AT ADVOCATE
Newsletter of the National Assistive Technology Advocacy Project
A Project of Neighborhood Legal Services, Inc.
295 Main Street, Ste. 495 · Buffalo, New York 14203 · (716) 847-0650
(716) 847-0227 FAX · (716) 847-1322 TDD · e-mail: atproject@nls.org · Web Page: http://www.nls.org
Supported by the National Institute on Disability and Rehabilitation Research,
U.S. Department of Education, Through a Subcontract with United Cerebral Palsy Associations.

Volume IV     Issue 1                                           December/January 1999
Copyright 1999, Neighborhood Legal Services, Inc.

INTRODUCTION

    In May 1996, Neighborhood Legal Services, Inc. of Buffalo, New York received a subcontract from the national United Cerebral Palsy Associations (UCPA) to establish the National Assistive Technology (AT) Advocacy Project. Our mission was to provide a wide array of support services to allow AT advocates from Protection and Advocacy (P&A) programs to better serve individuals with disabilities.

    Our goal was to provide technical assistance; collect and disseminate a variety of documents, including court decisions, briefs, other court-related documents, and administrative hearing decisions related to AT funding; prepare written materials about the legal criteria governing various AT funding sources; and train P&A for Assistive Technology (PAAT) advocates. We also sought to stimulate communication and collaboration within the PAAT network. Our goal was to foster the notion that AT advocates are part of a larger national effort to effectuate lasting change in the ability of persons with disabilities to obtain AT to enhance their lives. Although the primary target for our services would be the PAATs, we sought to make our services available to other P&A advocates, Client Assistance Programs (CAPs), Legal Services and Legal Aid programs, private attorneys, state Tech Act Projects and any other disability advocacy agencies.

    We recognize that turnover is a fact of life within the P&As, their PAAT projects and the other agencies that get our newsletter. Many of you started doing AT work after we issued our introductory newsletter in July 1996 which described the Project in detail. To bring less experienced AT advocates and any of our newer readers "up to speed," this article will provide an update on services available through the National AT Advocacy Project. We will explain the core services that continue, some new initiatives and how we continually strive to use the latest technology to provide efficient and cost effective services. We will also explain how you can help make us a better asset to all AT advocates.

    Technical assistance (TA) is at the heart of our work. TA, which is generally provided by telephone, is also provided by electronic mail (e-mail), fax or regular mail.

    TA requests, during the past year, involved the following direct or indirect AT funding sources: Medicaid, special education, vocational rehabilitation, the Supplemental Security Income (SSI) program’s Plan for Achieving Self Support (PASS), Medicare, private insurance, the Americans with Disabilities Act, section 504 of the Rehabilitation Act, SSI income and resource rules (including the work incentive provisions), Social Security work incentive rules, the Fair Housing Act, and state lemon laws. Callers also asked about federal constitutional law, federal practice and when to choose state rather than federal court. Questions or requests typically fit into the following categories: funding criteria, advocacy strategies, requests for hearing decisions, briefs or pleadings, requests for research assistance, requests to review documents prepared by the caller (including briefs and newsletter articles) and requests for training materials. We have also provided advice on how to use the Internet as a research tool.

    During a 13-month period ending September 30, 1998, we responded to TA requests from PAATs in 44 states, Washington D.C., Puerto Rico, the Virgin Islands and American Somoa. Other noteworthy requests came from: State Tech Act Projects in 13 states, Legal Services or Legal Aid offices in 11 states, 13 private individuals, several state vocational rehabilitation agencies, several Client Assistance Programs, several Centers for Independent Living, several private attorneys, an attorney from the U.S. Department of Justice, the U.S. Department of Health and Human Services, two law schools and a university. We also responded to requests from nationally-based organizations, including: the National Association of Protection and Advocacy Systems (NAPAS), the Medicare Advocacy Project, and the National Senior Citizens Law Center. Where appropriate, we encourage callers from outside the P&A network to contact their state PAAT for assistance.

    Each month we respond to several TA requests via e-mail. We also make frequent use of electronic fax, allowing us to fax documents from our individual computers. Based on current trends, we expect an increased use of e-mail to communicate with those seeking TA. (See box, p. 143, for a listing of staff e-mail addresses.)

    AT Advocate is sent to all P&A offices, Tech Act Projects, Client Assistance Programs, NAPAS, the primary office of each Legal Services or Legal Aid program, and any law firm or advocacy agency that wants to be added to the mailing list. Currently, our mailing list stands at nearly 700. All newsletters are also posted on our web page.

    The newsletter serves three primary purposes. First, it is designed as a curriculum on AT advocacy. Most issues contain a feature article dedicated to an AT funding source and the legal criteria which governs it. For example, the April-May 1997 issue contained an article on funding of AT through Medicaid.

