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The Advocare – Winter 2002-2003


Contents

Message from the Executive Director

Public Input Requested on WVA’s Fiscal Year 2004 Priorities and Objectives

The West Virginia Advocates is developing its Priorities and Objectives for fiscal year 2004. In order to assure maximum public involvement, WVA is soliciting input from all West Virginians as to what priority issues WVA ought to address in our upcoming fiscal year.

Below, you will find a proposed list of priority issues for fiscal year 2004. Please select your top five issues for consideration by WVA. All you need to do is place an “X “ by your top five choices.

Upon completion and compilation, WVA will develop a more refined and specific set of Priorities and Objectives for additional public review and comment. Your assistance is greatly appreciated.

Proposed Issues for FY 2004 WVA Priorities and Objectives:

  • Housing
  • Transportation
  • Voter Access
  • Access to Mental Health Services
  • Access to Public Education
  • Abuse and Neglect Investigations
  • Self Advocacy Training
  • Protection & Enhancement of Medicaid Waiver Services
  • Protection from Isolation and Seclusion
  • Access to Health Care
  • Employment Protection Advocacy
  • Other, please Specify

Additional Comments:

Please Mail, Fax or Email your response to:

West Virginia Advocates
Attn: FY 2004 P & O’s Input
1207 Quarrier Street
Litton Bldg. 4th Floor
Charleston, WV 25301
FAX: (304) 346–0867
WVAinfo@wvadvocates.org

Community-based Care: The Only Rational Choice

By Robert Peck, Executive Director

Last June Governor Howard Dean of Vermont testified to the Senate Special Committee on Aging that “we need to treat nursing homes and other institutional care as the last option, after all other options have been tried and failed.” He was speaking on behalf of the National Governors’ Association.

Tommy Thompson, Secretary of the U. S. Department of Health and Human Services, wrote to our governor in August that, “We believe there is a tremendous opportunity to serve people…in their own homes or community residential settings without increasing costs.” The DHHR funds home and community-based waiver programs as well as nursing homes.

If a governor and spokesperson for the National Governors’ Association and the head of the DHHR can come out in support of communitybased care, (and these are not people without ‘real world’ knowledge and experience..a Democrat and a Republican, to boot), why can’t our state officials? Could it be that certain providers with very deep pockets influence the decisions of our policymakers? To the detriment of common fiscal sense and the well-being of the citizens of West Virginia?

The WV Department of Health and Human Resources has put a freeze on slots for the Aged and Disabled Waiver that allows Medicaid/nursing home eligible clients to use their Medicaid dollars to receive care in their communities. They say that they can’t increase the number of slots because:

  • They would have to increase their Medicaid budget to pay for more slots, but there is already a big deficit
  • They have to budget for nursing home beds because every Medicaid/nursing home eligible person is entitled to a nursing home bed; they can’t take the chance that beds won’t be available to people who need them
  • They have to follow the State Medicaid Plan which allocates where and how Medicaid monies are spent – as if it’s written in stone

HOWEVER:

  • A client using the A/D Waiver actually costs the state no more, and almost always LESS, than a client in a nursing home
  • The vacancy rate in nursing homes has been falling since 1996; there is currently an 11% vacancy rate, much more than enough to accommodate those Medicaid/ nursing home eligible clients who might choose a nursing home over the community in the future
  • The State Medicaid Plan is NOT written in stone and, as I understand, can be readily amended if the State so desires

Ideally, the availability of Aged and Disabled waiver slots should not even be an issue. The Federal government is already moving towards a ‘Money Follows the Person’ model in allocating Medicaid funds. That is, the money could be used for either community-based or nursing home care. The consumer makes the CHOICE. Texas, usually not considered one of our more progressive states, has already successfully adopted this model.

As Governor Dean said, “When it comes to long term care, we put the most expensive and least desirable service first… experience has shown that we can serve many more people with the same funding, and serve them in the setting they prefer, when we are able to keep them at home and avoid institutional costs…we can provide a higher quality of life by avoiding institutional services whenever possible.”

