The Advocare – 30th Anniversary Edition (Winter 2008)
A Publication of the West Virginia Advocates, Inc.
Clarice Hausch, Executive Director
Table of Contents
From the Executive Director
1977 seems like a very long time ago. In 1977 the New River Gorge Bridge, the worlds longest steel arch bridge, was completed in Fayetteville WV, Jimmy Carter became President, the first Apple computer went on sale, oil was pumped through the Trans Alaska Pipeline for the first time, the first MRI scanner was tested, and construction of the World Trade Center was completed. The population of the US reached 216 million, gas was 65 cents a gallon, the average US income was $15,000 and the average price for a new house was $49,300. Traumatic Brain Injury (TBI) was a poorly understood medical oddity and the term assistive technology did not exist. Individuals with severe disabilities lived with their families or in an institution and spent little time in the community doing the daily activities everyone else did like going to school, and working. Throughout the nation people with developmental disabilities and mental illness who could not live with their families received substandard custodial care in large antiquated institutions, usually in isolated locations, where neglect, abuse and unwarranted death were all too often familiar life experiences for them. The expectation was that once a person entered an institution they would remain there the rest of their life. Two years earlier, 1975, the first federal law was passed requiring that children with disabilities receive a free and appropriate public education. That same year the Developmental Disabilities Act reauthorization included funding for planning grants to create a Protection and Advocacy System in each state. In 1977 the first Protection and Advocacy System agencies, including West Virginia Advocates, came into existence.
Much has changed for the better in the lives of people with disabilities since then and West Virginia has been a leader in creating some of those changes. However there are still many challenges to be taken on, safeguards to be protected and funding and services that need to be developed in the months and years to come.
According to the 2000 US Census, in 1999 there were 1,662,290 individuals with a disability living in West Virginia, 24.4 percent of our population. This number does not include people living institutions. In the nation as a whole 18 percent of non-institutionalized Americans stated they had a disability (51.2 million people); 12 percent stated their disability was severe (32.5 million people). More than half of them between ages of 21 and 64 had a job and 25 percent between the ages of 24 and 64 had a college degree. However other findings were less encouraging. Individuals with a severe disability had an increased likelihood of having Medicare or Medicaid coverage, living below the poverty level, reporting their health status to be fair or poor, receiving public assistance and having a household income below $20,000. The poverty rate for people 25 to 64 with no disability was 8 percent, compared with 11 percent for those with a non-severe disability and 26 percent for people with a severe disability.
Individuals with disabilities are particularly impacted by health care costs and attempts by insurers and governments to contain and reduce these costs. A study done in 2005 by the Centers for Disease Control and Prevention found nationally the lifetime cost for an individual born in 2000 with mental retardation is expected to be $1,614,000 above the lifetime cost of a person born without mental retardation in 2000. For Cerebral Palsy it was $921,000, for hearing disability $417,000, and for a visual disability $566,000. This study estimated that nationally the lifetime cost for all people born in 2000 with mental retardation would be $51.2 billion dollars, Cerebral Palsy 11.5 billion, hearing loss 2.1 billion and visual impairment $2.5 billion. Nationally 1 in every 83 children is born with a disability. Twenty-nine to thirty five percent of the children born with an intellectual disability also have one or more other disabilities. In 1999 one out of every four West Virginians (of all ages) had a disability, the highest rate in the nation; fifty-four percent of the people in WV with disabilities have more than one disability. We have the second oldest population in the nation; the rate of disability increases with age. In West Virginia the disability rate for children aged 5-15 years is 6 percent, above age 65 it jumps to 42 percent.
These are staggering figures which are further compounded by the fact that many people who have disabilities live in poverty. The national total poverty rate in 1999 was 18.5 percent. The West Virginia Economic Justice Project, 2005 calculated the WV poverty rate to be 16.1 percent, 6th highest in the nation. 2000 census figures show the poverty rate in West Virginia spiking to 40 percent in some counties. Children are the most affected age group; one in four children in WV lives in poverty. Needless to say these issues are compounded in the lives of many people with disabilities.
