In July 1995, Neighborhood Legal Services of Buffalo, New York was awarded a contract to establish a Technology Related Protection and Advocacy Program to provide services to all of New York State. We are now entering our fourth year as the New York Assistive Technology (AT) Advocacy Project and completing our third year of publishing IMPACT, a newsletter established to "get out the word" on funding of AT.

    This newsletter provides an update on our project. We will review what we set out to do, where we are now and where we plan to go as a project. We will also explain how you, our readers, can obtain services from the AT Advocacy Project. Finally, we invite you to use the "tear-off survey form" and let us know how you like our newsletter and what we can do to improve it.

    The AT Advocacy Project was established in 1995 to provide services, statewide, to persons with disabilities and the agencies, advocates and attorneys that serve them. Throughout our first three years we were staffed by a full-time paralegal, two part-time attorneys and a part-time secretary.

    Our challenge in 1995 was to use our very limited resources to establish a viable statewide project. We set out to do this by combining a very experienced advocacy staff and the latest technology available. We specifically targeted our services as follows:

• Direct advocacy: We would represent a limited number of individual clients on cases, including litigation, in which a funding source such as Medicaid had denied approval of funding for an AT device.

• Indirect advocacy: We would provide technical assistance to callers, statewide, who sought our expert opinions on AT funding issues involving a wide range of public and private funding sources.

• Clearinghouse for information: We would set up a resource library of materials, including selected hearing decisions, court-related papers and government regulations and make them available to callers, statewide.

• Referral list for free legal services: We would establish a list of attorneys/agencies in the public sector (e.g., Legal Services and Protection and Advocacy offices) and pro bono attorneys in the private sector where our clients could obtain free legal services on AT-related cases.

• Newsletter: We would design our newsletter as a curriculum on funding of AT, with a goal of developing a statewide readership.

• Maximum use of computer technology: We would implement the use of computer technology to deliver our services in the most efficient and cost-effective manner.

    During the past three years we have represented individuals of all ages, from infants who need specialized cribs to persons in their 80s who reside in nursing homes and seek funding for custom and power wheelchairs. During our first 18 months as a project, the great majority of our cases involved Medicaid denials and the most common item sought was a custom or power wheelchair. During the last 18 months, we have made great strides in establishing referral panels for Medicaid cases allowing us to do three things: focus on Medicaid cases that involve the need for litigation; focus on AT devices other than wheelchairs; and focus on funding sources other than Medicaid.

    During the past three years, we have filed nine Medicaid court appeals. Each has involved an Article 78 proceeding in state court to challenge an unfavorable fair hearing decision. To date, four cases have resulted in a court decision awarding funding for an AT device and two cases have resulted in settlements in which the Medicaid program agreed to fund the item in question. Three cases are still pending.

    From the beginning of our project, we attempted to direct our resources to helping individuals with disabilities obtain a variety of AT devices. We have also encouraged others to do likewise (see, e.g., June 1996 issue of IMPACT, "Assistive Technology: Not Just Wheelchairs"). Unless otherwise noted, the following are all AT devices that our staff or attorneys accepting referrals have won following an appeal:

• specialized buggies, car seats and head rests
• in-exsuffolator (coughing machine)
• computerized mattress to aid in skin integrity
• semi-electric hospital bed
• gait trainer
• wheelchair lift and stair glide
• Hoyer lift for outdoor pool (still pending)
• augmentative communication device
• ultra lightweight wheelchair, with one-armed drive
• feeding machine (self feeder)
• Uppertone exercise unit

    We won several Medicaid hearings for custom or power wheelchairs where the denial was based on the fact that the individual resided in a nursing home. We also won a case in which the hearing decision directed Medicaid to pay for repairs to a power wheelchair.

    Additionally, we have represented individuals in cases involving a wide range of funding sources other than Medicaid: Medicare, private insurance, the special education system, the foster care system and the Supplemental Security Income (SSI) program’s Plan for Achieving Self Support (PASS). We have provided extensive technical assistance to callers on other AT funding sources, including the Office of Vocational and Educational Services to Individuals with Disabilities (VESID), the Commission for the Blind and Visually Handicapped, the Americans with Disabilities Act, section 504 of the federal Rehabilitation Act, the Physically Handicapped Children’s Program, and use of Social Security/SSI work incentive provisions (e.g., impairment related work expenses, blind work expenses) as tools for funding AT.

