Volume 9, Issue 3
Dozens of people give hundreds of hours to the agency through volunteerism. A big part of the SILO volunteer experience is diversity, both in the people who volunteer and the many different duties they perform. SILO’s volunteers are of all ages and ethnic backgrounds. Lots of disabilities are represented here. Some people use wheelchairs or walkers; others use canes or large print; still others have reading or memory difficulties. Tony, who volunteers as part of a student internship program for his online classes at the University of Phoenix, an accredited university, says "Rather than just book learning, I have a first-hand view, which no amount of study could give me."
Some volunteers come to SILO because they want to spend time in a place where they are accepted for who they are. SILO’s Enrichment Workshops on Tuesdays and Thursdays help volunteers explore their strengths and in what they can excel. Volunteers learn by their peers, other people with disabilities, that they can indeed lead a full and happy life. "I hope that I’ve taught some of the people here about how blind people can live on their own," [sic] says Marilyn Tucci, a volunteer who facilitates many of the workshops SILO offers on Tuesdays and Thursdays. "Every day is different here. It makes it interesting because there are always different things going on."
Staff and volunteers share their knowledge and experience in a positive environment where people gain confidence. "I feel comfortable coming here. I learn a lot." explains Roderick Smith, who volunteers in several different roles. "All my life, I wouldn’t admit that I was a handicapped person until I came to SILO," explains Anna, who coordinates the volunteers on Tuesdays and Thursdays. She says that she no longer denies her disability as in the past, she accepts it and feels good about herself. "I used to be too embarrassed to use a walker, but when I saw that Chester wasn’t embarrassed, I realized it was so much easier," says Tony.
Regardless of a person’s initial reason for coming to SILO, they discover a place where independence thrives. "Rather than sitting at home waiting for something to happen, I’ve actually met people and made connections," says Tony, who is now pursuing part-time employment because of his own SILO experience, his knowledge regarding benefits and previously unknown work incentives.
When volunteers see all the great work that people with disabilities can accomplish, they often want to speak out for themselves and others. "I love the advocacy training, especially when we go to conferences," says Danny Sundberg, who volunteers at SILO three days a week. He says that his experiences at SILO have inspired him to go to college and get a degree in human services to become an advocate.
"I feel a sense of great accomplishment when I’m here," says Anna. "I don’t feel so handicapped. I feel more like I’m helping those more in need than I."
Talk about a gold mine of knowledge; anyone who has a disability and needs a place to learn their options, should consider becoming a volunteer at SILO. SILO is invaluable on so many levels, and you just might discover that you can do more than you ever thought possible and help SILO reach their goals at the same time! Become a valuable addition to SILO's fun, energetic, and diverse team of dedicated volunteers. You will gain work experience to add to your resume, and your efforts will help SILO to empower people with disabilities. We currently have a great need for volunteers in a number of areas. Check out the volunteer positions we have available listed later in this issue of the Beacon.
Brookhaven Clean-Up and Plant-In at SILO
Saturday, May 17, 9:00AM-3:00PM at SILO
Volunteers needed for this wonderful way for people with disabilities to show their commitment to their community. Did you know that broken glass makes things very difficult for wheelchair users? How about all the litter that people carelessly throw on the ground for people to trip over? Now is your chance to make a difference! Snacks and drinks will be available for all volunteers. For more information, call Kathleen at SILO.
Volunteer for some water fun in the sun on Saturday, June 21. Whatever your skills, we’ve got a job for you. SILO needs volunteer washers, dryers, and greeters for our summer carwash. Or, if you can’t volunteer, just drop by SILO in Coram to get your car washed at our great low price of $5 per car and $7 per truck.
As Election Day draws near, the Suffolk Independent Living Organization (SILO) wants you to be a part of the action. Here at SILO, we live by one major political philosophy: Nothing about us without us. Every year, our government makes rules and laws that affect our daily lives, and some of these are especially important to people with disabilities. We are a non-partisan organization that respects your individual political views and we believe that all people should have their views heard in government. Every vote counts, especially on the local level. A few precious votes could be the deciding factor in whether or not the government will cut funding to your favorite local community program, or support your cause. If you are a U.S. citizen, 18 years or older, or if your 18th birthday occurs within this calendar year, then by law, you can register to vote right here at the office. Please call us at 631-880-7929 and let us know that you want to make a difference!
