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Pass It On Winter 08 09
 

Pass It On Winter 08 09

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Pass It On is a free quarterly

Pass It On is a free quarterly
newsletter for parents of children
with special health care needs and
disabilities, health care professionals
and friends

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    Pass It On Winter 08 09 Pass It On Winter 08 09 Document Transcript

    • Pass It On 1 New Hampshire Family Voices Winter 2009 Visit NHFV Website... Check it out!! NH Family Voices has recently given our web site a whole new look. Some pages are brand new and others have been updated and expanded. Thanks to the re-design we’ve been able to include additional information on our various projects, share information on staff and we still have the potential to grow. We are very excited to have an entire page devoted to the efforts of our teens on the YEAH council, announce the New Hampshire availability of new materials and we even have a place where you can purchase a NH Family Voices coffee mug! Family Voices A Family to Family Of course you can still order Health Information and books from us via the site and Education Center sign up for our newsletter, “Pass It On” or to receive Resources Information other NHFV information. Support Education Our resources and links pages are growing every day as the new Co-Directors Terry Ohlson-Martin site continues to be a “work in Martha-Jean Madison progress”. 1-800-852-3345 X 4525 or (603) 271-4525 We invite you to stop by the site, check it out and please let us know what Email: nhfv@yahoo.com you think. The most important thing about any web-site is it’s helpfulness to those who use it. So try it out and then give us some feedback. We look Web site: www.nhfv.org forward to hearing from you! www.nhfv.org YEAH Council Conference Page 3 And Hands and Voices—NH Chapter Page 10 Inside…. Much Before I was a Special Parent Page 15 More ….. Our Child with a Chronic Illness……. Page 16
    • NH Family Voices 2 2. VISIT the AutismVotes.org PIO Policy Updates website and register to receive their Advocacy Alerts. This will ensure that you receive the most updated information as quickly as ADVOCACY ALERT: possible. Insurance Reform for Autism 3. FORWARD this to your family, HB 569 “Connors Law” friends, neighbors, teachers, therapists and co-workers, anyone The Autism Insurance Reform Movement in New Hampshire has living in the State of New Hamp- begun: Rep. Suzanne Butcher (D-Keene) has filed a bill that would shire who would be interested in require private insurance companies operating in NH to cover standard helping you work to end insurance treatment protocols for autism spectrum disorder. She is joined by discrimination for children with co-sponsors Sen. Maggie Hassan (D-Exeter), Sen. Kathleen Sgambati ASD. (D-Tilton), Sen. Molly Kelly (D-Keene), Sen. Martha Fuller Clark (D- www.connorslaw.info Portsmouth) and Rep. Jill Hammond (D-Peterborough). In 2008, volunteers in five other states - Arizona , Florida , Louisiana , We thank you for your support, Pennsylvania and Illinois, achieved insurance coverage for their Kirsten Murphy children, including coverage for behavior-based treatment. A total of Advocacy Chair, eight states now meet the standards of appropriate coverage as set NH Chapter, Autism Speaks out by Autism Speaks and other national groups. These include ending & autism insurance discrimination and covering treatments and therapies Michelle Jarvis that are medically necessary for our children such as speech, occupa- President, Autism Society of NH tional therapy and behavior-based therapy. NH has a proud tradition in advancing the rights of individuals with disabilities through the grassroots activism of ordinary parents and citizens. We have enlisted the help of the Autism Society of New Hampshire, the Autism Society of America, and Autism Speaks Government Relations Department for technical assistance. However, the real work of educating our legislators about the needs of our children falls to us, the parents and self-advocates who have struggled to make medically necessary treatment affordable and available for all NH families that support someone with ASD. We have a long road ahead through the legislative process. To achieve coverage for children in our state, we need everyone's help! HOW CAN YOU HELP? Interesting Reading 1. EMAIL us at AutismInsuranceReformNH@gmail.com if you are interested in helping to lead efforts in your region, speak with state The Autism Society of America has legislators, attend hearings in Concord , and help us spread the released a paper titled, “Guiding word. We would also like to hear from New Hampshire parents of Principles for Meaningful Private children with ASD who have been denied insurance coverage for a Health Insurance Coverage Legisla- treatment that your child's doctor has determined to be medically tion for Individuals with Autism” necessary (for example, occupational therapy, psychotherapy, or It can be found on their website: a program based on ABA). www.autism-society.org
    • Pass It On 3 YEAH Council New Presents Hampshire “Where I am Coming From, Family Where I am Going” Voices A half day conference for youth with Pass It On is a free quarterly special healthcare needs, disabilities, or chronic health conditions newsletter for parents of children and their families and friends. with special health care needs and disabilities, health care professionals Saturday, March 21, 2009 1:00 - 4:30 PM and friends. Dartmouth Hitchcock Manchester 100 Hitchcock Way This publication is made possible by Manchester, NH funding from NH Department of Health and Human Services, Special Keynote Speaker: Jonathan Mooney Medical Services (Title V, Social Jonathan Mooney is a writer with dyslexia and an activist who learned Security Act). Opinions, activities, products and publications mentioned to read when he was 12 yrs old. He has since earned an honors degree are for informational purposes only in English Literature at Brown University and has written and and do not imply endorsement by published two books. The first, “Learning Outside the Lines” NHDHHS or Special Medical (now in its 14th printing) hit the bookshelves when he was 23. Services. The NH Department of Coupled with his most recent book, “The Short Bus”, Jonathan has Health and Human Services does not established himself as one of the foremost leaders in LD/ADHD, discriminate in its activities on the basis of race, color, national origin, disabilities and alternative education. sex, religion, age or disability. For more information or to register, call NHFV at This publication is not intended to (800) 852-3345 X 4525 or (603) 271-4525 or you can provide medical advice on personal download a registration form off our website, health matters. All health concerns should be discussed directly with your www.nhfv.org (Youth Activity page) physician. Permission is granted to quote from Quiet Leadership this publication, while giving credit to Pass It On, a publication of NH Family The quiet approach to leadership is easy to misunderstand and Voices (and original author, if appro- mock. It doesn't inspire or thrill. It focuses on small things, priate). Some material may carry careful moves, controlled and measured efforts. It doesn't other copyrights as well (noted where appropriate) and cannot be reprinted. provide story lines for uplifting TV shows. In contrast to heroic leadership, quiet leadership doesn't show us the For correspondence: heights that the human spirit can reach. What, then, do the Martha-Jean Madison imperfect, unglamorous, everyday efforts of quiet leaders New Hampshire Family Voices amount to? Almost everything. The vast majority of difficult 129 Pleasant St. Thayer Bldg. human problems are not solved by the dramatic efforts of Concord, NH 03301 people at the top but by the consistent striving of people In state toll free: 1-800-852-3345 working far from the limelight. Ext. 4653 or (603) 271-4653 Joseph L. Badaracco, Jr. E-mail: nhfv@yahoo.com Web site: http://www.nhfv.org We Don't Need Another Hero
