Category Archives: Transformation Agenda & Panel Meeting: May 19th, 2015
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
- Click For PDF: Terrified- Services for People With Disabilities
- IN Spanish:Terrified Servicios para personas con discapacidad
- IN Korean: Terrified- Services for People With Disabilities-ENGLISH-KOREAN
- Terrified Bengali
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.
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”
NYC FAIR: Advocacy News 7/27/15
Click here for a .pdf version of the Advocacy News below
All the Summer Advocacy News AND Recaps of Recent Events
Good Morning All,
Although summer is a time for lazy, hazy days of relaxing, sun and fun, we at NYC FAIR have been keeping up the HEAT these past couple months meeting with people who have a strong history with OPWDD and knowledge base that is helping us formulate a multi-pronged advocacy plan which will make us effective advocates in the coming months.
There is no vacation from advocacy and we are committed to keeping up to date on all changes and happenings in the OPWDD world so we can gear up for our Fall Advocacy efforts. That’s where you all come in. We will need all self- advocates, parents and family members to make their voice be heard. We’ll be calling on you shortly.
Included in this email: an update on scheduling of “listening sessions” for the Transformation Panel, a recap of the Town Hall meeting on Staten Island with Acting Commissioner Delaney, a review of pending Legislative Issues, a recap of the May 19th “Meet the Transformation Panel” meeting and details of the June 2nd “Knowledge is Power” meeting. Coming in August: Action Opportunities: for Everyone.
Summer News:
From Peter Pierri, Executive President of IAC on July 22nd:
“Latest word is OPWDD’s “listening sessions” are being planned for September. Scheduling logistics got in the way of them happening earlier. The Panel’s work schedule has also been extended time-wise, so these session will definitely occur prior to the Panel’s formation of specific recommendations.” Confirmed in OPWDD’s “People First News Summer 2015 See page 8
Town Hall Meeting on Staten Island:
On July 13th, 2015 SIDD Council hosted a “Town Hall” meeting with OPWDD Acting Commissioner Kerry Delaney. The conference room at IBR (NYS Institute for Basic Research) was standing room only ( 220+ people) for an hour-long lunch time meeting in the middle of the summer. Families and self-advocates came from all boroughs for this unique opportunity. Pointed questions regarding the transformation agenda, the future of OPWDD and the lack of residential development and a clear plan to address this growing need were asked.
Assemblyman Michael Cusick and other local representatives attended as well as reps from the City Comptroller’s and the Governors office were present. Because many questions and concerns remain, the acting-Commissioner agreed to attend another Town Hall meeting in the evening in September (TBA).
Residential Wait List:
Important Notice – Remember the New York State Cares Wait List? OPWDD will be updating this Residential List by calling all families who have a person on the list, survey their current residential situation, and identify future needs. There are over 11,000 people who will be called. OPWDD will be using trained staff from the Office of Children and Family Services for this effort. Prior to the calls taking place, you should expect a letter in the mail giving you an overview of this endeavor. If you are called, we strongly encourage you to participate in the survey. It will help provide our governor with real numbers in terms of need. In this years state budget, the legislature has mandated OPWDD to provide a report of its statewide review of individuals with Developmental Disabilities who are currently on its residential waiting list. This report must include an update on its transformational housing goals and develop a plan in consultation with families, individuals with DD and other stakeholders to increase housing alternatives for individuals with DD, including those not currently on the residential list. The phone calls will begin in August and continue through to September. The report to the legislature must be released by February 15, 2016.
Legislative Update as of July 13:
These bills will be sent to the Governor – to sign or veto:
- Legislation passed both houses ensuring that long term care under managed care are non-profits.
- A bill that enables families that set up accounts with ID/DD (the ABLE Act) will not interfere with eligibility for Medicaid or Social Security
- A bill allowing school psychologists to continue to perform evaluations on prospective pre-school children.
- A bill to restore the cut to the Article 16 clinics . Article 16 clinics provide medical and speciality services (ie: Physical Therapy, Occupational Therapy, Podiatry and more).