Ever really want to learn appreciation for the little things? All you have to do is give up your personal freedom for a year or so; quite a price for a lesson, huh? I don’t suppose anyone would do it intentionally. I certainly didn’t.
With the help of many, many people, not the least of which was the organization SILO, I am, at long last, living in my own wheelchair accessible apartment not far from where I work. I moved on the first of April.
My life re-began on the second day of the month. I woke in my big double bed, unencumbered by railings and sheets that others had probably died upon. I slid out of bed and felt glorious carpet in between my toes. No one was slamming a tray down on my "over-the-bed" tray table. In fact, no one was there! Solitude at long last!
I made my way to the kitchen and began preparing real coffee, brewed just the way I like it... in my Krups, with freshly ground French Roast beans. A dab of half ‘n half and a teaspoon of sugar and I was good to go! I closed my eyes and took in the aroma of FRESH. I tasted slowly to savor. I finished the first cup and quickly made a second one -- just as hot, fragrant, and memorable as the first.
Next on the agenda was doing something I’d missed doing for a whole year! I pulled down all the blinds so that no one could see in, and took off all my clothing. I hadn’t stood naked without that dreaded feeling that someone, somehow, and for some ridiculous reason, would just open the door and step inside, all the while explaining how I "ain't got nothing" they hadn’t seen before.
Then it was bath time. Not a real bath in oh, about five years... I craved relaxing in the hot water, breathing in the steam floating over the top of the water, and closing my eyes to experience the sheer comfort of the bath. And life was good again.
The Department of Labor may have a position for you, right here at SILO, as part of its initiatives to get people working. Currently, their programs focus especially on youth and on mature workers with disabilities. Call SILO today to find out about opportunities at SILO, and to get useful tips from our resourceful staff on finding and keeping a job.
Scat Chat: First Thursday of Every Month
May 1, 2008: 5:30PM - 8:00PM @ SILO
also...
Public Hearing on Fixed Route Transportation & Paratransit Services
Let YOUR Voice Be Heard!
May 7, 2008: 3:00PM-6:00PM
Meeting Room, H. Lee Dennison Building
100 Veterans Memorial Highway, Hauppauge
Want to do something about Suffolk County’s public bus system and para-transit service? Then come to SILO for Scat Chat on the first Thursday of every month. On May 1, we will be preparing testimony for a hearing on May 7. Please join us along the road to real solutions to Suffolk County’s transportation problems. Attend our Scat Chat at the SILO offices, and mark your calendars for the public hearing on May 7.
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.
I met Edith toward the end of my incarceration (Yes, that’s what I really call my stint in "The Home"). She always wrapped herself in her warmest slithery soybean green - colored down jacket, and had this wonderful black scarf around her neck... an oh so warm, wide and soft black yarn framing her face.
Though Edith appears calm, there’s a thin coat of anger slathered all over herself, way too frightening for her to own completely. Her face shows the wear and tear of tough breaks, hard times, and difficult people. We’d meet out there under the gazebo, and talk about her life. I would talk about SILO, and nudge her to control her own life and advocate for herself. She, on the other hand, expounded upon every single reason in this whole galaxy why she isn’t doing that exact thing this week, or next, ad infinitum, saying, basically "Did I tell you what the kids aren’t celebrating with me this year?" So far, her reasons wrap her up like heavy Icelandic wool, much like how she wears her jacket. She is tired from the effort of going for the win. Frozen in time, I send warm vibrations and white light her way, to push her a little harder to believe there is another life. I hope she can feel it and turn her anger into determination. Edith is not solitary in her bitterness and resignation. Hate abounds at the home, and it’s not just the women. To the men who sit and hate "the wife" or "the ex" or "the bitch that now has all the money and the kids," I want you all to know that there is a better way. I am living proof.
The very last night I was at "The Home", Edith rolled into my room to say goodbye and wish me luck. I gave her a few more SILO business cards and a big hug! She then scooted over to one side of her chair and pulled something out from under her thigh. It was that beautiful scarf we both loved. "Bobbi, you have helped me more than you’ll ever know. You have listened when I needed to talk. You have pulled me out of the mud. Please take my scarf. I want you to have it. I know how much you love it." Godspeed, Edith. Godspeed. SILO is waiting.
