1/31/17 CP News

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Volume #23 – Issue #1



This year, COPA (ALIA, CP of NYS, DDAWNY, IAC & NYAEMP) and NYSARC are holding joint Albany Lobby Days on Tuesday, February 28 and Wednesday, March 1.  Together we represent nearly 300 providers of services to people with developmental disabilities in NYS, supporting more than one-hundred thousand people and employing about 140,000 staff.  Our joint effort sends a powerful message to the Governor and both houses of the Legislature, that we are united in our quest to not only preserve, but to strengthen services for New Yorkers with developmental disabilities and their families.  Executive Directors, staff, families, individuals with developmental disabilities and volunteers are all invited to join us and visit your local legislators in Albany.


Tuesday, February 28, 2017 –

Appointments with Executive & Legislative Leadership


Wednesday, March 1, 2017 –

Main Lobbying Day with your local legislators and briefing with the Senate and Assembly Mental Hygiene Committee Chairs


Registration:  All registrations for Lobbying Days 2017 are being made through this link: Lobby Day Registration.  For more information about registration and the information you must provide, please click here:   pdf Guidance for Registration for Lobby Day 2017 (217 KB).

Leadership Teams:  Tuesday, February 28th will be meetings for Executive Directors and Board Members with the Governor’s office and legislative “Leadership” and senior staff.  Please indicate on your registration if you are available for leadership appointments on Tuesday, which will require you to arrive in Albany early enough to attend the 10:00 a.m. briefing.  For those who indicate that they are available for leadership appointments, you will be notified as soon as possible whether your attendance is requested for Tuesday.

Arrival Time in Albany:  Everyone should plan on being at the staging area by 10:00 a.m. on Tuesday and by 9:00 a.m. on Wednesday.

Staging Locations:  The staging area is where you can meet, leave your belongings and coats, and (on Wednesday only) enjoy a catered breakfast and lunch (see below for details).  This year we will be using Room 944A of the Legislative Office Building (LOB) on Tuesday (Leadership appointments) and the third floor Terrace in the LOB on Wednesday (main lobbying day).

Meal Plan:  In order to avoid the hassle of going through security midday for lunch, we are offering a meal plan for Wednesday only that includes both a continental breakfast and a cold lunch.  If you wish to purchase the meal plan, please indicate on the registration form your dietary requirement – Regular, Kosher, Vegetarian – and provide your credit card information.

Briefings:  To ensure that our message is consistent, everyone should attend one briefing session.  The following four briefing options are available, but if you are unable to attend any of those sessions, check with Barbara Crosier at the Affiliate Services Office.

  • Friday, February 24 at 10:00 a.m. – IAC Office, 150 West 30 Street, 15th Floor, NYC
  • Tuesday, February 28 at 10:00 a.m. – 944A LOB (This session is for Leadership only)
  • Tuesday, February 28 at 7:00 p.m. – Hilton Albany
  • Wednesday, March 1 at 9:00 a.m. – Third Floor Terrace in the LOB

(NOTE:  Senator Robert Ortt is speaking at 9:45 a.m. and Assemblymember Aileen Gunther is speaking at 10:00 a.m.)

Hotel Reservations:  All participants are to make their reservations directly with the hotel.  There are still a limited number of rooms available for Tuesday, February 28-only at the Albany Renaissance Hotel – Cost $209.  Deadline for reservations at that price ends February 7th.  Click here for the Renaissance Reservation Link.

* If you chose to cancel your hotel reservation with at least 48 hours notice, please do so by contacting Yesse at 212-645-6360 so that we can transfer the room to someone whom we know needs a room.  However, if you care cancelling less than 48 hours in advance, contact the hotel directly.*

Barbara Crosier



bfair-logoFor nearly a year, the #bFair2DirectCare Coalition, made up of people with developmental disabilities, their family members, direct care workers and the agencies that employ them, has been asking Governor Andrew Cuomo and the NYS Legislature for additional funding so direct care workers can receive a living wage.

Staff shortages at CP of NYS Affiliates and other service providers threaten community integration that’s required by the federal government and supports and services critical to the health and well-being of the people with disabilities we support. With a vacancy rate of more than 10 percent, and a turnover rate of over 25 percent, the quantity and quality of programs will soon be threatened if additional funding is not made available.

This statewide staffing crisis can be mitigated if Governor Cuomo and the Legislature dedicate $45 million a year for the next six years, to slowly raise the salaries of direct care and other low-wage staff. In an overall budget of $152 billion that seems like a small investment (0.0296%) to avoid a crisis that is threatening to spiral out of control.

The Governor and his staff have seen the #bFair2DirectCare rallies, news stories, Op-ed pieces and letters to editors in papers in every corner of the state. Advocates have also visited the Governor’s top staff and secured the support of dozens of legislators from both major parties.

 The NYS Budget will be finalized in just a few weeks. Governor Cuomo needs to hear from more family members, staff and volunteers that he must act to prevent a mass exodus by direct care staff. Please contact him and tell him that time is running out.

Several CP of NYS Affiliates have conducted news events and public rallies and conducted letter-writing and phone campaigns to the Governor’s Office and their legislators. From Long Island, New York City, the Hudson Valley, the Catskills, Central and Western New York and the Southern Tier, we have made our voices heard. More rallies and letter-writing events are taking place across the state. Now is not the time to be silent. Please encourage those you know to contact the Governor and tell him that he must add the $45 million in funding to save our services.

