Links
Deaf-Blind Resources
- American Association of the Deaf-Blind (AADB)
- www.tr.wou.edu/dblink/aadb.htm
AADB is a national consumer advocacy organization for people who have combined hearing and vision impairments that promotes better opportunities and services for Deaf-Blind people.
8630 Fenton Street, Suite 121
Silver Spring, MD 20910-3803
301-495-4402: TTY
301-495-4403: Voice
301-495-4404: Fax
aadb-info@addb.org - DB-LINK: The National Information Clearinghouse on Children Who are Deaf-Blind
- www.nationaldb.org
DB-LINK is available to parents, educators, employers, service providers, consumers and other professionals. There is information on early intervention, education, health, legal issues, transition, IFSPs, IEPs, IYPs, post secondary education, medical, employment, inclusion, technology, recreation services, independent living, social support, parents, and families.
345 N. Monmouth Ave.
Monmouth, OR 97361
800-854-7013: TTY
800-438-9376: Voice
info@nationaldb.org - Family Voices of North Dakota (FVND)
- www.fvnd.org
Family Voice of North Dakota mission: Family Voices, a national grassroots network of families and friends, advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs; promotes the inclusion of all families as decision makers at all levels of health care; and supports essential partnerships between families and professionals.
Family Voices of North Dakota was started in 1996 and became a State Chapter formally sanctioned by the national organization in the first quarter of 2001.
The FVND Health Information and Education Center: Assist families as they navigate public and private systems and insurance plans. Provide assistance to families in accessing services and resources for their children and how to partner with providers and caregivers. Listen to families as they describe their encounters with systems and help guide them to possible solutions. To work with families, health care providers, public and private agencies, and advocacy or support groups to promote family-centered care and medical homes for children with special health care needs. To promote discussion and linkages among families, providers, managed care programs, and government to better serve the health care and related needs of children and families in North Dakota.
PO Box 163
312 2nd Ave. W.
Edgeley, ND 58433
701-493-2634: Voice
701-493-2635: Fax
888-522-9654: Toll free
fvnd@dartel.net - ND Parent to Parent
- A project of Family Voices of ND is a statewide network of parents supporting families of children with developmental delays, disabilities, and special health needs. As trained supporting parents, we offer assistance in learning the necessary skills to help parents face the challenges of raising their child. We are not counselors or therapists. We are parents who have experienced the feelings and emotions that come after learning that our children have a developmental delay, disability, or other special health needs. We offer moral support and encourage parents to feel comfortable and optimistic about the future. Parent to Parent is dedicated to supporting families at their most challenging times and to celebrating each new victory. Parents helping parents, it's a simple concept that works. If you are a provider and would like to refer to the ND Parent to Parent Program, please use the referral form below and fax it to us: www.fvnd.org/nd_parent_to_parent
- Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC)
- www.helenkeller.org/
This national organization provides advocacy, assessment, consultation, community education, family support, professional training workshops, and information.
141 Middle Neck Road
Sand Point, NY 11050-1299
516-944-8900 Ext.253: Voice/TTY
516-944-7302: Fax - Interagency Project for Assistive Technology (IPAT)
- www.ndipat.org
IPAT is an equipment loan library that facilitates consumers to work with a piece of equipment before purchasing.
P.O. Box 743
Cavalier, ND 58220
800-265-4728: Voice and TTY
ipatinfo@integra.net
Fargo Office
3509 Interstate Blvd
Fargo, ND 58103
701-365-4728: Voice
701-365-6242: Fax
800-895-4728: Toll free
Bismarck Office
400 East Broadway
Bismarck, ND 58501
701-355-4615: Voice
701-258-7474: Fax
800-540-4728: Toll free - Medical Genetics, University of Kansas Medical Center
- www.kumc.edu/gec/support
- National Family Association for Deaf-Blind (NFADB)
- www.nfadb.org
NFADB is a national network of families who focus on issues surrounding Deaf-Blindness and is a non-profit, volunteer-based family association. Our philosophy is that individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of the community. NFADB is the largest national network of families focusing on issues surrounding deaf blindness.
NFADB exists to empower the voices of families of individuals who are deaf-blind and advocate for their unique needs.
141 Middle Neck Road
Sands Point, NY 11050
800-255-0411: Voice and TTY
516-883-9060: Fax - National Information Center for Children and Youth with Disabilities (NICHCY)
- www.nichcy.org
NICHCY provides free information to assist parents, educators, caregivers, and others in helping children and youth with disabilities participate as fully as possible in school, at home, and in the community.