However, right now A/D waiver slots ARE the immediate issue. There is a long waiting list of people who have been approved for slots, but none are available. Those people either unhappily and unwillingly go into nursing homes or stay at home with inadequate care. Yes, there are some for whom a nursing home is a viable option, but others sit and vegetate, pining to be with home and family, hoping to be liberated.

The State Medicaid Plan is heavily weighted towards institutions. Its development is predicated on ‘institutional bias’ which is both historical and political. For a long time there were no choices; institutions were the only game in town. And who says lobbyists don’t determine public policy? But now there ARE choices; better and less expensive choices. And there are choices in how to make public policy. It IS possible for good sense, doing the right thing to prevail over monied interests.

The issue is very clear. Do we consign our aged and disabled citizens to a costly institution where they are often isolated and ignored? Or, do we give them a choice, at a lower cost to the state, of staying in their communities with their family and friends?

Help America Vote Act

Implementing the Help America Vote Act (HAVA) is a new area of activity for WVA. WVA has contacted the Secretary of State’s office (see letter below) to assure that WVA, as the State’s Protection and Advocacy System (P&A), is involved in planning the implementation of this vital legislation in West Virginia. As information is forthcoming we will report it to you.

Secretary Joe Manchin III  
State Capitol, Bldg. 1, Room 157-K  
1900 Kanawha Boulevard, East  
Charleston, WV 25305

28 January 2003

Dear Secretary Manchin:

I want to thank you for considering our request to participate on the 
Planning Committee for the implementation of the Help America Vote Act. 

Terry Pickett, community liaison for West Virginia Advocates, has sent 
material about WVA to Terri Helmick in your office. I hope that you and 
she have found the information helpful in clarifying both WVA’s mission 
in general and our role in relation to implementing the HAVA in 
particular. 

Our participation on the HAVA Planning Committee is essential to help 
ensure that this historical, groundbreaking Act is properly implemented. 
As the designated Protection and Advocacy system for West Virginia, we 
can provide the expertise and oversight to lessen the danger of pitfalls 
pertaining to accessibility and other rights of the disabled as they 
freely exercise their voting rights. 

Secretary Manchin, please feel free to call me if you have any questions 
or concerns that I can help you with. My number is 346-0847. Again, 
thank you for your consideration. I hope to be working with you in the 
future on this complex, worthwhile and exciting undertaking. 

Sincerely,  
Bob Peck  
Executive Director

NAPAS Program Management Conference

By Susan Given

I recently had an opportunity to attend the NAPAS Program Management Conference in San Diego, California. Information was provided on the Help America Vote Act, the new election reform law, which was recently enacted. This legislation, which attempts to overhaul the nation’s voting system, will provide funding to P & As to ensure that individuals with disabilities can fully participate in the electoral process. Procedures covered included registering to vote, casting a vote and accessing voting places. I was able to bring this information back to WVA so that we could immediately become involved in implementing this landmark legislation.

Throughout the rest of the conference, I attended the Information and Referral sessions. It was great to meet others from around the country and share our successes as well as our challenges. It was interesting to hear about the different models that each P & A uses in providing information and referral services.

There was a session discussing the Voluntary TASC/NAPAS Standards for the Provision of I & R and Short Term Assistance by P & As. WVA has incorporated these voluntary standards into our current policies and procedures for the Intake Department. I was happy to report that West Virginia Advocates sends satisfaction surveys to every person who receives assistance from our Intake Department. While this is costly and time consuming, it speaks to the commitment that WVA has in providing quality services to individuals who need our help.

Of great interest to me were the sessions on Special Education Law and Policy. The discussions centered on appropriate discipline for students with disabilities. Some schools in West Virginia are in such egregious violation of IDEA rules that WVA has made compliance in this area one of our priorities to work on this fiscal year.

All in all, the conference was great. It was nice to network with other P & A and NAPAS staff.

