Understanding the Needs of Families for Assistive Technology Information and Resources Family Center on Technology & Disability for the NTAC Conference on Assistive Technology April 26-27, 2006

Key AT Information Points The birth of a child Developmental lags first noted at months Pre-school First grade Post 1 st grade onset Traumatic injury Transition

AT Problems Faced by Families Assistive technology terms are unfamiliar. Technology changes relatively rapidly. Funding sources can be difficult to identify and pursue. Regulations for school and government funding sources differ by state. School-related issues may be unfamiliar and intimidating. School systems differ in their desire and ability to be proactively helpful. –Family rights –IEP process –Inclusion decisions –Due process There is a limited supply of AT assessment and evaluation experts nationally, regionally and locally.

AT Problems Faced by Families Training opportunities may be limited, time-consuming and/or expensive. –family members –teachers and other school-based personnel –aides There is often a lack of community support and a sense of isolation. The medical personnel with whom the family deals may not be knowledgeable about AT.

Problems Faced by Organizations that Serve Families Lack of adequate staff (numbers) Untrained staff Lack of assistive technology knowledge Inadequate funds –To send staff to conferences, to network and gain AT knowledge –To produce materials –To purchase subscriptions Staff turn-over; little organizational memory Issues of language and culture Competing priorities Technophobia on the part of some

2004 Organizational Needs Assessment 1. Family Info Needs 2. Info Most Difficult to Find SchoolSchool Assess AT Options Funding Other AT Eval School r/r AT Options Funding AT Eval Training School r/r Basic

Ways in which Families are Alike: At the time of diagnosis, and at pivotal transition points, they are on unfamiliar ground. They care about their children. If they’re seeking information, they’re part of the way there.

Ways in Which Families are Different: Families have different levels of English proficiency. Parents have different levels of education. They may or may not have access to a knowledgeable health care provider Families with financial and educational resources are likelier to have reliable, broad band access to the Internet. Families with insurance and financial resources have far easier access to AT devices and services.

Ways in Which Families are Different: Cultural differences influence a family’s perception of disabilities and its willingness to seek outside assistance. They may or may not have an existing support system Of those who do not have access to a knowledgeable health care provider at the time of diagnosis, families with financial and educational resources are better able to identify and switch providers. Geographic location influences the availability of AT evaluators, AT demo centers and other local resources

Ways in which the FCTD helps Unfamiliarity with AT language AT glossary on the FCTD website AT glossary included in Family Information Guides AT glossary included on AT Resources CD- ROMs Terms discussed and clarified by experts and participants during online discussions and Summer Institute Terms discussed and clarified in newsletters

Knowing how to Advocate Being equipped with the right vocabulary and a basic understanding of one’s rights and of the process Locating PTIs, ATA Centers and parent advocates via the database and links Locating parent support groups Learning how others did it via online discussions and AT success stories

Connecting Organizations and Families with the Experts

Thank you for your attention.