#bFair2DirectCare:  Racker Centers Holds Letter-Writing Day

CP of NYS Affiliate Franziska Racker Centers in Ithaca had a letter-writing day on Monday, January 30 in support of the bFair2DirectCare campaign. The plan was to have draft letters ready for family members, staff, people with disabilities, volunteers, and others to personalize, sign and mail to the Governor and their State Legislators. Staff at the Racker Centers reached out to other disability service providers in the area and asked them to participate as well. They also invited the local media to cover the event.

Thousands of people across the State, including dozens of State Legislators, have already expressed their support for the plan. This event in Ithaca generated many more requests from concerned citizens. We hope others across New York will stand with us and Franziska Racker Centers in support of this important issue.

Al Shibley / Barbara Crosier




Clemson University is initiating a new tuition-assistance program that will provide two out-of-state tuition waivers per year for four years to select students with disabilities including cerebral palsy, traumatic brain injury and stroke. This program is the latest in a trend that has seen the Eastern College Athletic Conference create divisions for student athletes with disabilities at some championship events and a unified sports program created by the New York State Public High School Athletic Association in conjunction with Special Olympics New York, that pairs student athletes with and without disabilities on competitive interscholastic teams.

Please read the story at the link below.

Al Shibley




LifeVac is a non-powered rescue suction device designed to remove an airway obstruction in a choking emergency when current protocol has been followed without success.

Cerebral Palsy of Long Island in Nassau County, and most recently CP of NYS Metro Services, have implemented LifeVac in their facilities. LifeVac has also been deployed by fire departments, schools and other organizations throughout the country, according to the company.

Thousands of people lose their life in a choking emergency in the United States each year.  LifeVac is an option in a choking emergency.  For more information, visit

Al Shibley




Below is the link to the Funding Opportunity for the “Autism Transitions Research Project” through the U.S. Department of Health and Human Services Health Resources and Services Administration. Applications are due by Feb 13, 2017.

Deb Williams




The New York State Developmental Disabilities Planning Council (NYSDDPC) has announced funding opportunities for two family-care focused programs.

Text-Based Caregiver Support

One grantee in the amount of $600,000 ($200,000 per year for 3 years) will develop a multimedia messaging service (MMS) campaign that will provide Text-based and other customizable information on topics including health, wellness and resources for family caregivers of children with intellectual, developmental, and other disabilities.

The DDPC, in an attempt to address caretaker health concerns, intends to establish a text-based caregiver support network that will disseminate timely and relevant self-care and stress-management support through text messaging and web-based channels.

One grantee will be chosen to pilot and implement a statewide family caregiver support initiative modeled after Text4baby.


  • Letter of Intent Due Date: Wednesday, February 1, 2017
  • Proposal Due Date: Friday, March 3, 2017


Caregiver Support Training

One grantee in the amount of $600,000 ($200,000 per year for 3 years) will establish an infrastructure to locally implement the Vanderbilt Kennedy Center Mindfulness Based Stress Reduction (MBSR) and Positive Adult Development (PAD) trainings for family caregivers of individuals with intellectual, developmental, and other disabilities.

The initiative will provide family caregivers with continued opportunities for support training.  The project will implement two evidenced-based training models, Mindfulness Based Stress Reduction (MBSR) and Positive Adult Development (PAD), to assist caregivers in stress reduction and teach them effective coping mechanisms for both short- and long-term stressful situations.  The DDPC seeks to harness these highly effective strategies and employ them for family caregivers throughout New York State.


  • Letter of Intent Due Date: Wednesday, February 1, 2017
  • Proposal Due Date: Friday, March 3, 2017


Copy and paste this link in your browser to visit the funding announcements page:

For further information, contact Kimberly Berg at 518-486-7505 or




Teachers College, Columbia University in New York City is recruiting children ages 5-17 for its annual day-camp for children with cerebral palsy.

Children attending the free, three week program in June and July, will learn techniques for improving speech communication through games, singing and dramatic play.

Campers must use speech as their primary mode of communication and have difficulty being understood. For more information visit

You may also ask for additional information at or by calling 212-678-6656.

Al Shibley




The NYS Office for People With Developmental Disabilities (OPWDD) will offer a statewide WebEx training on Thursday, February 23 from 9:30 a.m. until 12:30 p.m. on OPWDD liability regulations.

This course is intended for voluntary agency providers. It will provide an overview of OPWDD’s Liability for Services regulations (14 NYCRR 635-12), including noticing requirements, voluntary provider and service recipient responsibilities under the regulations, the Limited Exception and Fee Reduction/Waivers for Preexisting Services. The course will benefit voluntary agency employees who work with individuals during the intake process, obtaining/maintaining Medicaid, applying for the HCBS waiver, receiving or requesting respite services, and those responsible for compliance with the regulations or billing. Adequate time for questions will be allotted. This session runs from this WebEx address and you must register in advance.

If you have questions about the training please contact Elena DeStefano, Director, Revenue Support Field Operations at 518-402-4339 or



 DDI conference