Tapping Technology, June, 1993 Inside: Funding Workshops page 2 Answers to Funding Questions page 3 Funding Strategies Conference page 3 Funding Challenge Answered page 4 Funding Assistive Technology: A Labor of Love Funding for assistive technology sometimes falls right into place. More often, though, itžs an arduous process requiring tenacity and dedication from the individual using the technology or a dedicated advocate. The latter scenario describes Nicole DiSeta and her advocate and mother Lousia DiSeta. Were it not for her mother, Nicole DiSeta would probably not be in a special education speech and language class in Baltimore City. She is the youngest of the children ranging in age from 7 to 9. She is the smallest, the least expressive, the child who needs the most attention, but shežs there! In a city where a 1991 average of $4,200 per student is spent, Nicoležs Individual Educational Program cost $11,414. Of course, the city school system didnžt come to the DiSetas and bestow these wonderful gifts on their child. Louisa DiSetas, Nicoležs mother, started fighting the day her child was born and hasnžt stopped fighting since. Nicole became her second full time job. Charlie DiSeta, Nicoležs father, tells a favorite story. Four years ago when his union, the Teamsters, would not pay for a Touch-Talker , an augmentative communication device to help Nicole talk, Mrs. DiSeta vowed she wouldnžt give up. She persisted with appeals and finally the executive committee of the local Teamsters invited her to make her case at a board meeting. These men, says her husband, couldnžt refuse her. žLouisa made them see Nicole as one of their children.ž Three weeks later, the Teamsters sent a check for $1,600. The DiSetažs insurance company paid $400 and United Cerebral Palsy paid the remaining $800. When Nicole was not yet 3 - and still crawling - Mrs. DiSeta went to Baltimore city schools to plan for her childžs education. The laws had been changing and as one of Nicoležs speech therapists at school says. žMrs. DiSeta knows the law better than the lawyers.ž At first, Nicole was placed in the Paul Laurence Dunbar Preschool in East Baltimore. žNicole didnžt belong there,ž says her mother, who took her out of the program after three days. žHow could they put her in there with kids playing ring around the rosy while Nicole could hardly sit up by herself?ž Mrs. DiSeta complained. And complained. žThey were just trying to get rid of me, by putting my child there. They thought they heard the last of me.ž she says bitterly. žBut they didnžt know who they were dealing with.ž Mrs. DiSeta kept looking for the right program for her child. She spoke to her councilman who wrote on her behalf to the School Superintendent. Finally, the city offered a private program that the DiSetas wanted: The Delrey School in Catonsville run by United Cerebral Palsy. The cost of tuition, $8,500 per year, was shared by the city and state. But Mrs. DiSeta - who was slowly learning how to maneuver through the system - saw her battles as just beginning. žI realized then.ž she says, žthat they werenžt going to give me anything unless I fought for it.ž The Delrey preschool keeps children up to the age of 5 or 6, when they are either placed in public schools or sent to other private facilities. When Nicole was 4 Mrs. DiSeta began worrying about Nicoležs next placement. Which turned out to be the best move because the assessment team gave the DiSetažs what they wanted: a city school program tailored to Nicole, an experiment in placing a non-verbal child, who at the age of 6 could speak only 13 words and needed a TouchTalker, right into a special education program housed in a regular elementary school. "Children do get more because their parents push harder", concedes Evelyn McIntosh, the liaison who works for both the parents and the schools. Itžs difficult to say whether Nicole would have gotten what she did without her mother. I would like to hope that there would have been the same decision. You know thatžs what we strive forž. And the future for Nicole? žI have to keep fighting for my child.