PATHways Newsletter of NAMI QUEENS/NASSAU and NAMI NASSAU AFFILIATES June/July 2011 The Zucker Hillside Hospital In this issue… Sloman Auditorium 76 Avenue & 266 Street Glen Oaks, NY 7:30 p.m. (Caring & Sharing at 6:00 P.M.) JUNE 15, 2011 Demystifying Medicaid: How to Get Benefits and Keep Them JOHN ALLEN, Special Assistant to the Commissioner, NYS Office of Mental Health John Allen is a well-known expert on Medicaid and regularly gives two-day trainings on the topic around the state. You won’t want to miss this very special opportunity to find out the latest about Medicaid and get all your questions answered about how to get and keep your benefits. JULY 20, 2011 HALI: Peer Run, Peer Driven, Peer Success EURAINA BARNES, Program Coordinator, & DENNIS FEUERSTEIN, PROS Intake Coordinator, for HALI Queens/Long Island Hear all about the latest happenings at Hands Across Long Island, which has now expanded into Queens. HALI is the largest and most successful peer-run multiservice mental health agency in NYS, serving over 3,500 clients. Hear all about its transition into a PROS (Personalized Recovery Oriented Services) service, bringing together rehabilitation, support, and clinical services into one plan that supports a person’s goals and hopes. From the President: Creating a New Openness About Mental Illness Page 3 Stigma in the ER Page 4 Long Island/Queens NAMIWalks 2011—A True Celebration Pages 5—7 In Our Own Voice NAMI Queens/Nassau Members Make Their Voice Heard Page 8 Ryan Medicaid Block Grant Would Adversely Affect Those with Disabilities Page 9 A Perfect Day: Beautiful Art, Delicious Food Page 10 All Federal Benefits to be Paid Electronically Page 11 Friendship Network Bowl Page 12 New-Onset Psychosis Link to Fake Pot Page 13 Support Group Listing Page 14 June/July 2011 NAMI Queens/Nassau PATHways NAMI QUEENS/NASSAU 1981 Marcus Ave., Suite C117 Lake Success, NY 11042 516-326-0797 or 718-347-7284 Fax 516-437-5785 Email: [email protected] or [email protected] Page NAMI Queens/Nassau Donation & Membership Form Yes! I want to join NAMI Queens/Nassau to receive useful information and to help improve conditions for those with mental illness. I will receive newsletters from NAMI Queens/Nassau, NAMI, and NAMI-NYS. MEMBERSHIP DUES: $40 Individual $50 Family $60 Professional $5 Consumer (A portion of the dues goes to NAMI and NAMI-NYS) Website: www.namiqn.org ADDITIONAL DONATION: Officers Janet Susin President Al Dunlop 1st Vice President Larry Kenny 2nd Vice President Ted Vecchio Treasurer Louise Slater Secretary Board Members Sondra Cohen, Richard DeMartino, Charlotte Driver, Arnold Gould, Lorraine Kaplan, Linda Manzo, S. Raghavendran, Estelle Reichman, Elizabeth Reilly, Janet Reilly, Neil Slater, Ruth Wolosoff Honorary Board Members Pearl & Israel Lindenbaum Newsletter Staff Janet Susin Editor Maureen Josel Typing, Layout & Design Opinions expressed in PATHways do not necessarily reflect the views of NAMI Queens/Nassau or any affiliated organization, and we cannot attest to their accuracy. NAMI Quee ns/Na ssau , an affiliate of the National Alliance on Mentally Illness and NAMI/ NYS, gratefully acknowledges the continuing support of the FLB Foundation TOTAL: Name Address City State Zip Phone Number E-Mail Address DONATION IN MEMORY OR HONOR OF (please indicate by circling) Name of honoree or decedent: Name of person to be notified of your gift: Address City State Zip Please send form and check made payable to NAMI Queens/Nassau, 1981 Marcus Avenue, Suite C117, Lake Success, NY 11042. Nassau County NAMI Affiliates Meeting Info Affiliate Location Date/Time Contact NAMI LAMP/ SW Nassau Peninsula Counseling Center 50 W. Hawthorne Ave, Room 211 Valley Stream 2nd Wed. of Month 6:30 p.m. Support 7:30—9:00 p.m. Sydelle Wolfsohn (516) 623-7871 NAMI Long Island Regional Council, Inc. North Shore University Hospital 888 Old Country Rd. Plainview NAMI North Shore North Shore Hospital Building 400, Rm. 74 Community Drive 3rd Thursdays 7:00 p.m. Support 7:30 p.m. Business 8:00 p.m. Speaker 3rd Tuesday 7:30 p.m. Barbara Roth (516) 694-7327 Al Dunlop (516) 671-3957 South Oaks NAMI South Oaks Hospital 400 Sunrise Highway Amityville 4th Thursdays 7:00—9:00 p.m. Una Ward (631) 264-4000 Ext. 1-2004 NAMI Nassau University Medical Center 2201 Hempstead Tpke. East Meadow 2nd Tuesday 7:00 p.m. Elsa Perez, CSW (516) 572-6888 2 June/July 2011 NAMI Queens/Nassau PATHways Page 3 From the President Creating a New Openness About Mental Illness By JANET SUSIN, President No question that this is a time of high anxiety. The unemployment rate is high, gas prices are soaring and the political rhetoric is toxic. What’s more, everyone seems determined to cut the deficit, and many of the plans for deficit reduction would affect the most vulnerable populations. That’s us! Cuts to Medicaid threatened Everyone, of course, has their eyes on Medicaid, which is seen by the Right as a bloated entitlement program for the poor and the disabled that needs to be brought under control. Never mind that without it many of our loved ones would be unable to get treatment and services. Right now the program is needs-based, but if the deficit hawks have their way it will become a block grant, a finite pot of money given to each state to spend as they see fit. What would ensue would be a daunting struggle to get or retain benefits, and in the end many who need it would be left out in the cold. Even if the move to block grant Medicaid is beaten back, we face an uncertain future as the state moves ahead with its plans for Medicaid Redesign. We are about to enter into an era of managed care and where that leads us no one can say with any certainty. It may be that there will be greater accountability with more people likely to get appropriate care and services. It may even be that it will be easier for our loved ones to access integrated medical care and that psychiatrists and doctors will actually talk to one another. On the other hand, it is just as likely that we’ll be entering an era of severely limited services and access to medication. Past experience with managed care has not been good. With for-profit managed mental health, far too many of our mental health dollars have ended up in the pockets of administrators and bean counters, and providers experienced in working with our population have been hard to come by. And while we’re in the worrying mode, although PROS, which is paid for through the Medicaid rehabilitation code, seems to be off to a good start, what will happen if the Medicaid spigot is turned off and funding for this kind of program is in jeopardy. What then? A star and students lead the way At the same time there are bright spots. There seems to be a new openness about mental illness. When a star of Catherine Zeta-Jones’ magnitude announces to the world that she’s going into a psychiatric hospital for a ―touch up‖ we know we’re making progress. Why, it was even given a name, treatment for bipolar 2, apparently a milder former of bipolar with a significant