12/10/18 CP News

Click HERE to view an html version of the 12/10/19 CP News.


Volume #24 – Issue #8



Beginning January 1, 2019, Cerebral Palsy Associations of New York State Affiliate Services Staff will have new email addresses and our website will also have a new URL.  On January 1, your Affiliate Services staff emails will be –

Mike Alvaro (Executive Vice President) – 

Angela Anderson (Executive Secretary) –

Cheryl Bradway (Office Manager) –

Barbara Crosier (Vice President, Government Relations) –

Mary Beth Durocher (Consultant) –

Tim Ferguson (Director of Online Learning and Special Projects) –

Tom Hamel (Vice President, Financial Management & Support) –

Al Shibley (Vice President, Communications) –

Deb Williams (Vice President, Reimbursement & Regulatory Compliance) –


 Susan Constantino will now have two email addresses: &


Additionally, our new website URL will be For the first six months of 2019, any emails sent to our current email addresses will automatically be forwarded to our new accounts so that no email messages will be lost.

If you have any questions or concerns please reach out to us.

Al Shibley



Senator Andrea Stewart-Cousins was unanimously elected by her Democratic colleagues to serve as the New York State Senate Majority Leader.  Senator Stewart-Cousins will become the first female leader of the Chamber when the new Democratic majority takes over the Senate in January. Her district includes part of Westchester County.  She was first elected to the New York State Senate in 2006.  Stewart-Cousins was elected to lead the Democratic Conference in December 2012, when she became the Senate Minority Leader, and is the first woman to lead a delegation in the New York State Legislature.

Stewart-Cousins selected Senator Michael Gianaris of Queens to serve as Deputy Majority Leader. Senator Jose Serrano, who represents parts of Manhattan and the Bronx, will serve as chair of the Democratic conference.  As the Senate Majority Leader, Stewart-Cousins will assign the Senate Committee Chairs.

We have heard that the Senate Committee Chairs will be announced within the week.  It is widely believed that Senator Gustavo Rivera (D-Bronx) will be the new Health Committee Chair and that Senator Shelley Mayer (D-Westchester) will be the new Senate Education Committee Chair.  Senator Mayer chaired the Assembly Special Education Task Force prior to being elected to the Senate in the spring of 2018 and is a friend to our 4410 and 853 schools.  It is unclear at this time who will be appointed to chair the Senate Mental Health and Developmental Disabilities Committee but we have heard that Senator Carlucci has requested the Committee.  Senator Carlucci has long been one of the strongest champions for people with developmental disabilities, their families and the CP of NYS Affiliates/agencies that support them. The disability community would be very pleased if Senator Carlucci becomes Chairman of the Senate Mental Health and Developmental Disabilities Committee.  However, we look forward to working with all of the new legislators and committee chairs.

Barbara Crosier



Lou Raffaele, the division director for the NYS Division of the Budget (DOB) for mental hygiene, retired on Friday, November 30.  Mr. Raffaele said that he always appreciated the CP of NYS advocacy and our reminding him what this work was really about people.  He said that is what he will miss and that he plans to volunteer in the field.

Mr. Raffaele also said that he had tried to address our concerns and indicated a human services COLA might be included in the 2019-2020 State Budget.  The COLA may not start until April 1, but the Administration knew that the COLA was sorely needed and overdue.

Some of you have worked directly with him but you have all heard CP of NYS talk about him.

We have worked together for many years and, although we sometimes disagreed with him, he always listened to our concerns and the reality of providing supports and services to the most complex individuals.  He was a key to the positive things we have seen in the budget during his time, including the #bFair2DirectCare funding and increased development and housing funding.

We congratulate Mr. Raffaele on his retirement and look forward to working with his successor at DOB (no replacement has been named as of this writing).

