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Autism Spectrum The Official Publication of the Autism Society of New Hampshire P O Box 68, Concord, NH 03302-0068 Spring 2009 Issue From The President’s Desk... Dear Members, Finally, it’s time for our annual walk! This is our biggest fundraiser of the year, and is a lot of fun. It has been a long winter and I am so happy to I hope you will join us and help promote autism have spring and warmer weather here! The past few awareness, raise money to help people in our state, months have been busy and some good work is and have a good time. moving forward. The council and workgroups have been busy establishing infrastructure, getting I hope you all have a fun summer! organized, and deciding how to address each of the recommendations in the commission’s report. The Michelle Jarvis first annual report was given to the Governor and President legislature on April 1st. It can be viewed at Autism Society of NH http://nhcouncilonasd.homestead.com/index.html. Recently, a bill for insurance coverage for What’s Inside ... individuals with ASD was heard in the house. I testified for this bill along with others who believe Invitation for Workgoup Page 2 that coverage is necessary. The house committee Board Member Spotlight Page 3 formed a sub-committee, which recommended that Selecting Trustee Page 4 the bill be retained for study. This is good, and will Teen’s T-Shirt Project Page 6 give us a chance to gather more information on Support Groups Page 8-10 insurance coverage/needs in NH. The bill is HB 569 Autism Legislation Page 10 and you can find more information at Membership Form Page 11 http://www.connorslaw.info/. At a national level, the Autism Society of America has asked that the Labor, Health and Human Visit the Services, and Education Subcommittee provide full funding the 3rd year of the Combating Autism Act Autism Society of (CAA) in 2010. The CAA authorizes a total of $211 New Hampshire’s million for a variety of critical autism activities. They have also asked that the Department of Defense Web site at www.nhautism.com Appropriations Subcommittee provide $15 million for for a current schedule of events autism research in the Research and Development of Defense Health Programs account. and conferences. Autism Society of NH – Page - 2 Invitation For Workgroup Participation! The NH Council on Autism Spectrum Disorders has established workgroups to address the Commission’s recommendations. Each workgroup needs participants that are on the spectrum. It is important that the input and perspective of individuals living with ASD is included in the decision making process. If you, or someone you know, would be well suited for this role please contact us via email at firstname.lastname@example.org. Join ASNH for some Fun in the Sun! 6th Annual A Walk in the Sun, Saturday, May 9, 2009 Registration begins at 9:00 am Walk begins at 10:00 am Audubon Center at Lake Massabesic, Auburn, N.H. To register or for more information, visit www.nhautism.com, e-mail at email@example.com or call 679-2424 100% of the money raised from this fundraiser benefits the Autism Society of N.H. and remains in the state to help families living with autism. ASNH Officers and Directors OFFICERS Michelle Jarvis - President ~ Chris Jarvis - Vice President Janet Wright - Secretary Bruno DelGreco - Treasurer BOARD OF DIRECTORS Stephen Anderson - Web Master, Jocelyn Lister, Viki Gayhardt, Janet Wright, Deb Genthner, Amy Frechette, Kristine Caster and Steve Hambleton - Editor, Autism Spectrum Staff Heather Karolian - Executive Assistant HONORARY BOARD MEMBER Brian Mikol Autism Society of NH – Page - 3 Board Member Spotlight Christopher Jarvis, CFA, CMT has served as the Vice President of the Autism Society of New Hampshire since January of 2004 and is entering his sixth year of service. Mr. Jarvis is the parent of a child on the Autism Spectrum, which helps provide real world insights on the issues that local communities face in New Hampshire. In addition to being VP of ASNH, Mr. Jarvis is the founder and president of Caprock Risk Management, LLC. Prior to starting CRM, Chris was a commodities analyst at Merrill Lynch (following the recent acquisition of Advest in November 2005) focusing on energy risk management for producers, distributors, and end-users of Natural Gas. Mr. Jarvis’s personal connections with Autism as well as his business experiences are key characteristics that have helped ASNH grow over the past several years. Mr. Jarvis received his B.A. Degree in history and minored in political science with a certificate in international relations from the University of Massachusetts and his MBA degree in finance from the University of Connecticut. Christopher has earned the right to use the Chartered Financial