ž Mrs. DiSeta says wearily, her eyes ready to fill with tears. žShe canžt speak, I have to speak for her. Ižm only doing what any parent would dož. Page 2 Funding Workshops: Where to go and how to get funding for assistive technology Funding II - EPSDT vs. Medicaid If you have a child with a disability or work with children with disabilities you need to attend this workshop. EPSDT has been referred to as the žGold Cardž of Medicaid and can be the vehicle to fund an array of assistive technology. This workshop will give you hands-on strategies to access this valuable source of funding. Monday, June 7, 1993 1:00 p.m. - 4:00 p.m Potomac Center, Hagerstown Thursday, July 8, 1993 1:00 p.m. - 4:00 p.m. Eastern Shore Hospital Center, Crownsville Monday, August 30, 1993 1:00 p.m. - 4:00 p.m. Prince Georgežs County Funding III - Preparing a Funding Justification: JUST DO IT! This hands-on workshop will address the process of preparing and submitting a successful proposal for funding of assistive technology devices and services. This is a žmust attendž workshop if you are serious about funding assistive technology. Thursday, September 23, 1993 10:00 a.m. - 12:00 noon Maryland Rehabilitation Center, Baltimore EPSDT: an underused funding source for individuals up to age 21, EPSDT can fund: Call 1-800-TECH-TAP today to register for EPSDT vs. Medicaid Other Upcoming Training Highlights Planning Adaptable and Accessible Housing: Using Universal Design Concepts. Original date of May 26, 1993 has been POSTPONED. New date will be in July or August. Call 1-800-TECH TAP after June 1, 1993 for exact date and time. SA V - Terminology for Interpreters May session changed to Saturday, June 5, 1993 9:00 a.m. - 2:00 p.m., Eastern Shore Hospital Center, Cambridge. CET IV - Computer Based Solutions Locations have been finalized: June 22 - Hagerstown, July 20 - Cumberland; August 17 - Salisbury; September 21 - Baltimore. Call 1-800-TECH TAP for more information. TOOLS FOR LIVING trainings are exciting, accessible, open to the public assistive technology workshops. The majority of the training sessions are available for Continuing Rehabilitation Credit for DORS employees. Check your MD TAP Spring-Summer, 1993 Training Calendar for upcoming training sessions which are of interest to you. If you have not received a Training Calendar, please call 1-800-TECH TAP for a complimentary copy. The Calendar is available in print, Braille, and on diskette. Page 3 MD TAP Resource Answers Funding Questions: RESNA TA staff Answers Funding Questions Experience across the country has shown that although a federal/state program MAY pay for assistive technology devices or services, it also MAY NOT... If you are having difficulty negotiating funding for Assistive Technology, then you should know how to respond to the following situations: The school officials say they just donžt have the money.... The school officials say therežs no place for Assistive Technology on the IEP.... What if the therapist confides to me that school officials wonžt permit inclusion of AT needs in the evaluation report? The school wonžt let students take equipment home.... Our local principal agreed to provide technology, but the school board said žnož.... The school says I must first try to get private insurance or Medicaid to pay for the equipment before they will consider it.... Who should pay for technology, training or other services included on a 16-year-old studentžs Transition Plan? My vocational rehabilitation counselor said there is no money left in his/her case services allocation for the year. VR is making me run around and get a denial from every other potential source of funding before considering providing the technology I need.... When I finished school, I went to work in a sheltered workshop. Ižd like to get a žreal jobž, but Ižve been told Ižm žtoo severely disabledž.... Where can I get help negotiating žthe systemž to get the technology and services I need? Where can I get details of federal policies related to assistive technology? If you are able to answer each statement with appropriate policy please give us a call. Wežd like to know of your experience. If some of them leave you hanging, or if they describe situations you or someone you know are in, please call MD TAP at 1-800-TECH-TAP and request MD TAP TECHknowledge Resource Guide # TK15, Funding Resources. RESNA TA is a federally funded technical assistance grant to provide help to consumers and "tech act" staff. Funding Strategies Conference On June 5, funding experts from around the country descend on the WISP Resort in Western Maryland for a full day, MD TAP sponsored conference. Focusing on hands-on strategies for obtaining funding for assistive technology, the conference participants are equipped to seek funding on their own. Conference presenters and topics include: Steve Mendelsohn, nationally known author and speaker, on Tax Strategies & Options, Ron Sibert, Delaware Assistive Technology Initiative, on Funding Streams for Individuals Birth - 21 years, and Michael Dalto, Service Coordination Services, on Work Incentives and Strategies for Working Adults. If you were unable to attend this dynamic conference, excerpted participant packages have been bundled with other timely funding information and are available to you by calling 1-800-TECH-TAP and asking for: MD TAP TECHknowledge Resource Guide # TK15, Funding Resources. Page 4 We Goofed!! First prize for proof-reading goes to Ernie Laveau, a