depressive component. This openness is echoed in the way kids in school are becoming not only comfortable about talking about mental illness, but leading efforts to combat stigma. Under the inspirational leadership of their social studies teacher at Weber Middle School, Linda Manzo, they’ve taken on stigmabusting as a cause. For the second year in a row these students have been in the vanguard in raising funds for our Jones Beach NAMI Walk, and signs of their advocacy are all over the school. Banners with a cartoon brain, Tootsie Pop sales to raise funds, passionate letters written to public figures, bracelets that say ―We’re loud and proud‖ are making their presence felt everywhere at Weber. And at a neighboring school in Manhasset, students are stigmabusting in their own way. They started Neil’s Wheels, an ongoing community service project named in honor of a former Manhasset high school lacrosse star, Neil Barber, who has spent the last ten years of his life hospitalized at Pilgrim state with schizophrenia. Every five weeks middle schoolers in Bob Rules’ social studies classes bring in cans of food to feed the homeless, which are distributed to food pantries and shelters by Harry Chapin’s Long Island Cares. Students believe this is an appropriate tribute because they know that when Neil was at his sickest he was homeless and went to places like this to get food. Although teachers have played a major role in getting these two efforts off the ground, an individual high school student in Fulton County is raising awareness all by herself. Ashelee McDuffey, a beauty pageant contestant who has made mental illness her platform, has written and performed a song to encourage compassion and understanding for people with mental illness. Her music video is posted on You Tube, and she teaches mental illness education classes on Wellness Day at the FondaFultonville High School and to health classes in the same school. She is truly amazing! Joe Pantoliano, featured guest celebrity for our NAMI Walk This year, character actor Joe Pantoliano, who won an Emmy for his portrayal of Ralph Cifaretto in The Sopranos and is featured in The Matrix, Momento, and Risky Business, was our NAMIWalks guest celebrity. Joe struggles with depression and has started his own organization to help create a new openness about mental illness called No Kidding Me Too, www.nkme2.org. If you go to his website you’ll see he’s recruited other actors to help in his efforts to move mental illness into the mainstream, including Harrison Ford, who is featured in a website PSA saying he wants to make talking about mental illness ―cool, and sexy, and trendy.‖ I agree. Breast cancer advocates have made their cause the fashionable thing to support. Their pink ribbons and promotions are everywhere. Autism too has become a fashionable cause, and parents don’t seem to be ashamed to talk about their children’s struggles. Isn’t it time for us to be open about our cause as well? Hats off to all these wonderful young people and Joey Pants and his supporters who are leading the way. Linda Manzo’s amazing activist students have it right. They say they’re speaking out ―Loud and Proud‖ about mental illness. We should be doing that too. June/July 2011 NAMI Queens/Nassau PATHways Page 4 Stigma in the Emergency Room By NORA WEINERTH Assistant Commissioner Marsik, Mr. Pinnaduwa, good afternoon. I am Nora Weinerth, and I am here to draw your attention to stigma in the emergency room and to propose a solution. I am here as an independent advocate. The problem: Stigma in the emergency room A NAMI member, Ruth Wolosoff, described an incident in the newsletter of NAMI Queens/Nassau. The incident took place in the ER of a highly regarded hospital on Long Island. Ms. Wolosoff wrote: As the doctors worked on my husband, who was very ill and in terrible pain, I was frantically dialing my cell phone, trying to reach family members and friends who might be able to help. A young man, sitting on a stretcher with a medical staff member standing near him, beseeched me to call someone for him on my phone, as he did not have one. Before I had a chance to answer him, the person standing next to him, who turned out to be a medical intern, told me not to pay any attention to the patient because he was mentally ill. What can we do to keep such a scenario from happening again? The solution: A stigmabusting educational mini-campaign To answer Ms. Wolosoff’s question, ―What can we do to keep such a scenario from happening again?‖ I propose a simple, practically no-cost approach to lessening stigma in the emergency room: a stigmabusting mini-campaign aimed at emergency room personnel, from the head of the department to doctors and nurses and the individuals who empty the waste baskets. A training program, designed according to guidelines from DOHMH, should deliver fundamental information about psychiatric illnesses and substance use disorders. The training should have a strong bias in favor of responding to people with a psychiatric condition or substance use disorder with the same consideration and respect that are accorded to all others with a medical emergency. The trainers can be drawn, at no added cost, from the hospitals’ own departments of psychiatry. Emergency departments and DOHMH could partner to design and deliver the training. With DOHMH lending its weight and prestige to the enterprise, the education is perhaps likelier for the antistigma mini-campaign to be implemented. I envision a training program, beginning as soon as possible, consisting of a series of symposia, round tables, and other educational events, held in hospitals with emergency departments. Educational events such as talks or round tables could be planned at practically no cost to the city or to the hospitals involved. Although there would be almost no financial cost to DOHMH, your leadership in the creation of the anti-stigma campaign could yield real dividends—dividends that would benefit all users of emergency departments, not solely people with a psychiatric diagnosis or a substance use condition. Consider these benefits, for example: The benefits: Improved standards of emergency care for all. High-quality interactions in the ER. Substandard behavior towards a few contributes to the erosion of standards of acceptable behavior generally. Higherquality emergency room interactions support the goals of ER standards of emergency medical care for all. Unacceptable conduct towards some people can debase the quality of emergency care for all others. Training aimed at encouraging correct behavior towards people with psychiatric vulnerability, based on learning about the conditions themselves and the people who live with them, will foster a culture of respect for others as well. A culture of respect will help improve the chances that emergency room standards of medical care will be scrupulously applied to individuals from other vulnerable groups, such as elderly people, immigrants, poor people, and others who are socially