Pass It On 1 New Hampshire Family Voices

YEAH Council Conference Page 3 Hands and Voices—NH Chapter Page 10 Before I was a Special Parent Page 15 Our Child with a Chronic Illness……. Page 16

Inside….

New Hampshire Family Voices

A Family to Family Health Information and

Education Center

Resources Information Support Education

Co-Directors Terry Ohlson-Martin Martha-Jean Madison

1-800-852-3345 X 4525 or (603) 271-4525

Email: nhfv@yahoo.com

Web site: www.nhfv.org

And Much

More …..

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 availability of new materials and we even have a place where you can purchase a NH Family Voices coffee mug!

Of course you can still order books from us via the site and sign up for our newsletter, “Pass It On” or to receive other NHFV information. Our resources and links pages are growing every day as the new site continues to be a “work in progress”.

We invite you to stop by the site, check it out and please let us know what 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 forward to hearing from you!

www.nhfv.org

NH Family Voices 2

ADVOCACY ALERT: Insurance Reform for Autism

HB 569 “Connors Law”

The Autism Insurance Reform Movement in New Hampshire has begun: Rep. Suzanne Butcher (D-Keene) has filed a bill that would require private insurance companies operating in NH to cover standard treatment protocols for autism spectrum disorder. She is joined by co-sponsors Sen. Maggie Hassan (D-Exeter), Sen. Kathleen Sgambati (D-Tilton), Sen. Molly Kelly (D-Keene), Sen. Martha Fuller Clark (D-Portsmouth) and Rep. Jill Hammond (D-Peterborough).

In 2008, volunteers in five other states - Arizona , Florida , Louisiana , Pennsylvania and Illinois, achieved insurance coverage for their children, including coverage for behavior-based treatment. A total of eight states now meet the standards of appropriate coverage as set out by Autism Speaks and other national groups. These include ending autism insurance discrimination and covering treatments and therapies that are medically necessary for our children such as speech, occupa-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?

1. EMAIL us at AutismInsuranceReformNH@gmail.com if you are interested in helping to lead efforts in your region, speak with state legislators, attend hearings in Concord , and help us spread the word. We would also like to hear from New Hampshire parents of children with ASD who have been denied insurance coverage for a treatment that your child's doctor has determined to be medically necessary (for example, occupational therapy, psychotherapy, or a program based on ABA).

2. VISIT the AutismVotes.org website and register to receive their Advocacy Alerts. This will ensure that you receive the most updated information as quickly as possible.

3. FORWARD this to your family, friends, neighbors, teachers, therapists and co-workers, anyone living in the State of New Hamp-shire who would be interested in helping you work to end insurance discrimination for children with ASD.

www.connorslaw.info

We thank you for your support,

Kirsten Murphy Advocacy Chair,

NH Chapter, Autism Speaks &

Michelle Jarvis President, Autism Society of NH

Interesting Reading

The Autism Society of America has released a paper titled, “Guiding Principles for Meaningful Private

Health Insurance Coverage Legisla-tion for Individuals with Autism” It can be found on their website:

www.autism-society.org

PIO Policy Updates

Pass It On 3

New Hampshire

Family Voices

Pass It On is a free quarterly newsletter for parents of children with special health care needs and disabilities, health care professionals and friends. This publication is made possible by funding from NH Department of Health and Human Services, Special Medical Services (Title V, Social Security Act). Opinions, activities, products and publications mentioned are for informational purposes only and do not imply endorsement by NHDHHS or Special Medical Services. The NH Department of Health and Human Services does not discriminate in its activities on the basis of race, color, national origin, sex, religion, age or disability. This publication is not intended to provide medical advice on personal health matters. All health concerns should be discussed directly with your physician. Permission is granted to quote from this publication, while giving credit to Pass It On, a publication of NH Family Voices (and original author, if appro-priate). Some material may carry other copyrights as well (noted where appropriate) and cannot be reprinted.

For correspondence:

Martha-Jean Madison

New Hampshire Family Voices 129 Pleasant St. Thayer Bldg.

Concord, NH 03301

In state toll free: 1-800-852-3345 Ext. 4653 or (603) 271-4653

E-mail: nhfv@yahoo.com Web site: http://www.nhfv.org

YEAH Council

Presents

“Where I am Coming From, Where I am Going”

A half day conference for youth with

special healthcare needs, disabilities, or chronic health conditions and their families and friends.

Saturday, March 21, 2009 1:00 - 4:30 PM Dartmouth Hitchcock Manchester

100 Hitchcock Way Manchester, NH

Keynote Speaker: Jonathan Mooney

Jonathan Mooney is a writer with dyslexia and an activist who learned to read when he was 12 yrs old. He has since earned an honors degree

in English Literature at Brown University and has written and published two books. The first, “Learning Outside the Lines” (now in its 14th printing) hit the bookshelves when he was 23.

