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

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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”

 ———————–

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

NYS Senator David Carlucci: Meeting Information & Registration

Action Alerts, Advocacy, Bronx, Brooklyn, Events, Manhattan, nyc fair, opwdd, Queens, Resources, Staten Island, Surveys, , , , ,

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

 

 

 

NYC FAIR Was A Presence @ Assembly Hearing on October 20th

Advocacy, Events, opwdd, Testimony, , , , ,

Re-cap by Barbara V. Crosier, Cerebral Palsy Assoc. of NYS of NYS Assembly Hearings on October 20th, 2015

WE WILL POST ADD”L COVERAGE AS AVAILABLE

READ TESTIMONY GIVEN

“The Assembly Mental Health and Developmental Disabilities Committee’s hearing to identify barriers to the successful implementation of the OPWDD Transformation Agreement  was held on Tuesday, October 20, 2015,  in Albany.

Assembly Mental Health and Developmental Disabilities Committee Chair, Aileen Gunther was joined at various points by Assemblymembers John McDonald, Donna Lupardo, Tom Abinanti and Didi Barrett. The hearing went to 5 pm with 29 individuals presenting testimony.  Attached is the list (http://assembly.state.ny.us/av/hearings/) of those who presented testimony with Helene DeSanto presenting for OPWDD and the nine panels primarily comprised of parents.”

…………………..
“Assemblymember Gunther said that she clearly heard how critical it was for additional funding be added for residential and day supports, direct support professional wages and that managed care had not been implemented successfully for individuals with I/DD in any state.  The hearing provided a wonderful opportunity for families and advocates to voice the growing concerns of the developmental disabilities field.”

The hearing can be seen at: http://assembly.state.ny.us/av/hearings/

View articles from Ploitico Story on Hearing

featuring quotes from Elly Rufer, NYC FAIR Executive
and AP story on Hearing (Syracuse.com)
 
 

Services for People With Disabilities: Terrified about the future

Action Alerts, Advocacy, opwdd, Self-Direction, Testimony, Transformation Agenda & Panel Meeting: May 19th, 2015, , , , , ,

Services for People With Disabilities: Terrified about the future
Report from the OPWDD Transformation Panel Forums              Sept 21, 2015

by Jim Karpe, NYC FAIR member            www.nycfair.org

As parents of adult children with disabilities, we hear beautiful words of a future with a wide range of individualized services. Meanwhile the actual system in place today continues to disintegrate before our eyes.  Programs and supports have been discontinued before alternatives have been developed.   The negative impacts we see are the result of poor planning or lack of planning. Or perhaps there is an evil plan, but most likely our adult children are the victims of incompetence.  The distinction does not matter to those individuals whose lives have been damaged by the gap between words and reality.

In Transformation Panel forums on Long Island and in Manhattan on September 17th, dozens of parents and self-advocates testified about the real obstacles to care they are facing.  Our population is so diverse, with a wide range of issues and challenges.  Yet over and over we heard the same thing from those different perspectives:  The system has stopped working, is un-raveling, has let us down, has abandoned us.  There is no monitoring, and there is no place to voice our dissatisfaction.

We also heard from OPWDD Acting Commissioner Kerry Delaney at the forums.  We heard Ms. Delaney acknowledge the need for transparency, but we continue to get very little data.  We heard acknowledgement that “one-size does not fit all”, but we continue to have policies which shut down the “fitting” options for the most fragile.  We heard that the transformation is “not about taking away services, instead about responding to actual needs and being sustainable.”  But meanwhile we watch the dismantling of the supports which were in place.  Individuals are getting pulled out of sheltered workshops where they feel valued and needed, and are instead “out in the community”—walking aimlessly around a mall, losing hope and regressing.  Other individuals are losing their homes of 20 or 30 years, since those homes are now alleged to be harmful “institutions”.  And those individuals capable of greater independence find that the Self-Directed programs of OPWDD have thickets of restrictions and forests of paper work.  The promise of Self-Direction was “you control your own budgets.”  The reality is that we can spend money only within narrow, non-overlapping categories.  It’s like the choice offered by the Model-T Ford: “You can have any color you want, as long as it’s black.”

People With Disabilities are getting forced out of options which were working—which did fit.  No one should be limited to sheltered workshops as their only option for activity.  But neither should anyone be forced out of a sheltered workshop that they treasure and which works for them.   Our actual needs are the same as every one else—housing, transportation, education, jobs, friends.  A full and meaningful life.

The fears, the concerns, and the stories were the same on Long Island and in New York City.  I’m confident they are the same in Upstate NY as well.  Ronnie, a plain-spoken self-advocate in Manhattan, captured the spirit of us all with his simple message to OPWDD: “You are not doing your job.”

This situation is not the fault of Olmstead.  That landmark Supreme Court decision has at its heart the right of the individual to choose the level of community integration they desire.  The fundamental issue instead is lack of courage.  For decades, New York State siphoned Medicaid funds to help balance the State budget.
(See www.nytimes.com/2012/10/24/nyregion/new-yorks-medicaid-program-is-at-the-mercy-of-washington.html )
That has ended, and in the aftermath:

  • Federal bureaucrats are punishing NYS for past fiscal sins, as the federal Centers for Medicare & Medicaid Services (CMS) puts in place regulations that restrict choice,
  • State officials have abandoned OPW, now that it is no longer a profit center,
  • With no political backing to fight for the individuals who need services, the Office for People With Developmental Disabilities (OPWDD) has become the Office for CMS Compliance.

Fundamentally, OPWDD needs to start advocating for People With Disabilities.  Has to stop falling over themselves in their rush to comply with every CMS edict.  Sadly, when they fall down, it is our kids who get bruised.  OPWDD needs to stop adhering to CMS regulations which damage fragile individuals.  And they need to stop going beyond those regulations!  New York State is putting in place policies and procedures which go far beyond what is required by CMS.

It comes down to us: Parents and self-advocates.  Our state officials must support our population, and must support OPWDD– and if needed, pressure OPWDD.  The appropriate response to many of the CMS regulations is not “Yes sir”, but “No way!”  Tell your legislator, tell the governor, and tell OPWDD itself, that we need to put People back into the center of the process.  Say no to serving CMS, and say yes to serving People.

Strategies for the Future: Supporting Complex Needs: 11/5/15

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Strategies for the Future: Supporting Complex Needs
A Symposium Sponsored by the NYS Office For People With Developmental Disabilities

Click Here for Flyer: Symposium Flyer Complex Needs Nov 5 2015

More Information Soon

This one-day symposium will address the challenges of providing supports to individuals with complex medical and behavioral needs. Presentations, panels and discussion will focus on areas in OPWDD’s system transformation, such as self-direction, community housing, employment and meaningful community activities, technology and the workforce. OPWDD’s goal is to ensure that the personal outcomes to be achieved by the transformation agenda can be realized by everyone, including those with complex support needs. The conference is open to families, individuals, service providers and policymakers.

Date: Thursday November 5, 2015
Time: 8 a.m. to 4:30 p.m.
Location: Empire State Plaza Convention Center, Albany, NY