devalued. A competitive edge in the ER. At a time when hospitals compete for patients by boasting short emergency room waiting periods (advertised on electronic billboards on highways), word-of- mouth reports about considerate, respectful treatment in the emergency room could give a competitive edge to a hospital known for the superior quality of its emergency room culture. Refusing an emergency room user the privilege of a phone call, based on his having a psychiatric condition, might at first appear to be trivial. It is not. If refused a simple common courtesy, can a person with a psychiatric illness who goes to an emergency room because of chest pains, or symptoms of appendicitis, or a fracture, expect to receive decent medical treatment? What other ―privileges‖ could he or she be refused because of his or her psychiatric status? An EKG? A unit of insulin? Anything else? These are the questions that arise in us, as families, friends, and advocates, when we fear that a psychiatric diagnosis could compromise the quality of medical care received in an emergency room. Veterans Hotline It takes the courage and strength of a warrior to ask for help… If you or someone you know is in an emotional crisis call 1-800-173-8255 (TALK) Press 1 for Veterans www.suicidepreventionlifeline.org June/July 2011 NAMI Queens/Nassau PATHways Page 5 Long Island/Queens NAMIWalks 2011 a True Celebration By JANET SUSIN We did it!!! Thank you, thank you, to all you true believers who came out in force for NAMIWalks 2011 despite the prediction of not one, but two thunderstorms. Yes, the rain gods smiled on us once again and we got through the day with barely a drizzle. It felt like a party! So many people laughing and smiling and having a great time grooving to the music, taking pictures with Joey P., waving to Dora the Explorer, snacking on the donated goodies, and all in all enjoying one another’s company while we waited for the Walk to start. DRUM ROLL, PLEASE!! As I write this article a day after the walk we’re just $7,946 short of this year’s goal of $250,000. So we are well on track to make our goal!! Thanks to every donor large and small who got us this far. You’re the best! Last year we brought in almost $20,000 between Walk day and the day we officially closed our books, two months after the Walk. So it’s not too late to make a donation and get us to the finish line! A special thank you to Chrissy Thornton, NAMIWalks regional manager, who did so much to keep us all working hard, motivated, and excited! And thanks to NAMI for getting us the Sunrise Premium incentive vacation program. It really helped keep those donations coming. This year we had 50 teams raising $1,000 or more, and 18 who raised $2500 or more. Awesome! We’ll be giving you final figures about our top teams in the next newsletter when all the fundraising is over, but in the meantime I’d like to acknowledge some of our special fundraisers: Hats off to NAMI Queens/Nassau board members - Janet Reilly, a new board member, was responsible for getting us a $25,000 sponsorship from the Ann Allen Cetrino Family Fund, and her team raised well over $10,000. Other top board fundraisers include Angela Babaev, Lorraine Kaplan, Linda Manzo, Janet Susin, Ruth Wolosoff, Neil Slater and Ted Vecchio. The Breaking the Silence super team alone raised approximately $19,500. Bravo to Zucker Hillside’s Super Team – Great job! They set a goal of $20,000 and went way beyond, turning in $25,328 on Walk day. Fabulous! And those Zucker Hillside T-shirts were true works of art. Congratulations to Jacqueline Wagner for designing the T-shirt that won News 12 team was at the Walk all morning shooting Walk happenings and interviewing participants. Young people took the lead in stigmabusting. Kudos to Linda Manzo’s incredible middle schoolers who raised more than $8,000 and charmed us all with their enthusiasm, their banner with the cartoon brain on it, and their slogan, Loud and Proud. NAMI-Huntington reports that there was anti-stigma student activity at the Harborfields High School in Greenlawn in Suffolk County too. One student alone, Sean Quinn, raised $500 in his school. the NAMIWalks T-shirt contest. The sunburst design with the slogan A brighter future for mental illness was truly inspirational. Kudos to NAMI Westchester – They joined us for the first time this year and did a great job of fundraising and getting sponsors. Lots of checks that were turned in that day are still to be counted, but just counting sponsorships and online contributions they brought in $14,114. Way to go, Westchester team captains Fran Belasco, Stamatia Pappas, and Randi Silverman, and thank you!! NAMIWalks Heroes – 18 teams were honored at the Walk for raising over $2,500. Many raised significantly more. In addition to those listed above, they include Gloria Cohen, Jessica Handy, Al Landau, Kristie Lowenstein, Tara Mandel, Lynne McGrail, Kaleigh Timmerman, Carol Ann Viccora, and John Wagner. WALK HIGHLIGHTS Two video teams captured Walk sights and sounds. This year NAMI national chose our site to be featured in the 2012 NAMIWalks video. Next year it will go out to the 80 Walk sites around the country. We will also be featured on Cablevision’s Neighborhood Journal. A Congratulations to our newest Family to Family class for their great banner, T-shirts and slogan. Make America Care, NAMIWalks 2011 was emblazoned on their handsome banner, and they had T-shirts to match. On the back, along with the MAC slogan, was a picture of Congress with little footsteps leading up to it along with the names of various mental illnesses. What a fabulous graphic! 500 pounds of food!! – Thanks to all of you who remembered to bring a can of food to the Walk in honor of Neil Barber, a true NAMIWalks hero and the inspiration for Neil’s Wheels. Neilswheelsny.com, Long Island Cares, tells us that they weighed our contributions and the weight translates into approximately 1,000–2,000 cans of food to help feed those in need, many of whom are (Continued on page 6) June/July 2011 NAMI Queens/Nassau PATHways Page 6 Neil’s Wheels Collects Food for Homeless at Walk Susin and I have received to speak at many new By GREG BARBER schools, NAMI is making a huge difference. NAMI Queens/Nassau does great work in I thank NAMI for promoting Neil’s Wheels educating people and raising awareness about NY. We were able to raise 500 pounds of non mental illness in the community. perishable food, which my new partner in I especially look forward to partnering with distribution, Long Island Cares, was able to NAMI as we go to the middle schools and high distribute to their food pantries. They will schools to expand our mental illness outreach promote our efforts, and it is a known fact that to our next generations while we embrace many of the hungry families have mental illness, mental illness awareness. as one in three homeless people are also I was really impressed with the Port suffering from mental illness. I was able to Washington school for raising so much money