    • NH Family Voices 4 Partnering with Your Child’s School: A Guide for Parents. Information and Resources for Families of Children with Health and/or Arthritis Foundation Mental Health Care Needs College Scholarships Being a parent to a child with health or mental The Arthritis Foundation is offer- health care needs can be difficult and exhausting. ing three $1,000 college scholar- We parents are our child’s primary caregiver and ships to high school seniors or the key to his or her success. Therefore, it is very college undergraduates with juve- important that we learn as much as we can about the nile arthritis or other rheumatic child’s condition and needs, and develop partnerships disease. with the child’s doctors, therapists, and school Students must be a resident of staff. We are our child’s best advocate and must CT, ME, NH, RI, VT, Clinton, be informed to be successful. Essex, or Franklin County, NY. Application Deadline: The HSC Foundation, in partnership with George April 17,2009 Washington University’s Graduate School of Education and Human Development, offers a new Applications are available by resource for parents. The booklet “Partnering with mail, e-mail, or fax. Your Child’s School: A guide for Parents - Arthritis Foundation Information and Resources for Families of Children with Health and/ 6 Chenell Dr. or Mental Health Care Needs” is available online in English and in Concord, NH 03301 Spanish. (800) 639-2113 / (603) 224-9322 Fax: (603) 224-3778 This booklet is designed to help parents of children who have been E-mail: info.nne@arthritis.org diagnosed with health or mental health care needs to learn about available resources and to develop a partnership with their children’s schools. The booklet’s content has been reviewed and validated by groups of parents, youth, and educators and is produced in partnership UCB Family RA College with the Council for Exceptional Children and the National Association Scholarships of State Directors of Special Education. UCB pharmaceutical company is NH Family Voices have made copies of these booklets. If you would offering thirty $10,000 college like a printed copy, call us… 800-852-3345 X 4525 scholarships to those with rheumatoid arthritis or To download a copy go to: immediate family members. www.hscfoundation.org/whatwedo/familysupports.php Deadline: March 20, 2009 Contact UCB (888) 854-4996 www.reachbeyondra.com/ scholarship
    • Pass It On 5 New Support Group in Milford, NH Providing Laptop Computers and Internet Asperger’s/NLD Access to Stay In Touch Meets the 2nd Tuesday of the Ask any teen, he will tell you that communication with friends, month from 6:30-8:30 pm family and school is about as important as it gets. Now consider Wadleigh Memorial Library the child, of any age, who is hospitalized, sometimes far from Questions? Call Chris Bonner at home. Communication literally becomes a lifeline. (603) 673-7191 That's where KINfolk can help. Since 1999, KINfolk has been lending laptop computers and internet access to children whose lives have been disrupted by disease and injury. These laptops provide children nationwide and their families a means of communi- cation with friends, family, clergy and teachers - the very people who love and support them at a time when they need it most. The laptops are loaded with games and fun sites for kids along with The FRIENDS Project internet filters to prevent access to undesirable sites. The FRIENDS Project was started KINfolk Hospital Program in 2000 by the Portsmouth School KINfolk provides laptop computers to pediatric hospitals who Department because students and request the service. The computers support dial-up, wired and parents were frustrated over the wireless Internet connections. We encourage hospitals to assign lack of friendships that people laptops to children in their rooms so that they have access to the with disabilities experience. laptop 24 hours a day. Parents and siblings are encouraged to use FRIENDS is a partnership between the laptop as well. the Portsmouth School Department KINfolk Direct Loan Program and a working group of parents and With a referral from a health community members. care professional, KINfolk The FRIENDS Project endeavors provides a loaned laptop to to combat the social isolation that children who are convalescing at many people with disabilities home. Because the computer will Experience through an integrated be used by just one child, each approach that promotes inclusion laptop is tailored to the specific practices. FRIENDS also recog- needs of that child. The child may nizes, encourages and promotes a use the computer from both home and hospital. After the proper variety of relationships in many referral, they deal directly with the child's family, although, in settings. The FRIENDS Project some cases, the child's social worker or hospital volunteer helps offers a number of programs and with arrangements. When the child no longer needs the laptop, it activities. For more information is returned directly to KINfolk. call: Heidi Chase, Executive Direc- For more information contact KINfolk: tor at (603) 436-7100 x2919. Telephone: (302) 765-9550 www.friendsproject.org E-mail: kinfolk1@verizon.net Web: http://www.kinfolkkids.org