Barbara Crosier



As you know, the #bFair2DirectCare Campaign Coalition is asking agencies across the state to participate in the #FacesOfbFair Campaign, which asks self-advocates, family members and Direct Support Professionals (DSPs) to share snapshots of their stories by answering a single question about the value of DSPs or the challenges of the statewide staffing crisis.

Every two weeks #bFair2DirectCare will post a new question on Facebook and Twitter.  We are asking your support for this campaign by asking participants to answer a question in a short (60 seconds or less) video clip or a written response with a photograph of the DSP, self-advocate and/or family member. Please post these responses to social media using #FacesOfbFair and email them to and

The first question of the #FacesOfbFair Campaign was for self-advocates: What is one thing you’ve been able to accomplish with the support of your DSP that you’re proud of? 

The next few questions are listed below.  These answers will help us better advocate and better share the real impact of the funding requested by #bFair2DirectCare that is intended to raise DSP pay closer to a living wage. We hope you will encourage your followers and friends to participate in this campaign.

#FacesOfbFair Questions 

  • December 10 – Family Member Question:  What is one thing your loved one has achieved with the support of their DSP that surprised you or “wowed” you?
  • December 17 – Self-Advocate or Family Member Question:  If you could thank your DSP for just one thing, what would it be?
  • January 2 – Self-Advocate Question:  What is one disappointment you’ve faced because of the DSP staffing crisis?
  • January 14 – DSP Question:  What is the single biggest challenge you face as a DSP?

Additionally, there are many #bFair2DirectCare events across the state over the next months.  One was already held in Rochester and there are others planned for Yonkers, Buffalo, Syracuse, Binghamton, Mid-Hudson, Long Island, NYC, and an event at the State Capitol in Albany to be held sometime in January.

Since we have been told that there will probably a COLA in the Governor’s budget proposal (although it may not begin 4-1-19), our message remains positive. We are thankful to the Governor for funding the first two phases of our Living Wage proposal for DSPs and we are hopeful that he will include funds for the next two phases, which is the formal #bFair2DirectCare ask. In addition to the Living Wage funding, CP of NYS is strongly supporting and requesting the implementation of the Human Services COLA/Trend.  We will also hold a reception in Albany on January 22 at 5:30 p.m. in 711A of the LOB for new legislators once the session begins to introduce them to #bFair2DirectCare and inspire them to take us on as their cause.

The #OurkidsareYOURkids campaign has created a communication for parents who are upset that their child’s teachers keep leaving to explain that it’s because of the statewide lack of state funding and not the fault of their child’s school. We will hold a reception in Albany for new legislators once the session begins to introduce them to #OurkidsareYOURkids and inspire them to be champions for our teachers, students and parents. The campaign will also be unveiling a social media campaign to build awareness among legislators.

Additionally, we are collaborating with all our statewide partners to send out a teacher and teacher assistant vacancy and turnover rate survey and we continue to meet with staff from the Senate, Assembly, Governor’s Office and the Division of Budget.  Please ensure that your Affiliate responds to the survey if you have a 4410 school. This will provide critical data to assist us in advocating for your schools.

Barbara Crosier



Please join us and register for the 2019 COPA Lobby Days!


DDAWNY begins Tuesday, February 26th with the WNY Delegation meeting

Leadership Appointments are Tuesday, February 26th

Main Lobbying Day Wednesday, February 27th


Registration Deadline: February 7


Hotel Reservations:  All participants are to make their reservations directly with the Hilton Albany Hotel by completing the reservation form available through this LINK or by calling them directly at 855-275-4790 (or the Renaissance Hotel for DDAWNY members).

The deadline for the group rate at the Hilton is January 28, 2019.  If you need to cancel a reservation, please do so by contacting Yesse at IAC (212-645-6360 or 646-820-1375) so that we can transfer the room to someone on the waiting list.  If you are cancelling less than 48 hours in advance, please contact the hotel directly.

Contact the Affiliate Services office (518.436.0178) with any questions.

