To Tallahassee and Back: DSI Supporters and the Importance of Community Advocates

During my years in Tallahassee I have had the pleasure of meeting and working with a wide cross-section of people from both within Florida and sometimes from without.  Anyone who takes the time to travel to The Capitol to advocate for a cause or a bill is, by that very action, committed to what they are doing.  I could probably write a book if I tried to share my personal stories about the many fine people I have had the opportunity to spend time working with on a bill or an amendment.  Since this space does not allow for book-length pieces, I will confine this week’s post to just one organization: DSI Supporters.

At the time I first came into contact with DSI Supporters the president was Ed Carraway, assisted by his able and extremely learned wife Virginia.  The mission of this fine group is as follows: DSI Supporters, Inc., along with its Board of Directors, educate, inform and advocate for people with mental retardation and developmental disabilities, and their friends and families.  Our core constituency is comprised of individuals who need residential services in Florida's Developmental Services Institutions (DSI's), regardless of whether they need DSI care now or in the future.  The introduction came through New Port Richey resident Don Stover who is active in this and a related group, the nationally recognized Voice of the Retarded (also an advocacy group for those with developmental and related intellectual disabilities).

Ed Carraway is a gregarious man who had a successful career in business.  His wife, a medical professional, is also a professor and an accomplished expert in her own right.  The two of them, along with a very dedicated core of individuals, work very hard to keep the spotlight on Florida’s developmental services institutions and the needed residential option they offer.  As each member of DSI Supporters has someone in their respective family who resides in a state-run residential setting, they work hard to make sure policymakers understand the importance of keeping these residences viable.

If there is one thing I have learned during my nearly two decades in Tallahassee is that one-size does NOT fit all.  That is why facility-based residential programs are a vital and needed alternative, for those who may need that level of support, when compared to community-based services that seem to be the way of the future.  Group homes and assisted living facilities are all needed.  However, there are people who need the highly structured environment that a residential institution offers.  All options are needed as any one cannot meet the needs of every individual with a disability.

Ed & Virginia Carraway, along with Don Stover and other committed members, approached then-Senator Fasano and asked him to champion their cause. This came about due to the impending closure of Gulf Coast, a residential facility that had been home for people with developmental disabilities (in some cases decades).  Always eager to help those with disabilities, Senator Mike Fasano agreed to sponsor legislation that would have put the decision for the closure of state developmental disability institutions into the hands of the Florida Cabinet.  His proposal included mandated notification of family and interested parties so that what happened at Gulf Coast would not be repeated.    

The genesis for the bill was the simple, yet extremely important, fact that family members learned of the upcoming closure through a newspaper story.  Can you imagine finding out that your loved one’s home was going to close by picking up the local paper?  Family members were outraged that their children or grandchildren were going to be transferred to a location far away without even being properly notified.    The Carraways and others traveled to Tallahassee in the spring of 2007 to testify before both Senate and House committees in favor of Senator Fasano’s legislation.

I was invited to travel to Washington, D.C. in June of that year to speak before the national Voice of the Retarded’s annual meeting to discuss Senator Fasano’s bill and how it could be used as a model for other states.  That trip was definitely one of the more memorable moments of my career.  Any time you are together with others of similar mind and goals it is uplifting.  To know that what we did in Florida may be used to help families in other parts of the country was rewarding indeed.  I look back on the journey that bill took with fond memories.

A couple of years ago Ed & Virginia Carraway visited Pasco County with the purpose of touring the Mike Fasano Regional Hurricane Shelter in Hudson.  The shelter, built to serve the special needs population in particular, provided many ideas for the Carraways to bring back to their own community.  Their visit was a fitting close to that chapter.  This fine couple, who have traveled the nation helping others in need, wrapped up that year’s journey with ideas to bring home to their own community.

If you enjoyed this little profile about an organization that does not get the spotlight as some larger groups do, please let me know.  I will gladly share in future posts about other excellent groups that do good work in Tallahassee and elsewhere.  Please leave me a comment below!