Volume 9, Issue 1
In January 2004, Governor Pataki's workgroup on health care restructuring in New York State issued a report formulating a vision that included a "long term care system that is accessible, coordinated and person-centered…[that] will support self determination; promote personal responsibility; provide services that meet consumer needs; provide quality care; and ensure accountability, efficiency and affordability." On October 19, 2004, the governor signed into law the Nursing Home Transition and Diversion (NHTD) bill, authorizing the Department of Health (DOH) to apply for a new Medicaid waiver for enhanced nursing home transition and diversion activities. The enacted legislation reflects the State's commitment to provide New Yorkers living with disabilities a wide array of supportive services in the least restrictive, most appropriate available setting.
The Suffolk Independent Living Organization (SILO) will act as Regional Resource Development Center (RRDC) which will administer the NHTD waiver on Long Island. This waiver, scheduled to launch by mid 2008, will help adults who are authorized by Medicaid for nursing home level care to obtain the same standard of care in the community, as opposed to care in a facility. Without this waiver, people in need of such care would have significantly less services. With the waiver, individuals can get services such as service coordination; assistive technology; community integration counseling; community transition services; congregate and home delivered meals; environmental modifications; home and community support services; home visits by medical personnel; independent living skills training; moving assistance; nursing assessment; nutritional counseling and education services; peer mentoring; positive behavioral interventions/supports; respiratory therapy and respite care services that will allow them to live in the community with independence. In its role as a disability education and advocacy agency, SILO will ensure that the program remains as consumer-centered as it was intended to be.
According to data provided by the State Education Department's, Vocational and Educational Services for Individuals with Disabilities (VESID), the average annual nursing home cost per person in 2002, a majority of which was funded by the Department of Health, was $78,110. By contrast, the annual cost for community integration was between about $14,000 and $65,000. Between 2001 and 2005, Independent Living Centers (ILCs) surveyed by VESID prevented 4,152 people from what they thought was imminent institutionalization, and diverted 791 people from existing institutional placement (including nursing homes). These efforts saved taxpayers about $350 million.
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.
Institutional care oftentimes strips people of their independence and robs them of the ability to make informed, person-centric choices for their care. At nursing homes and other institutions, staff decide the intimate details of residents' lives, often including when residents wake up, when and where they eat, how many showers they are allowed per week, and many other choices that most of us take for granted.
One woman, named Hope, visited us at SILO after ten years of being cooped up in a nursing home, having only been off facility grounds once for a medical appointment. "It's like a different world out here," she told us. That day, she saw the wonders of modern-day computer technology. She learned she can travel anywhere in Suffolk County using SCAT, and we learned she did not even know of the existence of DVDs.
"[Nursing home staff] doesn't like you to get up by yourself, and they take away your ambition to get up and do things," Hope explained. "It would give people a lot more incentive if they were allowed to do more. A lot of people like to get up and walk, but the [staff doesn't] take them."
Another man interviewed for this article, named Peaches, has been living at a skilled nursing facility, for seven years, of which he spent five and a half years in a coma. He is very grateful to those who kept him alive in the facility during those years, and aided him in his recovery. Now, however, he very much wants to leave the nursing home, and wants to go to school to study social work, where he feels he will be most useful. He says he would be different from the social workers at the nursing home where he lives. "Those social workers do absolutely nothing [except] expect you to depend on them. The favorite people on our side is the Ombudsmen," Peaches explains. (The ombudsmen are often volunteer advocates who help people in nursing homes to obtain needed services within the home.)
Peaches needs assistance with daily tasks such as taking a shower, but this does not mean he needs to be cared for. He feels frustrated when the staff try to care for him. The staff at the nursing home do not really want to help the residents, he says. "The people who can actually take care of themselves get special privileges. They might have aides who buy things for them."
Life in a nursing home is isolating at best. Hope tells us that she mostly watches TV and reads all day. According to Peaches, "The residents live in a world of five floors by themselves." Peaches tries to make friends where and when he can, and he says that when you live in a nursing home without friends, life is "like hell".
One important aspect of nursing home life is food and nutrition, but nursing home cooking can leave much to be desired. "You get better food at McDonalds than at the facility," Peaches says.
Another issue at nursing homes is the laundry. In a place where residents often have no family to turn to, and little money of their own, clothing is scarce. The staff are not always good at returning clothing to its proper owners either. Peaches even lost a quilt that had his name written right on it.
Advocacy in a nursing home can be difficult as well. "We have coalition meetings every month, but they always seem to tell me, ‘we'll look into it'," Peaches tells us.
