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Parent and Family Resource Guide



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General / Comprehensive Resources

DeafBlind Technical Assistance&;Project

DHHS Family Services &;For families with deaf, deafblind or hard of hearing children, Deaf and Hard of Hearing Services (DHHS) offers services designed to meet the unique needs of parents and guardians in need of support, resources and information. Whether the topic is education, communication, or technology, DHHS staff are available to discuss options for parents and family members so that they can best support the needs of their child.&;

Project SPARKLE: Supporting Parent Access to Resources, Knowledge, Linkages, and Education &;a new model of individualized learning that will enhance the ability of parents of children who are deafblind to fulfill their critical and expanded role in the development and education of their children. Many parents of children who are deafblind currently access information and training through workshops, conferences, and parent retreats. Through Project SPARKLE, parents will have access to information, training, and resources in their homes via the Internet. Project SPARKLE is funded as a model demonstration grant and is currently working with about 60 families in the states of Georgia, , Texas, and Utah.&;

Information on Deafblindness a good overview of deafblindness in children, from Alabama&;s Helen Keller School.

Fact Sheets from DB-LINK, The National Information Clearinghouse on Children who are Deaf-Blind. Topics include Communication, Child Development, Interaction, Orientation and Mobility (&;O&M), Internet Resources, Literacy, Psychological Evaluation, Recreation and Leisure, Sexuality Education, and more.

Articles on Parenting Issues and DeafBlind children Archived articles related to raising a DeafBlind child. From SEE/HEAR, &;a quarterly newsletter for families and professionals on visual impairments and deafblindness.&;

reSources &; newsletter of California Deaf-Blind Services Each quarterly issue has a different theme, such as communication, family support, transition, assessment, employment, sexuality, education, or living options. Available online in PDF format by mail from California Deaf-Blind Services &; call 1-800-822-7884 Voice/TTY for subscription info.

Parent&;s Perspectives on Communication, Behavior, and Instructional Strategies 80 parents of DeafBlind children composed &;a list of the most important practices to parents in the areas of behavioral issues, communication and instructional strategies in the education of their child who is deaf-blind.&;

Through the Looking Glass Find support and information for your family, and envision your disabled child leading his or her own family one day. &;Through the Looking Glass (TLG) is a nationally recognized center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issue. TLG is a disability community based nonprofit organization, which emerged from the independent living movement, and was founded in 1982 in Berkeley, California. Our mission is to create, demonstrate and encourage non-pathological and empowering resources and model early intervention services for families with disability issues in parent or child which integrate expertise derived from personal disability experience and disability culture.&;

&;Hadley has a course for you if you are a blind adult (14+ years of age), a parent or grandparent of a blind child, a family member of an adult who is blind, or a (para)professional in the blindness field. The Hadley School for the Blind offers more than 90 distance education courses to eligible students completely free of charge.&; Current course listing, and is also available by mail in alternate formats. See especially the Family Education Program courses on parenting, early childhood, Braille for family members, and more. Designed to focus blind and visually impaired people, but many of the courses can be helpful to DeafBlind people and their families.

State Resources List List of resources for adults and children with all types of disabilities, compiled by the National Information Center for Children and Youth with Disabilities

Sign Language Associates, Inc. (SLA) An interpreter referral service. Offers a &;Manual for Parents of Deaf-Blind Children,&; but is not currently online. Contact SLA for further information.

V. I. Guide &;A guide to internet resources about visual impairments, for parents and teachers.&;

Deaf and Hard of Hearing Services Division &; Services and Resources for Consumers

&;Whether you are culturally deaf, oral deaf, late deafened, hard of hearing, deafblind, or a friend, coworker, or family member of a person with hearing loss, you’ve come to the right place. Here you can find information about services designed to meet your needs. Learn about assistive technology, sign language interpreters, your legal rights, and more.&;

Letter of Intent: A Way to Communicate Your Wishes into the Future Description: &;Every parent&;s concern: What will happen to my child if I am not able to care for him?… A Letter of Intent is a document that you prepare to help the guardians, trustees and the courts interpret your hopes and desires for your child.&; Children&;s Books About Disabilities Grouped by age group/grade level, these books help siblings and classmates understand what it is like to live with a disability.