Stigma, abuse, and neglect are still battles are fought daily by individuals with disabilities. Tremendous opportunity has opened up for some people to leave institutions and live in the community, but there are many who are still unable to do so, despite the 1999 US Supreme Court Olmstead decision. The Medicaid bias for funding institutional placements rather than community placements remains pervasive in West Virginia, despite an abundance of data indicating that community based services cost less are more beneficial than nursing home and other institutional services. On the bright side, in 2007 the Aged and Disabled Medicaid HCBS Waiver instituted a self directed option, a first for West Virginia. A similar option is scheduled for the MR/DD Waiver by 2010.
Individuals living in the community are faced by issues of inadequate accessibility and funding for housing, transportation and personal assistance. Access to equal employment, education, especially higher education and vocational training, and assistive technology and health care, including durable medical equipment, remains a challenge. Funding cuts at state and federal levels over the past five years as well as increasingly conservative courts that do not support the hard won legal rights of individuals with disabilities, makes it more difficult for individuals with disabilities to meet their basic needs and live quality lives in the communities of their choice.
I hope as you read this issue of the Advocare you will celebrate with us the victories and opportunities that have occurred for individuals with disabilities through national and state wide efforts in the past thirty years. As you think about these positive changes I hope you will also think about the unsolved issues; the social, and economic challenges of the future. The future requires renewal of a shared vision, and a willingness and commitment by all to accept the challenge to come together and become a true community that is empowered to fight for what is needed. Success will be difficult to achieve if we allow ourselves to be divided into disability silos competing against each other for funding with a my disability first, win-lose mentality that in the end is never enough to solve the challenges. We invite you to join us and hope you will invite us to join you in creating an exciting and rewarding future for people with disabilities in West Virginia in the years to come.
Clarice Hausch, Executive Director
Thirty Years, Where Have They Gone?
The author, Stuart May was WVAs first Executive Director and is the current President of the WVA Board of Directors. Mr. May has been a dedicated advocate for equal rights for persons with disabilities and has contributed ongoing volunteer support for West Virginia Advocates for over 30 years.
When asked to write an article about the beginnings of WVA for its thirtieth anniversary I was overcome with surprise and wonder. In 1977, Congress passed the DD Act mandating each state provide Protection and Advocacy services to people with developmental disabilities.
Under then Governor Jay Rockefeller, the State of West Virginia decided that advocacy for persons with developmental disabilities should be an independent agency rather than a State agency as seen in a number of other States. I was invited to become the first fulltime Executive Director of what was then called West Virginia Advocates for the Developmentally Disabled (WVADD).
The WVADD Board of Directors was made up of two representatives from each of the groups that represented persons with the developmental disability identified in the original legislation. Many of those original representatives are still working on behalf of persons with disabilities. Some have passed on and are remembered for what they have done. I must apologize that I dont remember all the names of those who were on that first board but would like to name those I do remember O. G. Britton, the President of the Board, Norman Roush, Ruth Sullivan, Linda Dickerson, Cordella Toles, Betty Harmon, and Jack Lipphardt. The original plan was written by Kathy Rhodes who acted as part-time Director until my move to West Virginia.
At the time of my employment there was no staff, no offices, no telephones or desks. We were loaned office space by George Bennett, Executive Director of the Developmental Disabilities Planning Council. My first task was to set up the agency. We were classified as a minimal allotment state and received $50,000.00 from the Federal Government and a small startup grant from the State. Within a couple of months we were up and running. The first staff were Kay Hilbert, John Marks, Susan Edwards, Genevieve Fairval, and Gail Falk, an attorney assigned to us by APPALRED with whom we contracted for legal services.
We soon recognized that alone, we would not be able to achieve all that was required of us. The major issues at the time were the implementation of the Federal Education of All Handicapped Children Act and the proper implementation of the State Special Education Act. The Board of Directors and staff decided to develop an outreach program to train parents as community educational advocates. A parent manual with developed and a series of training programs were presented. Trained and knowledgeable volunteer advocates were available to parents throughout the State. The program was so successful that the State Department of Education provided the agency with a grant to print and distribute the Parent Manual. We provided these advocates with limited legal administrative and economic support. The need for more legal support was recognized but the agency did not have the resources to meet this need.