An Assistive Technology and Resource Fair for People who are Blind or Visually Impaired
Friday, May 16, 2008 ~ 10 a.m. to 4 p.m. ~ Free Admission
The Suffolk County Office of Handicapped Services was an advisory member of the NY Statewide Assistive Technology Advocacy Project. One of the services of the project is to act as a clearinghouse for information and resources, and as such, the Office of Handicapped Services is happy to announce that the Outreach Services Department of the Suffolk Cooperative Library System and the Long Island Talking Book Library for the Blind and Physically Disabled are sponsoring a fair.
Many people who have difficulty seeing regular print are unaware that there are devices such as electronic magnifiers, large type watches, talking clocks, computers that speak and a variety of other items that can make their lives easier. Long Island residents will have an opportunity to find out about the latest "access technologies" and to find appropriate service providers at the fair. Companies will demonstrate their latest products and there will be representatives from a variety of organizations that provide related services for people who are blind or visually impaired.
The fair will be held in the auditorium of the Suffolk Cooperative Library System, which is located off of exit 55 of the Sunrise Highway. The library is on the North Sunrise Service Road, just east of Route 101. Admission is FREE, with free light refreshments available throughout the day. For additional information or to request special accommodations due to a disability, call toll-free at 1-866-833-1122 and ask for Talking Books.
On Tuesdays and Thursdays, SILO hosts workshops for volunteers and visitors, so that they can learn new things and practice new skills. Typical discussion topics include news and current events, health issues, benefits information, employment advice and more. We invite you to join us each Tuesday and Thursday from 10AM to 4PM for these great workshops. You can come for the whole day or just a portion of it. Bring your lunch!
May 1: Mental Health Issues. Do you or someone you know live with anxiety or depression, eating disorders, and other self-esteem issues? Learn about these important issues, and what you can do about them.
May 6: Gay and Lesbian Issues. This discussion will cover issues that gays and lesbians face every day, including community acceptance "coming out", and discrimination from within and outside the disability community.
May 8: Racial Diversity. Celebrate human differences with us, and discuss issues such as discrimination and community acceptance.
May 13: Women’s Issues. A private discussion including only women and the issues they face living with a disability.
May 15: Men’s Issues. A private discussion including only men and the issues they face living with a disability.
May 20: Journal Writing. Journaling is a great way to organize your, thoughts, life, set goals for yourself, or just vent about your day.
May 22: Relationships and Disabilities. Ever feel excluded in daily life because of your disability? Perhaps you find disability gives you some unique insight. Maybe you just want to forget about disability, treating people with disabilities like everyone else. Talk about your concerns in relationships with family, friends, and coworkers, and ways to improve your communication skills that can lead to a more healthy relationship.
May 27: What’s Holding You Back? Ever feel like you’re just not motivated anymore? Participants of this workshop will talk about the "stinkin’ thinkin’" and other issues that hold them back, and how to get back on track.
May 29: HIV/AIDS. Get rid of the myths and learn the real truth about real people living with the disease.
June 3: Fear of Independence. Participants will share their fears openly, and encourage one another to take the next step toward gaining or maintaining independence.
June 5: Drug and Alcohol Addiction. Discuss why people start, and how people can stop?
June 10: Planning for Your Future. Talk about realistic steps you can take to realize your dreams and goals. Topics include educational, family, and other dreams.
June 12: How Does Society View the Disabled? Discuss how far society has come in accepting disability, and misconceptions society still holds.
June 17: Recreational Activities. Talk about what you do for fun, and get some ideas for how to spend your spare time.
June 19: Disabilities and Equality. Discuss how to keep the system fair and equal for all people.
June 24: Spiritualism or Not. Discuss how, and if, spirituality plays a part in your life.
June 26: Peer Pressure. Talk about how peer pressure affects your life, and ways to overcome it.
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. Speakers are subject to change. For details, call 631-880-7929.
May 1: Students: Make the Most of Your Summer!
