9/11/18 CP News

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9/11/18 CP NEWS                                            

Volume #24 – Issue #6



OPWDD is seeking comments on a draft document issued late on Friday, August 31 to “begin the movement to the second phase of OPWDD’s transformation-the development of specialized Managed Care.” The posted document contains the requirements for the creation of specialized Managed Care Plans to coordinate and deliver all an individual’s services, including OPWDD-funded services, healthcare, behavioral health, and medication management. The document includes prerequisites for education and experience for medical and clinical directors, financial reserve requirements and other standards the plan applicants will be required to meet.

OPWDD will be holding public forums over the next few months but comments are due on or before October 3, 2018.

The draft document can be found HERE.

CP of NYS will be collecting comments from Affiliates and urges all Affiliates to review the draft Managed Care Qualification Document so that we might provide informed and detailed comments to OPWDD.

Barbara Crosier



Steven Perlman, DDS

The Cerebral Palsy Associations of New York State (CP of NYS) Medical Directors’ Council is conducting a conference entitled Multi-Disciplinary Clinical Care For Patients with Intellectual and Developmental Disabilities on Friday, November 16th at the Embassy Suites in Saratoga Springs, NY.

The Council is made up of Medical Directors and other clinicians representing the CP of NYS Affiliates who provide medical care programs, supports and services for people with disabilities and their families.  These Affiliates employ nearly 18,000 people and serve over 100,000 individuals.  The Affiliates provide needed medical services through clinics that specialize in serving individuals with developmental disabilities.

The conference will begin with a Keynote Address by Dr. Steven Perlman. Dr. Perlman is a Clinical Professor of Pediatric Dentistry at the Boston University Goldman School of Dental Medicine. For the past 40 years, he has devoted much of his private practice as well as his teaching, to the treatment of children and adults with physical and intellectual disabilities.

For more information please visit our website  HERE.

Deb Williams



Please join us on Mondays at 11:00 a.m. to hear the latest information from Albany and Washington D.C. The COPA Legislative Briefing Calls will be monthly until the Legislature returns to session in January when the call will resume on a weekly basis starting January 7, 2019.   The 2018 calls will be on the following dates at 11:00 a.m.:

  • September 17th
  • October 29th
  • November 26th
  • December 17th

You can join the calls from: or

Telephone: +1 669 900 6833 or +1 408 638 0968, Meeting ID: 982 788 122.

Join us to hear what’s going on in Albany and Washington, D.C. and ask questions that concern you.

Barbara Crosier



The New York State Legislative Session and budget is months away but we are planning for the 2019 COPA Lobby Days – please save the dates! Next year’s events are planned as follows:

  • Friday, February 22nd – Western NY & New York City Briefings
  • Tuesday, February 26th – Leadership Lobby Day & DDAWNY WNY Legislative Delegation Meeting
  • Tuesday, February 26th – Albany Briefing
  • Wednesday, February 26th – Main Lobby Day

A block of hotel rooms will be reserved for February 25th & 26th and the meal plan for February 27th will be available for purchase. An information packet regarding hotel reservations, including the required Hilton reservation form, will be sent out soon, so please reserve your rooms as soon as you receive it.

Barbara Crosier



The Justice Center repealed their Vehicle & Traffic Guidance after hearing our concerns and sent a written notice on 9/10/18 in response to the CP of NYS request. Justice Center staff explained that they meant it as guidance to the field on how they make their decisions but acknowledged that the wording that it “…is intended to assist mandated reporters…” indicated that it was required of everyone.

It was notable that the vast majority of participants in the two Justice Center roundtables on the “guidance” were from OPWDD agencies or providers.   There was discussion that the intent of the Justice Center statute, when CP of NYS and others negotiated it, was to insure that true abuse and neglect are identified but that accidents and improper training would be used to improve quality and staff training. Unfortunately, there often continues to be a “gotcha” mentality by some Justice Center staff.

CP of NYS continues to be concerned that OPWDD requires everything to be called in, and the Justice Center finds the potential for harm/Category 2 or 3 in all incidents, which results in discrepancies between OPWDD and the Justice Center in resolution of the incident.  As a result, OPWDD providers spend a lot of time and energy dealing with incidents that should not have been called in and are not called in by other sectors.

