Ohio: OLMR (statewide family association) testimony (2006)

OLMR Response to the State Plan for the Ohio Legal Rights Service, Ohio's Protection and Advocacy System

Sonya Mawhorter, Executive DirectorOhio League for the Mentally Retarded (OLMR)
June 2006

The Ohio League For The Mentally Retarded (OLMR) is a consumer organization representing over 7000 Ohio citizens with disabilities and their family/caregivers.

We are pleased to have an opportunity to offer input into the state plan for the Ohio Legal Rights Service (OLRS), Ohio’s Protection and Advocacy system. We will provide some background in our comments, as well as make some recommendations.

Background:
A phenomenal accomplishment took place earlier this year when Ohio’s Governor and directors of ODJFS and ODMRDD sought to eliminate the ICFMR option from Ohio’s Medicaid plan and from the Biennium Budget. Over 31,000 Ohio consumers organized to oppose the elimination of the ICFMR program and to make their voices heard to the Ohio legislature and a Special Master reviewing the Martin Law Suit, filed by OLRS sixteen years ago. These two events-the activity in the Martin case and the proposed elimination of the ICFMR program in Ohio were major consumer issues and both were either initiated or supported by OLRS.

During the sixteen year life of the Martin lawsuit[1], OLRS staff sat on numerous policy making and policy influencing committees in state government, always articulating the same philosophy: that mrdd citizens did not want ICF’sMR or state operated developmental centers, and that thousands of Ohio citizens were clamoring to get out of these facilities in exchange for community based residential services.

OLRS used their influence over the sixteen year life of this law suit, to foster a hostile environment among advocates who, like OLMR, believe that developmental centers and private ICF’sMR are an important, necessary consumer option in the mental retardation service delivery system.  OLRS systematically disengaged from discussions with advocates who asked OLRS for support in preserving the developmental center and ICFMR placements that we know to be important for thousands of Ohio’s most profound and severely mentally retarded consumers. Even when the Cincinnati Enquirer, the Akron Beacon Journal and the Columbus Dispatch published stories indicating widespread abuse in the community system in Ohio-OLRS remained silent and continued to perpetuate the myth that large facilities were bad, and small “community” settings were good.

OLRS engaged in the development of an illusion that thousands of Ohio consumers were not only clamoring to get out of these facilities, but that the “community” settings that OLRS was advocating for, were free of problems. That illusion was shattered when the 31,000 consumers offered up their support for and demand for developmental centers and ICFMR services in Ohio.

In the weeks prior to a final vote on the Budget Bill, over 31,000 Ohio consumers and their guardians, signed petitions urging that private and state operated ICFsMR be maintain as a needed and appropriate option for individuals with mental retardation and developmental disabilities. OLRS was curiously silent and inactive during this fight. While they could have used their role as Ohio’s P&A system to fight the potential dismantling of the ICFMR program in Ohio, or to file some action to stop the elimination of the much needed CAFS program, they did nothing. In fact, they in effect supported the elimination of the CAFS program and the ICFMR program in Ohio by offering up comments like this one made at a Summit on MRDD held earlier this year:  “elimination of the ICFMR program is inevitable, and consumers want ‘community’ placements instead” (OLRS’s Chief Legal Counsel Mike Kirkman).

OLRS has failed miserably to act in the best interest of thousands of Ohio’s citizens whose care and welfare they are charged to protect.

An OLMR member once called OLRS to ask for assistance in getting her adult child, placed in a state operated developmental center. She was told, “ We don’t help place people in institutions, our mission is to get them out of institutions.”

OLRS could not be bothered with the facts in the case; an aging parent with a severely mentally retarded 47 year old daughter, who required 24 hour per day care, medical treatment and life support. They did not care that the mother lived in rural Ohio, and that there were no community based options in place for her daughter. They were only concerned that their mission to close all large facilities continue.

Our question for those who are invested with funding, monitoring and overseeing the day-to day operations of OLRS is this: “Where is the evidence of OLRS’s advocacy on behalf of those 31,000 consumers who are demanding developmental centers and private ICF’sMR as a viable part of the system?”

While 31,000 Ohio consumers signed petitions urging the continuation of developmental centers and the ICFMR option in Ohio and supported the decertification of the Martin class, NOT ONE consumer stepped forward to support OLRS’s position that elimination was desired, necessary or in the best interests of people with mental retardation and developmental disabilities.

And, while OLRS perpetuates policy to eliminate all congregate care settings in Ohio, the US Supreme Court has ruled  in Olmstead, that these settings should continue to be made available for individuals who choose  them and who can benefit from them.

In the Olmstead Case, it is important to note that OLMR, along with our national affiliate VOR, was an Amicus Curiae. We worked to protect the full continuum of options for people with mental retardation whether they needed a large facility or they needed supports for “community” care. It is also important to note that the while the Supreme Court upheld the position of consumers who continue to need and choose to live in developmental centers and ICF’sMR, OLRS continued to ignore the intent of the court ruling and work to force the closure of these residential settings.

During the Supreme Court battle in Olmstead, OLRS, who now claims to be assisting in guiding Ohio’s Olmstead Plan, was again silent in their defense of the thousands of Ohio citizens who needed their publicly funded advocates to support their right to continue to live in safe, appropriate facilities that they chose, and that met their needs. Again, instead of assisting mentally retarded consumers in protecting their homes and services, OLRS took the position that the consumer’s had made bad decisions about where and how they wanted to live. This position is not just arrogant and demeaning to consumers and their guardians; it is in direct opposition to the statutory role of a P&A system.