    Significant resources are devoted to providing technical assistance to "callers" from locations all over the state. Although most of this continues to be by telephone, we get some requests by letter or fax and, more recently, are getting some requests for assistance via the Internet at our e-mail address (nls@sprynet.com). The calls range from a request for simple information lasting only a few minutes to a discussion with one of our volunteer attorneys lasting 45 minutes or longer. Quite often, the contacts made by fax or e-mail are requests for specific documents, such as hearing decisions or court decisions, that we have referenced in one of our newsletters. During the past year we have responded to 20 to 40 callers each month.

    In our introductory newsletter we commented that "presently few advocates handle AT cases because many advocates lack the expertise to do so." In addition to addressing this lack of knowledge through our newsletter, which we describe below, we set out to become a clearinghouse for information on the many sources of funding for AT.

    Prior to 1995, Neighborhood Legal Services had developed significant expertise on the many funding sources for AT and had collected materials to support our own advocacy efforts. Since starting the State AT Advocacy Project our staff has dedicated hundreds of hours to solidifying and updating this expertise and organizing and expanding our library resources so that we can make them available to those who call upon us for technical assistance.

    We now have nearly 100 Medicaid fair hearing decisions in our computer database. Our library provides us with quick access to state and federal laws, regulations and policies involving all the major AT funding sources. Many of these resources are accessible through our computer network. For example, our staff has access to CD rom resources regarding Medicaid, Medicare, SSI and the Americans with Disabilities Act.

    Our staff also has access, in-house, to the resource library of the National AT Advocacy Project that is a separate special project of Neighborhood Legal Services. That project’s resources include a library of more than 300 hearing decisions and a library of more than 270 court-related documents from 70 separate court cases involving AT issues. The National AT Advocacy Project has collected these materials from nearly every state in the country.

    During the past three years, nearly 100 percent of the cases referred out have been Medicaid hearings. We have successfully referred cases to Legal Services programs, Protection and Advocacy Programs, a Medicare advocacy program and several law school clinics. We have also been very successful in referring cases to a growing number of pro bono attorneys. These referrals have gone to attorneys in Buffalo, New York City and in many points in between. All clients who are referred are served without charge.

    During the first two years of our project, we devoted considerable resources to recruitment of volunteer (i.e., pro bono) attorneys. We enlisted the help of the state and local bar associations and local pro bono projects to do this. We are now seeing significant results from these efforts.

    During a recent nine-month period, the AT Advocacy Project successfully referred 17cases to private attorneys and law firms. Five separate firms took individual cases and one firm took the remaining 12 cases. A very modest estimate is that our clients will receive more than $20,000 of free legal services through these 17 referrals and the value of those free legal services could be much higher.

    Our growing network of Protection and Advocacy, Legal Services and pro bono attorneys allows us to dramatically increase the number of clients we are able to serve, without charge, on AT-related matters. All public and private sector attorneys who work with our clients are provided a packet of resource materials and are encouraged to call us for extensive technical assistance as they work on a case. A future issue of IMPACT will describe our pro bono referral project in more detail.

    In October 1995, we began publishing IMPACT with a statewide mailing list of 600. The mailing list has since grown to more than 1,000, with most of the additional 400 added at the request of the person, firm or agency. A growing number of persons are "on-line readers," checking out our latest newsletter and back issues on our web page (described below).

    IMPACT was designed as curriculum on AT funding issues and a cumulative reference book to be kept in a three-ringed binder. Each issue is three-hole punched and we would be happy to send you back issues if you are missing some. (Call Diane Dustin at 716-847-0655 ext. 218 if you need back issues.) IMPACT is now published six times per year.