Rehab Engineer with DORS. He spotted our mistake in the March 1993 issue of Tapping Technology. We referenced the Maryland Building Code for the Handicapped (ANSI A117.1-1980). That code is outdated and should read: ANSI A117.1, 1992 Standard for Accessible & Useable Building Facilities. Thanks for keeping us honest, Ernie. From the Editor: This issue of Tapping Technology features the experience of Nicole DiSeta and her family related to funding assistive technology. We'd also like to hear from you. The upcoming topics for Tapping Technology are: September, 1993 - Education December, 1993 - Independent Living / Older Adults March, 1994 - Transportation / Personal Mobility June, 1994 - Underserved Consumers / International A.T. We'd like to consider your insight and experience on these topics and assistive technology for publication in Tapping Technology. Please submit your ideas or articles at least eight weeks prior to publication to: Rick Metheny, Editor, Tapping Technology, MD TAP 1380 Marshall Street, Hagerstown, MD 21740 MD TAP Funding Challenge Answered The Beach Chair Challenge that MD TAP issued (see Tapping Technology December 1992) has been met by four community organizations and two resort hotels. As a result of that challenge, MD TAP helped support the purchase of 8 chairs, of which 7 will be used at various locations and resorts in Ocean City and at Assateague State Park. Two hotels / resorts, the Carousel Hotel and Castle in the Sand, have purchased chairs for their guests. The additional five chairs were purchased by service organizations to be used at public use beaches in Ocean City. Service organizations purchasing Beach Chairs include: Ocean City Lion's and Lioness Clubs, Quota International of Ocean City and the Order of Elks, Ocean City Lodge No. 2645. The City of Ocean City's ADA Committee has met with the Beach Vendors Association to establish locations and guidelines for remaining chairs. The locations are:  the Ocean City Inlet  25th Street  30th Street  89th Street  130th Street All of these street locations are marked with the Universal access symbol as an accessible route to the beach and boardwalk from Coastal Highway. The city is planning to build shelters to store the chairs at these locations and the nearest beach vendor has agreed to accept supervision of the chair and shelter. To access the chair located at Assateague State Park, individuals should contact the Department of Natural Resources at the Park. Page 5 Capitol Notes Health Reform Moves On The White House invites consumers and providers of health care to comment on health care reform. Send written comments to the Health Care Task Force: The White House, 1600 Pennsylvania Avenue, NW, Washington, CD 20500. Increased A.T. Funding The Clinton administration proposes increased funding for only one rehabilitation program. Technology Assistance would increase $3.6 million to $37.7 million. This program funds MD TAP as well as programs in other "Tech Act" states. Page 6 Marylandžs TAP Team Technology Assistance Program Executive Director: Mary Brady Assistant Director: Pat Ourand Administrative Coordinator: Maureen Holder Office for Individuals with Disabilities Box 10, One Market Center 300 W. Lexington Street Baltimore, Maryland 21201 Technology Demonstration Center 1-800-TECH-TAP Director: Bud Rizer Information Specialist: Jim Corey Sensory Aid Specialist: Sheri Gelvar Funding Specialist: Pat Ourand Administrative Specialist: Dave Poehlman Secretary: Hope Sanders Technical Support: Teresa McCoy Regional Technology Specialists Western Maryland: Rick Metheny The Brandenburg Center, Cumberland 301-777-2373 (Monday) The Potomac Center, Hagerstown 301-791-4626 (M - F) 1-800-99-WMTAP Eastern Shore: Janet Parke The Holly Center, Salisbury 410-546-2181 ext 273 Our September, 1993 issue will focus on Education. If you have specific areas you'd like to see addressed, write Tapping Technology, Box 10 One Market Center 300 W. Lexington Street, Baltimore, MD 21201 or call 1-800-TECH-TAP Tapping Technology is available in large print, on disk, in braille and on audiotape. Call 1-800-TECH-TAP to request an alternate format. Tapping Technology is a publication of the Maryland Technology Assistance Program. MD TAP is a federally funded project of the National Institute for Disability and Rehabilitation Research (NIDRR), Grant No. H224A90019-91. MD TAP is governed under the provisions of Public Law 100-407 (1988), and is provided as a cooperative service of the Governor's Office for Individuals with Disabilities, William Donald Schaefer, Governor. MD TAP provides information on available products, devices, services and other resources to assist individuals with disabilities. No endorsements of these products, devices, services or resources are intended