By 2005, Online Advocates Project could help 500,000

Bob Heinemann learned about state bureaucracy the hard way—by navigating it with his wife after taking in their eight-week-old grandchild, Jessica, who suffered from Shaken Baby Syndrome.

That was 11 years ago.

Today, he’s able to click on www.TheDesk.info, the nation’s first Web site created by the Medicaid Reference Desk. The site, made up of advocates and consumers, provides an online “road map” to critical consumer information about government-funded health services.

On national basis, more than half a million people with disabilities rely on Medicaid for services including residential alternatives, therapies, assisted technologies, and specialized medical care.  Heinemann, who serves on the Oklahoma Developmental Disabilities Council, helped refine, and define, the content for The Medicaid Reference Desk along with people who have developmental disabilities.

“It’s simplistic—a place you can go to for plain language,” said Heinemann, who is a forester at Oklahoma State University.  “If we had a place like this Web site, we could’ve gotten some clear, concise facts to lead us in the right direction.”

The Medicaid Reference Desk, a Project of National Significance of the Administration on Developmental Disabilities, now explains Medicaid in California, Colorado, Iowa, Maryland, Montana, New Hampshire, New York, Oklahoma, Oregon, South Carolina and Wisconsin.

“Our idea was to put together a coalition of stakeholders, all who had an interest in getting high-quality information,” said Steven Eidelman, executive director of The Arc of the United States, which received the grant after researching the need for an online directory to unravel the mysteries of Medicaid.  In addition to The Arc of the United States, project partners include TheArcLink Incorporated, Oregon Health & Science University, AIMMM (Advancing Independence, Modernizing Medicare and Medicaid) and Oklahoma People First.

The partners joined forces to design the site and hope to launch similar online resources in all states by 2005.  “We wanted the power of the Internet to give people reliable, easy-to-understand information,” Eidelman said.

TheArcLink Incorporated, a nonprofit based in Bloomington, Indiana, organized the unique consumer project, which could eventually serve the needs of more than 500,000 people with disabilities nationwide.  A sister Web site, www.TheArcLink.org, also links to a nationwide database of other related information, including services and providers.

“The site was crafted by people served by the system,” said Elbert Johns, project coordinator and president of TheArcLink Incorporated.  Nearly two years of planning went into the project, which provides both audio and video explanations of Medicaid.  The easy access is critical to its success since so many people with developmental disabilities are unable to read, he said.

Heinemann’s granddaughter relies not only on Medicaid, but she also needs services provided by five different state agencies.  The 11-year-old is blind, has cerebral palsy, and other significant disabilities.  She cannot speak and has seizures.

Heinemann said people with severe impairments also are able to access and navigate the Web site with some assistance.

Nancy Ward, one of the featured speakers on the Web site who has an intellectual disability, said the content is geared to an elementary reading level—offering availability to a wide audience.

“It will make services accessible,” said Ward, who is the self-advocacy coordinator for Tulsa-based Oklahoma People First, a 500-member advocacy group with 13 chapters.  “It has pictures and words.”

One of the more distinct features of the site includes buttons that allow the viewer to click on “Hear It” or “See It.”  Ward offers many of the video explanations of Medicaid definitions, lending a real voice and face to the struggles of those with cognitive learning disabilities.  When the team finishes the current phase of the project in August, all 600+ service description and key terms will have the audio and video explanations. 

“I have a learning disability,” said Ward.  “I get frustrated easily.  Sometimes, it’s easier to see what a person with a physical disability wants.  If that person is stuck in front of a door in a wheelchair, you can see that and help them.  But it’s hard for people to understand how to support me.  We want everyone with a disability to know about the ways that Medicaid can help them be more independent and get the services they need to live in the community.”  Ward has a key role in checking that the site is person-centered and respectful of people with disabilities.

Consumers can go to www.TheDesk.info to find out about the different services in each state and the eligibility for services.  The history and background of Medicaid is also available.

One of the biggest challenges was to put complicated Medicaid information into everyday language.  From the start of the project, the team agreed that understandable and people-friendly information is an important goal.  Team member Laurie Powers with the Oregon Health & Science University Center on self-Determination  said, “We want this site to really work for people with disabilities.  We’ve built in lots of ways to do this.”

Features include larger type and links to other helpful websites and resources.  Each state has a listing for “how to get help in your state”.  Although this is not an official Medicaid Office site, the team has worked with human resource agencies in each state to help make the information accurate.

Medicaid is the largest source of funding used by people with disabilities, yet many people find it confusing.  While not all the detail about these important services is on this site, it helps point people in the right direction.  Ward says, “We want people to know what services are available and where to go to find out more information.  Being armed with knowledge makes people better self-advocates.”  

You can get to this site by going to www.TheDesk.info

NOTE: Please feel free to distribute this information freely.  For more information contact Elbert Johns, TheArcLink Incorporated at 1-877-431-8532, or Steve Eidelman, The Arc of the United States at 301-565-5468.  Postcards are also available for distribution.  Call in your request to 1-877-431-8532.

The Q & A sheet below was written by Nancy Ward, Self-Advocacy Coordinator, Oklahoma People First.

Q & A on TheDesk

What is www.TheDesk.info?

TheDesk.info is the nation’s first online Medicaid reference desk created by advocates and consumers.  Medicaid is the largest source of funding for people with disabilities and those who provide their care.  It is often the only source of financial assistance for health care.  But Medicaid is extremely complicated.  Often, people have trouble figuring out governing policies and laws that determine eligibility.  TheDesk.info is an accessible site, geared to people with cognitive disabilities.  The content for this Web site was tailored with the assistance of people who are in the Medicaid system.

Who will find the information posted here helpful?

The online reference desk will be helpful to several communities—from providers who manage group homes to people who are developmentally disabled.  Families, advocates, legislators, policy makers, and state officials will find the site a valuable reference on a variety of topics.  TheDesk.info will also serve as an educational tool for the public.

Can the site help me determine if I am eligible for Medicaid?

The site cannot help determine your eligibility for Medicaid funds.  But it does provide a list of eligibility standards in easy-to-understand terms.  TheDesk.info is not meant as a replacement for contacting service providers or state officials.  Rather, it can guide you to additional sources of help and information in Oklahoma.

Who helped design the site?

People with developmental disabilities tested the site.  I was one of the original testers.  You’ll also see me on this Web site.  We have installed unique features that allow a person to both see, and hear, an explanation of Medicaid terms.

Can I share this information with a friend in another state, or is the content only geared toward programs in Oklahoma?

We hope to add more states as the project grows.  The project is mostly funded by a federal grant.  In the first phase, at least 11 states will be part of the project.

For more information, check out www.TheDesk.info.