    • NH Family Voices 6 NH Family Voices EPILEPSY ON OUR TERMS: STORIES BY CHILDREN WITH Lending Library SEIZURES AND THEIR PARENTS In their own Books are sent through the mail with a words, children postage paid return envelope. with seizures and their parents talk To borrow a book just give us a call at about epilepsy— 1-800-852-3345 Ext 4525 from how they or online @www.nhfv.org handled the first seizure, adjusted to the diagno- sis, managed medication, side effects, dealt with school, THE RED BEAST: CONTROLLING ANGER friends, healthcare providers. IN CHILDREN WITH ASPERGER'S Very honest accounts. SYNDROME Anger is like a big red beast… it yells and LATE, LOST AND hits when it grows. When Rufus is hit in the stomach by a ball, his red UNPREPARED: A beast grows and erupts. This is the story of how Rufus learns to PARENTS' GUIDE control his anger and tame his red beast. TO HELPING CHILDREN WITH 1-2-3 MAGIC FOR KIDS: HELPING YOUR EXECUTIVE CHILDREN UNDERSTAND THE RULES FUNCTIONING A new book designed to help parents explain 1-2-3 Is your child always late turning Magic to their children. This book is presented from in papers? Showing up late for the point of view of young children , and includes games, practice without his soccer puzzles, and lots of illustrations. shoes? Saying things without thinking? This is a practical guide TUBES IN MY EARS: DOWN SYNDROME for parents whose children have AND SURGERY difficulty with planning, organiza- Victoria “Tori” tells the story of going to the tion, impulse control and memory. hospital to have tubes put into her ears. Photos depict the whole process. Very reassuring THE TYRANNOSAURUS TIC story for children who are going to the hospi- Michael can’t stop tal for surgery, his eyes from blinking and then WHAT IS DYSLEXIA?: A BOOK EXPLAINING starts to make DYSLEXIA FOR KIDS AND ADULTS TO USE noises. 12 year TOGETHER old Michael talks Although specifically written to explain Dyslexia to about what it is children ages 8-11, this is a great book for anyone like to have tics who wants information about the types of Dyslexia. It start, kids tease, and then to provides information and examples as well as highlights learn why this is happening to that everyone has strengths. him. Story mixes in a lot of humor with emotions.
    • Pass It On 7 Wentworth-Douglass Hospital presents: Grandfamilies State Law and Community Connection: Parenting Policy Resource Center a Child with Chronic Illness Casey Family Programs, the A Free workshop for Parents and Caregivers American Bar Association Saturday, April 4, 2009 Center on Children and the 8:30am -12:30pm Law, and Generations United The McConnell Center are proud to announce the 30 St. Thomas St., Dover, NH Grandfamilies State Law and Policy Resource Center, Wentworth-Douglass Hospital recognizes the unique found at www.grandfamilies.org. challenges of raising a child with chronic medical This website provides information on state laws needs. They hope the Community Connections will and legislation in support of grandfamilies. The support, encourage, and refresh the parents and easy-to-use database allows for a search of laws caregivers of these special families. The morning and legislation that address common legal ques- will include a dynamic keynote speaker, choice of tions surrounding relative care giving both within breakout topics, lunch, and representatives from a and outside the child welfare system. Each topic variety of community services that offer support to is analyzed and accompanied by a story to show families. key concepts. There is also a list of related For more information call: resources to learn more. Family Resource Center - (603)740-2574 The Including Samuel Project presents the New England Inclusive Education Leadership Summit Friday, April 10, 2009 | Manchester, New Hampshire This day-long summit, sponsored by the Institute on Disability (IOD) at the University of New Hampshire, will give participants the opportunity to: Learn the latest best practices and leadership strategies on inclusive education, meet national leaders of inclusive education, and problem solve and network with peers. Presenters will include the central figures of the documentary film Including Samuel including (pictured above from left) Keith Jones, Betsy McNamara, Joe Petner, Dan Habib, Cheryl Jorgensen, Norman Kunc, and Barbara O'Brien, plus Anne and Emily Huff and staff members of the IOD. Contact Mary Ann Allsop or Cat Jones at (603) 228-2084 for more information.
    • NH Family Voices 8 COMPASSIONATE Social Security News ALLOWANCES FOR SOCIAL SECURITY DISABILITY The initiative called Compassion- ate Allowance, will fast-track On February 17, 2009, President Obama signed the American applications for Social Security Recovery and Reinvestment Act of 2009. This new legislation disability for applicants with any provides a one-time payment of $250 to Social Security and of 25 rare diseases and 25 Supplemental Security Income beneficiaries. cancers whose medical conditions Over 60 million beneficiaries will receive a one-time payment. It is are very severe. expected that all payments will be delivered by late May 2009. There are 6,000 to 7,000 known To assist in issuing these payments as quickly as possible, benefici- rare diseases, many of which aries should not contact Social Security unless they do not receive could qualify for compassionate their payment by June 4th. You can learn more about this allowance. Many people with rare one-time payment at www.socialsecurity.gov diseases encounter delays of months or even years when they SOCIAL SECURITY’S PASS PROGRAM CAN HELP FUND apply for assistance through SSA WORK because those making the deci- The Social Security Administration Plan for Achieving Self-Support sions are not familiar with their (PASS) is an important work incentive for motivated Supplemental diseases. Security Income (SSI) recipients and Social Security Disability Often, people with rare diseases (SSDI) beneficiaries. The purpose of a PASS is to help fund educa- initially are denied assistance but tion, training or other items to reach a specific job goal chosen by later reapply, often with the help the disabled individual. The outcome of a PASS is for the individual of an attorney, and ultimately are to obtain a job that will reduce or eliminate dependence on disabil- approved. The delay and expense ity payments. of attorney fees can be over- To qualify for this program, a person should select a work goal that whelming to people who are is feasible for himself/herself given the nature of the impairment, already coping with serious prior work history and training. The individual then contacts the illness, major medical expenses, local Social Security Office for a PASS form (SSA-545-BK). The and loss of ability to perform application states the job goal, the steps needed to reach the job normal activities, including work. goal, and the expenses needed to reach the job goal. Allowable SSA has partnered with the NIH expenses are expenses necessary to achieve the work goal and must Office of Rare Diseases to bet- be of reasonable cost. There are many people who can help with the ter understand the diseases in application – vocational rehabilitation (VR) counselors, organizations the U.S. classified as rare. that help people with disabilities, the local Social Security Office or anyone else willing to help. The completed application should be To read more about rare mailed or brought into the local Social Security Office. diseases, go to NORD's website (www.rarediseases. org). The PASS Specialists also provide training about PASS to organiza- tions that help people who have disabilities. They are available to To view the SSA list of 25 rare visit with groups to explain in detail how PASS works, how to diseases, and 25 cancers, go to complete the application, and what evidence is needed to support www.socialsecurity. gov/ the application. The PASS Specialists servicing all of New England compassionateallowances. are located in Boston, Massachusetts. You can reach them at 1-800-297-4291 for further questions or to schedule a visit.
