The Squeaky Wheelchair – About Living With A Disability

Disabled Left Behind in Florida

Guest blog by Mike Coonan, President Left Behind in the USA   

In Florida, 21,000 people (mostly children) with a developmental disability, such as mental retardation, autism, cerebral palsy and related conditions are living at home and are waiting for the Medicaid Waiver services.  They have been on the waiting list for the last eight years. Across America, more than 370,000 people (mostly children) with the same conditions are also lingering on similar waiting lists. We are told by our state elected officials that there is no end in sight for ending the Medicaid Waiver waiting lists.

At the same time, many families receiving Medicaid waiver services tell us that they are willing to share these precious resources.  Those of us on the waiting list are thankful for their thoughtful consideration of our plight. Their gracious words of support have encouraged us to work towards a more equitable situation.

To that end, Left Behind in the USA is proposing that the Developmental Disability Community review policy and organizational barriers preventing Medicaid Waiver services and supports from being shared with families in need.  Left Behind in the USA is now on a quest to learn more about the following:

• How the Medicaid Waiver rules can be restructured to allow for the voluntary sharing of support services from families getting services to families on the waiting lists.          For example, if a family is receiving $14,000 worth of Medicaid Waiver services, how            can they share         10% of these services to help someone on the waiting list?
• When the Medicaid Waiver program is restructured to allow for sharing, how do families who are willing to share with those in the greatest need get connected?
• How can we implement this program with virtually no costs?
• Who is willing to help families on the Medicaid Waiver waiting lists obtain more help in Sharing the Blessings?
• Assure that families who may choose to share services do not suffer a reduction in their service level as a result of their generosity.

Our expectation is that the Sharing the Blessings program will benefit thousands of families who are presently not receiving any help.  In addition, we firmly believe our program will shine a little light of hope in a bleak world for the families lingering on waiting lists.

Keep squeaking your wheels – One day they will listen to us.