    A second purpose is to highlight developments in law, regulations, agency policy, case law or administrative decisions. For example, following the reauthorization of the Individuals with Disabilities Education Act (IDEA), our August-September 1997 issue contained a feature article on the amended IDEA. When the Social Security Administration issued a November 1997 policy directive governing SSI’s PASS, we summarized the policy in our December 1997-January 1998 issue. A regular feature is AT Court Watch, in which we report new court decisions or pending cases. For example, the DeSario case, involving Connecticut’s use of an exclusive list for Medicaid funding of durable medical equipment, was covered extensively in the newsletter during the past year.

    A third purpose is to communicate on a range of AT-related issues. We will tell readers about a new service offered by us, such as the research links available on our web page. We announce upcoming events, such as the March 1999 conference in Austin, Texas (see newsletter insert). We also mention concerns from the field, such as that of Taymour Ravindi of California, who is looking for other advocates who have worked on cases seeking Medicaid funding for a vehicle lift. (Mary Jo Butler, PAAT attorney from Idaho, currently has such a case pending in state court and is making her brief available for our AT Resource Library.)

    AT Advocate is issued six times per year and we will soon publish an updated table of contents. Many readers have complimented us on the newsletter and many of you have copied articles for distribution. (If you need back issues of the newsletter, call Diane Dustin at 716-847-0655 ext. 218.)

    The newsletter limits us to five or six pages for feature articles. In an effort to cover selected topics more expansively, we have written some two-part newsletter articles like the one on using the Internet for legal research, published in 1997 and 1998. We have also written two longer articles that were published in Clearinghouse Review, including one on funding of AT through Medicaid, special education programs and state vocational rehabilitation agencies (April-May 1997); the other on SSI’s PASS (Feb.-March 1997)(co-authored by Edwin Lopez-Soto of the Greater Upstate Law Project in Rochester, New York).

We plan two more articles for publication in Clearinghouse Review during 1999: Funding of AT through Medicare should be published during the summer; SSI and the Family Law Practitioner: Creative Settlement of Alimony and Child Support Cases to Fund Specialized Services and Equipment for Persons with Disabilities (to be co-authored by Diana Straube, a family law attorney at Neighborhood Legal Services) should be published in the fall. We will also collaborate with UCPA on a small booklet on Medicare funding of augmentative communication devices and a monograph, "Funding of AT for Children with Disabilities Through Special Education Programs: The Cutting Edge."

    Good handouts are essential to a successful training session or conference. They cover the topic in more detail than is possible during a 75 or 90 minute presentation and provide a lasting resource. Our handouts are often prepared for the specific session, such as the handout on vocational rehabilitation prepared for the "Bridges to Better Advocacy" conference. We also reproduce our newsletters for use as handouts.

    We often get requests to use our materials in other training events. For example, when the Rehabilitation Engineering Society of North America (RESNA) sponsored a three-day conference on private insurance last summer in Portland, Oregon, they obtained permission to reproduce our two-part newsletter sequence on funding of AT through private insurance policies.

    In late 1996, Neighborhood Legal Services established a web page. Within it is a sub-page or separate page for the National AT Advocacy Project, which contains a wealth of information on funding of AT. The Project’s web page contains: every issue of AT Advocate; the articles written for Clearinghouse Review; selected briefs from AT-related cases, including briefs from the Fred C. case out of Texas; highlights on AT-related law, regulation, policy changes and case law; training announcements; and other issues of interest. We have also created a "Research Links" page, providing links to some of the best sources of legal research for disability advocates. During the last six months of 1998, "hits" to our AT-related sites averaged 2,000 to 3,000 per month, with that number continuing to grow. Many advocates use our web page regularly and use our "links" site as a platform for their Internet-based legal research.

    Between January and September 1998, Project staff did training at 10 separate conferences or programs across the country. In addition to our one-day and two-day programs at our national "Bridges to Better Advocacy" conference in Austin, Texas last March, we also provided training at the following conferences:

• the NAPAS conference in Washington, D.C.

• the NAPAS CAP/P&A training in Portland, Oregon

• a statewide AT conference in Kansas

• a statewide AT conference in West Virginia

• a national conference for state Tech Act Projects in Arlington, Virginia

• a three-state conference on Social Security and SSI work incentives in Chicago, Illinois

• the Dallas, Texas Rehabilitation Association conference

• a NAPAS-sponsored nationwide teleconference on Medicaid funding of AT in nursing homes

    Project attorneys, Jim Sheldon and Ron Hager, presented 32 separate training sessions at these events, covering a wide range of topics and reaching more than 940 persons. Project attorney, Bill Mastroleo, who is also our web master, joined Jim and Ron as a co-presenter for three of the sessions at the Austin conference.