Diagnosis / Identification of Dual Sensory Impairment

See also What are the Causes of DeafBlindness? on our FAQ page.

Newly diagnosed young person in your family? Contact the DeafBlind Technical Assistance Project

Psychological Evaluation of Children who are Deaf-Blind: An Overview with Recommendations for Practice &;answers to frequently asked questions about psychological evaluations for infants, children and adults who are deaf-blind, … evaluation process and the active roles that may be taken by everyone who is involved—family members, professionals, educators, and the student … quality indicators and desired outcomes, &;ways to view and use the evaluation process so it will benefit the student to the greatest degree possible.&;

Assessment Resources for Vision and Hearing &;a variety of assessment tools which we hope will help parents and educational staff gather functional information that may then be shared with these doctors to aid them in making a definitive determination of hearing or vision loss. These materials include those which will: guide observations and organize that information to share with medical staff; expand the range of questions to explore with the professionals to get good testing results; and help prepare the student for more formal testing procedures. Additionally, we have included materials which will aid the educational staff in determining modifications to improve programming for the child in the classroom.&;

Sight & Hearing Association

&;nonprofit organization dedicated to preventing the needless loss of vision and hearing through effective screening, education, and research. This site provides public information about vision and hearing topics as well as information regarding our products and services.&;

Newborn Hearing Screening (NHS) Program &;Offers low-cost, reliable and valid early identification of deaf and hard of hearing children [shortly after birth]. Tracks hearing screening, evaluation, and intervention for children 0 to 5 years old with hearing loss, integrating with mandated Newborn Metabolic Screening (NMS) data system and MDH Infant Follow Along Program (FAP) for children and families in need of services.&;

Hearing Loss Simulator Provides a way for hearing parents to get a general idea of what the world may sound like to their child, based on his or her audiogram pattern. Please note auditory perception varies across individuals; two people with the same audiogram on paper may experience sound differently.

Deaf/Hard of Hearing Terms and Definitions &;some terms and their definitions that you may come across as you learn about deaf and hard of hearing issues.&;

Program for Infants and Toddlers with Disabilities &;an interagency, family-centered program for infants and toddlers with disabilities, ages birth to three, and their families… Helps to keep children with disabilities with their families instead of in institutions, and provides supports necessary to keep families together and to increase the child&;s potential for living independently in later years. An interagency team, including the family and providers, develops an Individualized Family Service Plan (IFSP), which is the heart of early childhood intervention.&;

Children&;s Services

&;We oversee adolescent services, adoption, child protection, children’s mental health, foster care, Indian Child Welfare and other child welfare services in .&;

Child Development

See also How do DeafBlind people get around? and The Importance of Orientation And Mobility Skills For Students Who Are Deaf-Blind

Talking the Language of the Hands to the Hands &;It is important to understand what role the hands play in typical development, and in the development of children who are blind and children who are deaf. This understanding will help educators, parents, and friends interact as skillfully as possible to facilitate the development of the hands of the person who is deafblind.&; Also available in Spanish and in German.

National Transition Follow-Up Study of Youth Identified as Deafblind: Parent Perspectives &;the first research initiative to thoroughly explore the post-school life of youth who are deaf-blind… regarding communication, sensory status, mobility, health, and problem behaviors, &;secondary school experiences, especially regarding services and supports, work experience, and transition planning… &;

John Tracy Clinic Correspondence Learning Program for Parents of Young Deaf-Blind Children Main page: http://www.jtc.org &;… an individualized program consisting of twelve basic Lessons covering family relationships, information about deaf-blind children and ways of communicating, and a series of Learning Steps in seven areas of development. Through initial information provided by the parent, an individual lesson is assembled to meet the needs of each family. Depending on the ability and age of each child, and the amount of time parents can devote to the lessons, it takes one to two years to complete the program.&; Also available in Spanish.

