Print this Page


Screen Shot 2016-07-30 at 3.50.37 PM

Thank you to Congressman John Carney for joining us at our August FSU meeting! It was an honor to have the opportunity to hold discussions with such a tireless champion for Delaware citizens with disabilities. We are so excited that you spent so much time with us. Mr. Carney received rave reviews! Read a few excerpts from FSU parents below:

Dear Congressman Carney,

What you brought to parents and siblings at last evening’s Families Speaking Up meeting is amazing!  You listened. And you listened. Not once did you shy away from hard questions or provide an easy stock answer.  

For the past eight years, families of adults with serious IDD issues have watched in dismay while our loved ones have been erased from public consciousness.  We felt stunned as we witnessed efforts to reverse gains that had been made over many years of struggle and hard work.

In addition to giving us an hour and a half of your attention, you gave us hope. Thank you very much for coming to Families Speaking Up. I am supporting you in your campaign and I will support you once you become Governor.”

Dear Congressman Carney,

Thank you so very much for taking the time from your busy schedule to join our families at Families Speaking Up last night.  It was very clear that you were actively listening to our concerns and expanding your own understanding of the challenges that both we and our loved ones face.  I know those who don’t know you appreciated your sharing your niece, Lorraine’s family story.  

While I am from Lewes, I am so grateful to have connected with FSU during the last state legislative session. This group has strong determined leadership and is growing. Our Executive Team, which I have recently been invited to join, is a group of pragmatic idealists. We want to work together with our hard working state Legislators and the next administration in a collaborative way to accomplish what is possible now and to plan to accomplish what is needed going forward.

While we understand that there are always budget constraints, we intend to contribute constructively to real solutions. I would also like to thank your staff, especially, Jessica, for their hard work to tackle the difficult challenges that we all face.



One year ago, 35 members of Families Speaking Up (including persons with IDD, parents, siblings and friends) attended the ADA 25th Anniversary celebration in Dover anticipating the opportunity to publically celebrate this important event with others in the disability community. As you are likely aware by now, this was not what transpired. The events of the day were chronicled in the News Journal (July 19, 2015), and many of you voiced your feelings with follow-up letters-to-the-editor in the News Journal.
Concerned about the events of the day, Lanny and Micki Edelsohn filed a complaint with the Delaware Attorney General’s office of Civil Rights and Public Trust. We are pleased to report that as a result of the efforts of Deputy Attorney General Allison Reardon and her staff at the Civil Rights division, we have received the following letter of apology from Ms. Pat Maichle, Senior Administrator of the Delaware Disabilities Council:

Screen Shot 2016-07-23 at 7.17.10 PM

With a disability population as diverse as the general population, FSU holds firm to the tenet that all voices should be heard. We would like to publicly accept Ms. Maichle’s apology and thank her for her commitment to open and direct communication. We are delighted that she will be joining us at our October 17, 2016 FSU meeting at Easter Seals (map) to hold an honest and respectful discussion that will help lay a foundation for future collaboration on important issues facing the disabilities population.


 Thank you to everyone who filled out the Planned Community project surveys! The results are in! Details forthcoming. 




Remembering our friend, Charlie Cawley.

Screen Shot 2015-11-22 at 8.14.57 PM

Hello everyone,

The entire disability community mourns the passing of our dear friend and advocate, Charles M. Cawley, former CEO of MBNA Bank.

Under his leadership, Support Services at MBNA was born, providing meaningful, challenging and stimulating full time jobs with benefits for 330 people with intellectual and developmental disabilities. In addition, he was a major supporter of Homes For Life Foundation contributing hundreds of thousands of dollars during its infancy and giving credibility in the Delaware community to Homes For Life’s efforts to provide safe and comfortable homes for those with IDD. Without Charlie’s support there would be no Homes For Life or its offspring Families Speaking UP.

Charlie’s kind and generous spirit will live on in our hearts. We ask that everyone keep Charlie’s wife, Julie, and his loved ones in your thoughts and prayers.

-Micki and Lanny



Our Mission:

Families Speaking Up is a non-partisan, grass roots group of people with intellectual and developmental disabilities (IDD), their families, friends, and caregivers.  We work to ensure that all voices are heard in the IDD debate.  We share our knowledge and experiences, advocate for and include our loved ones with IDD in decision-making, serve as a unifying voice, and educate ourselves and policymakers.  There is strength in numbers and our many strong voices must be heard.

Our Vision:

Through family support, networking, social media, word of mouth, and with the power of our numbers, we will seek to advocate for and influence Federal and State policy for all persons with IDD.

We believe that:

  • Federal legislation and guidelines have allowed our adult children to benefit from well run state and local housing and employment programs.
  • Changes in guidelines and trends may impact both the funding and implementation of laws that until now have benefited our adult children.
  • Programs that are at risk of being eliminated are those that serve individuals with the most severe disabilities who are the least able to speak up for themselves.
  • Persons with Intellectual and/or Developmental Disabilities (IDD) should have the option to choose housing and employment programs that ensure the least restrictive and individually appropriate settings.
  • By eliminating options and choice we will see a “one size fits all” service system.  Such a system will not meet the individual needs of our adult children.

We know that:

  • There are people with IDD and their families who share our beliefs and concerns. These people not only have the right be heard, they need to be heard!
  • Poorly managed housing and employment programs should not be allowed to continue to operate.
  • If we work together and are able to raise and communicate the concerns and needs of all persons with IDD, our collective voice will have a greater impact.
  • Together we must work with our federal, state and local governments and policymakers to improve existing programs while exploring new opportunities for all persons with IDD.

We hope that:

  • You will join with us to advocate for all persons with IDD especially those who cannot advocate on their own behalf
  • You will use this website as a tool to tell your stories and voice your opinion on what works well and what needs improvement.
  • You will visit this site often to learn or share news and information.
  • You will contact your state and local government officials and legislative representatives to let them know what your family member wants and needs.
  • We can join together to make sure all are heard and all options remain on the table.

Just as one size cannot fit all, one perspective cannot know all, one voice does not tell all!

Please Get Involved today.

Permanent link to this article: