Category Archives: opwdd

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

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

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

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

Register Now of Transformation Panel Public Forums: Transforming Together (From OPWDD)

BELOW ARE THE INSTRUCTIONS TO REGISTER TO ATTEND THE TRANSFORMATION FORUMS…AND TO SPEAK OR SUBMIT YOUR THOUGHTS & CONCERNS.

IT IS URGENT THAT WE SHOW UP AND SPEAK OUT.

“The goal of transforming our system of support is to help improve the lives of the people we serve. The Transformation Panel was created to address your concerns and deliver
recommendations on the future of our system.

You are invited to join us at one of seven Transformation Panel public forums, held across the state throughout the month of September, to share your thoughts, ideas and concerns with OPWDD Acting Commissioner Kerry A. Delaney and Transformation Panel members.

These public forums are an opportunity to express your views, and we ask that you consider the following questions when sharing your thoughts to help us learn the most from this forum:

· How can self-direction help you take control of your supports and services?
· What do you think would help more people find and keep jobs in the community?
· How can we better plan to meet your residential support needs in the community, now and into the future?
· What ideas do you have for reforming the existing system so it will be sustainable and flexible enough to help meet people’s needs into the future?

Your views will inform the Transformation Panel Recommendations, the Residential Registration List Report and the development of the Statewide Comprehensive Plan for Services (5.07).

Please register here [http://www.opwdd.ny.gov/node/6128/] by 3 days in advance of the forum you are attending, and also if you will be speaking, since space will be limited. We will be collecting questions in advance when you register and will try to address as many of the questions submitted in advance as possible.

We ask that your questions address broader system-wide issues. Questions about a specific person’s services will be directed o OPWDD’s regional offices and will not be addressed at this forum. Speakers will be tasked to register in advance, limit their comments to no more than three (3) minutes, and bring two (2) copies of their written thoughts.

You can also submit your thoughts or concerns in writing if unable to attend:

NYS Office for People With Developmental Disabilities
Neil Mitchell, Special Assistant to the Commissioner
44 Holland Ave., 3rd Floor
Albany, NY 12203
Or by email: Neil.A.Mitchell@opwdd.ny.gov

For general information about the Public Forums, please contact:

1-866-946-9733 or Transformation.Panel@opwdd.ny.gov

Transforming Together Public Forum Schedule

Thursday, September 17
Long Island
12 noon – 2 pm
Upsky Long Island Hotel
110 Motor Parkway, Hauppauge, NY

New York City
5 pm – 7 pm
UJA-Federation of New York
130 East 59th St, NY, NY
Thursday, September 24
Syracuse
12 noon – 2 pm
The New York State Fairgrounds
Art and Home Center, Martha Eddy Room
581 State Fair Blvd., Syracuse

Rochester
5 pm – 7 pm
Guardian Angels Church Hall
2061 E. Henrietta Road, Henrietta

Friday, September 25
Buffalo
11 am – 1 pm
Burchfield Penney Art Center
Auditorium
1300 Elmwood Ave, Buffalo

Tuesday, September 29
Albany
5 pm – 7 pm
Empire State Plaza,
Meeting Room 6, Albany

Wednesday, September 30
Plattsburgh
12 noon – 2 pm
Westside Ballroom
253 New York Road, Plattsburgh”

Transformation Panel Public Forums – Hope to see you in September!

Transformation Panel Forums: Just Announced

NYC  & LI FORUMS ARE SEPTEMBER 17th. SEE EMAIL FROM OPWDD BELOW

WE HOPE TO SEE YOU IN SEPTEMBER!

The goal of transforming our system of support is to improve the lives of the people we serve.

The Transformation Panel was created to help address your concerns and deliver recommendations on the future of our system.

You are invited to join us at one of seven Transformation Panel public forums, held across the state throughout the month of September, to share your views. Your views will inform the Panel’s recommendations,and these public forums are an opportunity to express them.

Please save the date as we hope to see and hear from you. More details will follow.

Thursday, September 17
Long Island
12 noon – 2 pm
Upsky Long Island Hotel
110 Motor Parkway, Hauppauge, NY

New York City
5 pm – 7 pm
UJA-Federation of New York
130 East 59th St, NY, NY
 

Thursday, September 24
Syracuse
12 noon – 2 pm
The New York State Fairgrounds
Art and Home Center, Martha Eddy Room
581 State Fair Blvd., Syracuse

Rochester
5 pm – 7 pm
Guardian Angels Church Hall
2061 E. Henrietta Road, Henrietta

Friday, September 25
Buffalo
11 am – 1 pm
Burchfield Penney Art Center
Auditorium
1300 Elmwood Ave, Buffalo

Tuesday, September 29
Albany
5 pm – 7 pm
Empire State Plaza,
Meeting Room 6, Albany

Wednesday, September 30
Plattsburgh
12 noon – 2 pm
Westside Ballroom
253 New York Road, Plattsburgh