Barbara Crosier



The New York State Assembly Mental Health and Developmental Disabilities Committee held a hearing on Thursday, December 6, to determine if there was access to mental health and developmental disability supports and services as well as the need for additional resources or actions necessary to ensure the availability of such services and supports in context of the New York State Budget funding.

Assemblywoman Aileen Gunther, Chair of the Assembly Mental Health and Developmental Disabilities Committee, presided over the hearing and was joined by her colleagues on the Committee.   COPA presented testimony at the hearing with the key concerns including:

  • Lack of COLA or Trend
  • Workforce Shortages/#bFair2DirectCare
  • Managed Care and Lack of Transformation Funding
  • Lack of Supports for High Needs Individuals
  • Development, Modification & Funding Shortages
  • Systemic Roadblocks
  • Need for Stabilization Funding

The testimony highlighted the need to invest in supports and services for individuals with developmental disabilities and was very timely as the Governor’s Division of Budget is finishing up their work on the Executive Budget proposal which will be released next month.  The New York State 2019 Legislative Session begins on January 9, 2019.

Barbara Crosier



We wanted to remind you of the public forums being held on accessible ride sharing services for people with disabilities.  The dates and locations are listed below.

Please forward any comments/reactions or points that you would like to share to Mike Alvaro at  CP of NYS will submit written comments in December. Also, please let us know if you or anyone from your Affiliate will be attending any of the forums.

The New York State Transportation Network Company Accessibility Task Force will conduct five public listening sessions across the state to examine the availability of accessible ride sharing services for people with disabilities. Through these listening sessions, the task force will analyze current service options, the need and demand for accessible services, and identify opportunities and barriers to increasing these options for customers with disabilities.

The task force was established through legislation passed last year to bring ride sharing services to Upstate New York and Long Island. Members of the task force include representatives from organizations that serve people with disabilities and representatives from transportation network companies such as Uber or Lyft.

The public listening sessions are scheduled as follows:

December 11, 2018
10 a.m. to 1 p.m.
Empire State Plaza Convention Center
Meeting Rooms 2-3
Albany, NY 12242

December 18, 2018
10 a.m. to 1 p.m.
Moose Lodge
631 Pulaski Road
Greenlawn, NY 11740

Each session will begin with a brief presentation from the members of the task force. Following the presentation, interested parties will be invited to provide their feedback on ride sharing services for people with disabilities.

Click HERE to register.  More information for passengers, applicants, drivers and local governments is available on the NYS DMV website.

Al Shibley



According to the Justice Center, professional boundary issues are prevalent in many types of abuse, neglect and quality of care circumstances, ranging in severity from well-intended acts that may undermine a person’s growth and independence, to aggressive physical or sexual acts of a criminal nature. The Justice Center has developed a new resource on its Spotlight on Prevention web page to increase public awareness about the need to maintain appropriate professional boundaries between care providers and the people they serve. Their new Professional Boundaries for the Protection of People with Special Needs toolkit has been developed to underscore the importance of professional boundaries and how to develop and maintain them to provide a safe environment for people receiving services.

Al Shibley



Cerebral Palsy Associations of New York State (CP of NYS) Affiliate CP Nassau’s Mary C. Hodge has been chosen as Volunteer Coach of the Year by the United States Olympic Committee (USOC). Coach Hodge is the Coordinator of Group Site Based Day Hab and is the Head Coach of the CP Nassau sports team, the CP Thunderbolts.

The USOC Volunteer Coach of the Year is presented to a coach who does not receive payment in any form for their involvement in coaching at any level.  Ms. Hodge is the high performance manager of Para Powerlifting at Logan University, the high performance management organization for the sport in the U.S.  She has served as head coach or team leader of the U.S. Para Powerlifting team in four Paralympic Games, five world championships and four Parapan American Games. In 2018, Hodge received a Power Women in Business Award from the Long Island Press and was a finalist at the sixth annual Imagine Awards, a competition for non-profit organizations.  In 2012, Ms. Hodge was the recipient of the prestigious Award of Distinction at the CP of NYS Annual Awards Dinner.

