Volume 9, Issue 2
Don't Miss the Informational Session
March 18, 9:00 AM to 1:00 PM at SILO Offices
Can you support the idea of people with disabilities or seniors to live in the community?! Then we need you!!!! The Nursing Home Transition and Diversion Waiver (NHTD) is ready to be launched, but we need innovative people that can provide services to make it all possible! Please join us at the Suffolk Independent Living Organization (SILO) for a detailed informational session about the NHTD waiver on Tuesday, March 18 from 9:00 AM to 1:00 PM.
The NHTD is one component of a comprehensive strategy to assure that New Yorkers with disabilities and seniors receive services in the most appropriate, least restrictive setting. The program is based upon the philosophy that people with disabilities and/or seniors have the right to direct their own lives. We are excited to tell you that the Waiver offers people a community based alternative to nursing facility care. This means that many people living in nursing facilities will be given the option to leave, and others currently living in the community will receive the assistance they need to safely continue to live in their own homes if they choose. Services offered under the NHTD Waiver include:
Service Coordination, Assistive Technology, Community Integration Counseling, Community Transitional Services, Congregate and Home Delivered Meals, Environmental Modification Services, Home and Community Support Services (from licensed home care agencies), Home Visits by Medical Personnel, Independent Living Skills Training Services, Moving Assistance, Nutritional Counseling/Educational Services, Peer Mentoring, Positive Behavioral Interventions and Supports, Respiratory Therapy, Respite Services, Structured Day Program Services and Wellness Counseling Service.
NHTD Community Information Night:
Thursday March 20, 2008 ~ 5 - 7PM
Long Term Care as we know it is changing! SILO is partnering with the NY State Department of Health (DOH) to change the way long term care is provided in the community.
Medicaid currently pays more than $100,000 per year for an individual to live in a nursing home. When people with disabilities enter a nursing home they often lose their right to make such decisions as when to get up, when to eat and what to wear. There's oftentimes a stripping of a sense of individualism that can often lead to depression and anger. Community based care allows individuals the opportunity to decide the environment in which they receive care services. The individual may choose to move back home with family, in a supported housing environment or even on their own. Community based care saves taxpayers money! It is more cost effective in addition to providing individuals with disabilities the opportunity to participate in their community.
Meet Bonnie Hope, Regional Resource Development Specialist for the new Nursing Home Transition and Diversion, her team, and other SILO staff as we launch this dynamic new program with an informational community meeting. Don't miss this exciting opportunity to learn about the Nursing Home Transition and Diversion Waiver (NHTD) and how it can change and improve the quality of life for thousands of Long Island residents.
When first admitted to my particular nursing home, this is what I experienced and felt from hour one -
* darkness everywhere, from the inside out * despair * devoid of civil rights * alone * grief-stricken * emptiness * stuck in an endless and on-going tunnel * personless * powerless * deserted * shut in * shut up'd * dependent * devastated * dictated to * critterless * joyless * discredited * poor * stuck * "you" became "we" * disparagement * murkiness * companionless * loneliness * scared * helpless * impotent * defenseless * unprotected * ineffectual * violated * deceased * colorless * abandoned * impoverished * needy * mentally deficient * cold * dismissed * demeaned * distressed *
I felt all these things and more until I began looking at my options. We've all heard the expression "It's not what you know, it's who you know." For me, this was an absolute. My initial help came from a NYS Ombudsperson (who helps residents with any problems they may be having at their facility). She started the ball rolling — and I shall be out of the nursing home in two to three months now.
You MUST LEARN TO ADVOCATE FOR YOURSELF!
SILO's new office is conveniently located near the S6A, S58, S60, and S61 bus routes. To travel by train, take the S6A from the Ronkonkoma Station or the S61 from the Medford and Port Jefferson Railroad Stations. The S60 also goes from the Port Jefferson Railroad Station.
Did you vote in the primaries? If so, the National Council on Independent Living (NCIL) wants to hear about your voting experiences. Send your experiences to Deb Cotter at deb@ncil.org and Kathy Hoell at khoell@cox.net
Lisa Roller, a VESID Counselor based in Hauppauge, sent in feedback regarding an article from the last issue of the Beacon entitled "VESID Vocational Evaluation: What you Can Expect at UCP of Suffolk". Regarding VESID's programs in general, including the assessments at UCP, she stresses the importance of consumer self-advocacy and goal-setting. "UCP's evaluative tools are the national standardized methods used by all vocational programs," said Roller. She has had "experiences with consumers expressing dissatisfaction with UCP and its assessments." She adds: "For the outcome to be successful, the relationship between consumer and staff must be two-fold. The consumer provides input, questions and concerns as the staff guides and assesses. The consumer leads the relationship," explains Roller. She encourages all consumers who have comments and feedback about assessment experiences to address them with their VESID counselor directly. If you are concerned about wording your comments effectively, we suggest you contact SILO, where you can speak with people who have been down the road of self-advocacy before.