P.O. Box 1492
Washington, D.C. 20013-1492
800-695-0285: Voice and TTY
202-884-8441: Fax
nichcy@aed.org - National Organization for Rare Disorders (NORD)
- www.rarediseases.org
It is a private not-for-profit organization dedicated to helping people with rare disorders and assisting organizations that serve them. Articles on over 4,000 rare diseases are available.
55 Kenosia Avenue, PO Box 1968
Danbury, CT 06813-1968
203-744-0100: Voice
800-999-6673: Voicemail only 203-797-9590: TTY
203-798-2291: Fax - National Technical Assistance Consortium for Children and Young Adults Who are Deaf-Blind (NTAC)
- www.nationaldb.org
The National Consortium on Deaf-Blindness: The Teaching Research Institute works collaboratively with families, federal, state, and local agencies to provide technical assistance, information and personnel training. NCDB brings together the resources of three agencies with long histories of expertise in the field of deaf-blindness. Consortium partners are: The Teaching Research Institute (TRI) at Western Oregon University, Helen Keller National Center, and Hilton/Perkins Program, Perkins School for the Blind.
800-438-9376: Voice
800-854-7013: TTY
503-838-8150: Fax
info@nationaldb.org - North Dakota Department of Public Instruction
- www.dpi.state.nd.us
This site includes information about programs and services, resources, grants, state standards, and education legislation.
Dr. Wayne Sanstead, State Superintendent
600 E. Boulevard Ave., Dept. 201
Bismarck, ND 58505-0440
701-328-2260: Voice - North Dakota School for the Deaf
- www.nd.gov/ndsd/
Through a caring, nurturing, 24-hour residential and academic program and through outreach programming, the North Dakota School for the Deaf provides educational and social opportunities that assist all students to their fullest potential. Emphasis is placed on meeting the unique needs of each child, fostering positive values, good health, and community involvement, and encouraging each student to view learning as a lifelong endeavor in an ever-changing world.
The School for the Deaf has provided information, materials, assistance and support services to deaf and hard of hearing students and the citizens of North Dakota since 1890. Material resources include brochures, videotapes, a professional library, a depository of captioned videos, curriculums and assistive devices. Outreach/Parent-Infant services are the Family Learning Vacation, summer camps, tours and inservices and deaf awareness. Consultations and assessments are provided in audiology, psychology, speech, language, and sign language. Sign language instruction is also provided.
1401 College Dr.
Devils Lake, ND 58301
701-665-4400: Voice
carol.lybeck@sendit.nodak.edu - North Dakota Vision Services School for the Blind
- www.ndvisionservices.com
The North Dakota Vision Services/School for the Blind's mission is to function as a statewide comprehensive resource offering expertise in vision specific related areas (i.e., orientation and mobility, Braille, Braille music, daily living skills, technology, vocational, recreation and leisure), for persons of all ages by enhancing the local programs and working cooperatively with related agencies in providing a full range of services to all persons who are blind or visually impaired, including those with multiple disabilities.
500 Stanford Rd.
Grand Forks, ND 58203
701-795-2721: Voice
800-421-1181: Voice
csuminski@nd.gov - Perkins School for the Blind
- www.perkins.org
175 North Beacon Street
Watertown, MA 02472
617-924-3535: Voice - Sense
- www.sense.org.uk
The world's largest organization working and campaigning for Deaf-Blind people, their families, and professionals who work with them.
Other Useful Links
- Big.com
- A new search engine developed to deliver search results to users in a large, easy to read format-the Big.com Web Magnifier is available immediately. Available from www.big.com/toolbar/ as a free, downloadable toolbar for use with Internet Explorer web browsers, Web Magnifier provides users with the ability to enlarge the text and graphics of any HTML web page for easier reading and navigation. The trend of decreasing font sizes in web design has made navigating the web an increasingly difficult task for many Internet users.
- Tot's-N-Tech
- Do you have a child under the age of 3 who uses Assistive Technology? Tot's-N-Tech is conducting a survey of AT use and training. Please consider completing the online parent survey on the website.
- The Family Center on Technology and Disability
- The site has online discussions, links, and free information. You can receive a free 'Family Information Guide to Assistive Technology' and CD-ROM titled '2005 Assistive Technology Resources.' In August, a free 'Family Transition Information Guide' will become available.