By Martha Barber

Susan Given and I left frigid West Virginia on the morning of January 7, 2003, and arrived in sunny, warm San Diego before darkness fell there. Mike O’Brien also attended but arrived in San Diego on a different flight.

On the first day, January 8, 2003, the conference was organized into four different “Institutes”, and I chose to attend the PABSS Orientation Institute, in part because I had attended a PABSS Benefits Planning, Assistance and Outreach (BPA & O) Training in October of 2002 and thought that the “Orientation for New PABSS Employees” would be a good supplement to the BPA & O training. Although the PABSS Orientation Institute was interesting and informative, I did not think it was geared towards new PABSS employees. The other Institute options for the first day were “P & A Orientation”, “I & R Committee: A Face to Face Meeting” and “Legal Directors’ Meeting”.

During the remaining days of the conference, NAPAS offered six different learning or information “tracks”, entitled respectively: “Strengthening Individual Skills”, “Organizational Capacity”, “Information and Referral”, “Employment: Preparing for, Getting and Keeping Jobs”, “Legal Management”, and “Litigation Skills”. There were presentations in the morning and afternoon on topics related to the track. The organization of the conference in this way made possible attending a topic of interest in another track. A number of these tracks were appealing to the Protection and Advocacy attorney. It was difficult to choose, but I settled on the Legal Management track, which included topics like “The New Federalism”, “Strategy Decisions Regarding Community Integration Litigation”, and “P & A Collaboration at the National Level”. I learned a lot and brought back some great resource materials. Come visit me and get copies. PS. San Diego was great too!

Behind the Scenes of Pogram Performance Reports

By Susan Given

When December rolls around every year, the holidays are not the only topic of conversation at WVA. Every year WVA submits annual Program Performance Reports (PPRs) to the funders of our six federal programs. This is an opportunity to “toot” our horn about the quality services WVA provides. Not only do we report numbers and demographics about the people we serve, but we also report success stories to show how WVA was successful in protecting the rights of individuals with disabilities.

WVA saw an increase in the number of individuals served in every program in FY ’02. Our two largest programs are Protection and Advocacy for Persons with Developmental Disabilities (PADD) and Protection and Advocacy for Individuals with Mental Illness (PAIMI). Some statistics for 2001 and 2002 are as follows:

PADD:
# of cases in 2001 – 182
# of cases in 2002 – 293
Info & Referrals in 2001 – 117
Info & Referrals in 2002 – 215

PAIMI:
# of cases in 2001 – 212
# of cases in 2002 – 231
Info & Referrals in 2001 – 102
Info & Referrals in 2002 – 203

Here is a PADD success story:

GT has autism. He was suspended from school for ‘head butting’ the principal. GT’s mother felt that this was GT’s way of expressing affection, or, at the very least, was not mean spirited. GT’s mother called WVA to ask for assistance. The Advocate was successful in getting GT back in school and requiring the teacher to do a functional behavioral assessment. GT’s school staff was trained in how to properly manage GT’s head butting behavior.

And here is a PAIMI success story:

A 16 year old PAIMI client, committed for 6 months to an inpatient treatment facility for youth, needed transition services from West Virginia Department of Rehabilitation Services (WVDRS). The facility told the Advocate that no WVDRS Counselor had ever entered their facility to process an application for Rehabilitation services. The Advocate contacted the WVDRS office serving that region and made arrangements for the counselor to go to the facility to make application with the student and his mother. The facility principal was enlightened, and he and his staff educated, as to the rights of their in-house students to access transition services from WVDRS. When the client was discharged from the facility, the Advocate verified a transfer was made by WVDRS to the office serving his home community. The incoming counselor had already been alerted to the client’s move and is now a member of his IEP team. The client is in the process of receiving vocational assessments and evaluations which will aid in his transition from high school.

These success stories and many more like them would not be possible without the knowledgeable and experienced staff at WVA.