Roller also pointed out the need for consumers to always ask questions, and to ask for the services they need. "Sometimes, a VESID counselor may not present services, such as equipment, until the service is warranted for a particular action-training, employment. Given the nature of funding and availability, UCP may not carry all the latest technology on site. However, the UCP building houses the New York State TRAID program which is an assistive technology service that provides tools and methodology to find out about the latest equipment. The program helps with gaining access to learning where to get such technology." Above all, we recommend you maintain an open mind and a positive attitude.
On February 4, President Bush released his budget proposal for fiscal year 2009. You can find news and resources regarding the budget at www.budget.gov.
In their budget proposal, the Bush administration tries hard to keep automatic, or mandatory spending down. This means that they want to cut down the type of spending that gets passed automatically - if our legislature does nothing to stop it. The intention is to save $16 billion in 2009 and $208 billion over five years, with this approach of cutting mandatory spending across the board. The Bush administration also proposes curbing Medicare growth from 7.2% - the current rate - to 5%. According to a February 4 press briefing by Jim Nussle, director of the Office of Management and Budget, this curb in Medicare growth will not affect patient access. Instead, the savings will come from cutting the typical increase in funds that doctors, hospitals, and other providers receive because of inflation. Private insurers in Medicare will still collect $150 billion over ten years in taxpayer-supported subsidies, while "reporting record profits due to the privatization of Medicare", according to the National Council on Independent Living's Weekly Advocacy Monitor. The budget also proposes spending $30 billion to privatize social security.
According to NCIL's Advocacy Monitor: State Grants Part B program awards formula grants to States to expand and improve independent living services and to support the operation of Centers for Independent Living. The President proposed funding Part B at $22.2 million.
Centers for Independent Living Part C program makes competitive grants to support a network of consumer-controlled, nonresidential, community-based centers that provide a broad range of independent living services. The President proposed funding Part C at $73.3 Million, maintaining the 2% across-the-board FY 2008 funding cut to both Parts B and C for FY 2009. This proposed funding takes IL back to FY 2004 levels... Given inflation among other factors, this level funding is essentially a cut to IL funding... Take Action: Tell Congress to increase funding for Independent Living, and consumer-directed services for people with disabilities! Get involved locally by calling SILO and joining the solid group of disability advocates who create change in the community every day.
By Krista Giannak
On Monday, January 28, I took a bus to Albany with five of my fellow staffers and volunteers. We started our journey, bright and early, to the New York Association on Independent Living (NYAIL)'s Disability Legislative Awareness Day. This was my second visit to Albany with SILO, and I enjoyed showing the newer people what I have learned, as well as meeting people from across the state. As we walked (or rolled, as the case might be) through the Legislative Office Building, we met elected officials and toured their offices. We also met other people from across the state who share our mission of independence and acceptance for people with disabilities. One of our volunteers, Theresa, commented on the rare aspects of a trip like this. "It was nice to have all the decision-makers in the same building, at the same time. I saw offices for people whose job titles I never knew existed," she said.
That day, I found that there is no substitute for getting involved in the political process first-hand. "The trip got me a lot more interested in advocating, because I didn't know much about it beforehand," explained Katie, one of SILO's youth volunteers, travelling to Albany for the first time.
Our group also learned first-hand about accessibility. We saw features such as Braille signage and elevators throughout the Legislative Office Building. Four people in our group that day used wheelchairs, and we also discovered that, despite many laws on the books requiring full accessibility of government programs and services for all people, there are still many travel difficulties. For example, we had to take several separate elevator trips to maneuver through parts of the building where many other people use one single stairway. The rest rooms near The Well area and cafeteria, where we spent much of our time talking with other participants, were not accessible to wheelchairs despite the signs stating otherwise. A wheelchair could not fit into any of the stalls, so a wheelchair user had to either get assistance, or maneuver into the stall without the chair. Another issue was the breakdown of the lift, which was one of two ways to get into the senate session, where bills relating to disability were being discussed. "I was discouraged about not getting down to the floor to the Senate session," said Danny, another volunteer at SILO. Katie voiced her frustration this way: "We go there to fight for disability rights, but yet their facilities aren't accessible."