Analyst (CFA) designation. He is a member of the CFA Institute as well as the Boston Security Analysts Society (BSAS). Lastly, Christopher has also earned the right to use the Chartered Market Technician (CMT) designation and is a member of Market Technicians Association (MTA). In his spare time, Mr. Jarvis enjoys spending time with his children, family and friends. In addition, Chris plays baseball in an independent baseball league (Granite State Baseball League) where he co-manages the Merrimack Dodgers. Anyone interested in contacting Mr. Jarvis, please email him at firstname.lastname@example.org. The Autism Society of N.H. (ASNH) has teamed up with the NH Fisher Cats and the Granite State Baseball League (GSBL) for Autism Awareness Day! July 19, 2009 Tickets are on sale now for $8.00/pp with $3.00 going to ASNH. All money raised via ticket sales are reinvested in the state of NH. The GSBL has teamed up for the first time with the ASNH/Fisher Cats and will be selling tickets to help raise money and awareness. To learn more about this exciting doubleheader and to purchase tickets, visit our website www.nhautism.com. Autism Society of NH – Page - 4 Selecting a Trustee for Your Child’s Special Needs Trust One of the key factors in predicting whether a special needs trust will succeed in accomplishing your objectives is the selection of the trustee; when the beneficiary of the special needs trust suffers from mental illness or a neurological disorder finding an ideal trustee may be the single most important consideration. A brief review of the role of trusts, in general, and special needs trusts in particular, will help illustrate the importance of the trustee’s role. In essence, a trust is a contract. The most common type of trust is the revocable “living trust,” which generally is used to avoid the probate court process at death. The living trust avoids the cost and delay of the probate court process if assets are re-titled into the name of the trust; at death, the trustee distributes the trust assets to named successor beneficiaries in accordance with the terms of the trust/contract. With respect to an irrevocable special needs trust, however, the central purpose is to set aside assets for a disabled person, including a child, without affecting the child’s financial eligibility for public benefits programs, such as Medicaid and Supplemental Security Income (SSI). If the special needs trust is drafted properly, the assets contained in the trust will not count as the child’s asset/resource; and, if administered appropriately, the distributions will not count as income to the child. Simply put, a special needs trust works because the child has no right to demand distributions from the trust; rather, full discretion over the use of trust assets rests solely with the trustee. Having full discretion means that the trustee can deny any request the child/beneficiary might make, even if reasonable. The trustee of a special needs trust has a number of responsibilities. First, the trustee is responsible for investing trust funds and managing other trust property, such as real estate. Given the volatility of financial and real estate markets, this duty alone can be overwhelming for many individuals. Second, the trustee must respond to requests for distributions. Since a special needs trust is designed principally to supplement public benefits which may come in the form of cash or medical assistance, the trustee must understand of the different public benefit programs in order to evaluate whether the assistance requested should or could be covered by a public source. Third, when making distributions, the trustee must be mindful that certain distributions might be counted as “income” to the trust beneficiary; if a mistake is made, a trustee unwittingly may cause a disruption in the beneficiary’s Food Stamps, Medicaid, SSI or other benefits. Many parents initially are inclined to appoint family members or close friends as trustees of a special needs trust, perhaps hoping to save money in the form of trustee fees, or to recognize the important role that individual has played in their child’s life. Unfortunately, many trusts fail because trustees, even though well intentioned, often are ill equipped for the complexity of the job. For instance, when it comes to investing money and managing real estate, professional trustees – such as trust companies, banks or certain non-profits – generally are more skilled and knowledgeable than laypersons. In addition, professionals either are better informed about the ins and outs of public benefits eligibility, or they know when to seek out expert assistance. More importantly, by not having a personal history with the trust beneficiary, professionals are more likely to respond to calls from a beneficiary without fatigue or irritation. In contrast, family members or friends often find that relationships with the trust beneficiary become strained by having to field multiple requests for assistance. Thus, rather than being a brother, sister, uncle or friend to whom the beneficiary might turn for social interaction or emotional support, that individual now becomes the gatekeeper of funds – or, the person who denies requests. Although it may be imprudent to name family members or friends to serve as trustee, there are other important roles they can play. For instance, a special needs trust can be designed to have a “trust advisory committee, which would be entitled to accountings from the trustee, and would be empowered to guide and oversee the trustee. Other trusts have a “trust protector,” whereby a family member is given the authority to replace the trustee at any time. Under either of these structures, family members and friends are involved, but in a strictly supervisory capacity which also provides a check and balance on the trustee. Butenhof & Bomster, PC 132 Middle Street – Manchester, NH 03101 Phone (603) 296-0428 Fax (603) 296-0430 email@example.com At Butenhof & Bomster, PC, we focus our practice in the areas of elder law, estate planning, Medicaid planning, special needs trusts planning, guardianships, and probate and trust administration. Simply put, our philosophy is that each client's circumstances are unique and deserving of individualized attention and planning, regardless of whether such planning involves the creation of a complex trust structure or simply the execution of a health care power of attorney. Autism Society of NH – Page - 5 Autism Society of NH – Page - 6 Concord Teen’s T-Shirt Project Comes Full Circle By Viki Gayhardt Austin Fisher was having a tough time in school and feeling pretty bad about things when in January 2007 he looked for a project to do in the New Year that would make him feel good again. As a collector, Austin first thought he’d acquire every state flower, but his mom, Anmarie Kemp of Concord, advised that flowers wouldn’t likely survive the NH winter. That's when Austin decided to collect state t-shirts instead. With a little guidance from his mother, Austin wrote a letter to every state governor with his t-shirt request and awaited a reply. Although Austin expected some response, he didn’t foresee getting 100% participation! Austin wore one state t-shirt a day for the last fifty days of his 6th grade. His mom brought him to school every morning and photographed him wearing each shirt. “When we were done we put all the pictures in order on the computer.” Although Austin denies having a favorite shirt from the collection, he says he especially likes those that are autographed by the state governors. But the project wasn’t complete with the acquisition of the t-shirts. Austin and his family needed an opportunity to share his collection and celebrate his accomplishment. The perfect opportunity arose in August of 2007 when an autism awareness reception hosted by Easter Seals/The Family Place of Dover was held for local families and a group of college graduates who had roller bladed from Florida to Maine raising awareness for autism. The “Rolling for Autism” roller blade team was warmly welcomed to the state by 50 NH children with Autism Spectrum Disorder modeling all 50 of Austin’s t-shirts! Austin recalls the Rolling for Autism event as a lot of fun, but his t-shirt project was not yet complete. “My mom asked my brothers and me that if she could make our worlds perfect, what would we want? My brothers and sister have autism too. We said different sayings that we thought would make it easier for people to understand us.” Austin’s mom then put the pictures she’d been taking onto video accompanied by music with the quotations from Austin and his siblings about their idea of a more perfect world. Austin was interviewed by WMUR-TV when Governor Richardson was campaigning in New Hampshire and agreed to meet him. “Governor Richardson had sent his t-shirt to my school. I got to thank him in person for his signed t-shirt from New Mexico.” Austin met Governor Richardson a second time to give him a copy of the video when he was back in New Hampshire. Recently, Austin and his family met with Governor Lynch and give him a copy of the video and Austin’s picture as a thank you. “It was good to meet the governor of New Hampshire. He was really nice, and he felt like a family member to me. I hope he watches my video and likes it.” So what’s next for Austin Fisher’s Autism Around America project? “I am sending my video back to the governors with a thank you note for helping me with my project. They also get a picture of me wearing their state t-shirt.” When asked what he hopes will come of