Coupled with his most recent book, “The Short Bus”, Jonathan has established himself as one of the foremost leaders in LD/ADHD,

disabilities and alternative education.

For more information or to register, call NHFV at (800) 852-3345 X 4525 or (603) 271-4525 or you can

download a registration form off our website, www.nhfv.org (Youth Activity page)

Quiet Leadership

The quiet approach to leadership is easy to misunderstand and mock. It doesn't inspire or thrill. It focuses on small things, careful moves, controlled and measured efforts. It doesn't provide story lines for uplifting TV shows. In contrast to heroic leadership, quiet leadership doesn't show us the

heights that the human spirit can reach. What, then, do the imperfect, unglamorous, everyday efforts of quiet leaders

amount to? Almost everything. The vast majority of difficult human problems are not solved by the dramatic efforts of people at the top but by the consistent striving of people

working far from the limelight.

Joseph L. Badaracco, Jr. We Don't Need Another Hero

NH Family Voices 4

Arthritis Foundation College Scholarships

The Arthritis Foundation is offer-ing three $1,000 college scholar-ships to high school seniors or college undergraduates with juve-nile arthritis or other rheumatic disease.

Students must be a resident of CT, ME, NH, RI, VT, Clinton, Essex, or Franklin County, NY.

Application Deadline: April 17,2009

Applications are available by mail, e-mail, or fax.

Arthritis Foundation 6 Chenell Dr.

Concord, NH 03301 (800) 639-2113 / (603) 224-9322

Fax: (603) 224-3778 E-mail: info.nne@arthritis.org

UCB Family RA College Scholarships

UCB pharmaceutical company is offering thirty $10,000 college

scholarships to those with rheumatoid arthritis or

immediate family members.

Deadline: March 20, 2009

Contact UCB (888) 854-4996 www.reachbeyondra.com/

scholarship

Being a parent to a child with health or mental health care needs can be difficult and exhausting. We parents are our child’s primary caregiver and the key to his or her success. Therefore, it is very important that we learn as much as we can about the child’s condition and needs, and develop partnerships with the child’s doctors, therapists, and school staff. We are our child’s best advocate and must be informed to be successful. The HSC Foundation, in partnership with George Washington University’s Graduate School of Education and Human Development, offers a new resource for parents. The booklet “Partnering with Your Child’s School: A guide for Parents -

Information and Resources for Families of Children with Health and/or Mental Health Care Needs” is available online in English and in Spanish. This booklet is designed to help parents of children who have been 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 with the Council for Exceptional Children and the National Association of State Directors of Special Education.

NH Family Voices have made copies of these booklets. If you would like a printed copy, call us… 800-852-3345 X 4525

To download a copy go to:

www.hscfoundation.org/whatwedo/familysupports.php

Partnering with Your Child’s School: A Guide for Parents. Information and Resources for

Families of Children with Health and/or Mental Health Care Needs

Pass It On 5

Providing Laptop Computers and Internet Access to Stay In Touch

Ask any teen, he will tell you that communication with friends, family and school is about as important as it gets. Now consider the child, of any age, who is hospitalized, sometimes far from home. Communication literally becomes a lifeline.

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 internet filters to prevent access to undesirable sites.

KINfolk Hospital Program KINfolk provides laptop computers to pediatric hospitals who request the service. The computers support dial-up, wired and wireless Internet connections. We encourage hospitals to assign laptops to children in their rooms so that they have access to the laptop 24 hours a day. Parents and siblings are encouraged to use the laptop as well.

KINfolk Direct Loan Program With a referral from a health care professional, KINfolk provides a loaned laptop to children who are convalescing at home. Because the computer will be used by just one child, each laptop is tailored to the specific needs of that child. The child may

use the computer from both home and hospital. After the proper referral, they deal directly with the child's family, although, in some cases, the child's social worker or hospital volunteer helps with arrangements. When the child no longer needs the laptop, it is returned directly to KINfolk.

For more information contact KINfolk:

Telephone: (302) 765-9550 E-mail: kinfolk1@verizon.net

Web: http://www.kinfolkkids.org

New Support Group in

Milford, NH

Asperger’s/NLD

Meets the 2nd Tuesday of the month from 6:30-8:30 pm Wadleigh Memorial Library

Questions? Call Chris Bonner at (603) 673-7191

The FRIENDS Project

The FRIENDS Project was started in 2000 by the Portsmouth School Department because students and parents were frustrated over the lack of friendships that people with disabilities experience. FRIENDS is a partnership between the Portsmouth School Department and a working group of parents and community members.