We believe that it is absolutely critical that publicly funded systems designed to protect consumers, act as the consumers themselves ask them to act. OLRS has acted as they wish to act, independent of public support for their position.

It is also important to note that during the sixteen year history of the Martin case, OLRS has failed to advocate and protect the rights of the named plaintiffs, whom they see as clients of OLRS. While thousands of Ohio citizens with mental retardation and developmental disabilities have used real, grass roots advocacy to secure community placements that did meet their needs, OLRS has allowed at least one of the named plaintiffs, to drift from one inappropriate placement to another. How can this be viewed as competent Protection and Advocacy.

It is significant that you understand that securing 31,000 signatures in support of the ICFMR program , and in favor of removing OLRS as class counsel in Martin, illustrates a major flaw in the day to day operation of OLRS.

It indicates that OLRS has acted often at opposition to the will and best interests of the group(s) they are established to protect. And it further indicates that OLRS is so institutionalized, so insulated from accountability for their actions, so completely out of touch with real consumers and real consumer input-that they can do as they wish even when those actions are in direct opposition to the wishes of the consumers.

Recommendations:
Ohio needs a strong protection and advocacy system. And Ohio consumers need a system that meets individual needs. Ohio also needs a system that is accountable to the consumers and taxpayers who support the system financially and believe that some groups need special protection from those who would neglect them, or exploit or abuse them. Currently, OLRS is not that system.

The state plan should include oversight hearings to review the policies and practices of OLRS. These hearings should be regional and should include individuals representing the 31,000 people whose names appeared on the petitions gathered this year, in support of saving a program OLRS sought to dismantle.

The hearings should also provide an opportunity for consumers to create the agency priorities. It would be difficult to believe that there is a single group of consumers larger than the 31,000 who signed petitions seeking to redirect public policy away from OLRS’s current directions. And, if the voices of these 31,000 consumers were not heard by OLRS in designing their current priorities, there is no reason to believe that OLRS will use the experience of these 31,000 individuals, in designing future priorities.

The oversight process should also include a look back at the effects of the OLRS inspired Mental Health Act in Ohio, and should seek to determine the health and welfare status of thousands of deinstitutionalized mental health and mental retardation citizens whose lives were altered by OLRS’s advocacy efforts which resulted in the dismantling of the MH and MR institutions and care in Ohio.

This look back should include an analysis of the admissions of former residents of mental health and mental retardation facilities, into homeless shelters, the criminal justice system, or into private psychiatric facilities. And real quality of life indicators should be used to evaluate the outcomes of OLRS’s desinsitutionalization  policy on the lives of these people.

Ohio’s P&A system must provide real advocacy to sustain those individuals who live in community based programs, where there are no on-site monitors for health and safety. There are mountains of anecdotal information indicating that abuse and neglect is prevalent in the community system. OLRS has been silent while hundreds of consumers living in the community have gone unserved, underserved or abused or neglected. OLRS has obviously not focused on these individuals as a priority, or on the systems that are supposed to support and prevent abuse and neglect. Simply having the downsizing and closure of institutions as a priority, does not imply real nuts and bolts advocacy necessary to sustain individuals with disabilities living safely in Ohio communities.

It is important to note also, that while OLRS is mandated to have a full commission and hold quarterly meetings, they did not comply with this for many years, until OLMR and several legislators forced this issue during a biennium budget hearing.Therefore  oversight should also include an  independent audit of  OLRS’s compliance with state and federal laws under which they are charged with operating the P&A system.

There should be a system for real accountability built into the practices of the P&A system, and it must not continue to operate with broad, overreaching powers that do not match the needs of real consumers.

There must be better access for consumers into all aspects of OLRS (or a new P&A Agency) activities. The OLRS web site does not provide addresses or contact information for commission members, nor does it offer specific times and locations of meetings, or methods for consumers to provide input during these meetings.

Consumers have repeatedly called OLRS, used the automated operator system, and gone weeks, or indefinitely without a call back from anyone. Again, consumer access to the P&A system in Ohio is either purposely restricted or made difficult; or it is neglected by the internal administrative and operating structure of OLRS.

It is absolutely essential that OLRS not be allowed to continue to conduct “business as usual”. While it will be an arduous task to create a more consumer responsive, legitimate P&A system in Ohio-is is absolutely essential that the task begins.

Conclusion:
OLMR believes that there are serious, long-standing consumer issues regarding OLRS’s ability to provide protection and advocacy in the best interests of consumers. And we are happy to assist in looking at methods to revitalize and reform the system to better serve Ohio’s citizens.

cc: OLRS Commission Members, President of Senate, Chief Justice, Senate & House Members, Ohio Congressional Delegation, OLMR Members 

[1] For the past sixteen years, families of individuals who chose to live in state-operated and private ICFs/MR, wrote to OLRS, asking that their loved ones be removed as part of the class. For sixteen years, OLRS told families that individuals could not be removed from the class. Legally, this is correct but from a public policy perspective, shouldn’t families and guardians be allowed a more active voice in litigation involving their family members with mental retardation?