What's New

PLD Fellows remember to meet with your coaching groups.

T.B.A. Social event for PLD Fellows and their families. Check back for more information.

Soon to be posted
Bi-Monthly, Large Group Fellows' Sessions. Check back for more information.

PLD Picnic for Fellows, families, and friends. Prospective new applicants to the PLD Project also welcome.

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As a co host for for the Henry Crespo Show (Real talk) WVCG AM 1080 Radio One, PLD Fellow Keith Ivory is making news with his radio show. He recently interviewed several other PLD Fellows on his show that discussed the Parent Leadership Development Project and in an on air discussion focused on kids and adults with special needs and disabilities.
See a video clip of this show below.

Disabilities Radio Show (Windows Media Player version) 2:23
Disabilities Radio Show (Realplayer version) 2:23
You must have Real Media's RealPlayer plugin or Windows Media Player to view this clip. See links to plugins at the bottom of this page.

PLD Fellow, Suzy Morales has recently been to Washington, D.C. discussing proposed cuts in Medicaid spending with Congressperson Ileana Roslehtinen, Congressman Lincoln DiazBalart, Congressman Mario DiazBalart, and Board Member of the Childrens' Trust, Thomas Rozek.

Susy Morales is a Board Member, 2005 Conference Host, CHARGE Syndrome Foundation, Inc. http://www.chargesyndrome.org/
Parent Partner, Florida Outreach Project for Children and Young Adults who are Deafblind
http://www.deafblind.ufl.edu/ and a Regional Director, 4a, NFADB (National Family Association for Deaf-Blind) http://www.nfadb.org/

PLD Fellow and Coach, Shannon Mora, has recently been in the news in a quote for the Sun Sentinel regarding her petition to to change the Florida State constitution regarding voting processes for parents.

Read an Interview with Ms. Mora in the Sun-Sentinel (This is a .pdf file, you must have Adobe Acrobat Reader to open this file.)

Shannon Mora is a Project Supervisor for Parent to Parent of Miami http://www.ptopmiami.org/

PLD Fellow, Julieta Romano and her family, have just returned from a trip to Washington, D.C. where she attended an art show and award ceremony hosted by VSA Arts celebrating her daughter's artistic talents. Her daughter, Martina, age 10, was chosen to represent all of Florida for her beautiful art piece. Another example of Martina's art work is housed in the Mailman Center for Child Development, ArtAbilities Art Collection. (Both programs sponsor art work created by children who have disabilities or chronic illness.)

Julieta Romano is an advocate and supportive parent of families of children with Down Syndrome.

PLD Fellows, Francine Anderson and Elizabeth Wenger answer the call for stories that will be presented to Congress by Senator Kennedy with the Family Opportunity Act - Expansion of Medicaid to include middle income families. Both Fellows have shared stories about their children and the hardships they have faced as parents of a child with a disability in the state of Florida. Their stories are below.

Francine's Story

I have a 4 year old son diagnosed with an autism spectrum disorder (together w/ hypotonia, speech/oral motor apraxia, ADHD and carnitine deficiency). I have private insurance with Avmed through my employer. However, our policy excludes any diagnostic testing or treatments related to his disability, specifically the exclusions in the policy state:

"Diagnostic testing and treatment related to mental retardation or deficiency, learning disabilities, behavioral problem, developmental delays, Autism Spectrum Disorder or Attention Deficit Disorder. Expenses for remedial or special education, counseling or therapy including evaluation and treatment of the above-listed conditions or behavioral training whether or not associated with the manifest mental disorders or other disturbances"

"Speech therapy for delayed or abnormal speech pathology is not covered."

We have registered for the Med waiver list. However, they will not consider him for inclusion on the waiting list until he turns 5. If he is approved for the waiting list, it will be years more before any benefits might be realized.

Recently, in an effort to help pay for our son's therapies and treatments, we have had to file for an emergency request to withdraw funds from our retirement plan, vitually elminiating the funds. We estimate that this will pay for perhaps 1 year's worth of treatments. I'm not sure what we will do after that.

Elizabeth's Story

We have 2 children, a 2 1/2 year old daughter who is typically developed and a 6 year old son, Julian, who was diagnosed with a profound bilateral hearing loss when he was two months old. He also has a demyelinating neuropathy. He walks with a walker and hears with a cochlear implant, which he received when he was 12 months old.
We have health insurance through my husband's job.

The policy only allows 60 therapy sessions a year. We go to seven sessions of therapy (physical, occupational and speech therapy) a week, so at that rate, our covered sessions are exhausted during the first two months of the year.

My son has had 5 surgeries already, and every time he has surgery, the orthopeadics surgeon writes a prescription for physical therapy for five times a week, as part of the rehabilation process. So far we have been paying for these therapies from my husband's salary and our savings, but no money is enough.

We have put our son in the waiting list for Medicaid Waiver, but that could take years until he gets in. In the meantime, we are very concerned that the salary
and savings are not going to be enough to cover
all of our son's medical expenses.