his project, Austin states, “I wish everyone could see my video so that they could learn about kids like me. I think it would help people to understand us. I am going to save my t- shirts so I can show my kids that anything is possible.” As for future projects, Austin is thinking about writing to the NASCAR drivers for t-shirts! Austin’s video can be viewed at www.myspace.com/busyb46 and www.photoshow.com/members/whydon/all. Autism Society of NH – Page - 7 Once again we want to thank Spectrum Marketing Companies for their continued support and generous printing donation of the Autism Spectrum, our official publication. If you are in need of their services please call them ~ 603-627-0042 and show your appreciation. Spectrum Marketing Companies 97 Eddy Rd., Manchester, NH 03102 or visit their web at www.spectrummarketing.com The Autism Society of New Hampshire welcomes advertising in their quarterly newsletter to help with the costs of mailing. ADVERTISING RATES ARE: full page ... 7"wide by 9 1/2" deep, $100. 1/2 page ... 7"wide by 4 3/4" deep, $ 50. 1/4 page ... 3 1/2" wide by 4 3/4" deep, $25 and business card 3 1/2" wide by 2 1/4" deep, $15 WITH A YEAR (4 ISSUE) COMMITMENT ~ 15% OFF. Please contact Steve Hambleton, Editor ASNH Autism Spectrum at PO BOX 68, Concord, NH 03302 or firstname.lastname@example.org The Autism Society of New Hampshire now welcomes advertising on their web site home page! 3 months: $30 6 months: $60 1 year: $100 (2 months free!) Please contact Steve Anderson, ASNH Webmaster at email@example.com for more information. Autism Society of NH – Page - 8 Support Groups and Contacts Bedford, NH SPED PAC OF BEDFORD. Bedford Special Education Parent Advisory Council is a parent partnership with the Bedford community to further awareness, education and support for special needs children and their families. Meetings are held the first Wednesday of the month, from 8:30 - 10:30 a.m. at the Bedford Safety Complex, 55 Constitution Drive in Bedford. Visit www.spedpacofbedford.org for more information. Conway, NH Asperger’s/NLD parent Support Group. A support group for parents with children who have social deficits – including ADHD and PDD-NOS. Meets once a month at the Conway Public Library – 3rd or 4th Wednesday of the month from 6:30 - 8:00 pm (see local calendar section of newspapers). Join with other parents to share your concerns or advice. Guest speakers for particular interests. Contact Robin Lurie- Meyerkopf at 520-4780 or firstname.lastname@example.org, email@example.com or www.socialskillsinfo.org. Dover, NH Aspergers Social Group. The group meets the last Thursday of the month at the Wentworth Douglass Hospital in Dover, N.H. We meet from 6:00 – 8:00 pm. Room location to be announced. Group members share what has happened since the last time we met and we usually play some sort of game. In additional we plan an additional activity (bowling, movie, mini golf...) within the community for some other evening. Snacks are available. Contact is Kip Deese-Laurent at 664-8857 or firstname.lastname@example.org. Lakes Region Autism support group for parents, grandparents and caretakers. Please call Lisa DiMartino at 524-881, ext. 189 or email@example.com for dates, times and locations. Lisa is the Family to Family Coordinator for Lakes Region Community Services and will be the facilitator of the support group. There will be guest speakers to help answer some questions or concerns about autism. Manchester, NH Area Autism Network at Easter Seals – Parent Support meetings held monthly on weekdays from 10:00 am - 12:00 noon at the Auburn Street facility. Contact Elizabeth Webster at 621-3444 or firstname.lastname@example.org for further information. Manchester, NH Area Manchester Regional Autism Support Group meetings are held the first Monday of the month from 7:00 - 9:00 pm at the Moore Center, Region VII Area Agency, 195 McGregor St., Unit 400, Manchester, NH 03102. (Across from Catholic Medical Center.) Enter through the Center Entrance and take the elevator to the fourth floor. Contact Susan Marcotte-Jenkins at the Moore Center 206-2802 or Susan.MarcotteJenkins@moorecenter.org, or Steve Hambleton at 647-9567 or email@example.com for additional information. Manchester, NH Developmental Pre-School Contact Karen Davis from the Manchester Developmental Pre- School 555 Auburn Street, Manchester NH at 624-6340 for further information. Milford, NH Milford Caregiver Support Group For Parents of Special Needs Children 2nd and 4th Thursdays 9:30 - 10:30 am. Call 673-3460 for more information. Free childcare is available. Milford, NH Asperger’s Support Group. Meetings are on the second Tuesday of the month at Milford Library. For more information on times, etc., contact the group’s facilitator, Chris Bonner at