EEDA FAMILY ADVOCACY meeting
​Thursday, JULY 19th 2018 at 6pm
at
the Henry pfeifer Center
4062 Grumman Blvd., Calverton

​supervised respite service will be available at the center

light refreshments will be served
​

Dear Parents & Caregivers,
 
On December 13th, 2017, we had a successful inaugural meeting of the EEDA Family Advocacy Group. With the goal of having our parents and guardians better understand EEDA, a flow chart of the administration was presented. Some other highlights from the meeting were when:
  • Lisa Meyer Fertal, Chief Executive Officer, informed us of changes within the industry including managed care and impact to Medicaid Service Coordination;
  • Joy O’Shaughnessy, Chief Program Officer, discussed new developments in programming, including self-directed services and employment services;
  • Dara Gary, Controller, explained EEDA’s financial process, including Medicaid reimbursement and New York State contracts;
  • Matthew Kuriloff, Manager of CAP, PWW & Advocacy, informed us of EEDA’s role in the #BFair2DirectCare advocacy movement.
Next, the group brainstormed some ideas for future action, including:
  • Hold a fundraising walk;
  • Coordinate with the schools;
  • Host a picnic family fun day;
  • Create a resource list of physicians and clinicians;
  • Generate a glossary of the many acronyms we see;
  • Set up a Self-Direction workshop;
  • Designate a family coordinator.
If you were not able to attend our first EEDA Family Advocacy Group meeting, I hope you will consider joining us at our next meeting! I envision the group will focus on the following key areas:
 
Advocacy: Parents and caregivers will be kept abreast of changes at the federal, state and local government that impact people with intellectual and developmental disabilities. This knowledge will help us band together to take action when necessary.
 
Fundraising: Create a support network to enhance EEDA fundraising efforts and create new avenues of growth.
 
Social: Establish family-centered activities to foster support and friendship among family members and our children.
 
To establish times that are most convenient for you to attend EEDA’s Family Advocacy Group, I ask that you participate in a short online survey posted to the right of this letter.
 
We are interested in holding EEDA’s Family Advocacy Group on a quarterly basis. The exact date and time will be determined by the survey results. I welcome your input and suggestions so that we can make this a productive group for everyone!
 
Warm regards,

Diane Arpaia
EEDA Board Member & Parent
631-734-2862
DianeA@eed-a.org
​
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    EEDA'S FAMILY ADVOCACY MEETING RSVP

Report to the Governor: Keep the Promise

Community-based housing for people with intellectual and developmental disabilities.

Click HERE to read the document.

EEDA ADVOCACY GROUPS

SELF-ADVOCACY

Self-Advocacy ...is speaking up for yourself. It is making your own choices in life, big and small. It is learning about your rights and responsibilities. It is living the way you want to, and respecting the right of others to do the same.
Contact: advocacy@eed-a.org

LGBTQ ADVOCACY

Gay–straight alliances (GSA) are community based groups that provide a safe, supportive environment for LGBTQ people and their straight allies. We exist to support people of all abilities who self-identify as LGBTQ.
Contact: gsa@eed-a.org

PARENT ADVOCACY

EEDA's families, along with the support of EEDA administration and staff, are in the process of forming a parent advocacy to compliment our self-advocacy groups.  Check back here for more information. Click below for inquiries.