Niecie’s NewsNiecie’s NewsThe Newsletter of Speaking For Ourselves Niecie’s News • Spring 2008 SFO BOARD OF From the Desk of the Executive Director... I hope this newsletter finds everyone doing well and preparing for spring. While we are still in our temporary office, we are moving forward with our organization’s activities. We have created several new trainings including an important module on voting. With a presidential election this year, this information is even more important! Our chapters are growing as you will see by the section on Chapter Highlights. We are providing trainings across the state and have a large group of trainers who have been receiving refresher train the trainer sessions throughout the winter months. The youth initiative has started to address the needs of students with disabilities approaching transition out of school. We are also adding family caregivers to our outreach efforts. Our board has completed a PATH for the direction SFO will take in the coming years. Stay tuned for more news in the coming months. I hope you enjoy this issue of “Niecie’s News” being published, for the first time, with the skillful assistance of Sue Scott Dolan, whom many readers know through PA Parents & Caregivers Resource Network. ~ Debra Robinson ~ We thank the following former board members for their service: Marjorie Bungard, Oscar Drummond, Karen Hayes, Esther Kuhn, Carolyn Morgan, Ramona Klink. We welcome back Jodi Saitsky to our staff. Speaking For Ourselves is an independent, grassroots, self- advocacy organization run by and for people with developmental disabilities. DIRECTORS Lynette Savoy President Rick Giovannucci Vice President Thalia Dafermos Secretary Frank Yurick New Treasurer Scott Federbusch Brian Habermehl -New Robert Hanas -New Elizabeth Malley Mike Rhine Cindy Roach James White -New Richard Young -New STAFF and CONSULTANTS Debra Robinson Executive Director Sharon Ferry Deputy Director Barbara Bernecker Office Coordinator Jodi Saitsky Membership Carolyn Vidt Western Office Ruth Landsman Consultant Oni McMullen Consultant Sue Scott Dolan Newsletter Consultant Niecie’s News, the Newsletter of Speaking For Ourselves, is made possible by funding from the PA Developmental Disabilities Council and the Bucks, Chester, Montgomery and Philadelphia County MH/MR Departments. Speaking For Ourselves thanks them for their support of this project. 100 West Main Street, Suite 510 • Lansdale, PA 19446 • 800-867-3330 • FAX 215-361-3101 • www.speaking.org Please feel free to share this newsletter with self advocates or colleagues. 2 Niecie’s News • Spring 2008 CHAPTER UPDATES — SFO Western Region News — Mon Valley Chapter Meets regularly and acquiring some new members. Robert Hanas has been selected for the SFO Board. Rick Giovannucci, Chapter President and Board Vice President is very active at the Charleroi office of Tri County Patriots for Independent Living. This chapter does not have an advisor. Pittsburgh Chapter Meets on the 2nd Sunday of the month. Chapter held its officer elections in January. Liz Malley is President, Anita Baker is Vice President, Larry Kubey is Secretary, and Pam Smelt is Treasurer. On March 9th the chapter partnered with Allegheny Co. DHS, Community College of Allegheny Co. and PA Connecting Communities to put on a Health Awareness Day. Topics presented included How to be a Better Patient Advocate, Breast Cancer and Prostate Cancer Awareness, and How Best to Access Good Health Care. Scott Federbusch, chapter member, engaged his audience to tell him about their experiences with health care providers and how they advocated for themselves. Audience members offered advice to others on how they could be more self determinedwhenitcametohealthcare.Inbetweenalltheevents,chaptermembers manned an information table giving out SFO material and talking with folks about our organization. In July, Allegheny Co. DHS will begin meeting with chapter members to plan an October event about Relationships. This chapter does not have an advisor. Blair County Chapter This chapter is still working through the changes brought on by the death of a long time member and chapter advisor. Elections were held in January. The results are: Don Angermeier, President; Beth Goetz, Vice President; Leah Leiden, Secretary; Siobhan Freeman, Treasurer. Members are exploring ways to raise money, in addition to monthly chapter dues, to support chapter activities and to provide refreshments. Rick Giovannucci and Carolyn Vidt, SFO Western Manager, are providing support in between and during meetings. This chapter does not have an advisor. Allegheny County Last year, SFO was asked by Independence Middle School eighth grade students to come and talk with them about students with intellectual 100 West Main Street, Suite 510 • Lansdale, PA 19446 • 800-867-3330 • FAX 