    In addition to a traditional federal library, we also subscribe to several disability-specific reporters, including the CCH Medicare-Medicaid Guide, the Individuals with Disabilities Education Law Report, the National Disability Law Reporter, and the Federal Requirements Handbook. We also have several resources available in a CD rom format, including: Law Desk, which contains the U.S. Code, Federal Regulations and disability-related cases and treatises; the CCH Medicare-Medicaid Guide; and a treatise known as Social Security Plus. We also subscribe to Westlaw, a computer-assisted research service. Finally, we regularly access Internet web pages to supplement our in-house library.

    Since we are housed in a larger Legal Services/P&A office, we have access to many other valuable resources. For example, our Housing Unit has extensive resources on the federal Fair Housing Act and federally subsidized housing programs. We have used these resources to respond to TA requests regarding the right to landlord-funded AT under the Fair Housing Act.

    We have nearly 750 separate documents in our Resource Library which have been gathered from PAAT  projects and others, nationwide. The administrative documents include hearing decisions, supporting briefs and policy directives. The court documents include pleadings, briefs and unreported decisions.

    The administrative documents are organized for easy retrieval through our AT Resource Digest. This system was designed and implemented during 1996. An abstracting form categorizes and summarizes documents based on a menu of key words. The completed abstracts, generally one typed page, are entered into a database using FolioViews software. The final database or digest offers a word-searchable method to quickly identify, in abstract form, resources that may be useful to AT Advocates. Presently, there are more than 400 documents in the database. We regularly use the database as a quick method to provide TA to callers.

    We have also made our digest available to all PAATs by sending them the appropriate disks. The disks, available in a Windows or DOS format, contain the FolioViews viewer and the database, allowing outside users the same word searchable capacity for locating abstracts. Because of software licensing restrictions, however, outside users cannot print the abstracts. Each abstract contains an identification number (e.g., "NLS 001") which allows  outside users to request documents from us by number. We regularly get calls from PAAT advocates requesting documents they have identified through a digest search. An updated version of the digest will soon be sent out to the PAATs and will replace the version currently on our web page.

    The court-related documents are organized into a system for easy retrieval. All court cases on which we have documents are given a number and a folder is created for that number. Documents for that case are then assigned letters. So, for example, if we have three documents on a particular case (e.g., a complaint, a brief and a decision), those documents would be assigned the letters A, B and C and the specific case with a listing of the acquired documents will appear on an alphabetical Case Docket. In addition to the Case Docket, we also created two other reference indexes: one lists the court cases according to the funding source involved, the other lists the court cases by the type of AT device involved. The alphabetical Case Docket and the indexes were introduced to PAATs during our Bridges to Better Advocacy conference in Austin last March. An updated Case Docket and indexes will be available soon.

    Shortly after our Project was established, a six-member AT Attorney Advisory Board was formed. Our current board includes the following P&A attorneys: Julie Lippman, Florida; Monica Murphy, Wisconsin; Ed Myers, Arizona; Taymour Ravindi, California; Steve Elliot, Minnesota; and Maureen O'Connell, Texas. Steve Mendelsohn of national UCPA is an ex-officio member. The group was selected to ensure regional diversity and to ensure some perspective from largely rural populations. The board includes three persons with disabilities who are users of AT.

    The board meets monthly to assist us in planning activities and developing systems for best serving the PAATs and other AT advocates. For example, last year the board worked closely with Project staff to plan the three-day conference held in Austin, Texas. It also provided guidance to the Project in planning sessions to be delivered at the NAPAS conference. The board was also a driving force in the formation of the two work groups summarized below.

    This group consists of attorneys and advocates from more than 20 states and has met regularly since November 1996. Last year, it met five times by teleconference. Meetings serve as a forum to discuss pending hearings and litigation, state and federal policy and related issues. Although the primary focus of discussion centers around Medicaid, participants often report on or seek input on cases involving other funding sources. Meetings often lead to communication and exchange of information among participants between meetings.

    This originally started as a spin-off of the Medicaid work group. Initially, the sole focus was on overcoming the barrier to funding of augmentative communication devices through Medicare. More recently, the group agreed that we will deal with Medicare funding of AT, in general, with a focus on funding of augmentative communication devices. This group also meets five times per year and is made up of most of the same members who attend the Medicaid work group meetings. Like the Medicaid group, these meetings are a great opportunity for persons to learn what their colleagues from other states are doing. This is particularly important for Medicare as many advocates are only now working on their first Medicare cases. Anyone wishing more information on the Medicaid or Medicare work groups should contact Jim Sheldon at the AT Advocacy Project.