The Justice Center indicated they look at the totality of the circumstances but OPWDD takes things at face value.  We requested that the Justice Center work with OPWDD to bring their incident reporting requirements up to present day with the repercussions of the Justice Center.  We will also continue to discuss this with OPWDD and the Justice Center and we will stress the benefits that clarifying which incidents must be called will bring to the individuals we support, our Staff, OPWDD staff and the Justice Center staff who are often backlogged in these non-incidents and are unable to devote the timely attention to true abuse and neglect.

Barbara Crosier



OPWDD Eligibility Regulations

COPA submitted comments on our concerns that the regulations not limit eligibility and that the statutory requirements be mirrored in the regulations. OPWDD responded that they had received comments from individuals, parents and providers regarding the eligibility regulations and wanted to clarify that “these regulations represent no change from the current process of determining individual eligibility for services. The purpose of these regulations is to place existing eligibility guidelines into a regulatory format, not to call into question the eligibility of current service recipients. Eligibility determinations are only revisited in very limited circumstances”.

OPWDD is making clarifying changes to the regulation and will reissue it. Although the formal comment period has closed, they “welcome your ongoing input, thoughts and concerns, and will take them into account as we work to finalize the regulations.” The revision to the regulation will require an additional comment period of 30-days, during which time anyone may comment on those revisions and the regulation again.

The original regulations can be found HERE.

OPWDD Telehealth Regulations

As required by the 2018 NYS Budget, OPWDD filed Emergency/Proposed regulations on Telehealth effective July 19, 2018 with comments due by October 8, 2018. The proposed regulation changes were discussed in the OPWDD Telehealth Workgroup, which Susan Constantino and Deb Williams are members of, and we believe these changes will have a positive impact on providing services to people with disabilities. CP of NYS would be interested in any of your comments. The proposed regulations can be found HERE.

Barbara Crosier



Help shine a light on these individuals who are the backbone of your organization by submitting thank you letters or videos to DSPs from the individuals they support and/or their families. The letters can be typed or hand written and scanned. You may also submit a short video of DSPs receiving or reading the thank you letters. Please include a high-quality photograph with each submission, unless you choose to submit a video clip. Please continue to send thank you letters and videos to Al Shibley at so that we may include them in the CP of NYS social media, even after DSP Recognition Week.

Barbara Crosier



The New York State Justice Center is offering additional trainings designed to assist organizations to provide staff training on the Code of Conduct for Custodians of People with Special Needs.  The objective of the curriculum is to ensure that staff who support people served under the jurisdiction of the New York State Justice Center (custodians) understand the importance of the Code of Conduct and how it serves as a framework of professional conduct.

The material takes the ten parts of the code and teaches staff how to practice ethical, dynamic and respectful support.  Participants of the Train the Trainer session will be taught how to use this curriculum to teach the Code of Conduct to both new and seasoned staff through skill practice, group discussions and other activities.

Participants in this training should include: agency trainers, human resource professionals, administrators and anyone that will be able to bring this curriculum to life in their respective organizations/agencies. The next sessions will be held as follows:

November 7, 2018


445 Hamilton Avenue

White Plains, NY 10601


December 6, 2018


Interagency Council of Developmental Disabilities Agencies

150 W. 30th Street, 15th Floor

New York, NY 10001

To register email:

Please address questions to:

Davin Robinson

Deputy Director

Outreach, Prevention and Support

Justice Center for the Protection of People with Special Needs

161 Delaware Avenue, Delmar, New York 12054

518-549-0223 |

Al Shibley



A new manual has been posted to that provides Medicaid policy and comprehensive guidance to providers participating in the New York State Health Home program known as Care Coordination Organization/Health Homes (CCO/HHs) serving individuals with intellectual and developmental disabilities (I/DD).

For more information go to the website below and click on “CCO/HH Policy Guidelines.”

