October 22, 2014
In a letter sent today, three nonprofit advocacy organizations joined together asking the State Legislature to make important changes to legislation passed recently.
VOR, the Massachusetts Coalition of Families and Advocates (COFAR), and CCMR (Malden, MA), all support access to high quality care across a continuum of care options for people with intellectual and developmental disabilities (I/DD). In a letter to the legislature, they sought changes to the National Background Check Law, the Eligibility and Autism Commission Law, and the Real Lives Law, all passed recently.
“While all three laws,” the organizations wrote, “advance certain rights for people with I/DD, they also all contain shortcomings that will, upon implementation, harm the very people these new laws aim to assist.”
The letter enclosed three position papers, each calling on the legislature to “fix these shortcomings so that individuals with I/DD can realize the full and favorable impact of each new law.”
• "Long-Awaited Background Check Law Requires More Waiting. Advocates Call on Legislature to Hasten Implementation" (October 2014)
• "New Eligibility and Autism Commission Law is Limiting; Advocates Call on Legislature to Change the New Law" (October 2014)
• “‘Real Lives’ Bill misses its own mark by putting financial planning and control in the hands of strangers. Advocates call on Legislature to make necessary changes to protect individuals” (October 2014)
Distributed by: The Greater Salisbury Committee, Inc.
October 10, 2014
Related news: State health officials: 'No plan to close Holly Center' (citing James Anzalone's, Former Rosewood Director, Letter)
Click here for PDF
The Greater Salisbury Committee expresses appreciation to VOR, a national advocacy organization, for its help with this document.
Some history: From whence we came
In 1965, then-Senator Robert Kennedy toured the infamous New York Willowbrook institution and observed, grimly, that residents were “living in filth and dirt. He labeled the facility a “snake pit.”
The atrocities of Willowbrook ushered in massive reform, beginning in 1971 with the development of Medicaid Intermediate Care Facilities for Individuals with Mental Retardation (ICFs/MR). The medical term “Mental Retardation” is no longer used because it is considered politically incorrect; however it does define an incurable cognitive impairment, unlike various other forms of mental illness that are treatable. “Intellectual Disability” is now used and Holly Center is referred to as an ICF/IID – an Intermediate Care Facility for Individuals with Intellectual Disabilities.
As the ICF/IID program grew, so did calls for housing alternatives. In 1981, Congress responded by providing Medicaid funding options for home and community bases services (group homes).
It was not long before efforts to “rebalance” our system of care shifted from expanding options to the dramatic reduction of ICFs/IID, over the strong objections of individual residents and their families and legal guardians, and in spite of well-publicized human tragedies. The pendulum has now swung to the opposite extreme and the option of ICF/IID care is nearly gone.
What about Olmstead?
Source: KnowWho, September 2014
Click here for publication
September 9, 2014
Detailed comments are here. An Executive Summary follows.
The Kentucky Concerned Family Network (KCFN) and VOR appreciate this opportunity to submit comments in response to the draft Kentucky Olmstead Compliance Plan, released for stakeholder input by the Kentucky Cabinet for Health and Family Services (CHFS) on August 18, 2014.
The OCP is very broad and reaches across several different disabilities. It will, if implemented as proposed, benefit many persons with disabilities, negatively impact others by limiting their residential choices, and will cause unintended consequences for an unknown number of persons as new rights are embraced, examined, and experienced without the proper oversight, services and even temporary support.
The limited public comment opportunity is a major concern.
In addition to Strategy 6.3 noted above, the OCP in strategy 6.4 cites a P&A lawsuit settlement against the Cabinet for Health and Family Services (CHFS) that requires 600 persons to be transitioned out of group homes and into community residences over a three year period. The first 100 transitions are to be completed by October 1, 2014, less than 30 days from now.
We view quotas as inconsistent with the letter of and spirit of the Olmstead Supreme Court decision. Quotas are antithetical to, and prevent, individual choice and person-centered planning. Olmstead does not require that individuals be forced out of a good placement against their choice and best interests; indeed the Court required that individuals do not oppose transition to the community. The overall tone of the OCP suggests an ideological deinstitutionalization bias that is unnecessary while seeking to obtain the many rights due to persons with a disability.
The role of families and legal guardians:
The OCP displays a complete disregard for the important role of families and legal guardians. We expressly request the inclusion of “individual choice and need, with required family and guardian input” in the OCP’s goals, as well as an expansion of the Regional Olmstead Committee (Strategy 6.6.) to include ICF family representatives and providers (see Attachment B, OCP redline). Furthermore, while we support mentoring relationships (Strategy 4.4), the OCP must expressly indicate that mentors are only assigned to individuals upon informed consent of the individual, or where appointed, his/her legal guardian, whose decision-making authority is not affected by the appointment of a mentor (see Attachment B, OCP redline).
Although assessments of the person with a disability are mentioned in the OCP, a single specific tool is not defined. In fact, different Kentucky HCBS waivers may use different assessment tools. Regardless of the assessment tool or tools used to create the Person Centered Plan of Care, it is critical that parents, guardian and family members have the right to take part in all assessment or evaluation meetings, and that the tool(s) used is/are available as public information. An appeal process for family and legal guardian concerns should be an integral part of the assessment planning in every HCBS waiver.
CMS Final HCBS Rule:
The Kentucky Department of Medicaid Services and several other CHFS departments are just now beginning a multi-year process to implement the CMS Final Rule HCBS waiver changes in the majority of Kentucky HCBS waivers. It is unclear how the OCP will add to the complexity of this effort, or even if it will be possible to manage both efforts at the same time.
Given the breadth and depth of the OCP, the Executive Summary and following comments touch on only our primary concerns. Going forward, KCFN and VOR expressly request full inclusion in any future planning, drafting and implementing effort.
VOR's strength rests on the time, talent and ingenuity of our board and committee members, with much of the work getting done in committee.
VOR has a number of standing committees and we’d like to make sure that VOR members have the opportunity to indicate your interest to serve on the committee(s) that reflects your interests and availability. We are also seeking candidates for VOR's Board of Directors for the term beginning July 1, 2015.
A volunteer form and descriptions of each VOR Standing Committee and form to indicate in your interest in serving on a VOR Committee and/or the VOR Board of Directors is available here.
Forms can be returned to:
(Sybil Finken, VOR Immediate Past President)
U.S. Mail: VOR, P.O. Box 1208, Rapid City, SD 57709
Thank you for your consideration.
Ann Knighton, VOR President
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 the Senate to prohibit the use of U.S. Department of Justice 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
Nearly 500 advocates for family members and friends also submitted a statement for the record in support for VOR’s testimony.