Tag Archives: advocacy

Transformation Panel Draft Recommendations Released

.pdf: panel_report (1)

FYI: The MEAT of the report is in the  Appendix (pg17 – 19). No methods for implementation are reveled.

Below is the announcement of the publication on the report on Friday, January 8th, 2016 at 6:38pm

The Transformation Panel Report lays out the process, vision and recommendations of the Transformation Panel, a diverse group of people brought together by Acting Commissioner Kerry A. Delaney to re-imagine the OPWDD system. This collaborative document takes into account the voices of individuals and their family members, which were heard through a series of public forums held by the panel and Acting Commissioner Delaney.

Now, we are again asking our valued stakeholders—people with developmental disabilities, their family members and caregivers, provider agency representatives and government partners—to share their opinions. After reading the Transformation Panel’s draft report, please feel free to send your comments on it to transformation.panel@opwdd.ny.gov

The time for public comment will continue through January 22. Please be sure to send your comments to transformation.panel@opwdd.ny.gov by January 22 for them to be considered.

You may also submit comments in writing to:
NYS Office for People With Developmental Disabilities
Commissioner’s Office: Recommendations Feedback
44 Holland Avenue, 3rd Floor
Albany, NY 12229

After the public comment period has ended, revisions will be made to the report based on the feedback we receive and a final draft will be ready by mid-February. Work on implementing some of the recommendations has already begun, and will proceed to accomplish both short- and long-term goals.

On behalf of the Panel, we hope you find this report to be a statement on the vision, ideas and sense of collaboration that will guide the evolution of our system.

We look forward to your feedback.

Town Hall Meeting on Staten Island: 1/13/16

Dear members,

The need to advocate is essential in order to protect supports and services for our children.  Our local legislators need to Keep the Promise that was made to our children.

Attached please find a letter detailing what we still need to advocate for.

Also attached is a Save the Date flyer for the SIDDC Advocacy Committee on January 13, 2016 at CSI at 6:30 in the evening, along with some talking points that will be discussed.

Hope you can join us tomorrow for “Celebrating Achievements”!

Thank you.

The Staten Island Developmental Disabilities Council
Elizabeth Connelly Center
930 Willowbrook Road Building 41A
Staten Island, NY 10314
718-983-5276
email: contactsiddc@siddc.org
website: www.siddc.org

SIDDC Advocacy Meeting at CSI

SIDDC Advocacy Talking Points

SIDDC letter 12.10.15

Start fixing it now: Meet the Needs of People with Developmental Disabilities in New York State

Start fixing it now
Meet the Needs of People with Developmental Disabilities in New York State

Authored by: Jim Karpe, NYC FAIR member

Download  .PDFs: START FIXING IT NOWDETAILED CONTACT METHODS TO FIX IT  & FAMILY LETTERS TO FIX IT

Sometimes you have to be fierce.  Massive changes are underway in the service system for people with developmental disabilities.  The disruption is already being felt.  The lives of our family members are at stake.  Many of us have been speaking out, but so far we are not being heard by those who make policy and our government leaders.  We need to speak louder.  We need letter writing campaigns, petitions, and rallies, whatever it takes.  The consequence of not speaking out is damaged lives.

In my nightmares, after I am gone my low-IQ son becomes homeless and sleeps in the corner of a subway car. In Tony’s nightmare, his autistic son runs onto a highway and is struck by a car. Elinor’s nightmare is that her daughter has a drop seizure and falls down the stairs.

Katherine’s nightmare has already become reality.  Her 56-year-old son happily worked for over two decades at a sheltered workshop.  The doors closed in 2015.  Without another equivalent worthwhile activity, his sense of self is diminished, and he is becoming increasingly depressed.

This is not about this year’s budget, or next year’s priority list.  This is about our children’s lives.  Unmet needs have many faces, and most of those faces are hidden.  There are babies with disabilities who are not getting early intervention, Teen-agers in the corner of an inappropriate classroom. There are adults still waiting in their aging parent’s homes after 15 years on the residential “priority list”.  Some people are regressing in a day program because their workplace was shut down.  Worse yet there are those completely unserved because their parents gave up after the second or third or fourth rejection to access services.