Deb Williams



The votes are in and Robert, an artist representing United Cerebral Palsy of Long Island, is the winner of the 2018 Cerebral Palsy Associations of New York State (CP of NYS) IMAGINE Art Contest. This is the 15th year of the contest, which highlights artwork created by people with disabilities from CP of NYS Affiliates across the state.

Robert’s winning entry, Venice at its Best, is the centerpiece of the annual commemorative poster highlighting artwork from 20 other CP of NYS Affiliates. Robert is a quiet man with a natural talent who has become a prolific painter and loves the studio atmosphere. He will be recognized at the organization’s Annual Conference Keynote Luncheon on Monday, October 15th at the Saratoga Hilton Hotel in downtown Saratoga Springs.

Sau Vei Ling, from Queens Centers for Progress, was named first runner-up in the contest and Awilda Perez, from ADAPT Community Network, was named second runner-up.

Al Shibley




The NYS Department of Labor and Division of Human Rights released the long awaited model sexual harassment policy, complaint form, and model sexual harassment training program, which were mandated by statutory changes included in the state budget adopted in March 2018.  These documents are available in draft form and can be found HERE.

Barbara Crosier



Make sure that everyone eligible is registered to vote and votes in November. It’s important not only to our field, but American democracy, that we do all we can to ensure that everyone who’s eligible to vote has the resources to be informed and the opportunity to cast their ballots.

In 2016, over 35 million people with disabilities were eligible to vote, but only 16 million did. Help us make sure our community is registered, educated, and engaged to exercise their civil right to vote!

Every New Yorker can register to vote using the NYS Department of Motor Vehicle website or the NYS Board of Elections website or by calling 1-800-FOR-VOTE.

Here are some important 2018 election deadlines:

  • September 6th for registration for State and local primaries
  • September 12th last day for postmarking absentee ballots for primary
  • September 13th Primary Elections
  • October 12th for general election voter registration
  • October 30th last day for postmarking absentee ballots for general election
  • November 6th general election

Barbara Crosier



CP of NYS has been working with colleagues across the country over the past few years to have people with Intellectual and Developmental Disabilities (I/DD) designated as a Medically Underserved Population (MUP). A MUP designation would allow doctors to receive higher payments from Medicare and Medicaid for seeing patients with I/DD, would offer repayment of student loans for health professionals who serve this population, provide funding for research and other additional funding for healthcare of those with I/DD. It had been thought that the first step would be for several states to get a Governor’s exception/MUP designation for New Yorkers with I/DD and CP of NYS has been working with the Cuomo Administration who had been receptive but expressed concern with the federal reaction.   Then, on July 26th, Congressman Seth Moulton (MA-06) introduced H.R. 6611, the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act, or the HEADs UP Act of 2018.   H.R. 6611/The HEADs Up Act of 2018 would designate people with Intellectual and Developmental Disabilities (I/DD) as a Medically Underserved Population (MUP). This designation is direly needed as people with I/DD experience poorer health outcomes, shortened life expectancies, and lack access to even the most basic forms of care when compared to the non-disabled population. The I/DD population meets every criteria to be designated as a MUP, and doing so would open access to over 25 federal programs that would expand access to primary care and specialist services, incentivize new research, and authorize more favorable reimbursement rates for providers who treat this population, among other programs.

CP of NYS is working with COPA and our federal partners to advocate for the passage of The HEADs Up Act of 2018.

Please contact your local Congressional Representative to co-sponsor H.R. 6611 and contact Barbara Crosier at the Affiliate Services Office if you need any assistance.

Barbara Crosier



Direct support professionals deserve to have a Standardized Occupational Code (SOC). A SOC is designated by the Department of Labor’s Bureau of Labor and Statistics, and serves as a classification system by the federal government for various careers. Other positions like a Home Health Aide, a Personal Care Aide, or a Certified Nursing Assistant all have a SOC, yet a Direct Support Professional does not.  To confront this serious issue, the National Alliance for Direct Support Professionals has created a petition to establish a Direct Support Professional Standardized Occupational Code.  Sign the petition today!