    • Pass It On 9 New National Center for Parents with Disabilities and their Families Through the Looking Glass is proud to announce its new National The Assistive Technology Center for Parents with Dis abilities and their Exchange in New England Families. This National Center is funded by NIDRR, U.S. Department of Education. The goal of The Assistive Technol- ogy Exchange in New England is to The Center targets three national populations: put AT equipment that is not parents with diverse disabilities; currently being used into the hands family members; and, of someone who can benefit from service providers and trainees who have a it. The exchange is a free particularly critical impact on parents. quot;classified adquot; designed to help people buy, sell or give away The Center's activities focus on priority issues facing parents with equipment. disabilities and their families: custody and parental evaluations; family The Assistive Technology Exchange roles and personal assistance; paratransit; and, intervention with in New England is primarily for New parents with cognitive and intellectual disabilities and their children. Englanders, although they do accept entries from neighboring The overall goal of this project is to Improve the quality of life among states. Vendor participation is parents with disabilities and their families To meet this long-term Welcome, but they ask that you outcome, they have identified four project objectives that incorporate identify your organization name in the project's research, development, training, technical assistance and your registration Contact dissemination activities: Information. Increase the national availability of accessible and disability Some of the categories of devices appropriate resources for parents with diverse disabilities and listed on The Assistive Technology their families; Exchange in New England are: Increase knowledge of parenting with a disability among diverse Vision parents, family members and providers; Hearing Increase informed practice and informed decisions regarding Speech Communication parenting with a disability among providers; and Mobility, Seating & Positioning Daily Living Increase legislative and policy changes to decrease discrimina- Environmental Adaptations tion against parents with disabilities and their children. Transportation and Vehicle The National Center will be staffed by nationally recognized experts Modifications regarding parents with disabilities, most of whom have personal or Computers and related items family experience with disability or deafness. Recreation, Sports, and Leisure For more information visit their website at: http://lookingglass.org www.getatstuff.org or contact by Phone (voice): (800) 644-2666 Telephone: (860) 424-4881 (V) (TTY): (800) 804-1616 (860) 424-4839 (TTY)
    • NH Family Voices 10 NH Hands and Voices Peer Support Parents from around NH are working to establish a Groups state chapter of Hands & Voices, a national, non- Granite State Independent Living profit organization dedicated to supporting families (GSIL) offers a variety of peer with children who are Deaf or Hard of Hearing support groups for people with without a bias around communication modes or methodology. disabilities. The Peer Support groups meet throughout New The group is a parent-driven organization and they look forward to Hampshire. The groups are working with professionals and members of the D/HH community to cross-disability so anyone provide families with the resources, networks, and information they with a disability can join. need to improve communication access and educational outcomes for their children. Contact information: GSIL - (800) 826-3700 (888- All families and members of the D/HH 396-3459 TTY) and ask to speak community are welcome. Families of with the Peer Group Coordinator, deaf and hard of hearing children or email: pam.locke@gsil.org share a common thread and H&V A listing is also available online provides a welcome spot for kids to www.gsil.org/peer_support.htm get to know other kids who are D/HH and for parents to meet other parents. The group is in it's infancy and Fruits and Vegetables looking for members. They have not yet raised funds to pay for interpreters but if Recipe Data-base you would like to join and need an interpreter, please contact them to let them know. Getting tired of coming up with ideas for meals? The Center of Disease Control (CDC) has a neat You can learn more about local events and web feature that allows you to connecting with other parents at: select the fruit(s) or vegetable(s) http://groups.yahoo.com/group/ then it brings up recipes contain- newhampshirehandsandvoices ing the fruit(s) or vegetable(s) selected. You can also find recipes For more information, please contact us at: by meal type i.e. breakfast, nhhandsandvoices@yahoo.com or dessert, entrée, soups, etc. (800) 852-3345, ext. 4525 Website: To learn more about National Hands and Voices http://apps.nccd.cdc.gov/ Web: www.handsandvoices.org dnparecipe/recipesearch.aspx
    • Pass It On 11 the funeral, the farmer had the cow slaughtered to provide We Are In This Together enough meat for all of them. The mouse looked upon it all from his crack in the wall with great A mouse looked through the crack in the wall to see the farmer and sadness. his wife Open a package. quot;What food might this contain?quot; The mouse So, the next time you hear some- wondered - he was devastated to discover it was a mousetrap. one is facing a problem and think Retreating to the farmyard, the mouse proclaimed the warning. it doesn't concern you, remember quot;There is a mousetrap in the house! There is a mousetrap in the -- when one of us is threatened, house!quot; we are all at risk. The chicken clucked and scratched, raised her head and said, quot;Mr. We are all involved in this journey Mouse, I can tell this is a grave concern to you, but it is of no called life. We must keep an eye consequence to me. I cannot be bothered by it.quot; out for one another and make an extra effort to encourage one The mouse turned to the pig and told him, quot;There is a mousetrap in another. the house! There is a mousetrap in the house!quot; The pig sympathized, but said, quot;I am so very sorry, Mr. Mouse, but there is nothing I can do about it but pray. Be RECREATION and assured, you are in my WELLNESS FOR prayers.quot; PERSONS WITH The mouse turned to the cow and said DISABILITIES quot;There is a mousetrap n the house! There is a mousetrap in the house!quot; Wednesday, March 18, 2009 The cow said, quot;Wow, Mr. Mouse. I'm sorry for you, but it's no