Strategies to promote early eating skills &;This article provides advice on practical ways to develop effective eating skill in deaf blind children who are functioning at a developmental levels below twelve months.&;

Health and Wellness Program &; Regions Hospital Psycho/Social Assessment Program for Children and Youth

&;A service that provides no cost specialized psychological and social assessments, family assessments and school and family consultation and training to benefit deaf, deafblind and hard of hearing children ages 0 to 21 and their families outside the seven county metro area.&; Note: Part of the Health and Wellness Program Serving Deaf and Hard of Hearing People at Regions Hospital in St. Paul, MN, which serves adults, children, and families in the Twin Cities area.

Overview of the Van Dijk Approach &;a developmental inter-relationship exists between the neurological state of the sensory deprived child and the external influences of the child&;s environment. And it is that inter-relationship that leads the child out of a closed, limited world of interaction to an open, functional world of interaction.&;

Note: See also &;Dr. J. van Dijk Materials&; section at the end of DB-LINK Selected Topics

Sensory Integrative Dysfunction in Young Children &;Sensory integration… is the ability to take in information through senses (touch, movement, smell, taste, vision, and hearing), to put it together with prior information, memories, and knowledge stored in the brain, and to make a meaningful response… This article will explain ways of addressing sensory integrative problems within the context of family life and the child&;s normal activities.&;

Repetitive Behaviours In Children With Sensory Impairments And Multiple Disabilities &;Many children with sensory impairments and multiple disabilities show repetitive or stereotyped behaviours &; for example, rocking, head shaking, mouthing objects or repeating sounds… [This article is about] roles which repetitive behaviours may play in children&;s development and the ways in which educators interpret and respond to them.&;

Language Planning

Communication Interactions: It Takes Two &;What is communication? How can we increase communication? What can you do?&; (strategies for communication interaction)

Early Interactions With Children Who Are Deaf-Blind &;ways you can interact with your young child, … giving your child consistent sensory cues, … ways you can recognize and then respond to your child&;s responses, … encourage exploration of the environment … playing simple games that are not only fun but also help develop interaction and communication.&;

Tactile, Sequential Communication Strategies &;working with and playing with and interacting with deaf-blind DD [developmentally delayed] folks who don&;t necessarily have a formalized language system and some ways to start establishing some concrete communication.&;

Project SALUTE &; Successful Adaptations for Learning to Use Touch Effectively &;&;addresses the unique learning needs of children who are deaf-blind, who have severe visual impairments, and require a primary tactile mode of learning… The web site includes articles, a bibliography, links to other sites, and information sheets on a number of topics, including Tactile Strategies, Cues, Symbols, Signs, and Working with Spanish-speaking Families.&;

Communication at Home and in the Community Description: &;Helpful Strategies & Suggestions From Parents & Families With a Child Who Is Deaf-Blind.&;

Expressive Communication Fact Sheet Includes information on deafblind child development. From DB-LINK.

Receptive Communication Fact Sheet &;How [deafblind] children understand your messages to them, tips for sending effective messages, communication milestones, design a program for your child.&;

Hands & Voices International &;a parent driven, non-profit organization dedicated to providing unbiased support to families with children who are deaf or hard of hearing. We provide support activities and information concerning deaf and hard of hearing issues to parents and professionals that may include outreach events, educational seminars, advocacy, lobbying efforts, parent to parent networking, and a newsletter. We strive to connect families with resources and information to make informed decisions around the issues of deafness or hearing loss.&;

Communication Choices

a concise and unbiased explanation of how to choose a communication method for a child with hearing loss, with brief descriptions of American Sign Language, Auditory-Oral, Auditory-Verbal, Bilingual Education, Cued Speech, Simultaneous Communication, and Total Communication. Site includes extensive lists of books and videos.