The FRIENDS Project endeavors to combat the social isolation that many people with disabilities Experience through an integrated approach that promotes inclusion practices. FRIENDS also recog-nizes, encourages and promotes a variety of relationships in many settings. The FRIENDS Project offers a number of programs and activities. For more information call: Heidi Chase, Executive Direc-tor at (603) 436-7100 x2919.

www.friendsproject.org

NH Family Voices 6

Books are sent through the mail with a postage paid return envelope.

To borrow a book just give us a call at 1-800-852-3345 Ext 4525

or online @www.nhfv.org

THE RED BEAST: CONTROLLING ANGER IN CHILDREN WITH ASPERGER'S SYNDROME Anger is like a big red beast… it yells and hits when it grows. When Rufus is hit in the stomach by a ball, his red beast grows and erupts. This is the story of how Rufus learns to control his anger and tame his red beast.

1-2-3 MAGIC FOR KIDS: HELPING YOUR CHILDREN UNDERSTAND THE RULES A new book designed to help parents explain 1-2-3 Magic to their children. This book is presented from the point of view of young children , and includes games, puzzles, and lots of illustrations.

TUBES IN MY EARS: DOWN SYNDROME AND SURGERY Victoria “Tori” tells the story of going to the hospital to have tubes put into her ears. Photos depict the whole process. Very reassuring story for children who are going to the hospi-tal for surgery,

WHAT IS DYSLEXIA?: A BOOK EXPLAINING DYSLEXIA FOR KIDS AND ADULTS TO USE TOGETHER Although specifically written to explain Dyslexia to children ages 8-11, this is a great book for anyone who wants information about the types of Dyslexia. It provides information and examples as well as highlights that everyone has strengths.

EPILEPSY ON OUR TERMS: STORIES BY CHILDREN WITH SEIZURES AND THEIR PARENTS In their own words, children with seizures and their parents talk about epilepsy—from how they handled the first seizure, adjusted to the diagno-sis, managed medication, side effects, dealt with school, friends, healthcare providers. Very honest accounts.

LATE, LOST AND UNPREPARED: A PARENTS' GUIDE TO HELPING CHILDREN WITH EXECUTIVE FUNCTIONING

Is your child always late turning in papers? Showing up late for practice without his soccer shoes? Saying things without thinking? This is a practical guide for parents whose children have difficulty with planning, organiza-tion, impulse control and memory. THE TYRANNOSAURUS TIC Michael can’t stop his eyes from blinking and then starts to make noises. 12 year old Michael talks about what it is like to have tics start, kids tease, and then to learn why this is happening to him. Story mixes in a lot of humor with emotions.

NH Family Voices Lending Library

Pass It On 7

Casey Family Programs, the American Bar Association Center on Children and the Law, and Generations United are proud to announce the Grandfamilies State Law and Policy Resource Center,

found at www.grandfamilies.org.

This website provides information on state laws and legislation in support of grandfamilies. The easy-to-use database allows for a search of laws and legislation that address common legal ques-tions surrounding relative care giving both within and outside the child welfare system. Each topic is analyzed and accompanied by a story to show key concepts. There is also a list of related resources to learn more.

Grandfamilies State Law and Policy Resource Center

Wentworth-Douglass Hospital presents:

Community Connection: Parenting a Child with Chronic Illness

A Free workshop for Parents and Caregivers Saturday, April 4, 2009

8:30am -12:30pm The McConnell Center

30 St. Thomas St., Dover, NH

Wentworth-Douglass Hospital recognizes the unique challenges of raising a child with chronic medical needs. They hope the Community Connections will support, encourage, and refresh the parents and caregivers of these special families. The morning will include a dynamic keynote speaker, choice of breakout topics, lunch, and representatives from a variety of community services that offer support to families.

For more information call: 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

On February 17, 2009, President Obama signed the American Recovery and Reinvestment Act of 2009. This new legislation provides a one-time payment of $250 to Social Security and Supplemental Security Income beneficiaries.

Over 60 million beneficiaries will receive a one-time payment. It is expected that all payments will be delivered by late May 2009. To assist in issuing these payments as quickly as possible, benefici-aries should not contact Social Security unless they do not receive their payment by June 4th. You can learn more about this one-time payment at www.socialsecurity.gov

SOCIAL SECURITY’S PASS PROGRAM CAN HELP FUND WORK

The Social Security Administration Plan for Achieving Self-Support (PASS) is an important work incentive for motivated Supplemental Security Income (SSI) recipients and Social Security Disability (SSDI) beneficiaries. The purpose of a PASS is to help fund educa-tion, training or other items to reach a specific job goal chosen by the disabled individual. The outcome of a PASS is for the individual to obtain a job that will reduce or eliminate dependence on disabil-ity payments.