create an alliance with them because of the and for making such great signs, and for their NAMI Walk, and Neil’s Wheels NY has many Neil Barber with father, Greg enthusiasm. I will be speaking at their school in new events that they are helping me with. the fall. If we all work as one large team, we can make a huge Coupled with my efforts with Manhasset, St. Peter’s, Rocky difference. Point, and Canterbury Prep, and the numerous invitations Janet Long Island/Queens NAMIWalk... (Continued from page 5) homeless and have a mental illness. What a great Zumba warm-up! Gloria Keyloun, our IOOV coordinator, had everyone bouncing enthusiastically to a Latin beat, getting us ready for the NAMIWalk. If you want to see what we looked like go to http://youtu.be/ Wd5RoWCFXdE. Gloria will be teaching Zumba classes for NAMI throughout the summer. For more information contact Gloria at [email protected] or go to www.zumba.com and click on 'find instructor,‖ where her bio and classes are listed. Dora the Explorer paid us a visit Michelle Romano volunteered her time to come to the Walk. She entertains at kids’ parties. Thank you, Michelle! http://www.yourlocalkids.com/book/kluelesskunection.htm I paid for parking – This year we finally found a way to make people aware that we have to pay $8 per car at Jones Beach, and if drivers don’t pay, NAMI Queens/Nassau has to pick up the tab. They count the cars! The I paid for parking stickers really seemed to do the trick. Thank you for paying the parking fee so that we don’t have to shoulder that extra expense. One great band, but the other canceled – Let’s hear it for Big Daddy and the Bulldogs! They volunteered their time again this year and they were great. Breakaway canceled at the last minute because of an injury, so we didn’t have an afternoon band. Sorry about that! Lots of food for everyone – Friendly’s served free hot dogs and sodas. Snacks were donated by Whole Foods-Manhasset; TargetWestbury; Pat’s Farm-N. Merrick; Shoprite-Uniondale; Stop & Shop-N. Bellmore; Waldbaums-East MeadowHicksville; Walgreens-East Meadow; Fairway, Plainview; BJs-Freeport. Thanks to Gloria Cohen for getting many of these. Overcoming adversity – We certainly had our share of it this year. Not only did we have the threat of rain, which made it difficult to put up signs and leave them overnight, but we were also told that Walks who have set up the day before have been vandalized overnight. It was even suggested that we hire a guard! Our choice was to keep everything locked up on the beach side and bring things over to the parking lot side in the morning. Leaving a lot to the morning puts additional pressure on all of us. So kudos to our intrepid Walk day behind-the-scenes team: Al Dunlop, Larry Kenny, Cheryl Fischetti, Eugene Volkov, Jessyca Berkman, Gloria Cohen, Ted Vecchio, Richard De Martino from State Bank of L.I., Amy Fleischer, Annie Nicosia, Maureen Josel, Alice Cohen, Nancy Schlessel, Ruth Proller, Linda Ronn, Vic Ronn, Myron Susin, Barbara Roth, and the fabulous Meadowbrook Women’s Initiative for doing such a good job under difficult circumstances. June/July 2011 NAMI Queens/Nassau PATHways Page 7 June/July 2011 NAMI Queens/Nassau PATHways Page 8 In Our Own Voice By ROSIE RINSLER ness. One of the other supports is my talk therapy. Working with My name is Rosie Rinsler. I am a member of NAMI. On my therapist has enhanced the quality of my life one hundred March 25th I spent the day with my consumer friends Greta and percent. Gloria at an elementary school in Rockaway speaking to families I also work with a life coach who works of people with mental illness. We spoke as with me on accomplishing goals, including presenters for NAMI’s In Our Own Voice getting my artwork ―out there.‖ program (IOOV is made possible by a Another joy in my life is my lifetime grant from Eli Lilly and Company). We partner, Josh. We have been together 14 spoke about our mental illnesses, which years, and we are extremely happy and good deals with Dark Days, Acceptance, Treatto each other. He is my rock and my mentor, ment, Coping Skills, and Successes, Hopes and truly my best friend. He is my soul mate and Dreams. and makes my life the happiest it can be. The response was amazing. Greta, GloMy family and friends are keys to my ria and I spoke about what we have been happiness. The support, love and acceptance through, and we showed a film about menby my family and friends are a blessing. tal illness. We answered questions, and the people we spoke to said we inspired them Alice Cohen’s Friendship Network has to try to get help for their family members. Gloria Keyloun, IOOV coordinator, with parents at also been a lifesaver for me. The socializaRockaway School. tion and schmooze groups which meet once I must say, one of my dreams is to be a a month has introduced me to so many new friends, and for this I spokesperson for mental health issues. I took a two-day seminar am extremely grateful! in December 2010 to learn to be a better speaker, and it is a joy to me to speak as a success story—recovering from mental illI love to speak in front of an audience. I have no shame or ness and, I must add, a successful artist. I have a website and I embarrassment of what I have been through, and I must share sell greeting cards and prints to share my love of art. My website that mental illness is not a dead end street—there is always hope! is www.rosiesoriginalcards.com. My life is a joy because my dreams are coming true. I am no One of the topics I shared was the importance of medication: longer suffering—I went from illness to wellness! how it is a lifesaver and one of the keys to my health and happi- NAMI Queens/Nassau Members Make Their Voice Heard in the Community Ceceile Green, NAMI Basics teacher, spoke to Queens College students in the American Association of Family and Consumer Sciences Club about mental illness. Ceceile also gave a well-received workshop on bipolar disorder at the Moving Forward in Children’s Mental Health conference at the Melville Marriott. The conference was sponsored jointly by the children’s division of the Office of Mental Health and Families Together of NYS. Greta Fajaram & Rosie Rinsler gave two inspirational In Our Own Voice presentations, one to a parents’ group at a middle school in Rockaway and the other to consumers at the Association for Rehabilitative Case Management and Housing, Inc. in Kew Gardens. Thanks to Gloria Keyloun, In Our Own Voice coordinator, for making this happen. Lorraine Kaplan was a featured speaker at a Speaking Up and Speaking Out conference sponsored by Concern for Independent Living in Riverhead. Lorraine also shared her moving personal story with the Meadowbrook Women’s Initiative as part of a Walk day training. Janet Susin gave a presentation in Albany on Breaking the Silence to children’s mental health advocates and providers at a NAMI-NYS sponsored event, Reaching All Children: Exploring Mental Health and Awareness. Janet also participated in an advisory panel on