Book: Choices in Deafness: A Parent&;s Guide to Communication Options, 2nd Ed. Publisher: Woodbine House; ISBN 0-9-85-9; (1996) &;A useful aid in choosing communication options for a child with deafness or a hearing loss. Experts present: Auditory-Verbal Approach, Bilingual-Bicultural Approach, Cued Speech, Oral Approach, and Total Communication.&;

Book: Just Enough to Know Better: A Braille Primer Publisher: National Braille Press; ISBN: ; (June 1988) &;a self-paced workbook… Using your sight, you will learn to identify the braille alphabet, numbers, contractions, and even a few exceptions to the rule that make braille so interesting. One volume print book, with exercises in braille, includes a braille symbols wall chart and braille flash cards.&;

Seedlings Braille Books for Children

&;a non-profit, tax-exempt organization dedicated to increasing the opportunity for literacy by providing high quality, low cost braille books for children.&;

101 Ways to Use Braille

Tack-Tiles&; Braille Systems (Tack-Tiles&; Braille Systems) &;a sophisticated teaching tool for all ages based on LEGO®-type blocks. These Braille blocks provide a unique bridge, a smoother, shorter, more interesting path to Braille literacy.&;

Easy, low-tech ways to use braille in your daily life, even if you only know the basic braille alphabet.

Effective Interaction: Communicating With and About People with Disabilities in the Workplace Clear advice about how to interact with a person who has a visual, hearing, mobility, or cognitive disability.

Educational Rights and Options

See also Disability Rights Laws on our Tools for Independence page.

Health Care Programs and Individualized Education Program (IEP) Services &;materials [that] may help school districts with the Health Care Programs billing and payment system and communication with parents [because] public school districts are required by state law to seek third-party payment for services provided to children who receive special education services through an Individualized Education Program (IEP), Individualized Family Service Program (IFSP), or Individual Interagency Intervention Plan (IIIP).&;

Special Education Mediation Service (MNSEMS) &;provides conflict resolution assistance for students, schools, parents and agencies. Parents and school staff can use a mediation session or a facilitated IEP/IIIP meeting to address issues of concern.&;

Resources for Families Excellent tools and information for parents of children who have low-incidence disabilities (including deafblindness/ sensory impairment). From the National Center on Low-Incidence Disabilities.

IDEA/ADA in Plain Language Annotated links to resources that explain legal rights, especially in educational settings, for people with disabilities.

ERIC Clearinghouse on Disabilities and Gifted Education (ERIC EC)

A comprehensive collection of information and resources about special education, disabilities, and gifted children. Guide to Disability Rights Laws Includes brief summaries and contacts for further information or to file a claim. Parents may wish to gain a firm understanding of special education laws, especially IDEA and the Rehabilitation Act.

Acronyms Frequently Used in Special/Gifted Education A long list from ERIC. &;This list is not comprehensive; it is intended as a quick reference.&;

The Intervener In Early Intervention and Educational Settings For Children and Youth With Deafblindness &;This paper is an effort to discuss important issues, clarify concepts, explain terminology, and answer common questions in order to increase awareness and understanding about interveners and their role in the field of deafblindness.&;

Early Intervention Programs Basics of Early Intervention as defined under the IDEA legislation, where to learn more and get services. Information provided by Lifetrack Resources.

K-12 Educational Options Defines mainstreaming programs, day classes within regular schools, state residential schools for the deaf, and private residential schools. Includes contact information for Twin Cities area schools. Information provided by Lifetrack Resources.

Support and Advocacy

DHHSD DeafBlind Consumer Directed Services Grant&;Program

See also:

General/Comprehensive Resources section above for information about DeafBlind Technical Assistance Project and DHHS Family Services

Self-Determination on our FAQ Page

Consumer Advocacy Groups on our Tools for Independence page.

