Understanding the Needs of Families for Assistive Technology Information and Resources

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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

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Key AT Information Points

• The birth of a child
• Developmental lags first noted at 18-24 months
• Pre-school
• First grade
• Post 1st grade onset
• Traumatic injury
• Transition

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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.

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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.

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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

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2004 Organizational Needs Assessment
Basic
Other
School r/r
AT Options
School
AT Options
School r/r
Training
Funding
Funding
AT Eval
AT Eval
Assess
1. Family Info Needs
2. Info Most Difficult to Find
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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 theyre seeking information, theyre part of
  the way there.

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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.

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Ways in Which Families are Different

• Cultural differences influence a familys
  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

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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

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• Knowing how to Advocate
• Being equipped with the right vocabulary and a
  basic understanding of ones 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

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Connecting Organizations and Families with the
Experts
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Thank you for your attention.