Innovative Practice 2018 on Accessibility

‘How-To’ Guides and Resource Directory for parents and caregivers

Exceptional Lives is a non-profit organization based in Massachusetts, USA. The organization has developed an online IT platform that provides tens of thousands of parents and caregivers with the personalized information needed when navigating disability-related processes, such as applying for to public benefits and identifying other services for children and young adults with disabilities. As of August 2017, the IT platform has expanded to the state of Louisiana, with other U.S. states to follow.

“An amazing compilation of disability services information with ease of navigation.”

Parent UserUnited States
About the practice at a glance
Name of Innovative Practice:‘How-To’ Guides and Resource Directory for parents and caregivers
Organisation:Exceptional Lives, Inc.
Country
of Implementation
USA

FACTS & FIGURES

  • Exceptional Lives, Inc.

PROBLEMS TARGETED

There is a large gap in filling the information needs of parents of children with disabilities. These families face complex medical and educational choices, and must navigate extremely complex processes to get the services, benefits, and education that their children need Furthermore, caregivers are often unaware of the government and community programmes that exist to help them and their children. Critical information is often complicated and only available by phone during limited hours, doctors are rarely able to lead families to the information that they need and can understand..

SOLUTION, INNOVATION, AND IMPACT

Exceptional Lives provides free, easy-to-follow information for parents and caregivers of children and young adults with disabilities, as well as professionals working with this population. The IT platform offers of a series of free personalized,“How-to Guides”- using a unique decision tree software that allows parents to be interactive and limits the information to only what the family needs. The Guides are accessible through any web-connected device, A screen capture of the guide complete the Child Disability Reportincluding mobile phones, and include alternative text to ensure access to all persons with disabilities. The step-by-step Guides walk users through processes such as how to obtain Supplemental Security Income (SSI) cash benefits and how to access early intervention, health insurance, or Medicaid – a U.S. Government health programme.. The platform also offers a searchable Resource Directory and a help service through email, or phone.
To keep the IT platform up to date and gain a better understanding of what parents need, Exceptional Lives hosts focus groups and distributes ponline surveys . Additionally, the software collects data that allows the organization to target guide improvements but also identifies how the dekivery of programs, benefits, and services can be enhanced – data that is later shared with the appropriate government agencies.

OUTLOOK, TRANSFERABILITY AND FUNDING

The software and personalized Guides are well suited for adaption and any region where people have access to the internet. In August 2017, Exceptional Lives launched a new platform in Louisiana, and expansion into other states is possible in the future.
The Exceptional Lives IT platform is funded through private investors and grants from foundation such as the Alden Trust (a foundation that focuses on education), the Butler Foundation (a U.S.-based charitable foundation that supports life-enhancing opportunities for at-risk and underserved individuals and families), and the Baton Rouge Area Foundation (a community foundation dedicated to enhancing the quality of life in Louisiana’s capital region).
A screen capture of the available early intervention locations.
FACTSHEET

Download factsheet as accessible Word
download

VIDEO

Watch Video of the Zero Project Award Ceremony
download