Wrightslaw: Yellow Pages for Kids with Disabilities A free service to help people &;get reliable information and support [from] many resources &; government programs, grassroots organizations, and parent support groups, … evaluators, educational consultants, academic tutors, advocates, attorneys, and others who help parents get services for their children.&;

National Family Association for Deaf-Blind An aid for families/individuals as they begin their search for resource referrals. Information is listed by state.

reSources Newsletter &; Siblings Issue Fall 2002 issue of reSources, the newsletter of California DeafBlind Services. The topic of this issue is support for siblings of deafblind children. Includes an article written by a teenager who has a deafblind sister, a fact sheet about sibling support, and a list of helpful books. This link is a PDF file.

DeafBlind Pen Pals Directory &; from Sense &;If you&;re feeling isolated or just [want to get] to know someone, our penpals section will help. You can search for people and then contact them electronically for a chat.&;

MUMS: National Parent to Parent Network

&;MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare or not so rare disorder, chromosomal abnormality or health condition. MUMS&; main purpose is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Through a database of over 17,000 families from 52 countries covering over 3000 disorders, very rare syndromes or conditions can be matched.&;

PACER Center

&;The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents. With assistance to individual families, workshops, and materials for parents and professionals, and leadership in securing a free and appropriate public education for all children, PACER&;s work affects and encourages families in and across the nation.&;

Department of Human Rights

&;a neutral state agency that investigates charges of illegal discrimination.&; Web site includes Information about your rights in employment, housing, and other settings, and a very extensive listing of related resources.

Disability Law Center &; Client Assistance Project

free civil legal assistance to individuals with disabilities. Client Assistance Project advocates and mediates for people who have grievances about services from state agencies.

Continuing Care &; Department of Human Services: People with Disabilities &; A primary goal of Continuing Care is to promote independent living for people with disabilities by funding or providing a broad range of residential care and social services close to home communities instead of in institutionalized settings.&; For more information on services in your county, see County Human Services Agencies.

Chemical Health Division

Program for Infants and Toddlers with Disabilities

HIV/AIDS Programs

Mental Health Division

Technology

See also

Assistive Technology and Independent Living Aids information on our Tools for Independence page.

Telephone Equipment Distribution (TED) Program

Interpreter Referral Web Site &;information about sign language interpreters, how to use them and how to find them… created to help ensure that all ns are able to locate needed sign language interpreter services&;

101 Ways to Use Braille Easy, low-tech ways to use braille in your daily life, even if you only know the basic braille alphabet.

Assistive Technology Information about technology for people who are deaf, hard of hearing, deafblind, or have a speech or mobility impairment. Includes assistive listening devices, special telephone technology, relay service, and the telephone equipment distribution program. From the Department of Human Services.

Assistive Equipment and Technology Fact Sheet Definitions and examples of several types of technologies used by people who are deaf, deafblind, or hard-of-hearing. Includes alerting devices, telecommunication devices, assistive listening devices, and captioning. Available online in PDF format, or in other forms for people with disabilitie.

Assistive Listening Devices Covers the basics: What is an assistive listening system?, What does it do?, Who uses it?, Four basic systems, Types of headsets, Types of receivers, How do assistive listening systems work?, Directory of manufacturers and vendors.

Effective Interaction: Communicating With and About People with Disabilities in the Workplace Clear advice about how to interact with a person who has a visual, hearing, mobility, or cognitive disability.

Recreation

See also Self-Determination on our FAQ Page, and Consumer Advocacy Groups on our Tools for Independence page.

Recreation and Leisure Fact Sheet &;practical information on how to get people who are deaf-blind with cognitive disabilities involved with recreational activities. The focus is on recreational activities for pre-adolescent children through adult.&; Includes steps required to develop a recreational plan, examples of recreation activities with different people who are deaf-blind, extensive resource list. From DB-LINK.