curriculum sponsored by Nassau Community College’s School of Nursing and spoke to psychologists in training at Zucker Hillside, providing valuable insight on the family perspective on mental illness. June/July 2011 NAMI Queens/Nassau PATHways Page 9 Ryan Medicaid Block Grant Would Harm People with Disabilities NYAPRS Note: The following pieces come courtesy of Medicaid Matters’ Lara Kassell. RYAN MEDICAID BLOCK GRANT WOULD CAUSE SEVERE REDUCTIONS IN HEALTH CARE AND LONG-TERM CARE FOR SENIORS, PEOPLE WITH DISABILITIES, AND CHILDREN By January Angeles Center on Budget and Policy Priorities, May 3, 2011 House Budget Committee Chairman Paul Ryan’s budget plan, which the House passed on April 15, would dramatically restructure Medicaid by converting it to a block grant and cutting the program’s funding sharply. According to the Congressional Budget Office, the Ryan budget would reduce federal funding by 35 percent in 2022 and by 49 percent in 2030, compared to what the funding would otherwise be. This would almost certainly affect tens of millions of low-income Medicaid beneficiaries adversely over time. To compensate for the steep reductions in federal funding, states would either have to contribute far more in their own funds, or, as is much more likely, exercise the new flexibility under the block grant to cap enrollment, substantially scale back eligibility, and curtail benefits for seniors, people with disabilities, children, and other low-income Americans who rely on Medicaid for their health care coverage. To cite just a few examples of how different groups could be affected: Seniors: An overwhelming majority of Medicare beneficiaries who live in nursing homes rely on Medicaid for their nursing home coverage. Because the Ryan plan would require such deep cuts in federal Medicaid funding, it would inevitably result in less coverage for nursing home residents and shift more of the cost of nursing home care to elderly beneficiaries and their families. A sharp reduction in the quality of nursing home care would be virtually inevitable, due to the large reduction that would occur in the resources made avail- able to pay for such care. People with disabilities: These individuals constitute 15 percent of Medicaid beneficiaries but account for 42 percent of all Medicaid expenditures, mostly because of their extensive health and long-term care needs. Capping federal Medicaid funding would place significant financial pressure on states to scale back eligibility and coverage for this high-cost population, many of whom would be unable to obtain coverage elsewhere because of their medical conditions. Children: Currently, state Medicaid programs must provide children with health care services and treatments they need for their healthy development through the Early Periodic Screening, Diagnostic and Treatment (EPSDT) aspect of Medicaid, which provides regular preventive care for children and all follow-up diagnostic and treatment services that children are found to need. A block grant would likely permit states to drop EPSDT coverage, meaning that children, particularly those with special health care needs, would not be able to access some care that medical professionals find they need (because Medicaid would no longer cover certain health services and treatments for children, and their parents wouldn’t be able to afford to pay for that care on their own). Working parents and pregnant women: Many state Medicaid programs already have extremely restrictive eligibility criteria for parents. In the typical state, working parents are ineligible for Medicaid if their income exceeds 64 percent of the poverty line (or $14,304 a year for a family of four), and unemployed parents are ineligible if their income exceeds 37 percent of the poverty line ($8,270 a year for a family of four). Under a block grant, states could cut these already low eligibility levels even further, cap enrollment, and/or require low-income parents to pay more for health services. States could do the same for low-income pregnant women who rely on Medicaid for their prenatal care, resulting in them forgoing services that are critical to ensuring a healthy pregnancy. THE RYAN PLAN FOR MEDICAID New York Times Editorial, April 30, 2011 With Washington looking for ways to rein in costly entitlement programs and state governments struggling to balance budgets, conservatives have revived an old nostrum: turning Medicaid into a block grant program. The desire for fiscal relief is understandable. Medicaid insures low-income people and in these tough economic times, enrollment and costs — for the federal government and state governments — have swelled. Representative Paul Ryan, and the House Republicans, are now proposing to ease Washington’s strain by capping federal contributions. Like his proposal for Medicare, that would only shift the burden — this time onto both state governments and beneficiaries. Still, some governors may be tempted. His plan promises them greater flexibility to manage their programs — and achieve greater efficiency and save money. That may sound good, but the truth is, no foreseeable efficiencies will compensate for the big loss of federal contribution. Mr. Ryan also wants to repeal the health care reform law and its requirement that states expand their Medicaid rolls starting in 2014. Once again Washington would pay the vast bulk of the added cost, so states would be turning down a very good deal to save a lesser amount of money. Here’s how Medicaid currently works: Washington sets minimum requirements for who can enroll and what services must be covered, and pays half of the bill in the richest states and three-quarters of the bill in the poorest state. If people are poor enough to qualify and a medical service recommended by their doctors is covered, the state and federal governments will pick up the tab, with minimal co-payments by the beneficiaries. That is a big plus for enrollees’ health, and a healthy population is good for everyone. But the costs are undeniably high. Enter the House Republicans’ budget (Continued on page 10) June/July 2011 NAMI Queens/Nassau PATHways Page 10 MoMA and Hamburger Heaven By STEPHEN C. The date was Tuesday, April 12, 2011 and I took the LIRR from home to Penn Station. From there I took a taxi to MoMA (Museum of Modern Art) at 53rd Street. I arrived early and waited in the lobby. The first person to arrive was Barbara, and soon the other members of our group arrived. We had a great docent named Kirsten for our tour, whom I thought was very knowledgeable about all the fine works of art. We started by observing Vincent Van Gogh’s famous painting The Starry Night. The painting was painted in 1889 and has a beautiful rolling blue sky with a yellow crescent moon outlined in yellow. A small town before sunrise with the morning star stands out amongst the huge sky. The painting gave me a feeling of how small I am if I lived in that village compared to the massive sky. The next was titled Evening at Honfleur, dated 