Hughes, attorney Hoegen and his staff, and attorney Petrillo.  “Without their cooperation and expertise, we could not have helped these residents who needed us.”

“We couldn’t think of a better way for our Relatives and Friends group to carry out our mission on behalf of these residents,” said Kashatus who also praised the work of Judge Hughes and attorney Hoegen. “Without their cooperation and expertise, we could not have helped these residents who needed us.”

Oklahoma: VOR Submits Testimony in Support of Choice

October 23, 2013

VOR asks that the Oklahoma House Human Services Committee and full legislature reject and overturn the Oklahoma Commission for Human Services’ mandate to close both centers. We oppose closure at any pace; SORC’s hasty timeline for closure is especially irresponsible and will result in predictable tragedies.

VOR seeks the support of House Human Services Committee and full Legislature for continued and expanded long-term residential care and services at both NORCE and SORC for current and future residents, as well as “out-patient” services for non-residents [see, Section VII, THE SOLUTION: An Ideal Balance - Admissions and Expanded Services, page 13 (below)]. Both homes (NORCE and SORC) provide life-sustaining supports to long-served residents and have the potential to deliver specialized care to non-residents (“outpatients”) who may now be suffering for lack of access to specialists.

Quality and Choice Matter: One size does not fit all

Read VOR's Testimony

Read Testimony of Dr. Franklin Appl, parent and VOR Member


VOR Member Testifies In Support of Employment Choice

The New York Office of Persons With Developmental Disabilities (OPWDD) held “town hall” Community Dialogues around the state to hear from stakeholders regarding the employment options for people with developmental disabilities.

In an OPWDD summary of stakeholder feedback from these sessions, many stakeholders raised concerns about proposals which would limit the range of employment options available to people with developmental disabilities. Stakeholders expressed concerns about federal expectations with regard to competitive employment, with several witnesses speaking to failed efforts and the value – monetarily, self-esteem, and training – of sheltered employment options. Concerns were also raised about the interpretation of the Olmstead Decision and whether it requires workshops to be closed.

VOR member Linda Blumkin was among those testifying:

 “For those who are not capable of working in community settings but are still capable of work, and want to work, and enjoy the company of their colleagues and the staff at a sheltered workshop, this can be a meaningful alternative – and one vastly superior to spending their days in less productive (or nonproductive) activities at their residences.” (Testimony of Linda Blumkin, VOR member, before a New York Office for Persons with Developmental Disabilities Town Hall Meeting (September 13, 2013).

Read more:
NY OPWDD Summary of Stakeholder Feedback
Linda Blumkin’s Testimony