    The strength of our Project and its resources depends, to a large degree, on the support we receive from attorneys and advocates who are in the trenches — settling cases, winning hearings and challenging state policies in the courts. Please send us your hearing decisions, court decisions and briefs. If you have put together training materials on a topic, send that to us as well. We will add your materials to our resource libraries and make them available to others. We may also give your name as a key contact person to discuss the issues involved in your case.

    Please also consider participating in our work groups. Most participants do not make every meeting, but it is a way to keep up with what others are doing. The strength of these work group meetings does not come from the AT Advocacy Project; it comes from the contributions of advocates from all parts of the country.

    We hope you will also consider attending our national conference in Austin, Texas in March (see insert). If not, we hope you can make it to the NAPAS conference in June and attend any AT-related sessions there. Most of our training sessions are designed to be interactive, allowing trainees to gain information from both the trainer and their colleagues in the audience.

    The National AT Advocacy Project provides a wide array of support services to AT advocates, nationwide. Although many of our readers may be aware of what we have to offer, we hope that this article has offered a better picture of our Project for those of you who are somewhat new to AT advocacy or new as readers of AT Advocate.

    In the near future, advocates who work with the PAATs will be asked to respond to a periodic customer satisfaction survey. We hope you will take advantage of that opportunity to candidly let us know what you like about our Project and how we can improve. Of course, you need not wait for a formal invitation to give us that input.

    Many of you know that the Tech Act, which is the source of funding for the PAATs and our Project, was recently reauthorized. We had hoped to provide a brief summary in this newsletter of what that means in terms of funding for the next couple of years. However, since the funding picture is still not totally clear, we will plan to provide an update at our Austin conference.

    We have reported several times on Fred C. v. Texas Health and Human Services Commission, a challenge to the Texas Medicaid policy in which augmentative communication devices (ACDs) were approved for children but not for adults over age 21. Following a favorable decision in the District Court, the Fifth Circuit Court of Appeals remanded and the District Court again ruled in favor of the plaintiff. The state appealed again.

    In the second appeal, the state attempted to reargue Texas Medicaid’s obligation to provide ACDs to persons over age 21 as either durable medical equipment or as a prosthetic device. (The Fifth Circuit seemed to improperly lump both categories of coverage as only available to individuals eligible for home health services, while in fact the prosthetic device category stands by itself. See 42 C.F.R. § 440.120(c).) The court, in affirming the District Court’s second decision in an unreported per curiam opinion, held that under the "law of the case" doctrine reconsideration of the issues presented in the first appeal is barred. Unpublished Opinion (12/23/98).The Fifth Circuit then held that because the state did not contest plaintiff’s eligibility for home health services, the lower court properly granted summary judgment for Fred C.

Medicare Part B premium: $45.50 per month
Other Medicare information available on
Medicare web page: www.medicare.gov

THE NATIONAL AT ADVOCACY PROJECT
OUR STAFF MEMBERS, EXPERTISE

Jim Sheldon, Supervising Attorney, 716-847-0655 ext. 262, jsheldon@nls.org, primary expertise in Medicaid, Medicare, Social Security/SSI rules, SSI’s Plan for Achieving Self Support (PASS), private insurance

Ron Hager, Staff Attorney, ext. 225, rhager@nls.org, primary expertise in special education, vocational rehabilitation, ADA/section 504, transition issues, Social Security/SSI rules, SSI’s PASS

Bill Mastroleo, Staff Attorney, Web Master, ext. 243, bmastroleo@nls.org, primary expertise in vocational rehabilitation, private insurance

Trish Weber, Staff Paralegal, ext. 267, tweber@nls.org, to be called for specific document requests, conference information

Diane Dustin, Secretary, ext. 218, to be called for specific document requests

[Note: Jim, Ron and Bill each have significant expertise in AT-related areas other than those listed as primary. Both Jim and Ron spend 50 to 60 percent of their time on the Project, while Bill, Trish and Diane work at much lower percentages. Since Jim, Ron, Bill and Trish now have individual e-mail addresses, we will begin to phase out use of the nls01@sprynet.com address.]

    We have designed a word-searchable digest, using computer technology, to store and retrieve hearing decisions and other administrative documents. We also have indexed more than 250 documents from more than 70 pending and decided court cases. All documents are available through our AT Resource Library. Please send us your hearing decisions, briefs and other documents involving AT.

Please send information to:                      TEL: (716) 847-0650
Attn.: Diane Dustin                                       FAX: (716) 847-0227
Neighborhood Legal Services, Inc.              TDD: (716) 847-1322
Ellicott Square Building                                Web Page: http://www.nls.org
295 Main Street, Rm 495                              e-mail: atproject@nls.org
Buffalo, NY 14203