The painful truth is that due to their disabilities, most of our children may not ever be able to complain in a meaningful way, we must be their voice to get things done.  It is up to us. .

Start fixing it now. Here is what you can do to help right now:

  • Send letters to our legislators and policy makers in State and National government.  Let them know what is keeping you up at night. Tell them how you want your loved one with a developmental disability to continue to receive and choose the services that they want and “one size does not fit all”. Use samples from following pages, or write your own.
  • Share this with at least one relative, neighbor, caregiver and friends.  Ask them to send a letter.
  • Stay in touch.  For current action alerts, see www.nycfair.org

In New York State, over one hundred thousand people with disabilities get services.  Many started out with two parents, and most have sympathetic relatives, neighbors, caregivers, and friends…  altogether we are a very big voting block.

It is time to flex our political muscle.  The NYC FAIR web site also has more background material including “Terrified About the Future” and “How Did We Get Here”

 ———————–

Sample Letters In support of People With Developmental Disabilities
In the following attachments you will find sample letters.

“Detailed Methods to Fix It” includes two letters with many factual references.The first letter is addressed to New York State Governor Cuomo, OPWDD, Medicaid Director Jason Helgerson, and State Legislators. The second to Federal CMS Director Wachino, President Obama and our Federal Legislators.  Below and in the attachments are addresses for mailing and e-mailing.

“Family Letters to Fix It” contains suggestions for the very personal touch. Create your own letter or use these examples as a starting point.

Send your letters NowPlease copy NYC FAIR on your submission by mail or email.

BELOW IS CONTACT INFORMATION. CLICK HERE FOR SAMPLE LETTERS

Contact information included in both attachments.
Contact info: State

The Honorable Andrew M. Cuomo; Governor of NYS; NYS State Capitol Building; Albany, NY 12224
Kerry Delaney; Acting Commissioner OPWDD; 44 Holland Avenue; Albany, New York 12229
Jason Helgerson; Medicaid Director; NYS Dept. of Health; 1 Commerce Plaza- Ste 1211; Albany, NY 12210
NYC FAIR; c/o E. Rufer; 201 East 17th Street Apt 2G; NY, NY 10003

To get your State representatives address info, go to:
www.nysenate.gov/find-my-senator
assembly.state.ny.us/mem/search/

Can also email to:
Gov. Cuomo             Submit msg on-line at: www.governor.ny.gov/contact
Kerry Delaney           Commissioners.Correspondence.Unit@opwdd.ny.gov
Jason Helgerson       jah23@health.state.ny.us
NYC FAIR                 testimony@nycfair.org

 

Contact info: Federal

President Obama; The White House; 1600 Pennsylvania Avenue NW; Washington, DC 20500
Director Vikki Wachino; CMS; 7500 Security Boulevard; Baltimore, MD 21244
Office of Inspector General; U.S. Dept. of HHS; 330 Independence Avenue, SW; Washington, DC 20201
Senator Kirsten Gillibrand; 478 Russell Senate Office Building; Washington, DC 20510
Senator Charles Schumer; 322 Hart Senate Office Building; Washington, DC 20510
NYC FAIR;  c/o E. Rufer; 201 East 17th Street Apt 2G; NY, NY 10003
Office of Medicaid Inspector General; 800 North Pearl Street; Albany, NY 12204

To get your representative, use: www.contactingthecongress.org/
Can also copy & paste to submit on line:
www.whitehouse.gov/contact/submit-questions-and-comments
questions.cms.gov/newrequest.php?id=5005&subtopicID=8296#2
forms.oig.hhs.gov/hotlineoperations/report-fraud-form.aspx
www.omig.ny.gov/compliance/contact-boc
www.gillibrand.senate.gov/contact/
www.schumer.senate.gov/contact/email-chuck

NYS Senator David Carlucci: Meeting Information & Registration

LINKED HERE ARE THE HANDOUTS FROM OCTOBER 27TH MEETING

A RECAP & A TRANSCRIPT OF THE MEETING WILL BE POSTED ASAP

Resource Events for Oct 27 mtg NYC FAIR MISSION

NYC FAIR MISSION

SummaryofConcernsFinal