To qualify for this program, a person should select a work goal that is feasible for himself/herself given the nature of the impairment, prior work history and training. The individual then contacts the local Social Security Office for a PASS form (SSA-545-BK). The application states the job goal, the steps needed to reach the job goal, and the expenses needed to reach the job goal. Allowable expenses are expenses necessary to achieve the work goal and must be of reasonable cost. There are many people who can help with the application – vocational rehabilitation (VR) counselors, organizations that help people with disabilities, the local Social Security Office or anyone else willing to help. The completed application should be mailed or brought into the local Social Security Office.

The PASS Specialists also provide training about PASS to organiza-tions that help people who have disabilities. They are available to visit with groups to explain in detail how PASS works, how to complete the application, and what evidence is needed to support the application. The PASS Specialists servicing all of New England are located in Boston, Massachusetts. You can reach them at 1-800-297-4291 for further questions or to schedule a visit.

COMPASSIONATE ALLOWANCES FOR SOCIAL SECURITY DISABILITY

The initiative called Compassion-ate Allowance, will fast-track applications for Social Security disability for applicants with any of 25 rare diseases and 25 cancers whose medical conditions are very severe.

There are 6,000 to 7,000 known rare diseases, many of which could qualify for compassionate allowance. Many people with rare diseases encounter delays of months or even years when they apply for assistance through SSA because those making the deci-sions are not familiar with their diseases.

Often, people with rare diseases initially are denied assistance but later reapply, often with the help of an attorney, and ultimately are approved. The delay and expense of attorney fees can be over-whelming to people who are already coping with serious illness, major medical expenses, and loss of ability to perform normal activities, including work.

SSA has partnered with the NIH Office of Rare Diseases to bet-ter understand the diseases in the U.S. classified as rare.

To read more about rare diseases, go to NORD's website

(www.rarediseases. org).

To view the SSA list of 25 rare diseases, and 25 cancers, go to

www.socialsecurity. gov/compassionateallowances.

Social Security News

Pass It On 9

The Assistive Technology Exchange in New England

The goal of The Assistive Technol-ogy Exchange in New England is to put AT equipment that is not currently being used into the hands of someone who can benefit from it. The exchange is a free "classified ad" designed to help people buy, sell or give away equipment.

The Assistive Technology Exchange in New England is primarily for New Englanders, although they do accept entries from neighboring states. Vendor participation is Welcome, but they ask that you identify your organization name in your registration Contact Information.

Some of the categories of devices listed on The Assistive Technology Exchange in New England are: Vision Hearing Speech Communication Mobility, Seating & Positioning Daily Living Environmental Adaptations Transportation and Vehicle Modifications Computers and related items Recreation, Sports, and Leisure

www.getatstuff.org

Telephone: (860) 424-4881 (V) (860) 424-4839 (TTY)

Through the Looking Glass is proud to announce its new National Center for Parents with Dis abilities and their Families. This National Center is funded by NIDRR, U.S. Department of Education. The Center targets three national populations: parents with diverse disabilities; family members; and, service providers and trainees who have a particularly critical impact on parents.

The Center's activities focus on priority issues facing parents with disabilities and their families: custody and parental evaluations; family roles and personal assistance; paratransit; and, intervention with parents with cognitive and intellectual disabilities and their children. The overall goal of this project is to Improve the quality of life among parents with disabilities and their families To meet this long-term outcome, they have identified four project objectives that incorporate the project's research, development, training, technical assistance and dissemination activities:

Increase the national availability of accessible and disability appropriate resources for parents with diverse disabilities and their families;

Increase knowledge of parenting with a disability among diverse parents, family members and providers;

Increase informed practice and informed decisions regarding parenting with a disability among providers; and

Increase legislative and policy changes to decrease discrimina- tion against parents with disabilities and their children.

The National Center will be staffed by nationally recognized experts regarding parents with disabilities, most of whom have personal or family experience with disability or deafness.

For more information visit their website at: http://lookingglass.org

or contact by Phone (voice): (800) 644-2666 (TTY): (800) 804-1616

New National Center for Parents with Disabilities and their Families

NH Family Voices 10

Parents from around NH are working to establish a state chapter of Hands & Voices, a national, non- profit organization dedicated to supporting families with children who are Deaf or Hard of Hearing

without a bias around communication modes or methodology. The group is a parent-driven organization and they look forward to working with professionals and members of the D/HH community to provide families with the resources, networks, and information they need to improve communication access and educational outcomes for their children. All families and members of the D/HH community are welcome. Families of deaf and hard of hearing children share a common thread and H&V provides a welcome spot for kids to get to know other kids who are D/HH and for parents to meet other parents. The group is in it's infancy and looking for members. They have not yet raised funds to pay for interpreters but if you would like to join and need an interpreter, please contact them to let them know.