Learning to Play or Playing to Learn: Fostering Play Development Patterns in Deafblind Children &;In this article Julia Martín Cuerdo, who is a teacher of deafblind children and Juan José Martínez González, a psychologist in social services, report their work on the importance of play for deafblind children.&;

Yoga for the Deafblind Yoga can be beneficial to people of all ages, abilities, and sizes. &;In this article Dipti Karnad describes the way in which the teaching and learning of yoga is making a real contribution to the lives of deafblind children at the Sadhana Unit for Deafblind Children at the Clarke School for the Deaf, Chennai, India.&;

Tactile Colour an easy system of twelve standardized textures representing twelve colours.&; Can be used for art, play, sensory integration, augmentive communication, maps, greeting cards, jigsaw puzzles, and more. Individuals use the sheet vinyl to make pictures, maps, labeling systems and games. You can to order a free sample color swatch and a color identification chart that lists each textured color with its color name in raised print and grade one braille.

Tack-Tiles&; Braille Systems (Tack-Tiles&; Braille Systems) &;a sophisticated teaching tool for all ages based on LEGO®-type blocks. These Braille blocks provide a unique bridge, a smoother, shorter, more interesting path to Braille literacy.&;

Uncle Goose Toys Sells a variety of toys, including Groovie Blocks (building blocks with tactile decorations), Alphabet Braille Blocks, Braille Math Blocks, Sign Language Braille Blocks, and many other tactile and high-contrast toys.

Toys and Accessories for Children with Disabilities a list of toy companies from the ERIC Clearinghouse on Disabilities and Gifted Education.

Toys, Glorious Toys How to select toys and activities that fit your deafblind child&;s developmental age and abilities. Includes list of resources.

Financial Assistance

&;s Healthcare Programs Description of MA, GAMC and Care: services covered under each plan, eligibility requirements, and how to apply.

Medical Assistance (MA) &; &;s Medicaid Program &;a joint federally/state-funded [health care] program which provides necessary medical services for low-income families, children, pregnant women, and people who are elderly (65 or older) or have disabilities.&; Eligibility requirements, covered services, how to apply. One of &;s three publicly funded health care programs.

MA Waivers: Home Care/Home and Community Based Services (HC/HCBS) Waivers

General Assistance Medical Care (GAMC) &;pays for medical care for some 23,300 low-income ns who don&;t qualify for Medicaid or other state or federal health care programs.&;

Care &;a subsidized health care program for people who live in and do not have access to health insurance. There are no health condition barriers, but applicants must meet income and program guidelines to qualify.&;

Disability Health Options (MnDHO) &;a program for people with physical disabilities who are eligible for Medical Assistance (MA). People who are eligible for both MA and Medicare may also enroll… Every enrollee is assigned a care coordinator who answers questions, helps with paperwork, and helps arrange services.&;

Economic and Community Supports &;The Department of Human Services supervises a variety of economic assistance programs… Most economic assistance (including welfare) programs are administered at local county agencies.&;

Child Support Enforcement Division

Deaf and Hard of Hearing Services Division

Food Stamp Program

Food Stamp Employment and Training (FSET)

General Assistance

Family Investment Program (MFIP)

Food Assistance Program (MFAP)

Supplemental Aid

Refugee Assistance Program

Self-Employment Investment Development Program (SEID)

Telephone Equipment Distribution (TED) Program

Telephone Assistance Program (TAP)

Grants/Funding Information a list of grants and funding for special education and children with special needs, as well as sources of further information. From the ERIC Clearinghouse on Disabilities and Gifted Education.

Post-Secondary Financial Aid advice and resources for students with disabilities seeking funding for college or vocational school.

Directory of Funding Resources for Assistive Technology in

&;information about and national agencies and organizations that fund technology, in a format that lets you compare programs and tells you how to get in touch with people who can help.&; From &;s STAR Program.

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