AssISTIVE TECHNOLOGY FOR p ARENTS WITH DISABILITIES A Handbook for Parents, Families and Caregivers Promoting successful parenting through access to technology for Idaho's parents with disabilities Acknowledgments This handbook was written and compiled by the Idaho Assistive Tech­ nology Project. We wish to thank the Idaho State Independent Living Council (SILC), RESNA, Through the Looking Glass, Parents with Dis­ abilities Online, and the North Dakota Interagency Program for Assistive Technology for technical information and research supplied for prepara­ tion of this document. Special thanks and commendation to Kelly Buckland of SILC and to the 1999 Committee for Fathers and Mothers Independently Living with their Youth (FAMILY). Illustrations by Sarah Moore, Sue House and Martha Perske Design by Jane Fredrickson Purpose of Handbook This handbook was developed to provide information about assistive technology for Idaho families in which one or both parents have a dis­ ability. It provides information about legislation, availability of assistive technology to assist with parenting, funding avenues, and resources for parents with disabilities. The Idaho Assistive Technology Project is Contract #H224A20017 with the National Institute on Disability and Rehabilitation Research (NIDRR). Written and compiled by LaRae Rhoads and Ron Seiler Idaho Assistive Technology Project Center on Disabilities and Human Development University of Idaho Moscow, Idaho 83844 April 2003 TABLE OF CON T EN T S Inside front cover Acknowledgments Inside front cover Purpose of Handbook 3 I. The Importance of Assistive Technology for Parents with Disabilities 4 What Is Assistive Technology? 5 Legislation Related to Assistive Technology and Individuals with Disabilities 6 National and State Research Statistics on Parents with Disabilities 7 Policy Change in Idaho Code 8 The Parent Support Project 9 Idaho Child Protection Bill of 2003 11 II. Examples of Assistive Technology (AT) for Parents with Disabilities 11 Possible Areas of Need for Assistive Technology (AT) 12 Assistive Technology for Parents with Physical Disabilities 21 Assistive Technology for Parents with Cognitive Disabilities 24 Assistive Technology for Parents with Sensory Disabilities 27 Computers and Computer Access 28 Switch Technology: A Key to Access and Independence 30 Universal Design for Learning and Electronic Information Access 31 Home Modifications 43 III. Guidelines for Selecting Assistive Technology (AT) for Parents with Disabilities 43 The Assessment Team 44 The Needs Assessment and the Assistive Technology Evaluation 47 IV. Acquisition of Assistive Technology for Parents with Disabilities 47 What Is Advocacy? 48 Training for Parents with Disabilities, Families and Care Providers 49 V. Funding Assistive Technology (AT) for Parents with Disabilities 49 Guidelines for Developing a Funding Request 53 Major Funding Sources for Assistive Technology 57 VI. Assistive Technology (AT) Resources for Parents with Disabilities 57 Idaho State Agencies, Organizations and Resources 64 National Organizations and Conferences 68 Books, Catalogs and Publications 71 Electronic Resources and Web Sites 77 VII. References ASSISTIVE TECHNOLOGY FOR PA RENTS WITH DIS A BILITIES 1 2 ASSISTIVE TECHNOLOGY FOR PA RENTS WITH DIS A BILITIES THE IMPOR T AN C E OF ASS I S ti VE TE C HNOLOGY FOR PAREN T S W it H DI SAB I L iti ES I Parents with disabilities have the same universal goals and desires for their children as other parents. They want to provide their children with a loving, safe home and to participate fully in their children’s daily lives. They want to prepare meals, help with homework, and play games with their children. An emerging resource for parents with disabilities, who are attempting to maintain their families, is assistive technology devices and services. Assistive technology redefines what is possible for parents with disabilities who are striving to protect, care for and improve the safety, health, and well-being of their children. Devices for diapering, play, feeding, mobility, safety, and hundreds of other commercially available devices can increase the ability of parents with disabilities to provide a loving and nurturing home. However, in Idaho (and no doubt elsewhere), families in which one or both parents have a disability face significant barriers to the acquisition of assistive technology. Publicly funded agencies such as Medicaid, Voca- tional Rehabilitation, and schools, typically fund devices that can be used for medical, vocational, or educational purposes, but will not always fund devices that are strictly used for “parenting”. As a result, many families who could benefit from using these devices do not have access to them. Barriers