You can learn more about local events and connecting with other parents at:

http://groups.yahoo.com/group/newhampshirehandsandvoices

For more information, please contact us at: nhhandsandvoices@yahoo.com or

(800) 852-3345, ext. 4525

To learn more about National Hands and Voices Web: www.handsandvoices.org

Fruits and Vegetables Recipe Data-base

Getting tired of coming up with ideas for meals? The Center of Disease Control (CDC) has a neat web feature that allows you to select the fruit(s) or vegetable(s) then it brings up recipes contain-ing the fruit(s) or vegetable(s) selected. You can also find recipes by meal type i.e. breakfast, dessert, entrée, soups, etc.

Website: http://apps.nccd.cdc.gov/

dnparecipe/recipesearch.aspx

Peer Support Groups

Granite State Independent Living (GSIL) offers a variety of peer support groups for people with disabilities. The Peer Support groups meet throughout New Hampshire. The groups are cross-disability so anyone with a disability can join.

Contact information: GSIL - (800) 826-3700 (888-

396-3459 TTY) and ask to speak with the Peer Group Coordinator,

or email: pam.locke@gsil.org

A listing is also available online www.gsil.org/peer_support.htm

NH Hands and Voices

Pass It On 11

A mouse looked through the crack in the wall to see the farmer and his wife Open a package. "What food might this contain?" The mouse wondered - he was devastated to discover it was a mousetrap.

Retreating to the farmyard, the mouse proclaimed the warning. "There is a mousetrap in the house! There is a mousetrap in the house!"

The chicken clucked and scratched, raised her head and said, "Mr. Mouse, I can tell this is a grave concern to you, but it is of no consequence to me. I cannot be bothered by it."

The mouse turned to the pig and told him, "There is a mousetrap in the house! There is a mousetrap in the house!"

The pig sympathized, but said, "I am so very sorry, Mr. Mouse, but there is nothing I can do about it but pray. Be assured, you are in my prayers."

The mouse turned to the cow and said "There is a mousetrap n the house! There is a mousetrap in the house!"

The cow said, "Wow, Mr. Mouse. I'm sorry for you, but it's no skin off my nose."

So, the mouse returned to the house, head down and dejected, to face the farmer's mousetrap alone.

That very night a sound was heard throughout the house -- like the sound of mousetrap catching its prey.

The farmer's wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught.

The snake bit the farmer's wife The farmer rushed her to the hospi-tal, and she returned home with a fever. Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredient.

But his wife's sickness continued, so friends and neighbors came to sit with the farmer around the clock. To feed them, the farmer butchered the pig.

The farmer's wife did not get well; she died. So many people came for

We Are In This Together the funeral, the farmer had the cow slaughtered to provide enough meat for all of them.

The mouse looked upon it all from his crack in the wall with great sadness.

So, the next time you hear some-one is facing a problem and think it doesn't concern you, remember -- when one of us is threatened, we are all at risk.

We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another.

RECREATION and WELLNESS FOR PERSONS WITH DISABILITIES

Wednesday, March 18, 2009

Governor’s Commission on Disability

57 Regional Drive, Concord, NH from 2:00 PM – 4:00 PM.

Jill Gravink, Director of

Northeast Passage will discuss recreation and wellness for people with disabilities in

New Hampshire.

This seminar is free and open to the public. Contact Karen Geary

at (603) 271-4174 toll free at 1-800-852-3405 or email her at karen.geary@nh.gov

Interpreter requests need to be given two weeks in advance.

NH Family Voices 12

Redesignation of a Developmental Service System Area Agency

New Hampshire's area agencies have the primary regional responsi-bility of serving individuals who have a developmental disability or acquired brain disorder and their families. Although on-going assess-ments of various aspects of area agency services are routinely done, once every five years a comprehensive evaluation is completed by the State's Bureau of Developmental Services through a process called "redesignation." This review of area agencies is required by state regulation and is intended to determine how well the area agencies are meeting their responsibilities.