    Each issue contains a feature article and the majority of the feature articles address a specific funding source for AT. For example, past issues of IMPACT have covered: Medicaid (a three-part series); the special education system; VESID and the Commission for the Blind; the Veteran’s Administration; SSI’s Plan for Achieving Self Support; Medicare; private insurance (a two-part series); the Physically Handicapped Children’s Program; New York’s Early Intervention Program; and private charities. One of our more popular recent issues included a feature article, "Report Writing: Justifying the Need for AT." In addition to the feature articles, we regularly report on important AT-related hearing decisions and court decisions. We also report on legislative and regulatory changes to major AT-related funding sources.

    We hope that you enjoy reading IMPACT and invite you to fill out the "tear-off survey form" to let us know what you think of the newsletter and how it can be improved.

    Medicaid continues to be the most frequent issue that we and a majority of our callers encounter. To enable us to address Medicaid issues most efficiently, we have established electronic (i.e., computer file) versions of both the state Medicaid regulations and nearly 100 AT-related fair hearing decisions. We use a scanner to put the full-text hearing decisions into our system. Both the regulations and our fair hearing database are available to users of our web page.

    Consider this example. Jack Jackson calls us from an agency in New York City. He was reading the March-April 1998 issue of IMPACT and read the summary of the Corey S. case, a hearing decision approving Medicaid funding for a power wheelchair with a tilt-in-space system. He asks if we will send him a copy of the decision. We get Jack’s fax number and hang up. We go into our fair hearing data base and do a word search for Corey S. and within seconds have the full-text decision on our screen. Then, using our electronic fax program, we fax the decision to Jack. Our staff member has never left his or her chair, and Jack did not have to wait a few days for the mail.

    The same example could end with us attaching the Corey S. decision to an e-mail which is sent to Jack. If Jack sought a document that is on our web page (such as Medicaid’s 1997 policy governing funding for air conditioners), he could download it to his computer without the need to call us. If he was on our web page and reading the March-April 1998 issue of the newsletter after business hours, at 6:00 p.m., 6:00 a.m. or in between, he could use the feedback form on our web page to request the Corey S. decision and we could send it to him by fax or e-mail the next day.

    For the attorney who is handling a Medicaid appeal in court, we have a select number of court-related documents (briefs and pleadings) saved as computer files. Those can be e-mailed or sent on disk as part of our technical assistance. We also have the capacity to do high quality, computer-assisted legal research to support the work of our staff and our panel of public and private sector attorneys. We regularly use the following research tools: Law Desk, the CCH Medicare & Medicaid Guide and Social Security Plus (all on CD rom); Westlaw; and the growing number of resources on the Internet.

    Originally, when we first developed our plans for the AT Advocacy Project in 1995, we projected using an electronic bulletin board to allow callers to access information about funding of AT. As we became operational, it quickly became clear that the electronic bulletin board was being replaced by the web page as the best technological tool to make information available to those persons, agencies and firms we are mandated to serve.

    Our web page initially went on-line in November 1996 and we began keeping statistics on visitors and sites visited in February 1997. The State AT Advocacy Project has a separate sub-page on the Neighborhood Legal Services web page and many documents or "sites" within that sub-page. The amount of activity generated by our project’s web page and sites has escalated significantly in the less than two years it has been in place. For example, in July 1997 the project’s web page had 45 separate visitors who visited 133 AT-related sites. In May 1998 those numbers were up to 253 and 1349.

    Visitors to our web page have access to many of the resources created by our project. All of our IMPACT newsletters are on the web page and the latest issue is always available one week to 10 days before it goes out in the mail. The New York Medicaid regulations and our fair hearing decision database are also available from our web page. (The visitor will need to download the database and software to access this information, but would not have printcapacity.) Many other features are available to the web page visitor, such as a listing of VESID offices and announcements about AT-related policy, such as Medicaid’s policy for approving funding for air conditioners.

    The visitor to the Neighborhood Legal Services web page also has access to many other resources which may or may not be related to AT. For example, our National AT Advocacy Project has a separate sub-page which includes a database containing abstracts of hearing decisions from the national AT Resource Library. A separate sub-page is set up for Social Security and SSI work incentives containing many resources on SSI’s Plan for Achieving Self Support (PASS), including important 1997 PASS policy changes. A sub-page is also set up on vocational rehabilitation which includes up-to-date training materials done by the National AT Advocacy Project and the full-text policy issued by the federal Rehabilitation ServicesAdministration in 1997 regarding the maximization of employability for individuals seeking vocational rehabilitation services. We also have sub-pages developed by the other specialty units of Neighborhood Legal Services (Housing, Family Law and Public Benefits). The Public Benefits page contains many Medicaid-related resources.