- Healthy Start, Grow Smart
- The Healthy Start, Grow Smart outreach campaign is an activity of the Centers for Medicare and Medicaid Services (CMS), at the request of First Lady Bush. The series of booklets provides important health care information relative to key developmental points of the first months of a child's like. The series is available in English or Spanish. TO ORDER; Contact Dee Raidel in the Denver Regional Office of CMS. Mondays through Thursdays (303) 844-2682; Fridays (303) 722-0922 or email dee.raisl@cms.hhs.gov
- The American College of Medical Genetics
- The college recommends a significant expansion in the number of conditions targeted by newborn screening programs. In this commentary a more cautious approach is explained and advocated for. American Academy of Pediatrics: Newborn Screening Technology: Proceed With Caution (268kb pdf)
- Cornell University's Person Centered Planning Education Site
- On this site, you will find an overview of the person-centered planning process, a self-study course covering the basic processes involved, a quiz section to help you focus on areas you may need to cover more thoroughly, a compendium of readings and activities for you to use on your own, and various links and downloadable resources.
- Enabling Devices Newsletter
- Education of Children with Disabilities. You can find out how your State is doing generally and by disability at: www.ed.gov/about/reports/annual/osep/2003/25th-vol-1-sec-2.pdf (810kb pdf)
- National Sibling Consortium SURVEY
- We know surprisingly little about the relationship between individuals with disabilities and their adult siblings. To better understand this long-lasting relationship, the National Sibling Consortium and the Vanderbilt Kennedy Center for Research on Human Development has created the "Adult Sibling Questionnaire" for anyone age 18 or over with a sister or brother with disabilities. The questionnaire should take 20-25 minutes to complete, all answers are anonymous, and participation is voluntary. A summary of the results of the questionnaire will be provided to those who request it. In addition, the findings will be presented at The Arc National Convention, October 12-14, 2006 in San Diego, and in The Arc's newsletter, InSight, and other publications and scientific journals. If you are 18 years of age or older and have a brother or sister with disabilities, please participate! The online version of the questionnaire is at kc.vanderbilt.edu/FamilyResearch. Paper copies are also available. Call or email your contact information (Name, Address, City, State, Zip) to: Family Research phone: 1.888.322.5339 [free] or email FamilyResearch@vanderbilt.edu
- Using TANF for Early Childhood Programs
- Source: CLASP - May 10, 2006 Using TANF for Early Childhood Programs by Mark Greenberg, Danielle Ewen, and Hannah Matthews. In recent years, states have made significant investments in pre-kindergarten programs in order to help young children enter school ready to learn. Federal Temporary Assistance for Needy Families (TANF) funds are among the sources states have tapped to support some or all of their early childhood initiatives. This brief outlines when and how states can use TANF funds to support early childhood programs, and examines the impact of TANF changes included the 2006 federal budget (called the Deficit Reduction Act of 2005) on this use. Available at: www.clasp.org/publications/tanf_early_childhood.pdf (56kb pdf)
- New Manual on Improving Child Developmental Services in Primary Care Practices
- By improving their office systems, pediatric practices can offer better developmental care to the children and families they serve. A new manual, A Practical Guide for Healthy Development, has been developed by the Healthy Development Learning Collaborative, a 12-month quality improvement initiative, to give offices step-by-step guidance on how to revise their office systems. The initiative was designed to help primary care practices in Vermont and North Carolina engage families in a partnership to promote positive developmental outcomes for the families' children. For more information go to: www.cmwf.org/tools/tools_show.htm?doc_id=372065&#doc372065
- The State of America's Children 2005
- This special edition of The State of America's Children takes a close look at 37 million people living in America who are poor (including 13 million children) and the growing numbers of families struggling to survive. It includes the most recent (September 2005) U.S. poverty data; personal stories; in-depth analyses of the current status of family income, child health, child care and early childhood development, education, child welfare, and youth development; policy success stories; and recommendations for just treatment for children and poor families. For more information go to: cdf.convio.net/site/DocServer/Greenbook_2005.pdf?docID=1741
- National Center on Secondary Education and Transition
- What does Health Have to Do with Transition? Everything! What does Health Have to Do with Transition? Everything! Introduction Adolescence is a time for dreaming-for youth to imagine and set a course for the future. High school students naturally spend time imagining the future-if and where to continue their education, to find a job or pursue a career, to move away from home, or to start a family. The Individuals with Disabilities Education Act (IDEA) includes a process to help youth with disabilities turn their dreams into reality. This Parent Brief provides information on the benefits of and strategies for including health in the Individualized Education Program (IEP) process.
- Golden Access Pass
- Gives Families of Children with Permanent Disabilities Free Access to U.S. Parks. Golden Access Pass Gives Families
of Children with Permanent Disabilities Free Access to U.S. Parks, Monuments, Historical sites, Recreation Areas, and
National Wildlife Refuges.