We here at SILO look forward to future trips to Albany, and we also plan to visit our elected officials here on Long Island as well. Our elected officials need to hear the united voice, and see the faces, of people who need accessibility features to be included. If you want to truly be a part of your community, then call SILO to join us in promoting disability awareness and acceptance. "The trip to Albany was an invaluable opportunity for future advocates to get a behind-the-scenes look at state government," said Kieran McGovern, SILO's Systems Advocate. Please join us in future advocacy projects.
Governor Spitzer has released his budget proposal, complete with amendments, for fiscal year 2008-2009. The budget will now go to the legislature for its approval. The new state fiscal year will start on April 1. Governor Spitzer has released a balanced budget which will not raise our taxes. The governor's budget includes:
Receive The Beacon and Advocacy Related Action Alerts In Your Email Box! Just visit our Web site at www.suffolkilc.org and click on the link to join our mailing list. You can also email us at news@suffolkilc.org to sign up for our email lists. Save a tree (or 2) by signing up today.
SILO's Youth Leadership Council is a group of energetic high school students with disabilities who discuss issues and concerns that students have in their schools and communities. Topics include: advocating for your own educational future, improving attitudes toward disability, access issues, transportation and recreation, and more.
Council members will work toward real solutions to the barriers that stand in their way, and their advocacy efforts will forge a path for students with disabilities that come after them. If you would like to be a part of this dynamic group, please give Kieran McGovern a call at the office. As Kieran puts it, "This isn't the Mickey Mouse Club, we're a legitimate group of conscientious young people, and we're not pushovers. We know there is strength in numbers."
If you or someone you know are interested in participating in this dynamic new group of youth to address change, please contact Kieran @ SILO today for more information.
Be sure to claim the Earned Income Tax Credit (EITC) this tax season! The One-Stop Employment Center in Haupauge has a free Volunteer Income Tax Assistance station that will be available weekdays from February 1 through April 15 by appointment. The volunteers have been trained and certified by the IRS to help you file for the Earned Income Tax Credit (EITC) for workers with low incomes. The credit will reduce the amount of taxes a person owes, and may be returned as a refund. Plus, the EITC does not count as income or resources for Medicaid, Food Stamps, SSI, federally assisted housing programs or eligibility for TANF cash assistance. Amounts vary depending on your family's earned income and number of qualifying children.
The following is excerpted from a bulletin from the office of County Executive Steve Levy:
YOU MAY BE ELIGIBLE FOR EITC IF:
For more information or to make an appointment, call (631) 853-6544. The Suffolk County One-Stop Employment Center is located at 725 Veterans Memorial Highway in Hauppauge.
Venus, Carmen and Pablo are three Chihuahua puppies born without their front legs, who now use custom-built, padded aluminum carts, fitted with two light foam wheels. The North Shore Animal League rescued the puppies and equipped them with the mobility aids, manufactured by Eddie's Wheels of Shelburne Falls, Massachusetts. The puppies use the two-wheeled carts for about ten minutes at a time, helping them with their postures. All three puppies now live with a veterinary technician. This information is according to a January 11 Newsday article.
19-year-old Kevin Simmons, a senior at West Babylon Senior High School, is one of 27 students nationwide to receive the Council for Exceptional Children's "Yes I Can" award. He was nominated for his outstanding community service. This year, he is president of West Babylon's LEO (Leadership-Experience-Opportunity) Club, a youth organization sponsored by Lions Clubs International. The group guides athletes at the regional Special Olympics competition in the spring, and is also raising funds for a local child with a brain injury. He is also in the drama club and a community service club called Scope, and he participates in the literary magazine. And, he just happens to be hearing impaired. For more information, check out the February 10 issue of Newsday.
A Newsday survey shows students in affluent school districts were five times more likely to be diagnosed with autism, according to a survey of all Long Island school districts with 500 or more students. The survey also included racial data, which show that districts with the lowest autism diagnosis rates are mostly black or Hispanic. There are such differences in the classifications of other disabilities. A January 10 Newsday article includes possible explanations for these disparities. Part of the reason may be more limited access to health care for poorer people. Another explanation is that parents of minority students, especially those whose native language is not English, are concerned that their children will be stuck in classes that are below their abilities because of the language barrier, and that a label of "autism" would just make this more likely. People in more affluent areas may also be more aware of the benefits of correct diagnosis, such as extra time on tests and reasonable accommodations to help students learn better.