to the acquisition of assistive technology faced by parents with disabilities are listed below. ■ Lack of funding for adaptive technology; ■ Lack of commercially available adaptive parenting devices; ■ Lack of needed experience and training for Idaho’s service providers to meet the unique technology-related needs of parents with disabilities; ■ Lack of adaptive equipment which potentially undermines an appropriate evaluation of parental capability and the parent- infant (or child) relationship. Combined, these barriers are preventing parents with disabilities from obtaining and using assistive technology. ASSISTIVE TECHNOLOGY FOR PA RENTS WITH DIS A BILITIES 3 What Is Assistive Technology? The Technology-Related Assistance for Individuals with Disabilities Act (TECH ACT), defines AT in two parts: assistive technology device and as- sistive technology services. Assistive technology device means any item, piece of equipment, or prod- uct system, whether acquired commercially off the shelf, modified, or customized that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities. Hand brace AT can be simple or complex. The federal definition is very broad and (Universal Design) has been interpreted to include such items as Velcro, adapted clothing and toys, computers, seating systems, powered mobility, electronic com- munication systems, and thousands of other commercially available or home made items. Assistive technology service, as it appears in the TECH ACT, means any service that directly assists a person with a disability in the selection, acquisition, or use of an assistive technology device. Assistive technol- ogy services include: a. evaluating the technology needs of an individual with a disability, including a functional evaluation of the individual in his/her custom- ary environment; b. purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices for individuals with disabilities; c. selecting, designing, fitting, customizing, adapting, applying, retaining, repairing, or replacing assistive technology devices; d. coordinating and using other therapies, interventions, or services with assistive technology (AT) devices, such as those included in the Individualized Educational Plan (IEP) or the Individualized Written Rehabilitation Plan (IWRP), associated with existing education and rehabilitation plans and programs; e. training or technical assistance for an individual with a disability or, if appropriate, that person’s family; and, f. training or technical assistance for professionals including indi- viduals providing education services, or other individuals who provide AlphaSmart portable word services to, or are otherwise substantially involved in the major life processor (for input only) functions of a person with disabilities. Assistive technology (AT) is not provided by law to parents with dis- abilities for the purpose of parenting; however, an individual with dis- abilities may receive AT for the purpose of gaining independence, or for educational, medical, and vocational purposes. If a child in the family also has a disability, the evaluation team must give consideration to the AT 4 ASSISTIVE TECHNOLOGY FOR PA RENTS WITH DIS A BILITIES needs of the child across his or her educational environment, which may include school, home, and community. Parents with disabilities could benefit from AT devices in a number of ways to assist them in taking an active part in properly caring for their children. Using universally de- signed educational materials and a computer, a blind father could use a “Assistive technology Braille format to help his young child with a science project. A mother with cerebral palsy could use an augmentative communication device to can be designed by discuss a reading assignment with her child. A mother with a cognitive a mother or an engi- disability could use a portable electronic organizer to remind her of the neer.” baby’s feeding schedule. –Hatten Adapted infant/toddler carrier for wheelchair (Malka’s carrier) Legislation Related to AT and Individuals with Disabilities The explosion of assistive technology innovations and practical applica- tions is having a positive impact on the lives of individuals with dis- abilities, regardless of age or disability. Evolving over time, federal and state law has established and broadened the legal support for the use of assistive technology in gaining access to the community and to meaningful employment. However, these laws do not directly address the assistive technology necessary for parenting with disabilities. Federal laws that apply to AT and may have an impact on parents with disabilities are briefly described on page 6: ASSISTIVE TECHNOLOGY FOR PA RENTS WITH DIS A BILITIES 5 Legislation Related