The Federal Government offers citizens who are blind or permanently disabled (deafness qualifies) a free pass to national parks, monuments, historical sites, recreation areas and national wildlife refuges that charge an entrance fee. The Gold Access Passport is a lifetime entrance pass providing admission to the pass holder and everyone in a private vehicle (if the park offers a per vehicle entrance fee.) The passport also gives a 50% discount of fees charge for facilities and services such as camping, swimming, parking, boating and tours. It also works for sites managed by the U.S. Fish and Wildlife Service, the U.S. Forest Service the Bureau of Land Management, and the Army Corps of Engineers. The pass must be obtained in person with proof (such as an audiogram) of the disability. The card is available at most national parks, federal recreation areas and Army Corps campgrounds. - New Report Finds Evidence That Newborn Screening Saves Costs, And Not Just Lives
- In a new study conducted by Dr. Stephen M. Downs and Dr. Aaron E. Carroll of the Indiana University School of Medicine, the researchers recommend a national uniform panel of newborn screening tests which they found to save costs as well as save lives. For the past 40 years, all U.S. states and territories have mandated newborn screening for certain disorders that may not otherwise be detected before a developmental disability or death occurs. The number of disorders tested range from less than 10 in Texas to 53 in the District of Columbia. Dr. Downs and Dr. Carroll weighed the cost of testing, the cost of treating the disorders, and the cost to society if the conditions were not treated early. "The results of our cost analysis surprised me. The conditions we are testing are rare but the impacts of these diseases are so enormous that it clearly offsets screening costs," says Dr. Downs.
- The EPSDT and Title V Collaboration to Improve Child Health
- A web-based tool designed to help Medicaid and state maternal and child health (MCH) agencies identify opportunities for working together to ensure children's access to and receipt of the full range of Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program services. The Web site was developedby the Health Resources and Services Administration's Maternal and Child Health Bureau in partnership with George Washington University's Department of Health Policy. The Web site provides information about how Medicaid's EPSDT program works with public health, families, managed care organizations, pediatricians, and other health professionals to finance appropriate and necessary pediatric services. Information about the role of MCH programs in fulfilling the potential of EPSDT, family support strategies, data monitoring, and policy and legislative issues is also included.
Other Activities, Opportunities and Information
- Childproofing and Preventing Household Accidents
- Is Your Home Safe? Although many people usually think of babies and toddlers when they hear the words "babyproofing" or "childproofing," unintentional injury is the leading cause of death in kids 14 years old and under, with more than a third of these injuries happening at home (also available in Spanish).
- Inside the Autistic Mind
- A wealth of new brain research - and poignant testimony from people who have autism - is lifting the veil on this mysterious condition.
- Q and A on How Changes in Environmental Conditions Can Temper Effects of a Child's Predisposition Toward Fearfulness and Anxiety
- Source: National Scientific Council on the Developing Child - Retrieved May 12, 2006
- Surviving a Doctor's Appointment
- Here are the thoughts and wisdom of a young adult with special health care needs. This interesting article is followed by a list of links to excellent resources for youth. It is written by a member of KASA (Kids as Self Advocates), a national organization lead by youth and young adults with special health care needs and disabilities.
- Childcare for Children with Complex Medical Needs: Linking the Medical Home
- Medical Procedure Story Books: Going To Get Blood Drawn and Going To The Doctors
- Parents can download these e-books at no cost. HANS is currently developing a series of these stories including: Getting an X-Ray, Getting a cast, Getting an Intravenous drip, Visiting the ER Getting stitches, etc.
- Autism Every Day
- A new film Link: Autism Speaks, Get Involved, Our Events, Upcoming Events, Autism Every Day. Autism Every Day is a new film produced by Lauren Thierry and Jim Watkins of October Group and Eric Solomon of Milestone Video. The film was screened at A New Decade for Autism, a fundraising event held May 9, 2006 in New York City, and subsequently broadcast by Don Imus on his show on MSNBC. Visit the link above to view the film (requires WindowsMedia Player).
- Bike Safety 101
- It's a beautiful day and the kids are home from school. It's a perfect day for a family bike ride, right? Read this article to find out why bicycle safety is so important and what you need to know to keep your kids safe.
- All About Asthma
- Did you know that asthma is the number-one reason for kids chronically missing school? If your child has asthma, you're not alone. Find out how to take control of your child's asthma in the Asthma Center.
- Alex: The Fathering of a Preemie
- A 21-ounce special-needs preemie's first five years of life, written by the father.
- Choosing Relationships
- A curriculum teaching people of all abilities to create relationships and make safe, responsible choices about sexuality. Issues include self-esteem, personal space, choices and consequences, appropriate social behavior, abuse prevention and sex education.