This informative workshop will offer students and their parents an overview of summer work programs and volunteer opportunities. Learn how students can obtain a part time job through the Department of Labor during the summer vacation. Additionally, a SILO staffer will explore the nature and benefits of volunteerism.
May 8: Traveling as an Individual with a Disability: Tips & Tricks
Edward Ahern, SILO’s Executive Director will cover everything you need to know about travel issues for people who are living with a disability. Planning, safety, using public transportation, the correct use of mobility aids and coping with service disruptions, delays, and emergencies are but a few of the evening’s topics.
May 15: Accessible Recreation & Parks Opportunities
Accessible parks and recreation opportunities abound in Suffolk County and throughout NY State. Whether it’s trails, boating, golf, basketball, softball or more, Something for everyone. Find out about the Green Key which offers a host of benefits to people with disabilities. Get info about our exciting Parks & Trails NY trail assessment project if you enjoy fresh air, nature, fun and a sense of adventure.
May 22: Disaster/Emergency Preparation
For Suffolk County residents with mobility, sensory and mental health disabilities, emergencies such as fires, floods electrical black outs can present a life threatening situation. Planning ahead can protect you and your family when disaster strikes. Creating an emergency survival kit is one way of planning ahead. Bruce Blower, Director of Suffolk County Office of Handicapped Services will address all of the elements of successful Emergency Preparation.
May 29: Covered Dish & Movie-"Warm Springs"
The true but little-known story about the physical and spiritual evolution of the man who would become president. Warm Springs follows Roosevelt's story from the heady times before he contracted polio through the initial onset of his polio, subsequent despair, and eventual rebirth. Enjoy a pot-luck supper, great film and great conversation!
June 5: Utilizing Suffolk County Transit: Your Options.
Learn how to use fixed route and paratransit in Suffolk County. A county representative will explain how you can maximize your transportation options and will discuss reduced fare program for seniors, accessible fixed-route buses and travel for persons with disabilities.
June 12: Housing: Fair and Accessible
Title VIII of the Civil Rights Act of 1968, together with the Fair Housing Amendments Act of 1988, is called the Fair Housing Act: It states that discrimination based on race, color, national origin, religion, sex, familial status, and handicap is illegal in the sale or rental of most dwellings. A spokesperson for LI Housing Services will be available to discuss fair and accessible housing issues and answer your questions.
June 19: Chips & Dip & Flick- "At First Sight"
When a New York architect falls in love with blind, charismatic masseur she convinces him to undergo experimental surgery that will allow him to see the world as she sees it - in all its chaotic, colorful glory. In this new, exciting time together, they soon learn that all gifts come with a price and vision is comprised of a multitude of senses. Starring Val Kilmer and Mira Sorvino. Enjoy assorted dips & chips and a top rate movie!
June 26: Social Security: Applying for SSI For Your Child
Caryl Tetro, Area Work Incentives Coordinator for Social Security will discuss what parents need to know about the age, application and eligibility guidelines and requirements needed to obtain Social Security Supplemental Income (SSI) for their child. Bring your questions and your children for an evening of great information!
Events on Thursday nights are open to the general public and we welcome all. SILO service staff are always available to help you begin working on a plan for greater independence. There’s also Youth Space — a room with computers where young people can hang out.
July 26, 2008: 10:00AM - 4:00PM @ SILO
SILO invites community members, agencies and organizations to make this year’s ADA Celebration the best celebration ever of the independence of people with disabilities! There will be delicious food, live entertainment for the whole family, vendors, fun raffle prizes and more. Call us today to find out about sponsorship or vendor opportunities, and reserve a space in our program. The Americans with Disabilities Act (ADA) is one of the most comprehensive pieces of equal rights legislation for people with disabilities to date. It provides for equal access to people regardless of disability and ensures that America continues to be the land of opportunity — for all Americans.
A chance to emote your healing mind through Poetry, Words Of Wisdom, Life Inspirations or more ~ Date: May 15, 2008: 6:30PM Refreshments Served! To RSVP, get your name on the schedule or for more information contact Khadijah or Fred at 631-880-7929
Bingo Volunteers: 21 years or older, needed Friday, Saturday and Sunday evenings and/or Sunday afternoons, at least once a month. Bingo is our biggest source of fundraising revenue, and we need volunteers to keep the games going!