The experiences of Hope and Peaches are far from unusual, especially in public nursing homes paid for by tax dollars. "These individuals need to know that there are options that allow them to direct their own lives and that Medicaid funds will allow them to take control of their own care; thus helping them to become more empowered and better able to make decisions relating to their own personal care, living situation or life direction," says Edward Ahern, SILO's Executive Director. "Moving from a nursing facility to living in the community will help to increase a person's self-worth, and make him or her feel more valued in their community," Ahern added.
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.
This independent film, shown at the New York Film Festival in November according to the Internet Movie Data Base, is another story about the freedom of a person with a disability. "The Diving Bell and the Butterfly" is a biography about French fashion magazine editor, Jean-Dominique Bauby, who had a stroke that left him unable to speak or move his body. The audience watches him regain his will to live, through camera shots that show his perspective, and scenes that explore his often comical inner thoughts and free, fantastical imagination. Viewers often see the world literally as Bauby would have seen it: sometimes through the view of his one single eye, and other times in the fully rich color of his inner world. The film, spoken in French with English subtitles, is about how he comes to write a novel, communicating his thoughts by blinking one eye. The book he wrote, also with the same name, is available from bookstores. The movie also explores Jean-Dominique Bauby's relationships with family, friends, and caregivers, as well as his fantasies and dreams of the past and present. Overall, the film is about the free mind of an artistic man, who lives his life with his disability.
I entered the "skilled nursing facility" of my oldest daughter's choice, after being told I would never be self-sufficient again. 18 years ago when I was in my 40s, I had a cerebral hemorrhage and lost my ability to walk, talk, remember or use my hands. I made a great recovery, and the only deficit I suffer with to this day is a total lack of balance called ataxia. Years later, breast cancer and the subsequent chemotherapy, further played havoc on my balance center and made it worse.
Before I landed in "the home", due to some horrible judgments I made with money, I lived on my daughter's property, in the carriage house, for four years. The apartment was a converted garage, which was made in to a two-room apartment. She financially took care of my expenses, together with my disability check from the government. I went about my life: working part-time every day, keeping the money for things I might need, like clothing or extra food. Yet one windy day in the Town of Port Jefferson, I fell and fractured my spine on the edge of a curb, as I rolled under a parked car. Someone helped me up and I drove home. I went to work the next day as my "work ethic" was strong and admirable. That evening, in my apartment, I fell again. That was the straw that broke the camel's back. My daughter took me to the hospital where they took all kinds of pictures and MRIs and found my spine to be fractured. They treated me at the hospital for a couple of days, and then into "a home" I went.
My daughter wasn't up to the challenge of helping me any longer; she had her own life to live and her home and business to attend to. She put my apartment up for rent. Since pets aren't allowed in "the home", my daughter tried to care for my two pups and eventually took them to Save-A-Pet where a wonderful woman took them both, promising to keep them together as long as they lived.
After two weeks of physical therapy at home number one, the physical therapist said I'd have to stay there for the rest of my life… that I'd never be "safe" to live alone again. I was dumb-founded. My whole life dissolved around me… I mourned the loss of my life as I knew it. I grieved the death of my independence, my joy and solitude that month.
Within a month, I began asking the aides if there was someplace I could go where the people were younger. I was only 62 and just not ready to sleep sitting up in a wheelchair like so many of the other patients. The aids directed me to another facility, not far from the one I was at already. The population of this newer facility was a mix of much younger people and older people as well. The average age is somewhere around 57. I've been there since March 1, 2007.
"The Home", as I refer to it, had an excellent physical therapy department. After being assessed by the therapists, I made up my mind to work as hard as I possibly could to make myself "safe". I went five days a week and made it my first priority to overcome my balance problems. I couldn't be "fixed" but was pronounced safe as long as I use a rollator (a walker with a seat to use in case I got tired) or a wheelchair.
Still, I continued to grieve. Right before the pups were adopted, I asked my oldest daughter to take a few rolls of film of them and have them put on CDs. As a computer graphic artist, I wanted to create a portrait of them to hang above my bed. I created a collage, pruning and primping them as I went along – cleaning and whitening their adorable faces. (They are both Malteses.) It took three weeks to produce, as I slowly groomed them and said goodbye to each of them, picture after picture. The results were wonderful, and at the end of three weeks, I was ready to say goodbye and let them go. Oh, I still mourn them, and even dream of them, but I know they're in a great home with a woman who only rescues older dogs to give them a good send-off. "It's about the dogs," I keep repeating to myself when I begin to crave their love. They are in the best place possible under the circumstances.