The redesignation review of an area agency is carried out by a team of Bureau staff. In assessing the area agency performance, the teams consider information from a number of sources. Input from a variety of stakeholders, such as individuals with disabili-ties, guardians, families, providers, staff members, Board of Directors, is solicited. These comments from the consumers and participants of the local service system represent a very important facet of the redesigna-tion findings. In addition, the results of many statewide surveys, interviews and reviews that are completed regularly out side of the redesignation process are incorporated into a final report which is submitted at the end of the redesignation process. (These reports are public documents; so, anyone who is interested in the report may download it, or request a copy from the area agency or the Bureau).

The criteria used for evaluating area agencies during redesignation have been adopted from the indicators listed in state rule He-M 505. Eight quality indicators form the basis for the review and agencies are evaluated on how well they are meeting these indicators. Recognitions of achievement, as well as recommendations for improvement, are included in each redesignation report.

The redesignation review of an area agency culminates in a decision about whether a particular area agency should be redesignated, condi-tionally redesignated or de-designated. The team that is responsible for the review makes a recommendation to the Bureau director regarding the future status of the area agency. The final decision regarding redesignation is ultimately made by the Bureau director and is based on the totality of the findings regarding area agency performance.

To download redesignation reports: http://www.dhhs.state.nh.us/DHHS/BDS/redesignation.htm

Social Skills Groups in Portsmouth

Speech Connections Seacoast, a speech and language assess-ment and treatment facility in downtown Portsmouth is now offering social skills groups for all ages.

For adults ( 18 years and older) with social-pragmatic concerns, there is a group on Friday nights between 6:30 and 8:00. The target of this group is to learn practical ways to interact with others in the workplace and community. Each session is six weeks long.

For teens, there is a group on Tuesday nights from 6:45 --8:00 and includes a parent night where parents are expected to meet with the therapist to discuss what they can do to foster social success at home and in the community.

For younger children, there is a group on Wednesday nights from 6:30 --7:30.

All groups are tailored to meet the dynamic needs of the group and include a hands-on approach to learning. Fun activities, com-munity outings and video taping are included in each group ex-perience.

Groups are limited to a maximum of six students so please call to learn more.

Jocelyn Lister, MA/CCC-SLP, at (603) 475-9549

www.speechconnectionsseacoast.com

Pass It On 13

United Health Care Children’s Foundation Medical Assistance Grants

The United Health Care Children’s Foundation offers parents and caretakers up to $5000 in grants to help cover medical services to improve the health and quality of life of their children. These grants can be used for such services as speech therapy, physical therapy, and psycho-therapy sessions; medical equipment such as wheelchairs, braces, hearing aids, and glasses; and orthodontia and dental treatments.

Children up to age 16 and living in any of the 50 states are eligible for a grant. Families must meet economic guidelines, live in the US, and be covered by a commercial health plan. Visit the United Healthcare’s website for more information. www.uhccf.org

Disabled Children's Relief Fund

Disabled Children's Relief Fund (DCRF) provides assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. Blind, Deaf, Amputees, and children with Cere-

bral Palsy, Muscular Dystrophy, Spastic Quadriplegia, Encephalitis, Rheumatoid Arthritis, Spina Bifida, Down's Syndrome, and other disabilities receive assistance. DCRF focuses special attention on helping children throughout the U.S. that do not have adequate health insurance. To learn more and download an application go to:

www.dcrf.com 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 Council on Autism Spectrum Disorders

The New Hampshire Council on Autism Spectrum Disorders was created by the NH Legislature in 2008 to provide leadership in the Granite State’s efforts to im-prove healthcare, education, and services for individuals with au-tism spectrum disorders (ASD) and their families. The Council's composition and charge are described in HB 1634.

Findings, recommendations, and principles published last spring by a previously established commis-sion on Autism Spectrum Disor-ders are to serve as a guide for the Council’s work.

The New Hampshire Council on Autism Spectrum Disorders has a new website designed to share its proceedings, contact information, calendar and other business with interested members of the public. HB 1634 and the Autism Commission Report can also be found on the website.

www.nhcouncilonasd.org

Financial Assistance for Health Care

NH Family Voices 14

Stimulus Package Offers COBRA Subsidy Eligibility

Accessing WEB RESOURCES

More and more we have been including web resources in our newsletter.

Please remember if you DO NOT have access to these web based resources and information,

NH Family Voices would be pleased to send you whatever information you would like printed out.