Maintenance: Keeping our space clean and professional for everyone. whether you scrub desks, sweep floors, landscape, or help with the trash, we want you to consider yourself part of our team.
Park and Trails Assessment: You can enjoy nature and change your community at the same time! Help us determine the accessibility of our local parks and trails so that people with disabilities can join in the fun.
Special Projects: Assist us in helping the Town of Brookhaven determine the correct accessibility for ALL Brookhaven’s inhabitants.
Fund Raising Assistants and Development: Help SILO fulfill and expand its mission of delivering the most comprehensive services available on Long Island.
Photography: SILO wants to feature unique pictures in its disability-themed children’s book, and we need your help. We need volunteers who can add life to our book with photo shoots.
May 9, 2008: 10AM-3PM ~ Sagamore Children's Psychiatric Center, 197 Half Hollow Rd, Dix Hills
This forum is one in a series of forums across the state administered by the Office of Mental health, whose purpose is to improve the mental health and well-being of children, youth and families in New York State. Speakers will include people from government, parent/family advocates, children’s service agencies and more. For accommodations, call Lisa Legendre at (631) 761-2820.
SILO, under contract with the New York State Department of Health, administers the Nursing Home Transition and Diversion (NHTD) Medicaid waiver, which helps people avoid unnecessary stays in nursing facilities, and frees those residents of institutions who would prefer to live in the community. Medicaid waivers fund services that may not always be covered under regular Medicaid insurance.
Over 150 people attended SILO’s two information sessions for potential service providers, and we had about 20 people at a community question-and-answer session. Applications are coming in, and the process of interviewing providers and reviewing their policies and procedures has begun. "We have had a great deal of interest expressed by a variety of provider types and we are very pleased with the wonderful response. We are very excited about enrolling providers so we can start seeing the people who need services," said Bonnie Hope, Regional Resource Development Specialist/Program Manager (RRDS) for the waiver on Long Island.
Q: What makes the NHTD Waiver different from other Home and Community Based Services (HCBS)?
A: The NHTD Waiver respects participant choice. You may have heard of programs for people with disabilities which provide adult day care, pay for transportation to medical appointments, and provide packaged meals. The NHTD Waiver, however, provides these services and so much more, with a focus on community inclusion rather than isolation and segregation! Modeled after the New York State 1915(c) Traumatic Brain Injury Medicaid Waiver, the NHTD Waiver also provides non-traditional services, including guidance and peer mentoring in skills of daily life (such as budgeting or working in the kitchen), education about proper nutrition and unique dietary needs, counseling regarding including oneself in the community, home modifications (such as ramps or roll-in showers), support in daily life activities (which does not have to include having everything done for you), and other specialized services to help consumers make as smooth a transition to the community as possible. See the Glossary of Waiver Services below for details.
Q: I need some of the services provided for in the waiver. When should I call SILO?
A: Now! SILO can help you fill out a Medicaid application, which you will need before you can apply for the waiver. In addition, while you are waiting, or if you are not eligible for the waiver, SILO can hook you up with the right resources to get the services you need in other ways.
Q: I am a person with a disability. How do I obtain the services I need under the waiver?
A: First, you must be enrolled in Medicaid. If you need help filling out your application, feel free to call SILO. Medicaid-enrolled adults (18 years of age or older) with physical disabilities who qualify for nursing home placement are eligible for the waiver. SILO staff will inform each participant of the community-based programs available, and if it is decided that the NHTD Waiver is the best choice for the participant, he or she will move on to the next step: choosing a service coordinator. "We suggest that [participants] interview a few service coordinators to pick one they are comfortable with," said Bonnie Hope, RRDS for the waiver on Long Island. Service coordination is described in the Glossary of NHTD Waiver Services below.
Q: How does the waiver respect participant choice?
A: Waiver services are non-bundled. In other words, a participant decides which services he or she needs, and may choose to receive different services from several different individuals or agencies. Alternatively if the participant wants, he or she can get all their services from one agency. The choice is up to the participant.
Q: Could I provide services as an individual?
A: It depends. You must be incorporated; a "Doing Business As" certificate is not sufficient. You must also have the appropriate licensure. In addition, certain services, such as the Home and Community Support Services, require each provider of service to be a licensed home care agency.