Her local team, the Thunderbolts, won two bronze medals at the national championships and she coached seven U.S. athletes to top-10 finishes at the 2018 World Championships. In addition to her work developing Para Powerlifting regional hubs around the country, she volunteers internationally with soldiers with disabilities.

“It has been a tremendous honor to work with many Para athletes over the last 20 years on their quest to represent the United States of America.  Para Powerlifting is my passion,” said Ms. Hodge.

Al Shibley



The NYS Developmental Disabilities Planning Council (DDPC) has created a survey on abuse of people with Developmental Disabilities.  The survey and research project will be used to develop a statewide strategic plan for the DDPC on the prevention of abuse of people with DD. The survey is for individuals with a disability, family members, staff of agencies and others.  Please see below for more information and a link to the survey.

This community-wide needs and gaps survey is part of a comprehensive research study being funded by the DDPC.

  • All survey respondents should be over 21 and live in NYS.
  • All surveys are anonymous, and responses are encrypted for additional safety.
  • The online survey can be completed partially or in phases over time and submitted when completed. A special identification code is provided for each respondent.
  • The survey is designed to be broad based and inclusive to all segments of our statewide community.
  • Accommodations are available upon request (e.g., responses taken by phone, paper surveys).
  • The same computer can be used for more than one survey to allow agencies an opportunity to offer their constituents a way to participate at their sites or in community-based sites and libraries.
  • The survey will remain open until the target number of responses from each of the respondent groups is received, or December 28, 2018, whichever comes first.

The survey can be accessed at Survey: Prevention of Abuse of People with Developmental Disabilities In NYS or

Please share the survey link with others.

If you have questions, please contact Kathryn Cappella at 585-533-1154 or

Al Shibley



Despite the region’s first major snowfall of the season, more than 70 medical professionals from across the state travelled to Saratoga Springs on November 16 to attend the first Multi-Disciplinary Clinical Care For Patients with Intellectual and Developmental Disabilities conference. The event was conducted by the Cerebral Palsy Associations of New York State (CP of NYS) Medical Directors’ Council and was held at the Embassy Suites Hotel.

Dr. Steven Perlman, a Clinical Professor of Pediatric Dentistry at the Boston University Goldman School of Dental Medicine, delivered the Keynote address. Dr. Perlman founded Special Olympics Special Smiles, an oral health initiative for the athletes of Special Olympics International active in more than 100 countries.  He discussed the disparity in available healthcare for people with developmental disabilities and encouraged the medical professionals in attendance to continue to work to provide quality medical care for people with disabilities.

Four sessions followed Dr. Perlman’s Keynote address. Dr. Maria Kansas, Chief Medical Officer at the Center for Disability Services, discussed co-occurring conditions in people with developmental disabilities.  Next was a session on swallowing difficulties in patients with I/DD featuring Dr. Ruth Alejandro, a pediatric Physiatrist at Blythedale Children’s Hospital, Diankah Eligon, a physical therapy supervisor at Metro Community Health Centers and Elizabeth Foglia, a speech language pathologist at Aspire of Western New York.

The afternoon began with a presentation on oral manifestations and complications related to treating patients with complex diagnoses from Rita Bilello, DDS, Metro Dental Director at Metro Community Health Centers. The day’s final session was a discussion on the variable presentations of mental illness in people with developmental disabilities conducted by Richard Cohen, PhD, Director of Behavioral Health at Metro Community Health Centers, and Jessica Hebrank, MD, a Psychiatrist at the Center for Disability Services.

The 2019 conference is scheduled for Friday, November 15 at the same Embassy Suites Hotel in Saratoga Springs.

Dr. Maria Kansas and Dr. Vincent Siasoco address attendees at the conference on November 16.

Deb Williams