Issues before the Assembly and Senate:
Guardianship changes – different types of limited guardianship including time limited (e.g. for a month), single issue (e.g. buying a house) or a single area (e.g. financial or healthcare decisions)
Guardians will have to report yearly to OPWDD. The process for an uncontested guardianship (for people with ID/DD) would be streamlined to eliminate the need for physicians certifications, MHLS (Mental Hygiene Legal Services) would make that determination. This bill is being looked at by many stakeholder groups to make sure it satisfies a variety of situations.
Minimum wage for DSP’s: On July 22nd, 2015 the Fast Food Wage Board approved resolutions to incrementally increase the minimum wage for fast food workers to $15.per hour. Many social service organizations including agencies that work with people with ID/DD are concerned about the effect on the work force in our field. A bill was introduced that would require that the State provide funds to providers to increase salaries of the DSPS. Click here for more clarification and details from NYSARC
Recap of NYC FAIR’s May and June Meetings:
Meet the Transformation Panel:
On May 19, 2015 NYC FAIR hosted a meeting at IAC with members of the Transformation Panel. Panelist present were Michael Seerighter, NYSRA, Susan Constantino, CP of NY State, Peter Pierri, Exec. Director of IAC, Steve Freeman, Freeman and Abelson Consulting, Neil Mitchell, Exec. Assist. to Kerry Delaney.
Members of the NYC FAIR’s Executive Committee introduced themselves and opened the meeting. They presented a paper of remarks and comments that had been created about the current work of the Panel touching on the subjects they had addressed to date: Employment, Residential, Day Habilitation, Self Direction, and the Front Door among other things
The Panel Members responded to the comments and then the floor was opened to questions from the attendees.
The remarks and meeting minutes can be seen here. May 19th, 2015 Meet the Transformation Panel Meeting
In conclusion the Panel Members promised that they would bring back to the whole committee what they had heard and recommend that the listening sessions with family members around the state would take place BEFORE recommendations were made in order to be sure to include input from Family Members about their plans. They also suggested that they would welcome any other input.
Read more about the Transformation Panel.
Click here to read and or write an email today: OPWDD Transformation Panel
Knowledge IS Power:
NYC FAIR hosted a meeting for parents with children in the Education System at Sinergia on June 2nd, 2015.
Spanish translation was available.
Paolo Jordan, Lori Podvesker, and Melanie Rivera who are all parents with young children in the “system” spoke about their experiences with the Department of Education fighting to get their children the right education. In addition they presented material about recreation, respite, and other family support services. Afterwards they met individuals with specific questions and made recommendations to them about a way forward.
Coming in August: What Keeps Me Up at Night?
What our families need to survive. Ways to to tell our stories and get them to the people who can help us.
Summary Of Meet The Transformation Panel Meeting held May 19th, 2015
NYC FAIR invited members of the Transformation Panel to come and hear from concerned parents/guardians and other family members about the work of the Panel in implementing the Transformation Agenda. The event took place at the headquarters of the Inter Agency Council, 150 W. 30th Street
Present: from the Panel: Pete Pierri, Executive Director of the IAC, Stephen Freeman of Freeman & Abelson, former head of YAI, Susan Constantino of CP NYS, Michael Seerighter of NYSRA, and Neil Mitchell, Asst. to Acting Commissioner Kerry Delaney.
In the audience were members of NYC FAIR and other concerned citizens representing all the boroughs, Westchester GROW and LI Alliance
Elly Rufer introduced the panel and set out the parameters of the evening. Meri Krassner read a statement compiled of questions and concerns that had come up in meetings about the Transformation Agenda and questions submitted online by attendees. It is posted on the website.
The Panel responded, most agreeing that the Agenda does not take into consideration the needs of those who are most affected, and most vulnerable.Most of the recommendations reflect the abilities of the highest functioning members of the community. It was stated repeatedly that they understand this and agree with this perception and were willing to go back to the whole panel and make this point.
The Panel took questions from the audience and promised to answer any questions that were submitted hereafter. It was clear that there was a lot of trepidation, fear and distrust among the attendees. Pete Pierri made the point that in the absence of communication from OPWDD people will make up their owns stories and that it is imperative that OPWDD introduce transparency and make a better effort at communication.
Jim Karpe summed up and the meeting was adjourned.
A transcription of the meeting is available online along with the questions submitted to the Panel members.