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 NOW, DETAILED 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”

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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 Now. Please 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