215-361-3101 • www.speaking.org Please feel free to share this newsletter with self advocates or colleagues. Niecie’s News • Spring 2008 3 CHAPTER UPDATES disabilities. Carolyn V. wanted one of our members to come to the school with her, but because of work and transportation, none of our members were able to be there with her. The students seemed really interested and asked a lot of questions. Students sent a very large Thank You card, signed by most all of the students. This year, SFO was asked to come back. Again, none of our members were able to get off work or had no transportation. So, once again, Carolyn V. will be speaking with the 8th grade classes. In the next report, I will report to you how the day went. Armstrong Chapter Speaking For Ourselves has arrived in Armstrong County. Carolyn V. has been busy introducing folks to SFO. In February, two people agreed to train to be trainers of a Political Empowerment event. After one canceled date due to heavy snow, the event came off without a hitch. Folks who participated seemed to be interested in learning more about how they can be more politically powerful and expressed a desire to do some voter workshops in the early Fall, just before election day. The Mechling-Shakely Center for veterans who have post traumatic stress disorder are interested in having SFO come and talk with vets about ways they can be more active in their communities. People in this and surrounding rural counties never heard of Speaking For Ourselves. It is a very large area to travel through and people don’t live very close to one another. It is difficult for folks to find transportation to get to a place where they can meet other folks who have self advocacy, in common. Western Chapter News by: Carolyn D. Vidt, Western News — SFO Eastern Region News — Philadelphia We have moved to a larger space at 123 S. Broad Street hosted by Philadelphia Coordinated Health Care (PCHC). We had outgrown our old meeting space and PCHC was kind enough to offer their space and support by providing a short short presentation at each meeting concerning an area of healthcare. The April meeting will include info on Dental Care, an issue critical to many of our members. To check future health topics, please call our main office at 215-361-3100. Chester County The Chester County Chapter has been focused on raising funds to reprint Roland Johnson’s book, “Lost in a Dessert World”. The first 100 copies have been printed 100 West Main Street, Suite 510 • Lansdale, PA 19446 • 800-867-3330 • FAX 215-361-3101 • www.speaking.org Please feel free to share this newsletter with self advocates or colleagues. 4 Niecie’s News • Spring 2008 CHAPTER UPDATES and many were sold to be used as a text for a course in Developmental Disabilities and Self Advocacy at the University of Delaware. Their next fundraising effort will be to hold a dance! See the contact and location information below. Please join them if you can! Chester County Chapter Dance St. Basils’ Church 2330 Kimberton Road, Kimberton, PA Saturday April 26th 7-9 PM. Ages 18 and up $5.00 requested donation For more info or advance tickets call Jim Colbert: 484-986-4405 jcolbert@camphillsoltane.org If you would be interested in starting an SFO Chapter in your area or serving as an advisor for a new or existing chapter please call Debbie at 215-361-3100. Stay In The Loop Between Newsletters We have started an e-mail list to help keep self-advocates and family members informed of news and changes that may affect YOU! If you would like to join, please send an e-mail to Ruth@speaking.org and you will be signed on and welcomed to “SelfAdvocacyShareandLearn” within 48 hours. We are embarrassed - In our Fall 2007 newsletter, we included incorrect information in memory of Donna Luther, long time SFO advisor in Blair County who passed away last summer. The tribute should have read: Donna Luther was survived by her husband, Ken Luther and her daughter, Siobhan Freeman. 100 West Main Street, Suite 510 • Lansdale, PA 19446 • 800-867-3330 • FAX 215-361-3101 • www.speaking.org Please feel free to share this newsletter with self advocates or colleagues. Niecie’s News • Spring 2008 5 SAVE THE DATE! Speaking For Ourselves 2008 Annual Conference Saturday, June 21, 2008 Inn at Chester Springs Exton, PA (In Chester County) Request a Registration Form! Call Speaking’s Office at 1-800-867-3330! Do You Need to Stay Overnight? Call Speaking for More Information. Visit www.speaking.org for Updates Self-Advocacy - Fun! - Open Microphone - Friends! - Songs Agenda 8:30 am ........ Registration 9:00 am - 10:00 am ........ Continental Breakfast and Opening Session 10:30 am - 11:30 am ........ Morning Workshops 12:00 pm - 2:00 pm ........ Lunch, Music and Awards 2:30 pm - 3:30 pm ........ Afternoon Workshops 4:00 pm - 6:00 pm Delicious Munchies, Dancing and Open Mike Self-Advocacy - Fun! - Open Microphone - Friends! - Songs Markyourcalendar 100 West Main Street, Suite 510 • Lansdale, PA 19446 • 800-867-3330 • FAX 215-361-3101 • www.speaking.org Please feel free to share this newsletter with self advocates or colleagues. 6 Niecie’s News • Spring 2008 SUPPORTS INTENSITy SCALE (SIS®) What you Need to Know The SIS is the required assessment chosen by Office of Developmental Programs (ODP) for all waiver recipients. What Types of Questions will I be Asked on the SIS®? The SIS® asks questions in six different areas of the person’s life. Examples in each of those areas are below: • Home Living asks questions about supports the person needs in areas such as laundering clothes, tidying his or her home, and preparing meals. • Community Living asks questions about supports the person needs in areas such as participating in leisure activities, visiting friends and family, or shopping and running errands. • Lifelong Learning asks questions about supports a person would need in areas such as learning and applying skills like reading signs or solving problems. It also asks about supports needed to fully participate in traditional adult learning settings. • Employment asks questions about supports a person would need to be successful in competitive employment. • Health and Safety asks questions about the supports a person would need to avoid health and safety hazards, use emergency services, and maintain physical and mental health. • Social Activities asks questions about the supports a person would need to successfully socialize with others in a variety of settings. THE FREQUENCY OF SUPPORTS NEEDED ~ how often the person would need support to do the activity successfully. THE DAILY SUPPORT TIME THAT SHOULD BE PROVIDED TO DO THE TASK SUCCESSFULLY ~ the time needed to provide these supports across a TYPICAL day (24-hour period) when the support is provided. THE TYPE OF SUPPORT THAT WOULD HELP THE INDIVIDUAL ACCOMPLISH THE TASK LIKE A TYPICALLY FUNCTIONING ADULT ~ what kind of extraordinary support would be needed to help him or her be successful? **The reason that the SIS® asks about every item is that the philosophy of the tool is that every person with an intellectual or developmental disability has a right to have their support needs measured for every type of activity. The SIS® is not asking about preferences, it is asking about support needs. The ISP is the process where the individual’s preferences will be identified. Source: SIS Fact Sheets 100 West Main Street, Suite 510 • Lansdale, PA 19446 • 800-867-3330 • FAX 215-361-3101 • www.speaking.org Please feel free to share this newsletter with self advocates or colleagues. Niecie’s News • Spring 2008 7 FAMILy CAREGIVER CORNER Do you need information for supporting your son or daughter to become a self-advocate? SFO’s Principles of Self-Determination can really help! Check out the SFO website: www.speaking.org Or call: 1-800-867-3330 The Principles Freedom: The exercise of the same rights as all citizens. People with disabilities, with assistance when necessary, will establish where they want to live, with whom they want to live and how their time will be occupied. They do not have to trade their inalienable rights guaranteed under the Constitution for supports or services. Authority: The control of whatever sums of money are needed for one’s own support, including the re-prioritizing of these dollars when necessary. This is accomplished through the development of an individual budget that “moves” with the person. Support: The organization of these resources as determined by the person with a disability. This means that individuals do not receive “supervision” and “staffing”. Rather, folks with disabilities may seek companionship for support and contract for any number of discrete tasks for which they need assistance. Responsibility: The wise use of public dollars. Dollars are now being used as an investment in a person’s life and not handled as resources to purchase services or slots. Responsibility included the ordinary obligations of American citizens and allows individuals to contribute to their communities in meaningful ways. Note: PPCRN is grateful to SFO for the opportunity to share self-advocacy information with family and friend caregivers. Watch for more information in future editions! - Sue Scott Dolan Would you like to receive ’Niecie’s News” by e-mail? Please send an e-mail with your name, regular mailing address and e-mail address to: info@speaking.org 100 West Main Street, Suite 510 • Lansdale, PA 19446 • 800-867-3330 • FAX 215-361-3101 • www.speaking.org Please feel free to share this newsletter with self advocates or colleagues. 