skin off Governor’s Commission my nose.quot; on Disability So, the mouse returned to the house, head down and dejected, to 57 Regional Drive, Concord, NH face the farmer's mousetrap alone. from 2:00 PM – 4:00 PM. That very night a sound was heard throughout the house -- like the Jill Gravink, Director of sound of mousetrap catching its prey. Northeast Passage will discuss The farmer's wife rushed to see what was caught. In the darkness, recreation and wellness for she did not see it was a venomous snake whose tail the trap had people with disabilities in caught. New Hampshire. The snake bit the farmer's wife The farmer rushed her to the hospi- This seminar is free and open to tal, and she returned home with a fever. Everyone knows you treat a the public. Contact Karen Geary fever with fresh chicken soup, so the farmer took his hatchet to the at (603) 271-4174 farmyard for the soup's main ingredient. toll free at 1-800-852-3405 or But his wife's sickness continued, so friends and neighbors came to email her at karen.geary@nh.gov sit with the farmer around the clock. To feed them, the farmer Interpreter requests need to be butchered the pig. given two weeks in advance. The farmer's wife did not get well; she died. So many people came for
    • NH Family Voices 12 Social Skills Groups Redesignation of a Developmental Service in Portsmouth System Area Agency Speech Connections Seacoast, New Hampshire's area agencies have the primary regional responsi- a speech and language assess- bility of serving individuals who have a developmental disability or ment and treatment facility in acquired brain disorder and their families. Although on-going assess- downtown Portsmouth is now ments of various aspects of area agency services are routinely done, offering social skills groups for once every five years a comprehensive evaluation is completed by the all ages. State's Bureau of Developmental Services through a process called quot;redesignation.quot; This review of area agencies is required by state For adults ( 18 years and older) regulation and is intended to determine how well the area agencies are with social-pragmatic concerns, meeting their responsibilities. there is a group on Friday nights between 6:30 and 8:00. The The redesignation review of an area agency is carried out by a team target of this group is to learn of Bureau staff. In assessing the area agency performance, the practical ways to interact with teams consider information from a number of sources. Input from a others in the workplace and variety of stakeholders, such as individuals with disabili- community. Each session is six ties, guardians, families, providers, staff members, Board weeks long. of Directors, is solicited. These comments from the consumers and participants of the local service system For teens, there is a group on represent a very important facet of the redesigna- Tuesday nights from 6:45 -- tion findings. In addition, the results of many 8:00 and includes a parent night statewide surveys, interviews and reviews that where parents are expected to are completed regularly out side of the meet with the therapist to redesignation process are incorporated into a discuss what they can do to final report which is submitted at the end of foster social success at home the redesignation process. (These reports are and in the community. public documents; so, anyone who is interested For younger children, there is a in the report may download it, or request a group on Wednesday nights copy from the area agency or the Bureau). from 6:30 --7:30. The criteria used for evaluating area agencies during redesignation All groups are tailored to meet have been adopted from the indicators listed in state rule He-M the dynamic needs of the group 505. Eight quality indicators form the basis for the review and and include a hands-on approach agencies are evaluated on how well they are meeting these indicators. to learning. Fun activities, com- Recognitions of achievement, as well as recommendations for munity outings and video taping improvement, are included in each redesignation report. are included in each group ex- The redesignation review of an area agency culminates in a decision perience. about whether a particular area agency should be redesignated, condi- Groups are limited to a maximum tionally redesignated or de-designated. The team that is responsible of six students so please call to for the review makes a recommendation to the Bureau director learn more. regarding the future status of the area agency. The final decision Jocelyn Lister, MA/CCC-SLP, regarding redesignation is ultimately made by the Bureau director and at (603) 475-9549 is based on the totality of the findings regarding area agency performance. www.speechconnectionsseacoast. To download redesignation reports: com http://www.dhhs.state.nh.us/DHHS/BDS/redesignation.htm
    • Pass It On 13 NH Council Financial Assistance for Health Care on Autism Spectrum Disorders United Health Care Children’s Foundation Medical Assistance Grants The New Hampshire Council on The United Health Care Children’s Foundation Autism Spectrum Disorders was offers parents and caretakers up to $5000 in created by the NH Legislature in grants to help cover medical services to improve 2008 to provide leadership in the the health and quality of life of their children. Granite State’s efforts to im- These grants can be used for such services as prove healthcare, education, and speech therapy, physical therapy, and psycho- services for individuals with au- therapy sessions; medical equipment such as tism spectrum disorders (ASD) wheelchairs, braces, hearing aids, and glasses; and their families. The Council's and orthodontia and dental treatments. composition and charge are described in HB 1634. Children up to age 16 and living in any of the 50 states are eligible for a grant. Families must meet economic guidelines, Findings, recommendations, and live in the US, and be covered by a commercial health plan. Visit the principles published last spring by United Healthcare’s website for more information. www.uhccf.org a previously established commis- sion on Autism Spectrum Disor- ders are to serve as a guide for Disabled Children's Relief Fund the Council’s work. Disabled Children's Relief Fund (DCRF) provides The New Hampshire Council on assistance to obtain wheelchairs, orthopedic Autism Spectrum Disorders has a braces, walkers, lifts, hearing aids, eyeglasses, new website designed to share its medical equipment, physical therapy, and surgery. proceedings, contact information, Blind, Deaf, Amputees, and children with Cere- calendar and other business with bral Palsy, Muscular Dystrophy, Spastic Quadriplegia, Encephalitis, interested members of the Rheumatoid Arthritis, Spina Bifida, Down's Syndrome, and other public. HB 1634 and the Autism disabilities receive assistance. DCRF focuses special attention on Commission Report can also be helping children throughout the U.S. that do not have adequate health found on the website. insurance. To learn more and download an application go to: www.dcrf.com www.nhcouncilonasd.org The HIKE Fund, Inc. (Hearing Impaired Kids Endowment) The purpose of the Fund is to provide hearing de- vices for children with hearing losses between the ages of newborn and twenty years whose parents are unable to meet this special need financially. To learn more and download an application go to: www.thehikefund.org