Coming through the grieving process for the loss of my life as I knew it, for the first time I set some goals for myself. This goal-setting process was new to me; in the past, I just enjoyed my life. Things happened because I wanted them to happen, but I never consciously set a single goal. College, teaching, marriage… all in due course. But now, I had three goals: 1) Get a job to occupy my brain and nourish my sensitivities, 2) get the heck out of The Home and 3) get a little puppy to sleep in the nooks and crannies of my neck each night.
Around that time I joined a new group that would advocate for residents in nursing homes. In this group, I met a wonderful woman there named Ruth Burger, who was head of the Ombudsman Program for Long Island. The group LOVED the logos and goals I created for them… and they loved my greatest asset--my mind.
Ruth (who I now call my Fairy God Mother), suggested I call Ed Ahern, and told me how SILO could help me achieve my goals. Unbeknownst to me, she called him also, and told him a little about me.
When I called Ed, he came to The Home and was knocking on my door in less than 40 minutes. "What in the hell are YOU doing here?" he asked. I just shook my head slowly from side to side… and told him I didn't belong there… not for a week, not for a lifetime. He invited me to visit SILO to meet his staff. "Come sit with us for lunch." I graciously accepted his invitation and made bus arrangements right after he left.
My first exploration was to find out what SILO was. SILO, which stands for "The Suffolk Independent Living Organization," is a 25-year-old non-profit organization run by staff and volunteers with disabilities. They know what's involved with living life as a person with a disability and they know what it takes to reach anyone's goals for independence. Their focus is on EMPOWERMENT, MENTORSHIP, KNOWLEDGE, and ADVOCACY. SILO isn't about achieving your goals for you, but the very knowledgeable people at SILO help you to acquire the tools you need to accomplish your own goals. All you need bring is your desire to better your life. Aside from playing a crucial role in the education of children with disabilities, they also work with businesses and agencies on disability-related issues having to do with employment, physical access, laws and regulations.
Goal number one: Accomplished. Now, as SILO's current volunteer graphic artist, I design flyers, logos, their newsletter – and other computer and desktop publishing projects. SILO referred me to a program through the Urban League, which tries to get mature workers back in the working community and pays them minimum wage. I come to SILO 20 hours a week and I enjoy EVERY SINGLE MINUTE of it!
One day, while we were sitting in the kitchen area, eating lunch, the employees who facilitate benefits, were talking about a New York State program called the Medicaid TBI Waiver. The program finds suitable housing, health aides, and benefits for people with traumatic brain injuries. I looked up and asked, "Would that particular waiver be applicable to me? I have permanent ataxia as a result of a vein blowing up in my brain."
The answer was "Yes!" After the staff at SILO gave me the name of the person in charge of the waiver in New York State, I called her and set up an appointment for the following week. We talked for three hours, and at the end of it, she approved me on the spot – something she told me she never does. Naturally, the waiver is fraught with paperwork and bureaucracy, but that's okay, because I've got that light at the end of my tunnel.
Goal Number Two: Getting out of the home, very soon!
As I continue to talk to my friends at the Ombudsmen's Office, I came to know the Ombudsman for the facility I'm currently living (if you call that living) at – horrible food, activities for the brain dead, $50 a month put in your account for your spending privilege, theft of your personal property, no locks on any doors, and very few in your corner.
The Ombudsman has done many favors for me this year and I offered to do a computer rendering of her dog for her, as she felt it would be her last dog because of her age and his.
"Oh, I'd love that! But I'd pay you the ‘going rate' for doing it…" "No!" I said. "You've done so much for me already! NO CHARGE!"
"I'll go you one better then… When you get that apartment, I'll get you that puppy for your neck! I work with rescue dogs. You name the breed and the sex, and I'll get you the puppy!"
Goal Number Three: A puppy! Yes! Hallelujah!
And that light at the end of your tunnel? It's ENTIRELY up to you. Turn that baby on, you hear?
Read the sequel to this article in the next edition of The Beacon.
NCD wants public input, and will be providing a live, toll-free comment line during select sections of the conference. For more information, check out www.ncd.gov. The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families.
Easter Seals Project ACTION is hosting a two-day training initiative offering teachers and trainers the basic tools needed to expand community transportation options. The 2008 series includes the following events: San Diego, CA (Feb. 21-22); New Orleans, LA (March 12-13); Washington, DC (June 2-3); Bloomington, IN (June 25-26); Eugene, OR (July 9-10). Individuals who use community transportation and advocates who support community change are encouraged to apply. Check out http://projectaction.easterseals.org or call (800) 659-6428.