Just call us at:

1-800-852-3345 X 4525 or (603) 271-4525

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 insurance. This can be extremely expensive and without a job, impossible for many. In the stimulus package the government agreed to pay 65% of COBRA premiums for individuals who have lost their jobs between Sept 1, 2008 & December 31, 2009. The subsidy is limited to nine months and available only to those without another source of group health insurance. Individuals who lost jobs after Sept. 1, 2008, but who didn't sign up for COBRA at the time will get a second chance to do so. Employers must send these former workers a notice by mid-April. The former employees will have 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 your income tax return. The subsidy money won't come directly to you; it'll be sent to your employer in the form of an offset against payroll tax liabilities. You send in your payment for 35 percent of the premium and the government will credit the remaining 65 percent of the premium amount to your former employer. For most people, the subsidies will start March 1. You won't receive reimbursement for any COBRA payments you've paid between Sept. 1 and that date. If you have questions, call your former employer, find out who is administering COBRA benefits and contact them. If that doesn’t work try the US Dept. of Labor at 866-444-3272 or the NH Insurance Department at 800-852-3416.

Homemade Baby Wipes Take a roll of quilted Bounty and cut it in half (an electric knife works great).

Put in a container that has a tight seal.

Mix 2 cups of boiling water with 2 Tablespoons of baby oil. Pour over the paper towels and seal.

Let set for 30 minutes and then turn the paper towels.

Let it set for another 30 min.

And then pull out the cardboard insert. Pull the 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 estate SPASTICITY was a good Jerry Lewis movie The IDEA was just a little bright thought And GUILT came from something I did, not something I didn't do

Before I was a Special Parent... BALANCE referred to my checkbook CIRCULATION was about my hometown newspaper HYPERVENTILATION was limited to Rover's greeting And CURVATURE was very sexy

Before I was a Special Parent... COMMUNICATION was about saying all the right things IEP was pronounced IPE INCLUSION meant tax added And IMPACTION was a speedway crash

Before I was a Special Parent... My other children were called kids, Not SIBLINGS They played together, not INTERACTED And my husband's three most important words before drifting off to sleep were I Love You instead of DID SHE POOP?

Before I was a Special Parent... I thought shoes with VELCRO were for lazy people ADAPT meant telling someone to get over it already And ASPIRATION meant ambition

Continued on page 18

Kate and Stacy today

http://www.retthelp.org

Before I was a Special Parent…

This was written by Kathy Hunter. Her daughter Stacie was the 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 IRSA (International Rett Syndrome Association) now know as IRSF (International Rett Syndrome Foundation). IRSA was instrumental in the discovery of the gene that causes Rett Syndrome.

Before I was a Special Parent...

I thought RETT SYNDROME was something you got from watching too many reruns of Gone with the Wind that is, after you recovered from Scarlet Fever

Before I was a Special Parent... PT meant part time OT meant over time BRACES were something you wore on your teeth And a WIDE GAIT was attached to my fence

Before I was a Special Parent... I actually had a savings account I didn't know that I should have invested heavily in paper towels, Attends, Velcro and applesauce

Before I was a Special Parent... RIGIDITY was my anal-retentive boss SELF-INJURIOUS BEHAVIOR was what I did on a night at the casino MOOD SWINGS came only with PMS And VALIUM was used by high-strung socialites

Before I was a Special Parent... I thought BUTTONS went on your blouse, not your belly GENES were labeled Levi or Guess 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 salute

NH Family Voices 16

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 "How do you get better from an asthma attack?" simply responded, "Don't wheeze." 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

Our child has a chronic illness. How can we help her cope with this throughout her life?

Pass It On 17

overreacting or becoming upset. Ask how she is feeling. Be available and supportive. Listen not only to what your child says, but also try to hear what is left unspoken.

Inform your child about what lies ahead. Anxiety is often based on the unknown or on inaccurate presumptions about the future. Find out what your child does and does not know. Explain exactly what will happen during an upcoming doctor's appointment or hospital visit; if you are unable to answer all your child's questions, both of you should talk to the doctor. Do not expose a child to a frightening procedure unless she has been informed of it beforehand. Conversations with other children who have gone through the same experiences can be invaluable.

"Rehearsal" can help children cope with frightening situations. Many hospitals can now arrange for youngsters to spend time in the children's ward before they undergo surgery or other procedures. These visits can famil- iarize children with the hospital setting and what to expect.

Encourage your youngster to spend time with other children with a chronic illness.

Frequently talk about the illness or condition so that your child feels comfortable being open about it.

Emphasize your child's strengths -- the things she can do well despite the condition.

Help your youngster feel that she can be in control of some aspects of her situation. Try to find choices that can be given to her, such as which arm to have blood drawn from, when a procedure will occur, or what reward she will get for cooperating. Independence Children's capacity for independence varies from illness to illness and child to child and will steadily increase with maturity. If your youngster has

diabetes, you may have to test her blood sugar level and make sure insulin injections are given regularly during her younger years. If she requires a special diet, you will need to supervise food choices and eating habits closely. At the same time, watch for signals from her that she is able to assume greater responsibility, and help her take on more of the management of the illness little by little as she grows up.