Barbara Crosier



Social Opportunities Initiative

The DDPC has available one grant up to $750,000 ($250,000 per year, for three years) to develop, pilot, and evaluate a mini-grant program model which supports community based social opportunities for people with intellectual, developmental (ID/DD) and other disabilities living in rural and urban communities with high rates of poverty and disparate access to social opportunities and other community resources.

The DDPC is pursuing community-based initiatives that target unserved and underserved rural and urban communities throughout New York State that are sustainable and can be replicated in other communities that meet or exceed the NY State Poverty Rate. DDPC will select one grantee to develop, administer, and evaluate a mini-grant program focused on high-poverty, rural counties in year one, expanding to include high-poverty urban counties in years 2-3. These mini-grant initiatives should prioritize: reducing social isolation and developing social opportunities; supporting development of social skills, soft skills and prevocational skills; and exploring innovative transportation solutions to support community participation.


  • RFP Posting Date:                    Wednesday, September 5, 2018
  • Letter of Intent Due Date:   Friday, September 28, 2018
  • Proposal Due Date:                 Friday, October 19, 2018

Contact Person:
Kimberly Berg

For more information, please visit HERE.

Rural Peer-Led Outreach and Community Mapping

The DDPC has made available one grant up to $300,000 ($100,000 per year, for three years) to conduct peer-led outreach, community mapping, and coalition building within OPWDD Region 2 that will inform the development of Administrative Directive Memorandum, policies, practices, and tools to improve service delivery and access to information for individuals with intellectual and developmental disabilities (ID/DD) living in rural communities.

This initiative aims to address service and information delivery issues through establishment of rural advocacy coalitions throughout OPWDD Region 2. These coalitions will provide a uniform mechanism for feedback and recommendations that will result in systems transformation and ultimately improve services and supports for individuals with intellectual and developmental disabilities.


  • RFP Posting Date:                   Wednesday, September 5, 2018
  • Letter of Intent Due Date:  Friday, September 28, 2018
  • Proposal Due Date:                Friday, October 19, 2018

Contact Person:
Kimberly Berg

For more information, please visit HERE.

Court Personnel Training

The DDPC announces funding to select one grantee in the amount of up to $300,000 ($100,000 per year for 3 years) to create, pilot, and evaluate customizable training for Judges, attorneys, court officers, court clerks, and other non-judicial staff and legal system professionals about intellectual and developmental disabilities (ID/DD) and factors leading to involvement in the juvenile justice and criminal justice systems to increase staff knowledge to more effectively respond to the needs of people with intellectual and developmental disabilities.

Through this Court Personnel Training initiative, the DDPC is seeking to increase available training, knowledge and awareness about the needs of those with ID/DD in the justice system, and to build overall systems capacity to work with and screen for individuals with ID/DD who become justice-involved.


  • RFP Posting Date:                    Wednesday, September 5, 2018
  • Letter of Intent Due Date:  Friday, September 28, 2018
  • Proposal Due Date:                Friday, October 19, 2018

Contact Person: 
Kimberly Berg

For more information, please visit HERE.

Deb Williams



On Saturday, August 18th, the Ballston Spa ELKS Lodge #2619 hosted more than 100 participants from the Center for Disability Services at its Lodge. The afternoon event featured a barbeque and an afternoon of dancing courtesy of the Lodge’s resident DJ. Participants came from Residential and Day programs from 5 surrounding counties. The food and decorations were made possible by donations provided by local businesses and part of the ELKS National Foundation’s Anniversary Grant. A great time was had by all. A big thank you to Vicki and Dave Brown and the dozens of other Lodge members who worked so hard to make this event a huge success.

Al Shibley



A NYC TV station highlighted CP of NYS Affiliate ADAPT Community Network’s Housing Assistance program by featuring how the program helped one family in Manhattan.

Click HERE to see the highlights.

Al Shibley



The NYS Department of Labor is offering a recorded call of a live webinar conducted on July 18th. This 2 hour recorded webinar is billed as an Introduction to Universal Design of Learning (UDL) for WIOA Youth Programs.

It is presented by William Myhill and Hetsie Veitch from Syracuse University, NYSDOL Program Development Unit.