SILO, now open to the Community every Thursday evening until 8:00 PM, is hosting workshops, discussion groups, film screenings and guest speakers who will address all aspects of living with a disability. Everyone is invited to participate in these informative evenings, scheduled from 5:30 PM- 8:00 PM. Refreshments will be served.
Glenn Campbell, attorney and SILO's Programs & Services Manager will present a life-enhancing workshop on how to develop self-esteem and self-confidence and how to become your own best self-advocate. Learn how to set important goals and how to develop the positive thinking and attitude you'll need to reach them.
Representatives from Social Security will explain benefits in a clear and easy to understand format and answer questions about Social Security, SSI, SSD and Work Incentives.
A discussion about social issues, communication problems, and real life experiences. This provocative workshop is open to all, whether you are living with a disability or interacting with someone who is.
Valuable information for students, parents, teachers, and guidance counselors about how to prepare, execute and complete a successful transition plan from school to the real world.
This inter-active seminar will focus on how to look for and obtain a job in today's workforce. Resume writing, interview skills and how to dress for success are just a few of the topics covered in this valuable tool building evening.
A unique opportunity to bring your questions and concerns about how it all works and how it impacts you. Representatives from Medicaid and Medicare will make an eye-opening presentation and be available to speak with the audience.
Learn about the latest developments in Assistive Technology and how it can help you to live more independently. Explore what's on the market and find out how you can access it.
This entertaining evening will explore how disability has been portrayed in movies, television and print media. Enjoy a review of film clips, books, magazine and newspaper articles and television excerpts from the past fifty years. An animated discussion, moderated by a special guest speaker will follow.
Please join us on Saturday March 29, 2008 8 a.m. to 5 p.m. Chancellors Hall, Stony Brook University @ Southampton.
For the last two years, hundreds of people have gathered in Chancellors Hall to hear from experts in the field of autism and developmental disabilities about services, accessing programs and negotiating systems. This free event draws expert psychiatrists, psychologists, attorneys, advocates, educators and service providers and is always a favorite of families, elected officials and professionals. Don't miss the opening session as the East End Players, a theater group featuring cast members with developmental disabilities, perform excerpts from their original theatrical production of "You are a Petunia in My Garden." We will also hear from conference sponsors, elected officials and representatives from NY State.
For the third year we will honor the spirit of Abby Irwin at our Annual Day of Awareness Conference for Developmental Disabilities on the East End. Abby Irwin is fondly remembered as a fierce advocate and friend of people with disabilities on the East End.
Navigating the Special Education System- Birth Through 21 and Beyond, Suffolk Medical Home — Toolkit for Families and Professionals, Fostering Peer Relationships, Children with Autism Spectrum Disorders, Non-Medicaid Service Coordination, Motor and Sensory Development in Children, Multidisciplinary Approaches to Challenges in People with Developmental Disabilities, Residential Programs for Children with Developmental Disabilities, The Adult World of Programs for People with Developmental Disabilities, Eligibility for Government Benefits and Programs (SSI, SSD, Medicaid, OMRDD), Child Protective Services — Knowing your rights as a Parent, Community social and recreation resources. Meet with the Providers
Register on line at www.eed-a.org or call East End Disability Associates, Inc. at 631 369-7345 Ext 107 for a registration packet.
This free conference is sponsored by East End Disability Associates, The Cody Center, The Center for Child Development of the Hamptons, The Long Island Parent Center, The Human Services Departments of the towns of East Hampton and Southampton and the NYS Developmental Disabilities Planning Council. Light breakfast and lunch will be provided.
The Long Island Center for Independent Living, Inc. (LICIL) has developed the LICIL Living Library for the use and benefit of individuals interested in the Disability Experience and its rich History and Culture.
Conveniently located at LICIL's Levittown offices, this lending library offers a unique opportunity for all Long Islanders. Designed by LICIL employees with extensive professional and personal knowledge of a wide range of disabilities, The LICIL Living Library offers access to a broad spectrum of disability related materials. Patrons of the library will find everything from fiction and biography to reference materials, feature films and everything in between.
Adaptive technology is also available for visitors who, due to sensory, cognitive and intellectual disabilities, may need reading alternatives. Access to a computer with updated accessibility components is also offered for those wishing to use the World Wide Web.
The LICIL Living Library will also sponsor periodic events to enrich opportunities for the community. Located at 3601 Hempstead Tpke, Suite 500, in Levittown, hours of operation are Wednesdays from 6:30 p.m. to 8:30 p.m. and Thursdays from 1 p.m. to 4 p.m.