Prior to the change in Federal law the agency developed a major educational presence at both the State and Federal Level. In conjunction with Nancy Capehart Lipphardt who was then the Executive Director of the ARC of Kanawha Putnam County, the agency spent a great deal of time at the legislature building coalitions with other groups and individuals to develop new legislation or make the older law more friendly to persons with disabilities. Different groups recognized the need to work together to bring about change. Unfortunately the ability of the agency to have fulltime representation at the legislature was severely restricted by Federal Law.
Over the last 30 years, West Virginia Advocates has had success for clients in many areas and been responsible for legal and administrative actions, including Hartley and Medley, have directly or economically improved the lives of at least one generation of persons with disabilities and their families. The agency can also count the passage of a bill that made it illegal to use zoning to keep persons with disabilities from living in small group housing, and was also responsible for getting persons with disabilities protected by the West Virginia Human Rights Commission. This success is due to the ongoing commitment of staff and those persons who have voluntarily served on the Board of Directors that have dedicated their lives to improving the lives of persons with disabilities.
As I look back to what was and what is today I find myself struggling with my views of society and the political system. Many of the issues that confronted people with disabilities thirty years ago are the same issues we are facing today. Many of the positive changes and accomplishments have brought about new issues that require our attention, including more sophisticated efforts to deny or limit the rights and services to our client community.
Some have also worked to turn us on ourselves so that we spend more time fighting each other then focusing on the many unmet needs facing West Virginians with disabilities. Unless the community looks together at what has been accomplished in the past, and support each other in the future, we are doomed to devour ourselves and accomplish nothing for those who continue to need our support and advocacy.
Since 1977, WV Advocates has continued the important mission to protect and advocate for the human and legal rights of persons with disabilities. Thirty years, and I have come full circle with WVA, from Executive Director in the beginning to President of the Board of Directors today. I still believe that every person has value and should be given the opportunity to share that value with the rest of society.
Stuart May, President, Board of Directors
WVA and West Virginia’s Disability Rights Movement
Since the 1970s, the passage of federal and state laws provided a framework for protecting and enhancing the civil rights of persons with disabilities, including the establishment of Protection and Advocacy systems.
Prior to those laws, many West Virginians with disabilities were isolated in private or public facilities or institutions. Families either kept children and adults with disabilities at home or sent them away to institutions, as appropriate services and supports were not available in their communities. Other than the professionals working in existing segregated institutions, there was little in the way of community based expertise, support or services to help individuals with disabilities and their families.
The majority of children who entered institutions in the 1960s and 1970s ended up growing up in those segregated environments, many lacking attention to individual human dignity and respect. In these segregated settings, individuals with disabilities were educationally, vocationally and socially deprived, and shut away from life in their community. Without community based services, families were forced to travel many miles and over time many gave up hope that family members would ever return home or have community based services available.
Over the last 30 years, West Virginia has been recognized as a national leader in advocacy for community supports and comprehensive services for people with disabilities. We believe that all people have the basic human right to choose where, how and with whom they want to live. WVA currently operates eight federal programs and a court ordered state contract, which serve the diverse needs of people with different disabilities.
On the following pages are important events in the Disability Rights Movement, and a * chronology of significant events in West Virginia during the 30 year history of West Virginia Advocates, Inc.
Passage of the Rehabilitation Act of 1973 marks the first big achievement of the disability rights movement. The act particularly Title V and Section 504 for the first time confronts discrimination against people with disabilities. Section 504 prohibits programs receiving federal funds from discriminating against otherwise qualified handicapped individuals. Litigation arising out of Section 504 will generate such central disability rights concepts as reasonable modification, reasonable accommodation, and undue burden, forming the framework for subsequent federal law, including the Americans with Disabilities Act of 1990.
U.S. Congress passes the Developmental Disabilities Assistance Bill of Rights (DD) Act. The DD Act provided federal funds to programs serving people with developmental disabilities and outlining a series of rights for those who are institutionalized.
The Education for All Handicapped Children Act (Public Law 94-142) is passed. This act established the right of children with disabilities to a public school education in an integrated environment. The act is a cornerstone of federal disability rights legislation. In the next two decades, millions of disabled children will be educated under its provisions, radically changing the lives of people in the disability community.
A U.S. Supreme Court decision (OConnor v. Donaldson) ruled that people cannot be institutionalized against their will in a psychiatric hospital unless they are determined to be a threat to themselves or to others.