Go HERE to access the recorded call.  On the left-hand side of the page, go to “Recorded Sessions.” Select the webinar name and “View” for the recording to begin.   **When prompted, enter “Careers” for the password.**

You can access follow-up Resources at these sites: Webinar Presentation and Webinar Follow-up Resources.

Webinars and their follow-up materials are also posted HERE – scroll down to Youth and open the drop down for Youth Webinars.

This webinar will offer practical strategies to promote inclusion, access, and engagement of all youth, with and without disabilities, through the principles of Universal Design for Learning (UDL).

UDL is a framework that uses flexible ways to access and approach learning to best engage participants. Workforce Innovation and Opportunity Act (WIOA) programs serve a variety of youth with barriers and are expected to help them achieve academic, career, and leadership potential. UDL offers tools to help us make the ways we work with youth more relevant to their lived experiences, usable to their learning differences, and effective for evaluating their progress.

Pre-webinar video to watch: Advocating for Universal Design by Jennefer Rousseau (the video discusses UDL with examples from the field of education; however, it applies to programs serving individuals with barriers).

This recorded webinar is offered by the Program Development Office of the Division of Employment and Workforce Solutions.

Please address questions to Kerry A. Wiley at the New York State Department of Labor at (518) 485-2588

Al Shibley



The Cerebral Palsy Associations of New York State (CP of NYS) Annual Conference will take place October 15-17 at the Saratoga Hilton Hotel and City Center in Saratoga Springs. Approximately 700 people from all 24 Affiliates across the state will attend the event offering sessions on issues critical to people with disabilities, their families and staff from all 24 CP of NYS Affiliates.

The Conference will feature nationally known and highly respected speakers covering many different topics and disciplines. CEU credits will, once again, be available for many of the sessions. We will also be honoring a dozen organizations and individuals for their accomplishments and contributions to the field of developmental disabilities at our Monday Awards Luncheon and Monday evening Annual Awards Reception.

On Tuesday evening we will honor more than 60 outstanding staff members from our Affiliates for their contributions to fulfilling our mission. For more information please visit our Conference web page. We will also be providing additional ways to learn more about the Conference and get up to the minute news and photographs at the event on our social media sites.

Some of the sessions you will not want to miss are listed below.

Featured Sessions 

Monday, October 15

  • Noon – Keynote Address:  The Multi-Generational Workforce

Elaine M. Angelo, Performance Consultant, ProKnowledge, LL

The modern workplace is likely to include people from many different demographic groups.  Elaine Angelo will provide an opportunity to discuss and gain insight into the ever-changing landscape of the modern American workforce and its reflection of the generational makeup of the average American office.

  • 2:45 pm – OPWDD Commissioner’s View

The Honorable Kerry Delaney, Acting Commissioner, NYS Office For People With Developmental Disabilities (OPWDD) will provide attendees with an update on the future of services and supports for people with developmental disabilities in New York State, including the effects of managed care, Care Coordination Organizations (CCOs) and much more.

Tuesday, October 16

  • 8:00 am – Keynote Address:  Positive Exposure: Seeing Beyond Diagnosis

Rick Guidotti worked as a photographer in NYC, Milan and Paris for high profile clients including Yves Saint Laurent, L’Oreal, Elle and GQ. He took photographs of what were considered the world’s most beautiful people. Then one day he stopped working in the fashion industry and created a not-for-profit organization named Positive Exposure. What started with photographs has grown into a wide variety of programs created to empower people living with difference – and to educate the world around them. Come hear about his fascinating journey.

  • 9:30 am – Legislator Panel Discussion on Advocacy and Government Engagement

NYS Assemblymembers Melissa Miller and Angelo Santabarbara will discuss the importance of family advocacy as it relates to educating government officials on the issues important to the health and well-being of people with disabilities and their families. Both Ms. Miller and Mr. Santabarbara are parents of children with developmental disabilities and bring a unique insight to this critical topic.

The CP of NYS Annual Conference is sponsored in part by the Irwin Siegel Agency and BDO.

Al Shibley