8 Niecie’s News • Spring 2008 The Pennhurst Advocacy Unit The Pennhurst Advocacy Unit is responsible to assist Pennhurst class members in maintaining their satisfaction with services and compliance with the Pennhurst Final Settlement Agreement. • The Pennhurst Advocacy Unit consists of four Pennhurst advocates and one supervisor. • All class members have an assigned Commonwealth advocate. • Pennhurst class members reside throughout the Commonwealth supported by counties and provider agencies in 23 counties/joinders across the Commonwealth. • Each advocate completes an annual review (minimally) of services to ensure that each class member is receiving the services to which they are entitled. • The nature, degree of involvement, and length of time that the advocate actively engages in support and service for an individual class member is predicated by the class member’s needs and wishes for the advocate to be involved. • Advocates visit class members in residential, day activities, social, and health-related settings. They attend annual, interim, emergency, and monitoring meetings as the urgency to individual class members dictates. • The advocates and the unit supervisor meet quarterly with the Supports Coordination Units in each of the five counties in the Southeast Region, and, as necessary, with other counties and the Office of Developmental Programs. The meetings are focused on system issues that arise during the quarter and afford the opportunity to engage in systemic solution and options. Because there are so few staff with such large caseloads, they need to hear from consumers, family members and advocates when there are issues involving Pennhurst class members. If you need assistance, contact Donna DiCasimirro, Coordinator of Pennhurst Advocacy Services at: 717-705-6614 or ddicasimir@state.pa.us Source: PA Department of Welfare website 100 West Main Street, Suite 510 • Lansdale, PA 19446 • 800-867-3330 • FAX 215-361-3101 • www.speaking.org Please feel free to share this newsletter with self advocates or colleagues. Speaking for Ourselves Tribute Wall MakeyourMarkPurchaseaBrick! Our new home in Lansdale, PA features a “Tribute Wall.” Take advantage of this special opportunity to honor a special person or event. Your purchase of a brick About the “Bricks” is a permanent memory of your contribution and supports the These bricks are not silent. They “speak”. Each brick ongoing work of Speaking For Ourselves. tells a story — celebrating the people and events that are important to SFO members and friends, our history and Join us at the Housewarming in early 2008 the Self-Advocacy Movement. when we unveil the Tribute Wall! Thank you for your support of Speaking For Ourselves! Speaking For Ourselves is an independent, grass roots, self-advocacy organization run by and for people with developmental disabilities. . DONATION FORM -ONE BRICK PER FORM PLEASE! 1. Your Information: Name ______________________________________________________________________ Address _____________________________________________________________________ City _______________________________________ State_______ Zip________________ 2. Select Your Brick: . $25.00 - SFO Blue Brick . $50.00 - Silver Brick . $100.00 - Gold Brick 3. Tell us how to inscribe your brick: Choose one of the following: . My brick is: “In Honor Of” someone or something . My brick is “In Memory Of” someone or something Tell us the name of the person or event you are giving the brick for: _____________________ Tell us how you would like your name to appear on the brick: __________________________ 4. Mail Your Completed Form with Payment* to: Speaking For Ourselves 100 West Main Street, Suite 510 Lansdale, PA 19446 *Check or Money Order payable to Speaking For Ourselves Speaking For Ourselves is a 501 (c)3 non-profit organization. All contributions are tax deductible to the fullest extent of the law. The official registration and financial information for the organization may be obtained from the Pennsylvania Department of State. 100 West Main Street, Suite 510, Lansdale, PA 19446 • 215-361-3100 • 800-867-3330 • FAX 215-361-3101 • www.speaking.org Speaking For Ourselves 100 West Main Street, Suite 510 Lansdale, PA 19466 INSIDE THIS NEWSLETTER From the Executive Director – Pg 1 Chapter Highlights – Pgs 2, 3, 4 Annual SFO Conference – Pg 5 SIS – Your Need to Know – Pg 6 Family Caregiver Corner – Pg 7 Pennhurst Advocacy Unit – Pg 8 Tribute Wall – Page 9 FREE MATTER FOR THE BLIND AND PHYSICALLY HANDICAPPED POSTAL MANUAL PART 138 SAVE THE DATE! SFO 2008 Annual Conference Saturday, June 21, 2008 Markyourcalendar Copyright © 2008 - Speaking for Ourselves and PA Developmental Disabilities Council. (www.paddc.org) Permission to reprint, copy and distribute this work is granted provided that it is reproduced as a whole, distributed at no more than actual cost and displays this copyright notice. Any other reproduction is strictly prohibited.