1886, by Georges-Pierre Seurat, who lived in France. Honfleur is located in northwestern France and the region is known for turbulent seas and rugged shorelines. The evening looks hushed and still, the vast sky and tranquil sea evokes a pastel sky and a soothing effect. There is a sense of clouds that echo the breakwaters on the beach. Seurat developed a technique known as pointillism. The form is small dots of light pastel, pure color. The painting evokes a calming effect. The next was by artist Marc Chagall entitled I and the Village. The figure on the left of the artwork is a large head of a cow looking directly at a huge green head representing a peasant. There is a small green tree which stands at the bottom and represents a tree of life. I noticed a moon’s crescent that was in red and reminded me of the symbol for the flag of Turkey. The style of the artwork is cubism. The next artist we came across was Henri Matisse, a French artist from the early 20th century. His painting titled The Dance conveyed to me a lot of joy, energy and daring. The figures are simple and abstract. There’s a huge blue sky and the green represents the earth. The strength of the bodies is emphasized. They look like they are light on their feet and gave me a feeling of being light-footed. We saw another Matisse painting titled The Red Studio painted in 1911. It’s a fun picture, not to be taken seriously. My favorite artists are Pablo Picasso and Henri Toulouse Lautrec. The Picasso we saw is Three Musicians and has a whimsical feel. The other Picasso was Girl Before a Mirror, painted in 1932, of Picasso’s young mistress and shows a frontal view of her face which reminded me of a Queen of Hearts. It’s a somber picture which repre- sents her transition from an innocent girl to a worldly woman. The last Picasso we saw, painted in 1907, was Les Demoiselles D’Avignon and is one of the most important works in modern art. The artwork marks a radical break from traditional composition and perspective. My other favorite artist is Claude Monet, a Frenchman that painted Water Lilies in 1920. I remember studying him at Queensborough Community College and own a book on impressionist art. The size of this painting is impressive, with a lot of light and color. At the end of the tour we received a free admission card to return to the museum in the future. I look forward to using my card and viewing all the beautiful works of art again. Most of the members walked down the street to eat at Barbara’s favorite restaurant, Hamburger Heaven. I ordered a chicken salad sandwich with coleslaw and found it to be delicious. Everyone enjoyed the restaurant. At the end of the meal we said goodbye and I returned to Penn Station for the train ride home. I enjoyed myself at the museum and restaurant; it was a good time for all of us! The Ryan Plan for Medicaid... (Continued from page 9) proposal. Instead of a commitment to insure as many people as meet the criteria, it would substitute a set amount per state. Starting in 2013, the grant would probably equal what the state would have received anyway through federal matching funds, although that is not spelled out. After that, the block grant would rise each year only at the national rate of inflation, with adjustments for population growth. There are several problems with that, starting with that inflation-pegged rate of growth, which could not possibly keep pace with the rising cost of medical care. The Congressional Budget Office estimates that federal payments would be 35 percent lower in 2022 than currently projected and 49 percent lower in 2030. To make up the difference, states would probably have to cut payments to doctors, hospitals or nursing homes; curtail eligibility; reduce benefits; or increase their own payments for Medicaid. The problems do not end there. If a bad economy led to a sharp jump in unemployment, a state’s grant would remain the same. Nor would the block grant grow fast enough to accommo- date expensive advances in medicine, rising demand for longterm care, or unexpected health care needs in the wake of epidemics or natural disasters. This would put an ever-tightening squeeze on states, forcing them to drop enrollees, cut services or pump up their own contributions. This is not the way to go. The real problem is not Medicaid. Contrary to most perceptions, it is a relatively efficient program — with low administrative costs, a high reliance on managed care and much lower payments to providers than other public and private insurance. The real problem is soaring medical costs. The Ryan plan does little to address that. The health care law, which Republicans have vowed to repeal, seeks to reform the entire system to deliver quality care at lower cost. To encourage that process, President Obama recently proposed a simplified matching rate for Medicaid, which would reward states for efficiencies and automatically increase federal payments if a recession drives up enrollments and state costs. The president’s approach is better for low-income Americans and for state budgets as well. June/July 2011 NAMI Queens/Nassau PATHways Page 11 All Federal Benefits Will Be Paid Electronically NAMI Queens/Nassau gratefully acknowledges the following donations: Source: U.S. Department of the Treasury, Financial Management Service Betty Blond & Louis Chessin in memory of Marion Seltzer The U.S. Department of the Treasury now requires all federal benefit and nontax payments to be paid electronically. People applying for Social Security, disability or other federal benefits will receive their payments electronically starting with their first payment. People currently receiving federal benefit checks will need to switch to an electronic payment option by March 1, 2013. Those who do not choose an electronic payment option at the time they apply for federal benefits or those who do not switch by the deadline will receive their benefit payments via the Direct Express® Debit MasterCard® card, so they will not experience any interruption in payment. If you are already receiving benefit payments electronically you do not need to take action. You will continue to receive your payment as usual on the payment day. Having federal benefits paid electronically by direct deposit into the bank or credit union account of your choice or into a Direct Express® card account is safer, faster and more reliable than receiving paper benefit checks. In 2010, more than 540,000 Treasury-issued checks were reported lost or stolen, and had to be reissued. With direct deposit, the Treasury Department sends an electronic message to your bank or credit union account on the usual payment day with the exact amount of your benefit payment from Social Security, VA or other federal agency. You don’t have to worry about your money being stolen out of your mailbox and there’s no need to make a trip to cash or deposit a check. Plus, it’s better for the environment and saves taxpayer dollars. Don’t Wait – Sign Up Today! Have a bank or credit union