Passage of an amendment to Higher Education Act of 1972 provides services to physically disabled students entering college.
*the Protection and Advocacy for Persons with Developmental Disabilities (PADD) program was established in WV. West Virginia Advocates, Inc. (WVA) is a private non-profit agency incorporated in 1977 as West Virginia Advocates for the Developmentally Disabled (WVADD) was designated by then Governor Jay Rockefeller as West Virginias arm of the federally mandated protection and advocacy system. The PADD program insured that individuals (adults and children) with developmental disabilities are afforded appropriate services in accordance with their individual needs.
*the Medley Class Action Suit was filed.
Title VII of the Rehabilitation Act Amendments of 1978 established the first federal funding for independent living and created the National Council of the Handicapped under the U.S. Department of Education.
The U.S. Supreme Court ruled that, under Section 504 of the Rehabilitation Act of 1973, programs receiving federal funds must make reasonable modifications to enable the participation of otherwise qualified disabled individuals. This decision is the Courts first ruling on Section 504, and established reasonable modification as an important principle in disability rights law.
Congress passed the Civil Rights of Institutionalized Persons Act, authorizing the U.S. Justice Department to file civil suits on behalf of residents of institutions whose rights are being violated.
*the Medley Consent Decree was signed, and began changing the conditions in all of West Virginias institutions, closing several. The Medley Decree mandated that assessments be made and that individualized services be delivered in the least restrictive environment. The Order meant that the WV Departments of Health and Human Resources, the WV Department of Education and the WV Division of Rehabilitation Services had to develop and coordinate specific community-based services for individuals with developmental disabilities who were school-aged and lived in institutions for more than 30 days.
*the Hartley Class Action Suit was filed.
*the Hartley plan was implemented. The Hartley program helped persons with developmental disabilities get services from behavioral health centers so they can live in their communities. The Hartley Plan ordered even more sweeping reforms of the behavioral health system.
*Governor Jay Rockefeller designated WVA to administer the Client Assistance Program (CAP). The CAP Program was formed to help individuals who have applied for or are getting services from the state Division of Rehabilitation Services, a Center for Independent Living, supported employment programs, and other programs funded under the federal Rehabilitation Act.
*Colin Anderson Centers Ward Building closed. Big Boys Ward (shown below)
*More Medley class members now in the community than in facilities.
The Protection and Advocacy for Mentally Ill Individuals Act is passed, setting up protection and advocacy agencies for people who are in-patients or residents of mental health facilities.
*WVADD was designated as the Protection and Advocacy for Individuals with Mental Illness (PAIMI). PAIMI was formed to help individuals with mental illness and to carry out abuse and neglect investigations on their behalf. WVADD contracted with the Mental Health Association to provide PAIMI program services.
The Rehabilitation Act Amendments of 1986 define supported employment as a legitimate rehabilitation outcome.
*WVADDs general membership approved a name change to: West Virginia Advocates, Inc.
The Technology-Related Assistance Act for Individuals with Disabilities (the Tech Act) is passed, authorizing federal funding to state projects designed to facilitate access to assistive technology.
The Fair Housing Amendments Act adds people with disabilities to those groups protected by federal fair housing legislation, and it establishes minimum standards of adaptability for newly constructed multiple-dwelling housing. FHAA prohibits discrimination towards people with disabilities in the sale or rental of housing and in the terms, conditions, services or facilities provided.
The Civil Rights Restoration Act of 1988, broadened the application of civil rights laws, including Section 504 and the Civil Rights Act of 1964, to recipients of federal funds.
*Court Ordered moratorium on building of 8-bed ICF/MR group homes for developmentally disabled adults in favor of small (1-3 bed) individualized residences. Supported by Governor Caperton and signed into legislation 1990.
*Last locked residential door unlocked at Colin Anderson Center.
*Spencer State Hospital closed , building torn down. WalMart and other retail businesses built on old hospital grounds.
Congress passes the ADA The Americans with Disabilities Act is signed by President George Bush on 26 July in a ceremony on the White House lawn witnessed by thousands of disability rights activists. The law is the most sweeping disability rights legislation in history, for the first time bringing full legal citizenship to Americans with disabilities.