The Long Island Center for Independent Living, (LICIL) is a not-for-profit, 501(c)3 organization providing a variety of services to people with disabilities for more than 27 years.
Join the Board of Directors, staff and friends of the Suffolk Independent Living Organization (SILO) at our Annual Meeting on Monday March 31, 2008 from 1:00 PM to 4:00 PM at SILO, located at 3680 Route 112 in Coram, NY 11727.
2008 is the best year yet for SILO, filled with great news, exciting and innovative new programs, upcoming events and more! Celebrate with us and enjoy a buffet of snacks, hors d'oeuvres and desserts. Enjoy welcoming our impressive new staff members and participate in raffles, informal networking and the launch of our 2008 Membership Drive. SILO, conveniently located and reachable by public transportation is wheelchair accessible. Should you require a reasonable accommodation for this, or any SILO activities, just call us! Call 631-880-7929 for more information or to RSVP.
Wednesday, March 19, 10 AM-3 PM at the New Yorker Hotel 481 Eighth Ave, Manhattan. Pre-registration is required. Visit www.eop.com. For more New York City events, visit the Disabilities Network of New York City at: www.dnnyc.net
This week long celebration will begin with a FUN RUN for Disability Rights on Sunday, April 27th, continue with three days of Grassroots Activism and culminate on May 1st with a day long Exhibition/Dinner/Show at the Holiday Inn Capitol. Visit www.adapt25.org or call (303) 733-9324. Send email to ADAPT@adapt.org.
A round table discussion will be hosted by SILO staff about how to navigate the Suffolk County Accessible Transit System (SCAT). A dialogue about the responsibilities of the rider and bus company as it relates to no shows, late arrivals, early arrivals, coordination of group trips and other topics that will lead to maximum usability of the services. Outcomes and feedback from these meetings will be shared with Suffolk County Transportation representatives. This is NOT a complaint session: 5:00 PM- 7:00 PM on March 6th and April 3rd
The Federal Transportation Administration (FTA) offers information on how to file an ADA discrimination complaint, eligibility requirements for para-transit services and a toll-free assistance line (1-888-446-4511) to get answers to questions about accessibility requirements for public transportation for people with disabilities. Visit www.fta.dot.gov/civilrights/civil_rights_2360.html.
The following is taken directly from the Roving Activist Blog:
Calling all youth with disabilities between the ages of 18 and 30!
Do you have that anger, a fire in the belly, mad passion, and a sense of urgency about disability rights and issues?
Have you always wanted to do something but didn't know how? Have you always wanted to fight for disability rights in the style of Dr. Martin Luther King, Jr., or Mahatma Gandhi?
Well, here is your chance! The ADAPT Youth Summit will take place this year in Chicago from June 20-23, 2008. Veteran ADAPT members will facilitate and provide training in direct and grassroots action! Applications are due March 16th, so don't delay! If you have any questions about the application or the youth summit, please call or e-mail Rahnee Patrick at (312) 663-1292 or rahneek@hotmail.com
At SILO, we value the ordinary lives and contributions of everyday people with disabilities. Even if writing is just not your thing, we can help you tell your ordinary stories. This newsletter is for you, so call Krista at the office, or email news@suffolkilc.org with any ideas, comments, or suggestions. As one of our consumers, named Peaches, jokes, "You could be famous!"
SILO is committed to providing the most comprehensive Independent Living services to our consumers. If you are ever unhappy with any interaction you have with SILO staff, you should request a copy of the agency grievance procedure, which will be sent via mail, fax or email. Additionally, an enlarged copy of this procedure is on display inside the agency.
7 PM to 11 PM
Wear your best pajamas, watch a great flick, meet new friends, eat bags of popcorn and enjoy a cool night out.
Break out, hang out and dance, dance, dance under the mirror ball and club lights. Refreshments, raffle prizes and always a ton of fun! Club SILO — Be Seen!
SILO runs fundraising bingo games each Friday - Sunday at the Suffolk Bingo Palace in Coram. Volunteers are always needed and new players are always welcome. Contact Kathleen today for more information on bingo games and how you can become involved. Groups welcome.
Calling all High School students!
Visit SILO every Thursday from 4PM-7 PM and enjoy hanging out with friends, open discussions, films and snacks in the SILO Youth Space. Bring games and other fun things! Bring your homework if you want, too!
*'Youth Space' is an area dedicated for use only by High School students. There are other spaces for our non-youth to meet as well.