account? Sign up for direct deposit. Your money goes straight into your checking or savings account each month, so you can count on it being there on time, every time. It’s easy. Visit your local financial institution, sign up online at www.GoDirect.org <http://www.godirect.org/ > , or call the U.S. Treasury Processing Center at (800) 333-1795. Prefer a prepaid debit card? The Direct Express® card is a Treasuryrecommended prepaid debit card that provides another safe, low-cost way to get your federal benefit payments. Your money will be posted to your FDIC-insured Direct Express® card account each month, so you can access your money immediately on payment day. There are no sign-up fees, monthly fees or overdraft charges. Some fees for optional services may apply. No bank account or credit check is required. To get your benefit payments through direct deposit, here’s what you’ll need to have when you sign up: The type of account you have (checking or savings) Your financial institution’s nine-digit routing transit number that often comes before your account number at the bottom of your checks* Your checking or savings account number* *This information is often on your personal checks. If you prefer the Direct Express® card, you can: Notify the federal agency, such as the Social Security Administration or Veterans Affairs, of your choice to receive your benefit payments on the card. Visit www.GoDirect.org <http://www.godirect.org/> or call (800) 3331795. Once approved, you’ll receive your card in the mail along with a cardholder information packet explaining how to use the card. For more information, visit www.GoDirect.org <http://www.godirect.org/> . Rhoda & Ron Nadell in memory of George Schult Pearl & Arnold Gould in memory of Karolyn Gould Pearl & Arnold Gould in memory of Violet Cherlin Pearl & Arnold Gould in honor of Judith Pestronk’s 90th birthday Deborah Solomon in memory of Mark Sensale Mary Jo & Carmine Dapice in memory of Frank Falta Betty Becker in honor of Faith Vallante Rosalie Weiner in memory of Naomi Saffern’s mother Mr. & Mrs. Karl Israel in memory of Arthur Abelman Alice & Cliff Cohen in memory of Maureen Josel’s uncle Jason Hibshman in memory of Marvin Rosten In Honor of Barbara Garner’s birthday: Marie Tesoriero; Renee & Bob Berkowitz; Richard & Cynthia Wein; In Memory of Sandy Cohen’s brother, Jerome Sternberg: Alice & Cliff Cohen; Estelle Reichman; Jocelyn Grossman; Rosalie Weiner In Memory of Maureen Josel’s sister Kathleen Costigan: Rosalie Weiner; Lorraine & Eli Kaplan; Alice & Cliff Cohen General Donations: Thomas & Phyllis Maus; The Magazanick Family; Sondra Cohen; Doris & David Gladstone; Ruth Wilkes; Stephen Gereczy; Rosie Rinsler Friendship Network gratefully acknowledges the following Alice & Cliff Cohen in honor of Dr. Koplewicz Barbara Garner in memory of Sam Drusher’s sister Mildred Fine in memory of the Platzker Family’s cousin Julie Rubinstein in memory of Dr. Gertrude Kornblau Esther Cohen in memory of Belle Shahon’s sister Jo Bernstein in memory of her brother Barbara Garner in honor of Cassie Edelstein Maureen Josel in memory of Sandy Cohen’s brother Esther Cohen in memory of Scllafani Family’s mother Rosalie Kurland in memory of Maureen Josel’s sister Sandy Cohen in memory of Maureen Josel’s sister Sandy Cohen in memory of her brother In honor of Barbara Garner’s birthday: Jeannette Edelstein; Barbara Kaplan; Patrice Deza-Castillo; Mr. & Mrs. David Smith; Elizabeth Goldfrank June/July 2011 NAMI Queens/Nassau PATHways Page 12 The Friendship Network: A Day of Bowling By ALICE COHEN I personally think this is a great day to have fun and meet friends, even if you do not bowl. You can sit in the gallery and root for everyone who is bowling and, believe me, it is really fun!! There is great camaraderie; when you bowl a spare or a strike you high-five one another. Did you know that if you get three strikes in a row it is called a Turkey? The best part of the day is that no one really cares how you bowl….Just Do It! Now for the fun people in our group: Andrea K.—bowling, laughing and teaching those that want help; she is always in competition with Jeff R….in a fun way Stephen C.—great form and he usually gets some of the highest scores Jack N.—how lucky we are; he makes sure we are set up correctly and ready to start, and he too is a great bowler Millie N.—Jack’s beautiful wife, hugging everyone and greeting the newcomers John S.—steps in when Jack is not there and is also a very good bowler Beth S.—how we love her …when needed she helps me set up, and the best part is her contagious laugh …. we all laugh along with her The Trio—Lance S., Alan S., Matt B. arrive together and compete in a friendly way We were very fortunate to get a grant to help pay for personalized bowling balls. Many of us took advantage of this gift and that is where Connie C. comes in … Bob S.—usually says he won’t bowl but there he is enjoying himself · Cathy M.—If she cannot meet us for bowling she will be there at the restaurant…a really warm person who greets one and all with a smile · Jared D.—and then there is Jared ….both a comedian and a food maven. He always entertains us! · Inger M.—happy to be everyone’s friend and loves bowling · Barbara P. and Grace H.—great gals … new members who are joining in on the fun · Mark R—everyone enjoys whenever Mark comes to Bowling, they love seeing his smiling face · Geraldine L., Janine B. and Rosina L.— we enjoy seeing at bowling; where have you been? Hope to see you all at bowling real soon. Then we have our own Barbara G., who is so excited with her new bowling ball. She’s doing better with her score … she also makes sure everyone is checked in, and in between she throws her ball down the alley, we all hope she doesn’t go down with the ball!. Now for yours truly; I am the Schmoozer in the group making sure that everyone is mixing and playing and if needed I’m also there for a more serious chat with members. If I missed mentioning any of our wonderful bowlers, please excuse me. Remember, if you want to have fun and meet some great people come on down to Herrill Lanes. Oh…by the way, the bonus of the day is going out for a late lunch/early dinner after bowling, and that is the whip cream on top of the cake! Connie C.—very happy with her new bowling ball and she is bowling better with it! Greta F.—she usually sits out and schmoozes with the guys and gals which is great Scott E.—great guy and good bowler Ben F.—says no at first, but with a little coaxing from Alice, he plays all the games Jillann B. and Richard F.—what a great couple…always speaking with others and enjoys the game Rob R.—what a great guy!! Helps out driving members to restaurants and really enjoys the game Corissa G.—always with a happy smile and enjoys the game Joe F.—knows the game well and scores well …His beautiful wife Julie sometimes joins in Ken L.—no matter what he bowls, he does a great dance ….Keep it up!!! Barbara J.—another fun gal and loves her new bowling ball Michael C., Bruce W., and Harry G.