Some children avoid accepting more independence. Families may inadvertently foster dependency because they find it easier to maintain responsibil-ity for their youngster's care, rather than teaching the child to perform certain tasks and relying on her to do so. Also, these children (like most chil-dren) may enjoy being the object of their parents' special attention. They may relish having certain tasks' performed for them, and may resist taking responsibility.

It is critical to help your child come to terms with her health condition and accept appropriate respon-sibility for caring for herself. Do not deprive your child of the important and rewarding experience of mastering day-to-day tasks; it can instill pride and self-confidence that can prepare her for adult life. Praise her efforts at assuming responsibility, and applaud yourself for having the wisdom and courage to let her take these very important steps.

Your pediatrician can help Discuss with your doctor your concerns and the limitations you think are reasonable for your child. Using your physician's input, develop some guide-lines for sensible restrictions while also encouraging your child to participate in a diversity of activities. Parents need to recognize their children's changing needs and to plan for them. It is also important for parents to be educated and up-to-date about their child's illness and about new treatments and their effects.

Continued on page 18

NH Family Voices 18

Our child has a chronic illness... Continued from page 17 Most children with chronic illnesses do well in school, develop appropriately and achieve their goals in much the same way that other children do. Most are healthy children who happen to have a chronic illness. While their illness may create certain difficulties, with the support of their par-ents most lead effective and exciting lives and grow up to become productive adults.

Published online: 6/07 Source: Caring for Your School-Age Child: Ages 5 to 12 (Copyright © 2003 American Academy of Pediatrics) To order a copy of this book visit the AAP Bookstore.

The information contained in this article should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.

Before I was a Special Parent… Continued from page 15 BUT ALSO

I didn't know that SORROW never leaves you where you found it

I didn't know unbridled JOY could come from heartbreak

I didn't know that my child would be my TEACHER

I didn't know the meaning of UNCONDITIONAL LOVE

I didn't realize that the little stuff is really THE BIG STUFF

I didn't realize how well someone could COMMUNICATE without words

I didn't know that milestones are not as important as SMILESTONES

I didn't know that my child would TOUCH the world not from what she has done, but from what she cannot do

I didn't know the POWER of her powerlessness

I didn't know that I have so much to LEARN

Ryan Judd Music

Therapist What is Music Therapy?

Music therapy is an established health care profession that uses music to accomplish therapeutic goals. In a typical session, the client and therapist create musical experiences through instrument play, movement to music, sing-ing, vocalizing, and song-writing. These experiences are focused on speech, occupational, physical, academic, and/or behavioral goals. Clients do not need any musical skill or experience to participate in and benefit from music therapy.

Ryan Judd is a board certified music therapist. He has a master’s degree in Music Therapy and a bachelor’s degree in Psychology, with an emphasis on Child Development. He has been working as a music therapist with children, adolescents, and adults with special needs for 10 years. In addition to working one on one with clients, Ryan also leads groups focused on the development of social skills.

For more information call (603) 793-1941. E-mail: ryanjudd33@gmail.com

Web: www.ryanjudd.net

Fatherville

It's for fathers… by fathers and about fathers and fatherhood. Fatherville has it all! It has information

and resources for Dads of children with special needs, teens, first time fathers, home schooling,

legal info, bulletin boards, poems, humor and a newsletter. So, if you are a father, a step-father, a male role model, or just a man who knows a kid

who needs help then Fatherville is for you. Fatherville exists soley as an online organization.

http://www.fatherville.com

Pass It On 19

Moving Spirit, LLC The Center for Yoga, Dance, & Wellness

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.

Wear comfortable clothing, bring a water bottle, and we provide the rest. Appropriate for ages 8-14 with a parent or caregiver present. Class size limited to 10 students. Please pre-register by calling: (603)886-7308. (Registration form posted on website.)

About the Instructor: Michelle is a life-long creative dancer and artist who loves the outdoors. She designs and teaches custom yoga/dance classes for schools and other venues and facilitates adventure programs for all ages. She has worked in a variety of educational, wilderness, and movement programs with children, including one-on-one care for individuals with special needs. Michelle is a graduate of Pomona College in California and is a 200 hr certified Creative Kids Yoga® Instructor

www.movingspirityogadance.com/index.htm

Do you have books gathering dust on your bookshelf?

Are any of them on a specific diagnosis, educational issue, or children’s book that address a life issue such as friendship,

divorce, or illness?

If you no longer have use for these books but are not sure

what to do with them, NH Family Voices will take them and share

them with other families, professionals, and children.

Call: 1-800-852-3345 X 4525

BOOK DONATIONS

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

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