    • NH Family Voices 14 Stimulus Package Offers COBRA Subsidy Eligibility NH Family Voices has just learned that individuals who lose their jobs between Sept 1, 2008 and December 31, 2009 will have some help from the stimulus package towards their COBRA payments. When you lose your job your employer must offer you the option of COBRA to maintain your health Accessing insurance. This can be extremely expensive and WEB RESOURCES without a job, impossible for many. More and more we have been including web In the stimulus package the government agreed to resources in our newsletter. pay 65% of COBRA premiums for individuals who have lost their jobs between Sept 1, 2008 & Please remember if you DO NOT have access to December 31, 2009. The subsidy is limited to nine these web based resources and information, months and available only to those without another NH Family Voices would be pleased to send you source of group health insurance. Individuals who whatever information you would like printed out. lost jobs after Sept. 1, 2008, but who didn't sign up Just call us at: for COBRA at the time will get a second chance to do so. Employers must send these former workers a 1-800-852-3345 X 4525 notice by mid-April. The former employees will have or (603) 271-4525 60 days after sign up. Eligibility for subsidies doesn't depend on income. But with income above a certain level, you'll be responsible for including the subsidy amount on Homemade Baby Wipes your income tax return. The subsidy money won't come directly to you; it'll Take a roll of quilted Bounty be sent to your employer in the form of an offset and cut it in half (an electric against payroll tax liabilities. You send in your knife works great). payment for 35 percent of the premium and the Put in a container that has a government will credit the remaining 65 percent tight seal. of the premium amount to your former employer. Mix 2 cups of boiling water with 2 Tablespoons of For most people, the subsidies will start March 1. baby oil. Pour over the paper towels and seal. You won't receive reimbursement for any COBRA payments you've paid between Sept. 1 and that Let set for 30 minutes and then turn the paper date. If you have questions, call your former towels. employer, find out who is administering COBRA Let it set for another 30 min. benefits and contact them. If that doesn’t work try the US Dept. of Labor at 866-444-3272 or the And then pull out the cardboard insert. Pull the NH Insurance Department at 800-852-3416. first one from the center and your ready to go.
    • Pass It On 15 Before I was a Special Parent... VACANT SPELLS were related to real Before I was a Special Parent… estate SPASTICITY was a good Jerry Lewis movie The IDEA was just a little bright thought And GUILT came from something I did, not This was written by Kathy Hunter. Her daughter Stacie was the something I didn't do first girl in the USA diagnosed with Rett Syndrome by Dr. Andreas Rett back in 1983 in Baltimore. She went on to be the founder of Before I was a Special Parent... IRSA (International Rett Syndrome Association) now know as IRSF BALANCE referred to my checkbook (International Rett Syndrome Foundation). IRSA was instrumental CIRCULATION was about my hometown in the discovery of the gene that causes Rett Syndrome. newspaper HYPERVENTILATION was limited to Before I was a Special Parent... Rover's greeting I thought RETT SYNDROME was something you got from watching And CURVATURE was very sexy too many reruns of Gone with the Wind that is, after you recovered Before I was a Special Parent... from Scarlet Fever COMMUNICATION was about saying all Before I was a Special Parent... the right things PT meant part time IEP was pronounced IPE OT meant over time INCLUSION meant tax added BRACES were something you wore on your teeth And IMPACTION was a speedway crash And a WIDE GAIT was attached to my fence Before I was a Special Parent... Before I was a Special Parent... My other children were called kids, Not I actually had a savings account SIBLINGS I didn't know that I should have invested heavily in paper towels, They played together, not INTERACTED Attends, Velcro and applesauce And my husband's three most important Before I was a Special Parent... words before drifting off to sleep were I RIGIDITY was my anal-retentive boss Love You instead of DID SHE POOP? SELF-INJURIOUS BEHAVIOR was what I did on a night at the Before I was a Special Parent... casino I thought shoes with VELCRO were for MOOD SWINGS came only with PMS lazy people And VALIUM was used by high-strung socialites ADAPT meant telling someone to get over Before I was a Special Parent... it already I thought BUTTONS went on your blouse, not your belly And ASPIRATION meant ambition GENES were labeled Levi or Guess Continued on page 18 And MUTATIONS were confined to the Incredible Hulk Before I was a Special Parent... I thought the IRSA was the IRS Association HANDWRINGING was what you did after an audit SEIZURE was what they did when you failed And RESIDENTIAL PLACEMENT was a jail term Before I was a Special Parent... STATUS was something you earned, not dreaded And when you got it, MOBILITY was usually upward A FINE MOTOR ACTIVITY was taking the Chevy thru the car wash And a GROSS MOTOR MOVEMENT was the universal one-finger Kate and Stacy today salute http://www.retthelp.org
