Five of the members of OPWDD’S Transformation Panel came to a meeting on May 19th in NYC, to listen to our concerns and tell us their reactions.
Dear Transformation Panel –
First, thank you for coming to speak and to listen. We appreciate your initiative and your acknowledgement of parents/guardians/family members point of view. As became clear during the meetings, we are passionate about caring for our loved ones, and we are very worried about what the future holds.
Hearing the members of the panel express their sympathy for, and understanding of, our diverse population was heartening but we remain concerned. As Susan Constantino put it “Every time we meet, we bring up the most vulnerable. Their situation touches my heart.” The panelists who spoke up all agreed: OPWDD needs to create and maintain a wide range of options for both housing and day programs.
Our concern comes from the disconnect between the Panel’s attitudes and OPWDD’s actions. The system right now appears to say:
One size fits all – the size of the most capable. We will provide funding only for houses that hold four or less, and everyone belongs in competitive employment programs. The rest of you can have under-staffed day-hab-without walls.
Our families, the ever-aging care-givers of the most vulnerable, are already feeling the impact of the recent changes, and fearing the impact of the changes to come. We had dozens of questions – but really only one message for OPWDD: “This does not work. How dare you?!”
Sincerely,
Jim Karpe, Elly Rufer, and Meri Krassner,
for the Executive Committee of NYC FAIR
NEXT STEPS
FOR THE PANEL MEMBERS. We understand that the Panel does not dictate to OPWDD. But we challenge you – do not let OPWDD dictate to you.
Please keep in mind the underlying assumptions behind the suggested policies, the level of capability assumed, and remain mindful of the full range of complex human need in this community.
For the families and self-advocates. We cannot do better than to quote Panel member Peter Pierri: “Advocate. Don’t stop til you get what you want.”
ATTACHMENTS
The PDFs below contain our minutes of the May 19th session, and the questions submitted by families from around the greater NYC Metropolitan area, including Westchester and Long Island.
Read the entire Minutes here: 5.19 minutes with wrap-up FINAL
Read Questions Submitted at the Meeting & Forwarded to Acting Commissioner Delaney and the Transformation Panel:? from audience 5.19.2015