Tag Archives: Transformation Panel
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 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
- 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.
The Scoop on the Residential Wait List, Survey & More
BELOW IS THE EMAIL SEND ON AUGUST 20, 2015 BY NYC FAIR: (PDF FILES ARE AT THE END OF THIS ARTICLE)
Good Morning NYC FAIR,
Below is a good description of the “Residential Wait List” process and survey. It was extracted from a detailed email from OPWDD. The link to OPWDD’s information is: http://www.opwdd.ny.gov/opwdd_about/commissioners_page/rrl/home .
Remember if you are NOT contacted you CAN register and complete the survey by calling 1-844-679-3369. If you have any problems or concerns, contact Emilie Wright, Lead person on this project at Emile.wright@opwdd.ny.gov
Please share the information below about the Residential Request List (RRL) review and telephone survey with EVERYONE you know.
Attached at the end on this email are English and Spanish language versions of:
- the letter to individuals/families describing the RRL review and telephone survey,
- the Caregiver survey that is included with the letter (original format in Spanish, updated format in English)
- the July letter to MSC agencies that serve people on the RRL
- the May letter to all MSC agencies telling them about the Residential Request List review
We hope this information answers many questions.
NYC FAIR, INC
NYC Family Advocacy Information Resource
Description the Residential Review List process and survey:
Per OPWDD
“OPWDD is conducting a statewide review of its Residential Request List (RRL), formerly called the NYS CARES registry. Beginning in August, OPWDD will be calling families of individuals currently on the Residential Request List, or in some instances the individual if he/she made the request to be on the list, to talk about the OPWDD services you are now getting and those services you may be interested in getting. Special attention will be paid to residential supports you and your family may need now or in the future.
The information we get from these calls will be used to update OPWDD’s Residential Request List (RRL), and to help plan for future residential services individuals and families needs. This information will be made available in a report to the legislature that will include the residential needs people reported to OPWDD and a plan to address these needs. In addition to the information we receive from you, OPWDD will also be gathering information from other sources to help gain a full picture of residential needs.
You can help by talking to the OPWDD Caller and by answering the questions frankly. This will help us complete this important project. If you have any questions about the Residential Request List phone calls, please contact e-mail Residentialrequestlist@opwdd.ny.gov . Thank you for your interest in helping OPWDD to better meet your needs.
Some things to know about the calls:
- Dates of Calls: The calls will begin in August and will continue through September.
- How You Will Know the Caller is from OPWDD:
- The OPWDD Caller will tell you his/her first name and will tell you that he/she is calling for OPWDD about the review of OPWDD’s Residential Request List. The telephone number that will appear on your telephone caller ID is 844-679-3369.
- The caller will ask you to tell him/her your relationship to the individual with developmental disabilities and the date of birth of the individual with developmental disabilities on the list to confirm that they are talking to the right person.
- What We Will Not Ask: The OPWDD Caller will not ask you to give your Social Security number, Medicaid number, TABS number or any other identification numbers. The caller will not ask for any information about your income or benefits or your family’s income or benefits, or for any credit card information.
- What the OPWDD Caller Will Ask about the individual with developmental disabilities:
- Where the person is living now,
- Who he/she is living with,
- Who is helping him/her,
- How old the helper or caregiver is and if the helper or caregiver has any issues that make it difficult to do everything that the person needs,
- Whether you think the person with developmental disabilities is getting the right amount of OPWDD services to support him/her where he/she is living now, and
- What services you think the person with developmental disabilities will need in the future.
- If you would rather call in to do the survey, you can do that by calling 1-844-679-3369, Monday through Friday between 8am and 4:30pm. This phone number will be answered beginning on August 10, 2015.
- Planning for Services: The information you provide will help us plan for residential services individuals and families need across New York State and will not change your individual service plan. Please continue to work with your service coordinator and the OPWDD Regional Office to plan for your specific needs.
- Your Participation is Voluntary: You are not required to talk to the OPWDD Caller and if you do not, you will not lose services. OPWDD is trying to determine what residential services are needed.
*the letter to individuals/families describing the RRL review and telephone survey: RRL-Individual-Family-Info_Letter_FINAL_W_EW_SIGNATURE_073015, RRL-Individual-Family-Info_Letter_FINAL_W_EW_SIGNATURE_073015_SP
*the Caregiver survey that is included with the letter (original format in Spanish, updated format in English)Survey CAREGIVER Individual-Familiy-Letter 081115, Survey_CAREGIVER_Individual-Familiy-Letter_073115_SP
*the July letter to MSC agencies that serve people on the RRL: RRL_MSC-Agency_UPDATE_LIST_Letter_AK_070315, RRL_MSC-Agency_UPDATE_LIST_Letter_AK_070215_SP
*the May letter to all MSC agencies telling them about the Residential Request List review: EM_COMMISSIONER_1st_LTR_TO_MSC_AGENCIES_070115, EM_COMMISSIONER_1st_LTR_TO_MSC_AGENCIES_070115_SP