The Education for All Handicapped Children Act is amended and renamed the Individuals with Disabilities; Education Act (IDEA).
*Implementation of WVDHHR policy requiring safeguards for persons with developmental disabilities during change of community residence.
*Last child left WV state institutions
*WVA was designated the Protection and Advocacy for Individual Rights (PAIR). The PAIR program was formed to assist individuals with disabilities who were not already eligible for other advocacy programs within WVA.
*WVA was also designated the Protection and Advocacy for Assistive Technology (PAAT) program. This program was formed to help individuals with disabilities obtain assistive technology devices and services.
*Greenbrier Center closed, current use; College
*Old Weston State Hospital closed
New William R. Sharpe, Jr. Hospital opened
Old Huntington State Hospital renamed Mildred Mitchell-Bateman Hospital
*Court ordered comprehensive plan for adequate residential settings and requirements for long term care with respect to persons with disabilities living in personal care homes, residential board and care homes and adult family care homes.
*WV Legislature passed a bill ordering the closure of Colin Anderson Center.
*Colin Anderson Center was closed. The Crib Ward (below), also known as the North/South Building, for lease. Present use: St. Marys Correctional Facility
*WVA implemented a Juvenile Advocacy Project for one year. This project was successful in providing information, technical assistance and advocacy services relative to children with behavioral health needs with a concentration on identifying or developing community supports in place of children sent out of state for services.
*Court order requiring Mount Olive Correctional Complex, Division of Corrections to normalize the treatment of inmates who have mental illness and to afford them rights created by State and Federal Law.
In Olmstead v. L.C, and E.W., the Supreme Court decided that individuals with disabilities must be offered services in the most integrated setting.
The Work Incentives Improvement Act (Ticket to Work) becomes law, allowing those who require health care benefits to work.
*Benjamin H. vs. Ohl (below.) The court found that Medicaid beneficiaries were waiting too long for home and community based services, and ordered WVDHHR to provide timely services to individuals with DD who were waiting for services.
The New Millenium
*WVA was designated as the Protection and Advocacy to Beneficiaries of Social Security (PABSS). This program provides assistance and advocacy to individuals with disabilities that receive Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) benefits and need assistance with breaking down barriers to employment.
*Court order providing sanctions to behavioral health providers when client complaints involving violation of the Interdisciplinary team process are not resolved in a timely and effective manner.
The Help America Vote Act was signed into law. The purpose of the act is to improve the administration of elections in the United States.
*WVA was designated as the Protection and Advocacy for persons with Traumatic Brain Injury (PATBI) This program was formed to work with individuals with TBI their families and other stakeholders to develop self advocacy skills and to ensure that needed services are available throughout the state.
*Behavioral Health Ombudsman position established via order under Hartley
*under the provisions of HAVA, WVA was designated to provide Protection and Advocacy for Voter Access (PAVA) to ensure the full participation in the electoral process for individuals with disabilities (right).
*as a result of a 2001 court order, WVA is awarded a state contract to provide advocacy services to the resident children of the Potomac Center in Romney, WV.
The Individuals with Disabilities; Education Act (IDEA) is reauthorized by Congress.
*WVA releases position paper supporting the closure of the WV-DRS and recommending appropriate services be provided in the community.
Over the Years We Have Moved:
The current staff of WVA (shown below) would like to recognize the talents and dedication of WVA staff throughout our 30 year history. While it would be difficult to identify individual staff or their specific contributions to WVAs success over the years, let their efforts be reflected in our ongoing commitment to protect and advocate for the human and legal rights of West Virginians with disabilities.
Current staff and friends of WVA for color photgraphs. Photographers unknown for black and white photographs. Susan Edwards for old Advocares.
29 Years and Counting…
The following article has been updated from one titled 18 years and counting, originally written and printed for the 1997, WVA 20th anniversary edition of the Advocare. The author, Susan Edwards, remains a dedicated advocate for equal rights for persons with disabilities and an employee of West Virginia Advocates for 29 years.
As the WVA employee with the most years of service, I was asked to write an article on how things have changed in the 29 years I have now been with the agency. Let me tell you; this is no little assignment, but Ill give it another whirl.