    • NH Family Voices 16 Our child has a chronic illness. How can we help her cope with this throughout her life? When you first learn that your child has a disability or a chronic disease, the news is often unexpected and can seem devastating. Many families experience a sense of powerlessness at the prospect of dealing with an unexpected illness and facing a future filled with unknowns. Knowledge is power As a first step to coping with your child's special needs, find out as much as you can about her condition and its care. The more information parents and children have, the less frightening the present and future will seem. Knowledge is empowering. It can help both you and your youngster feel more in control of, and less a hostage to, the condition you both must face. Information will also help you guide your child - and serve as her advocate - through the potentially complicated medical-care system. The type of information you convey to your child should be appropriate for your child's age. You can gauge this best by listening to her questions. Studies show, for instance, that kindergarten-age children typically view illness as quite magical: One child, when asked quot;How do you get better from an asthma attack?quot; simply responded, quot;Don't wheeze.quot; Young children who have diabetes may sometimes attribute their illness to eating too much candy. Some youngsters believe they have become ill and been hospitalized as punishment for disobeying their mother or father. Beginning at about ages 10 to 12, children begin to grasp the complex mechanisms that can contribute to disease. By the fourth grade, children tend to believe that germs cause all illness. These older children may be capable of understanding more straightforward information about their disorder. Remember that as children grow up, their ability to understand information and assume responsibility for their own care increases. Every year or so, someone should check out what they understand about their illness, fill in the gaps and correct misperceptions. All too often, the explanations stop at the time of diagnosis. Helping your child cope Stress is a part of life. It motivates us to succeed, but it can also interfere with life's joys and accomplish- ments. Children with chronic illnesses often deal with more stress than other youngsters. For example, they may have to cope with an imperfect body, frequent hospitalizations, painful injections, surgery, or even premature death. A child with kidney disease who requires dialysis three times a week faces predictable and repeated periods of stress. A youngster with cancer, who must undergo repeated chemotherapy, copes with the fears and anxieties of each approaching treatment. A child with epilepsy may feel apprehensive about the possibility of having another seizure. Unfortunately, there are no simple ways to help your child avoid these stresses. Here are some suggestions that may make the situation a little easier. Listen to your child. Whether she is feeling sadness, frustration, or rage, it is helpful for her to express her emotions. She should feel that she can share her thoughts and fears without your
    • Pass It On 17 overreacting or becoming upset. Ask how she is diabetes, you may have to test feeling. Be available and supportive. Listen not her blood sugar level and make only to what your child says, but also try to sure insulin injections are given hear what is left unspoken. regularly during her younger years. If she requires a special Inform your child about what lies ahead. diet, you will need to supervise Anxiety is often based on the unknown or on food choices and eating habits inaccurate presumptions about the future. Find closely. At the same time, out what your child does and does not know. watch for signals from her that Explain exactly what will happen during an she is able to assume greater upcoming doctor's appointment or hospital visit; responsibility, and help her take on more of the if you are unable to answer all your child's management of the illness little by little as she questions, both of you should talk to the grows up. doctor. Do not expose a child to a frightening procedure unless she has been informed of it Some children avoid accepting more independence. beforehand. Conversations with other children Families may inadvertently foster dependency who have gone through the same experiences because they find it easier to maintain responsibil- can be invaluable. ity for their youngster's care, rather than teaching the child to perform certain tasks and relying on quot;Rehearsalquot; can help children cope with her to do so. Also, these children (like most chil- frightening situations. Many hospitals can now dren) may enjoy being the object of their parents' arrange for youngsters to spend time in the special attention. They may relish having certain children's ward before they undergo surgery tasks' performed for them, and may resist taking or other procedures. These visits can famil- responsibility. iarize children with the hospital setting and what to expect. It is critical to help your child come to terms with her health condition and accept appropriate respon- Encourage your youngster to spend time with sibility for caring for herself. Do not deprive your other children with a chronic illness. child of the important and rewarding experience of Frequently talk about the illness or condition mastering day-to-day tasks; it can instill pride and so that your child feels comfortable being open self-confidence that can prepare her for adult life. about it. Praise her efforts at assuming responsibility, and applaud yourself for having the wisdom and courage Emphasize your child's strengths -- to let her take these very important steps. the things she can do well despite the condition. Your pediatrician can help Help your youngster feel that she can be in Discuss with your doctor your concerns and the control of some aspects of her situation. Try limitations you think are reasonable for your child. to find choices that can be given to her, such as Using your physician's input, develop some guide- which arm to have blood drawn from, when a lines for sensible restrictions while also encouraging procedure will occur, or what reward she will your child to participate in a diversity of activities. get for cooperating. Parents need to recognize their children's changing needs and to plan for them. It is also important for Independence parents to be educated and up-to-date about their Children's capacity for independence varies from child's illness and about new treatments and their illness to illness and child to child and will steadily effects. increase with maturity. If your youngster has Continued on page 18