firstname.lastname@example.org. Nashua, NH Gateways Community Services Autism Support/Parent Group, meets at the Gateways Community Services on the second Wednesday of each month from 6:30 - 8:30 p.m. Contact Noel Marcoux at email@example.com for more information. Sibling Support Group. Contact Karin Harvey-Olsen at the Gateways Community Services in Nashua at firstname.lastname@example.org. Autism Society of NH – Page - 9 Support Groups and Contacts Continued from Page 8 Nashua, NH Gateways Community Services Asperger’s Support/Parent Group, meets at the Gateways Community Services on the third Thursday of each month from 6:30 - 8:30 p.m. Contact Noel Marcoux at email@example.com for more information. NH Asperger’s Association of New England Chapter. Visit their website at www.aane.org for more information. North Conway The Puzzle Project Autism Support Group, Parents/Caregivers of Kids with Autism (birth-12yrs) The first Monday of each month. 6:30pm - 8:30pm Mount Washington Valley Children's Museum 936 White Mountain Highway North Conway, NH 03860. Please check the MWV Children’s Museum’s website (www.mwvchildrensmuseum.com) for cancellations or changes. For more information contact the museum at 356-2992 or Kelly J. Evans at firstname.lastname@example.org. Peterborough, NH Peterborough Autism Spectrum Support Group. A support group for parents of children on the autism spectrum who are ages 10 and under. We meet on the 1st and 3rd Tuesday of the month from 6:30 – 8:00 pm at the River Center, 46 Concord Street, Peterborough. Free, experienced on-site childcare is available. For more information please contact Donna Brand at 924-2159 or email@example.com at Under One Roof Project, www.underoneroofproject.org. Plymouth, NH Parent Support Group Meeting for parents of children with special needs to share current events, success stories/failures, books, social stories and more. Drinks and snacks will be provided. Sponsored by Lakes Region Community Services. For more information contact Lisa DiMartino at 524-8811 ext. 189 or Barbara Stout at 726-3311. Raymond, NH Autism Parent Networking Meetings An opportunity for sharing, caring and camaraderie! Morning groups, 2nd Wednesday of the month, 9:30 - 11:00 am. Evening Groups, 3rd Monday of the month, 6:30 - 8:30 pm. Please RSVP to Viki Gayhardt at firstname.lastname@example.org or 895-1522. The Family Place at Easter Seals, Cozy Corner Plaza, 61 Route 27/107, Raymond, NH 03077. Strafford County, Rochester, NH Informed Hope ASD: Autism Spectrum Support Group for families and caregivers. The group meets on the 2nd Tuesday of the month from 6:00-8:00 pm at the Emmanuel Advent Church, 34 Eastern Ave, Rochester, NH 03868. Note: Childcare may be available. Please call us in advance to make arrangements. This group services Strafford county and surrounding communities and Maine. Family activities throughout the year. Contact parents Kyle Szczepanik at 335-5286 or email@example.com, or Suzanne Fletcher at 942-8386, or Deidre at 332-8683. Upper Valley, VT Facilitated Support Group sponsored by ARCH. Held on the first Monday of each month from 6:30-8:30 pm at ARCH #80 Route 5 South, Norwich, VT. Please contact Kirsten Murphy at ARCH for directions (802) 649-2720 or ARCH@valley.net. *The Autism Society of New Hampshire makes every effort to keep this information accurate. Support Group schedules change frequently. Contact the support group for the most up-to-date information. Report changes to Heather at firstname.lastname@example.org or call 603-679-2424. The Autism Society of New Hampshire does not endorse any of the attached or following information. It is being supplied strictly for informational purposes. Autism Society of NH – Page - 10 Comprehensive Autism Legislation Introduced in U.S. Congress Autism Society of America Applauds Inclusion of Lifespan Services and Supports Today, Senators Richard Durbin (D-IL), Robert Casey (D-PA) and Robert Menendez (D-NJ) introduced the Autism Treatment and Acceleration Act of 2009 (ATAA). The Autism Society of America strongly supports this comprehensive autism legislation focused around enhancing the quality of life for individuals on the autism spectrum and their families. Originally drafted by President Obama as a Senator, the bill includes aspects of legislation introduced in previous sessions of Congress, including the Expanding the Promise of Individuals with Autism Act, sponsored by then-Senator Hillary Clinton. "This is the bill we have been waiting on for generations," said Lee Grossman, President and CEO of the Autism Society of America. "The adult services focus, care centers, national teacher training, and insurance components of this bill will complement and strengthen the important research currently underway. Moreover, this bill creates