“Shifting the Power” Training

By Terry Pickett

From February 10 – 13 a “Shifting the Power” training, a National Significance project from the University of North Carolina’s Center for Development and Learning, was held at the DRS complex in Institute. Sponsored by the WVU Center for Excellence in Disabilities (CED), the conference was designed to “empower people with disabilities by providing training and technical assistance to anyone interested in being a self-advocate and a leader in making their own choices and decisions”.

About 20 professionals, self-advocates, and their supports from around the state attended, including Regional Advocate Mike O’Brien and Community Education and Resource Development Specialist Terry Pickett from WVA. The training was divided into three sections: Leadership, Self-Advocacy and Self-Determination. A four-member team from North Carolina led the training with the able input and assistance of Helen Panzironi, outreach coordinator with the CED.

The primary goal of Shifting the Power trainings is to develop a cadre of self-advocates who will then teach others within the disability community, especially those who are not usually involved in advocacy, and their supports to become their own advocates. The training leaders used a mixture of videotapes, worksheets, role-playing, group activities and active discussion to model training techniques for the participants.

Understandably, many issues surfaced during training discussions. Two of the most troubling – and persistent – were the lack of communication among the many disability groups in West Virginia and the contentiousness that often occurs. For instance, how many people know that Mountain State Center for Independent Living, where Kevin Maynus works, has training modules on its website (http://www.mtstcil.org); or that Joan Arnold’s ARC website has various federal regulations dealing with disabilities written at the 10th great level (http://www.thearcmov.org/)? The various disability organizations throughout West Virginia have a rich array of information and resources…but far too few people know about them.

During the last session of the conference participants developed an action plan for setting up self-advocacy trainings throughout the state, possible venues being high schools, nursing homes and conferences. Already scheduled are sessions on self-advocacy at the Community Connections conference in April and the People First conference in September.

One thing that EVERYONE agreed on…we no longer have the luxury of pulling in different directions, working against each other. (We never really did.) With times as they are now, with money and resources in everdwindling supply, if we don’t want to go back to the ‘dark ages’ of inappropriate institutions, it’s more important than ever that we work together, that we help each other, that we act as one voice.

Upcoming Events

  • Community Connections Conference
    Canaan Valley
    April 25–27
    Contact: Roxanne Chaney
    Phone: (304)558–8997
    e-mail: roxannechaney@wvdhhr.org
  • People First Conference
    Canaan Valley
    September 3–5
    Contact: Wood County ARC
    Phone: (304)422–3151
    website: www.arcwd.org

Training with Reed Martin

Reed Martin, national expert on special education law, met with WVA legal staff and advocates for two all-day trainings on November 21, 2002, and January 22, 2003, to develop strategies to assist students with disabilities. Martin, who has a child who required special services through the Individuals with Disabilities Education Act (IDEA) and Section 504, has concentrated on special education rights for over 33 years. Besides litigating cases himself, Martin has been a consultant to other attorneys and parents throughout the United States in special education cases, has drafted legislation which has become law in Texas, where he practiced for 22 years, has filed amicus curiae (friend of the court) briefs at the Circuit Court and Supreme Court levels for disability organizations, has written widely about special education issues, and conducts workshops throughout the U.S. to teach parents, advocates and attorneys how to use “the most significant changes in special education law in 22 years” as well as “the dozens of amendments that can help parents get much better services for their children”. WVA is looking forward to future collaborations with Martin to strategize how to more effectively get services for students under the IDEA.

WVA Attorney Tim Murphy and Reed Martin discuss a fine legal point:

Reed Martin and WVA Regional Advocate Ed West have a friendly moment during training:

Funding

THE ADVOCARE is published quarterly 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. Funding for THE ADVOCARE 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. Letters to the Editor and news items should be sent to WVA, Litton Building, 4th Floor, 1207 Quarrier Street, Charleston, WV 25301 or WVAinfo@wvadvocates.org.

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The Advocare – 2002/2003 Winter (PDF)