Q: How could I, or my agency, provide services under the NHTD Waiver?
A: Check the glossary of terms and services below, and see if your work fits any of the descriptions. You will also need to fill out a simple application to become a Medicaid provider. Providing services under the NHTD Waiver is a great opportunity to become involved in changing the course of long term care on Long Island.
All of the terms below are descriptions of services provided under the NHTD Waiver. SILO is currently recruiting providers for all of these services, so give us a call today!
Assistive Technology: In the NHTD Waiver, this term generally refers to durable medical equipment such as wheelchairs and walkers, and communication-related devices such as communication boards.
Community integration counseling: Generally a short-term counseling service to help participants come to accept and cope with their disability in the community. This service may include family and friends if necessary. An example of a person who might need this service is someone who feels embarrassed when they use assistive devices in public.
Community transition services: Financial assistance that helps a participant to make the change from institutional living to the community. Such funds might be used to provide furnishings for a new apartment, for example.
Congregate and Home-Delivered Meals: Up to two meals per day, which can be either delivered to the home, or eaten in a community setting. Such meals are intended as a nutritional supplement and not as a full diet.
Environmental Modifications: Changes to the home that help a person cope with their disability. Such changes include grab bars or ramps.
Home and Community Support Services: Includes personal assistance services, such as bathing oneself or cleaning the home. If the consumer is able to do these things, but needs a little help or oversight, this would also be covered under Home and Community Support Services.
Home Visits by Medical Personnel: Doctors, nurse practitioners, or physician assistants may come into the home to assess how the consumer is doing on the waiver. The medical personnel can assess how well the participant’s needs are being met in the home environment, and by the caregiver. This service may also be provided if the consumer has difficulty traveling outside the home.
Independent Living Skills Training Services: training or guidance on daily living skills, including money and home management issues, instruction in communicating effectively with others, and guidance on completing tasks. If the consumer has cognitive difficulties, this training may need to include family members or caregivers.
Moving Assistance: Providing the means and funding to relocate to a new home or apartment from an institution or an otherwise less accessible place of residence. For example, a consumer might get help moving furniture.
Nutritional Counseling/Educational Services: Instruction on healthy eating, and any unique dietary requirements.
Peer Mentoring: Consumer receives one-on-one guidance and counseling from an experienced person with a disability.
Positive Behavioral Interventions and Supports: Counseling and guidance given to a consumer, or those close to him or her, that helps to stop behaviors that are troubling, and foster good behaviors. For example, someone who has regular outbursts might learn better ways to cope with anger.
Respiratory Therapy: Participants who have difficulty breathing can receive assistive equipment and other therapy in the home.
Respite Services: These services are especially helpful in cases where family members or friends provide needed supports to a participant, but they want to go away for a while. The participant can have a companion in the home to help them when family members have to leave for an extended outing or vacation.
Service Coordination: helps participants to make informed decisions about their support services under the waiver. Together, the service coordinator and participant formulate a plan for services, and the service coordinator informs the participant about the various individuals and organizations who provide the needed services.
Structured Day Program Services: Participants spend the day at a center with other people. What the participant will do there will depend on the program. Some programs offer training in employment-related skills. Some programs focus on participants’ medical needs outside the home, including rehabilitation programs. Still other programs are social and recreational, featuring games, arts and crafts, and other opportunities to interact with others.
Wellness Counseling Service: Participants learn about healthy lifestyle choices and keep up with their dietary and other health care regimens. People who might not otherwise need medical care use this service so that they can remain as healthy as possible.
There are incredible opportunities to become involved with this program. If you are a business or community organization. Sponsor an individual on their journey to independence. Contact Kathleen for exciting ways to help create positive change in the life of someone with a disability.
Represent your school district! SILO's Youth Leadership Council is a dynamic group of energetic Suffolk County high school students with disabilities, working toward real solutions to the barriers that stand in their way. Topics of interest include: advocating for your own educational future, improving attitudes toward disability, access issues, transportation, recreation, and more. "We need to change the way people see disabilities, and show them what we can do," says council member John C. The council’s advocacy efforts will forge a path in their schools and communities for future student leaders who have disabilities. If you want to stop whining and make change, give Kieran a call!