—come from afar and really enjoy the activity For more information on the Friendship Network call (516) 326-6111. June/July 2011 NAMI Queens/Nassau PATHways Page 13 New-Onset Psychosis Linked to Use of Fake Pot BY M. ALEXANDER OTTO Clinical Psychiatry News Digital Network http:www.clinicalpsychiatrynews.com/ index.php?id=2623&type=98&tx_ttnews [tt_news]... HONOLULU – Synthetic marijuana, known as "spice," appears to have induced psychosis in 10 young service members in the U.S. Naval Academy, according to a case series from the Naval Medical Center in San Diego. "These are people who never had psychosis. They were so disorganized, so out of it, we had to lock them up [on our ward]. It’s pretty scary," Dr. Donald Hurst, lead investigator on the study, reported at the annual meeting of the American Psychiatric Association. Psychotic symptoms resolved within 8 days in seven patients. One of those patients had a past diagnosis of attentiondeficit/hyperactivity disorder; the others had no psychiatric histories. Most had been daily users for weeks, months, or up to a year. The remaining three patients still suffer lingering paranoid delusions and dysthymia after 5 months. One has a history of substance abuse and a family history of schizophrenia and had been using spice daily for a year and a half; another has a history of depression and had been using spice daily for a month. The third patient, however, has no personal or family psychiatric history and had used spice about 20 times in two months. The men were in their early 20s. They were each hospitalized 6-10 days. Some had used alcohol, marijuana, or both, with spice. It’s unknown how much the men used during each session. Given the potential consequences, Dr. Hurst advises discussing spice with patients if there’s cause. "Tell them how bad" results of using the substance can be, said Dr. Hurst, a lieutenant commander and third -year psychiatry resident at the medical center. The report is the first to link spice to newonset psychosis in patients with no psychiatric histories. There is no way to know at present how common such reactions are, he said. After they were admitted, 7 of the 10 patients in the case series got atypical antipsychotics, usually for 4 days. Since writing the report, Dr. Hurst and his colleagues have seen about 20 additional cases and have noticed that patients – if they are going to recover – seem to do so regardless of antipsychotic use. Because of that, "we are starting on our ward not to give them anything. You may give them an antipsychotic because behaviorally they are out of control, and we need to tone it down. But if they’re calm, we are not giving them anything, and they are still clearing up in 4-8 days," he said. In terms of presentation, "the most common theme is confusion" along with disorganized behavior and speech. Paranoid delusions also are common, but their focus can shift from minute to minute. Symptoms wax and wane as well, with patients cycling in and out of psychosis hour by hour, sometimes even quicker, Dr. Hurst said. Auditory and visual hallucinations, flat affect, thought-blocking, alogia, suicidal ideation, insomnia, psychomotor retardation, agitation, and anxiety also were noted in the group. "The role of spice in inducing these symptoms was determined by military command, friend, family member and/or patient report, as well as urine drug test," Dr. Hurst noted. Synthetic marijuana is usually a mix of cannabinoid receptor agonists. They are generally full agonists, which distinguishes them from the active ingredient in actual marijuana, tetrahydrocannabinol (THC), which is a partial cannabinoid agonist, Dr. Hurst said. The chemicals originally were developed to help locate cannabinoid receptors and as experimental pain relievers – uses that did not pan out, he said. Plant material is dipped into the chemicals, or sprayed with them, and sold on the Internet or in drug paraphernalia shops as K2, Blaze, RedXdawn, and other brands. Spice is usually smoked, but is beginning to be sold as a crystalline powder. Users have no way of knowing how potent a particular product is, Dr. Hurst said. On March 1, the U.S. Drug Enforcement Agency temporarily designated five synthetic cannabinoids as Schedule I substances, pending further action, "because they pose a threat to public health," according to the order. In January 2011, seven Navy midshipmen were discharged from the Naval Academy because of spice use. In 2008, the U.S. Marine Corps banned the substance because of concern about its increased use among service members. Dr. Hurst said that he has no disclosures. June/July 2011 NAMI Queens/Nassau PATHways Page 14 NAMI Queens/Nassau Support Groups GROUP LEADER/PHONE DATE/TIME LOCATION Sharing & Caring Hillside Hospital Social Worker 3rd Wednesday of each month 6:00—7:15 p.m. The Zucker Hillside Hospital Sloman Auditorium 266th St. & 76th Ave. Glen Oaks Evening Family/Sibling/ Adult Children Rosalie Weiner, LMSW (718) 776-4790 Please call first 1st & 3rd Mondays 7:30—9:30 p.m. NAMI Queens/Nassau office 1981 Marcus Ave, Suite C117 Lake Success, NY Afternoon Family & Friends Rosalie Weiner, LMSW (718) 776-4790 Please call first 1st Tuesday of each month 1:30—3:00 p.m. Advanced Center for Psychotherapy 103-26 68th Rd. Forest Hills Family/Friends Christine Scotten, CSW (516) 521-8341 Please call first 2nd & 4th Wednesdays 7:30—9:30 p.m. Families of Children & Adolescents Amy Maximov (516) 884-6996 Please call first 2nd & 4th Tuesdays 7:30—9:00 p.m. For Those Suffering from Anxiety/Depression Lori Kalman, LMSW (718) 746-3092 Please call first Those with Bipolar Disorder Sandy Kalman, LCSW (718) 470-9552 Please call first 1st & 3rd Tuesdays 7:00—8:30 p.m. Keeping Hope Alive Dr. Frances Cohen Praver (516) 676-1594 or [email protected] 2nd Sunday of the month 10:00 a.m.--Noon Call to register Lattingtown Call the office to register (516) 326-0797 (718) 347-7284 or e-mail [email protected] Zucker Hillside Hospital, Queens Hospital Center, Greater Allen AME Church Dates to be announced Call to Register Location to be determined Flushing Hospital Mental Health Clinic Family to Family 12-week Psycho-education Course Charlotte Driver (516) 385-1400 NAMI Basics 6-week Course for Parents of Children Ceceile Green (718) 704-8690 Liz Hutner (718) 366-6742 1st & 3rd Thursdays 7:00—8:30 p.m. Korean Family Support Group Jennifer Lim, LMSW (917) 346-4038 Please call first 2nd Thursday of each month 7:30—9:00 p.m. For Families Whose Loved Ones Lack Insight Into Their Mental Illness Linda Manzo (516) 767-2221 Please call first 2nd Wednesday of each month 7:00—9:00 p.m. South Asian Support Group ―Raghu‖ Raghavendran (516) 994-8537 1st Saturday of each month 10:30 a.m. NAMI Queens/Nassau office NAMI Queens/Nassau office Zucker-Hillside Hospital Kaufman Bldg, Rm 204 Zucker-Hillside Hospital Ambulatory Care Pavillion Room 1202 Zucker-Hillside Hospital Ambulatory Care Pavillion YICG New Hyde Park
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