    A very valuable resource which was developed by the National AT Advocacy Project for the web page is a set of "Legal Research Links." This sub-page contains direct links to many other valuable web pages, including links to sources of federal laws, federal regulations and the Federal Register. Many individuals have told us that they regularly use the links page as a platform for Internet-related legal research.

    The New York AT Advocacy Project receives its funding through the Technology Related Assistance for Individuals with Disabilities Act of 1988. Better known as the Tech Act, the 1994 amendments to this act created the funding which pays for our operations.

    Unless Congress acts to authorize continued funding for programs like ours, the funding for the AT Advocacy Project will end on July 31, 2000. In fact, the last year of funding under the current legislation, beginning August 1, 1999, would be at roughly 50 percent of our current budget. While we remain cautiously optimistic that Congress will continue funding for us under the Tech Act, we will explore other sources of funding to fill in the gap should the current source of funding end.

    Assuming some reasonable level of continued funding, we intend to continue the core services which we previously described: direct advocacy, indirect advocacy, the information clearinghouse, the attorney referral panels, and the newsletter. We would also continue use of computer technology and look for new ways to use technology to maximize our use of minimal resources.

    During the first three years of our existence, we have seen a gradual shifting in allocation of resources. Our staff is handling fewer individual cases and spending much more time providing technical assistance. The number of technical assistance calls has gone up and the amount of time spent with each caller has also gone up, particularly as more calls come from the attorneys who are accepting our referrals. We are also devoting more time to maintaining our computer-related resources, including our web page.

    Although our staff paralegal and attorney caseloads will continue to go down, we hope to always maintain small individual caseloads to allow us to stay on top of the AT issues affecting New Yorkers with disabilities.

    If we assume that our staff will not significantly grow beyond its present levels [see box, page 135], the only way to ensure free legal services to more individuals on AT cases is through the efforts of volunteer private attorneys. Both the Protection and Advocacy and Legal Services programs have finite resources and can only be expected to pick up a small percentage of the potential cases. The private bar, however, is a resource that we have still not fully explored.

    During the next year, we will seek to identify additional attorneys and law firms in those areas of the state where we have no volunteers on our pro bono panel. To do this, we will continue to establish working relationships with the local bar associations and local/regional pro bono projects for those areas of the state. We are optimistic that these efforts will lead to even greater resources to work on these very important AT cases.

    The New York AT Advocacy Project started out in 1995 with a very ambitious mandate. We were to provide advocacy services to New Yorkers with disabilities, statewide, who needed AT. This was to be done with total staffing that never exceeded two full-time equivalent staff members. Based on the limited resources provided for this project, we believe we have done a good job so far and hope to identify ways to improve our efforts in the future.

    We hope that this article provides readers with a better understanding of what services we may be able to provide to you and the persons you serve. If you have any questions about the AT Advocacy Project, feel free to call Marge Gustas at 716-847-0655 ext. 264.

    Assistive technology helps people with disabilities make use of their abilities. An AT device is any item or piece of equipment used to maintain or improve a person’s functional capabilities. AT services include evaluations to determine the need for AT and training on how to use a device.

    Do you have decisions of interest relating to assistive technology in the following areas? Medicaid, Medicare, Vocational Rehab, VA, Special Education, Physically Handicapped Children’s Program, Private Insurance, etc.

    Other advocates can benefit from your experience. If you have fair hearing decisions or are involved in or have completed litigation in these areas, we want to know about it.

Our Staff Members

Jim Sheldon, Supervising Attorney
Marge Gustas, Staff Paralegal & Coordinator of Pro Bono Project
Bill Mastroleo, Staff Attorney & Web Master
Lorne Marshall, Staff Paralegal
Diane Dustin, Project Secretary

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