The Eighth Annual Multiple Perspectives on Access, Inclusion & Disability conference is seeking undergraduate and graduate student research; performance, writing, visual art; or applied and community service projects for a poster session and reception on Tuesday April 22, 2008. Posters that relate to this year's conference themes "looking back and thinking ahead" will be given preference in the review process. The conference will feature diverse workshops and participants who are students, business professionals, and community members (including people with disabilities). For more information, check out http://ada.osu.edu or call 614-292-6207 (voice), or 614-688-8605 (TTY).
Hosted by the National Institute on Disability and Rehabilitation Research (NIDRR), this educational and networking event will offer participants comprehensive training provided by the premiere government agency representatives involved with the ADA. Presenters include the U.S. Dept of Justice, Equal Employment Opportunity Commission (EEOC), U.S. Access Board, U.S. Dept. of Labor and the U.S. Dept. of Education. There will also be an EXPO hall exhibiting the latest in assistive technology and services for people with disabilities. Topics include assistive technology, employment, advocacy strategies, education and more. For more information, visit www.adasymposium.org or email ada@missouri.edu
Each month we want to publicize issues that everyday Suffolk County residents with disabilities face in the community. We don't care what the topic is, so long as it relates to individuals with disabilities living their lives in the community. Submit your story via email at info@suffolkilc.org or call Krista and tell her about it at 631-880-7929.
SILO will be open until 8 P.M., every Thursday except holidays, starting February 7, 2008. We know that's it is important for this agency to be available to people beyond the confines of the business day. Feel free to stop by after school or work and chat with us about your independent living needs.
While SILO is open each weekday for consumers, Tuesdays and Thursdays feature a full menu of informative and interactive workshops, including film screenings and guest speakers, on topics such as life skills, employment, personal responsibility and independent living. Call SILO about our ongoing exciting weekly schedule of events.
SILO's offices are 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.
SILO is gearing up to administer the new Nursing Home Transition and Diversion Waiver grant, and we will be postponing our annual meeting until March 31, 2008 at the SILO Office. Join us to hear all about the great work SILO has done during the past year and our vision for the new year. This will be a great networking event. Sponsorship opportunities available. Call Kathleen for more information.
Help save a tree by signing up to receive the SILO Beacon and other important information by email. Email news@suffolkilc.org to get added to the list. You can also request that your paper version stop.
This exhibit, on display at the New York Public Library's Science, Industry and Business Library through January 31, is a unique effort to piece together the lives of former patients of the now abandoned Willard Psychiatric Center in the Finger Lakes region of New York. This exhibit is a precursor to an upcoming book entitled, The Lives They Left Behind: Suitcases From a State Hospital Attic. Both the book and the exhibit are creations of Darby Penney, a former employee at the New York State Office of Mental Health, and Dr. Peter Stastny, a psychiatrist and documentary filmmaker.
At the library exhibit, one will see a seven-foot-high display devoted to each of nine patients (last names withheld for confidentiality). On display are portraits, photos, and belongings retrieved from their abandoned suitcases, as well as their personal stories. The New York State Museum houses thousands more objects.
The book includes the life stories of over a dozen more patients, taken from interviews, medical records, and abandoned belongings. According to a recent interview with Ms. Penney in the New York Times, many of the 54,000 patients were committed because of some temporary crisis in their lives, and yet half of them died there. Many of the patients were people who had lost loved ones and were forced into poverty by the Depression.
Unfortunately, quality psychiatric knowledge and treatment was lacking, and patients' unpaid work kept the institution going. So-called treatment included electrical shocks, ice baths, and medication with severe and debilitating side effects. One man ended up at Willard after a single, isolated act of violence at a restaurant, and was given the diagnosis of paranoid schizophrenia. One woman ended up at Willard after losing two children before their first birthday, having a miscarriage, and being diagnosed with ovarian cancer. Yet the staff at the hospital described her as "content", according to the New York Times article.
The exhibit shows the grim side of the history of psychology in New York, and raises awareness of how harmful institutionalization can be. Library hours vary each day, so call (212) 592-7000 before you go.
This year's $1,000 award will recognize a student (high school or younger) with documented learning disabilities and/or ADHD "who has demonstrated initiative, talent and determination resulting in a notable accomplishment in any field-including art, science, math athletics, or community service." Honorable mentions will also be awarded. Check out www.smartkidswithld.org/award.html for more info.
SILO is seeking energetic young people with disabilities to form a youth leadership coalition to discuss issues and concerns that students have in their schools and communities. The coalition will identify and discuss barriers that stand in the way of the success and freedom of students with disabilities, and will create and carry out plans to address them. Possible topics include: advocating for your own educational future, improving attitudes toward disability, and understanding your IEP. We are looking for individuals interested in creating change. The group will meet monthly throughout the year, starting in January. If you're interested in becoming involved, contact Kieran @ SILO today for more information!