Twenty eight years ago we had approximately seven employees and contracted legal services. We were called West Virginia Advocates for the Developmentally Disabled (WVADD) or the Protection and Advocacy system for individuals with Developmental Disabilities (PADD). I was one of two Hotline Coordinators who took all the initial calls for individuals wanting assistance. We did the majority of the casework, the rest of which was handled under our legal contract. While specific issues have changed, one thing that remains the same: the majority of cases handled by the PADD program are special education cases.
Just prior to my employment, Macel Medley came to the attention of our agency, and the attorney started working on what has become known as the Medley class action suit. Various members of staff, the attorney, and the paralegal spent time in the hospitals reviewing case files. We met with people who lived in the existing state institutions, and developed the legal case. The case was brought to federal court, a consent decree was signed and the Medley Advocacy Project was born.
Over the years WVA has grown by leaps and bounds. We added the Client Assistance Project (CAP) and the Hartley Advocacy Program. With the addition of CAP, we were no longer an agency that served only individuals with developmental disabilities. CAP was mandated to serve anyone with a disability who has applied for or was receiving services under the Rehabilitation Act. Soon, we added the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program and changed our name to West Virginia Advocates, Inc. (WVA).
Next we added the Protection and Advocacy for Assistive Technology (PAAT) program and the Protection and Advocacy for Individual Rights (PAIR) program. With the addition of PAIR, all people are eligible for services if they have at least one functional limitation, and met our annual priorities and objectives.
Since I originally wrote this article, WVA has also added the Protection and Advocacy for Beneficiaries of Social Security (PABSS) program, the Protection and Advocacy for Traumatic Brain Injury (PATBI), Protection and Advocacy for Voting Access (PAVA), and a state contract for advocacy at the Potomac Center in Romney WV. The Medley and Hartley Advocacy Projects are now administered by another agency.
There have also been changes in the laws which have not only allowed us to increase advocacy programs and services for our clientele, but they also provided additional tools with which to advocate. When I first came to WVA, we had the Education of the Handicapped Children Act (now Individuals with Disabilities Education Act) and Section 504 of the Rehabilitation Act as amended. I remember the movement to add handicapped to the Human rights Act and the fight to ensure that Section 504 was amended by Congress. Now we have several more laws to help us in our advocacy efforts including; the Fair Housing Act, the Civil Rights of Institutionalized Persons Act and of course, the Americans with Disabilities Act (ADA)
Yes, WVA has changed over the years. We have gone from one program with seven employees to eight federal programs, one state contract and twenty-five employees. What hasnt changed is WVAs commitment to fight for the rights of individuals with disabilities. Our history has numerous examples of the ongoing fight to ensure the human and civil rights of individuals with disabilities. We have fought to close institutions, including most recently the WV-DRS rehabilitation center in Institute, WV, while advocating for appropriate services to allow people to live and grow in the community. We have fought to close segregated schools programs, and fought for inclusion in classrooms and in society. We have fought for job training and meaningful employment, opportunities in integrated settings, and we have fought for people with disabilities to have the right to make life choices in an inclusive society.
Yes, WVA has changed, weve all changed, and the change will continue, but with vigilance and commitment to our purpose these changes will bring us closer to our goal of equality for all.
Susan Edwards, Advocate
WVA Board of Directors
- President: Stuart May
- President-Elect, PAIMI Chair: Ted Johnson
- Treasurer: Myron Williams
- Secretary: Lolita Crews
- Member: Pamela Akers
- Member: Clifton Clark
- Member: Robert Hardesty
- Member: Terri Roberts
- Member: JoEllen Bursinger Zacks
This newsletter is available in alternate formats upon request.
THE ADVOCARE is published by the West Virginia Advocates. Publication of news items and articles does not imply endorsement by the Editor, the West Virginia Advocates, the Board of Directors or its individual members, or funding sources. Funding for this publication is provided by the U.S. Department of Education, Office of Special Education and Rehabilitative Services; U.S. Department of Health and Human Services, Public Health Services; U.S. Department of Health and Human Services, Administration on Developmental Disabilities, Social Security Administration, U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. Letters to the Editor and news items should be sent to: WVA, Litton Building, 4th Floor, 1207 Quarrier Street, Charleston, WV 25301.