    • NH Family Voices 18 Ryan Judd Our child has a chronic illness... Music Continued from page 17 Therapist Most children with chronic illnesses do well in school, develop appropriately and achieve their What is Music goals in much the same way that other children do. Therapy? Most are healthy children who happen to have a Music therapy is an chronic illness. While their illness may create established health care certain difficulties, with the support of their par- profession that uses music to ents most lead effective and exciting lives and grow accomplish therapeutic goals. In a typical session, up to become productive adults. the client and therapist create musical experiences Published online: 6/07 through instrument play, movement to music, sing- Source: Caring for Your School-Age Child: Ages 5 to 12 (Copyright ing, vocalizing, and song-writing. These experiences © 2003 American Academy of Pediatrics) To order a copy of this book visit the AAP Bookstore. are focused on speech, occupational, physical, academic, and/or behavioral goals. Clients do not The information contained in this article should not be used as a substitute for the medical care and advice of your pediatrician. need any musical skill or experience to participate There may be variations in treatment that your pediatrician may in and benefit from music therapy. recommend based on individual facts and circumstances. Ryan Judd is a board certified music therapist. He has a master’s degree in Music Therapy and a Before I was a Special Parent… bachelor’s degree in Psychology, with an emphasis on Continued from page 15 Child Development. He has been working as a music BUT ALSO therapist with children, adolescents, and adults with special needs for 10 years. In addition to working I didn't know that SORROW never leaves you one on one with clients, Ryan also leads groups where you found it focused on the development of social skills. I didn't know unbridled JOY could come from For more information call (603) 793-1941. heartbreak E-mail: ryanjudd33@gmail.com I didn't know that my child would be my TEACHER Web: www.ryanjudd.net I didn't know the meaning of UNCONDITIONAL LOVE Fatherville I didn't realize that the little stuff is really THE BIG STUFF It's for fathers… by fathers and about fathers and fatherhood. Fatherville has it all! It has information I didn't realize how well someone could and resources for Dads of children with special COMMUNICATE without words needs, teens, first time fathers, home schooling, I didn't know that milestones are not as important legal info, bulletin boards, poems, humor and a as SMILESTONES newsletter. So, if you are a father, a step-father, I didn't know that my child would TOUCH the a male role model, or just a man who knows a kid world not from what she has done, but from what who needs help then Fatherville is for you. she cannot do Fatherville exists soley as an online organization. I didn't know the POWER of her powerlessness http://www.fatherville.com I didn't know that I have so much to LEARN
    • Pass It On 19 Moving Spirit, LLC BOOK The Center for Yoga, Dance, & Wellness DONATIONS Creative Kids Yoga® Class for Students with Special Needs Wednesdays from 4:45-5:30pm Located at Moving Spirit studio on Merrimack/Nashua line Ages 8-14 with parent or caregiver April 1st- June 10th Have fun with basic yoga postures and movement concepts that build strength, coordination, flexibility, and balance! Experience the joy of movement in a welcoming class setting that offers an opportunity for each student to grow in confidence and body awareness. Learn to ease stress with simple breathing exercises and relaxation poses. Do you have books gathering dust on your bookshelf? Wear comfortable clothing, bring a water bottle, and we provide the rest. Appropriate for ages 8-14 with a parent or caregiver present. Are any of them on a specific Class size limited to 10 students. Please pre-register by calling: (603) diagnosis, educational issue, or 886-7308. (Registration form posted on website.) children’s book that address a life issue such as friendship, About the Instructor: Michelle is a life-long creative dancer and divorce, or illness? artist who loves the outdoors. She designs and teaches custom yoga/ dance classes for schools and other venues and facilitates adventure If you no longer have use for programs for all ages. She has worked in a variety of educational, these books but are not sure wilderness, and movement programs with children, including one-on- what to do with them, NH Family one care for individuals with special needs. Michelle is a graduate of Voices will take them and share Pomona College in California and is a 200 hr certified Creative Kids them with other families, Yoga® Instructor professionals, and children. www.movingspirityogadance.com/index.htm Call: 1-800-852-3345 X 4525 Positive Parenting Compliment and encourage your child every day. Smile a lot in your home. Always have a listening ear and feeling heart with your child. Tell them you love them as a person. although there may be a behavior you dislike. Understand and try to meet you child’s need for attention in a positive way to reduce the need for negative attention. Each child is an individual. Treat each child as being special and unique. If your child fails at something, remind him of all his successes and that he will succeed again.
    • NH Family Voices 20 I WOULD LIKE TO RECEIVE “PASS IT ON”... MJ Madison This is a FREE publication. Return to NH Family Voices 129 Pleasant St. Thayer Bldg. Please Print Concord, NH 03301 NAME: ____________________________________________ STREET: ___________________________________________ CITY, STATE, ZIP: __________________________________ Tel. #: (optional) ______________ E-MAIL ADDRESS (If you would like it sent by e-mail): _____________________________________ Family Voices National Information I am a Parent / Family member of a Child/Teen/Adult with a Chronic illness, Physical disability, Learning disability, Developmental Disability, TBI, No disability. I am interested receiving materials on _________________________________________________ I am a Professional working with Families and/or Children/Adolescents/Adults having Chronic illness, Physical disabilities, Learning disabilities, Developmental Disability, TBI, No disabilities. I am interested in material relating to: _________________________________________________ I am a Professional in Education (circle one), EI, Head-Start, Pre-school, Elementary, Middle, High school, Residential setting. Health Care Field (circle one), Community clinic, Hospital, VNA, Physician, Family Practitioner, Nurse. Human Services (explain) _______________ Other:__________________ 8282 PRST. STD. Return Service Requested NHDHHS/SMS U.S. Postage NH Family Voices PAID Concord, NH 129 Pleasant St. Thayer Bldg. PERMIT # 1478 Concord, NH 03301