opportunities for states to develop solutions that are locally driven and relevant. As an advocate, and as a father, my heartfelt thanks go to Senators Durbin, Casey, and Menendez for their efforts to help the millions of Americans affected by autism today." ASA especially applauds the inclusion of support services for adults on the autism spectrum in this bill. Currently, the federal government provides for educational services until age 21; however, autism is a lifelong disorder, and when the school bus stops coming, individuals and families are often left to fend for themselves. A recent Easter Seals/Mass Mutual study found that 77% of parents of children with ASD are concerned about their child’s future quality of life and 79% were also concerned about their child’s future independence. ATAA addresses this fear with a demonstration project to provide an array of services to adults with autism spectrum disorders, including: postsecondary education; vocational and self-advocacy skills; employment; residential services, supports and housing; nutrition, health and wellness; recreational and social activities; and transportation and personal safety. The legislation also would provide for the establishment of a national network to strengthen linkages between research and service initiatives at the federal, regional, state and local levels, and facilitate the translation of research on autism into services and treatments that will improve the quality of life for individuals with autism and their families. A national data repository would be created to share emerging data, findings and treatment models. Other key aspects of the bill include: - the establishment of a national training initiative on autism and a technical assistance center to develop and expand interdisciplinary training and continuing education on autism spectrum disorders; and - a requirement that health insurers cover the diagnosis and treatment of autism spectrum disorders, including Applied Behavior Analysis, assistive communication devices and other effective treatments. DISCLAIMER All information provided or published by the Autism Society of New Hampshire (ASNH) is for informational purposes only. Under ASA’s Option Policy you are responsible for the choice of any treatment or therapy option or service provider. Specific treatment, therapy or services should be provided to an individual only at the direction of the individual’s doctor, caregiver or other qualified professional. Reference to any treatment or therapy option or to any program, service or treatment provider is not an endorsement by ASNH of the treatment or therapy option, program, service or provider referenced. Autism Society of NH – Page - 11 ASNH MEMBERSHIP FORM Become a member of ASNH today or renew your annual membership! The Autism Society of New Hampshire (ASNH) receives no state or federal funding. Support of the ASNH, through membership and donations, is vital in allowing us to continue our mission of “improving the lives of all affected by autism through education, advocacy and support”. At the Autism Society of New Hampshire, it is our goal to provide our members with the most current and valuable resources available concerning Autism Spectrum Disorders (ASD). Some of the many benefits of membership include: • The ASNH quarterly newsletter, “The Autism Spectrum” • FREE Autism Awareness ribbon with information packet for NEW members to ASNH • Member social events throughout the year, which provides families the opportunity to get together in a fun, relaxed environment. • Scholarship opportunities to attend conferences and workshops (visit www.nhautism.com to view our calendar of events) Scholarship application link located on our home page. • Members who provide their e-mail address* receive legislative e-mail alerts and updates on workshops and events throughout the state. *ASNH respects every member’s privacy and never shares e-mail addresses. All e-mails from ASNH are sent blind carbon copy (bcc) to respect your privacy. To become a member of ASNH or to renew your membership by mail: Circle one: New Renewal Name:_____________________________________ __Annual family membership: $30 __Annual individual membership: $15 __Annual student membership: $10 __Donation: $_____ Address:_____________________________________________________________________________ City:_____________________________ State:______________________ Zip code:_______________ Telephone:_______________________ E-mail:__________________________________________ Mail this form along with your check to: Autism Society of N.H., PO Box 68, Concord, NH 03302-0068 Thank you for your support! Autism Society of NH Michelle Jarvis, President P. O. Box 68 Concord, N.H. 03302-0068
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